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.

read more...

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

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

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

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

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

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

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

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

Thursday 26th July 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s why we want to fundraise for research.

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

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

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

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

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

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

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

Sunday 18th July 2007 Jack made it through Wednesday without vomiting, now and again putting himself to bed when he felt unwell . Outside the temperature hit 95 degrees, the humidity increased as surrounding tower-blocks soaked up the heat, and air conditioning spilled it back out at street level. The air was thick with city grime, a hot hair dryer was being blown across Manhattan. It was a good day to be inside.

Relief came in the evening as the sky turned dark and at 6.00pm thunder began to beat a heavy irregular rhythm across the blackness. And then the rain came, heavy and hot, and within seconds one was soaked through to the skin. It rained for maybe two hours but very soon the humidity was back.

I can relate the weather to treatment… you’re told ‘the plan’, then a build up begins to happen, complications set in, and the way ahead becomes vague in a varying mist of opinions … Relief comes when one of those ‘opinions’ is what you want to hear...

So, the way ahead?..........

Sometimes I feel like a fraud writing ‘the plan’. A fraud in the sense of a fortune teller whose powers of prophecy are nothing more than smoke and mirrors." I see a definite...’you will meet a’......”I feel you will start a new...." etc, etc. Generic waffle, which suggests of nothing other than ‘there is a future’.

Perhaps that is the point, for despite there being nothing concrete beyond tomorrow, I can at least forecast tomorrow and this is how it looks.

The second dose of 8H9 is a definite no....at least for the foreseeable future. Jack's liver function is prohibitive to anymore of the 8H9 antibody. Further, the omaya reservoir was reported on a CT scan to have been resected? …………..Unless the resection had been conducted during the night as we all slept, this seemed unlikely.

The explanation today appears to be Jack's omaya has been ‘sucked out' of its position within a ventricle in the brain; then curled itself between the skin and the skull. Why? Not a clue but it seems Jack has an innate ability to compromise the device. I think of him as the Uri Geller of the world of neurosurgery. Uri's spoon bending being Jack's omaya repositioning.

The HAMA remains negative and Jack will therefore recommence the 3F8 antibody. The precursor GCSF shots began today and the 3F8 will begin on 23rd July. Jack remembers this procedure and over the last few days he's sought reassurance that ‘today’ is not the day he has the injection in the leg.

The good news:
MIBG scan - clear. Bone marrow biopsies - clear. CT scan - clear
Neuroblastoma.........anyone seen Neuroblastoma? A roll call and we're lucky. There has been a lot of bad news at the House this week. But or once, for Jack the good guys are all present and correct. No news about you know who and the class breaths a collective sign of relief. I know how it is to hear that roll call and to be privileged by such a positive response. I just wish that the role call signified a certainty that the NB had absented itself from Jack.

Over the weekend something amazing happened. I accept a certain dent to the pride as I have tried on many previous occasions to prove that fishing equates to catching fish. However, the necessary proof has always lacked a vital ingredient, namely a fish. I have become exceedingly good at 'post fishing analysis'.....' the other type of worm would have worked,.....the tide was on the ebb,......that loss of tackle was not a rock but something pretty big and powerful, perhaps a shark'. The kids have grown wise to my expertise but have never lost the faith. Its creed - Fish do indeed exist and can be caught. I love my children.

Well Sunday and without any input from his father, Jack caught a fish. As we grabbed the fish, Yvonne ran for camera, and I juggled fish, Yvonne switched camera on, - ......the fish was very slippery and - .........sorry Jack.

So there is no documentary evidence of the said fish but as I explained to Jack this bodes well. By the morning the fish's length will have magically expanded by 6 inches; in a week's time 12 inches, and by the time Jack is seven the fish will be a legendary monster, a mythical animal that anglers refer to in whispered reverence....

And maybe it does vindicate faith, a belief, that if you keep casting for a cure it will happen.

Thank you Rick, Ricky, Elizabeth and Maryellen.

There are times you must trust that silent voice inside you. The experts don't always have the right answers. According to the laws of aerodynamics the bumble bee cannot fly. I guess no one bothered to tell the bee.

Wednesday 11th July 2007

It’s all ‘small stuff’
The week sped by as sickness hit room 613 at the Ronald on Thursday afternoon.

Connor and Rhian had broken up from school the week prior, but on Thursday afternoon Tonsillitis caught up with Connor, something he seems to get every year. In addition to Tonsillitis he began having high fevers and vomiting, and inevitably, the following afternoon Jack too began vomiting.

Following Richard’s conversation with Dr. Kramer, I spoke at length with Dr. Modak on Friday morning. I felt more positive upon his assurance that should the liver abnormality levels drop sufficiently quickly, there was still opportunity to receive the second dose of 8H9 – if the missing end of the omaya reservoir inside Jack’s head could be ‘found’. Dr. Modak did not believe the liver abnormalities were related to the 8H9, the radioactive element was only now beginning to kick in and could be observed through the sudden drop in Jack’s Platelets.

However it would be futile putting Jack through a second dose if the ultimate result was Acute Liver Disease, and certainly the ASL levels were indicative of exactly this. And so the road ahead should the levels not decrease quickly? – Back to the 3F8 which he was receiving last year.

Upon Jack’s relapse back in November, we remained positive about the success of the 3F8 for Jack, he had relapsed in the brain only, nowhere else in the whole of this once heavily diseased little body had the disease been able to re-seed itself. However when we discovered in March that the disease had progressed into his bone marrow despite being on chemotherapy, I had to wonder. Now the conversation with Dr. Modak once again was enlightening. Only 2 marrow aspirate slides (out of 42) showed traces of Neuroblastoma , indicative of relapse in the earliest stages. It was only later when the Marrow biopsies were returned that doctors believed the disease was much heavier in the marrow than initially thought and switched Jack onto a high-dose chemotherapy. According to Dr. Modak the majority of these cells transpired to be ‘negative’ indicating only one small NB cluster existed in the bone marrow and the likelihood is that it had escaped from the relapse in the CNS (Central Nervous System ). So the 3F8 in all probability had worked, and should a blood test show Jack is still HAMA negative, he will resume the 3F8 antibodies.

At it’s most basic, the difference is this… The 8H9 antibody carries liquid radiation directly to the cancer cell. It is the antibody that seeks out and tags the cell and allows the liquid radiation to kill the NB.

The 3F8 is designed to prevent relapse, in much the same way the antibody tags onto the cancer cell, however as it carries a mouse derivative, the immune system recognises the non-human element and attacks, taking on the shape of the NB cell and teaching the immune system to recognise NB cells as they form/duplicate in the body.

And so the weekend was spent with two sick boys. Connor was unable to get out of bed, chills and shuddering swept his body as his temperature soared, and his tonsils seemed to black out his throat. It was probably a good thing for him that he had no appetite. Jack, although sick, had no fever and didn’t have tonsillitis. The longer his headaches persist the stronger I suspect these are related to the ‘missing’ end of the reservoir inside his head.

Just as we’d decided to take Connor to Urgent Care for a proper diagnosis - he improved. However for Jack the sickness has persevered. He seemed a little better on Monday when we returned to Sloan Kettering for further blood tests, more Platelet Transfusions and bone marrow biopsies. He hadn’t eaten as he was due to have general anaesthetic for the biopsies scheduled for 11am, but on Monday afternoon when we returned to the Ronald McDonald House, the vomiting returned too. But still he had no fever. We had been given containers to collect samples, but the projectile blasts proved too strong for Jack to hang around waiting for his parents to grab bottles. His lack of ‘fuss’ was admirable -he would jump from the bed and his little legs would sprint to the bathroom, hands clutching his shorts at both sides in fear that they might fall from a body that is rapidly losing any weight he might have gained since Christmas. It is difficult for anyone to know if the sickness is a result of the treatment or if he has caught a virus from Connor. We tend to believe the former as the blood results have rapidly declined this week too.

Wednesday 4th July 2007 The roadmap, the plan once again has changed. In fact every time I hear or read the words 'road map' it seems a portent of losing 'the way'.

Monday should have seen Jack's admission for the test dose of the 8H9 on Tuesday. Our visit to the hospital entailed a platelet infusion but a postponement of the admission. ' The Nuclear Medicine people have not had time to attach the isotope and it will not be ready until the 5th'. So Jack left the hospital and we took on board the plan for us to attend urgent care on the 4th for admission.

Tuesday, we knew, would entail a blood transfusion as Jack had slipped below the 8.0 mark. And the transfusion passed as a matter of routine. Routine but it should always be remembered how precious the gift of blood from some unknown person is - to Jack and all those like him. As usual the pre-meds caused Jack to slip into a deep sleep. Woe be-tide any who choose to disturb the slumbering MJB, as his wrath has no equal.

Just before the transfusion ended I was asked to see Dr Kramer. I assumed it would be to confirm the plan for the 4th onwards and it was but there my assumptions ended.

The preliminaries over and the crux of the conversation came but its significance didn't dawn on me for several seconds. It went something like this:

" I've been checking Jack's liver function and the numbers have been consistent until yesterday. Yesterday one of the numbers was in the mid two hundreds not the 50 to 100 band"

" What does that mean"

" Well Jack hasn't had any treatment except the 8H9, which is likely to have caused the figure to go so high".

" Do we treat effect"

" No it should go down, his numbers aren't back yet today but I would expect it to go down after a maybe a week".

[ So I'm thinking ' we're delayed for another week while this blip sorts itself out' ]

" So we'll have to wait until".....

" We've had one patient on the trial who had a similar increase and in their case circumstances were different. There was residual disease so in spite of the increase in the indicator re the liver function I was able to outline to the independent review board that there was no other option but to continue with the second round of 8H9"

........... and then I slowly realised the impact of what was being said, there was to be no second dose of the 8H9. Where there might have been protest, argument, an urge to persuade, the wind was sucked from my sails. I was left stationary drifting aimlessly in a sea without direction or cause......

" But what we'd like to do is re-check Jack for HAMA, ( it has been negative up to this point), and if it is still negative resume the 3F8 antibody".

So it has changed again. Our feelings? Well to us the 8H9 was the significant defence; the uppermost parapet in the castle built to protect Jack from the cancer. We'd built one course of masonry and assembled the bricks for the second course but a weakness in the foundation means that it will never be built. The terms of the trial and its purpose being to assess only the safety of the 8H9 means it's effect on Jack's liver draws a line under this course of therapy at this time.

There is some comfort from the decision concerning the administration second course of 8H9. The comfort comes from two sources. Several children who began the trial have had ‘less’ in their two doses than Jack has received in his one dose, ( level of radiation). Further Jack’s headaches or his comments concerning ‘feeling strange’ have escalated. Not an immense worry but the thought of him receiving another large dose of radiation had begun to play on our minds.

As we look at Jack's castle and it’s precarious position the questions are those which any child might ask of their Keep crafted on a beach. Is it built of sufficient stone? Is it in a location just beyond the biggest waves and the crest of the tide? Can we reinforce its walls even as the tide and waves begin to undermine its structure? Will the sand of the 3F8 serve a purpose in patching any erosion?

But unlike the castle in the sand ours cannot be rebuilt. The castle stands or falls as it's present construction allows.

The defences must by now, be high enough, strong enough to survive the potential flood posed by the cancer.

The tide will remain a threat for along time but we hope that its high water mark has been reached and that its recession is about to begin.

We hope that today (4th July), marks Jack’s celebration of the beginnings Independence from Neuroblastoma. But, that evening as families from Ronald McDonald House watched New York’s fireworks, I could not but help ponder how the magnificence of the display was masked by the pall of smoke created by the force and duration of the barrage. The smoke was trapped by the wind and damp. It hung between us and the site of that which we were so intent on experiencing. How I wished that Jack’s future would rid itself of smoke and clearly reveal it’s design.

One day at a time. The smoke will eventually clear.

Monday 2nd July 2007 Yesterday was Jack’s 6th birthday, 01/07/01 – a milestone which on many occasions we never thought we’d reach. The day before was Rhian’s 8th birthday.

It was a beautiful weekend, the temperature had mellowed and averaged 79 degrees Fahrenheit and so the majority of the weekend was spent in Central Park.

Jack’s headaches worsened last week and have remained persistent throughout the week. We were semi-assured there was nothing to worry about so long as he wasn’t nauseous at the same time, however on Saturday evening while on a RmcD House outing to Dylans Candy Bar, he was physically sick. Mercifully there was a plastic bag on hand, which Jack coped admirably with. His loss of appetite over the past few days remains, and his energy levels seemed to have decreased. MRI’s were conducted on Wednesday and Thursday – and on Friday we were informed the report was satisfactory but our consultant commented on the fact that the omaya reservoir wasn’t obvious in the Mri…

And on his birthday, having requested we take a small rc boat to the lake in the park, he fell asleep before we could put the boat in the water, and remained asleep for the next few hours. On our return to the Ronald McDonald House, he was woken and given a huge box which had been sent to us by a wonderful lady called Marcene, who spotted Jack on Post Pals website, and has been sending him letters and pictures routinely. The box contained lots of goodies, including a great pair of shorts, fantastic T-shirts for Connor and lots and lots of little toys. The children had a fantastic time exploring the contents Marcene, thank you very, very much.

