Dear Friends,
First of all, we would like to thank you all for the support and the help that you have given Jack Brown and his family in his appeal to raise funds for the antibody treatment of the rare cancer from which he was suffering, Neuroblastoma.

Until November 2006 , Jack was doing well and had attended his antibody treatment at Memorial Sloane Kettering in New York. He received four cycles of treatment and was due for his fifth on the first week of this month. Almost 2 years after Jack was first diagnosed with this awful disease, Yvonne and Richard started tentatively to plan the future with their children (Connor, 10 and Rhian, 6 and of course Jack) thinking that if Jack were to relapse they would have at least 2 to 3 years (based on the fact that most children who relapse do so 2-3 years following NED status). They were trying to achieve, once again, some kind of normality. Sadly, this came to an abrupt halt.

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June 2007 Message from Yvonne: APOLOGIES TO ANYONE WHO HAS EMAILED ME (yvonnebrown@fsmail.net) RECENTLY AND NOT RECEIVED A REPLY, MY EMAIL HAS BEEN GIVING ME PROBLEMS AND THIS MORNING THE INBOX COMPLETELY DISAPPEARED. I AM NOW REVERTING TO A NEW EMAIL ADDRESS: londonderryair@gmail.com

1st May 2008

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

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

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

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

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

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

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


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

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

15th April 2008

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

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

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

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

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

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

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

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

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

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

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

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

Update 4th April 2008

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

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

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

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

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

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

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

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

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

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

22nd March 2008

Back together: Measured steps.

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

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

Yvonne has already described the house; our room.

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

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

Ear infection seems resolved.

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

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

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

Update 11th March

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If you can think and not make thoughts your aim;

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

…………………..You,  my son, are a man'.

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

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

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

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

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

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

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

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

Update February 6th, 2008

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

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

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

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

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

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

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

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

Everything is possible for he who believes Mark 9:23

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

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

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

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

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

Update 1st February 2008.

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

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

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

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

How Long?

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

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

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

How long until it's over. Over.                    Over

Two days ago:

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

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

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

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

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

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

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

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

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

Today.

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

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

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

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

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

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

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

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

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

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

Christmas was great!

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

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

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

But what next round?

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

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

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

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

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

Update 20th December 2007

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

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

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

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

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

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

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

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

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

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

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

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

Philipus Aureolus Paracel

Update 19th November 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update 6th November 2007

Room with a View.

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

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

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

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

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

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

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

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

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

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

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

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

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

UPDATE October 24th

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

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

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

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

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

Our grateful thanks

Yvonne, Richard, Connor Rhian and Jack

UPDATE October 21st

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

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

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

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

Update October 15th

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

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

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

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

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

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

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

Update October 9th

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

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

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

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

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

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

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

UPDATE September

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

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

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

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

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

We undertook the return journey on Sunday afternoon. Caryn Franca, Mother of 19 year old Nick who is also undergoing treatment for relapsed Neuroblastoma at Sloan Kettering, threw a fantastic ‘welcome’ party for the cyclists at her home in Virginia. I saw very little of Jack, there was too much to occupy him, and on Sunday Morning Meg’s