Email Yvonne and Richard at londonderryair@gmail.com

30th April 2009.

Jack became sick today. We didn’t notice until he turned up for a day’s work, battling cancer in the transfusion bay. He had pain but Jack carries pain like an uncomfortable knapsack. Jack had no fever. Jack did not signal for help, he carried his load.

But his blood pressure plummeted and his team interpreted the seriousness of his plight despite Jack’s refusal to shout for help. I was not there but in the frantic rush to stabilise his system Jack protested at the efforts to insert peripheral lines, “ No you are not doing it. Two’s enough for one day!”

Jack was transferred to the intensive care unit.

Before his sedation we, Mum and Dad, Connor, Rhian, Giselle and Jen gathered for UNO. We sat at his bed for one more lesson from the master.

The game ended and Jack won. I cannot remember if he won the cards but I am sure that his gentle eyes gave all of us what we craved in that moment.

Jack was stilled then.

1st May 2009.

Jack is in room 319 on the 3rd floor of the Children’s Hospital of Vermont at Fletcher Allen Hospital, Colchester Avenue, Burlington, Vermont, USA.

Jack’s been pierced, entered and entangled with new ports, new needles and attached to new vessels. Jack has been damaged by design. Care invades Jack so that tubes might bring pain relief, might ferry sedatives and might refuel his body with fluid, with blood and with plasma.

Jack’s ventilated; necessary in order that oxygen and carbon dioxide might flow through his lungs. I can see Jack’s out-line and the rise and fall of his chest. Shallow movements, such slight activity – evidence of that, which was happening deep inside.

2nd May 2009.

Jack remains sedated. He now lies in a prone position in order that his lungs might have an opportunity to benefit from the change in posture and a chance to disperse the build up of fluid. Jack has become swollen from the necessary transfusions of fluids. Fluids and medicines, which are required to maintain his blood pressure and other vitals.

Yvonne and I understand some of the mechanics of the cancer and can interpret the ‘numbers’ associated with the disease and its activity but we have no instinct or understanding of this situation. The monitors and blood chemistry provide little of meaning without the interpretation of Jack’s doctors and nurses.

It is quiet. And with Jack’s state of sedation and swollen appearance I am left to ignore the numbers and believe in the battle within - believe in Jack.

I have no doubt of the ferocity of the fight. But it is contained, shrouded by Jack. Jack’s body demonstrates the pressure from infection it contains.

Jack’s on a hill-top, a knoll with slick sides dampened and threatened by darkening skies. A boiling horde surges about him but he stands.

Jack’s adrift in a boat on a sea of malign peaks and sucking subversive troughs. Acid waters attack his craft but he sails.

Jack walks in a desert, taunted by phantom glades and cooling pools. Slipping sands persuade him to rest but he journeys.

Later on 2nd May 2009 the doctors have dispelled any illusions we might have harboured about the extent of the infection.

Jack’s lungs remain in poor condition and fluid also pools between the lungs and the chest cavity.

Fluid, which Jack should be excreting in his urine, is building in his body and the acid level of his blood continues to move from the normal range.

We are changing the medicines as we speak to try and rearm Jack and prevent his body being overrun. It appears that within the next 4 to 12 hours we will know if the new ammunition might tend to redress the balance his body requires.

Jack remains stilled. Connor and Rhian have both seen Jack and held his hand. Both have been his recharging stations for the last four years. Minutes in their company have always led to a boost in Jack’s power. Jack has become enlivened in an ordinary, fresh unassuming confidence. Jack has always been wholly restored to his rightful station by Connor and Rhian; they have provided him with an ability to be a child. It is with sadness and leaden disappointment that we must allow them to see Jack and for them to realise his plight. It is with joy that we witness their love for their brother.

They have done enough for now and returned to friends.

We wait for the next tests due in 30 minutes, (3:30pm), that may suggest Jack’s trend.

It’s a beautiful day outside. For perhaps the first time in his relationship with hospitals, Jack’s window provides a panorama. The tiers of the Adirondacks stretch beyond the west bank of Lake Champlain. Tears of a different formation have flown on the east bank. There is an erosion of the mountain at the centre of our family.

There was a brief peak in Jack’s statistics and we clenched the figures and begged for a repetition. Please work.

At midnight we decided. No that’s wrong, for we never decided, at midnight we faced the formality and finality of that, which had already happened.

All the medicines and efforts we had permitted were not answering Jack’s need. And perhaps we forgot Jack’s need for a short time and our need trespassed his. Perhaps our want took precedence over Jack’s.

It was clear that Jack had found an escape from the cancer, had discovered his own route to peace.

We realised that Jack’s battle was over and that he had chosen to outwit his enemy and God had granted him solace. We stopped the medicines and Jack’s body could, at last relax. Jack’s heart never failed, this heart, our heart, had supplied hope and energy for all of us for long enough. Jack’s heart rested at 12:37am. We accepted his hope and love that we might propagate these; his gifts. Yvonne held Jack and her embrace guided him as he left

Jack has been a magical mirror to our family and our friends. No matter how bad, how ugly the circumstances Jack would transform – the reflection we saw, bathed by his light made our world beautiful. For 4 years the light that has shone from Jack has revealed aspects of life otherwise unknowable. Jack revealed to us the potential for good and fostered the resolution that hope is indefatigable.

From a father to a son – thank you for teaching me what is important. We carry your hope forwards.

From a mother to a brave son – thank you for teaching me the true meaning of love. You will never leave me, nor I you.

We thank you, each and every person that lived and loved with Jack. We trust you will move forwards holding Jack’s hope in your heart.

A poem that appeared during Jack’s last days said a lot about the last four years.

‘Woulda-Coulda-Shoulda’

All the Woulda-Coulda-Shouldas

Layin’ in the sun,

Talkin’ ‘bout the things

They woulda-coulda-shoulda done…..

But those Woulda-Coulda-Shouldas

All ran away and hid

From one little did…………………….from one little Jack.

On May 21st 2009, a team of up to 100 officers and staff from the Metropolitan Police, Essex Police, British Transport Police, Sussex Police, Cambridgeshire Police, and British Airways will fly to New York to run two half marathons over two days(May 23rd and 24th) in Central Park. Each team member will run in uniform in an effort to raise awareness and desperately needed money for research into Neuroblastoma.

Every year, around one hundred children in the UK are diagnosed with neuroblastoma. For nearly 70% of children first diagnosed, the cancer will have disseminated to other parts of the body reaching what is known as Stage IV, or “high-risk”, neuroblastoma. “High-risk” patients, such as Jack, who are treated with conventional chemotherapy, radiation therapy and surgery have a three year survival rate of less than 30%. The majority of “high-risk” patients will relapse; there is no known cure for those children who do relapse.

At the present time, UK hospitals are only able to provide palliative care with the best hope of partial or medium term cures available in the United States. Our aim is to raise enough funds to bring some promising US therapies to the UK.

Time is running out for children diagnosed with this deadly disease. They need your help. No government funds are provided for research into this disease and with the numbers of children diagnosed being the minority in comparison to many other adult cancers, there is a lack of interest from the pharmaceutical industry. Help us - make a difference today.

Without the help and support of individuals like you the Children fighting this disease today, and those who will be unfairly chosen to fight tomorrow will have no better chance of winning than they do today. Please consider making a donation to help us fund a cure.

Please go to http://www.justgiving.com/policerun4jack2009

Update April by Richard

I expected the last few weeks to provide contradictions. Contradictive turnings of season; one orientated about the landscape, the other centred upon one of its inhabitants. While spring attempted to establish itself amongst the mountains and lakes of Vermont I anticipated an autumnal quickening in Jack. Neither occurred in the way I forecast.

The cold and snow re-visited with a persistent frequency. The pent up foliage was denied its wish to green. And Jack, well Jack, bloomed. The blood counts held and his weight increased and he had energy. We swam - Connor, Rhian, Jack and I adopting habits repressed during Jack’s illness. At odd intervals over the last four years, when we had attempted a casual dip, it was often restricted and restrictive – our intentions neutered by Jack’s tiredness or quickly frozen by the penetration of the water’s chill. Now we were swimming every other day at the YMCA. The trips were prefaced with enthusiasm and each swim contained the necessary level of violence; meaning all the kids attempting, by fair means or foul, to submerge me or a sibling to the point to gasping surrender. And each visit ended with all of the children voicing appropriate dissatisfaction at the shortness of it all and even physical resistance to my ushering them from the pool. I was rightly derided for a lack of stamina.

My sister, husband and kids flew from the U.K. to visit us for 6 days. Just a few weeks before I had worried that their visit would coincide with a dark time and that it would be difficult to squeeze much joy from the few days of fruitfulness their arrival might herald. I was wrong. There was fun. Cycling at Stow; swimming; walking at Camel’s Hump and a BBQ at North Beach. The weather had turned and blue skies provided opportunities for all of us to turn the circumstances of our gathering in Burlington from a sombre occasion into a holiday.

But as the skies cleared overhead Jack’s pain began to grow bold. The walk at Camels Hump was too sore and he rode atop my shoulders – content in his role as guardian of the ‘bear whacking stick’, (BWS). In fairness it was difficult to assess the merits of the BWS as we lacked a suitable test subject – that being a bear. However on human adults I can vouch the efficacy of the BWS and of particular note – to male bears – is Jack’s ‘special move’.

48 hours later, ( 16th April), the position was clarified. Scan day.

Jack’s long entanglement with the cancer has lent me a perspective during the scans. I expect to see the cancer as much as I expect to see Jack. What I cling to is that the shape of the cancer and its reach has not extended. That my mind’s eye can overlay the last scan and that nothing seeps beyond the perimeter of my memory. I can even accept an extension, a new tide mark but only if it stems from an overflow, a breach in Jack’s dam. Why? Because you can focus on measuring the flow and the pool that forms. Because you can think of a strategy to stop the outpouring of cells. Because they are a familiar enemy in familiar territory. But that, which is new, that which suddenly appears as a new frontline is always difficult. Sometimes I think of the scan’s images as that of constellations; groups of radiation flaring amidst the black serenity of Jack’s ordinary tissue.

The scan flared in a new place. Beneath known disease in his shoulder and beneath the explicable light spot from Jack’s port shone a new star. Jack’s cancer is now in his liver. Later it was confirmed that there are, in fact, two areas within the liver, which now have the neuroblastoma cells. I could give dimensions of the tumours but it seems crass – as crass as the question I posed to discover the information.

I am not sure of an antonym for ‘placebo’ but if there were one then perhaps proof of its existence manifested itself after Thursday’s scans. The scans’ contents seemed to sponsor an immediate increase in pain for Jack. Jack’s arms and legs hurt. The boy who swam like a real boy just a few days before became wooden with hurt. We began pain meds but knowing that they may not be sufficient to cope we also started oral Temodar and steroids on Saturday. On Monday (20th) Jack was switched back to Cytoxin, along with Topetecan, Velcade and Zometa. We are sorry to have to come off the TPI287, it has been an amazing break for Jack's blood counts. Jack, who has required regular platelet transfusions twice a week, has not had any platelets for 3 1/2 weeks now. His bone marrow has been triggered by the TPI and we regret that we have had inadequte time to give the drug a proper chance to work. A special thank you to Giselle, ( Dr Sholler), for her phone calls during the weekend.

Monday saw Jack being admitted to inpatient in an attempt to control his pain with IV pain relief.
We have an objective and that is to beat back Jack’s pain and take him home to rest.
Please don’t confuse the word objective for anything other than what it is – we can only plan for what is achievable. But Jack’s never been content with simply ‘achievable’.

We need your prayers more than ever.

Update March 2009

Since our last update Jack has completed one cycle of Cytoxin, Topotecan and Velcade. A break was necessary to allow his blood counts to recover, during which we hoped the red tape would be finalised and the TPI 287 could begin. As normal with experimental drugs, Jack would have to yet again undergo precursory scans and more bone marrow aspirates, but the carrot was the new date for beginning the trial - Thursday 19th March.

The week proved a difficult one. St. Patricks Day saw the 4th anniversary from when this battle first began. This week seemed little different to that four years ago. General anaesthetic and Bone Marrows on Tuesday, Mibg injection Wednesday and 2 hr combined Mibg/MRI/CT scan on Thursday. At the end of the scan it was obvious the disease had progressed, it was now in his Right leg which had remained clear since radiated last September. More spots lit up around his ankles. For once, I didn’t bother to hang on for the report. This disease had progressed through chemotherapy – that was a first for us. Chemo has, until now, always held it in check. Then on Wednesday night came the news that the TPI couldn’t start until the following Monday. Protocol demanded a 21 day break since the last chemotherapy infusion, that 21 days expired Monday 23rd March.

What would have been an anxious weekend was brightened by a visit from some very special friends from NYC. The distraction was exactly what we needed. Jack, who hadn’t been into a swimming pool for well over a year was no longer neutropenic, and spent two hours in their hotel pool on Saturday evening, and again on Sunday morning.

Monday morning arrived so much faster. Jack needed to take a steroid at 9pm on Sunday night, and another at 3am to combat any allergic reaction to the new drug. He was scheduled to begin the TPI 287 at 9am, but blood draws were needed from 8am. We arrived at the clinic to find Jack’s temperature had plunged to 33 degrees. It had never been so low. He complained of headaches and had become very pale. After an hour and several hot blankets, his temperature began to slowly rise, reaching 35 degrees – still low but better than what it was. Lengthy assessments concluded that in all likelihood these were side effects from a strong dose of steroids in a short time period. The TPI infusion began. The headaches remained for most of the day until we returned to the Ronald McDonald House in the evening - there we were thrilled to find friends we knew from Sloan Kettering had arrived – Ryan Reardon and his Mum. Ryan is to be the second child to have the opportunity to try TPI. Once again, distraction proved the cure to the headaches and pains – Jack and Ryan headed off together -no further complaints were heard.

TPI287 works by targeting and inhibiting the activity of tubulin, which is over expressed in rapidly dividing cancer cells. By inhibiting tubulin activity TPI 287 stops cell division limiting the ability of the cancer cells to grow and divide.

Thank you to the many who continue to pray for Jack. Our hopes of beating this disease lie with God, we need your prayers more than ever.

Update February 2009

There has, at times, been an ease to the writing of Jack’s progress. Progress sometimes positive; sometimes negative; a life compressed, unfairly squashed but, when studied, a life exquisite in its detail and depth.

And his progress empowered the words we wrote and rendered the page possible. It became our translation of Jack’s journey. Whether the words were set amidst a season of anger, of reflection, of humour, of sadness or joy – all were experiences that gave meaning to what was happening in his life, to his life. A meaning we could try and articulate.

Condensed pain condensed suffering perhaps but equally opposed by substantial and distinct joys. And such bright, pure laughter that when an eclipse of sorrow occurred there always remained, a euphoric amnesia to dull the pain. Life distilled into 7 years not diluted by the stretched minutes and hours and days threaded to form our 70.

Jack’s cancer has not responded to the last five weeks of treatment. Actually it might have responded meaning the cancer remains at the tide mark of January’s high water and has failed to flood further. But while the extent of the disease’s range has been held there has been no stay to its anger. The cancer now becomes irate at the halt in its advance.

Jack began suffering pain on 23rd February 2009.

His pain has produced a psychological return to the days in 2005 before we knew of the name of his illness. There was pain in the femur of the left leg then. Pain intense and unfathomable. Now the hurt is explicable but where ignorance once lent itself to a resolve and a belief in healing being inevitable, we now have reason, experience and knowledge. Three words that should frame an argument for Jack’s cure are withered despite our nurture.

Last Sunday Connor, Rhian and I left Burlington, left Yvonne and Jack. Jack was composed at the airport. In fact it was surreal because while we exchanged words, hugs and kisses – all of which were intended to demonstrate our assurance in the future, our re-uniting at Easter – an invisible prowler kept shouting, ‘no you won’t’. While that Spectre should have been a paranoid illusion heckling my unconscious its confidence came from the genuine quality of its prophecy.

We had spent 10 days in each others company and enjoyed a chaotic jumble of fun. Skiing, snow, sleepovers, hospital, medicine, pain, laughter, friends – not an haute-couture experience rather an imperfect costume of many colours. Or, perhaps a stitched blanket of precious moments that could already be treasured as family quilt. Friends were the key to the beauty of the fabric.

The flaw in the design of the weave was Jack’s scan. The flaw’s effects were manifested by the extent of the pain Jack suffered soon after.

Tuesday night 24/25th Yvonne phoned. It was necessary to return to Burlington. We spoke of decisions.

Wednesday I returned, just before midnight. Yvonne had said she wanted to meet me at the airport but arriving slightly early I thought I could get to the Ronald McDonald House before she would leave. Mistake!

I reached the house at 12.10am and found Jack curled in a position that all parents reflex to. You can’t help it; it’s as the descent of rapture. Jack’s, unknowing gratuity dispelled my fears and tiredness. Jack in that moment was impregnable.

The rapture didn’t last long as I realised Yvonne wasn’t there, she must have gone to the airport. Me with no phone card, no reception on my mobile. Bollocks. I e-mailed her hoping that her phone would comprehend the sender was a man trying to rectify an error of judgment. Would the phone buzz with sufficient conviction that she’d check the message?

Yvonne returned and, quite rightly expressed her sincere thanks for my well intended act. Then she wrapped herself about Jack and I listened to the faint noises of thumb sucking and breathing.

Jack finished his chemotherapy on Friday. On Wednesday we discovered he also had pneumonia. We have the weekend, and Monday will bring what decisions Monday will bring.

I caught the tail end of Jack’s earlier pain during Thursday and Friday. Thursday showed clearly the cancer causing immense pain in his left leg; Friday the pain continued but somewhat diminished. Saturday saw one morning’s dose of opiate but, then, nothing…… the pain left as quickly as it had arrived.

Jack’s done a good deal of laughing in the last 48hrs.

We have discussed the options for Jack.

We are going to ask Jack to try the new drug TPI-287, previously used in adults, but will have to wait for a period of two weeks for the chemotherapy’s presence and effects to wane.

Update January 2009

On 18th December we discovered Jack had relapsed in multiple areas; too many areas to count. In two months this disease had exploded in his leg, pelvis, spine, shoulders, arms and even in his mandibles. We were devastated at the sheer expanse of the relapse, devastated because Jack had fought valiantly for so long but his body is exhausted.

The weeks leading up to the scan had found him in hospital time and time again with various viruses and infections. He required weekly transfusions and his blood counts showed no sign of recovery. During his last hospital admission Jack had for the first time ever, told us he was fed up with treatment and did not want it any longer – he wanted a normal life. We all did. And above all else we wanted Jack to have some quality of life. We could put him through more treatment, but that would have to be in the U.S., we would run the risk of making him very sick, and losing him in this condition, in another country, or we could stop treatment now and make his last few months happy ones.

And so we decided we would do no further treatment. Our UK consultant prescribed Etoposide as palliative care which may slow down the progression of the cancer and we were told he could possibly live for a few months on this.

We decided to go away for a week at Christmas. An amazing charity ‘Homes with Heart’ found a cottage for us near Padstow in Cornwall. We left Boxing Day and spent a magical few days in the cottage which had once been a barn, but was converted into an inspired open-plan mezanine. The owners, Vanessa and Gordon had placed a Christmas tree surrounded by presents for the children. The days were cold but the skies were bright blue and the sun shone constantly. We were right beside the Cornish Coastal path and cliffs, where the views were simply breathtaking. We had no internet access and mobile phone reception was limited, and so we spent uninterrupted time together as a family. We laughed lots and cried a little. Jack was happier than we’d seen him for a long time, so alive with energy and excitement that we could almost have forgotten...

Watching him so happy I knew I wasn’t strong enough to sit back and watch him die. He had fought so hard and for so long, it seemed wrong to simply let this disease take over again. Gradually I mentioned the prospect of returning to America again to Jack. He didn’t seem particularly bothered by the idea, but didn’t ask why either. Giselle, our doctor in Vermont, was positive. We spoke to her several times and gradually some hope of keeping Jack alive for longer crept back into our lives again. However we still dallied, torn by indecision – were we doing this for Jack or for ourselves?

Giselle’s recommendation was two cycles of medium dose Chemotherapy that would have the same impact on his blood counts that the Etoposide was having, but it would be given with Velcade, a radiosensitiser and something Jack usually responds well to. There would be a three week break during which we could return home. Thereafter we could participate in a new trial she was opening on March 1st – a drug that has proven 400 times more effective than Vincristine - a chemotherapy drug – but one that is non-toxic. This is what we were looking for – a treatment that looked effective but has no toxicity and would allow the blood counts to recover.

And so almost two weeks ago, Jack and I flew back to Vermont. Scans here show the disease has progressed further on the Etoposide. He began the first cycle of treatment with minimal side-effects of sickness and diarrohea for one day only. He has however become neutropenic, negating our flight home which should have been on Tuesday. Flying with no immune system would have almost certainly bought us a stay in hospital at home with infections, and we would probably have missed the start date of the second cycle on February 2nd.

We have not, however, been lonely – returning to the Ronald McDonald House was like re-uniting with some long lost friends. We have had visitors every day and realise again what really true, special friends we made during our stay in Vermont last year. We appreciate those friends so very much now!

