The January of 2004 heralded our youngest child's start within the same school as his elder brother and sister. We were confident of the family happily maturing within the confines of everyday stresses. But then Jack got a limp; an annoying but insignificant injury, which would disappear...

When after a few days the limp remained, we took Jack to our doctor, who instructed us to bring Jack back in a few more days if the limp persisted. The limp did persist, and with Jack being in obvious and significant pain, we returned again to the doctor who wrote a referral letter to the pediatric department at the local hospital. As Jack's condition worsened, phone calls to pediatric department revealed we were going to have a long wait. Significantly, Jack's nursery had been making observations and began writing to us, pointing out things that we didn't see, as we were both at work during the day; that Jack was unable to stand up unassisted, his lack of interest or involvement with the other children, seemingly as a result of the pain in his leg...... We took Jack to casualty, where the first diagnosis was arthritis, we were sent home reassured somewhat, until the pain worsened and we took Jack again and again and again to casualty; sometimes he was admitted for a weekend, sometimes he wasn't. And over time, the diagnosis moved from irritable hip to arthritis to a non-specific infection.

Finally, having come home early one afternoon and finding Jack lying on the settee in terrible pain and unable to move, with the curtains pulled so the light would not hurt his eyes, I phoned the hospital screaming that there was something very, very wrong with my child and why could they not see that. They agreed to see Jack again, and he was re-admitted that same evening, and placed once again on antibiotics.

For the next three weeks Jack remained in Barnet General Hospital, on antibiotics. This involved insertions of canulas, where the needle had to be inserted into the vein. Jack's veins were tiny and each insertion, which became a daily event, involved many attempts before the successful insertion was finally made. Having had a canula inserted I knew what a painful experience this was for adults, not to mention a small child. Jack grew to be terrified of the "treatment" room, and would clutch frantically at my sleeve, or pull my face to his looking desperately in my eyes screaming "don't let them do it Mummy, please Mummy don't let them do it". This I will never ever forget, I would cry with him because of course, you had to let them do it, because this was going to make Jack better, wasn't it?

Jack had an MRI scan, numerous x-rays and a biopsy taken of his leg. We were informed the results of these were negative, and took comfort from the doctors' assurance that within 4 weeks at home "all would be well".
Jack was discharged on a Thursday, and it seemed that our worries were over, the infection would clear. Twenty four hours later, Jack's pain and limp were back with a renewed severity. We returned to the hospital on a Saturday with little effect. Then we noticed that two swellings had occurred in Jack's mouth. The doctors were baffled and told us to take Jack to an emergency dentist.

We abandoned our two older children at church on Sunday morning and drove to Pinner to the only emergency dentist that could accommodate us. She examined Jack and straight away told us that what she saw was "definitely not dental", and advised us to return him straight away to the Maxo Facial department at the hospital.

The following Monday we were seen by a consultant at a second hospital. Despite Jack's hemoglobin being desperately low, they conducted a biopsy on the swelling in his mouth. Two weeks later, we returned to the hospital to learn what the results of the biopsy were. We had tolerated two weeks of knowing something was badly wrong, and were desperate to receive the results. However we were informed the results were still not available. We had realized that Jack's symptoms must amount to a much more serious condition than we had been led to believe. The failure to have Jack's results available was, to us, completely intolerable. We refused to leave the hospital until someone had taken responsibility. I couldn't stop crying, sitting outside the office of the consultant and refusing to leave, until a nurse from the children's ward took us to her office for 'a chat'. Later that same day we were informed that Jack had neuroblastoma cells in his body. We were devastated. We had never heard of neuroblastoma. We were told it was a form of cancer and that we would go to Great Ormond Street Hospital where we would learn more.

The moments before we were told that Jack had cancer, you could sense that the news was bad. Those who work within an institution dealing with the public grow a shell labeled 'only to be shed in times of emergency'. It was just before we met our 'appropriately trained cancer news breaker' that we recognized the nurses' demeanor change. The hardest news is landed with the softest of blows.

Jack came home that night, but the next morning we were to present ourselves at Great Ormond Street . I immediately got onto the internet, desperate to find out more about this beast that had entered our lives. I spent so long, too long, on the computer, unbelieving of what I was reading, and slowly desperation crept into our lives.

And that night we looked at Jack, that perfect, beautiful little boy, and we knew he would believe us when we told him everything was going to be alright. That the doctors needed to do some more tests and give him some more medicine.
But, for the first time, we didn't know...

A year later and Jack has had 15 bouts of chemotherapy; two bouts of radioactive Mibg treatment and has tolerated isolation over a 3 week period; several infections; a 4 hour operation to remove the main tumor and many other lesser procedures under general anesthetic. With each procedure there has been a severe toxic effect on his liver, his kidneys and his heart.

Jack was about 98cms tall, 3 1/2 years old and weighed 15 kilograms at the start. At 4 1/2 years he's about 105 cms tall and 13 kilograms.