Jack was due to be admitted this afternoon for the 2nd dose of 8H9 tomorrow. However on our arrival at Sloan, a telephone conversation between the receptionist and the ‘team inside’ indicated potential problems. Jack had fallen asleep as we began the walk to hospital and remained so throughout the wait. On querying the problem it seemed that everyone at hospital knew it wasn’t going to proceed today, but someone had forgotten to tell us. It appears Nuclear Medicine hadn’t prepared the 8H9 and so admission would be postponed until Thursday. However a CT scan had been requested, as the Omaya Reservoir still hadn’t been located in the MRI scans…. Jack finally awoke to his finger being jabbed by a needle - a finger stick blood test, which he wasn’t terribly happy about, his irritation only grew when shortly later it was followed by a comprehensive blood draw (involving accessing his port – and yet more needles).

Last week Jack remained perfectly still through two 45 minute noisy MRI scans. These are the scans which really scare him, but once again, his bravery shone through, and although tears ran down his face during each procedure he didn’t move a muscle. His displeasure now however at ‘yet another scan’ became vocal. But like his sister, even the most obstinate decisions can be overcome by the threat of McDonalds. I justified it by the fact his birthday had passed with absolutely ‘no rubbish’, in fact, in hindsight, it passed with absolutely no food at all, and so under promise of McDonalds he jumped onto the bed, head in place and underwent the scan. I felt slightly cheated when this particular scan only lasted 5 minutes, and wished I’d held out longer before resorting to McDonalds.

Jack’s blood counts had fallen dramatically. His Haemoglobin was now down to 7.8, he needed a blood transfusion. His Platelets were ‘critically low’ and he needed a Platelet transfusion. So yet more blood was taken for a ‘type and screen’ so the blood could be ordered, and we were allocated a bed in the day care centre. Jack slept through the whole procedure, but woke up as we were leaving the hospital to remind me about McDonalds…. Very reluctantly I bought this on the way back, and once in our room he ate it and fell straight back asleep again for the rest of the night.

The question is why? The tiredness, the loss of appetite, loss of energy, and the sudden drop in his blood counts! I hope and pray that it is this… We know 131i Mibg continues to work in the body for weeks after administration – 8H9 is basically the same radioactive iodine that is used in 131, the difference is that it is attached to antibodies to enable it to ‘home in’ on cancer cells only, and therefore having greater effect against the NB cells. I am hopeful that it is the 131 ‘kicking in’ period that is making Jack so tired and listless, and nothing more sinister.

Finally, a huge thank you to those of you who continue to help us in our fundraising efforts; We strive to save money in every way we can, (ie. Buying medicines from external pharmacies which is much less expensive) as we are very, very aware that each penny has come from the huge and strenuous efforts of so many. There is no way of communicating how very deeply grateful we are to everyone who has helped us, who has cared about us, who has taken the time to contact us. Funding remains at the forefront of our minds in relation to Jack – but we are desperate also to try and help fund the ‘potential cure’ referred to in our previous entry. Not only would this help Jack, it would help hundreds of other children too.

Any thoughts or ideas are welcome. My new email is londonderryair@gmail.com

Yvonne

Monday 25th June 2007 - Curves, maybes and an invitation.

The meeting with Dr Cheung was a crowded affair, with a substantial number of parents sat and stood in the conference room of Ronald McDonald House. Our anticipation was for an eureka moment. Could there be, here, an indication that the invincibility of stage 4 Neuroblastoma was now compromised. But in reality the situation was not befitting of such an announcement and our conviction in such a declaration was more akin to that held by a casual participant in a national lottery, with one ticket, as they watch balls tumble.

So what occurred? We are not going to detail all the scientific discussion; as it becomes a jargon without meaning. We can comprehend the terms but, in the detail, have no ability to extrapolate from that, which is possible now, to that which maybe possible tomorrow. However, the broad analysis is another matter and what follows is our interpretation of the 'big picture'.

The curves. The curves drawn by Dr Cheung were those we were all familiar with. The curves associated with life expectancy as experienced by the children with stage 4 NB. The artist who crafted the curves had 20 years of practise in their sweep. But despite the probability of each curve dipping towards the conclusion of demise, Dr Cheung's accompanying narrative told of how the inevitable of 20 years ago was now significantly eroded. Following diagnosis the prompt use of 3F8 had enabled both a reduction in harsh chemotherapy and an increase in the disease's control.

The seemingly inviolate conditions of refractory and relapsed NB were possible to compromise in some children. Not many kids but some and every parent in the room knew the value of the word some in their own assessment of what was necessary.

In recent weeks the 8H9 antibody, ( Jack being between cycles 1 and 2 of such), has accrued an aura, a hint of elixir. The curve relating to the involvement of Central Nervous System relapse was more of a straight and sharply descending line. The line dove into the horizontal axis at 5 months post diagnosis. But with 8H9's involvement, with surgery, with radiation and chemotherapy the recipients had resisted the illness. In fact their line floated across the page, a straight anomalous line and without any signs of flexing. Their was tacit agreement that the mechanism by which the disease remained quelled both inside and outside the CNS was unknown. The 8H9's design for CNS relapse had not included an obvious ability to effect the NB's development outside the CNS.

There was discussion of the new trial involving the 8H9 and systemic disease. It was emphasised that the study's purpose was confined to the tracking of the antibody's passage. In both aspects it is our interpretation that the potential for the 8H9 maybe great. And there's our first use of the 'maybe' word. We liked the frequent use of the word 'maybe' by Dr Cheung as walked us through the regimens being formulated by his office.

The invitation came following mention of the familiar refrain, 'no drug companies are willing to conduct or fund research involving NB'. A less familiar and more stinging comment brought a distinct sense of unease. The comment was in the context of MSKCC's abilities to support some of the potential areas of reward. The hospital, is a crutch in the obvious sense but also in an almost mythological way as it's ivory towers provide a protection beyond simple medicine, it offers answers. Now, there was a hint that despite answers existence - their offer might be denied.

The invitation was to us, the parents.........'You can do something you have the power'. This was not a call to arms, not a call for us to grasp cudgels and torches and march along York Avenue. It was an invitation for the parents to look above the parapets of Sloan and take the potential answers incubated by their research and have them born elsewhere.

The suggestion. The potential of 3F8 was revisited, the potential and its limitations. It was suggested that there could be significant gain to be made from the translation of the 3F8 from its 'mouse' based construct into a humanised form. The effectiveness of the 3F8 to treat NB was thwarted by the specific characteristic's of a child's white blood-cells and those cells abilities to link to the antibody. Three groups of children had been determined; those with high, medium and low abilities for the white blood cells to link. The higher the ability the more successful the therapy. If the 3F8 could be humanised it could also be tailored to compliment the three groups. With tailored humanised 3F8 the process of 'screening' children to determine their group type, already possible, would be worthwhile.

The gift. The gift offered by Dr Cheung being that the 3F8 has no ownership. The process of designing and manufacturing the humanised form of 3F8 is a possible process. In fact an outside lab set up to perform such functions should find no obvious or particular difficulty with the process. The time frame of making the drug is that of now, and not a distant dream.

The body shock. The cost. This was a guess and there's no hold to the figure mentioned by Dr Cheung but when someone asked for a ball park I assumed, it seemed that many assumed, 10's of millions of dollars. 2million dollars!

Do you know that there are single cases, of treatment, which receive bills in that same ball park.

There was talk of the vaccine and its possible arrival in a few months. There was talk of differences between regimens, there was subtle discussion, but the impacts of the night were the potentials in the 8H9 and humanised 3F8.

Later that night on television, there was a discussion, about the presidential campaign and the economics of entering the fray. There was commentary on the $800,000,000 dollars available to one potential participant - $800,000,000 just to attempt to get elected - just to have the chance of making an impact. I am not judging the process but could not sleep without the juxtaposition of the two figures seesawing in wild imbalance.

Maybe, the invitation, will lead to the flattening of the curve.

Friday 15th June 2007 On Tuesday 12th June 2007 we received a visit from Assistant Commissioner John Yates. Mr Yates found time amongst his busy schedule to spend time with us at Ronald McDonald House. An unexpected aspect was his granting of a commendation for a particular investigation during 2004 and 2005. Hence the photograph featuring me, Jack, Mr Yates and two NYPD detectives. However, having dispensed with formalities Mr Yates spent time being shown about the house by Jack. On a sincere and personal note Yvonne and I were extremely pleased to have been fortunate enough to meet with and discuss the course of Jack's treatment with Mr Yates. The support of The Metropolitan Police Service has, at both the corporate and the personal level, been outstanding. Such support has always been generous, consistent and compassionate. We are indebted to officers and staff from throughout the organisation for providing us with such a firm foundation. A foundation, which enables us to provide Jack all the commitment he so desperately needs to continue the fight against the illness and effects of it's treatments. The visit by Mr Yates embodied what I have attempted to explain in the last three sentences.

Wednesday 13th June the furrow between Ronald McDonald House and Memorial Sloan Kettering was ploughed a little deeper as we went to discover the trend in Jack's blood counts.

Uhmm, blood counts have held up following 8H9. - 9.3-1.7-74-2.5, another day, another bath .....................the benefits of not being accessed.

I found today very inspiring at the hospital. The playroom had been cleared and chairs set-out; balloons floated, people in smart dress populated the area. Then a group of about 15 teenage kids entered. All were dressed in mortarboard and gown. I recognised some, not many. If I had not seen the familiar faces and not been in the surrounds of MSKCC I would have thought no more than a general 'well done' at their passage from high school.

But I knew the place and noticed the pump still attached to at least one of their number; crutches; bald heads and scars. But where there might have been a weariness at the added friction each student had endured during their journey to this day none were diminished. Nothing seemed to weigh the students down, nothing could stain their aura, as the halos of their achievements shone brightly.

I could not help but think of the excuses that I had used to justify a lack of achievement. Shame crept over me as I considered the students' twin victories both over their cancer and that of their academic triumphs. The nurses, the staff and the doctors, stopping their daily tasks and joining in the celebrations and applause for their patients' efforts. I wondered at the private satisfaction they must take in seeing the success, their success in securing days such as this for children such as these.

I could see the pride in the faces of the parents – not just the pride of a parent at a graduation but a pride distinguished and made stronger by the weathering of their son's or daughter's illness. I imagined them in moments of quiet distress fearing that such a day might not be. For their pride was one not just for what the day was obviously celebrating but also a response to the unending whisper a parent of a cancer child cannot shut out. Today I hoped that their whisper was hushed.

Jack was playing at a table, making a necklace for his mother. Jack had managed to entertain two of the volunteers with some inane nonsense and there was laughter in the air. I wondered at Jack wearing a gown but as my visualisation began to form, I heard the tinnitus of my whisper and Jack's image faded. But the real sights and sounds and victory of the graduates will not fade.

Got to the end of the week with less hospital intervention than at any time in the last 6 months. Jack made it to Friday afternoon; then platelets but it's a good sign and we know were one less week away from the second 8H9 dose!

Monday 11th June 2007 So far so good. The steep curve of pain, caused by the 8H9's infusion, seems to have subsided in an equally dramatic manner. Jack has complained of headaches and 'feeling funny' but nothing compared to the extremes caused by the medicine's delivery. Fortunately, nothing more potent than Tylenol has been needed to quash his discomfort.

Blood counts are pretty secure. On Friday Jack received platelets as a presumptive step to boost levels over the weekend such that should there have been a big fall it would have been from a safe elevation. The blood counts today showed a drop but nothing which caused any consternation at the hospital and they actually made us feel pretty positive.

The post-injection scan showed a good distribution within the CNS and cerebral fluid. Hopefully this means that the 8H9 was able to permeate throughout the brain and spine bathing any neuroblastoma cells in radiation.

There is an air of uncertainty, perhaps akin to a hush before a storm, but maybe, maybe the storm is over and for now Jack will have calm, ensuring a smooth passage towards his second dose. We now believe that the next dose will be in the first week in July.

Wednesday 6th June 2007 Update from Yvonne June 5th was a beautiful warm but humid day. Jack was wide awake and happily refusing to brush his teeth when I arrived at hospital just after 10am. I had spent the previous weeks, days, hours, wondering what would happen to prevent the injection today. We had been this close on so many other occasions. By 11.30am he was fast asleep, very unlike Jack - but that's something I wasn't going to dwell on either. Tiredness is one of the very first symptoms of this disease returning, but it's also a side effect of many other things.