A huge thank you to British Airways and to Jet Blue for making our journey very special! The upgrade to Business Class meant Jack slept well during the flight and had lots of energy during our wait for the connecting flight at the airport. We had been up since 4am, the journey finally concluded midnight UK time! A special thank you to Robin Hayes from Jet Blue, and to all the British Airways staff both on our flight, and those not on board, but all of whom made this trip [and our last trip home] very, very special. Thank you also to Special Services at JFK!

November 29th 2008

Two weeks ago today Jack found himself admitted once again to hospital. He had slowly become unwell, finally resulting in severe and constant back pain and abdominal pain each time he used the toilet. More frighteningly, his urine was stained a dark shade of red through blood being passed.

The mother or father of any child involved with this unpopular society - cancer, will recognise the chill that strikes the very centre of their being, at the merest indication of something abnormal. I was in Ireland when Jack was admitted, trying to provide support to a mother who has been beleaguered with the frailty and infirmity that old age brings as it hastens towards it’s conclusion. A new flight home was swiftly booked, and I appreciated greatly several hours spent with Robert and Ruth, whose steady calm and strong faith provided reassurance that God remained in charge. And later that day, a diagnosis – Cystitis.

The days that followed were exhausting, for Jack, for all of us. Richard and I took turn about each night in hospital, balancing work in between. At one stage I began timing each occasion Jack tried to use the toilet – every 7 minutes, night and day. The following day things improved to every 10 minutes, then it became every 5 minutes, and each time it was difficult to work out what was the most painful part for us, watching him scream with pain as he tried to pass urine, or seeing the deep red stain in what he passed. After 6 days of this and no obvious improvement, a urine test sent to Gt. Ormond Street Hospital finally showed the underlying cause: B K Virus, a virus that occurs in those with suppressed immune systems. Jack had been off his medication since being admitted, although we had been considering re-commencing these. Where however, the finger had been pointed at the Cyclophosamaphide Jack has been on, it seemed odd it could cause this, as the dose at 50mg a day is extremely low. This later diagnosis pointed heavily to the Rapamycin Jack has been taking. Rapamycin is an immunosuppressant, but recent trials in Texas show it can be effective in killing tumour initiating cells.

Since starting treatment for B K virus, he has improved greatly. He is eating much better than the weeks before he became ill, and has become extremely vocal (in the happy sense), and is now officially ‘out’, and in play for school again, next week! He and his sister have compiled their Christmas lists, and top of Jack’s are two things he definitely won’t be getting this year. The first [and I have absolutely no comprehension of where this comes from] is a caravan!!!!! I suspect he means something similar to the RV’s that would be camped on the approach to North Beach in Vermont.... and second, a mini-fridge! I think he’s been watching too much of The Simpsons while in hospital. Maybe next week I’ll explain the ‘credit crunch’. This week we’ll stick with times tables!

This Wednesday and Thursday see us back at Gt. Ormond Street Hospital. Jack will have his next Mibg scan on Thursday. We still need your prayers, please remember Jack this week.

November 13th 2008

Once again, we have been remiss about updating the website. The intention is to update every two weeks, but life has been chaotic. Both Richard and I are back to work full-time, but are also balancing weekly platelet transfusions, housework and fundraising in between three lots of homework and answering emails.

Jack is enjoying being back in school, but there has been the odd morning when he has woken up tired, suggesting he have a day in hospital instead of school. He is behind in class, having missed most of the year. This we hope, is relatively minor – there is still time to catch up, and his teachers at Christ Church have been outstanding in their efforts to gently assess him and provide suitable home work to encourage him along.

This weekend saw us travel up to Wales, for the seventh birthday party of Connah Broom. www.connahsappeal.co.uk. Connah also has neuroblastoma, but after chemotherapy showed little impact on his disease, his grandparents Jim and Debbie took the step few of us are brave enough to contemplate and turned solely to alternative therapy and organic food. They recently travelled to Poland for scans and were rewarded by the wonderful news that the majority of tumours had probably died, out of 11 tumours the only mibg uptake was in the main tumour itself, but some areas had also calcified. Connah looked great and after a long day partying, was still dancing and running around late into the evening. The party was lots of fun and culminated in a fantastic display of fireworks. Debbie, Jim and Connah, thank you for the wonderful hospitality. Have a great day on Thursday Connah!

We have been receiving lots of emails asking 'what's next'. On our last day at Sloan Kettering, Dr. Kramer decided that Jack should be re-scanned again in December, and have further bone marrow biopsies conducted. My hopes and my prayers are that Jack has been completely healed, that he will remain clear of this disease forever. However, Dr Kramer while admitting they were astounded and overjoyed by the clear scans, felt Jack should have more antibodies, but High Dose antibodies this time, which he has never had. We are currently considering this. Jack is still very underweight at 17.6 kilos. We are keen to 'build him up' a little more before putting him through yet the hugely painful procedure of High Dose treatment. Ultimately God will be our guide. We ask for your continuing prayers that he has been completely healed.

A huge thank you to Finchley Firemen, and the whole of White Watch who are currently fundraising for Jack. They set up their own webpage when they first fundraised for us a few years ago, the site has some great pictures of the children at a younger age! They have started putting onto the site, some great items for an online auction, items up for sale, include signed football shirts, signed Wimbledon gear, signed books, mont blanc items and a few more interesting bits to be added over the weekend. Please take time to visit their website www.whitewatch.co.uk

Tuesday 7th October 2008

We've just received the results of the Bone Marrow Aspirates, these too are CLEAR. Jack is finally NED.

We thank God for this miracle, and continue to pray that Jack's healing is complete.

Tuesday 7th October 2008

A week has gone by but we still await the results of Jack’s bone marrow aspirates. All scans: Mri brain, Mri body, CT and Mibg are clear. The bone marrow biopsy is also clear, we are eager to obtain the aspirate results so we can come home. The aspirates shouldn’t take any longer than a week, it’s simply a matter of looking at the fluids under a microscope and establishing whether there are NB cells present, but I understand that laboratory have been extremely busy. Yet another phone call from the team at Sloan Kettering yesterday assures us the aspirate results will be through today.

We are overjoyed with the scan results, it is God’s enduring love and mercy that has sustained us, and one particular promise that has brought us through: James 5:15 ‘And the prayer of faith shall save the sick….’ Without doubt it is only through God that Jack is still here with us today.

Jack has been feeling great, he has had lots of energy and a busy weekend. His friend, Connor Gerber, returned to South Africa on Friday. It was sad saying goodbye. Although the House is full, it suddenly felt very empty again, there are so few of the ‘old faces’ here any more, replaced by the next cycle of children with cancer.

The Ronald McDonald House had a Block party on Saturday, which was fun. On Sunday, we met up with Giselle Sholler, our consultant from Vermont, who was in New York with her girls. We spent a few fun hours with them in Central Park, ending in F.A.O Schwartz. Giselle is one of the most caring doctors I have ever met, the attention the children receive under her care are second to none. When we first arrived in Vermont she gave us her cell phone number, so we could get hold of her at any time if we had any concerns outside of hospital time, about Jack or the treatment he was on. I have yet to find another doctor quite so accommodating. We had an interesting discussion about two new trials she is about to bring out in Vermont, one of which proves to be more effective than an ABT751 protocol. ABT-751 works by binding to a critical protein in cells called tubulin. Other drugs that bind to tubulin and are already used to treat several cancers include the vinca alkaloids (vincristine, vinblastine, vinorelbine) and the taxanes (taxol and docetaxel). ABT-751 can kill cancer cells that are resistant to vincristine and paclitaxel in test tubes. Studies in the lab show this new trial is 400 times more effective than Viscristine. We will post the papers on the JACK website when the trial is imminent.

Our flight back to the UK is on Wednesday evening, although we love New York, we are very, very much looking forward to returning home to that longed for ‘normal life’.

September Update 2008

The email box is full these days from both friends and strangers, who query the current position with Jack, concerned that we haven't updated the website in recent weeks. The reasons are many, but in simple terms, we made it our mission to at least try to begin a 'normal' life at home, and so the weeks since our last update in Burlington, have been spent in trying to achieve this. These weeks have been capriciously busy, and inevitably we would find ourselves fitting things like 'homework' or some other 'normal' duty into the time allocated to writing an update.

Our final two weeks in Vermont saw us packing, saying goodbye's, more packing and more goodbyes. It doesn't seem 6 months that that we have lived in Vermont. In many ways it seems a lot longer, longer since we left New York, since the sad and sudden loss of Richard's Dad, and the news that Sloan Kettering could no longer provide the 3F8 antibodies. We arrived at the end of Winter, the huge lake had completely frozen over with a thick and solid blanket of ice that appeared unbreakable. Ice and snow lay thick on thick on the trees and ground, I used to love looking at the frozen spidery webs, plentiful between the frozen twigs, and now, as we were leaving, the uppermost leaves on the trees were tinged with Red and Orange, the beginning of a Glorious Fall. Yet our best memories are of barbeques on the beach while the sun set over the lake and the not so distant horizons of the Adirondack mountains.

Then, there are our friends. We are blessed by the many friends we found during our time in Vermont. By our friends in New York who made time to visit us now and again Vermont. Special friends, who make a difference in one's life. Who understood as much, if not more, about life itself. Many of whom we would later find out, had suffered painful and chaotic times in their own lives. Leaving those friends was poignant, sad. Leaving, left me wondering why… why do people like these come and go in our lives.

I am convinced that when pain and tragedy enter our lives, God provides us with the tools to help us through. Without the many friends we have made along the way, the journey would have been intolerable. Not only have we made it so far, our lives have been enriched by these special people, by the compassion and understanding we have found in them.

And so to Jack. He tasted normality. We arrived home, gradually unpacked, the children started back in school and Jack wnet back to see the UK oncology team before he too started back to school. We were very heartened by the fact our doctors now seemed willing to work with the medications we had brought back with us, some of which had not been used in paediatric oncology in the UK before. Jack although tired, and doing mostly half days, found renewed energy , animated at being able to attend school once again. This was to be short-lived.

We left Vermont following radiation to Jack's femur, the last remaining spot of disease. His blood counts were too low for any further chemotherapy and so there was little to be achieved from conducting yet another Mibg scan, to establish whether the disease on the femur had been destroyed by radiation. Many people of great faith have been praying for Jack over the past few months, my faith too has continued to grow. It was a relief to place Jack in Gods hands and to let him guide the way.

At the same time, an email arrived from Sloan Kettering. Tthe 3F8 antibodies we so desperately needed back in February were once again available, did we want to bring Jack back for scans and consider antibodies from there? Antibodies offered a non-toxic way of clearing any minimal residual disease that might remain, and we were keen to establish what Jack's position actually was as his liver functions were proving erratic and his LDH had shot through the roof. Richard had started back at work, and a so a decision was reached that I would take Jack back to New York the following week, Jack would undergo a week of scans and God would be our guide. IF there was disease remaining, he could have the High Dose antibodies, or if he was clear, there was an option to go back onto the low dose antibodies. This idea didn't enthral me, Jack's multiple relapse last year was while receiving low dose antibodies. It also concerned me that Jack was required to stop the medicines we'd brought back from Vermont for the next 2/3 weeks as Sloan did not know if the antibodies [if he needed them] would react unfavourably with the meds. On the other hand if the spot in his femur was still present, here was a chance to potentially eradicate the disease completely and without toxicity, allowing his blood counts to recover simultaneously.

And so, here we are in New York where we arrived two nights ago. We spent Wednesday collecting Contrasts, SSK1 and seeing Anne Marie, the teacher on the 9th floor at Sloan who Jack loves. He was excited to find Connor Gerber back at the House, for the same scans. Connor and his Dad had flown in from South Africa a few days earlier. Yesterday saw Jack have the full body MRI which seemed to last forever. The MRI is incredibly noisy and inevitably Jack started to cry. He had fallen asleep for the first half, but was woken by the efforts of the nurse to infuse contrast through his port, and that's when the tears began, half way through the scan, which is never a good idea. The thought of having to stop it and start it all over again soon placated him. Speaking comforting words had the opposite effect I'd hoped for, only intensifying movement and upset. I found myself wishing intensely that instead of speaking so harshly, reminding him he would have to do it all over again if he didn't stop crying, that he could just be like Connor and Rhian, that he would never have to go through these scans again… a stupid wish as these scans are the only way of monitoring the disease, yet we'd had them done only weeks ago in Vermont. CT scan followed, then Mibg injection. The blood counts were worrying. His liver function was high, despite being off his medicines, and his LDH was soaring again at 382. High LDH can indicate rapidly dividing cells, which in cancer patients one could fairly associate with potential new tumour growth.

Our Mibg scan was scheduled for 9.30am this morning, followed by bone marrows under general anaesthetic. Further MRIs were to follow in the afternoon. We do not have the official report yet but the Mibg screen showing the final scan looked clear and is enough to keep me elated for the whole weekend! "all things, whatsoever ye ask in prayer believing ye shall receive;" Matt 21:22 Perseverance is praying until the answer is manifest, until it has become an accomplished fact.

We continue to persevere in praying for Jack's healing, for an NED [no evidence of disease] verdict next week, and would ask gratefully of all who are praying for Jack, to continue to do so in the months and years ahead.

When the official results of the scans are finally through next week, we will update again.

Yvonne and Jack.

Monday 18th August 2008

Jack is coming home. These are circumstances, the terms and why we remain full of hope.

The scans and bone marrow procedures of Wednesday’s extended session of enquiry into Jack’s body have been concluded. Jack did well and maintained his composure throughout the day’s scans. Until, that is, he finally woke at 4:00pm from the anaesthesia. The little squish, quite rightly, demanded all manner of pseudo-food and, yes, he was furnished with one box of poultry lumps; some starchy, fried, longish things and a liquid purporting to be related to a citrus fruit. Oh and a plastic toy. Regardless of the ingredients something like a placebo effect occurred at the mention of McDonalds and Jack calmed down and came to.

Connor and Rhian had found fine company for the day and we joined them early evening. Jack had regained a sufficient sense of self to become engrossed by a movie and the wonderful company of the Owen family whose friendship has become very significant.

The tests, themselves, suggest the neuroblastoma cells have been vanquished in almost all areas. One fortress, one hive of cancerous activity still remains.

Previous scans always and predictably produced a glow, an aura as the isotope collected about the clusters of neuroblastoma cells. This time there was ambiguity, an indistinct presence. Almost, almost like a patch of starlight there was a faint patch of illumination that vanished under your direct gaze but continued to taunt the edges of sight.

There was a genuine comment from the Doctor about the possibility of the slight flare being as a result of the equipment’s erroneous collection and portrayal of data. It helped but the chances of a phantasm being present in the spot most likely to harbour a remnant of cancer erased the realism from the well intended suggestion.

There’s not much obvious poetry in cancer and the post MIBG report including the phrase, ‘remains in distal right femur’, is never likely to challenge Shakespeare or Kipling. However, dispassionate the type face on the report there was no doubting the human and emotional consequence of the words true nature. The clinical abbreviation for the paragraph’s content thus far: - CT scan– clear; Bone Marrow – clear; MRI scan – clear; MIBG scan clear, except the aforementioned, right femur.

The tide of the cancer has, without doubt, been reversed. The cancer’s waters seem so receded from their former shore-line that their ability to overwhelm, to drown, might almost be forgotten. You could measure the shrink of the cancer’s grip and take comfort in comparisons, but such a philosophy would simply belie the speed with, which the illness might gather strength once more. For without the continuation of further chemotherapy and Nifurtimox the cancer will escape the temporary custody of this regimen.

So now the new plan and how we change the guards.

Jack is going to have radiation to the spot in the femur starting Tuesday, (slight presumption as we haven’t spoken to the Doctor yet but Yvonne will be sharing a van with him tomorrow as she joins a six person team from UVM to run the 100 on 100 VT – we will start radiation on Tuesday).

Thereafter – probably – 10 days of radiation and a couple of days of tiding up care, we come - home. Sounds simple I know, there must be something that I’ve forgot’nnnn.........................ahh, yes, the drugs, the cancer’s new wardens......!!!

We are going to try Jack on, (pause for breath......), Celebrex, Cycolphosphamide, Lovastatin, Rapamycin, Gossypol and Tetrathiomolybdate. And NO not necessarily in that order. At the end for those families who want to know the doses and a bit more there is a schedule of sorts.

We came to Vermont with our hearts and our heads believing there to be one last opportunity for Jack to out-run this foe. We’ve made this mistake before. The nature of the race is not one of a sudden found freedom defined by a preordained finishing line. Jack’s role is to out-pace his adversary. Jack wins each day the race continues.

The photograph of Jack by a luminous green wooden hut epitomises the unexpected quarter, from which, help comes. A country road remote from our origins and circumstances has been transformed into an industry devoted to raising funds for research into Neuroblastoma. The Owens’ Candy Shack, founded by children; operated by children; powered by their want to help has become a bright beacon of aid.

One summer in Vermont a hospital, a house, a community, new friends, all combined to give Jack and our family gifts of hope and of revival powerful enough to for us to deny the past’s scars, renew our faith and look forward to a future. A borrowed phrase from strong friend who has founded a stronger friendship with us simply states, “Never give up.......ever..”

The smallest of words is a child’s, is Jack’s, will and want for life.

8th August 2008

Time seems to have flown since our last update, Two more beautiful children were taken from us by this disease on Friday August 1st. Please take time to read their websites: Katie who we met for the first time in Vermont; http://www.caringbridge.org/visit/katiekrize and Gustavo Alexis who we met at Chrismtmas 2006 in New York. http://www.caringbridge.org/visit/gustavoalexis.

Since the last entry, Jack finished the final cycle of chemotherapy on the Nifurtimox study. He remains on Nifurtimox until a new plan has been devised. That will happen after scans.

The chemo hit him hard once again, ending on Friday, the following Monday Jack was exceptionally tired and by Tuesday he was ill. We tried, as usual, to keep him out of hospital, but once again a fever set in and we had no option but to make the call. His ANC was zero, (no immune system) and he was admitted once again to Baird 5 where he took up his favourite position in bed with TV on, lights out and surrounded by DVD's from the ward playroom.

I am always intrigued by Jack's stance when he finds himself in a hospital bed. His first request is always for a Thomas Tank video or DVD. Second request will be Star Wars or Scooby Doo…. But Jack out-grew Thomas last year. Our website displays the intensity of his love for Thomas the Tank Engine when he was first diagnosed at 3 years old, and this love remained zealous until last year when he finally threw out the Thomas video's at home. I can only assume he finds comfort in associating the hospital bed with Thomas and his painful early hospital days.

To all of you who send Jack Thomas cards, please don't stop – he does still love to get these, some of the handmade ones he has received over time are treasured items. Nevertheless, I believe Star Wars has become the new Thomas!

Jack remained in-patient until Friday evening. Once again, we were keen to accelerate his discharge, knowing too well the huge cost of a hospital room. Getting home to fundraise again has been playing greatly on our minds, with substantial outstanding bills to be met. Once again our doctors assisted as much as they could and Jack returned to the RmcD House Friday night, going straight to bed. By Saturday he was still tired and sickly. However he had a big incentive to recover quickly… beginning on August 3rd was Camp Ta Kum Ta – a very special camp for children with cancer, which the majority of his favourite nurses would be attending.

By Sunday morning, he looked and felt better and still wanted to go. One of his nurse practitioners had bought a huge water pistol with a back pack containing a water canister, which was to accompany him to camp for the 'night raids'. This was given to him while still in-patient on Friday afternoon, where he found the strength to engage in some rapid fire on a few willing nurses, egged on by Dr. Sholler and Childlife.

Sunday however was a busy day… a friend , Kris Owen, had organised a stall for us at the Dragonboat festival held annually on the waterfront to raise funds for research. Beginning at 8am we would be selling jewellery made by the kids and the Mums. Kris also provided some great Tshirts bearing the slogan 'never give up…ever'. The back had a small logo to indicate the Tshirt had been purchased to raise funds for Neuroblastoma research. At $20 each, these were a sell- out and made the day a complete success. At 11am I left to see Jack off, nervous, as this was the first time he would ever be away from us. We placed him and all his medicines in the capable hands of his nurse… as he walked to the bus he was clearly the smallest child there. Another little boy walked beside him, putting his arm around Jack's shoulder - then, I knew he would OK. As the bus drove off, Jack gave us a quick glance, then looked away at something more interesting going on inside the bus. We didn't have long to miss him however… By Monday morning, he was back at hospital requiring a Platelet transfusion – his Platelets had dropped down to 4000. Today, Wednesday, he was again back in hospital, this time requiring both blood and Platelets. From the huge drop since Monday, he is obviously having a great time.

Scans which were due this week, will now happen Wednesday August 8th. Please continue to keep Jack in your prayers. Thank you all for the many positive messages we have received over the last few weeks.

17th July 2008

Today has been an incredibly sad day. This morning Jack's friend, Dustin Cobb passed away. (http://www.caringbridge.org/ga/dustincobb). Dustin very recently turned 10 years old, but had seen in recent weeks, some progression of disease in his spine. He has been battling this disease for 8 years but has bounced back time and time again when doctors had given up. Many speculate that a child can only survive this disease for 5 years, Dustin proved stronger than that. He was a very special and loving boy.

