Apologies for the lack of updates... fact is there is little to update you on really. Well nothing of any great significance.
Adam had a really nice week down at the caravan with Alison whilst we waited for his radiation levels to subside. An abundance of sunshine and generally good weather helped for sure. They did lots of cycling and Adam had fun feeding the ducks and swans at least once a day. We did a quick changeover at the weekend so I spent the majority of Saturday/Sunday with him, but for the most part I was at home cooking, washing and taking care of Jake and Jessica. Whilst we wouldn't have planned such a separation by choice, all in all it worked out just fine.
On Wednesday Adam came home to allow his dressing to be changed and bloods to be taken. As expected his counts are dropping following the radiation therapy. How far they will drop, and whether they'll reach levels at which transfusions are required is something that only time will tell, but it's certainly a possibility. We had hoped to coincide the return home with a trip to the Marsden to have his levels re-checked, but for some unfathomable reason we were told that they couldn't do it and we'd have to go back to UCH. There is ridiculous and then there is ridiculous. As far as I was concerned this went beyond even that. The test goes something like this. Adam holds tape measure. Person holds meter at distance of one metre from Adam and takes reading. Person looks up reading on conversion chart and determines which band it falls into. Total time taken? About 2 minutes. Given that they undertake the same treatment at the Marsden it's not possible that they couldn't do the test. Wouldn't maybe. But couldn't, absolutely not possible.
I thought about making a big fuss, it wouldn't have been the first time. Part of me wanted to make a big fuss. However, in the end after talking about it we decided to take Adam up to UCH and at the same time collect the remainder of his things which we'd been told were no longer 'hot'. Our parking dispensation and congestion charge waivers were still valid so we drove up there the next day.
We were glad we did. "No restrictions" was the outcome of the test. Adam could come home again. He was, to put it mildly, cock-a-hoop. "I am going to go home and give Jake and Jess a big cuddle" he announced. And that's just what he did.
Fast forward to now and we're all back home, united as a family. On Thursday Adam is back at the Marsden for more scans, and tomorrow I am going to talk to them about what happens next. At the moment we are in a state of limbo. Not quite sure what the best course of action is. Not quite sure how to go forward. I suppose we are collectively holding out for a complete response to MIBG therapy, after which the way would become clear again. But that really is a very remote possibility. Only a minority of children have such a response, and most are given high-dose therapy which involves two infusions given two weeks apart and in combination with chemotherapy. Adam had the mildest form possible. He's never had a miraculous response to anything so far, I see no reason to be optimistic that he will have this time.
Neuroblastoma isn't one disease, it's many different diseases. Adam is writing his own story now. What matters most that he's still here, still fighting, still well, still smiling and enjoying each day. After 17 rounds of chemotherapy, major surgery lasting 7 hours, full-body internal radiation therapy, anti-sickness medication, steroids, blood transfusions, platelet transfusions, antibiotics, MIBG scans, CT scans, ultrasounds, bone marrow extractions, catheters, cannulas, feeding tubes, innumerable blood tests, and enough pills to last a lifetime.... he is still smiling and enjoying each day.
Adam had a really nice week down at the caravan with Alison whilst we waited for his radiation levels to subside. An abundance of sunshine and generally good weather helped for sure. They did lots of cycling and Adam had fun feeding the ducks and swans at least once a day. We did a quick changeover at the weekend so I spent the majority of Saturday/Sunday with him, but for the most part I was at home cooking, washing and taking care of Jake and Jessica. Whilst we wouldn't have planned such a separation by choice, all in all it worked out just fine.
On Wednesday Adam came home to allow his dressing to be changed and bloods to be taken. As expected his counts are dropping following the radiation therapy. How far they will drop, and whether they'll reach levels at which transfusions are required is something that only time will tell, but it's certainly a possibility. We had hoped to coincide the return home with a trip to the Marsden to have his levels re-checked, but for some unfathomable reason we were told that they couldn't do it and we'd have to go back to UCH. There is ridiculous and then there is ridiculous. As far as I was concerned this went beyond even that. The test goes something like this. Adam holds tape measure. Person holds meter at distance of one metre from Adam and takes reading. Person looks up reading on conversion chart and determines which band it falls into. Total time taken? About 2 minutes. Given that they undertake the same treatment at the Marsden it's not possible that they couldn't do the test. Wouldn't maybe. But couldn't, absolutely not possible.
I thought about making a big fuss, it wouldn't have been the first time. Part of me wanted to make a big fuss. However, in the end after talking about it we decided to take Adam up to UCH and at the same time collect the remainder of his things which we'd been told were no longer 'hot'. Our parking dispensation and congestion charge waivers were still valid so we drove up there the next day.
We were glad we did. "No restrictions" was the outcome of the test. Adam could come home again. He was, to put it mildly, cock-a-hoop. "I am going to go home and give Jake and Jess a big cuddle" he announced. And that's just what he did.
Fast forward to now and we're all back home, united as a family. On Thursday Adam is back at the Marsden for more scans, and tomorrow I am going to talk to them about what happens next. At the moment we are in a state of limbo. Not quite sure what the best course of action is. Not quite sure how to go forward. I suppose we are collectively holding out for a complete response to MIBG therapy, after which the way would become clear again. But that really is a very remote possibility. Only a minority of children have such a response, and most are given high-dose therapy which involves two infusions given two weeks apart and in combination with chemotherapy. Adam had the mildest form possible. He's never had a miraculous response to anything so far, I see no reason to be optimistic that he will have this time.
Neuroblastoma isn't one disease, it's many different diseases. Adam is writing his own story now. What matters most that he's still here, still fighting, still well, still smiling and enjoying each day. After 17 rounds of chemotherapy, major surgery lasting 7 hours, full-body internal radiation therapy, anti-sickness medication, steroids, blood transfusions, platelet transfusions, antibiotics, MIBG scans, CT scans, ultrasounds, bone marrow extractions, catheters, cannulas, feeding tubes, innumerable blood tests, and enough pills to last a lifetime.... he is still smiling and enjoying each day.
What a trooper your boy is ... xx
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