The white coats appeared at the door at 3.50pm and Jack immediately recalled the scenario of a week ago, and the 'test' injection into his head. The same sense of foreboding prevailed. The white coats silently opened packets, removed syringes from wrappings, cleared his table of lego, replacing it with sterile equipment, logs, and a thick dark grey stainless steel needle, and Jack began sobbing as he realised what was happening and worse, his inability to control it or prevent it. His distress only increased as yet more white coats flocked around, as antiseptic fluids were rubbed over his head, and then it was done, the needle was pushed through and in place.

With the needle in position Jack calmed down, and we waited for the Professor of Neurology to attend bringing with him the radioactive iodine and the 8H9 antibodies. While we waited, Jack kept asking why did he have to do this, why couldn't he go to school, why did he have to keep coming to hospital, why couldn't he go home to England... and I sat with him on the bed, thinking how on previous occasions when unpleasant substances were administered or painful procedures conducted, he would grasp me crying, begging me to make them stop, and I felt a selfish relief that this hadn't happened, that he had finally accepted, maybe understood, that there was nothing I could do about it either..... and I tried to recall, did I ever tell him that that was all I wanted too, for him to go to school, for us all to go home, to go to work, to live a normal life, blind to all the sadness and pain and utter despair that we've seen and shared along the journey. But life will never again be 'normal', whatever the destination, we've had an education in 'life' that must be put to good use.

Jack remained calm while the Iodine mixture was pressed slowly through the plastic syringe and into his head, but within seconds he reacted unexpectedly - quite suddenly there was pain everywhere, in his head, his eyes, his bones, his legs, his tummy... pain relief was brought, then more, and yet more, and yet again we cried together as Jack clung to my neck. About 30 minutes after the injection, the pain reached a tolerable level, but itchiness had set in, and he scratched at his face, his chest, his legs. The pain relief is a favourite - Dialudit - which has much greater effect if 'pushed' intravenously as opposed to infusion with fluids through a drip. The effect is one that might well be associated with controlled drugs of the recreational variety...

The pain became more and more controlled over the evening, although he was sick, which involved bed changes - but the sheets were left on the floor, as nursing staff were unable to dispose of them due to the radioactive contents. A screen had been placed in the room with instructions to remain behind it and at a distance from Jack, protection against radiation eminating from Jack. However - Jack needed cuddles, - lots of them. The screen was removed to outside of the room, we slept on his bed together, took him to the toilet together, woke up for the hourly visits together......it is to my utmost pain that I cannot fight this battle for him, but like every other parent of a suffering child, we can fight it together, no screen required.

Wednesday 6th June 2007 Update from Richard There are some things that you do not forget. Some things are invincible to the passage of time and chrome plated against the corrosion of recall's lapping waves.

Instances, which survive my failing mental circuits include the first few seconds I ever saw my wife to be and the births of our children.

The room at Barnet Hospital in which I first heard the word neuroblastoma; the last glance of Jack, anaesthetised, slumped and on route into an operating room; the first sight of Jack afterwards, curled, swathed but breathing......

Today at 4.00pm is such an instance....a small amount of colourless liquid travelling through a short tube into a needle. The liquid's passage beneath his skin and into a dimension defined by science, the Central Nervous System, but unknowable as anything other than Jack. Its not the act or the fear in Jack. Its because today should be a chock stone in Jack's therapy, with its insertion the structure for his cure can stand and can hold. Unless the stone could be placed the structure was doomed to be washed away by the cancer's enduring flood.

I know this is a scientific process, there's a calibrated quality to the fluid and a precision to the components of antibody and radiation. And the science is not without a beauty of its own. But Yvonne and I know that the science and it's purposes are not a machined weapon of certain destruction. We're using a liquid key manufactured in the hope that it can unlock the cancer's grip.

Perhaps key is the wrong analogy. In fact it's more akin to diffusing a bomb. So far 10 living breathing bombs have been deactivated by the antibody's tendency to find and cut the right wire. We hope and pray that the design of Jack's bomb will mirror that of the children that have gone before.

So a defining moment but a moment, without melodrama or sudden relief because the bomb's sunder to the medicine will only be measured by the passage of time. The clock is ticking, please let the clock keep ticking......

Tuesday 29th May 2007 The past 10 days have seen yet more children taken from us by Neuroblastoma.

Friday 18th May a beautiful 4 year old girl who has fought many battles against the beast, drew her last breath and passed away in the arms of her mother and father. Penelope was well known to the society that no parent ever wishes to be part of. The majority of us never had the privilege of meeting her, but her father, John London was stalwart in his advocacy for her and was prominent in the discussion forums that many parents cling to, the forums that inform us of new clinical trials as they emerge, or in simply providing support on this huge roller coaster ride.

And yesterday, Monday 28th May, our friend Marielle Nish, another beautiful little girl, aged 8years old was taken. Having met Marielle several times, we can comment on just how bright, beautiful, polite and gentle she was. For Marielle, the disease had spread to her lungs, and it was this that finally sapped her strength. And sadly Marielle's short life has not been journalled, her family, humble yet dignified, throughout the battle asked only for prayer. There is no website that tells Marielle's story, of her pain throughout the final months. Only those privileged enough to receive the updates sent by Martin and Anita, Marielle's parents, were aware of the vicious fight she had been drawn into, of her strength and her faith, and that of her parents. Martin's final update began;

"Screen door slams, Mary's dress waves. Like a vision she dances across the porch as the radio plays.…" About 1am this morning Marielle's lungs began to give out......"

The update describes how Marielle's brothers and sisters were brought in to see her, and the deep sadness encompasses the reader.

".....And about five minutes before 10am, Marielle Jeanmae Nish was mercifully set free from the painful shackles of sin and lung disease and cancer to the freedom of holiness and health only found in the presence of her Lord Jesus Christ (and only by His sacrifice for sin)."

Leaving the hospital (finally, after almost four weeks), the radio in the taxi was playing Bruce Springsteen's "Thunder Road". Though I am not recommending that song in its entirety, it was a song whose first couple lines I used to sing to Marielle while doing a little dance. I can remember thinking about this song this morning while waiting for the Lord to take her to Himself. I remember thinking I couldn't bear to hear that song again.

"Screen door slams, Mary's dress waves. Like a vision she dances across the porch as the radio plays.…" But now it was ironically playing on the taxi's radio. However, I was strangely comforted. Marielle had not been able to have a waving dress for weeks. And she had not been able to dance at all for an even longer time. I'd like to think she is dancing now. At least she is free to do so. And she has a much better reason to."

Today Jack received the test injection. He is comfortable. Your thoughts and prayers are all we ask; for the parents of Marielle, for her brothers and her sisters. Every time in the past 6 weeks I've heard the words 'why do bad things happen to good people', I think of Martin and Anita and their children. I have never met anyone as devout, humble, gracious, loving, caring and so strong in faith as this family. And for the London family, they too need your prayers to help them through the grief, despair and loneliness of losing their beautiful child......

Sunday 27th May 2007 Don’t Sweat the Small Stuff. The frustration of seeing the 8H9 almost within our grasp, when every day is critical, then hindered by bureaucracy, threatened to bring us down, but trying to look on the bright side the weather has been beautiful, and delay meant Jack could have a few days without hospital and we could simply enjoy time with him. However even this was encumbered, as the finger sticks revealed he needed a blood transfusion on Wednesday and a Platelet transfusion on Thursday. Nevertheless on Friday….that’s exactly what we did. We walked to one of the many parks within Central Park, played in the fountains, got soaking wet and dried out over a picnic lunch.

For Jack, a weekday without hospital is a rare event. He loved every minute of his day of freedom, every minute that is until we began the walk back at 2.30pm, as his teacher Cathy attends the Ronald McDonald House for an hour of tuition. Jack contested the need, but fatigue triumphed and soon J was sound asleep in a buggy that is now way too small for him. And later that day, we received the anxiously awaited call, resumption of the protocol had been approved, and Jack would be admitted Monday morning for the test injection on Tuesday. We breathed a long sigh of relief.

A relaxed Friday evening followed with the Ronald McDonald House in a trip to Central Park for baseball, with the adults enjoying the game more than the kids. Jack has picked up the swing well and hits the ball better than his parents,... actually his mother didn’t try this year, recalling the disgrace of the year before - missing the ball half a dozen times.. the Mum’s enjoyed the warm evening on the grass and the Dad’s competed as the evening drew in and the lights began to appear one by one in the highest skyscrapers that stood above the trees. Rhian, a late comer to the game – having opted to improve her skateboarding skills alone during the early evening – was voted most improved player with some impressive batting.

Central Park is beautiful at the moment, the trees are lush with dark green leaves, the grass is thick and springy. The atmosphere, the laughter and thick luxurious light weaves a spell. It provides a temporary escape, ambling aimlessly in the evening, it is easy to become caught in the magic with the distant sound of a saxophone or bongo drums beating a soft haunting rhythm. For a while the park provides a respite from the monotony of a medical world.

Jack’s energy levels have returned in leaps and bounds, his appetite hasn’t quite responded in the same manner and he remains under 16 kilos. A light covering of down has appeared on his head, his hair is finally growing back, as are his eye lashes! It’s been such a joy to have ‘happy Jack’ back, and although we are grateful this coming week will see progression of the treatment, we remain nervously optimistic.

Tuesday 22nd May 2007 The most apt head-line for today’s events should come from the title of the body to which Sloan has sought permission for the use of 8H9 in Jack’s treatment program.

To explain, it seems that the complications which thwarted it’s use in March, have meant that approval has now to be sought to Jack to return to the Protocol he was on before the disease progressed into his bone marrow.  However we were told the authority would be sought from the Independent Review Board, based at Sloan, and would take no longer than 48 hrs to come through.  And so the week leading up to the 23rd May was spent getting Jack’s blood and Platelets up to a satisfactory level, and Monday and Tuesday involved further MRI scans which was part of protocol.

We learned on Tuesday evening, as we were waiting around expecting to be told that Jack would be admitted, that actually, the authority hadn’t been granted at all – but not to worry, the hospital would ‘call us later’.  It was later that evening we received an email, telling us that the FDA actually had to grant authority.

So there we have it, the FDA has to approve of the antibody’s use in Jack’s therapy. Nobody thought to mention it to us,  and having been told last Friday that it was the IRB authority that must be obtained, there was a reassurance as to nature of the request being something of a paper-exercise. Well we’re all ready, scans, flow studies, blood tests, transfusions – all done. Maybe $10,000 of preparatory work and we don’t yet have permission for the drugs use.

So tomorrow appears to be off and lets just say that the FDA acronym  may well be Flippin’ Delayed Again.

Tuesday 15th May 2007 Jack's overall health seems to be improving. Our last blood and platelet transfusions were on the 2nd of May and a G-shot has pleasantly unnecessary for a similar period. His energy levels have increased and he’s even had a go at flying - or rather whilst being pushed on a swing in the Park on Monday he deemed that angle of his baseball cap was not sufficiently ‘cool’. Jack chose to remedy the cap's sag at the apex of a particularly high swing. His butt parted company with the seat and for about half a second he appeared to be immune to gravity. Perhaps he was immune, but the spell broke. Jack and the ground met – tears flowed and his parents remembered a certain football incident on a newly operated head at Christmas. (Ouch).

Tuesday was a scheduled hospital visit and the livid bruise on Jack's side screamed platelets now! You can't help feeling the need to apologise and explain the bruising to the paediatric team – "no we don't torture him, honest." Platelets delivered along with antibiotic infusion – good energetic fight with Jack to rouse him from the Benadril induced nap.

MSKCC have also now been substantially more emphatic about continuing the 8H9 antibody into Jack's brain. This makes us a lot happier as we believe it is still significant not withstanding the bone marrow's vulnerability to relapse. We are minded to head for Philadelphia in order to lay the ground work such that post 8H9 Jack could be in a position to benefit from their trials. In fact appointment booked for next Thursday for bone marrows in Philly. But today we were informed the NB team are now thinking counts might be approaching a level, whereby 8H9 is viable - flow study perhaps next week, ( Tuesday and Wednesday).

I think I've used the bus analogy before, so forgive me, but it seems you wait for weeks for a therapy to come along then two arrive at the same time! Well not quite but looks like we might be seeing the resumption of progress.

Accutane. Jack has previously tolerated 5 courses of this stuff, with very little side effect. Peeling dry skin and maybe something of a moodiness arriving during course 5. I think I was a bit blase about possible effects and should have paid more heed to the 'emotional' disturbances accutane can produce. Cutting Jack's nails is a must in order to ensure that face and hands remain intact and scar free. Once or twice a day there is twenty minutes of brawling with what I nickname the 'Rabid wriggler".....and then Mr Hyde returns to Dr Jack.....al, ( hope I've got the right way round).

