Kay was much better yesterday. Out of bed 5 times to walk the 2.5 metres to the toilet and back. She is now also more aware and knew that it was Tuesday. So much the better. No more attacks. One of the good things pointed out by the paper I read was that all children with itraconasol toxicity recovered between 4 days and 15 weeks after stopping the treatment. Today she was up to using the laptop provide by the hospital and is occasionally available on Skype or Messenger.
Yesterday evening 'our' pediatric onologist dropped by to discuss our problems with the treatment. I have to give him full points, he put both hands up and said mea culpa. He admitted that had more attention been given to our problems with Kay that the toxicity could have been discovered earlier. He said that the hospital had reviewed the protocol that Kay is getting and had decided to remove itraconasol from it because of the potential side effects with vincristine. So at least no other child will be exposed to the pain and suffering that Kay has had.
They will most likely skip the scheduled vincristine this week to avoid more toxicity problems. The specialist said that this was not a problem, it could be caught up with later. I gather that it is likely that Kay will stay in Nijmegen until Monday or Tuesday when the all-important week 5 bone marrow sample will be taken.
Our confidence in the medics and the wisdom of having Kay at home so early in the treatment has taken a rather large dent. It will take some work before Marion & I feel like carrying the responsibility for Kay at home, under the circumstances. Surely communications with Nijmegen will have to be improved.
A sad and disappointing story to say the very least.
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In my recent experience with medical experts there is no better expert than the parent/partner when it comes to knowing the patient and how they are reacting to pain. I am still furious with myself for not being more assertive when Liam had his haematoma and the helplessness I felt before his diagnosis. Knowing I was right all along does not help, just makes me realise that if (God forbid) there was a next time, I would handle it very differently.
ReplyDeleteLesley