Recent weeks for Dustin have been spent inpatient at UVM with blood counts that had grown stubborn, refusing to bounce back. Jack had been continually asking when Dustin was coming out of hospital… unfortunately he remained inpatient over Rhian and Jack's birthday, and it seemed kinder not to mention his birthday or the fact we were taking the kids to Pizza Putt, to Dustin, as he would still be in hospital. A few days later Dustin was discharged. It lasted for only one day, his blood counts dropped and he was re-admitted…. But that one day he spent shopping with his mum, Barbara, for presents for Rhian and Jack. We were amazed that evening to see Dustin back at the house, in his wheelchair and armed with presents for both Jack and Rhian. It was with much sadness that I commented his day of freedom was spent shopping for our kids, but Barbara's reply was to inform us that was what he had wanted to do. Dustin we miss you very much.

Our prayers are that Dustin has now found peace and that Barbara, Michael and Bryan will be comforted and carried through the pain of loss. Please pray for this wonderful family. Please pray also for the Krize family, another family who we have grown fond of. Katie's disease has also progressed and she has been taken into a hospice. Katie was in remission for 6 whole years when this awful disease came back with a vengeance. Please visit her website at http://www.caringbridge.org/visit/katiekrize

12th July 2008

"Keep your faith in all beautiful things; in the sun when it is hidden, in the Spring when it is gone."
Roy R. Gilson

Jack's treatment has stayed on course so far, and there continues to be the good times and the not so good. The pattern is almost predictable now, a week of chemotherapy, blood counts crash, and during the following week he will gradually become more tired, sometimes getting a fever (requiring a stay in hospital), and very occasionally he will get through the week without a fever. Undoubtedly he will feel pretty poorly for a few days, but as the blood counts gradually return, he too begins to feel better. Inevitably the blood counts return to the required level on the same day he's due to start chemotherapy all over again, and so the cycle begins again.

This has been one of the 'poorer' weeks, beginning with Jack feeling constantly tired, sleeping more and more throughout the day, the sickness crept in on Wednesday evening. On Thursday morning he woke with a fever. I had hoped very much we could keep him out of hospital, the weather was beautiful and Connor and Rhian were around during the days. I prayed hard the fever would leave – and those prayers were answered, within 30 minutes the fever had left, however the sick feeling remained and he was inordinately tired. The past 5 weeks of chemotherapy and Nifurtimox were exacting their toll with frequent blood and platelet transfusions being required more than usual. Only a few days earlier, Jack's Platelets had dropped to their lowest level ever at 3 (normal level in a healthy child is 150, Jack's usually are allowed to fall to about 20).

We had to inform the hospital the fever, which resulted in admittance to room 519 at UVM. This is a necessary precaution when his blood counts are flat (his ANC was 0 meaning he has no immune system) as the fever could be the onslaught of infection, and antibiotics given at the earliest possible stage could prevent a raging infection later in the week. We were disappointed for Jack, as we had intended to go camping with another family that had stayed at the House – the Saunders family – whom we have grown close too. Isaiah Saunders is 17 years old and is now in remission from Hodgkins Lymphoma. (http://www.caringbridge.org/visit/isaiahsaunders). Isaiah's family still came, pitching a tent up in North Beach camp ground, right beside the beach, and Connor camped with them over the weekend.

Jack was eventually discharged when his blood counts began to improve, but the sickness remained with vomiting and diarrohea.

For the past few weeks I have begun reading a book by Andrew Murray, given to me by a Isaiah's mother. Murray was born in 1828 and became a minister at a young age. After illness interrupted his ministry for over two years, Murray received a miraculous restoration of health through the prayers of God's people. He turned to writing and quoted 'I have been convinced anew of that which the word of God teaches us in this matter'. 'I can no longer keep silent'.

This book is one of the most compelling I have ever read. I rarely find time to read these days, but the subject matter 'Divine Healing' is one that is very obviously close, and so I have made the time. A huge problem for many in their faith, and I include myself in this, is thinking we must ourselves attain a high degree of knowledge and perfection before our prayers will be answered. The book points out it is not by our own power or holiness that we obtain these graces, but by a faith quite simple, a childlike faith which knows that it has no power or holiness of it's own, and which commits itself completely to Him who is faithful, and whose almightiness can fulfill His promise.

We need your prayers, Jack needs your prayers. I often repeat myself, and continue to do so, your prayers are the most precious gift you can give us. We need you to have faith in those prayers. It is only as we feel our own powerlessness and expect all from God, that we realize the glorious way in which the Lord heals sickness by faith in his name.

Update, 1st July - 5th July 2008.

Update is a peculiar word amongst the plot of Jack's life and the lives of children like Jack. It might be better to use a word like scene. But I've lost count of exactly how many scenes have gone before. The plot line maintains a consistently invincible villain and there have been a multitude of heroes and heroines to accompany Jack along the way. Updates can be a matter of progress; a measurement like a growth ring within a tree. Updates present change, confirm a status quo but at their worst articulate an ending. 'Update' it sounds too robotic; too automated to headline a few days in a life compressed by cancer, Neuroblastoma.

2005: Act 1 - diagnosis, Act2 -treatment in the UK, Act 3 - 3F8 MSKCC NY, Act 4 - CNS relapse and treatment MSKCC NY, Act 5 - systemic relapse/resurgence Fletcher Allen, VT.

2008: More lyrically then - let's call this: Act 5; scene 5 - day 2.

'The Lead' lies in a bed of the infusion* bay on floor 4, Fletcher Allen Hospital, Burlington, Vermont, USA. The chemotherapy has just finished and a pale yellow bag of platelets hangs - dripping at a two second rate. A strange moaning sound emanates from Jack. Could its cause perhaps be some imprecise pain? But where there might have been consternation or worry on the faces of nurses there is, instead, a series of grins and smiles. Clues for their lack of concern might come from describing headphones linked to an MP3 player. Furthermore one might just make out words sprinkled amongst the moans. Words such as, "......I wanna be a rock star......" and "......down in the deep blue sea". Jack's attitude contradicted the actual talent on display; as he sang with gusto and a complete lack of self doubt, (perhaps he will be a rock star).

Today is Jack's 7th Birthday and his want was for a second-hand I-pod. Note 1) not a new I-pod but a second-hand one; Jack was very specific. Note 2) when purchasing a used device with an internet connection check for content and existing e-mail accounts. For instance I was struck by the bold marketing and impressive claims for a blue pill, (wish cancer drugs were as effective), Jack has little need for.............................I heard that Yvonne........

Thank goodness for factory reset, anyway, this instrument was the cause of the impromptu mumbled solo and consequent laughter. Jack's voice is quite nice normally, however, the muffling effect of headphones and a happy 'Nifurtimox-slur' provided him with the potential to win any pub singing contest.

5th round of chemotherapy this week Nifurtimox stopped for 48hrs in order for memory and wobbles to reset. Steroids stopped yesterday. Jack's weight is now 16 kilos and holding.

Rhian and Jack celebrated their birthdays, with friends, at Pizza Putt, (not a misspelling and many thanks to the manager and staff who were fantastic). I believe the token tally for the night was Jack 586 and Rhian approximately 700. There is a downside to the arcade and its entertainments. Following several hours of fun and food there comes -Anguish! For those unfamiliar with the venue tickets accrued through gaming can be exchanged for prizes. Decision making is not a forte of the under 10s and the Browns are no exception...." The yellow frog and two power balls and.........or one power ball, a wrist band and a......"

Eventually something had to give - me. I exercise draconian powers to bypass the democratic indecision and dictate a selection. They face a display, which must be considered an Axis of Enticement. I justify my War on Trivia as necessary to thwart the mental stress Rhian and Jack suffer juggling the relative merits of rubber fish verses matchbox cars verses vivid candy. Unpleasant, I know, but it was for their own good.

The less obvious anniversary, implicit in Jack's birthday, involves a tipping point of sorts. Jack has now passed a way mark. A small highway 'Scenic' marking Jack's 7th birthday might say, "Looking back, you can observe amongst the terrain of Jack's life a border. You will see a border marking out where he began to journey with cancer."

Often the journey is conducted as if in a tunnel with no landmark by which to measure progress. Whatever transition might be taking place in Jack's body remains buried, hidden. Attempts to interpret the symptomatic Jack and then gauge the reality inside can be like predicting the weather from seaweed or cow's stance.

Only at set intervals is there ever a beam of a precise enough frequency to illustrate the cancer's exact status. The only, consistent, illumination that accompanies us is to be found within a small circumference of the here and now. A light fuelled by the energies of Jack; the energies of friends, family and carers. Much of the time this is the best way to live with Jack's cancer as it reflects the ethos of one day, one moment at a time - relish the real; don't worry about the theoretical. But sometimes the self imposed 'Flat Lander' mentality receives a boost into a third dimension, offering a vantage point from which to gaze, to wonder and to dream

Occasions such as scans, bone marrow tests become a peak offering a vista of potential paths ahead. Turning one's head to the road already travelled demonstrates something else. Jack's birthday offered an elevation that clarified how Jack has now spent more than half of his life journeying in the Land of Neuroblastoma.

Embarking on the journey we were heavily laden with hope. Hope that time and the power of medicine might stretch the cancer's elastic embrace to a point that it might snap and fling Jack into a clear and unobstructed future. The same hope remains and along the way our reservoir has been refilled by those we knew who would always be found at the side of the road. More precious still have been unexpected hosts in unplanned places.

The standard set piece medical battles and long rehearsed strategies have had their day, for now. We continue with guerrilla tactics to harry the cancer into submission, retreat and exodus.

All kids on any journey ask, "How much further....Are we there yet?"

Jack hasn't the impatience to query the length of his road.

*Jack gifted a wonderful spoonerism with perfect timing today. Height, weight etc by Jess at the hospital - all done and off to the nurses' station, the infusion bay, for chemo.

Jack, "Right. So. Now off to the confusion bay".

[No offence - in reality there is complete order...]

Update, 18th June 2008

Father's day.

The best days become such when people, places and events combine through an unexpected prism; a lens that provides their chaotic wave a sudden clarity. At some point alchemy, of sorts, occurs and you realise a sum greater than the obvious parts. Alchemy, I use the word because it seems to fit somewhere between the worlds of art and science. A hybrid of an activity part designed, part conjured to produce gold from a collection of base materials. The recipe for father's day seemed fairly formulaic and involved the blending of four key ingredients:

One 6 year old - boy - small but with eyes filled with future prospects.

One 8 year old - girl - with an everlasting energy source of self-interest and fun.

One 12 year old - boy - a joiner, canvas and precious fabric.

One Mum.

It began with cards. Cards that had been made and that were etched with felt-tip signatures. Signatures of distinction regardless of their legibility.

Pancakes.......

Then there was water and sunshine and canoes. The sounds of fierce debate about the effectiveness of stoke. But louder still was an unfettered laughter 'stone-skimming' the surface of Waterbury's reservoir before sinking into the ears of fellow boaters. Free ice-cream. Playing catch upon a green hill with a view.

Departure from Waterbury involved the children's' resigned acceptance of a father's decision to turn left and 'explore' the long way home. Scenery seemingly having an impact akin to that of green vegetables amongst the more tasty morsels upon a kid's plate. Reminding the trio of the special beauty of the environment was as constructive as pointing out the value of vitamins and fibre - a poor compensation to children for their extra in-car-ceration.

There was real food, an unplanned diner, at a cafe where the orders were taken by back bent staff through windows that opened more briefly than a wicket in a cell door. However, the food met with universal approval. Spaghetti splatters testimony to the artless communion of Rhian and her fork.

Late evening and the sliding sun's ladders shone around and through the white clouds and we shared sunglasses to comprehend its true hue.

There was no real alchemy; there never is - the gold is there all the time you just need a little light for it to glitter.

Monday, Jack's platelets had fallen to 3 and his legs provided ample evidence of the previous day's activities. Plum patches (bruises) decorated ankle and shin. Obviously neutropenic but no fevers so far... (Wednesday)....and the G-shots are tolerated without comment.

Jack's alter ego - 'Crazy Legs' - is trying to make an entrance. Slight wobbles and spacey silences are present this morning, may have to consider dropping a dose or two of Nifurtimox in order to prevent 'Crazy Leg's ' total possession of Jack.

I attempt to remain sanguine at Connor's newfound angling abilities. Despite many attempts over several years to show him the necessary disciplines involved with the sport Connor has never quite appreciated my philosophy, ' that actually catching a fish is ancillary to the art'. Now he returns on two consecutive days to report his tally of 'rock-bass'. I feel quite useless - superfluous. I just hope he can cope with rejection when eventually but inevitably he fails to land his quarry.

Yvonne will be posting an overview of a mini Neuroblastoma conference held at Fletcher Allen/UVM. The keywords to the discussion - personalized medicine. Please see www.j-a-c-k.org in the next few days in order to comprehend the strategies being employed to determine the exact nature of Neuroblastoma cells obtained from patients - point being, 'my Neuroblastoma is different to your Neuroblastoma' ergo, 'what works for me, may not work for you.'

The aim is to discover the specific vulnerabilities of those cells and, therefore, proceed to exploit those characteristics in order to compromise the disease.

........... many thanks for everything Richard, Yvonne and Jack ......................

Update 8th June 2008:

"Rhian,what inspired you to do the run?"

" Mum............oh and there's Ben and Jerry's at the finish-line."

9:30am saw Rhian and Yvonne taking part in a 5k run organised by 'Girls on the Run'. Several thousand girls and several hundred parents met at the sports complex of The University of Vermont. A few minutes after 10am the' field' was off in a shade temperature amongst the high 80's.

Jack and I watched as the drama unfolded and the pictures say more than I possibly could, except:

Every runner wore the number 1 on their vests.

Rhian was initially misled as to the aerodynamic advantage presented by her headgear.

It's not all about Cancer; it's about life.

Update 5th June 2008:

Jack has a habit, unnecessary at times, but an act of comfort and communion. Jack has breakfast with Connor and Rhian. Now Connor and Rhian are shepherded, meaning herded, ( wish we had a dog sometimes!), down to the kitchen at 7:20am in order that some semblance of timeliness is maintained. Then out the door for school. Often Jack could remain in bed and perhaps should remain in bed but, without fail, his bobbing bald head appears around the kitchen door just before the less energetic arrival of his siblings.

Today Jack stayed in bed curled in a tight ball. The night had been an unruly one; twice I had woken to discover children devoid of covers or smothered in covers silently ransacked from one another; arms and legs postured as if by a deviant mannequin dresser. But as Connor and Rhian dressed Jack's body language spoke of his resentful protest at the day's agenda. Knowing he was nil by mouth he chose to remain alone, prone and protected by the sheets.

Jack's extraction provoked no resistance when, at last, it could be delayed no longer. Rather it was as if we unwrapped a wound. What self heeling Jack had achieved during the night was torn asunder by the beginnings of what felt almost a violation.

Dressed and washed Jack's imposed fast was made more intolerable by our hypocritical insistence that he drink a large quantity of liquid containing 'contrast'. [An iodine solution enabling the CAT scan to provide a clearer picture]. Anyway the contrast tastes foul.

The CAT scan and MIBG process started at 10:50am. Jack was laid on the narrow slab, swathed in blankets, then 'velcroed' in for extra security. The CAT scan passed within a few minutes and we re-grouped for the lengthy MIBG procedure. Our morality tale for this scan had been selected by Jack at the Ronald McDonald House earlier. As the plates began their stuttered circle about Jack's head so did the adventure of, 'Scooby-Doo and the Deep Sea Diver'. I don't blame the author but by chapter 3 my voice had stilled Jack into slumber leaving us to concentrate on the real drama unfolding on the screens inside the room. If you don't want to know the outcome of Scooby's escapade skip to the paragraph below, ( " ….and If it weren't for you pesky kids").

At about 12:45pm the scan was complete and we asked to review the images – without commentary or opinion. There was still a flare in the background brightness of Jack's right leg and it seemed that at the most basic level one could assume the cancer had survived the last 7 weeks of chemotherapy and Nifurtimox.

Back to level 4 for bone marrow. The dinosaur room became quite crowded; us, our nurse, child life, doctors and an anaesthetist. The anaesthetist was brilliant – he came armed with conjuring tricks that reduced Jack's focus from the hectic crowd to tactile sponge balls and silk tissues. The anaesthetist's art of distraction continued until Jack's eyes glazed and half-shut.

25 minutes later we re-entered the room and Jack lay sleeping or rather just waking with loud objection to the oxygen tubes irritating his nose. I won't dwell on the next half-an-hour - Jack provided evidence of his resentment for what had happened and how he felt. Jack couldn't keep the 'monalogue' up for too long - he hadn't the stamina - and he happened to request a boon that could be fulfilled. ' Milkyway….Milkyway….' Child Life answered the call, although the chocolate's brown wrapper, as opposed to the U.K.'s blue wrapper, did threaten the sudden détente.

But what now?

The preliminary opinion:

The therapy has reduced the cancer's spread. Some areas, which did show-up in the April scan are now 'clear'.

A few different options are open to us; new drugs are becoming available, but staying on course and continuing the current regime seems the best option for the time being. This will take another seven weeks. We hate the affect the Nifurtimox is having on Jack in terms of dis-orientation, loss of his short term memory, but this seems to be slowly killing the cancer.

The bone marrow results will be back by Monday, these should help us make a better informed and definite choice as to which path we will follow.

Update 4th June 2008:

Wobbles, fever, weight loss, tears and giggles – deeds, regress and progress during recent days.

Memorial Day was part spent at the matinee performance of Indiana Jones' latest wheeze. The Roxy, in Burlington, played host to an attentive Jack who asked the relevant question at the relevant time, "Should I hide my eyes now, Dad". The potential for Jack being witness to the entire exploits of Mr Jones seemed doubtful due to the frequency with which the question arose. However, I never did actually see hands cover eyes and at the film's conclusion Jack analysis of the movie's narrative was more detailed than mine. Odd thing though, I think Jack was the only child in the audience; our fellow film goers were mostly my age. Rain accompanied us back to the Ronald McDonald House.

36 hours later a fever began. Neutropenia had sent out its invitations to lonely and incidental bacteria everywhere. Bacteria, never shy about an invitation to inhabit the body's repressed immune system took up the offer, 'to party at Jack's, to get comfortable, settle down and become a family. Heck, raise a commune!'

It was inevitable that Jack was going to be admitted. Wednesday, Jack in pain and with an onset of diarrhoea our route found its way into room 523, Baird 5. Antibiotics and pain control began. There was a torrid 48 hours before the medications began to kill/control the bacteria. Jack didn't want to eat, drink or play and it was difficult to communicate with him. Jack's speech had withered into whimpers that expired as they left his lips; whispers with insufficient energy to cross the inches of space between our heads.

Three signs were erected inside the room. Signs intended to hint at Jack's mindset and tolerance. The signs were titled, "Ask me the Thumb question."

• Thumbs up meant – I'm fine; laugh, joke, tickle.

• Thumb sideways meant – I'm ok; ask me how I am but quietly and be gentle.

• Thumbs down meant – I'm Sad/Sore; be very, very quiet and very, very gentle.

The thumb, Jack's most treasured possession, (right thumb – the left one tastes yucky), well the thumb stayed down a lot.

Toilet humour and Big boy's Uno. Toilet humour is first to get a giggle. Toilet humour is quite easy actually; the setting provides a natural source for stupid antics. Jack panicked from sleep by the suddenly noticed pressure in his bladder induced by the IV's sly drip. You equally and suddenly roused from a sleep you swore was impossible given the narrow bed of nails provided for your comfort. The scramble for the 'pot' begins. A pot you cleverly positioned two hours beforehand so as to be instantly available in such circumstances. But the pot has its own agenda and it relocates like those stones in the desert that move by themselves. So said pot is now absent from the convenient, idiot proof – 'planned position A'. Jack a marionette suspended by IV tubes and rendered more akin to a puppet by a bed induced bouncing hop as he holds on while I hunt for the retched container. Then man and boy get their act together and mission is accomplished. I adopt habitual pretence at losing my grip on the vial with the prospects of the pee yet ruining our teamwork – giggles spill into the room. Camaraderie is almost always born of an accomplishment that necessitates parties succumb to a degree of mutual grubbiness. Indiana Jones eat your heart out.

Uno – big boy's style, (think wrestling announcers voice, now say it again….Uno – big boy's style!....better) - is not about camaraderie. Seven cards down; best of three, a dollar to the winner. That's the challenge and it invokes a Zen like stillness in Jack. Eyes previously unfocused, narrow. Words to difficult to muster become barked, total control, "Plus 4, change to yellow". Jack learnt this game from a master – Ann-Marie - teacher at MSKCC, (you know who I mean). Actually the money gets a bit vague at times but at the end of Jack's stay the five dollars pinned to the notice board were his. Jack won fair and square not by winning the game but winning his freedom, winning his way home.

Sunday - Jack got out.

Weight and wobbles. The fever, diarrhoea and medications have crashed Jack's weight. 14 kilos yesterday. Wobbling occurred again today. Jack is lucid but finding it hard to control limbs and balance at times.