To be honest I can't necessarily say that it is all down to the accutane. The climate change is demonstrable but like global warming it's cause could be a mite more complicated than the single issue of accutane.

Thanks you to those making and sending the cards for fundraising, - they're a wonderful gift and your craft and skill continually amazes us. We even received some bracelets from one of the cardmakers, the work was exquisite… we’ve been putting together some swarovski and silver bracelets with J.A.C.K. beads (Joining Against Cancer in Kids).. there seems to be a demand over here for crafts.

Wednesday 9th May 2007 I have never seen the disease, which affects Jack. I have never touched the disease. I have never smelt it. But on Thursday night I divined the enemy. I was asleep and found myself in a rock built cottage; a tranquil abode but a place of fear. It seemed this place was a prison.

This was a dream but there was an immediacy about the prophecy of harm and wound to befall this place. And in the quiet I could discern my own whimpers echo. For in the still, outside, was a pall. The entity controlling this place was clever and knew the limitations of our endeavours. It was a snarling wolf of immense proportion and it slavered and tested and waited and examined, smirking......eager

I woke at 4am and recognised the wolf in the shell of Jack's curled body. It’s presence quelled but confident and so, so indifferent to the child. The wolf was real, rabid, and committed to a timeless stalking of its quarry. How could Jack's shepherds deny the wolf?

I loathed the dream but was glad of the creature, a manifestation, into which hate could be poured.

At 10.45am I found myself with Rhian and her classmates in Central Park. The class became grouped about a statue of 'Balto'. This heroic dog was instrumental in the delivery of diphtheria vaccine to Nome, Alaska. The true drama took place during winter and the town's only hope lay in a seemingly impossible sledge trip of several hundred miles to secure and deliver the medicine. The venture succeeded and bettered all estimates as to it's duration. Balto more wolf than dog innocently withstood the rigours of this test and excelled. An unknowing saviour. The children listened and as I heard the tale it became a counter punch to the earlier dream. So wolf, the devourer, heed the dog, and the dog's nature - it is your nemeses.

From fiction to fact.....to potential.

Jack's blood counts remain poor. Too poor, for now, for Sloan to continue a line of sight therapy. The doldrums had arrived and in the yawl of the therapy's stall is an opportunity for the cancers revival. So on Wednesday we had visited Children's Hospital of Philadelphia, ( CHOP). Question. What might provide impetus to the flapping sails of Jacks treatment?

The hospital's atmosphere lived up to the recommendations. Staff friendly and sincere towards Jack. Dr Maris provided explanations of four possibilities:

Proposal - to investigate what other options might be available to prevent further relapse in CNS or systemically, ( i.e. bone/bone marrow etc).

• MSKCC proposed Jack recommencing accutane ( 60 mgs am/50 mgs pm). Reasoning only form of therapy which might effect NB but not effect platelets/WBC. Accutane commenced on 27th April 2007. Visit made to Dr Maris at CHOP 2nd May 2007. Potential avenues of treatment for Jack discussed were:
  
  
• Fenretinide - phase 1 study, involving oral powder. Fenretinide may have ability to cause build-up of 'ceramide' in NB cells and cause their death.
  
• CEP - 701 - phase 1 study, chemotherapy, designed to block signals concerned in cancer cells.
  
  
• ABT -751 - phase 1 study , chemotherapy, designed to bind to tubulin and prevent cell multiplication/ promote death of cells.
  
  
• Hu14.8 - IL2 - phase II study, anticancer molecule combining part mouse antibody with substance found in humans. Designed such that immune system might learn to combat NB cells.

Questions arising from above.

Is the use of a therapeutic dose of 8H9 still possible? Should the platelet and WBC count remain poor for several weeks will the prospects of using 8H9 diminish? Does the 8H9 study preclude its use if Jack’s blood counts do not recover within a certain period?

How has the balance between risk of CNS relapse and systemic relapse shifted the emphasis of providing therapy to those areas?
Do any of the therapies support control or demise of the disease in both areas, ( CNS or systemic)?

Will any of the proposals as suggested by CHOP preclude the use of 8H9 if Jack's counts were to recover to a satisfactory level?

Timings of any CHOP proposals?

Little certainty but all maybe possible ingredients to frustrating the stalking wolf. As our ward we must find shelter for Jack - even if it is evasion not rescue.

Monday 30th April 2007 This last week of April has been one of the most anxious we have faced yet. By Wednesday, the results of the bone marrow aspirates were still unknown. Usually the aspirates come back fairly quickly – within hours – but the marrow takes about a week to return. The closer Friday came, the more agitated I became. By Friday morning I was a bundle of nerves. Jack had gone to school in the morning, had blood tests conducted, received a platelet transfusion, and still we waited uneasily to speak to the doctors. Marrow results never took this long – what was wrong!

At 12noon we were called in… and a physical examination of Jack began.. until, unable to bear it any longer, I felt it necessary to intrude saying ‘and the bone marrows….?’ There was a frantic search of the computer, a quick discussion between consultants and the conclusion was … All Aspirates Clear, all Marrows Clear. And we breathed a long, long sigh of relief.

We no longer had to consider travelling to Vermont, which would have been our next step had the disease proved resistant to the high-dose chemotherapy – that had been a huge concern. Vermont are running a clinical trial involving Nifurtimox, which has been shown to make cancer cells more sensitive to chemotherapy.

This week, Jack’s blood counts remained low, and we discovered on Monday, that our consultants did not feel able to proceed with the 8H9 injection until the blood counts had acquired some sort of normality. But for Jack, (having been very heavily treated in the past) this could take months, certainly weeks. This was a reasonable, if somewhat disappointing decision, as the 8H9 will have a detrimental effect on blood counts, and so the counts should be reasonably high prior to initiation of the 8H9.

The big question for us was what would happen in the meantime. Jack’s disease had progressed while on chemotherapy – what could they now do to keep it from returning again, until we could proceed with the 8H9. The only thing Sloan Kettering could offer was Accutane (Vitamin A). And so prescriptions were issued – we were shocked at the cost of Vitamin A here, approximately £1,000 for a dose that would cost a few pounds at home. Accutane is believed to interrupt the signals that cancer cells need to thrive. It penetrates the nucleus of the neuroblastoma cell, where the DNA is located, and turns off the N-MYC, the oncogene responsible for the tumor cell growth. Once the cells stop growing, the tumor cell ‘differentiates’. This means it matures into a benign ganglion or neuronal cell. Throwing switches on the genes that push the cells to differentiate can be effective therapy since the cell is supposed to have differentiated in the first place. Unfortunately, it doesn't always work in such a neat manner. Jack relapsed in November while he was on Accutane.

Unhappy with keeping him solely on Accutane for the next few weeks, we looked at some of the US NANT trials. We discovered Childrens Hospital of Philadelphia (CHOP) are running two interesting trials that might prove more effective for Jack, than Accutane did. One of these is trials is on Fenretinide. This molecule is closely related to Accutane. It is an anti-cancer agent that can cause the build up of a wax like substance in Neuroblastoma cells, called ‘ceramide’. In laboratory studies it was found if too much ceramide builds up in Neuroblastoma cells, they die.

The other otption is something called CEP-701. CEP-701 can block the signals that help NB cancer cells thrive. The signals are taken into the cell through proteins found on the surface of most NB cells. Both options are easily undertaken, in tablet form taken orally with little side effects. However our problem could be Jack’s blood counts, and for CEP -701 he would have to have normal liver function. We have no idea what effect this latest bout of high dose chemotherapy has had on his liver. The question did arise prior to Jack commencing the chemo, but there was no alternative, so the answer was to some extent, irrelevant.

We have an appointment with Dr. Maris at CHOP on Wednesday 2nd May. Our doctors at Sloan have been more than helpful preparing reports and scans prior to the appointment. And today, Monday, Jack is back at Sloan after a hectic weekend of swimming – and will have further platelet/blood transfusions. His GCSF injections are now every 3 days, and the Platelet transfusions are being held off for as long as possible in an attempt to boost his blood counts to begin functioning themselves again without support of transfusions or Gcsf. Jack is noticeably sleeping less and less each day, eating more and more. Tiredness has had no effect on his mental negotiating skills. He spent a few hours of patient discussion trying to get the 50 cents he required for a small plastic ‘egg’ containing a worthless toy in a vending machine. The word no appeared to have little meaning – no because he’d been given a much sought after ‘knight’s set’ the day before. Two hours after debate began, he asked quietly, ‘can I have the big coin’. (Change from the lunch bill). Happier that he was having a coin to go in his piggy bank, and realizing this would end the discussion, I handed him the quarter. Within seconds he had returned with the plastic egg… he had somehow acquired another quarter from somewhere else and he was not taking ‘No’ for an answer…. I had no idea he knew the value of the US coins, he has little opportunity to use them, but his sheer determination meant he kept the egg…. For now!

Sunday 15th April 2007 Last week saw Jack's release from 925a, (hooray), and this time it was sprung on us. One minute we were contemplating a mid-week release then, without a so much as 'by your leave', off you go. Strange but sometimes you like to savour the prospect of freedom; but we didn’t hang around long enough to give them time to change their mind.

Connor had come down with a virus sweeping through the Ronald McDonald House over the Easter Weekend, but by Monday he was back at school and appeared to be over the worst of it... but on Jack’s return to the House on Monday evening, Connors cough included blood and sounded awful. Despite masks and much distance, by 4am, Jack too had begun coughing.

Tuesday we were back by appointment at out-patients, and a day of blood, platelets and antibiotics ensued. This was followed by sickness, temperatures and the possibility of a return to ....925a. A healthy debate concluded with Jack returning to R McD House, - at least until 2am - when his temperatures spiked through 39 C.

A really great little guy remained silent so as not to waken Connor and Rhian, as he was lifted out of bed. Without complaint he dressed and hopped into the pushchair and we scuttled down York Avenue in the direction of Sloan. It was a beautiful night, still and clear. The next few hours consisted of more antibiotics in Urgent Care. In fact Jack has had so many antibiotics that bacteria in the room next to him are dying. By 6am York Avenue wasn't quite so beautiful as we trudged back to 73rd street.

Wednesday, Jack's temperatures remained high but his system was still supercharged with antibiotics. Jack’s Grandad arrived for a short visit.

Thursday, another platelet transfusion, then nasal swabs taken in order to culture. Our doctors were keen to admit Jack, but we were 99% sure this was a virus, and not an infection. So although we were reluctantly allowed back to the RmcD house, we are now banned from the paediatric department until next Wednesday. Should the cultures remain negative we can then return. In meantime, we will attend Urgent Care and be treated in an isolated unit until we can return to Paediatrics.

Friday, more platelets in urgent care – an all day affair- despite a fantastic nurse who tried to expedite our departure and failed. Why? Jack's medi-port stopped working. Even when re-accessed the line refused to draw back blood. The line flushed? Who knows? Simply praying, that Jack's not going to have to undertake another procedure, which is ancillary to the main purpose.

Saturday and Sunday it was great to have two semi-normal days with Grandad. The weather forecasts and the news reported terrible storms on Sunday, so much so that Mayor Bloomberg gave a press release on the news assuring everyone that the emergency services were all on standby and New York was prepared! And the storm? Well it rained – and it rained and it rained, without cessation – and even on Sunday night the sky was lit with blue lightning. Just another day in Ireland! But this wasn’t Ireland – and we’re told the rain has broken a 102 year old record – 7 inches fell in Central Park and had it been snow, it would have been 6ft of snow – so New York escaped the snow this year, and it rained a bit!

Jack's only trepidations have been the daily injection of GCSF and a cab driver's attitude.

We've been in NYC for over four months and during that time the taxi drivers have proved helpfully flexible in their abilities to accommodate the Browns. It appears they are empowered with discretion when one of the fare has large eyes. Eyes, which wholly contradict the even larger scar etched above them. But today for some reason the man in the yellow shark said no. Perhaps it was the presence of Grandfather Brown's menacing short back and sides; or the huddled kids flinching beneath the torrential downpour; maybe the proposed destination 54 th Street – a cinema – to 'meet the Robinsons'. Who Knows?

And today, Monday, we were back in Urgent Care for both Platelet transnfusion, blood transfusion, and involved the weekly Port accessing procedure (yet another needle). I love the use of the word urgent. Someone must realise that the inclusion of urgent in any medical title lends itself to becoming a red rag to the rise of the frustrated patient's bull. Omit 'Urgent, use 'Diligent But Uncertain' then no one's under any illusions.

The week ahead involves further scans, MRI, MIBG on Thursday with the injection on Wednesday, and further bone marrow biopsies on Friday morning. This for us, sparks another week of apprehension, until the results of the marrow biopsies are known on Friday week. Then we will discover whether the High Dose chemotherapy and the stem cell transplant has been sufficient to rid this little body once again, of this malevolent opponent.