Jack is a devoted follower of Thomas the Tank Engine. He and Thomas have trodden this rough path together over the last year, and Jack remains the accepting and uncomplaining child he was a year ago.

More amazingly, Jack is still laughing and making people laugh. He doesn't get down, he tries hard at every new challenge and he fights. Most of all Jack LOVES. He is so very full of LOVE.
(back to top)

• New York held hope through novel therapies and a commitment to research.

• Jack was Jack and had fought hard for too long to retain his essence and quell the cancer.

So two years later there is no happy ending but more importantly the story continues. Jack has undergone antibody therapy. He has suffered three relapses involving areas of his bone, bone marrow and brain. Jack has endured brain surgery, radiation, chemotherapy, isolation, stem cell rescues and now relocation to Vermont for his latest trial. But none of this paragraph, other than the first and last sentences, is important. There maybe is no happy ending, but there is still a happy, 'healthy', growing Jack.

Two years of finding friends of Jack. Friends of ours – friends who have made the strange familiar; friends who have lifted despair; friends who have arrived when help and hope appeared albeit vanished. Friends like you who continue to read entries like this and support us and the research that will hopefully one day save our son.
(back to top)

The scans and bone marrow procedures have been concluded. Jack did well and maintained his composure throughout the day’s scans. Until, that is, he finally woke at 4:00pm from the anesthesia. The little squish, quite rightly, demanded all manner of pseudo-food and, yes, he was furnished with one box of poultry lumps; some starchy, fried, longish things and a liquid purporting to be related to a citrus fruit. Oh and a plastic toy. Regardless of the ingredients, something like a placebo effect occurred at the mention of McDonald's and Jack calmed down and came to.
Connor and Rhian had found fine company for the day and we joined them early evening. Jack had regained a sufficient sense of self to become engrossed by a movie and the wonderful company of the Owens’s family whose friendship has become very significant.

The tests, themselves, suggest the neuroblastoma cells have been vanquished in almost all areas. One fortress of cancerous activity still remains. Jack is going to have radiation to the spot in the femur starting Tuesday, (slight presumption as we haven’t spoken to the Doctor yet but Yvonne will be sharing a van with him tomorrow as she joins a six person team from UVM to run the 100 on 100 VT – we will start radiation on Tuesday).

Thereafter – probably – 10 days of radiation and a couple of days of tiding up care, we come - home. Sounds simple I know, there must be something that I’ve forgot’nnnn.........................ahh, yes, the drugs. We are going to try Jack on, (pause for breath...), Celebrex, Cycolphosphamide, Lovastatin, Rapamycin, Gossypol and Tetrathiomolybdate. And NO not necessarily in that order.

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

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

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

The smallest of words is a child’s, is Jack’s, will and want for life.
(back to top)

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

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

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

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

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

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

Jack began suffering pain on 23rd February 2009. His pain has produced a psychological return to the days in 2005 before we knew of the name of his illness. There was pain in the femur of the left leg then. Pain intense and unfathomable. Now the hurt is explicable but where ignorance once lent itself to a resolve and a belief in healing being inevitable, we now have reason, experience and knowledge.

Last Sunday Connor, Rhian and I left Burlington, left Yvonne and Jack. Jack was composed at the airport. In fact it was surreal because while we exchanged words, hugs and kisses – all of which were intended to demonstrate our assurance in the future, our re-uniting at Easter – an invisible prowler kept shouting, ‘no you won’t’.
Tuesday night 24/25th Yvonne phoned. It was necessary to return to Burlington. We spoke of decisions. Wednesday I returned, just before midnight.

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

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

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

We have discussed the options for Jack.

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

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

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

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

Jack’s long entanglement with the cancer has lent me a perspective during the scans. I expect to see the cancer as much as I expect to see Jack. What I cling to is that the shape of the cancer and its reach has not extended…

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

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

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

We need your prayers more than ever..

30th April 2009.

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

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

Jack was transferred to the intensive care unit.

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

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

Jack was stilled then.
(back to top)

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

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

2nd May 2009.
Jack remains sedated. He now lies in a prone position in order that his
lungs might have an opportunity to benefit from the change in posture and a
chance to disperse the build up of fluid. Jack has become swollen from the
necessary transfusions of fluids. Fluids and medicines, which are required
to maintain his blood pressure and other vitals.

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

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

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

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

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

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

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

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

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

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

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

They have done enough for now and returned to friends.

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

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

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

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

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

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

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

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

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

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

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

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

‘Woulda-Coulda-Shoulda’
All the Woulda-Coulda-Shouldas
Layin’ in the sun,
Talkin’ ‘bout the things
They woulda-coulda-shoulda done…..
But those Woulda-Coulda-Shouldas
All ran away and hid
From one little did…………………….from one little Jack.

Click on the videos below to view speakers from Jack's Service.

Young Heroes

Kris Owens

Dr. Sholler

Richard