So the last couple of weeks have just involved waiting on results and also doing lots of research and making hard decisions! But it has also allowed Chester’s body to recover before the next phase of treatment starts.
As I mentioned in the last update post, we were waiting for Chester to have a bone marrow biopsy/aspirate. This was to see how well he has been responding to treatment and then to decide which arm/branch he follows on the protocol.
It had to be postponed a couple of times due to his blood counts being too low, but on the 30th of July his bloods were all high enough to go ahead so he was put to sleep and had his bone marrow biopsy. He handled it pretty well and was allowed to go home a couple of hours later.
Before I tell you about the results and trial etc, in between it all we have had a couple of chilled weeks. We have got to spend it together at home and Chester hasn’t been feeling too bad. We have been out in the garden and playing lots.
Chester loves fast cars and he got to go out for a quick drive in his uncle Darrell’s new BMW. He absolutely loved it!
Chesters also got to sit in a police car and the officer let him put the sirens on. But once Chester found out where the button was, he kept on pressing it over and over! So the officer had to quickly disable it. He found it funny though.
Chester’s tube also came out again after he was sick. So we had to go through that all again at home. But he handled it a lot better this time and also got over it quicker after it was done.
We also got a new car, well a used one. We needed a 7 seater so that we can fit us all on the car at once and with the 3 car seats. It is a lot cheaper to run than the Volvo that we have, so we have swapped it for the new one.
We did manage to get out for a walk to the lakes. We know it is quiet there and not many people around so this is ideal. But we have to push the double pram and the wheelchair, as he gets very tired.
When Chester was diagnosed and we found out he had the Philidelphia Chromosone, we were offered to go onto the Trial called EsPhALL2017 / COGAALL1631. In the trial, everyone follows the same induction. And then after the bone marrow test you go onto the standard risk route or the high-risk route.
If Chester went onto the standard risk route, there were two branches to choose from; One is the standard treatment in the UK which is the European protocol EsPhall which is known for being very intense and at risk of severe side effects. The other is an investigational arm which is currently the standard treatment in America and is protocol COGAALL1631. This is slightly less intense.
The standard risk is very intense as it has higher doses than induction and more medication. It also would involve more stays in the hospital. The high risk would involve just staying in the hospital and having even harsher treatment and possible radiotherapy, followed by a bone marrow transplant. The treatment is more intensive than for standard ALL because the Philidelphia Chromsone makes the bad cells grow out of control a lot quicker. It also is trickier to get rid of.
If Chester did go down the high-risk route, we did also have good news and the results had come back from Aurora’s cord blood and placenta. And it was a match! If you want to read more about cord blood collection then you can here.
We could pull from the trial at any time, but being on it gives you an almost safety net to new treatments and there are more checkups/tests involved.
After a week we spoke to one of the consultants who gave us the results. And we were given really good news – Chester’s bone marrow is showing very minimal signs of Leukaemia. So this means he is responding well to treatment and would go onto the standard risk arm.
We then had a hard choice to make. If we pulled from the trial we would just follow the standard UK treatment, known for being very harsh and can make the kids very ill. But the outcomes have been good. Or we could stay on the trial and then the computer randomizes and makes a decision for us. We have no say and neither does the doctors.
So we would either get the standard treatment or get the one they currently use in America which is lower dosages and hopefully fewer side effects. But it had been tested in America for years on Philidelphia-negative people, and only tested for a few years on Philidelphia-positive people, so we were worried it may not be as effective.
But after speaking to a couple of consultants, finding out from the research team some more info, and looking into it a lot, it turns out they have been getting similar results from both. It’s the imatinib that treats the Philidelphia part of the Leukaemia, so the chemo part is for the rest. And over the years they had been making the chemo harsher and stronger, as it was the only thing that worked without imatinib for people with the Philidelphia chromosome.
After a long hard week of weighing up our options, we finally went into our treatment center on Friday and signed the paperwork to remain on the trial. It was then put into the computer and randomized.
Chester has been chosen to take part in the American branch of the trial. In the end after long hours of research and talking with different consultants etc, we decided we would like Chester to be on this one. So we are really happy with the choice. The outcomes are similar and relapse rates are also similar. So hopefully it will just be kinder to his body and also help children in the future. This type in children is rare and the chemo for them all is horrific and not kind at all.
As he has already responded so well and has also been so strong, we thought he wouldn’t need the harsher more intensive treatment anyway. But that’s not to say the one he is on isn’t harsh. It’s still strong doses and a lot of medications and chemo, compared to standard ALL treatment.
After getting the results we waited another week to start. This is to allow recovery and also for them to get everything sorted and in place. He will be going into hospital on Monday to be admitted for a few days. This is because it’s high-dose chemo that they have to monitor the levels in his body and check for reactions. But I will keep you updated next week.