Now it's an eve, of sorts. Tomorrow will involve MIBG and CT scans and bone marrow biopsies. Jack knew of the scan but we'd left the bone marrow topic unsaid as it has become a trigger for much anxiety. Unfortunately the subject cropped up in earshot and the news reduced Jack to sobs. Nine weeks ago we saw the cancer's tracery in the femur and knee of Jack's right leg; the faint spots in his left. The images, the results, the advance of the cancer necessitated the three rounds of chemotherapy Jack has just finished.

Hope.

Oh funny faces, Jack was pretty apathetic and tired leaving the house for today's platelets and pre-scan injection. As we boarded the shuttle to the hospital I suggested Jack might like to make funny faces at pedestrians we passed. I demonstrated one or two grotesques and Jack took up my mantle with gusto. Smiles and giggles buried the earlier sadness. There was a slight deception practised; meaning the bus has darkened windows rendering the passengers mere shadows. However, if you should glimpse a small demon beaming at you from the number 11 shuttle, do not be afraid for he is in fact an angel.

26th May 2008

The last week has been unusual in so much as Jack has felt well. Really well. Cheerful, funny, big appetite and lots of smiles. The five days of chemotherapy passed without significant incident. There was the odd bout of sickness but each episode was extremely rapid, over as soon as it had begun. And Jack remained happy. His blood counts haven’t been wonderful but the figures themselves remain something of an abstract given the absence of fever or illness. We had some very long days at hospital due to the need for blood or platelets in addition to chemotherapy, but nothing went ‘wrong’.

Jack’s lack of sickness did create somewhat of a jam for me however. The one outlet Richard and I have, and avariciously guard, is the ability to run at some stage during the day. It is often the only time we have to ourselves, it’s certainly the only ‘thinking’ time I seem to able to find. During our early days here, we read about the Vermont marathon and how well it was supported, it would be rare to find a more beautiful place to run. (Much of the route runs along the bike path around the lake, glady, alongside bright blue waters and green mountains which tower high in the distance). However the likelihood of our ability to be able to run it seemed poor and so the idea put aside.

Three weeks ago however, Pam, the director of the Ronald McDonald House informed us she had secured places for us to run should we still wish to, at no cost to us. For a few days, the dream came alive again, but Jack’s continuing sickness brought me back to reality. The probability was that Jack would again be very ill. There was no way I would leave him with anyone else if this were the case, and so my training program was very half-hearted and short.

Two days before the marathon, the press interviewed us, and Jack was still doing well... and slowly it dawned on me that actually I would probably be running... and Jack would not be giving me an excuse to drop out after all!

My 25th – Marathon day - duly arrived. Sure enough Jack was first up and most cheerful, excited that his parents would be running “the marathon” that everyone was talking about. He evidently had no idea what it entailed, we could’ve run around the block for all he knew, he was just excited we were ‘doing it’. And having run out of excuses, I trundled off with Richard at 7.30am to join the UVM hospital team who would also be running.

That was yesterday. The temperature was in the high 70’s, and as it was my first marathon, I caught a glimpse of what Jack’s supporters who have run the London and New York marathons in past years for him, endured. But the community support was phenomenal, the whole way around. Even at mile 22 when I felt like collapsing, there were just too many people around to do so. The UVM team were all wearing little tags signed by Jack around the route. One had been placed on my number when we arrived at the start line, and here at mile 22, I caught sight of his handwriting and the big X scrawled at the end. This, a quick prayer, a sudden breeze, and I was off again – albeit slowly. How I reached the finish line I have no idea, above my knees felt like lumps of lead... someone ought to tell them their finish clock was wrong.. no way did I run in at 3.12?

Today, my legs are still like lead. The children are having a hoot watching their parents walking as though they were in their 90’s, and this is no exaggeration. It’s Memorial Day here in the US, a bank holiday, and how grateful we are that we did not have to walk the children to school at 8am!

I am praying hard that this treatment has cleared the disease once and for all from Jack, and I know God hears those prayers. I believe once again he will move mountains. The greatest gift you can give to us are your prayers for Jack’s complete healing.

Our last update seems to have lost the photograph when placed on the update page, I hope the photo comes through again... Jack lost his hair during the 2nd cycle of chemotherapy, hoping you will see the new look below.

15th May 2008

Jack had another bad week. A ‘honeymoon’ effect had been present in Vermont. An effect, which had created a seeming invulnerability to the arrival of febrile neutropenia. Well, the honeymoon ended on Tuesday morning. Warm Jack, became hot Jack and off we strode towards inpatients. Not only was there a fever but the chemotherapies’ and Nifurtimox’s indiscretions within Jack’s body had finally caused pain in the chest and stomach. Food was off Jack’s agenda and what little sustenance made it past his censorious eye and actually entered his mouth quickly left through any and all available exits.

Upon reflection Yvonne and I consider Jack’s eventual surrender to the neutropenia fairly miraculous; meaning we assumed it would and should have happened sometime earlier within the treatment programme. A pretty uncomfortable couple of days and nights followed at Fletcher Allen Hospital. The culprit for the infection seemed to be infected sinuses and broadside of antibiotics brought the high temperatures to an end. This led to a helpful debate about the prospects of release from Baird 5 ward a little earlier than, perhaps, would normally be the case. Jack escaped again on Thursday but continued to shun food. You can get used to Jack’s bony physique and the dramatic outline of his ribs, spin and hips become a sight less prominent or spectacular because of its familiarity.

But at the moment any learnt ability to accept Jack’s slight frame has been eroded by fresh weight loss. Friday confirmed the colloquial account provided by his body’s own statement when the precise language of kilo’s and grams was uttered by the nursing staff at the hospital – 15.9 kilograms.

We considered the addition of yet another tablet to the current diet of Jack – an appetite stimulant. Considered, yes, but rejected for the weekend as the stomach pain following any consumption of food was too severe.

To add to Jack’s plight the torment of the pituitary gland becoming a glutton that would be difficult to sate through small rationed measures of food would have been wrong. Especially wrong because there would have only been purpose in the exercise if whatever had been consumed, despite the pain, then remained to add vital grams to Jack’s weight – that wasn’t going to happen.

Sunday marked a definite improvement. Jack managed to consume enough food to keep a small rodent alive. The weather was great and we headed for the ‘North Beach’. Connor and Rhian braved the water; we played with ball and ate a picnic, Connor gave his brother instruction in the art of Frizbee throwing, what a great day! We are hoping for continuing good weather in the hope of doing it all again on Connor’s birthday next week.

Jack’s sense of humour outwitted his father’s dull Monday morning’s shower enforcement - see photograph and quote from Mst Jack below:

Me, “ Are you sure you washed properly?”
Jack, “ I washed my hair too!”
........lots of laughter......

1st May 2008

Two weeks have gone by already since our last update. The days certainly haven't dragged, and we've encompassed almost every emotion one possibly could. Connor and Rhian had school vacation from 19th April, the weather was beautiful, bright blue skies, sunny and hot!, Jack had begun feeling better although he remained neutropenic [completely flat immune system] which impinged slightly on what he could or couldn't do – we were loathe to risk an infection by allowing him to swim, and his hands are dry and chapped with the amount of sanitizer he has used. But huge, huge thanks must go to Maryellen and Rick for the use of a car for the week, for taking our family skiing with them (no Jack didn't...), but finally this weekend we relented, and allowed him into the outside pool at Sugar Bush Mountain Resort. It was a wonderful week, one that will remain in our memories for a long time to come.

Along with the happiness came immense sadness with the news of Austin Melgar's passing. [Austin and Jack were friends, peers known to each other as a consequence of their press-ganged existence aboard this vessel called cancer. The Peers, these children, are like no other; peers that are forced to adapt to the shaping born of their desperate voyage. Peers both helped and hindered by their own lack of articulation by which they might probe their plight.

Shaped like trees, trees that stand in the face of perilous winds and suffer the sculpture of that wind. And despite every frosting, each withering gust, all of these children propagates the most wonderful of flower. A flower, that pollinates without compare.

Make no mistake at the symbiosis that exists between a child and a parent – we toil at the base of our child's growth and lend our stake of support but we cannot remove the tempest nor significantly improve the soil in which their seed took root. Sometimes we glance sideways at our child's companions. A glance designed to detect whether those nearest have found a new way to resist the cancer's invasion and erosion. A glance designed to scour out hope but all too frequently destined to discover prophetic damage.

I wish I could remember, at every moment, the truth of the children. The truth is not in the avoidance of the wind but in their ability to produce and spread great beauty in spite of such.

We do not wait for an answer – the answer is already present in each moment.

Sometimes something completely unexpected happens too. Another bill arrived, one that appeared comically large, - it was so colossal surely it must have been intended as a joke. Our efforts to determine the irony of the figure were progressing slowly, but an unexpected yet consistently wonderful source stole the jester's punch-line in any event. For a few more weeks, we are again 'safe'.


This week www.j-a-c-k.org finally went live. Today almost 50 UK police officers flew into New York to give their utmost over the coming weekend, to run against this cancer, to raise essential funds to pay for promising new therapies, to raise awareness, to try and save some of the children. They care. They have paid their own air fares, raised money from their own family and friends, they have trained, they're not marathon runners, they're ordinary men and women trying to do something to help. This weekend they will each run 36 miles. Please give them your support. No donation is too small. If you care, but are unable to make a donation, please send them a message of support. By showing your support you are also showing, the families, the peers - how much you care. There are few of these children who do not know of the efforts being made to try and raise the funds that will save their lives. Please Show these children you care!

You can donate online, UK residents at www.j-a-c-k.org or US residents seeking 501c receipts can donate at www.loneliestroad.org

15th April 2008

Friday saw the end of a week of chemotherapy. Jack tolerated it less easily than he has in the past, more sensitive to the nausea, the tummy cramps, the heaches. The toxicity. I too felt more sensitive than usual…. To the vile, noxious chemicals, that once again are being infused into his small body, causing an only too visible sickness. But without these chemicals the unseen sickness inside continues to grow rapidly.

Richard's last update mentioned the spread of the disease which is now in both of Jack's legs. His bone marrow results this week showed it had leapt also in the marrow. His bone marrow which three weeks ago was clear, now has 10% disease, he has lost a kilo in weight. But there is so much reason to hope.

Jack's little friend Dustin Cobb has been here for the week from Atlanta, for treatment. Dustin has been coming to Vermont for quite some time and recently had tumour removed from his skull. A sample of the tumour was sent off to Texas in a new trial which will test the sample against an array of cancer fighting substances. Dustin's results came back this week, and surprisingly showed that one of the chemotherapy drugs Dustin was taking, would have no benefit to his particular Neuroblastoma and should be stopped, but in fact two completely natural substances will help fight it.

When Dustin was last in Vermont, he introduced Jack to a business opportunity…. Since then Jack has been engaged in making cards and selling them for a dollar each to the nurses. We have had to re-assess his lack of income out of sympathy for our nurses, and have negotiated a small supplemental income - pocket money so long as he stops trying to sell his wares. It has worked to some extent, but no matter how poorly he is, he still insists on carrying a bag of his cards with him to hospital 'just in case'!

We've all had our 'down' time over the past two weeks. Mine came with the bad news about the spread of disease on the same day as we were called by Sloan Kettering enquiring about our outstanding bill there, and on the same day, a call from Vermont enquiring as to when we intend to begin paying here. We have been concentrating very much on the Police Run in New York in May and trying to raise funds for research, but the need to keep trying to raise funds for Jack's treatment is once again compelling. There has been news of an imminent new trial which we dearly need to be able to afford for Jack to participate in. However God knows our needs and will provide. He has provided for us so far, and knows what we need long before we do ourselves.

The 'down' time for the children has been the departure of the Melgar family, who we first met during 3F8 antibodies 2 years ago. Tom and Fran brought Austin and his siblings to Vermont five weeks ago, Austin's disease had reached the most aggressive stage, spreading rapidly and seemingly responding to nothing. Once under treatment here, his VMA and cancer markers fell rapidly and his bone marrow has gone from 100% packed with disease, to being clear…. Tom, a doctor, believes Austin very probably has been cured of Neuroblastoma, but in a sad and very ironic twist, Austin fell into a coma. It is unclear exactly why, but in order to pursue the cause and treatment, they have now moved to Detroit . Connor, Rhian and Jack miss Brianna, Danielle, Sarah and Ryan very, very much.

We want to say a huge thank you to Post Pals, Jack has begun receiving cards again… thank you to everyone who has sent him one, and to Marcene who regularly sends him postcards and pictures, and to the fantastic ladies in Florida who sent him activity books. These are little things but it takes time to get to the post office – believe me I know, thank you for caring, you make a huge difference!

Thank you also to Nina and Paul, to Barbara and to Belinda for helping us out immensely with medicines. You have helped allay some of our financial worries for the next few weeks.

AND, thank you to Becki and Bailey for a huge box of Cadbury's which arrived this week containing all our favourites… flake, twirls, and the cadbury's you can't get for love or money in the US!!!!!

it's friends like you who really do make this journey bearable!

For Jack, last week's chemo has hit his blood counts hard. A blood test today showed his Platelets had dropped again, to 18, he would need a transfusion. His blood has also dropped and in addition he is now neutropenic (meaning he has no immune system again and is open to infections).

Please take the time to visit Sam, (www.samanthahughes.co.uk), a beautiful little girl back home in the UK who relapsed in January. Sam's disease has taken off like wildfire. Neil explained they have no option but to stop fighting now, she is in a lot of pain and can no longer have blood transfusions. Neil has been a huge supporter and fundraiser for research back home. Please pray for Sam and her family.

Update 4th April 2008

'Chicken Licken' tried to resurrect his refrain yesterday afternoon.

Just as Teggs the fearless 'Astrosaur', was battling a star consuming worm, ( page 24 of The sun snatcher), and the count-down on the MIBG scan's clock predicted we would discover the outcome of the first encounter between the DSS Sauropod and their latest galactic adversary – the chicken's clucking started.

We had considered three possibilities arising from Jack's scan. One - the disease would have regressed and we continue unchanged with Jack's consumption of the Nifurtinox. Two - the disease remains stable and we ditto the last comment. Three -the disease shows progression and we bring forward Jack's chemotherapy.

I had not seen the last MIBG scan but Aiobhean had described its content and Dr Scholler had similarly talked of the areas where the Neuroblastoma cells were prevalent. So I had a chart in my head, a map of probable malignancy. To be honest I had two maps: one map showing the known past the second a blank of the body's terrain. This second map contained the legend of the cancer but awaited today's satellite image to demonstrate the glow of the cancer's population centres.

The scan went head to toe and between the turn of the pages I felt comfortable with the picture of head, then chest and abdomen. I was even tolerant of the flare from the top of Jack's right femur and considered of the remaining options 2 was still a reasonable prospect. But as the plates continued their journey down the run of Jack's legs there was evidence of the cancer's spread.

Jack's right knee seemed as vivid as the top of the femur. The brightness of the knee could have been solely distracting but I also noticed one if not, two bright pin-pricks from the left femur. Both were slight spots but their contrast to the surrounding dullness was obvious.

We continued with a CT scan but the litany of the 'Licken' had begun to repeat in the back of my head.

The meeting with Dr Scholler confirmed Jack's path lay with option 3. Bone marrows were suggested for today but the promise of a swim, once Connor and Rhian finish school for the day, was too important to be broken. Jack, in turn, promised not to smile all weekend; promised to wear a frown until the bone marrow procedure was completed on Monday.

Jack's got no staying power and broke his promise almost immediately. This morning's project has been the assembly of a wooden tank. To be fair the quality control is not the most rigorous and the model has a somewhat uneven finish.

However, the aim of the operation – code named, "Falling Up" – has silenced the chicken.

22nd March 2008

Back together: Measured steps.

Jack, Connor and Rhian are back together. Back together in a strange house, in a strange town but never-the-less, in a place full of people, who are familiar? It’s the déjà vu of their smiles.

Even the tired tarnish, which we had picked up during our engagement with Newark’s Border and Imigration staff, disappeared as the three musketeers found each other.

Yvonne has already described the house; our room.

However, its 6:30am and I’m in the kitchen – alone – but the stove is on and something is already cooking? The only sound is of a clock ticking – slowly. There is an atmosphere, quite contradictory to that of the house in NY. This place is not feted with the lightening crack of 73rd Street’s energy but blessed with a draft of warmth becoming a draught of comfort. It seems there is a phantom here. A benign version of an ominous title floats through this house: “Something marvellous, this way comes”.

Back to the medical stuff. We all trooped up to the Fletcher Allen on Thursday afternoon. General chit-chat re Jack’s tolerance of the Nifurtimox – good. Slight weight loss – hmmm. No disorientation; as demonstrated by an array of ‘step out of the car, Sir. Have you been drinking?’ tests. Jack shows no sign of impairment – good. Platelets back up; HB fine, Neutrophils fine.

Ear infection seems resolved.

Then the questions of Dr Scholler regarding any potential change in diagnosis/ prognosis following a revision of the last MIBG scan. No, the bottom-line being the only uptake due to the cancer is in the femur. This does beg questions about the previous scan and the change in the cancer’s status. Perhaps the one round of chemotherapy did cause the cancer’s retreat from the areas of Jack’s legs and shoulder?

Bone marrow, submitted to Michigan for testing. Left side remains clear – Right side is residual trace of disease. In numbers terms it seems that the right side is still showing 0.001% neuroblastoma cells, (forgive me if the decimal point is not in quite the right place). The residual trace we interpret as good news for two reasons: firstly it is only a residual trace of disease and secondly because there is still some disease present in the bone marrow it should enable Jack’s NB cells to be ‘grown’. If the cells can be grown then it may aid in assisting techniques for the early detection of such cells.

Swimming with two otters and one vigorous jellyfish in the YMCA in Burlington. Connor and Rhian provided the manic; the splashes and the bombs. Jack screamed with an intensity not heard since his encounter with a ‘Yeti’. The screams at odds with the slowly drifting boy, serene through the affray; picking a route amongst the debris of inflatable brick-a-brac. For thirty five minutes the carnage lasted. Thirty five minutes before I convinced Jack he ought not to get cold, meaning dad’s had enough.

Update 11th March

Great Ormond Street did agree to provide the next cycle of chemotherapy, but on the day it was due to commence a blood test showed a sudden and dramatic fall in Jack's Platelets.  There had been a two week break following the first cycle of chemotherapy, and during that two week break the blood counts had steadily improved.  Our consultant at GOSH could only assume that the cancer was taking hold of Jack's bone marrow.  The chemotherapy could not be proceeded with.

We emailed Sloan Kettering three times before we received a response, which when it finally came was very brief and to the point – the High Dose Antibody protocol we had been waiting for had now closed.  If we stayed in London, there could be no further treatment unless the blood counts improved.  Days later Jack's blood counts saw another huge drop.  We could not afford to sit around waiting any longer. 

Jack, unable to have the chemotherapy in hospital was back at school and loving it.  Outwardly he showed no signs of disease, with the exception of the pallor of his skin.  After 3 years of treatment he is the same happy and loving child, as full of life as he was all those long years ago when life was once "normal".  Jack has not tired of the fight.  The problem is our doctors appear to have tired of the fight.  And that is the conclusion I have reached with Sloan Kettering.  With more and more children being diagnosed, and more and more children going to Sloan Kettering,  there is less time to spend on the children who have the most aggressive disease, and less time to spend on research when there are so many more patients to see......

In the children who relapse time and again, the current therapies are only killing off the weaker cancer cells, the ones  that have spread.... but a different combination of drugs is needed to then kill the stronger 'root' cells from which the weaker ones grow, spread and multiply.  With the root cells left alive in the body, they re-form and begin to grow again and again

There is more research going on now, than when Jack's journey began, and that gives us reason to hope.  But as always, funding is a huge problem. In Vermont something has become available which could prove invaluable for many of these children.  A resource whereby diseased areas can be biopsied and the sample grown in the laboratory, then tested against numerous agents to establish which is the most effective against the particular strain of disease that child carries. 

As time passes the disease changes, it evolves into a more aggressive, more resistant fiend, and in each child it is different.  Until now, only certain standard chemotherapies have been used to treat the disease.  The ability to test and recognise what may prove more effective for one child than another opens the door to personalised treatment... . and speeds the journey to finding the cure.

We arrived in Vermont yesterday, Sunday.  And today we met Dr. Sholler.  A week of tests will follow, with CT scan on Wednesday and Mibg injection... then MIBG scan on Thursday morning and Bone Marrow biopsies on Thursday afternoon.  On Friday Jack will begin Nifurtimox, a radiosensitiser which should have the ability to make the cancer cells more sensitive to the chemotherapy.  Thursday's scan will tell us what the position now is with the cancer, whether it has spread quickly, or whether the one cycle of chemotherapy has killed it off.  The bone marrow biopsies will be tested to establish what agents may work best at clearing the marrow.  By Friday we will have a better idea exactly where we stand.  For now it is just nice to have a new doctor, one who has as much fight as Jack has left, and a seemingly as strong a will for Jack to live as Jack has....

Many of you who follow Jack's story could help us now.  On 2nd May 2008, approximately 50 Police officers from London will fly to New York and will run over a two day period to try and help us raise funds for research at Vermont.  We are still working on the www.j-a-c-k.org website, but hope by next week it will be effective with an online donation system.  We need your help to help us publicise the event and help us raise funds for this vital research.  Help us put up flyers, send out press releases, send emails to your contact lists at work and at home, just help us spread the news...  You could help us save the lives of hundreds of children.   A cure is within reach, but lack of money bars the way...  