Sunday 18th March 2007 It was two years to the day yesterday, since Jack was first diagnosed with neuroblastoma. The statistics recorded in the UK would indicate that most children suffering from this disease die within two years of diagnosis. That has not been our experience, albeit the majority of children we know are located in the US and not in the UK.

Last week was not one of our better weeks. Richard returned in the very early hours of Thursday morning, having only been able to obtain a visa for himself. The law only allows for a Visa to be granted while the individual is outside the US. There are no exceptions. Therefore each of us will have to follow in Richards footsteps.

It was while he had been away that we had received news that the injection would proceed. The hospital had allowed for Jack to be admitted ‘by appointment’ on Wednesday night, in order to facilitate the childcare difficulties, and the injection could go ahead on Thursday.

I was surprised to receive a phone call from the hospital late Tuesday evening, asking me to bring Jack in for bone marrow biopsies first thing in the morning. I questioned the urgency, as Jack had been scheduled for this at the end of the month. However I was assured that a slot had become available, and it was merely being brought forward for the sake of convenience.

And so Wednesday morning saw the three children and I at hospital for 8am. Jack’s medaport had to be accessed, (cleansed and needle inserted and taped on) and pre-meds had to be given. The children had breakfast at hospital before crossing the road to their school. Things went unusually smoothly. Even the dreaded ‘white milk’ general anesthetic didn’t seem as bad. And within the hour, Jack was carried out to me in the waiting room, fast asleep and still sucking his thumb. This too was unusual, normally I would be brought into the recovery room and we would leave when he was awake. But it was nice to have time to sit and just cuddle on a soft seat in the busy waiting room on the 9th floor. All too soon Jack was awake, and hungry. The steroids and the appetite enhancer were working pretty well on his appetite. After breakfast, he had a blood test, which showed his platelets were higher than we expected at 67. They needed to be above 50 in order to proceed with Thursday’s injection, so he would have a transfusion to save any delay after admission. He was sore from the biopsies, but still insisted on playing on the playroom game cube prior to the platelets arriving.

Just before lunchtime we left hospital with everything completed, to get ready for admission in the evening. It was as I packed his overnight bag late in the afternoon, the hospital called me and asked to attend room 7. I knew immediately something was wrong. I walked the few blocks to the hospital, having left Jack with his teacher at the Ronald McDonald House. I walked straight past reception to room 7, where the door was closed. This only confirmed my fears. The receptionist rang room 7, Dr. Kramer was talking to Jack’s nurse practitioner. She directed me in, by which time Dr. Kramer had left the room… The nurse practitioner confirmed what I’d guessed, there was something wrong with the biopsies.

It could only have been 20 minutes before Dr. Kramer returned, but it felt like hours. Bone Marrow is soft tissue found inside some of the larger bones in the body. The marrow produces platelets and red and white blood cells. A biopsy is a method of removing a small tissue sample usually from the hip bone by inserting a needle into the bone.

Bone marrow is soft tissue found inside some of the larger bones in the body. The marrow produces platelets and red and white blood cells. A biopsy is a method of removing a small tissue sample usually from the hip bone by inserting a needle into the bone.

Bone marrow aspirates are also performed, usually before the biopsy is taken. the aspirate needle is inserted into the bone, and a syringe is used to withdraw the liquid bone marrow.

In the UK, only two areas are subject to a biopsy. At Sloan Kettering four areas are tested; two anterior and two posterior.

Dr Kramer could only talk about the findings in the bone marrow aspirates. It would take approximately one week for the actual bone samples to be analysed.

The aspirates had been tested on 40 slides (10 slides of liquid bone marrow from each of the 4 points subject to biopsy). Suspicious cells were found by the lab, on two of the ten slides from the one site.. the Right Posterior. Another team had been assigned to examine the cells further as they had not yet been confirmed neuroblastoma cells, but they were referred to a ‘cluster’, and the neuroblastoma team were 99% sure that the disease had been detected.

The fact that the small cluster has appeared on only one site, and on only two slides from that one site, indicated it had been caught in the earliest possible stage. However the injection to Jack’s head would not proceed as it would prevent any further treatment for one month. These cells could not be allowed to develop over the month. Admission was cancelled and scans were arranged. CT of the head, followed by CT of the chest and abdomen and Mibg injection followed by the scan over the weekend. Chemotherapy was already lined up for Monday. This would consist of the Irinotecan and Temozolomide, which he’d had before (capable of penetrating the brain), but there would be Carboplatin too, a much harsher drug and one that would without a doubt, attack Jack’s already low platelet count. There will be no question now over whether or not Jack will receive the stem cell transplant, that will follow chemotherapy, on Monday 26th March.

Although we are always reluctant to talk about the scans in advance, reluctant to get our hopes up and only to have them dashed, as has happened so many times after Jack’s initial diagnosis, we both left the two hour scan thinking… ’it looked OK’. There were no obvious large areas ‘lighting up’, and I pray that this is something that is confirmed by our doctors tomorrow. Having spent the last few days in denial, hoping the lab technicians were wrong, or that they’d mixed the slides up with someone else’s, reality has now set in. Jack’s lethargy and loss of appetite over the past few weeks speak louder than wishing for the impossible.

The scan results should be available tomorrow. Faith and Hope remain our beacons.

Monday 12th March 2007 Monday morning saw Richard off to Ottawa in an attempt at resolving the visa problem. The cost of flights was huge – by far the cheapest option was catching the bus, a 12 hour journey but through spectacular scenery, I have no doubt. And off he went after dropping the children at school. We expect him to return Wednesday night. Having had a platelet transfusion yesterday, and being passed a message from the ‘on call’ doctor that we didn’t need to attend hospital on Monday, as a full blood count could be taken on Tuesday, we were in no hurry. However Jack was keen to attend the hospital school, and I was impatient to establish what ‘plan’ had been decided. We’d been told to make an appointment with Dr. Souweidane of the Neurology team, conversely the hospital receptionist confirmed he was off this week. A few hours later and a member of the Neruoblastoma team received confirmation from Dr. Kramer that we would go ahead with the injection this week. Apparently Dr. Souweidane had looked at the CAT scan, and has said there was no reason why the injection should not proceed.

Unsurprisingly, another blood test was ordered and as anticipated Jack’s platelets came back pretty strong at 110. His haemoglobin is holding out well. So tomorrow, Tuesday, will see us back for further blood tests, Wednesday morning, the same, then Jack will be admitted on Wednesday afternoon to the Inpatient section. There will be no further test injection. The largest dose of radioactive fluids ever intended in this study, will proceed on Thursday. The hiccup of last week has not eased our fears in anyway, if anything it has had the adverse effect. Faith however, remains steadfastly in our minds. And tonight Connor returned from the RmcD playroom with a calendar page he’d made for June, the month Rhian and I were born. He’d placed a sticker at the top which read ‘Fight the good fight of faith’. 1 Tim 6:12. Adjacent, he’d placed one other sticker…”those who hope… will renew their strength. They will soar on wings like eagles”. Isa 40:31.

We’ve had contact from other families in the UK who like us face the terror of this disease snatching the most precious thing it possibly could, their child. Like us, most parents would happily leave this world tomorrow if they thought their child would survive. For most, it is a waiting game, waiting and watching to see who will relapse next. And then what? We live on Faith and Hope. Without that we have nothing. Be it faith in God, working through our doctors, faith in the medicine, in the children that have gone before us one thing is certain, the only hope of finding a cure for this disease lies in international co-operation.

Friday 9th March 2007 I had to seriously wonder about Jack’s ‘magic bubble’, the same one that told his father an angel had ‘emailed’ us about. The CAT scan went ahead on Thursday evening. The morning of the 9th brought the neurosurgeon around to confirm that there was nothing significant with the Omaya reservoir, or its position. GOOD NEWS at last. But, he wanted to drain the fluids, which had collected around the site of the surgery. So a needle was inserted and about 52 mls of fluid sucked out of Jack’s head, and into a syringe. And then we waited again....

By mid afternoon it was all off. It was felt that to proceed when the cause of the fluid build-up was uncertain may be unwise. Unwise in that the antibodies with their radioactive attachment might be introduced into an environment were the cerebral fluid could leak outside of the brain. So we were discharged with instructions to bring Jack back on Sunday for further blood tests and to make an appointment with Dr. Souweidanes neurology team on Monday. to discuss further with the neurosurgeons the fluid's cause and possible remedies. Re-group Monday, but merely to plan.

The weather has turned warmer, (50s), and we hoped to have take the children to Colney Island on Sunday. A change of scene - the beach. Unfortunately, Jack was required to attend urgent care for a blood test, which showed his platelets were low, and he needed a transfusion - 10am to 3:15pm.

When we were eventually released, we made our way to Central Park. The ice was beginning to melt in the reservoir and the bright blue skies, sunshine and sudden re-appearance of throngs in the park, combined with the clocks moving backward, made us feel Spring had finally arrived. Jack finally got his long awaited ice-pop and the children sat by the yachting pond, chattering in the late afternoon sunshine .

We are hoping next week will see the solution of last week's difficulties.

Friday 9th March 2007

Groundhog Day:
Today, 8th March, was supposed to be the significant day. The ingredient, which could determine Jack's future, was due to be injected at 3:30pm. I will not dwell on preceding events, other than to place context upon today.

The relapse; the flight; the diagnostic tests; the seizures during the wait for surgery; the chemotherapy; the radiotherapy; the pneumonia; the chemotherapy; the re-positioning of Jack's Ommaya; the test doses and all to reach today when the killer deal would spread within his cerebral fluid and destroy those remaining sparks of death. The sparks, which would surely reignite and end this story.

But today was like so many in a cancer sufferer's life. Today was a bad draw and the launch was aborted. At 3:30pm there was a problem with the antibodies quality control. Yvonne's response challenged the prospects of a 24hr delay and at 4:30pm a crowd grew. Our nurse; the nurse practitioners who would administer the dose, doctors and a man to monitor and supervise the drug's radiation. There were others and Jack's agitation grew.

The bite point for Jack was the cleaning of his head with iodine. Jack's brewing tension burst and brought outcries for the food he had been denied much of the day. Solace from his mum's arms – fear – protest for food. The metronome of reaction to his stress. And then the needle.

But the needle couldn't find the ommaya's cusp and everyone stepped back.

An hour later a doctor from neurosurgery determined the ommaya's site but was cautious about its foundation and, and, and…… it wasn't happening.

So the boy got his wish for food and we put our wish back in its box.

A CAT scan has been performed and no doubt in the morning we will discover whether the ommaya is fit for purpose.

A day like many others - we are cocooned by the immediacy of medical attention and led by the pied piper's plan. Despite the frustrations and funereal pace of progress we have the comfort of being in a play whose setting and plot are familiar. We are not alone and have every expectation of a shining knight rescuing the prince.

Perhaps the real worry will come after this next episode when our trump card is played and we wait for the cancer's hand to become clear. Groundhog Days have one redeeming feature - there is a next day, a chance to re-run.

Thursday 8th March 2007 This was it. The day had arrived when Jack would receive what we had arrived here for. The treatment that might dispose of this disease from his brain, once and for all.
Jack woke up much later than usual at 9am, complaining with hunger. I had already ordered his usual from the menu… pancakes. And for the first time ever, he ate both huge pancakes. The appetite enhancer was certainly working.

Eight medicines later, no lunch, and at 1.30 we prepared for the injection… but Jack’s blood counts had shown his ANC (Neutrophils were low, they needed to be above 1 to combat the risk of infection). He was given a shot of Gcsf. Two hours later a further blood test showed the boost had had minimal effect. Another shot was required. The shots involved injections to his leg, something Jack has still not grown accustomed to. He left no one in any doubt as to how hungry he was. But food was not an option until a few hours after the injection which was likely to make him sick. A further hour went by and the bloods came back at a sufficient level. Then we were informed that the radioactive solution had not been submitted for the mornings safety testing and authorisation. Jack was irritated, hunger pangs were clawing his tummy, but an hour later the doctors returned ready to proceed. And so at 4.45pm we were ready to go. However the Paediatric Nurse was unable to locate the reservoir. Our consultant then tried and she too had problems locating it. The neurology team were called. They located the reservoir under Jack’s scalp but they were concerned with the amount of movement. Jack had been given a cocktail of painkillers preceding the event and was groggy, but groggy did not take away his need for food. He was irritated by the antiseptic that had been rubbed over and over on his scalp, by the constant prodding on his swollen head, by the needle used in an aborted attempt to access the reservoir – and by his hunger pangs. And finally at 5.30 pm, the Neurologist, now aware of exactly what was being injected into Jack’s head, called a stop to proceedings. A CAT scan was arranged. The position of the reservoir would have to be established before this lethal substance could be injected. If it had become loose or dislodged yet again, then the risk of these fluids escaping to other areas of the head and body could have a catastrophic result. Jack was visibly relieved at his narrow escape. Today there would be no further needles in his head. And he could finally eat. He was happy. For now.

