Ask any parent of a child with Neuroblastoma and they'll tell you the same thing. Plan at your peril. Of course I already knew this myself as Adam has been battling this disease for 14 months now. Whilst we are still a long way off veteran status we have been in this particular boat long enough to understand it's path is neither predictable nor steady.
At the moment we are supposed to be into day 4 of our first week at UCH. We're not. We're still at home. The hospital called us on Monday to apologetically inform us that Adam would not be able to be admitted the following day as they were unable to organise sufficient levels of nursing cover for the weekend period. They assured us that everything would definitely be fine for Adam's treatment to take place next week instead. I wasn't very pleased, but what could I do? Shoot the messenger, or in this particular case the radiographer who drew the short straw and phoned to let us know?
Unfortunately we'd planned. My parents had travelled down from Norfolk to look after the kids for the week. They arrived a couple of hours before we got the phone call from UCH. I'd booked a serviced apartment off Regent's Park for a week so we would have a base near the hospital from which to prepare fresh food and drink for Adam, and somewhere for me to sleep. After surgery he lost 3 kilos in weight and it showed. Not having any idea of what the catering facilities at UCH were like, and given that the parent facilities consisted of a microwave oven, we decided that getting an apartment nearby was the best option. I'm sure I don't need to tell you what the cancellation policy was one day before arrival.
We'd also started to make plans for the following weeks too; when Adam would be away with Alison, then back at UCH, and then at the Marsden for high-dose. Everything would now be shifted by a week. I had another apartment lined up for the second round of MIBG therapy, but fortunately that booking hadn't yet been confirmed and no money had changed hands.
The date of Adam's treatment at UCH isn't the only thing that's changed since my last post. The whole treatment schedule has been re-evaluated by his doctors. The fact is that Adam is at the boundary of what medicine has to offer, certainly in the UK. High-dose and transplant is an important part of 'consolidation' when there is little or no evidence of disease left. It's not designed for clearing a large disease burden, which is what Adam still carries despite all the chemo he's had pumped into his body. If he were to be put through high-dose in his current condition my view, until I am convinced otherwise, is that it would be because there is nothing else left, not because there is any genuine expectation that it might succeed where all else before it has failed. Knowing what high-dose entails, and what risks are associated with it, I couldn't be any less sure about it. To the point where I can actually seeing us saying no. It's an incredibly scary prospect.
Then there is the problem of stem cells. As we failed to get an abundant supply there needs to be very careful consideration regarding treatments that are highly suppressive of bone marrow function. High-dose MIBG therapy and high-dose chemotherapy both require stem cell transplant. Giving back insufficient stem cells can lengthen the time that it takes for the bone marrow to recover and start working again. During this period, which may extend to many months, Adam would require transfusions of blood and platelets, and could not undergo any other type of treatment which was blood count dependent.
So the new schedule is for Adam to undergo a single course of MIBG therapy and then evaluate his response.. The hope would be to find evidence that Adam is responding to MIBG and therefore be more confident that going through with the second dose is the best course of action. The twin MIBG treatments would then certainly require some of Adam's stem cells to be returned to him. The complication with this approach is that there is plenty of evidence of children seemingly not responding to MIBG, only to discover a delayed response some weeks and even months later.
So nothing is clear. Which is par for the course I guess with Adam. My own view? Sadly I hold very little hope, and zero expectation, that MIBG will succeed where all the chemotherapy that has gone before it has failed. It's not our destiny for things to go to plan. That's not a defeatist attitude. I honestly believe that eventually Adam will beat this thing. There I've said it now, I'm not sure I have before.
In terms of his general well being Adam is doing great. In many ways not going into UCH this week has given his body that little bit extra time to recover at home, in an environment that we're all familiar with. It is just 23 days since his operation but his eating, general demeanour and range of movement are pretty much back to what they were before surgery. A few days ago he suddenly began running again, and followed this up with a night-time bicycle ride 'to test the lights out on his bike.'
As time goes on we're looking at more and more ways that we can help to make Adam as strong as possible through nutrition, environment, supplementation, detox, and alternative therapies. I've bought a Far Infra-red Sauna, a water ionizer, air ionizer, air sterilizers for his bedroom and around the house. We've imported a RIFE machine from abroad. We're having a complete blood, urine and stool analysis done that will show us any metabolic imbalances, nutritional deficiencies, parasitic infections, yeast infections, digestion, absorption, gut flora. I'm not stupid and I've not gone nuts; none of this may be directly relevant to curing Adam's cancer, but it can do a great deal towards making his body function in the most effective and efficient way possible. Is there anybody that doesn't think that's a good thing? We're also seriously thinking about alternative treatments that are not available in the UK, on the NHS or otherwise. And it feels like the time is fast approaching when we need to start looking seriously at trials outside the UK for which Adam might be eligible. He no longer makes a good guinea pig in this country because his response to upfront therapy has been very different to the norm, but somewhere there might be an experiment to which he's well suited.