"I finish the day before the sea, sumptuous this evening beneath the moon, There is no end to the sky and the waters. How well they accompany sadness!"  Albert Camus

The scrum-downs of the past week once again seem to have paled to insignificance with the immense sadness we feel right now. 

On Sunday morning at 3am Richard's father was taken from us very suddenly and unexpectedly.  He has been the very cement which has held us together throughout our journey.  Both Richard's parents, Gerry and Anne have been a huge tower of strength, despite living in Devon, a good 4 or 5 hour journey from our home in London.  His loss has been immense to all of us.

Despite living so far from our home, Gerry impacted on so many of our friends, the mothers in the Playground, when he collected the children, our colleagues who would call, our neighbours, our friends, they all feel his loss.  He was very special.  One line in an obituary written by Richard describes the scene in the ambulance:  I can hear him whispering 'sorry'. Sorry in the same way he spoke to the paramedics on Saturday night for the inconvenience he was causing.

He was intelligent, caring and humble, a gentleman.  More than anything he was loved by many.

'If you can dream, and not make dreams your master,

If you can think and not make thoughts your aim;

If you can meet with Triumph and Disaster and treat those two imposters just the same,

…………………..You,  my son, are a man'.

Jack and I flew back from New York on Sunday night arriving in Heathrow the following morning, we drove straight to Devon.  Richard grew up by the sea in the beautiful surroundings of the South West Hams, and for the past few days that is where we have found some peace, by the sea, on the almost deserted beach, listening to the waves rolling peacefully in. 

We have been immeasurably saddened further by the news of two beautiful children being taken last Monday.   Eden and Harrison, their websites are shown in our last update.  Their struggle has ended, they are at peace, it is those that are left behind that must somehow get through the storm.  Both Eden and Harrison were only children, beautiful, unspoiled, intelligent and happy children.

We haven't told Jack about either Harrison or Eden, he knew them both well.  He learned very recently about George and cried long into the night.  We have only just told him that Grandad too, has 'gone to live with God.'

As far as Jack's treatment is concerned, 3F8 remains in short supply, the option given, Beta Glucan with low dose antibodies proved problematic for Sloan too, in this instance the supply problems with the Beta Glucan proved insurmountable.  Apprehensive that Jack might be left for another week without treatment, I spoke to another Dad at the Ronald McDonald House.  He had Beta Glucan which his son could not use, and had it shipped up to New York the very next day (many thanks Mitchell).  However the pharmacy at Sloan decided this wasn't ethical, despite the boys being similar weight , - we would have to wait another week for a shipment to arrive…  I tried reasoning, who cares about ethics, this disease is back, and it's back aggressively, and this, is where it all fell apart…..

Our doctors at Sloan, don't believe this disease has returned aggressively.  Jack's scans were completely clear in December, I argued,  it's only a matter of 3 weeks and already he has a large tumour in his femur and possibly in his shoulder.  They told me the scans in the UK could not be of the same quality as those in New York, they could only have been obtained under the old "131" regime.  So confident were they that they did not consider bothering our UK consultant…   So confident was I that those scans in December were completely clear that I did bother our UK consultant and her response was very precise.  In fact if humour were at all appropriate in the circumstances, one could only smile at her response… 'I'm appending below the result of the MIBG scan which you will see is a high quality 123I scan, as  is standard in developed countries………………." ".. the disease has returned with an aggression…."

There was no satisfaction to be gained….  I do not want Jack's disease to have returned aggressively but each time the disease returns, it does so with a stronger resistance to the drugs it has already been treated with.  Neuroblastoma is unique, it has an ability to recognize and build a resistance to the agents that are capable of initially attacking it…it is an alien to the majority of the diseases we know and can contend with…

And so with no hope of receiving the antibodies for yet another week, we commenced chemotherapy on Wednesday… Irinotecan and Temozolomide… 5 days on and two weeks off.  Not of our choosing in any way, but merely what was left on the plate after fruitless argument.  One week of chemo was squeezed into the remaining few days, with oral drugs to be taken Saturday and Sunday.  And Jack?  He remained at school with the exception of Valentines Day when he made two cards in the Playroom, one for Cara and one for Katie, school friends back home.  I didn't have the courage to tell him they would never reach home in time, but Cara and Katie, if you read this…. He was thinking of you!

Now, we are at home monitoring blood counts, having the transfusions, laying Grandad to rest and hoping Great Ormond Street Hospital will provide the next cycle of chemotherapy.  If they do, then we will not have to return to New York for another five weeks.  If they refuse, then we will return in less than two weeks.

Update February 6th, 2008

When I was little, and afraid in the dark, my mother would tell me on the darkest nights the stars shine their brightest... .. and I would look at the sky, and the stars would look like the street lights to heaven. And I would no longer be afraid.

I am that child again. I am afraid of the dark. Jack’s scans show the disease is back in his femur as well as his bone marrow, and possibly in his shoulder too. It has returned with a rage as the last battle ended, it has allowed no time for recovery, this beast has no honour, there can be no honour amongst thieves. This week the gentle and beautiful George Yeomans was laid to rest, www.georgeyeomansappeal.org, little Carter Moore, diagnosed only 7 months ago, was taken. www.caringbridge.org/visit/CarterMoore

And still the dark clouds continue to gather.
Little Courtney Saunders www.caringbridge.org/visit/courtneysaunders who returned for routine scans, was found to have relapsed in the site of the original tumour. Surgery is no longer an option, she returned home with her parents Sherry and Paul, on palliative care with no options left.

We have nothing to offer but prayers. Jack too needs prayers of healing. The families of George and Carter need your prayers just as badly, to help them through the desperate emptiness of their loss which will last a lifetime. So too do our wonderful friends who have time and again offered us support through our darkest days; Austin Melgar www.caringbridge.org/visit/austinmelgar and Eden Brunskow www.caringbridge.org/visit/edenbrunskow.

There has been much bad news around the House, many of our friends are now battling relapse. Although probability is never far away when diagnosed with this disease, the shock of hearing the word relapse is akin to first diagnosis, again, and again and again.
It’s always darkest before the dawn.

Our last update referred to a plan. There was a possibility that the plan would change following the scans, and watching the agonisingly slow scan take shape on Saturday, that fear became more real. The plan involved high dose 3F8 antibodies which has proved successful in clearing bone marrow disease in many other children. Today it was confirmed – the plan had changed – but not for the reasons I anticipated... it had changed because of GMCSF withdrawal, the hospital stocks are low... and Plan B? Beta Glucan with 3F8 (normal dose). I don’t feel comfortable with this... this disease is back with an aggression and I don’t for one minute believe this will hold it... but we are short on options, we have no stem cells left, and Jack’s blood counts, although improving, remain too low to be eligible for many trials. The Beta Glucan has to be ordered... the protocol runs Wednesday to Wednesday, so another week without treatment lies ahead.....

Yet I find myself sitting here calmly writing, because I know that it is only through Gods work that Jack is still here, still laughing, and that we still have hope. One mother in particular keeps me strong, her child epitomises hope. Harrison Nichols, www.caringbridge.org/nc/harrison, was admitted during January, the disease had spread to his liver. The doctors said their goodbyes on the Friday, not expecting to see Harrison alive again. This week, Harrison has been walking around in the Playroom, and playing Uno very much alive. Miracles do happen. Harrison has been fighting for 5 long years, he is an only child. Gina, his mother has been blessed with the calm composure of patience.

When we started out on this journey, did I believe in God? – maybe, maybe not. I’d been brought up to believe, but along the way there proved too many distractions. My faith was non-existent when Jack was diagnosed, yet it has returned and grows stronger with each set-back. It is only through God’s grace that Jack is still with us. I sat for 5 hours in the waiting area at hospital today, as the afternoon began to pass, I was very aware that those who are kept to last, are kept as ‘more time’ can be offered.... but for the first time ever I felt they could hit us with whatever ‘bad news’ they wished... it would be irrelevant, God has heard our prayers, we are being given direction. A phone call this evening, a series of unexpected co-incidences in the last week, and suddenly hope returns as a beacon through the darkness.

Everything is possible for he who believes Mark 9:23

Our routine will continue over the coming week, Jack will go to school on the 9th floor at Sloan every morning, we will take each day, one by one., we will continue to pray that the road is long.

Ithaca
When you set out on your journey to Ithaca,
pray that the road is long,
full of adventure, full of knowledge.
The Lestrygonians and the Cyclops,
the angry Poseidon -- do not fear them:
You will never find such as these on your path,
if your thoughts remain lofty, if a fine
emotion touches your spirit and your body.
The Lestrygonians and the Cyclops,
the fierce Poseidon you will never encounter,
if you do not carry them within your soul,
if your soul does not set them up before you.

Pray that the road is long.
That the summer mornings are many, when,
with such pleasure, with such joy
you will enter ports seen for the first time;
stop at Phoenician markets,
and purchase fine merchandise,
mother-of-pearl and coral, amber and ebony,
and sensual perfumes of all kinds,
as many sensual perfumes as you can;
visit many Egyptian cities,
to learn and learn from scholars.

Always keep Ithaca in your mind.
To arrive there is your ultimate goal.
But do not hurry the voyage at all.
It is better to let it last for many years;
and to anchor at the island when you are old,
rich with all you have gained on the way,
not expecting that Ithaca will offer you riches.
Ithaca has given you the beautiful voyage.
Without her you would have never set out on the road.
She has nothing more to give you.

And if you find her poor, Ithaca has not deceived you.
Wise as you have become, with so much experience,
you must already have understood what Ithaca means.

Update 1st February 2008.

 Jack has had one of the most fun weeks of his life. Surrounded by friends; friends in treatment, siblings of friends in treatment and not so boring grown-ups.

For a week we lived in an almost indestructible atmosphere. An atmosphere whose gentle pressure proved a barrier impervious to penetration by the potential blight beyond the bubble of now. The future became as irrelevant as any others'. The future could be as certain as any others'.

It's hard to explain why but it's because we live in the future.  I wish I could ignore the future other than to plan for the exceptional, the holiday, the birthday, the random, the exceptional unexpected. I wish Jack lived in a world where it was right to presume in continuity.

We live in the future because of an obdurate question mark. A question, which never ceases to begin, to usurp and to end every thought.

How Long?

3 years ago the character of the question was how long will Jack's treatment take. How long until Jack's safe?  How long until he and we can rejoin the migration, the journey that was our natural course?  Statistics and warnings abounded but our faith in Jack rebutted such comments with little damage.

 But during the 3 years the weathering effects of Jack's treatment have eroded the sense of the question's original premise. 'How long' is worn and lacking the bold symmetry of its formative weeks and months. Turn from the leeward side of 'how long' to that side, which faces the storms of the diseases and the destruction of the therapies. Face that side, which absorbs the negative energy of the cancer's climactic ebb and flow. On the weathered side 'how long' is stunted, bowed and stark – simply how long?

For some reason I can't see both sides of the shape at the same time but the sense of wear and reduction in the gap between the two connotations of 'how long' is palpable.

How long until it's over. Over.                    Over

Two days ago:

 This morning I was sure that by now, we would be in the departure lounge of JFK.

I was sure I'd be at work tomorrow. I was sure Jack and the kids would be back in school on Friday. I was sure that Connor would be happy at the surprise of transformation of his room, being decorated in our absence. We were even looking forward to the return of 'stinky dog'.

I was sure Jack was fine and we'd be home with a bag of drugs. I was sure that the need to look over Jack's shoulder, into the shadows for now, was redundant.

I wasn't sure beyond Easter but I had allowed the optimism, engendered by Jack's physical health, to shine ahead and believed it illuminated a future. I believed that we were on the sheltered side of 'how long'. I allowed a forecast of spring when winter had only relaxed, not ceased its blast on the starker, 'how long'.

Three hours ago the certainty, which we had permitted to cement, crumbled - the cancer is already manifest in Jack's bone marrow.

There is a plan and we must believe in its providence. The mechanics of the plan are sinking in. The words are familiar like a litany from childhood but it will take a couple of days for the realism of the ordeal to imprint.

Jack is due to have two more tests in the next three days. Their outcome will not necessarily change the plan; merely indicate the depth of the shadow and its potential speed.

As I write I believe that I am coming back on a flight during the weekend. Connor and Rhian will be accompanying me. I honestly believe what I write but there is a hollow mocking, not of my making, to the promise.

 This is what we hate that the most. We can't keep our promises; not even the one that is earnest above all others.

Today.

Got to smile about something so.......................

Having had CT and MIBG injection today, Jack and I began the trudge from MSKCC to a toy shop on Lexington. Trudge because, it's a crap day. Crap day, crap weather and I don't want to leave. Connor and Rhian don't want to leave yet we have to – for lots of good logical reasons.

Jack doesn't want to walk. I want him to and one of those hateful conversations is beginning to simmer.

"I-spy" can divert but Jack decides he doesn't want to play because it's boring. And to some extent he's right – grey, wet Manhattan doesn't inspire the I-spy poet in me or Jack.

So I persuade Jack that I have an ability to divide my brain in two and play eye-spy on my own. Left half prompting the question. Right half attempting to solve the riddle. Jack is perplexed but decides he needs to assist my right side by asking for clues. If Jack had been a girl my ruse of being able to divide my brain into different tasks would never have worked. Anyway on each and every occasion Jack out performs my right brain and guesses the correct object.

15 minutes later Toy shop arrives just as both halves of my brain give up.

Christmas 2007.
It wasn't quite how I imagined it. It could have been a fairytale, a moment of delight as the story ends, the beginning of a happy ever after. It wasn't - it was more real than that. Christmas was a joyous part of this journey, a place on the road not affected by revelation but altered by gentle arrival. A port in which to replenish, not quite a destination.

Children made common by expectation. Connor, quiet and aglow in the bask of his brother's presence. Rhian expectant and radiant at Christmas' promise. Jack unbound, unfettered by the imposition of his cancer's alter ego.

Grandparents and Uncle slightly transfixed as if at the bedside of their first grandchild, helpful, diligent and imposing only goodwill. Grandfather and Uncle with dedication, and eyesight, not witnessed since the forger in 'The Great Escape', combined their forces to conquer the fiendish intricacies of Lego.

Us, well, confused. I've never white water rafted but it seemed like a sudden pool in the torrent – a placid place. A place where the frenetic activity of previous weeks ebbed of its own accord. Purpose is a strange beast for regardless of its burden there exists energy. Christmas was almost like emerging from the running with the bulls into a queue of unknown turpitude. Commands, co-ordination, discipline were, well, inappropriate. Nervous, ordinary, stuttering conversations about, stuff, politics, weather, just..... things, they started spontaneously spilling out of mouths. I suppose it was a huge dollop of that languish that descends precisely 15 minutes after the pudding is ended and a pile of dishes becomes a siren to the sink. Quiet. Sure there was lots of laughter, cooking, washing, cleaning and wine but the narrow channel of singular focus just disappeared. And that made Christmas true. For forgotten amongst the discarded wrapping paper lay an impotent, ignored, cancer.

Christmas was great!

Presents – there are people in this world that make magic happen. Some of you sent things and wrote messages that kept the spell intact for us all, all Christmas. Please know; please know that what you do is a gift and a remarkable thing.

Talking of remarkable things, Oddie, or DOG, depending on exactly how much destruction has been caused is a constant beacon. Springers are just like Tiggers; no matter how much they bounce you can't help loving them. Jack has this way of saying his name, a calling that resonates of an episode of 'Backyardigans'...."Yeddeee, Yeddeee, Yeddeeee".

Now Jack. The evening of the 27th came a call, which confirmed our belief in the prophesy of the scan of the 20 th. NED. But it's a bit like getting a letter from Reader's Digest saying you're a guaranteed winner in the grand prize drawer; in that you're through to the next round.

But what next round?

Firstly, the MIBG did work again – temporarily, whatever that means. We like to think it means months, lots of months. But you know those fantasies, where you wish the hobbit would stop messing and would just throw the damn ring in the volcano 'from whence it came', (and that really bad guy looses all his power stuff), this is not quite the same other than the army of those quirky little cells has been vanquished –AND- so have Jack's cells. Last stem cells gone. No more D-Day just rear-guard action when the horde arises. Come on some Dr write a different ending.

Stop with the army analogies...!!!!!

School. Jack and Rhian returning to Christchurch. Why does it seem so important? Perhaps because of selfish reasons; a manifest display of resilience. I can write of Jack's progress but it is nothing but ornamentation. An ornamentation of that, which occurs in a playground, surrounded by his peers, uniformed and shivering in the damp and cold Jack manifests his achievement. Two days in a row – today corrupted by a blood test before class – but as he walked in he looked over his shoulder, like 6 year old children do, and there was apprehension but no quibble with his lot.

Jack and his ilk keep on going despite the sufferance of adult sensitivities.

We remain in financial debt to Sloan Kettering, but the life of this small soldier, now aged 6, heavily outweighs the ever constant bills and the enduring debt. Jack, like the many other children fighting this battle, has never ceased to amaze us, the pain they tolerate, the never-ending needles and infusions, the tiredness, the ansathetic, time after time, after time, biopsies, surgery, line renewals, chemo, radiation. The scans that require them to lie for 2-3 hours motionless while awake, infection after infection... but the love that shines through is like none that I've ever experienced. The gift of cancer is one that few can ever know....to spend so much time with one child, to know that child like no other, is a luxury that few parents will ever experience. To lose that child is a pain that few parents will ever have to endure.
That is why we have to return to New York, that is why we owe him the chance to live the life he so desperately fights for

Update 20th December 2007

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and, who can tolerate not knowing... not healing , not curing... that is a friend who cares."

The past few weeks have been difficult ones, uncompromising in a way I could never have imagined.   We are both very thankful for the patience of all who have waited for an update.  The email inbox contains over 700 unread emails, and I will, slowly, over Christmas, try to answer each one as best I can.   I have wallowed in something I loathe, despair, overcome, consumed by wretchedness, a sense of hopelessness and doubt for the decision I made, the decision we made, to put Jack through the Mibg treatment again.  And initially things did seem to go according to plan, but which afterward took a turn for the worse, commencing with the onset of Pneumonia.

Jack recovered quickly in 'medical' terms from the pneumonia, but the high fevers continued, he communicated his feelings in his new found word "rotten," but suffice to say he felt unbelievably poorly, listless, and with no appetite his weight plummeted from 17.9kg to 13kg.  A nose tube was inserted which Richard described in the previous update, a nose tube that Jack hated so much he pulled it out inch by inch by himself one evening. His sickness was compounded by the racking cough, although our doctors on a daily basis would listen to his chest and tell us it was 'clear', but added they had "no idea what we're treating".   And so returned our fear of the advancement of this abhorrent disease into Jack's lungs. 

Was it my lack of faith that caused the hopelessness, or was it lack of hope that caused faithlessness?  Jack had walked into University College Hospital London, a happy and outwardly healthy, happy little boy despite the thing growing inside him.  He had tolerated the isolation well (helped along by the many, many cards and messages he received), but at the conclusion of treatment, he was more skeletal than we'd ever seen him, his smile had disappeared, he complained daily about the pains in his head, chest, back and his tummy, despite being on numerous antibiotics and high dose pain relief.   Our memories of the first mibg therapy were nothing like this, Jack had sailed through it all, and in hindsight, despite the intense treatments his body had undergone since then, we hoped the same would recur.   We had been well warned that this might not be the case… there was a risk,- he might be so poorly he would be hospitalized over Christmas… but that same scenario also applied to the alternative.

Last weekend finally saw a dramatic improvement.   Jack started requesting 'pepperami' stick's, something his parents aren't keen on, and have no idea where the craving came from, but if it meant he only had a bite, if there was the slightest possibility of his putting some weight on, he got it.   He ate them morning and evening, then developed an additional craving for 'fries'.  At 4pm every day (when the restaurant had just closed in preparation for the dinner rush), he would demand 'fries'!   And from there, a dramatic improvement evolved… the pain stopped and Jack started walking to the toilet with the help of an arm, then later, unaided.   Suddenly he wanted to play games again, to colour and draw, and began asking about his new dog, whom he'd seen for only a matter of hours.  Later in the week we came home.   The feeling was one I would associate with being released from prison.  I'm not sure Jack would share my sentiments, he is simply so used to being in hospital, it's like a second home to him… but for Richard and I, much of the stress seemed to ebb away.   Richard had been working and spending the nights at hospital, getting little sleep, waking up and going straight to work again.  I would leave the hospital with Rhian and Connor at 9pm every night, try and spend a little time with them while getting them ready for bed, then I'd fall asleep exhausted;   why?  I could say I have no idea, or I could guess the reason may be the constant worry, but deep down I have to concede the reason has more to do with having to watch Jack fall into a state of indifference, uncaring whether he lived or died, knowing it was I who had made the decision that had brought him to this point..   Trying to coax him out of it, show him every reason why he should continue to fight the good fight, when I wasn't convinced .  This was, after all, his fourth relapse.   In the UK, it is generally believed that after each relapse, the disease returns in a more aggressive state than before.  For the first time ever he had tried to talk to me about the one thing I wasn't yet prepared to talk to him about.   We had listened to R. Kelly "The storm is over now" a favourite song of his, but followed on the CD by a particularly sad song {"I wish"} with very poignant lyrics which he also insisted on listening to…..   Jack wanted to know if this was a song for 'little children who went to heaven".  The weeks were more physically and mentally exhausting than I could ever have imagined..

