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