Monday, 5 July 2010

Looking back and looking forward

When Adam was diagnosed with Neuroblastoma he could barely walk. He was given pain relief to allow him to lie comfortably in his bed. He was drinking only sporadically and was put on IV fluids because of dehydration. He stopped eating and very quickly became frightfully thin. He was severely constipated, and manoeuvring him on to a bed pan so he could try to go to the toilet brought frequent cries of pain. His bone marrow was stuffed full of Neuroblastoma, 85% of it had been eaten up by cancer cells. 

That was July 2009.

During the next 40 days we witnessed changes in both Adam's appearance and his general disposition. His hair fell out; he lost his eyebrows and finally his eyelashes. His face became bloated by the steroids he was on. There are photos of Adam that are not our son as we recognise him. He grew stronger almost by the day, and his day 40 CT scan showed that the tumour had shrunk significantly and his bone marrow aspirates were clear. It was fantastic news. 

Adam continued to improve. He spent less time lying around and more time on his feet. Less time watching DVDs and more time playing. I remember the first time he went back outside and played in the garden. It was late and almost dark. Adam was in pyjamas, a jacket and flip-flops. He was still a little unsteady on his feet, but there had been a time when we doubted we would ever see him running around outside again.

When induction therapy ended at day 80 we expected Adam to be clear of disease. Not hoped, expected. Looking back we must have been stupid to think this way, but the changes in him had been so profound since those dark days in mid to late July. Mentally we had already begun preparing ourselves for stem cell harvest and surgery. Dates for surgery at St Georges had been pencilled in for the week commencing 9th November. When we sat before our consultant and she told us that his bone marrow had come back positive for disease it was a huge blow. That was when we truly realised that how Adam is visually, and how Adam is medically, are not necessarily the same thing at all. We went home, held hands, and sobbed.

That was October 2009.

Adam moved on to a new type of chemotherapy - TVD. One cycle per month, re-tests after every two cycles. For the first four cycles he responded to treatment but his bone scans continued to show widespread disease, and his bone marrow results remained positive for Neuroblastoma. Our consultations began to become repetitive. We started the appeal in March as Adam started his final two cycles of TVD. A full 6 months after we received the day 80 results and this time the news was even worse. Bone scans and bone marrow results the same as two months previously. Adam was no longer responding to treatment, he now had 'stable' disease.
That was April 2010.

Adam moved to another new type of chemotherapy - temozolomide and irinotecan. The use of these non-approved drugs required written submissions by Adam's consultant and the funding for them had to be signed-off by our local NHS trust. Adam was approved for two cycles, with further approval required for any continuation, clearly dependent on how he was seen to respond. He underwent an MIBG scan, followed by bone marrow aspirates and trephines the next day. We were told within 24 hours that his bone scans had come back unchanged. As there was no clear evidence of progression, approval had already been sought and granted for another two cycles. Bone marrow results would take a week to process. Last Wednesday we attended clinic expecting to once again hear that the situation remained the same. Wrong again. We were told his bone marrow had come back clear in both samples. For the first time, after battling this disease for over 11 months Adam had reached the first rung on the ladder.

That was June 2010.

The clear bone marrow result means we now have a plan, a way forward. There are no certainties, nothing is straight-forward and believe me when I say the worst is still ahead. This week Adam will undergo a stem-cell harvest. On Wednesday morning he will have a vas-cath fitted into his groin under general anaesthetic. This operates like a dialysis machine. Blood is extracted, the stem-cells are filtered out and stored, and the blood is put back in again. They are attempting to harvest 6 million cells over the course of Weds to Friday (two hours each day), enough for two (transplant) procedures. Often this proves to be difficult in children that have been heavily pre-treated... and they don't come more heavily pre-treated than Adam. If they fail to get the necessary stem cells the plan is to give Adam another course of chemotherapy - he still has active disease as shown on his bone scans; and retry harvesting using a new supporting drug called plerexifor. This acts to mobilise the stem cells and has proven to be successful where natural production has been suppressed. It's also unapproved and unfunded, but I can't see Adam being denied access to it.

Even if the stem cell harvest is successful first time round another course of chemotherapy will still be given before Adam goes for surgery. After surgery the plan is to do MIBG radiotherapy, where Adam will be injected with the same active agent as with his scans but in a vastly higher dose. He'll then have to spend a week or more in the special lead-lined room, designed to protect the rest of us from radioactive contamination.

After MIBG therapy is high-dose chemotherapy; then stem-cell rescue (transplantation by one's own stem cells), radiotherapy, and finally immunotherapy and retinoic acid. As of today this will be in either America or Germany in November/December 2010.

We can't allow ourselves to get carried away. Adam may have cleared the first hurdle but he has many more to go, much bigger ones too. He is not even at the stage most children reach after 3 months. And the majority of those still don't make it beyond two years from diagnosis. That's the brutal truth of this disease.

Outside the fear and worry, the last few months have been relatively easy on us as a family. Adam has been in hospital only as a day patient and needed very few supporting drugs, none administered by IV. I have almost forgotten the last time he had a blood or platelet transfusion. He has been well enough to enjoy days out, have trips to school, and participate fully in a wide range of activities. It's all about to change. For the next 4 or 5 months Adam will be in hospital more or less full-time. You won't be seeing him running about in the park, or wandering around town nagging me to buy him something. You won't see us all out as a family. That's the price we must pay to try and get Adam better. It's time to transition ourselves back into 'hospital mode'.


  1. Thinking of you and praying for you all as you move into the next part of the journey.
    P x

  2. Much love & prayers for you all.

    MD xx

  3. Thinking of you, big hug and lots of love to you all xx

  4. Words are not enough. What you have to face now is so hard, but it is so good that you have gotten here and can move forward. I can't wait for the day you post that Adam is playing in the garden and driving you all crazy with his energy. Much love to all your family xx