Our scan was scheduled for Thursday 20th December, at Gt. Ormond St. hospital.   This would tell us whether or not the Mibg treatment had had any effect on the cancer inside Jack's body. On Tuesday Jack asked if he could go to school.   He went, but at lunchtime I received the call, could I come and collect him, he was feeling tired.  He seemed more excited than tired to me as I drove back home, but he'd become very cold from being outside through lunch-time.   I wrapped him up in a blanket in front of the TV and within seconds he was fast asleep. He slept for three hours.

On Wednesday Jack and I took the underground into Gt. Ormond St hospital, Jack needed to have an iodine injection which would attach to the remaining cancer cells in his body, prior to the scan the next morning.   He also needed Pentamadine and his port would have to be accessed. We went to Pizza Hut for lunch but for me, the butterfly tummy had executed any appetite, butterflies I knew that would remain for the next 24 hours.   Jack however had re-discovered his appetite, he ate enough pizza for both of us, followed by ice-cream, a sign that gave me some hope.

Wednesday night  was difficult to say the least.   Did I really get up and have a shower at 1am?  Did I really pull out the bible I had many months ago discarded?   What opened the book at Hebrews 4:16? 'Let us therefore come boldly unto the throne of grace, that we may obtain mercy and find grace to help in time of need" deciphered underneath as 'come with reverence for he is your King, but come with bold assurance, for he is your Friend and Counselor'.   I read, and I think for the first time in many, many years, I understood.

The words I read stayed with me the next day, and when we had entered the dark scanning room, and Jack had nervously taken up his position on the bed, I remembered.

Frustrated by the lack of internet access while I'd been with Jack during his incarceration in hospital, I had acquired internet access via the cell phone.   However our room in hospital was in such a position that the reception was so poor one was unable to access it.  However, here, deep in the dungeons of Gt. Ormond St Hospital it became a useful tool of distraction from the screens lighting up around us as the scan initiated.   I surfed the web, looking at the websites of our friends fighting the same battle in America, the 'caringbridge' websites of Eden Brunskow, Austin Melgar, Ryan Reardon and Dylan Hartung.   At one point Jack asked me to do something… while I glanced up I couldn't help notice the screen…. It had just finished scanning his abdomen and pelvis…. And the pelvis was clear… completely clear!!!   I returned to the distraction, but was less distracted now.  Next area scanned was his legs… 30 minutes later the scan completed – his legs were also clear…., I turned the phone off and watched avidly, ignoring Jack's whines of annoyance at continued imprisonment under the cameras.   Chest clear, shoulders clear, head clear.  We of course are not qualified to say what is clear and what isn't, but having seen at the very least, 15 Mibg scans in the last 2.1/2 years, we know what we're looking for (or rather what we're not looking for), and this scan was showing nothing.  This was confirmed by the radiologist, who had given us the same wonderful verdict two years ago to the day!

The official scan report will not be through until January, but that scan was the clearest I've ever seen, and for me, Christmas has come early.   There is truly nothing else I want in this whole world.  My prayer on Wednesday night was with much reverence, asking God to remove this disease, entirely, from Jack.   If it is God's will that Jack should leave us, then take him in some other way, but not through this awful disease.  Let him be free of these chains forever.

Today Jack went to school for a full day.   He came home with trousers and shoes covered in mud, complaining of being hungry, despite having eaten proper school lunch. His face is the same colour as his class mates, it has lost the awful grey pallor and has a rosy tinge on his cheek bones.   As each day passes we have more and more hope.  For me, blind faith will bring him through this… thank you all for the amazing support that hasn't just brought Jack through the uncaring phase, but has shown us indescribable love.   I think we have in the region of 500 cards from the US, the UK and some other countries, but this number continues to grow on a daily basis.  Yesterday we picked up some packages from UCH, then collected another 50 cards from our local hospital.  Each card holds a special message, many of you continue to pray for Jack.   Is it the prayer? Is it the positive thoughts? Whatever it is, please keep doing it – it's working.

Philipus Aureolus Paracel

Update 19th November 2007

When things are bad, we take comfort in the thought that they could always be worse. And when they are, we find hope in the thought that things are so bad they have to get better.”

This was one of those weeks. Jack had begun feeling better towards the end of last week, waking up early on Thursday, feeling great, asking to go to school. However the oncologist from our local hospital had arranged to see him, and we would have found it extremely difficult to cancel her at this stage. Jack cried bitterly at being told no, but the visit was important, I wasn’t quite sure why, but I felt it. Jack’s happiness is also very important right now, if he is happier going to school and being with his friends and feeling ‘normal’ once again, we would make every effort to allow him to do so.

As things turned out, unexpectedly his blood results from tests taken on Wednesday returned very low, his Platelets had dropped to 3,( they’ve never been that low) the hospital had tried to get hold of us on Wednesday evening but had been unsuccessful. It seemed to take all day for a bed to become available and finally at 5pm we went to BGH to being the transfusion. As luck would have it, Rhian came home from school feeling sick, and eventually she was – again and again throughout the night. By Friday morning she seemed a little better but still unable to go to school. Jack was now neutropenic. (Neutropenia is an abnormally low level of neutrophils (white blood cells) in the blood, the immune system is flat and the body is vulnerable to bacterial and fungal infections).

Throughout the night on Friday Jack developed a fever resulting in him being admitted to Barnet General early on Saturday morning. We hoped that it would be diagnosed as ‘viral’ as a flu bug has been sweeping through Barnet, but it was a half-hearted hope, Rhian although sick did not have a fever, and although the possibility that Jack had caught Rhians sickness was strong, the symptoms just didn’t seem to match. However the wheel was set in motion on our arrival in Treasure Island ward.

When an oncology child with Neutropenia develops a fever, they are routinely immediately placed on antibiotics and blood cultures are taken to establish whether an infection will ‘grow’ in the next 48 hours. One of the antibiotics is given intravenously and the child will be kept in-patient. Our bitter disappointment was evident as we tried to explain it was Jack’s last weekend of Freedom – once the second course of Mibg therapy hit him, his counts would worsen and it was probable he wouldn’t be out of hospital much before Christmas again. He had missed the school fireworks because he’d been in-patient at UCH and we had arranged with friends to have our own fireworks party at home that night.

The hospital staff were fantastic. They worked the antibiotics so that Jack was allowed out for a few hours that evening. Jack watched the fireworks for a while but despite being wrapped up in a jumper and coat he began to feel the cold, the anti-sickness drugs were wearing off and tiredness set in. He finally gave in and watched the fun from inside the kitchen window before falling asleep.

On Monday afternoon after blood transfusions and more platelets, we were transferred back down to UCH. An awful cough had developed, it was very persistent and reminiscent of the cough he had last December when he had pneumonia. How he managed to lie still for the 2 hr mibg scan the following morning, I have no idea. A second chest Xray was taken following the scan, this showed something going on in his chest, no one knew what it was, it could be infection or it could be further disease. I spent the day in turmoil, apprehensive and scared that this hated disease had advanced into his lungs, this is one of the worst things that could happen. The hardest areas from which to clear the disease are the lungs and liver.

By Wednesday, common sense became the basis of renewed hope, the fever had gone and the cough had developed so suddenly; this had to be an infection, but still the unease persisted. On Wednesday the decision was made to proceed with the second dose of mibg – even if this was new disease, we had nothing else, chemo wouldn’t clear the disease and our hope lay ultimately in the mibg. So at 2pm the second infusion was conducted, 24 hours later than scheduled. Jack lay throughout the day listless with no energy looking frailer than we’ve ever seen him look before. He has had no appetite for days. He is rapidly losing weight and it showed in his skeletal frame, his eyes have lost their sparkle, his skin is an awful grey colour and black circles are prominent underneath.

However, his moment of happiness has not been deprived to him….that moment being when ‘the postman’ arrives. More than ever we now appreciate the cards that are still arriving. In an effort to keep that sought after smile, we have taken to ‘drip feeding’ him the cards. A few in the morning after breakfast, a few more at lunchtime and few more in the afternoon... It is the little things in life that give the most pleasure. Those cards mean much more to us than most could realise. They keep us – his parents – alive too. This week has seen us juggling our other children among friends, while Richard works and I am at hospital – it is our friends who have collected Rhian from school, had them stay overnight, fed them, taken them to school the next morning. Without our friends we could not have coped…. The same friends have bought the children gloves with this week’s onslaught of cold weather, have filled in at school meetings which we couldn’t attend and have been there for our children when we can’t .

For Connor and Rhian , Their pain weighs heavily on our mind.

Connor has had a tearful week, although it is hardly a surprise, it is hard to work out the exact thing that bothers him the most. Taking the whole situation in general there is little doubt he is extremely scared for Jack, whether Jack will survive. We try to be honest but in the most hopeful of ways, yet Connor has once again taken to listening in on telephone conversations, looking for a ‘hidden’ answer. In addition he has been coping with large amounts of homework, and forgetting books and kit for school, simply because he’s being juggled about between our house and friends houses during the week, at weekends and very often overnight. To those friends we can only again apologise for the burden.

Topping everything this week, was Wednesday morning when the morning madness began, getting Connor up at 6am, breakfast and out to school on a frosty morning, then getting Rhian up and ready for her school. I had managed to jump on the underground on time for once, to get to hospital and allow Richard to get to work, when the call came…. Connor had fallen at school, and cut his eye, badly enough that the school advised he was taken to hospital. Connor’s new school is in St. Albans, a 20 minute drive via the motorway on a good day. It wasn’t a good day, St. Albans is a market town, and it was market day. To make things worse, the secretary at school felt it necessary to warn me that Connor was more scared of the trouble he was going to get into from his parents that anything else… but she warned he was also scared of the thought of going to hospital. That hadn’t even occurred to me – but it should have been obvious - his experience of hospital has really only been when Jack has been having surgery, or is tied up to numerous tubes providing chemotherapy, fluids, blood, etc. The hospital car park was chaotic, I searched frantically for a free spot while blood poured from the dressing on Connor’s head, over his uniform, eventually grabbing a spot on the grass just being vacated by a doctor…. His experience was less tedious that he anticipated, we eventually came away with a few stitches on his eyebrow, to find yet another yellow note on our windscreen. (For our US friends, the parking tickets in the UK are yellow).

And on Friday, after a week of debate, the official diagnosis was finally made….”we’re reasonably sure he has pneumonia”. The response I bit back was along the lines ‘’we told you that on Monday’…I didn’t, I breathed a hugh sigh of relief that for the time being, this beast had not penetrated his lungs.

It is now the weekend, and we have spent it again in hospital. Jack’s isolation has been more or less ignored by us this time around. The radioactive dose was a lot higher and the initial readings were much inflated from the last, but with the racking cough that wears him out hour after hour, and the constant diarrohea…one would find themselves in the room assisting him consistently anyway, even if we did want to keep our distance. We fight this battle together.

Finally it remains to say a huge thank you yet again, to the many who have sent cards and letters and magazines. To the many schools that have sent us bundles of pictures and books, and to the many friends – some of whom we have met for the first time - who have called in to visit. Every single card has made a huge difference – my thoughts are already diverting to how to occupy him next, thinking of the approaching incarceration at Gt. Ormond Street, where he will spend weeks after his 4th Stem Cell transplant – he has been thoroughly spoiled with the bundles of beautiful cards and packets arriving every single day he has been in UCH. It crossed my mind that I could ‘resend’ some of the cards, but the boy is too shrewd…..

Eventually there will be a cure found. I hope to be part of that."
Elena Ovaitt

Update 6th November 2007

Room with a View.

It was strange, odd on certain levels, re-entering University College Hospital. Two years ago to the very day we had placed ourselves in the same scene. Two years ago following 12 rounds of unsuccessful chemotherapy Jack surrendered to MIBG radioactive therapy. Then there was a sense of trepidation, now there is a sense of trepidation. But its cause is subtly different.

The first time our minds concentrated upon the hardware associated with the treatment. Floor 11 of the hospital. The isolation room; the double doors, which segregated Jack from the outside world; the sounds of the radiation counters as their beeps accelerated to a frantic level as we approached Jack. We had not yet launched Jack’s appeal and we were isolated too – confronting Jack’s illness as a family. Below is my account of an incident that ‘snap-shots’ the first go at this therapy:

The first time round there was no canteen at the hospital. The place was brand new, shiny but with an inevitable grinding in its gears. I asked Jack if he was ok with me popping out for 10 minutes to buy a sandwich. Jack was fine...............so I left him.

The nurses’ station outside the room, oddly, was nothing to do with Jack’s therapy. In fact it was a place of fear. Sited directly outside Jack’s room, meaning within potential reach of those radioactive tendrils, those rays emanating from the boy, sat the station. Sometimes spoken but always sensed, as the outer cell door withdrew on its hydraulics, was a line from a comedian, “Shut that door”.

“I’m just going out to get some food”......................stony silence. (Yeah well it’s your alien I’m not going in there without a NCB suit).

I think my phone rang while I was out and my 10 minutes stretched to 20. As I returned to the room and faced the outer door I saw movement thorough the window inset some 5 feet above the floor. A flag, a symbol waved within Jack’s room. I opened the outer door and crossed the no-man’s land to the inner door. All the while the flag waved. A flag devised to signal, “Small boy, and help”. The doors drew aside and there was Jack clutching the signal, “I need to go to the toilet NOW”.

A 4 year old boy, whose stature meant he couldn’t reach the door to the bathroom, had devised a strategy that brought me to tears. Not because of his plight but because of his strength and ingenuity and well everything.

Jack is now six and still can’t reach the toilet door. But OUR nurses’ station is now outside the room and there is a link between Jack’s room and the sleeping cubby between the two doors to his world. You can see Jack on a monitor, more importantly he can see you.

There is not so much fear of the radiation this time; it has its job to do. The counter’s beeping lacked a sinister tone and reminded me more of a maniacal dolphin. It wasn’t just Yvonne and I but even friends who came to visit were content to ignore the dictates of separation and to just be with Jack for a few minutes. The book in which we carefully recorded our received doses the first time is still in use. A peculiar diary, a clinical testimony to the 25 patients and their carers who have occupied the space over the intervening 24 months.

Jack coped well; he coloured and we looked at books; played Uno; watched TV and annoyed each other. The food was tolerated and Jack’s only symptom of processes within was the early onset of diarrhoea.

Jack got cards AND more cards and AND more cards - it was great fun reading out the messages and working out how best arrange their display. Thank you to everyone who sent them in – I wish there were words to describe how much they are appreciated. The broke the boredom, the monotony, and towards the end of the week when Jack became sickly and lethargic, wanting only to lie in bed, his one bright moment was the arrival of ‘the postman’. I hope it is suffice to say that each card he received will provide us with a very precious memory, we intend to keep every single one. Thank you.

Jack’s radiation count came down steadily and by Saturday afternoon he was considered to be ‘cool’ enough for contact with the outside world. Our escape was made more memorable by one of those lovely notes employees of Camden leave on the windscreen of your car.

Rhian and Connor did have to find shelter elsewhere for two nights. This tempered Jack’s buoyant mood at returning home. Sunday afternoon was bright and still the perfect opportunity for an attempt to launch a mini helicopter on Hadley Common. Grandfather, Uncle and father – boys united by 20 second bursts of flight. Jack has suffered further sickness and his appetite is negligible. We hope he will find some energy before Monday’s return to his room with a view.

UPDATE October 24th

It's been another sad week. Little Lucas Tran passed away on Tuesday morning, and beautiful Grace Oughton was taken home for palliative care also. (www.graceoughtoncancerfoundation.org) Please pray for strength for Grace and for her parents, Alec and Crystal and for Lucas' parents, Thy and Chin. Both families have been our very good friends, bonded by our hope.

When the world says, "Give up," Hope whispers, "Try it one more time."

We took Jack to Great Ormond Street Hospital on Tuesday, the only suggestion forthcoming was radiation to the sites of the new tumours and maintenance low dose chemo. Jack has never responded well to Chemotherapy, and the likelihood is that we would use his final bag of stem cells, with little response, it therefore seemed sensible to enquire about further Mibg therapy – although it's highly toxic, this worked two years ago, the back lash of the toxicity in future years was something we no longer have to think about. Our consultant agreed to fix an appointment for us to See Dr. Gaze once again at UCH-London.

Dr Gaze fitted us in the very next day. He is a very soft spoken man with the most gentle and comforting manner. Jack will be admitted on Monday 29th October. The radioactive Isotope will be injected on Tuesday 30th and he will remain in Isolation until at least Saturday. There will be a one week break before being repeated in two weeks time. Our hope is that we will be able to give Jack, Connor and Rhian one last wonderful Christmas together. We are under no illusions, every day is precious.

We are very grateful for your prayers, and would welcome any letters or cards you wish to send Jack during his weeks of isolation. They should be sent to Michael Jack Brown, University College Hospital 11th Floor Children's inpatient Unit, 235 Euston Road London NW1 2BU.

Our grateful thanks

Yvonne, Richard, Connor Rhian and Jack

UPDATE October 21st

We are still considering the way ahead for Jack. We are most likely to undertake further mibg therapy at UCH london, commencing Monday 29th October. This is something we never imagined Jack would have to undergo again, involving further radioactive infusions and two weeks of isolation as Jack will become radioactive after each infusion.

We are very grateful to our friends in the US who send us daily messages of support and remind us of the varying options available there. Right now, Jack is so happy to be home and hasn't shown much interest in returning to NY. However, after watching the guitar man in Central Park play for him on Saturday (click the link) http://media.podshow.com/media/2715/episodes/84157/iltv-84157-10-21-2007.m4v
He's now re-considering.

A week has gone by since our return, and we are beginning to feel some of Jack's fighting spirit ebb our way, although we are realistic enough to accept we are merely buying time with whatever course of action we take. Please watch the link, it reminds us of the many good times we've had.

We've been asked now and again if we regret going to the US. Absolutely Not. Our good times there far outweigh the painful, and if we were offered the chance to grab those many months back once more, we'd do it without hestitation. The Ronald McDonald House is a wonderful place and the nurses and doctors at Sloan Kettering are some of the most caring we have ever come across. Our nurses cried with us when the news of Jack's relapse was confirmed. The simple fact is this, Jack has a particularly aggressive type of disease, one that never reacted to chemotherapy in any way. There is much work being conducted in many, many institutes across America and we have no doubt a cure is within reach. Whether it will be found in time for Jack is doubtful. Either way fundraising is essential, we will continue to fundraise to speed the way to finding the cure, and bring it to the UK.

Update October 15th

We had a heavy day of scans on Friday, and have been devastated by the result of the Mibg Scans.

Jack has relapsed in multiple spots, left leg, right leg, knees, thighs, pelvis, hip and right shoulder.

Friday was terribly difficult for him, we'd had little sleep the night before, and he'd been up at 6.30am to drink contrast fluids. Scan after long scan became more and more tedious, he is still frightened of the large machines, especially the noisy ones, and finishing off the final scans and the bone marrows, having seen the screen of the Mibg monitor was utter torture. I have brought him home. For now, he is in the one place he wants to be - in his home which he hasn't seen for nearly 11 months, and with his family. The one question that arises now is what to do. His blood counts are low and will not tolerate High Dose chemotherapy, he's used up most other options. Quality of life for Jack must now take precedence over everything else. He has fought 'the good fight', but this awful disease still prevails.

We have an appointment scheduled at Great Ormond Street for tomorrow, Tuesday, although we know the only option will be pallitive only. We are aware of other trials available in the US, but Jack does not want to go back there right now. We are waiting for the NB team at Sloan to tell us what other options they have available. If we could only hold the disease stable for a few weeks, Jack will probably feel more secure about leaving home again, and his blood counts may improve, right now he wants only cuddles, lots of them. He slept in his own bed for the first time in over a year last night, (his brother slept in the other end). His headaches are becoming more severe, it will be no surprise if the MRI scans show up something else that the CT scan of two weeks ago missed.

We have so many people to thank but immediately I want to thank the other Mums, Tania, Alyssa and Jennifer for helping us pack, cleaning our room at the RmcD House and helping us make it out of the House in time to catch our plane. Our hearts remain at the House with the very special volunteers we have met there, who have become our family, especially Rich, Steve, Emory and Doris - all of whom have helped us through the rough and laughed with us through the good. And to Maryellen who has been a friend since March, who has taken us to her home, helped sell the cards made by so many friends on Do Craft Forum (who have, and continue to, support Jack's Appeal). Maryellen dropped everything on Friday night and stayed with me until the early hours of the morning, helping me pack, keeping me together as I tried to dispose of items that had become precious memories. She gave up her weekend away to return on Saturday with brand new luggage and took us to the airport, has taken charge of shipping box upon endless box back to the UK, I could go on, but she wouldn't want that, none of these people expect thanks, and that's what makes them so very special. If anything good comes out of this sad disease, it is the very special friends we have made along the way, friendships that will last a lifetime.

Finally we ask for your prayers for Jack, but not just for Jack... Please pray also for Lucas Tran www.caringbridge.org/visit/lucastran another special family we became close to at the House. Lucas is now on pallitive care and is receiving pain meds at home.