Should the CAT scan show the reservoir remains in place and secure, the injection will proceed tomorrow, Friday.

Wednesday 7th March 2007 It’s been a busy week. Monday saw us back at Sloan, and the now mandatory blood test. Jack’s tiredness and complete loss of appetite and continued throughout the weekend. He’d been having occasional leg pain, again something that bothered me, the combination were the symptoms that had brought him eventually to diagnosis.

We were seen by the paediatric nurse. Jack was again tired, and unimpressed by being torn away from a playroom X Box game (something he seems to have latched onto pretty quickly at Sloan’s Playroom). I pointed out again, the tiredness, the lack of appetite, the pain in the legs. Jack had gone from 17 kilos down to 15.7 in two weeks. I was asked did I want to see a doctor, Yes I did. I was led to the consultation room a little later feeling like a naughty school girl. Dr. Kushner eventually swivelled round in his chair away from the computer screen in the corner, and yet again it was pointed out to me that the tiredness was probably due to radiation. Probably. That was a word I was used to. But it was also something I wanted to be assured of. Loss of appetite could be resolved by a drug – Megasace. (Jack was already on steroids, he was supposed to be hungry without an appetite enhancer. And yes, the leg pains.. well he was about due 3 month biopsies and Mibg scan. Dates would be allocated. However routine height chart showed Jack may have had a growing spurt, he’d grown 1cm since December… and for now, getting through the ‘big injection’ on Thursday was enough to focus on.

Wednesday lunchtime saw Jack admitted to the 9th floor inpatient dept. We drove straight from the BBC studios, Jack with a large sandwich clasped in his hands. It was good to see him eating again. Another blood test, but we had been pleasantly surprised that for the first time in weeks, his counts had risen by themselves. However although higher than Tuesdays counts, they had to be a certain level before his injection tomorrow and so a Platelet and blood transfusion in the outpatients department were necessary before crossing over. Jack slept soundly – the appetite enhancers had set in, and by the time we were finally allocated a bed, he could think of nothing else but food which finally arrived at 9pm. He then slept soundly through the night. Our neighbours had apologetically warned us that Liam, their 2 ½ yr old son was having a lot of pain and would probably cry throughout the night. Liam cried from a sore bottom, as anticipated, but I listened in sad reminiscence, it took me back to two years ago, when Jack was undergoing chemotherapy that had caused diarrohea, that had caused open sores on his bottom. And that age, unable to communicate their feelings, these children were undergoing a cocktail of drugs that an adult body could not withstand. For Jack’s sake I was glad that that cocktail would never again be an option. For better or worse, his body would not survive that devastation again.

Thursday 1st March 2007 Richard’s Update seemed to capture everything that we have felt, that we feel, about this treatment, our concerns, our faith or rather our need for faith. There seemed little need to fill in the last week, which has been particularly busy. But many of you have been asking ‘how did it go’.

The ‘injection’ of 1st March was a test dose – a much lower dose (over 2/3rds lower) than the dose earmarked for Jack. Despite swelling around the area where the reservoir had been re-inserted, the injection went smoothly. The reservoir was obvious immediately (although covered by skin and stitches), the needle inserted, one sharp yell from Jack, and it was in. Accessed! From here on in, the timed withdrawals would be conducted by syringes attaching to the needle…. No more insertions necessary. Jack was uncomfortable with what was happening above his eye level. A 15 minute draw on the fluids, a 30 minute draw, a 1 hour draw and so on and so forth, during the night. The morning after, a scan had been planned for 1pm. Jack was officially discharged just before… before receiving the news that another patient had taken his place and we’d have to wait 45 minutes… he was desperate to get home, despite having much fun with ‘slime night’ the evening before. And so 45 mins later we left in-patients and attended Nuclear Medicine as directed…. Only to be told of another delay. But we sat through it, and eventually, we were finally released. Only 2 nights but we were all glad to be back together.

Saturday morning saw Jack and I back at Urgent Care (not for any problems) – a further sample was required from the reservoir, and Jack’s Platelets would be low… he would probably need a Platelet transfusion. A few hours went by, but we were happy that his Platelets seemed to be holding out. A transfusion wouldn’t be happening, and we could have the rest of the afternoon to ourselves. It was beautiful outside – bright, sunny and WARM.

Wednesday 29th Feb 2007 Monday saw Jack back at hospital for a finger prick blood test and another blood transfusion. After a further consultation, we were told the Stem Cells would be transplanted, simply because Jack’s counts were not recovering now, and there was much less likelihood of recovery following the 131I liquid in the antibodies.

We were glad to hear that we would have Tuesday off, and Tuesday 28th saw Jack having a lie-in for once. This was interrupted by the phone ringing and the hospital telling us to ‘bring Jack in’ – they wanted another blood count. The blood test showed his Platelets were low, but it was decided to give a transfusion on Wednesday instead. Jack has been unusually tired again, something that concerns us both, the tiredness doesn’t appear to stem from low blood counts. Then followed a further change to the plan again - following a team meeting on Tuesday afternoon, it was decided to transplant the stem cells after the antibody injections, in order to give them time to ‘graft’. It’s this ‘graft’ that scares me. Along with the good that will graft, any contaminated cells will also graft.

Wednesday morning, Jack back bright and early for the Platelet transfusion, hopeful of getting away early as the Platelets should have been ordered the night before. Not So. The Platelets finally arrived at lunchtime - when we were also told Jack would be admitted, - usual bureaucracy – in order to ensure he had a bed for Thursday, when the test dose of antibodies would be administered. To those unfamiliar with hospitals, this sounds absurd, but we’ve grown used to it both here and in the UK.. It vexes me particularly, as it’s such a waste of valuable time, but it bites even harder when it’s being paid for ‘out of pocket’. However where an operating theatre can be booked, a bed cannot. The only way of assuring one is available, and assuring timely treatment, is by being in it.

40 minutes later, Platelets transfused, and we wait, and wait, and wait. We waited until 7.30pm for a bed to finally become available. Jack slept for four hours during the Platelet transfusion and the subsequent wait. His appetite remains poor. His tiredness has been put down to the radiation treatment, I’m told cranial spinal radiation has this effect 6 weeks after treatment. That however, never stops a mother fears. It has taken this mother a long time to accept her child has ‘cancer’.

Despite sleeping 4 hours during the day, Jack had no problem falling asleep again at 10pm. Despite machines bleeping, a neighbouring mother making her mobile phone company very happy – all through the night. This tiredness concerns me.

Thursday 1st March 2007 The stem cells… Yes… No… Maybe later…

Poker would be a lot more fun......

Yesterday, a rather serious and earnest doctor spoke of the poor state of Jack's blood counts and that to go ahead with the hot antibodies at this stage would imperil his survival. I followed.....I understood

Later, Yvonne and I basically thought, "well we've given it our best shot to avoid the stem cells - it's not worked but we can understand and go along with the decision making process".

Today, Jack and I arrive at floor 9 to begin the preliminaries for his stem cell infusion... infusion turned into confusion

We were summoned to see the same doctor, same earnest delivery,  standby, standy all change...... "Following a team meeting yesterday afternoon..... antibodies would commence 1st March....... stem cell rescue will not take place".

Stem cell rescue would be attempted two weeks after therapeutic dose of the hot antibodies. 

So, as I write, Jack is being admitted later today for the antibodies tomorrow. We are uneasy about the dose - very high - but this is a phase one trial and if we want Jack to have the treatment then we have to remain confident in the process and remember the prognosis without his involvement. These comments are not a critique of the day, its discussions or its outcome, just an indication of the second guessing; educated, reasoned, experience-based and logical as it is but guessing nevertheless. And we are part of that guess-work. Placing someone you love more than can possibly be expressed into an environment designed to destroy and hoping that the essense of who you love will overcome the disease and survive the cure. There are many who have walked in Jack's shoes and many who walk his same road, same day, everyday. Just keep walking; just keep going and know your struggles are never in vain and and always a victory. 

You have to have faith. Faith in the children that have gone before; faith in professional competence; faith in compassion and faith in Jack. For a few minutes, it took a nurse who saw my worry and fear to rekindle and fan that flame of faith. Thank you.

Jack is tired; out of all the children, you could guarantee Jack would always rise before Rhian. But not yesterday or today. And today while waiting for admission Jack required both blood and platelets.

But later, clutching Ellie and newly arrived Ellie 2, ( thanks Jellycats), Jack's chagrin reappeared. Spaghetti and sauce were order Jack B. I hope you ate it; 16.4 kgs of supernova make it 16.5. 

Monday 26th February 2007 - Extension granted!

The sour commentary involving events of the 22nd February were usurped by the ‘can do’ attitude of many who came to our aid on the 23rd.

The morning of the 23rd saw the Browns packing rucksacks for a fleeting visit to Canada in order to, perhaps, secure another 90 days via a ‘new visa waiver’. We were reticent to put Jack on an airplane, (we were reluctant for him to make any significant journey), while he still has a build up of fluid inside his head and around the site of the two surgeries.

We finally decided to board a 1:45pm Amtrak train to Niagara, N.Y. a trip of just over nine hours. We would then have to catch a shuttle across to the Ontario side, as there was no direct train on Friday.  One night in Niagara and return to NYC – hopefully - with the additional 90 days stamped into all our passports.

However, our account of 22nd became a catalyst for some remarkable assistance both in the UK and here in New York.

• Colleagues in London came up with a plan and instigated an enquiry with the US embassy in London

• 2Simple got the advice of an immigration lawyer who counselled against the above and felt that there was another way around the immigration service’s intransigence.

So, at about 11am, we unpacked the bags, (top tip - never oversell an idea to the kids as when we stood down and explained we were not going on a wonderful adventure to Canada and would not see Niagara Falls there were pretty glum faces in room 707).

Then we heard from local law-enforcement guys, (you know who you are), who said, “Meet in an hour at Federal Plaza, we can help”. And sure enough a couple of hours later our passports were legally authorized for another 30 days.

Now 30 days is insufficient for our needs but it hopefully provides us with enough time to resolve the visa issue. We also want to say that we do not wish to act or remain in the USA as anything but bone-fide ‘guests’. We are extremely grateful for the help and support of New York and New Yorkers. It appears that we would be eligible for a visa extension if we had a visa - it is merely the absence of a visa in the first instance, which has created this problem.  But we dashed from Gt. Ormond St upon Jack’s diagnosis, straight to the airport, without time to say goodbye to Connor and Rhian, let alone obtain a visa.

To everyone that helped; who are still helping and to everyone we met, we are deeply grateful.  Apart from the expense, the upheaval and the worry about Jack, something else happened  to cause us huge relief we hadn’t travelled. Jack had been given appointments for MRI scans next Thursday and Friday (1st and 2nd March); however in hospital, we’d just been told Jack would be starting the antibodies on Thursday 1st.  We reminded them of the scans, and were told these had to be conducted before – someone would be in touch with new dates.

On Friday afternoon - when we would have been on train from New York en route to Canada - the hospital phoned and told us Jack would have to have the scans over the weekend. 7am Saturday morning; 9am Sunday morning! The scans were essential and there were no slots available at all during the week.  This weekend our only option.

6:30am Saturday saw Jack, without complaint, wrapped against the elements as a  sleepy father wheeled him along York Avenue. (Why is the wind always blowing against you when walking in NYC?) First question in the MRI suite was, “Could Jack do both brain and spine sessions today?” The carrot being he would not have to attend on Sunday, the stick being 1hour 15 minutes of lying in perfectly still repose amidst the MRI noise.

Jack was, if not game, then persuaded. I don’t know how he achieved it but the little frog actually managed to fall asleep for about 20 minutes while in the machine. Dad dozed for about 10 mins. I think we’re just getting used to the noise, which for those who don’t know, is akin to a sound system being operated by a DJ who has no sense of rhythm; no understanding of volume and a fascination in using the same four or five electronic sounds in a random montage. The sounds would, ordinarily, be the perfect tool in a sleep deprivation exercise.

Anyway job done and we are now looking apprehensively to Thursday and the first round of the hot antibodies.  In meantime, undoubtedly the next few days will consist of yet more blood and platelet transfusions.

Bureaucracy should be the servant of the people and not reduce people to servants, with no control over their lives.

When Jack was being treated in 2006 his, and our, stay in the U.S.A was limited to several weeks at a time. The USA operates a policy whereby UK passport holders may enter the country for 90 days without a visa under the provisions of a visa waiver scheme. And that’s how we came and went – no problem. Then in November when Jack relapsed we knew we had to get to NYC immediately, or potentially lose Jack.

So again we travelled but in recent weeks we realised that our 90 days was coming to an end.

MSKCC provided us with a letter with which to furnish the Immigration Services. The letter accounted, (in all senses of the word), for our position. I made an appointment and today attended the Service’s offices.