At the moment we are supposed to be into day 4 of our first week at UCH. We're not. We're still at home. The hospital called us on Monday to apologetically inform us that Adam would not be able to be admitted the following day as they were unable to organise sufficient levels of nursing cover for the weekend period. They assured us that everything would definitely be fine for Adam's treatment to take place next week instead. I wasn't very pleased, but what could I do? Shoot the messenger, or in this particular case the radiographer who drew the short straw and phoned to let us know?
Unfortunately we'd planned. My parents had travelled down from Norfolk to look after the kids for the week. They arrived a couple of hours before we got the phone call from UCH. I'd booked a serviced apartment off Regent's Park for a week so we would have a base near the hospital from which to prepare fresh food and drink for Adam, and somewhere for me to sleep. After surgery he lost 3 kilos in weight and it showed. Not having any idea of what the catering facilities at UCH were like, and given that the parent facilities consisted of a microwave oven, we decided that getting an apartment nearby was the best option. I'm sure I don't need to tell you what the cancellation policy was one day before arrival.
We'd also started to make plans for the following weeks too; when Adam would be away with Alison, then back at UCH, and then at the Marsden for high-dose. Everything would now be shifted by a week. I had another apartment lined up for the second round of MIBG therapy, but fortunately that booking hadn't yet been confirmed and no money had changed hands.
The date of Adam's treatment at UCH isn't the only thing that's changed since my last post. The whole treatment schedule has been re-evaluated by his doctors. The fact is that Adam is at the boundary of what medicine has to offer, certainly in the UK. High-dose and transplant is an important part of 'consolidation' when there is little or no evidence of disease left. It's not designed for clearing a large disease burden, which is what Adam still carries despite all the chemo he's had pumped into his body. If he were to be put through high-dose in his current condition my view, until I am convinced otherwise, is that it would be because there is nothing else left, not because there is any genuine expectation that it might succeed where all else before it has failed. Knowing what high-dose entails, and what risks are associated with it, I couldn't be any less sure about it. To the point where I can actually seeing us saying no. It's an incredibly scary prospect.
Then there is the problem of stem cells. As we failed to get an abundant supply there needs to be very careful consideration regarding treatments that are highly suppressive of bone marrow function. High-dose MIBG therapy and high-dose chemotherapy both require stem cell transplant. Giving back insufficient stem cells can lengthen the time that it takes for the bone marrow to recover and start working again. During this period, which may extend to many months, Adam would require transfusions of blood and platelets, and could not undergo any other type of treatment which was blood count dependent.
So the new schedule is for Adam to undergo a single course of MIBG therapy and then evaluate his response.. The hope would be to find evidence that Adam is responding to MIBG and therefore be more confident that going through with the second dose is the best course of action. The twin MIBG treatments would then certainly require some of Adam's stem cells to be returned to him. The complication with this approach is that there is plenty of evidence of children seemingly not responding to MIBG, only to discover a delayed response some weeks and even months later.
So nothing is clear. Which is par for the course I guess with Adam. My own view? Sadly I hold very little hope, and zero expectation, that MIBG will succeed where all the chemotherapy that has gone before it has failed. It's not our destiny for things to go to plan. That's not a defeatist attitude. I honestly believe that eventually Adam will beat this thing. There I've said it now, I'm not sure I have before.
In terms of his general well being Adam is doing great. In many ways not going into UCH this week has given his body that little bit extra time to recover at home, in an environment that we're all familiar with. It is just 23 days since his operation but his eating, general demeanour and range of movement are pretty much back to what they were before surgery. A few days ago he suddenly began running again, and followed this up with a night-time bicycle ride 'to test the lights out on his bike.'
As time goes on we're looking at more and more ways that we can help to make Adam as strong as possible through nutrition, environment, supplementation, detox, and alternative therapies. I've bought a Far Infra-red Sauna, a water ionizer, air ionizer, air sterilizers for his bedroom and around the house. We've imported a RIFE machine from abroad. We're having a complete blood, urine and stool analysis done that will show us any metabolic imbalances, nutritional deficiencies, parasitic infections, yeast infections, digestion, absorption, gut flora. I'm not stupid and I've not gone nuts; none of this may be directly relevant to curing Adam's cancer, but it can do a great deal towards making his body function in the most effective and efficient way possible. Is there anybody that doesn't think that's a good thing? We're also seriously thinking about alternative treatments that are not available in the UK, on the NHS or otherwise. And it feels like the time is fast approaching when we need to start looking seriously at trials outside the UK for which Adam might be eligible. He no longer makes a good guinea pig in this country because his response to upfront therapy has been very different to the norm, but somewhere there might be an experiment to which he's well suited.
No comments:
Post a Comment