When our options become clear, we will update the site once again.

Update October 9th

We’ve had another very hot week in NYC… the temperature has averaged in the 80’s and it’s been very, very humid. Every day in the street one can overhear New Yorkers discussing the unusually hot ‘unpleasant’ weather. It seems Global Warming has hit the US too.
Jack began the antibodies again this week. And as can usually be expected of an over-worked health system, the plan has changed yet again. One would not normally associate Sloan Kettering with an ‘over worked health system’, but for the Neuroblastoma team, chaos does abound. There is no criticism intended, the problem is we are like so many others, Sloan is the one place that can help. And so spur of the moment decisions are made, which are later changed at short notice - Jack will now undergo a full work-up before we return, and so where we had allowed time to say goodbye to our friends, our afternoons, which we’d hoped to have free for our last week in Manhattan, are being squeezed tight trying to fit everything in. Wednesday will see Jack having CT scans before antibodies in the afternoon, Thursday will be the Mibg injection, and more antibodies in the afternoon. Further bone marrows will be taken on Friday morning, followed by Mibg Scan, then the last dose of antibodies will be given. We await the rest of the plan which is likely to be scheduled over the weekend.

The week started well, Jack went to see Anne Marie in the classroom on the 9th floor before starting the antibodies. His headaches are much less frequent now, his weight is back at what it was last December, 17.2kg, his hair has grown completely back, in fact he’s badly in need of a trip to the hairdressers, and he is beginning to show the signs of a normal energetic 6 year old.

The antibodies are proving every bit as painful as the previous three cycles, with Jack screaming as each wave hits, gasping for breath, and as the air returns, he begs me to take his pain away. The Dialudit hits home after the second or third shot, and his eyes turn a very pale shade of green, the 6 year old voice slurs words that don’t make sense even to a 6 year old. For the next hour it continues, Jack wants a cuddle on the bed, but as soon as I lie beside him he wants Orange Juice, he asks me to squeeze him as tight as I can, but not too tight, then a hot pack for the next wave of pain, then a cuddle, then more orange (something he craves while he is having antibodies)… and so on… his pain and agitation lasts well into the evening, his weight will drop once again - food will be the last thing on his mind until the antibodies have been concluded on Friday evening.

Last week Dr. Kramer expressed an opinion that there would be no fifth round of antibodies, that we should adhere to what every other child on this protocol had undergone, and begin oral chemotherapy. The fact that this protocol had been formatted because every other child produced HAMA at the 2nd or 3rd round of antibodies seemed to be less of a feature, Jack is the oddity because he hasn’t yet produced HAMA, so why stop it after oral chemotherapy has concluded. I broached this with Dr. Kushner today and this is something that will be discussed at the NB team discussion this evening.

The ideal situation would be for Jack to produce HAMA, as the HAMA at this stage would be a sign of the body making it’s own antibody to the Neuroblastoma cells, or rather, a sign that the 3F8 was doing what it was supposed to.

We have to address the bill at Sloan Kettering this week again. Having such a huge debt is a fearsome position to be in, but we still have Jack, and he has given much hope and inspiration to many other families fighting this battle. It would be a fantastic ending to the story, to be able to resolve the bill once and for all, but the likelihood is that we will continue to pay the bill for many years to come. This however, should not be allowed to detract from the miracle, the miracle being the fact that Jack is alive and doing wonderfully well.
Yesterday morning I read about a family who had a son treated for Neuroblastoma 9 years earlier. He had, like Jack, been given radiation in the brain. Several years later the effects of the therapy became obvious in his school work, his short term memory was non-existent, he had lost the ability to solve problems, particularly mathematical problems, and other practical difficulties had developed. As I read I became scared for Jack, for his future.

I set out for a run around Central Park while Jack slept. The air was warm even in the early morning, the leaves on the trees had started to turn golden, some were dropping gently like giant snowflakes, the kerbside had a thick layer of soft rust that crunched underfoot, running alongside, and the sun glinted golden streams of light through the green and orange, bouncing back off the road ahead. I remembered running in this same spot back in March when we’d discovered Jack’s disease had progressed and we had been given ‘the talk’, the option of returning home. It felt then like nothing in the world would ever shine brightly again, the future could hold only despair, but even then Spring was beginning to thrust it’s way through the snow, and eventually summer arrived. Back then I would have given anything to have had Jack alive, alive in any way, shape or form, I would have been prepared to nurse him disabled for the rest of our lives, just to have him alive, and I realised how very selfish I was to now be concerned about one or two problems that may or may not occur in his future education. He is not only very much alive, he has the same vitality, the same spark that endeared all to him last year, the year before, and the year before that. Twenty or so rounds of chemotherapy… radioactive infusions to his body, to his brain, and a few cycles of antibodies has not killed his spirit, he is very much alive, and for that we are so very, very deeply grateful - to our doctors at Sloan Kettering, - to everyone of you who made it possible, by fundraising, by donating, by helping us spread awareness, by giving us your unconditional support.

UPDATE September

The past week has been another busy one. Several ‘long term’ families have left the House, replaced by new families, strangers. The ‘second floor’ where one could go to simply ‘get out of the room’ or to talk’, meet other Mums and Dads, where the children played together in the evenings, is empty…. No one communes there any longer, once again it has become a dining room, where one eats their food but no one lingers. Within a few days it has become a different place, a new cycle of parents of moving through. It will change again, as families realise their options, and recognise the hidden support found only in others in the same dire situation. I hope we are long gone by then.
Richard returned from the Loneliest Road bike ride, he stayed for two days, helping us pack things into boxes, then left on Thursday. As he waited in the lobby of the House for the car to arrive to take him to JFK, Jack clung to his chest, face down, sobbing uncontrollably. The car was due at 3.30pm. At 3.45pm they were still waiting, Jack still sobbing, reluctant to let go of Richard for one second more than he had to. The day receptionist fought back tears as she watched, she called the Chaplain Cherilyn, to the lobby, but failed to ease the sobbing. At 4pm when there was still no sign of the car, a call was made, we established the car was stuck in the heavy traffic, resultant of the United Nations General Council causing mayhem in the NY infrastructure.

Jack had seen very little of Richard during the short stay, he and I had spent the whole of Wednesday in hospital. He had needed both blood and Platelets, and once again, it was a busy day. We didn’t leave hospital until late into the evening. Jack’s good friend Connor Gerber (also 6 yrs) had left the same day, returning to South Africa to continue chemotherapy there temporarily, and Jack was feeling the additional loss. I endeavoured unsuccessfully to console him reminding him it would be ‘about’ two weeks and we too would go home and see Connor and Rhian and Daddy once again. This had little impact, and as Richard left, passing him to me, Jack’s arms and eyes tried to grasp him and the sobbing turned to one of despair as Richard drove off. This is how he eventually went to sleep.
When Jack awoke on Friday morning, the first thing he said was ‘what are two seven’s’. ‘Fourteen’ I replied. He had begun counting the days.

A beautiful basket was delivered to our room on Thursday – it was filled with the biggest and best fruit we had ever seen, banana, mango, pears, peaches, chocolate biscuits, tea… Jack was surprised by the sheer size of the huge grapes as he tried to force one whole (which pretty obviously was never going to fit in that way), into his mouth….. we have no idea who sent this, but thank you very, very much, it’s truly amazing and Jack is back eating fruit again.

The fathers on the Loneliest Road Campaign concluded the 3,700 mile ride in Roslyn, Washington DC on Saturday 29th September, after three weeks of cycling - away from their families, their children, all of whom were undergoing treatment. These fathers needed our support and we needed to show them our gratitude. We left New York for Washington on Friday morning, travelling with Barbara Zobien, (New York Candelighters), and her small Yorkie ‘Uno’. It took six long hours to reach Washington, Jack slept for the last three of these, but it was a journey in which I wasn’t looking forward to the return.

We stayed with a lady called Meg Crossett. She lost one of her children six years ago, at age 6 to Neuroblastoma… Rachel is remembered throughout their beautiful home. Meg had six children in total, with an age span between 21 and 8 years old. Jack found a friend in Catherine, at 8 years old she reminded him much of his sister Rhian. Meg is one of the strongest and most inspiring women I have ever, or will ever meet again. In two short days she taught me much, and simply talking to her seemed to ease many unresolved worries that lie unspoken. It was a privilege to meet Meg and her family.

We undertook the return journey on Sunday afternoon. Caryn Franca, Mother of 19 year old Nick who is also undergoing treatment for relapsed Neuroblastoma at Sloan Kettering, threw a fantastic ‘welcome’ party for the cyclists at her home in Virginia. I saw very little of Jack, there was too much to occupy him, and on Sunday Morning Meg’s husband, Jim arranged for Jack to join in a hay ride at a local pumpkin farm with numerous large slides and stalls and fun activities going on. Jack didn’t want to leave, it was a gorgeous day, the air was fresh and clean, unlike the air we were returning to.
The journey back was every bit as bad, and it was quite late in the evening on Sunday when we walked back into our room at the Ronald McDonald house, with a deflated feeling, as the week of routine began again.

Tuesday 18th September 2007

Little James Runde died last night. www.caringbridge.org/cb/viewJournal Yet again I find myself wondering why life is so very unfair, why are the good so often dealt an unfair hand while the wicked frequently prosper?

There will always be grounds for complaint of unfairness. We cannot complain about our own lives, simply because others seem to fare better, we are thankful that we are not in a worse situation as many others are. The utopia of a just society will always elude us, but we can help make life fairer for more.

James Runde was a six year old boy, totally innocent and incapable of doing any wrong. His parents Dawn and Jim are devout Christians. One can only ask WHY.

The scarcity of goods and funds is clearly one of the root causes of unfairness, and in the medical world it is very difficult to agree on what is the fairest way to distribute limited resources. How many thousands of adults are diagnosed a year with Prostrate Cancer, with Breast Cancer, with Lung Cancer, and so on….

Neuroblastoma is the third most common childhood cancer… yet in the UK there is no independent Government funding into research, and the only charitable institution who raise funds for research are a small family run charity, called The Neuroblastoma Society.

Each one of you who read our updates and give us incredible support, have made the journey bearable for us. You have given Jack much reason to hope and you have made things a lot fairer for him.

We, in turn, yearn to try to make life fairer for so many other young children struck by this creature, by raising awareness and raising funds to pay for more research to find a cure. We support fully the appeal issued by Dr. Cheung at MSKCC to help raise $2M for a humanized form of the 3F8 antibody. ( www.loneliestroad.org). We are in the process of setting up the UK equivalent at www.j-a-c-k.org which will address the issues of Exchange Rates and UK gift aid. Your help would be very, very much appreciated in helping us promote awareness of Neuroblastoma, and the number of young children lost to it year after year.

Please remember the Runde family in your thoughts and prayers.

Monday 17th September 2007

Jack had a very sore weekend, finding it difficult to walk, and difficult to use the toilet. He has a 6 inch incision on his pelvis, a cut along the underside of the scrotum (which has turned Dark Purple and Black), he also has patches over the four spots where bone marrow biopsies were taken. The results of these are not yet back.

We are, once again, back in hospital and 3F8 has commenced. Last Wednesday the daily GM shots began again, he prefers these injections in his tummy, the fattiest part of the body which will absorb the thrust of the needle and the sting of the preservative slightly more than anywhere else we’ve tried to inject it. He’s now asleep on the bed, having required only two shots of Dilaudit for the pain, compared to the 4 he’s had on previous occasions.

This morning Jack cheered as he remembered he was having 3F8, a tired and agitated little face broke into a smile as I tried to get him out of bed … because he remembered a promise made some weeks ago…. After this 3rd cycle we would go home to London, home to Connor and Rhian… How do I now turn it to misery again, by telling him we would stay for another 4 weeks, until after the 4th cycle of antibody for another CT scan, a full work-up to ensure he was still free of disease, and the start of Temodar. I will, but not today. He’s still sore, but walking much better.

Richard flew in to the House late on Saturday night. He picked up my bike and left on Sunday, travelling to Denver, where he will join the Loneliest Road campaign. www.loneliestroad.org

Jack who was delighted to see him on Sunday morning, was so very sad at his departure a few short hours later. The week will continue with 3F8, and hopefully by next week the soreness will have left his body, and the pain of the 3F8’s will be over for another few weeks.

Please pray that the bone marrows come back clear, and Jack can have a few ‘happy’ weeks here before we return home.

Update 14th September 2007.

I am sitting in the first floor waiting area of Sloan, wondering where to begin this update. Jack is in an operating theatre somewhere on the 6th floor in the hands of strangers.

I have stopped counting how many times he has been through general anaesthetic; it’s not something I wish to dwell upon. Jack having anaesthetic is something I’ve never got used to, it is never a pleasant experience feeling his arms fall limply from my neck which only seconds ago he was clinging to tearfully, begging me not to leave him, to take him home, and walking away as he slips slowly into oblivion. As I placed him on a bed crowded with electronic technology, bright green eyes peeped through the half closed lids, his pale skin wet from his tears. I am ushered towards the door, but I’m not ready to leave him ‘…..he’s not asleep yet, he can still hear…’ my voice deaf to the ears of all present but me, and the door clicks shut.
Through the mist that brimmed over, and the taste of salt on my lips, I found the elevators, uncaring of who watched, and placed myself in the same seat in the lobby of the first floor that I had sat in nine months ago when the same little boy had a tumour cut from his brain. And that is what is so very odd. This procedure is minor, and he is in the hands of one of the very best surgeons in the world, but the pain of leaving him in a strangers hands, never diminishes.

It has been a busy week for us.

Wednesday September 5th saw the arrival of the Met officers, completing the cycle team who would soon embark on a 200 mile fundraising ride for Jack. As usual, on the day of their arrival, we were at hospital.

Jack’s headaches had not dissipated over the weekend, if anything they had become more persistent, and he required a platelet transfusion after only two days instead of the regular six. We hadn’t seen a doctor in weeks; I could only pass messages via the nurse practitioners. One walks a very thin tight-rope – without a doubt our doctors have never been as busy as they have over the last month, and our previous updates relay some of the dark issues they have been contending with. And by now, we recognise that it is virtually impossible for any doctor to examine Jack without scans and say either way, whether there is something growing again inside his head. We would play a waiting game.

Last Tuesday I had promised to take him to the ‘lego’ shop, where he would ‘just look’, but as we left hospital he fell straight back asleep in his stroller. We returned to the House where we were met by Chris, a new manageress at the House, she had rapidly become a firm friend – but he refused to wake for her coercing, and an offering - Star Wars lego. This offer should have sparked a substantial reaction – but not on this occasion. My anxiety had reached breaking point and it showed. I was no longer prepared to play the game. That evening I emailed Dr. Kramer, we already had appointments scheduled with Neurology the following afternoon, and with the surgical team in respect of the Hernia, but only Dr. Kramer could quell the agony of incognisance.

Thursday morning saw us up at 5am in preparation for pre-ride publicity, arranged by Team Continuum with CNS, and later by ABC Eyewitness News in Central Park. The BBC would follow and immediately after we would flee the public relations to the sanctuary of Sloan. There was something very reassuring about meeting the Met Team – most of them for the first time… but they were our friends, they had given up much of their own time in training, beleaguered families and friends for sponsorship and had paid their own flights to New York, to put themselves through a tough weekend of cycling for Jack – a child none of them had met before. I have thought long and hard for an alternative word to humbling, but humbling is exactly what it is.

Even Taff (Mark Edwards) who had ran the New York Marathon along with Chris, and who had put much time and effort into planning and budgeting, participating in conference calls and collating over many, many months, I had met only once before. Taff had met Karen a year before, a police officer from Rhode Island, who shared a tube journey home one evening in London. They looked at each other and without ever having spoken before, recognised their common interest - the same profession, and a friendship begun, one that would a year or two later, impact on us. Karen and her partner, Bob Firth are responsible for the innovation and planning on the US side, and have become firm friends over the months.

The planned afternoon at hospital turned into a long one. A finger-stick indicated Jack needed yet more platelets, and blood too. He was scheduled to receive Pentamadine (a 2 weekly antibiotic), and would see the doctors as and when they became free. We had anticipated being free for a pre-ride Reception being held at the Kimberly Hotel on 50th, where the Met Officers were staying. Ray Kelly, Commissioner of the NYPD would be present, as would the Deputy British Consulate. However having seen our doctors, discussed our concerns, a CT scan was ordered. It was 7.30pm before we left hospital… Jack’s shirt was covered in blood from where he had been de-accessed (peripheral temporary line which attaches to a port inserted under the skin on his chest). The line is a temporary measure, a conduit for the drugs. So we dashed quickly back to the Ronald, found a change of clothes, and another dash to the reception, arriving late, but to a relaxed atmosphere.

Friday 7th and another 5am start, the BBC would see us off from ‘Tavern on the Green’ at Central Park. Jack was exceptionally good about the early departure; he had slept for only a few hours. The Tavern had kindly supplied us with cakes and coffee (and a considerate selection of tea). Even at 6am the air was warm, hinting at another hot day to come. Assistant Commissioner John Yates had arrived late the evening before, and our team was complete with the arrival of the riders from Team Continuum.

Team Continuum would ride on road bikes, good road bikes, with smooth tires, in contrast to the thick, heavy ‘bobbled’ tires of the Metropolitan Police Mountain bikes. We set off from 67th on the West Side, our thanks to NYPD who ensured a clear route along Manhattan down to Harlem and through the Bronx.

It was a hot, humid, sticky day – the whole of it would be spent cycling through heavily congested urban terrain, and along noisy highways. A big red double decker drove slowly behind, carrying our luggage, and the 2008 series BMW with Metropolitan Police markings led the way. The three digit code on the BMW read JAK. Jack however, insisted on travelling on the bus, on the top floor of the bus, where he had great fun playing with the TC support staff. It was 7.30pm when we finally arrived at the hotel…. Just in time for a Radio 5 live broadcast.

Day two was very pleasant in contrast. We had reached open countryside and cycled through Orange County, we had lost the humidity, there was a gentle breeze, and huge hills. Day three was very similar, with slightly less hills… but all in all it was hard, hard work. Most of us struggled at one point or another, but to watch others struggle, knowing they were doing it for Jack…. And I make no apology for repetition, it is a humbling experience.

I had intended writing a brief ‘journal’ of the ride, documenting the toils and the triumphs, but a lot has happened and this update is already huge, to rush an entry would do an injustice to so many. Thank you to all who took part, to all who helped, and to those who organised it. Thank you to Bob for liaising with the different police forces, obtaining so much assistance throughout the whole route. Thank you Team Continuum. Thank you Delena, and the Coach House PH… thank you Mr. Yates and Mr. Taylor for allowing this to happen. A full thank you will be published on-site… and further photo’s once they arrive.

On Monday, and our return to the RmcD House, I finally had access to the internet… there I found an email from Dr. Kramer that brought unbelievable relief. The scan showed Sinusitis… Jack had had a slightly runny nose, but Sinusitis would explain the headaches. For now, the result brought much peace, but we would now be staying until October, and until the conclusion of the 4th cycle of antibody, and the commencement of Temodar, oral chemotherapy. Once this protocol was in place, we would return home.

Tuesday 11th saw us back at hospital. Jack’s Platelets were again critically low, another transfusion was required. We saw Dr. LaQuaglia, the surgeon who would conduct the hernia procedure. His immediate thoughts were ‘We don’t need to do this procedure now, his platelets are very unstable…’ however following examination this attitude changed, when he became aware of exactly how high Jack’s left testicle had escalated. He explained the elevated risk to a tumour forming there, later in life. If it could be brought down, he would do so, but if the blood vessel attached was too short, he would have to remove it completely. Had I been given a choice, I would have asked him to remove it completely… Jack has been so heavily treated there is little likelihood of him ever having children, and it would be dreadful for him to beat one cancer, only to be hit by another a few years down the line. But I was not given that choice.

Wednesday 12th saw the departure of the Metropolitan Police Officers. We had known them only a few days, but over those few days we had made some very wonderful friends. They left a huge emptiness behind.

Friday 14th saw another 5am start, with Jack ready to go on 9th floor at Sloan at 6am. And that brings me back to the beginning of this update. Surgery began at 8am precisely, and at 9.50am I received the call in the Lobby telling me they were ‘finishing up’, and could I make my way to the 6th floor where the surgeon would see me.

At 10.30am Dr. LaQuaglia informed me all had gone well, the testicle had been brought down, the blood vessel was short, the left would be a bit higher, platelets had been given and I would soon be able to see him in recovery. From here on in, he would have to be checked regularly for lumps forming, for any signs of a tumour. Did I have any questions? No…, not any that could adequately be voiced … I wanted to scream, ‘yes… why didn’t you just take it out…’ but Dr. LaQuaglia is world renowned for his ability to remove the most damning of tumours, he has saved the lives of many, many children written off by their own oncology consultants because of position or composition of tumours, prior to deemed ‘inoperable’. It is not for me to question his judgement, and the removal is something Jack may not thank me for later in life.