26, Federal Plaza, NYC. Immigration services.

Standard security procedures, then to the 3rd floor where a man beckons you toward him. A brief exchange invites a response that the ‘visa waiver’ cannot be extended under any circumstances. I mention Jack’s cancer and it seems to convince him to allow me access to the ‘next level’. Room 310; ticket B155.

But the man’s tone was certain and its character began the day’s trend. I think access was only granted because, and in spite, of his certainty that it was easier to allow another to dismiss my request.

I sat in a large and tidy room watching and listening to ticket numbers, booth numbers and after an hour and a half approached booth 42.

“Hello I am here because….visa waiver…….my son has cancer……here is a letter from the hospital, (placed on counter, and refused to be looked at)……. We do not wish to be here ‘illegally’……..can you help……..”

………..” No”……..

Why?

If you had a visa, we could extend it

But we came here under the visa waiver scheme because we HAD to travel at that moment.

No…..we do not extend visa waiver under any circumstances. You need a Visa.

Do WE have to travel to the UK to obtain a Visa?

Yes

But my son is having treatment for the cancer here, he’s five. Can you…..

No

Can you...

No

Could you give me a letter to say I have been here today trying to get a….

NO.

So I left and thought solace might be sought at the British Consulate…..

I will keep this brief. Nice man, we chat and he tells me I need a Visa.

Can the consulate help?

NO.

I mention that two other families from commonwealth countries have had excellent assistance from their consulates and were treated as families ‘in distress’.

1.10pm.  A lady who deals with ‘distressed families’, at lunch. She will be back at about 2:00pm. (I notice sign which says counter closed between 1pm and 3pm but take indication as helpful).

2.36pm Excuse me I wonder if the lady is available.

2.37pm Someone goes and asks her. She says her hours are from 3pm onwards, sorry…

3.04pm Lady appears.

Circumstances explained again.

NO, we can’t help….get home or get to Canada. If you go to Canada you can get another 90 days and you maybe able to get a Visa from the US embassy there.

But, he’s in treatment, he’s five, he’s …..he’s……he’s

And to quote Little Britain for the purposes of illustrating the day.

Computer says NO!

In the inside cover of your passport it says this;

“Her Britannic Majesty’s Secretary of State requests and requires in the Name of Her Majesty all those whom it may concern to allow the bearer to pass freely without let or hindrance and to afford the bearer such assistance and protection as necessary.”

What do you think, Jack?

We had been invited to Long Island by a lady called Lisa. We hadn’t actually met yet, but we’d spoken on the phone occasionally, - she was organising a fundraising day for Jack at her home on St. Patrick’s day, where green beer would be flowing. And so on Saturday morning the children were (for once) speechless, when a big stretch limousine pulled up outside the RmcD house and the driver opened the door for them. Once inside, the excited chatter of 3 children kept us entertained as we drove off East, across the bridge. The view back over the river to the Manhattan skyline was breathtaking; it seemed much different than the glimpses from the crowded ‘super shuttle’ we would catch occasionally from the airport. The bright sunshine on a clear but cold day starkly projected the skyscrapers and reflections bounced from mirrored glass.

It took us 1 ½ hours to reach Lisa’s home, and as we got nearer, the snow deepened and the cold grew more intense. Lisa has a 3 year old son called Mark, and her niece Jessica, the same age as Rhian, was also staying the weekend. Despite a huge house, with a basement playroom just as big, laughing, shouting and piercing shrieks filled the house for the whole weekend.

On Saturday evening, Jack’s head noticeably started to fill with fluid again, and by Monday morning, his forehead was once again podgy, although confined more to the left side this time.

Monday morning saw us back at Sloan, while Connor and Rhian (who had begun half term break), were invited to attend art school. Our consultants were not unduly concerned about the swelling in Jack’s head, it was something that would have to be monitored, if it increased any more, a shunt would be fitted, this would drain the fluids, but on the other hand, it would also allow some of the antibody liquid to drain out, when it is finally administered. Monday saw yet another platelet transfusion. We had anticipated as Jack had begun getting very tired again and putting himself to bed at 8pm. Tuesday brought another blood transfusion. By Wednesday Jack’s platelets had dropped again to 28. He needed another transfusion however Dr. Kramer decided to postpone until Thursday, to establish what his counts would be a day later – whether they would drop to a certain level but then hold, if they sustained we may still escape the stem cell transplant. Today, the finger stick test revealed his platelets had dropped again, and quite significantly. They were down to 17. The bleeding from his finger sticks were lasting much longer, as shortage of platelets meant the blood wouldn’t clot - and when the plaster had been pulled from his finger during play yesterday, it took us a while to work out where the blood was coming from, there was simply so much of it - over his hands and on his face, on his clothes… and it stemmed from one tiny prick from his finger. And the most obvious symptom of low platelets: bruises appearing all over his body.

Wednesday and also Thursday meant CS Flow studies, where a dye was injected into the reservoir in his head and scans were taken throughout Wednesday, involving Jack lying still for 40 minutes during each scan, while a machine slowly travelled from his head to his body and around his head again. The last one of these scans was this morning. Then it was back to the bed area for more blood work and yet another platelet transfusion. I’m beginning to become resigned to the stem cell transfusion. The radioactive liquid given with the antibody will reduce the counts even more, if Jack’s counts are not sustaining themselves now, it is unlikely they will recover significantly by next Thursday, the date now scheduled from him to begin the antibodies.

I signed the consent forms for these today, and learned that Jack was at the final tier of this Phase I clinical study, (to determine the safest dose of 8H9 which can be given). This means he will receive maximum dose of 131 I radioactive fluids – something I’m not at ease with. Jack has already had huge doses of the same radioactive fluid last year which eventually cleared the widespread disease from his bones, but this assassin charges a high fee of the rest of the body. But we have entered this study because choice is not a luxury we possess. There is no option. If we do not participate, Jack has no hope of recovery. And when you enrol in clinical studies, you have (quite properly) no say in what measures are given to your child. The study is first and foremost, about testing the safety of this new medicine.

The half term break has also meant no school for Jack this week, so each day at hospital, as we wait for each procedure, he runs happily off to the huge playroom, which is equipped with every game and activity a child could wish for, and the most patient and helpful staff. For once Jack hasn’t been focused on ‘Star Wars’ Playstation, he has been playing games, making pizzas and painting.

Somehow I think next week will again prove problematic in terms of getting Jack back to the 9th floor classroom when ‘school’ returns. But for now, school is not the most significant thing on our minds.

We arrived on the 9th floor to an eerie empty waiting area that we are used to seeing crowded with people every day. About 10 minutes later the staff began arriving and soon Jack was in a gown, on a bed and watching channel 26 (cartoons). He needed yet another platelet transfusion – they need to be above 100 for surgery. An hour or so later and we went down to the 6th floor to prepare for surgery. Another bed, another TV, but Jack wanted to cuddle up on my lap. Again he was very quiet, content just to cuddle and watch TV. And he watched without uttering a word, as the dreaded ‘white milk’ was pushed through his port, holding my neck very tightly. Within seconds his arms went limp and slid gently down, and he was asleep. This time Dr. Souweidane was present with his team, he has a wonderful calming manner, and a soft voice. He had taken the time to come and talk even though this was a very simple and routine procedure for him, and for once I was able to hold the tears back (despite numerous general anaesthetics I still have a problem with tears as I hand my unconscious child over to strangers…) as I gave Jack that last kiss before he was whisked off. For once I felt Jack was completely safe.

Just over an hour later Dr. Souweidane came out full of reassurance; all had gone well, the reservoir had been pushed back down even deeper, than before, and some ‘biological glue’ had been applied to the inside of the scalp to try and ensure the skin stayed flat and didn’t allow the fluids to build again. Jack was still being stitched up, but we would eventually be called to the recovery area. He warned us there would be a big bandage around his head, to apply pressure in order to prevent the swelling re-occurring.

And that was how we found Jack. Fast asleep in recovery with what is best described as a white ‘turban’ complete with peak at the front. As he regained consciousness, hunger pangs set in. It took another couple of hours to find a bed for him on the ward, by which time he could think of nothing else but food. The nurse handed him a chocolate doughnut; although the intention was well meant I was annoyed that this should be the ‘nutrition’ he gained straight after surgery, but Jack was already munching his way through it rapidly. This killed the hunger pangs that would have allowed us to get some green food into him, following the doughnut he sought only chips/fries.

Surgery seems to have given us our happy little boy back again. He’s been full of fun and just happy ever since. He fell asleep at 6pm, completely missed the evening meal (and didn’t wake again despite our noisy neighbours) until the Neurology team announced their presence to all by the loud swishing back of the curtains, just after 7am. Jack’s ‘turban’ would have to stay on for at least 4 or 5 days and a CT scan had been arranged for sometime during the morning. Jack was ravenous again but despite much searching I could find little ‘green’ food on the menu. He wanted pancakes, and straight after ordering these, the attendant arrived to take him down for the CT scan. No fuss, no questions, Jack was happy to go, his only request was that I carry him rather than sitting him in a wheelchair. The scan went smoothly, and very quickly, and I had to wonder what had happened during the tumour removal in December, that had removed some of the happiness that this latest surgery had returned! After lunch he was allowed home, or rather back to the Ronald McDonald house. I was very glad that the pavements had been cleared of the snow although it had been pushed to the sides. As we left the hospital Jack pointed to the thick dark grey slush and asked ‘what’s that?’, I had to ask him 3 times ‘what’s what?’ before I realised he was talking about the snow…he’d never seen thick snow like this, certainly not piled up this high by the sidewalk and dirty grey with the passing traffic. ‘Slush’ I said, then had to explain it wasn’t the ‘slush’ drink we can get at Clown Town, it was dirty snow. He sat back contented that he would soon be back at the RmcD house and able to join in the ‘snowballing’ that his big brother had been participating in! I decided it was probably best not to mention then and there that there would be no way those stitches would be put at risk of a snowball, thinking back to a certain football incident on Christmas Day!

13th February 2007 Jack had quite a good weekend. Once again it was cold, but still no snow. Connor picked up another cold which turned to tonsillitis and so for at least one day we managed to get them both wearing paper masks to prevent the spread of bacteria. Jack’s last blood count showed he wasn’t yet neutropenic, but he wasn’t far off it either.

Monday morning and the usual difficulties in getting Connor and Rhian up early, following yet another late night at the Ronald McDonald House. Every night activities are being run by volunteers at the House, which in one respect is great, and the volunteers are very good during the week, shutting down early enough to get all the children in bed early. However, the weekends here are very special, certainly for our children. There is always something going on and even on a Sunday night, it’s hard to be cross when they come back to the room late simply because they are generally very good about returning precisely on time during weekdays.

Jack, as predicted, needed yet another platelet transfusion. He has been switched from Bactrim to a different antibiotic, Pentamedine which he is given intravenously. These medicines fight the bacteria responsible for the onset of pneumonia. So Monday was a long day. He arrived back at the RmcD house, at 4.15pm late for his new teacher, Cathy. She would assess him and establish a plan to try and keep him at a level of education relevant to his age. Jack seems to enjoy learning and the maths challenges he has been receiving, until placed in between Anne Marie – the most amazing teacher with a classroom on the Paedatric Outpatients Unit at Sloan - and the playroom Playstation game. Jack until now, has resisted the temptation his brother fell victim to long ago, but as Thomas the Tank Engine fades, and Spider Man doesn’t ‘do it’ in quite the same manner it does for his little friends, the new alternative, unfortunately, has become Playstation LEGO Star Wars.

Tuesday morning saw us back at Sloan, bright and early for another blood test. His platelet count was good, at 86, but they wanted another transfusion, to get the platelets up further, as surgery would not be possible if they fell below 100. So following the blood test, and as the blood counts were awaited Jack was duly dropped off at Anne Marie’s class, having been swept swiftly past the playroom. But the culmination of the class saw Jack’s disappearance while his mother talked to another parent, and unsurprisingly his reappearance in the playroom attached to a certain Playstation and LEGO game. And when the blood counts had returned and it was time for an examination, Jack threw his first public tantrum. He was relieved of the controller and carried out to the corridor and strongly advised, but once in the consulting room he refused to oblige, being carried to the examination chair sobbing like the victim of some dire misadventure. He was again carried to the scales and to the height chart. And while the forthcoming surgery was discussed, the sobs became persistently louder while all around tried their best to ignore him. Linda the paediatric nurse had never seen Jack like this. Most of the staff hadn’t – and so Jack found himself being continually asked why he was crying; unable to give a reasonable explanation, he would only sob louder.