Monday 10th September

Following hospital on Monday, we returned to the RmcD House at 6pm, and just in time to join in a New York Fire Dept boat trip organised by the House. It had been a glorious day outside, but for us, one spent in the cold air-conditioned 9th floor at Sloan Kettering. The opportunity to soak up some of the evening sunshine was one not to be missed. And so we set off at 6pm on an old blue and white NPYD bus, one of questionable age, possibly assembled in the 60's. The significance of the NYPD buses are merely this, the 19 th Precinct provide significant support to the Ronald McDonald House, assisting with transport and driver to various baseball matches, trips, and the weekly Friday night games in Central Park throughout the summer. The officers who drive have become firm friends of many of the children over the months.

We arrived at Pier 94 with time to breathe in the fresher air and unwind in the warmth of the low sun, while awaiting the arrival of the second cortege, en-route in the Ronald McDonald bus. Shortly later we were off. Of our whole time spent at the Ronald House, this jaunt would prove to be the most memorable. Weeks of sadness around the house, days of treatment, recent concerns about headaches Jack has been experiencing, the tension had furtively been building. We set off with the Manhattan skyline on our left and New Jersey city on the right, the soft hum of the engine barely audible against the sound of the water splashing against the sides of the boat just beneath us. The children too were spellbound by the magic, the Statue of Liberty ahead in the distance drawing us closer. Being out of the house, away from hospital and the world of cancer, the heavy atmosphere slipped silently away, and for the first time in weeks was replaced by a feeling of pleasure. We drew closer to Ms Liberty, so close you could reach out and almost touch the magnificent figure towering above us as the sun set like fire, a vivid red and orange, behind…. Two, three times we circled her as darkness closed in, and in the full moon we began our return.

The children were having much to much fun to be bothered with the 6ft ham salad subs, there were other things in hand, dressing in the fire regalia, steering with the Captain, unwinding the hoses, it was 9.30pm when we eventually drifted back to the pier, no one wanted to leave the boat.

We piled back into the buses, the fun hadn't ended: A challenge issued by the RmcD bus as it sped past us was not one that could be ignored by the NYPD contingent, the blue lights went on, the PA system announced acceptance, and we were off, chasing after the dark red bus almost invisible in the dark. Impeded by traffic they slowed and we overtook with the deafening cheers of children, replaced within seconds by ear-piercing squeals as the red bus caught up and flew past on our left. Jack obtained control of the PA system somewhere at the front of the bus, and for a few seconds while he alluded my grasp, a distinctive English Accent left little doubt as to who instructed the late evening drivers to move out of the way. And so it continued, through the 80's until the red bus pulled off heading East. Big mistake! Traffic would be heavy in the Upper East, we kept on the FDR, having the advantage slightly in the blue lights that flashed above us, pulling off at 71 st Exit, a quick Right then a left and we were back, - no red bus in sight. The children lost no time in disembarking, and we were home.

It is the 'last weekend of Summer' in New York, what an apt title.
I've tried to keep our latest updates brighter, but it hasn't been easy. With the recent relapses and the passing of another NB child, Carter Finger, only 7 years old (www.carterfinger.com) the sadness grows. It swamped the house last night, as we learned that little Lillie Boyte had passed away earlier in the day. Lillie's journey was short, her relapse so very sudden, but there were options – until last week when it was discovered this monster had taken hold of her liver and lungs. (www.caringbridge.org/visit/lillieboyte) Less than a week ago Michelle and Cory took her home. Michelle's journal tears at our hearts as she describes how she prayed, begging the God to take Lillie that very night, unable to even hug her because her pain was too great. This is what every one of dreads, no child should be taken in the dawn of life, no child should have to die in such agony. Please pray for Lillie's parents and Sisters, and also for the parents of Carter.

There comes a point when the sadness can no longer penetrate, there has been too much. That point was reached this week. But with the bad news there are always good. I've heard so many stories this week of grown up NB kids… one in particular struck me, a 21 year old girl who got married at the weekend, who was on her 3 rd relapse some years ago. It is these stories that give us the hope and the strength to continue the war.

Jack has had a reasonably good week. Monday saw us on the second floor at Sloan, having an ultrasound scan in respect of his Hernia. A decision has been made to operate, this is a minor procedure, and will probably take place in two weeks time. Tuesday we had blood tests which showed his Platelets had dropped critically low, as had his blood, the haemoglobin was 6.7. The Platelets was no surprise but it's been a while since his blood counts have fallen quite so low, and he certainly hadn't been lacking energy over the weekend . And so the whole of Tuesday was taken up with transfusions.

The weather has been beautiful this week, sunny, but the temperature has stayed in the 80's. And today, with no hospital, no school, no Richard or Connor or Rhian, we found ourselves wondering what to do … Jack lost his beanie dog called Butch on the way to hospital last week, and every day since has found us searching the local shops for the same dog – but to no avail. And so we set off today in search of another Butch in a more central area of NYC, the shopping area, but, these beanie dogs which can normally be found everywhere proved elusive, replaced by the recently sought after Webkins, which were not an option Jack was given. And so we arrived back empty handed to the Ronald McDonald House, with the promise of never mind, there's always tomorrow. My hope is that by the time tomorrow arrives, Butch might eventually be forget.

Yvonne told me of Lilly becoming an Angel but the e-mail including the thoughts of her family and of the veil, which drew about the house, were things I did not wish to examine. Two weeks away from the House; two weeks of a pretence at there being a world other than that ruled over by NB. Stupid me, seduced by the extension of a leash sufficient to allow me the slippage from the definite article into the indefinte; from the first to the third person.

A fish tank who's confines are defined by the reality of the disease, swimming around a bowl, in the hope that its glass wall will breach into the world beyond. Freedom, life! What a foolish two weeks I have spent exploring an environment that seduced me into believing there was a blue sky and an end to the ice age of Jack's illness. Blue sky, I recall saying that Lilly's mum how I hated the glimmer of blue sky as the grey was harder to bare after such sight.

Four weeks ago we sat on the terrace on the 3rd floor of the House and spoke with Lilly's parents. A conversation caused by the looming cateract of their beautiful daughter's plight. A conversation, hoping for the revelation of an eddy, in which she could float, denying the pull of the falls. These conversations have a common theme; a comparison of course. Where did you start? How hard did you paddle? What whirlpools were avoided? How can we deviate from our rapids to join that journey upon which you set are?

Our river still runs but Lilly's has met a lake of placid splendour and timeless safety. If Jack is enveloped by the white water I trust in his merger with a ripple upon Lilly 's lake.

Panning for gold in a brook, which flows, from spoil pile of accumulated therapies. Flecks of fortune but never the nugget, never enough to..

Monday 20th August 2007
Connor, Rhian and Richard's departure was every bit as painful as we had anticipated.   Jack and I travelled with them to the airport, postponing the inevitable for as long as possible.  Connor had a return flight with British Airways, from a trip home in May to say goodbye to his school-friends.   They would each begin new schools in September.  Rhian still had her return flight with American Airlines, Richard would travel with Rhian and Connor would travel alone.

Connor checked in first, his chaperone was waiting to show him to the departure gate, our time together had finally run out.   Tears that had been thrust back several times during the course of the morning, could no longer be held back, Jack too began sobbing and they clung to each other as each of us fought   against the torrent threatening to overflow.   The chaperone approached slowly, then Connor was gone.  It struck me how easily I had handed my son into the hands of a complete stranger.

We made our way to the airbus together, Richard and Rhian had to get to terminal 4 and time was short.   Neither of us spoke, we felt a mutual emptiness that only Connors return could fill.   Jack and I had to work out how to get back to Manhattan on the subway.   Thankfully as Richard's train drew in, ours did too on the opposite platform and there was no time to shed further tears.  As we looked back through the closing doors, Richard and Rhian were looking back, then, they too were gone.   Jack continued sobbing and a mood of utter loneliness settled on us.  

For the next hour Jack cried.  It was a relief to step out of the subway to the warm evening sunlight, where couples strolled and diners ate outside the many restaurants.    The pleasant ambience lifted our mood  we walked slowly back, and gradually we felt not so alone.

Back in our room, memories swiftly returned, and with them, Jacks tears.

Since then we have kept busy.  Occasionally other residents in the house, or nurses will ask us 'how are Connor and Rhian' and Jack will respond 'Don't talk about them'.   The evening they left also spelt the resumption of the much disliked G shots, the daily injections which are a fundamental part of the current antibody treatment.

Monday morning found us back at hospital scheduled for the second shift of 3F8.   A CBC showed Jack's Platelets had fallen to 16, and a further transfusion was necessary.  The 3F8's started late in the afternoon, and despite 4 shots of Dilaudit, the pain lasted for over two hours, with Jack begging for help thinking his head was exploding. We eventually left hospital at 6.30pm, he was still in pain, but we had pain relief to take back with us.  He slept through the night, waking only for further pain relief and constant drinks of Orange Juice, something he craves while he is on the 3F8.

Tuesday was much the sam e, following two hours of pain we returned to the House where he slept until 9pm, when he became wide awake for the next few hours.  Today, Wednesday, the pain seemed even more intense, if that's at all possible.   After several shots of dialudit, his speech was slurred, eyes glazed, and the pain eased.  In fact the pain relief had taken effect enough for Jack to pull out his loose front tooth, he became very indignant at being told 'no, the tooth fairy won't be bringing 100 bucks'!   Between the spasms of pain, he attempted to negotiate the 'fee' but gave up with an exhausted sigh, exclaiming 'Connor told me there's no such thing anyhow'!

On Monday night Jack developed a huge swelling at the top of his groin.   By Tuesday morning it had gone down considerably, but the doctors were concerned about the possibility of a hernia among other things.    We have been scheduled to speak to a surgical team tomorrow afternoon to establish if the problem is something that needs to be dealt with now, or something that will wait until we return to the UK.   I very much hope for financial reasons, that it is the latter.

Thursday 16th August 2007
It has been a while since our last update, once again there has been little to say of consequence in respect of Jack’s treatment; however your emails have, once again reminded us of the importance of regular updates. Jacks’ blood counts seemed to be steadily improving, having progressed to Platelet transfusions every 6 days as opposed to every other day, as was the situation only a short time ago. We had become complacent with the gradual improvement, until during the week and for no apparent reason Jack fell from a seat, hitting his arm on a table. Although only 3 days from his last transfusion, a huge black and purple bruise spread immediately across the circumference of his arm, - pretty obviously Platelets were on the agenda. The ensuing blood test showed they had fallen to 9. This count seems to be the common denominator ever since. The ‘norm’ falls between 160 and 400.

In the days since our last update there has been much despondency around the House. Great sadness arose from the loss of another friend. Little Nathan Gentry passed away on July 29th, his website reads simply:
Sunday, July 29, 2007 2:33 PM CDT Nathan Michael Gentry took his last breath this morning at 9:22 am with his mom and dad by his side.
http://www.caringbridge.org/co/nathanmichael/index.htm

His parents, Luke and Susan have been a source of inspiration to us, their continued strength and love shone through the days of hopelessness. Please include them in your prayers.

The 8H9 spell has also been broken this week. Little Owen and his mum Karen returned from Washington for routine ‘work-up’s to discover that Owen had relapsed in the leg. Even though Owen relapsed while on chemotherapy, the relapse was caught in the early stages and so there remains a lot of hope for his future. Unlike Lillie Boyt, the most beautiful little blonde 2 year old girl. Lillie had finished treatment involving local radiotherapy, and had gone home to be with her Mum and her new born sister. Lillie subsequently returned for scans - her sister was only 2 weeks old, and while in the playroom at Sloan, she fell unconscious. CT scans taken only an hour or so earlier revealed tumors on her brain that had hemorrhaged. Through immediate surgery the tumors were removed from the brain but, the particular type of beast growing within Lillie has the utmost aggression, and new tumors have begun growing throughout her body, and have invaded her bone marrow. There is little that the doctors can suggest, Lillie is unable to withstand high dose chemotherapy because her body has not had time to recover from the previous treatment, and due to the aggression involved, the doctors would expect any treatment to extend her life by maximum of one year only. Again your prayers are very much appreciated by this family.

Apart from Nathan, two other children within the ‘community’ have died this week also. Not children we have met, but children who have fought the same battle and lost. And for James Runde, another friend, the papers have been signed in anticipation of his admittance to a hospice. The final steps towards comfort, and relief from pain, before the battle concludes. The despondency affects each and every one of us in the same way. Another life lost and who else really cares enough to take a stand, to fund further research? Time and time and time again it reminds us of how very vulnerable each one of us are, how very fragile these young lives are, and that we live only on hope and on faith.

Jack has spent the weeks since the last update, just having fun with his brother and sister. Tomorrow Connor and Rhian return to the UK with Richard. The last few days have been difficult for each one of us. Connor and Jack have spent the time laughing lots and crying lots. Last night Jack sobbed uncontrollably for over two hours before sleep finally took over. None of us wish to be apart, and without a doubt, Jack responds much better to treatment with his family near by, but we must return to work soon, and it is equally important for Connor that he starts his new school at the same time as his new class mates. I pray this is something he will understand in future, and will not hold against us.

There remains much to say, but little inclination with which to say it. Tomorrow will be sad, but I guess that only catches the atmosphere in which this update has been written, and hence the reason for the lack of updates in the past two weeks. I will write a further update for the beginning of the week, once Jack and I have pulled ourselves out of the emptiness.

Thursday 26th July 2007

We have received many queries as to where we stand with fundraising, are more funds required?…

Very simply, the answer is Yes, Jack still needs your help.

The cost of treatment spiralled with a number of complications along the way; Jack unexpectedly contracted Pneumonia at Christmas requiring hospitalisation; In March the Neuroblastoma progressed to his bone marrow, requiring extensive high dose chemotherapy; Complications arose over the Omaya Reservoir in his brain re- positioning itself requiring further scans and surgical procedures to replace it. This Reservoir, which should have remained permanently in place in the brain has somehow extracted itself, this will need to be removed completely, yet another surgical procedure. These are just some of the difficulties that we’ve had along the way that have had a substantial financial impact.

However more importantly, It is crucial that Jack continues treatment for a further year, treatment that will consist of 3F8 antibody infusions every three weeks and low dose oral chemotherapy.

Jack is impatient to see his home, his toys, his school, his friends and his family once again. It is our hope to bring him home to the UK after the 3rd cycle of 3F8 in September, and continue treatment by ‘commuting’, allowing him to live as normal a life as possible.

Our bill has now exceeded $1m. Every penny you have given, every penny you continue to give, to raise, will go towards treatment only. If the occasion should ever arise that we have too much money, then any additional funds will be used to help other children obtain treatment.

Why do we wish to fundraise for research while Jack still needs your help?

Funding for Jack’s treatment is never far from our minds – but having tried many times to secure support from large corporations we have learned the hard way that the life of ‘one child’ is not significant when their money could be used to “help many others”. I will answer that in a moment.

Building another website to demonstrate the necessity for further research gives these corporations the opportunity to help others… By helping fund research, for example Humanised 3F8 antibodies, they could help eventually to save the lives of tens of thousands of children, and speed the journey to finding the cure.

But to answer the point, by supporting Jack, you have given many other families much hope for the present. The JBA has made many Neuroblastoma families aware that there are treatments available outside of the standard ‘UK PACKAGE’, and that there is HOPE. Jack is a living example of that hope. You have helped us extend Jack’s life, ultimately I hope and I believe you have saved his life… we could not have done this without you. Help us finish it.

From Richard
Our focus has been on Jack, our son, but as a consequence of our expose to the cancer for what now approaches two years, six months we have come to appreciate how many sons and daughters of equal standing are engaged in battles just as arduous, just as lengthy. The image, which originally appeared in March of 2005, whereby the odds of Jack surviving the first 12 months were 40% and thereafter 20%, has never left our minds.

In other words, I saw five Jack’s lined up and slowly being killed. And that ultimately there would be just one remaining child after time and the cancer combined to whittle the five down. Our hope was that Jack would be the one left. With your help we’ve tried to anticipate and test the cancer’s ability to kill Jack. We do not yet know if Jack is safe, we will not know for many years to come if he is safe. We do know that if we had not embarked upon this trail of unknown direction or duration Jack’s trial would have been twice over. Jack would be dead.

The children are still lined up, positioned upon their diagnosis and from that moment on there begins the musical chairs. No one knows when the music will stop and for every five children there will, eventually only be one or two chairs remaining – the other kids are out. We have not had it hard and that’s thanks to you. We have not yet had to stare at a dead-end and contemplate the certainty of Jack’s demise. We’ve been lucky so far, as each thrust of the cancer could be met with a medical parry. But how many other families can afford the combination of circumstances, which have led to our luck. Four out of the five duels their children are fighting will only end in the cancers honour being satisfied.

There must be a better, easier and more hopeful way to resolve this terrible thing – better swords with which to arm our children. No single blade, yet forged, will counter all the cunning of Neuroblastoma. Without the help or interest from drug companies to put significant resources, any resources, into finding and testing new weapons – where will the hope be born? Some hospitals, like MSKCC and Vermont and CHOP, and others are trying, but the prospects of a magic bullet arriving without additional help are poor.

There is more than I have said for I have not touched upon the rigours of the children’s fight; the pains, the skeletal bodies, the sickness, the sores, the screams. See the line of five and know that all will suffer the scars of the campaign regardless of their ultimate fate.

Yesterday, in treatment, in pain, Jack said something. Something between the screams and the morphine, something said in all sincerity, in certain belief, “Daddy help me I’m dying; my bones are so weak, they’re melting”. Jack was wrong he wasn’t dying and later he was out of pain. But he’s said the like before, suffered the like before and will have to suffer the like again.

Of course the five Jack’s I visualise are no such thing – multiply the five by hundreds of Jack’s; hundreds each year.

There must be a better way. A way to stop the formation of such a line , a way to prevent the violence of the childrens’ erasure.

That’s why we want to fundraise for research.

Monday 23rd July 2007 Today Jack began the 3F8 antibodies once again. I had calculated it ‘must be’ about 10 months now since he last had them, but I needed to be accurate, I had begun to write the basis for a new website, one which will be aimed at funding further research into the antibody therapy to enable complete effectiveness for all children treated. The fastest and most precise method was to check through the updates on Jack’s website.

I didn’t need to be reminded of each battle Jack has endured in his lingering war against this assailant, but reading the updates brought home once again the pain he has borne, the pain most children diagnosed with Neuroblastoma have borne. I am aware of how very, very blessed we are to have Jack still with us. Jack even now, battle-worn and exhausted, remains the tender, gentle, caring child he was before the war began. The smile has finally re-appeared on his face. It is almost time to remove his armour.

We will never regard ourselves as ‘Disease Free’ or ‘the lucky ones’. This invader can secrete itself for years, many years, then launch a new strike taking the camp by surprise, but we are so very grateful to still have Jack, a Jack showing ‘No Evidence of Disease’, and the treatment he has received holds much promise for the future.

In the cancer community, one phrase is prevalent ‘Never give up Hope’. We have gone through three of these phases, two of which were instigated by ‘the talk’ – (defined again by the cancer community as the consultants method of telling one ‘that’s it, battle’s over, nothing more we can do). But the single thing that has carried Jack through, the single thing that has never let him down, is his complete and utter faith… “Be it unto thee according to thy faith.” Jack’s faith never once faltered.

The Cold War Begins
And today we found ourselves back in the position we were in one year ago. 3F8 commenced. Painful 3F8, which when it hit, knocked the wind from him and left him writhing on the bed in utter pain, unable to speak, or to scream, gasping for breath until it’s tide ebbed. It came and went like labour pains, regular and complete. Jack screamed as each wave hit, crashing in, knocking the wind from him again and again and each time as it left, he could gasp for a hot pack which he clutched to his tummy, begging ‘help me Mummy’, ‘ make it stop’. The pupils of his eyes were pin-points, almost non-existent in a sea of green, pain leaking from his eyes. The 3F8 is attracted by sugar containing molecules called GD2 found on the surface of Neuroblastoma cells. GD2 is also found on the surface of nerve cells. This fact is responsible for the intense pain it causes while it is being infused each day.

Twenty minutes later, three more shots of Dilaudit, and Jack finally lay quiet, exhausted, asleep on the bed, completely worn out. He slept for the next few hours, waking up in the evening, his body aching everywhere, his head, his tummy, his limbs, even the soles of his feet were sore. It was a long day, his Platelets had fallen to 16, a transfusion was necessary, as was a further dose of Pentamadine was given intravenously. The rest of the week has been scheduled consisting of daily doses of 3F8. Jack’s body is gathering a new army, one trained in the latest technology.

Your Prayers:
There is another family that needs your prayer, that of James Runde. James is the same age as Jack, he and Jack were on the same 3F8 cycle last year, they both relapsed around the same time. It’s been many months since we’ve seen James, but the family visited the RmcD house last week. His disease has progressed - his parents sought options at both Chop (Children’s hospital of Philadelphia) and at Sloan Kettering. Both institutes have offered only palliative care, giving James between 2 and 6 months to live. This was hard to believe, James looked wonderful and was energetically climbing over his father.
http://www.babiesonline.com/journal/journal_view.asp?be=o/our_boy or http://www.jamesrunde.com
This family have had ‘the talk’. To those who continue to pray for Jack, we are very grateful for your continued prayers, we and would ask you to include James and his family also in your thoughts and prayers, that they do not give up hope and continue in ‘the good fight’ - that the chemotherapy will have some affect on the cancer.

View Archive of Updates on Jack