Ten minutes later and having had his prized ‘jelly frog’ (a stretchy slimy rubbery thing) confiscated, he was marched back into the consultation room where he tearfully apologised for ‘being horrible’. In fairness, it was in the consultation room that he learned an MRI scan was about to ensue. This would involve another 40 minutes lying still without moving an inch, in a doughnut machine which makes awful vibrating noises, but extremely loud ones, so ear plugs are essential. Jack hates these for a number of reasons, but mainly because of the noise. We had half an hour to spend so we went back to the playroom, past the Playstations to the craft desk where he made a beautiful Valentine’s box for his nurse. Then to the MRI suite.

Still in a subdued state, he tearfully lay completely still through the whole scan, watching me through a small mirror, while tears ran down his face. For some reason this MRI didn’t seem as noisy as the last two and it seemed to go much faster. He had green disc markers placed all around the circumference of his head which were outlined in black marker. We were slightly surprised to learn these had to stay on until the next morning, so the doctors could recognise the scan points.

But we had a much more relaxed little boy on our hands thereafter. Then back to the 9th floor, where a bed had been allocated, and Jack began his antibiotic followed by platelet transfusion. We were given a baseball cap to cover up the markers, but back at the RmcD house, the hat was abandoned. Jack is nervous about the surgery tomorrow; he was quiet but unsettled and put himself into bed at 8.30pm as I sat on top with the computer. He wanted only to cuddle. He knows he’s is only having the reservoir replaced, but he hates the ‘white milk’ which gradually sends him to sleep. And he knows there is nothing we can do about that so he has stopped talking about it

And so here we are, he is fast asleep now, his head is still swollen with fluids and the dislodged reservoir, it is painful for him to pull sweaters over the top, which in the cold weather he definitely needs. I hope tomorrow means an end to the swelling and headaches he has been having. At 6am we will leave for Sloan, and outside it has finally started to snow!

21st May 2006 Jack’s first week passed quickly in a haze of unfamiliarity quite daunting to a 4 year old , new surroundings, new medical terms, new accents, different money, different biscuits….a hospital that had a playroom with a complete set of Thomas the Tank tracks and brand new engines. The Bone Marrow tests (samples taken from Jack’s bones in 4 different places), the Echo Scans, the MRI scans, the MIBG scans, and the CT scans (both involving hours of lying completely still) seemed a distant memory after a hectic weekend at the Ronald MacDonald House.

Yvonne, Richard and Jack's message to you:

“The combined effort of Jack’s supporters has led to the accomplishment of a seemingly impossible task in an amazingly short period of time. The hospital’s initial costing for his treatment, $350,000, has been amassed. Richard, Yvonne and Jack would like each and every one of you who wished us well, supported us and gave to us, to know how much we appreciate your kindness and compassion. Also to the children; the pensioners; the families; our family; our colleagues; to the businesses and business people; to the people of Barnet / London and everyone woldwide who all contributed to helping Jack - thank you.

The prospects of helping other children and their families who find themselves fighting similar life threatening illnesses excite us. The purpose of money already given or yet to be given, which exceeds the costs of Jack’s treatment will be used to benefit such individuals such that they might obtain help from sources that would otherwise be unobtainable.”

Jack lay perfectly still for the whole scan, and at the finish, his collar was wet having soaked up tears which had run from his eyes, but he, lay still and did not complain.  We received the results the following day.  They were not, however, clear cut.  Although it was believed the unknown quantity on Jack’s left kidney were not tumourus, and it could well be damage caused following surgery. The results were encouraging but were not completely decisive. 

A decision had to be made about the continuation of treatment in the UK which would involve radiotherapy and it needed to be made for the week beginning the 15th May. If Jack started radiotherapy, then anti-body therapy’s use would be compromised. But would further delays in treatment of some sort start the pendulum swinging back in the cancer’s favour? Nobody knows the answer to these questions and the responses are always, ‘maybe’s / it might tend to’, ‘delay could……’ etc

And then two things happened.  Somewhat miraculously, a huge donation was received pushing the Appeal’s total beyond the halfway figure; further MSKCC altered their position with regard to the funding, or rather they would accept a deposit of $125,000 to secure Jack’s consultation and plan the further treatments.

In meantime, Jack attended the Police Training School on Friday 12th May, to watch the passing out parade and to accept a cheque in excess of £3,000, funds raised by purple intake recruits in less than 5 weeks!  Jack visited the driving school and had a fantastic time on the Skid Pan,( his father sat in the back seat feeling ill).  Jack had really enjoyed the experience, and arrived home at 6pm, asleep by 7pm, thanks training school!

So here we are on 14th May, literally halfway across the Atlantic on a Virgin flight……Jacks’ curled up asleep and we are at ease now, peaceful and happy knowing that at this moment we are making progress.

Lots of thanks…… Christchurch School for a fantastic car boot sale. Nas and family for the idea and help in gathering and selling the free fruit. Stuart, Karen, Manda, (and those officers who understood her urgency). The children with their collecting tin harassing the traders. Nadya and Kirsty for donating their hairdressing tips, Lucy and Natalie for huge efforts collecting and organising, Lee and family for collecting and sheer determination,

Andy for the lift to the airport. All those people and family who yet again gave and gave. And to those that made such a difference in that singular act – thanks.

Thanks also to Clara for all her help handing out flyers everywhere and supporting the Appeal with all her efforts, it’s very much appreciated.

6th May 2006 It’s a busy day, with lots happening for Jack’s Appeal, The Andy Morrison Memorial cycle race, a sky dive, a dog display at Leavesden and a sponsored walk starting at East Finchley which Barbara Windsor is due to open at 9.30 am. And where are we?.....in hospital waiting for a platelet transfusion. Jack has blood tests every other day to ensure his blood levels are maintained, and we discovered last night, his platelet count was down to 8, it would have been too much of a risk to take him on the walk without a transfusion first.

We thought if we got here early enough, we’d be out in time to see Barbara, but not so! A platelet transfusion usually takes 45 minutes, but the nurses have got it down to a fine art and Jack tolerates the transfusion over 30 minutes, but as usual problems arise. We arrive on the ward at 7am, ready to go. The platelets are ordered from the lab, and quickly arrive on the ward with finite timing…..but it’s the wrong platelets…never mind, they’re returned to the lab and a new bag ordered, which fortunately are ‘in stock’ in the lab downstairs!!! At 10.30am, we’re still waiting, and even Jack, [having watched Thomas the Tank until it becomes in serious danger of being relinquished to the bin], suddenly chips in “they’re going to start without us, aren’t they Mum” and slowly it dawns on him, the only chance he has of seeing Barbara, is in the next edition of East Enders. 4 1/2 hrs later at 11.30am and we finally get started on the transfusion……..

Meanwhile the other half of team Brown was at East Finchley. None of us had ever met Sara, (the creative sponsor of the walk) and what a pleasure it was. She and her family had done a superb job of cultivating over a hundred walkers; there were banners, balloons and even a piper. Barbara was a delightful and helped motivate the crowd for the up hill challenge, posing for photographs and then ushering us off to the strains of the pipe. How Sara thought of and obtained the piper is an unknown to us but he turned a group of strangers into a disciplined ‘Appeal Machine’. Sainsburys’ staff in Tally Ho were on hand at the halfway point with drinks and snacks…..thank you.

I spoke with many of those involved in the walk and realised that the motivations for wanting to help cover a broad spectrum; people identify with Jack; identify with cancer; identify with family – the humanity and sincerity of people should never be under estimated. I apologise to anyone I did not get to talk to.

Many within the group were children; two of whom are brothers of a girl who is being treated at GOSH for leukaemia. – what a fantastic thing! All our love and best wishes to Star and the family.

Jack and Yvonne did make the end of the walk, which enabled the little monster to help himself to sweets intended for those children who had actually done something!

2nd May 2006 Jack had Ultrasound scans last Wednesday to try to identify something which was discovered through CT scans, on Jack's kidney. However the Ultrasound was unsuccessful in telling us what was on the kidney. On Thursday he had GFR tests which showed both kidneys have been damaged by the chemotherapy and treatment he has been through. The Left kidney is doing 1/3 of the work and is much smaller than the right kidney which is doing 2/3 of the work.

Jack too has had a good week. For the first time, since early January, he went to back to school. We're also able to convince him to eat himself and since the tube broke suddenly, this brings the nasal feeds to an abrupt end.

21th April 2006 End of the Easter school break It’s been a little while since we’ve updated you, and this has been for a number of reasons. The first, is that we wanted to enjoy having Jack at home, and being a proper family again. However the children have been so excited about being together again, that they tend to go off together, so we for once, are feeling ‘left out’.

The second reason is since our appeal was broadcast on London Tonight, on Easter Sunday, and followed by local advertising, our email boxes are full, both at work and at home. The support and encouragement we have received has been overwhelming, and very, very much appreciated. People write, telling us they can only give little donations, and we tell reply. that’s all we want. If you’re prepared to pass on our web link to others, who pass it to others, and everyone donates £1, we could do this very quickly.

We have tried hard, to the point of exhaustion, to reply to the emails and letters and we had technical difficulties on the way.. I’m sorry if I haven’t replied to all yet.

I’ve been asked to clarify 3 things:

1. Will 2Simple take a portion of the money you donate
2. Why aren’t the antibodies available in the UK
3. What other ways can you help

1: The Jack Brown Appeal is a separate appeal working under the wing of 2Simple Trust. We could not have even begun this mammoth task without the help of our friends there all of whom have been rushed off their feet for the last few weeks, helping us set up a web page, designing flyers, arranging printers for posters and flyers and raffle tickets, sorting out raffle prizes and so the list goes on. To date, they have been able to do all of this without using ANY of the funds donated, which is a magnificent feat.

2: A trial involving the antibody technique was due to be trialled in the UK. Our enquiries suggest that the initial company commissioned for the production of the antibodies failed to complete the task. A second program to install the method as a trial was commenced. The current status of antibody therapy in relation to Neuroblastoma is such that a European trial is now in existence. The UK is not included within the trial group. Jack’s previous therapies exclude him from participation in these trials. Additional enquiry has suggested funding to obtain antibody therapy “off-trial” but in Europe would fail due to the limited supply of the relevant drugs. Our only recourse is in Amercia, and now specifically Memorial Sloan Kettering Cancer Centre (MSKCC).

3: Advertising our campaign. PROMOTION AND DONATION are the key. Emailing the link to everyone in your mail box…calling us for Posters or Flyers. If we advertise it enough and everyone gives £1 we will do this quickly.

In addition to the efforts of the Trust, we have received inspiration from YOU, as to the varied and imaginative means by which money and publicity can be raised. These have included:

- Collection boxes
- School events: swimming tournaments, car boot sales, quiz nights, No uniform days
- Selling Raffle Tickets
- Street collections
AND…any other suggestions that you can give us!!

EACH AND EVERYONE OF YOU COUNT IN ACHIEVING OUR GOAL.

BACK TO JACK

The re-insertion of his Hickman Line went smoothly on 12th April, and it gave us an opportunity to thank the nursing staff on Lion Ward at Gt Ormond Street for the exceptional care and attention throughout the year.

Arriving home, we realised we had forgotten the pattern of homecare, the support team provided by our local hospital, at home. We returned to a regime of regular visits and blood tests and due to the effects of the chemotherapy, Jack found himself in the local hospital again on 16th April, 18th April and again on 21st April for blood and platelet transfusions.

21th April 2006 Another platelet transfusion at our local hospital AND hopefully a peaceful weekend. We have received so many cards and letters, some brief and to the point, some quite moving, and it is with genuine remorse that I have to explain that it’s impossible to reply. We will keep each and every one of them for Jack’s scrap book. The only way I have of responding, is by saying Thank you to all of you on our web site with the expertise at 2simple Trust. Jack LOVES receiving the cards, he’s beginning to put letters together to make words, so it helps his reading efforts immensely. KEEP THEM COMING! Finally, to all of you who have offered to organise sponsored events, if you forward photographs, details of yourself and the event, 2simple Trust will post these on the web page. We soon hope to include details of the funds raised to date and how things are progressing, as well as future events we hope you will support.

14th April 2006 Jack attended the local hospital in the morning to receive G-CSF to boost his stem cells and therefore his immune system. He was extremely impatient and reminded the nurses to hurry up, as he was off to “Thomas Land”. {Thomas day out at Ropley). At 1.30 pm the Brown Family found themselves on the South bound platform to Alresford to be met by Thomas who in turn saw a 4 yr old boy with the largest smile (complete with nose tube). It was a perfect afternoon which Jack is still talking about.

10th April 2006 Another milestone. Today our consultant confirmed what we had prayed for – that for now, Jack’s well enough to come home.

7th April 2006 Today, Jack has undergone an MIBG scan to assess the effect of high dose chemotherapy. The patch in his skull which had residual disease, appears clear. The rest of his body seemed to lack any clearly flared areas. But we are waiting for the formal consensus.

7th Feb 2006 Jack returned to hospital for high dose chemotherapy. An infection in the Hickman line necessitated its removal.