The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Tuesday, December 27, 2011

Expect the unexpected

I started a post earlier today that I had to pause, and now it seems I have a different one to write anyway.

Adam has had to go into the hospital tonight for what sounds like a chest infection, though we will only know that for sure once the test results come back. In true Adam style he's had a cough for weeks and was probably having fevers all Christmas weekend, but we didn't know it because he wasn't warm and was still acting normal. By normal I mean eating everything in sight, plenty of energy and the cheeky Adam mood to go with it. I only checked his temp tonight just to see what it was, and when it was well over the limit we had to take him in (the limit is 38 and it was 39.4--normal is 37!)

He is wheezing and breathing harder than normal, but otherwise still in good form. When I left Dad was feeding him a second dinner and they were watching Mr Tumble, so by Adam accounts it is the perfect evening! I only hope for their (Dad's!) sake they can sleep some too.

Otherwise we've had a lovely Christmas and enjoyed some quiet time with family and our friend Miss Leah, and also some time with friends. The weather has been great so the kids got to go out and play in the backyard lots too. Adam is meant to start his next block of chemo on Thursday, and that means going in every day for treatments for a week, so the timing of being in is not as bad as it might have been--we have every reason to be grateful and will keep a positive outlook. Thanks, as ever, for your prayers and support...I will be sure to keep you posted.

Monday, December 12, 2011

Raise your glass!

Last Friday one of Adam's doctors came and told me the good news: Adam's MRD test results had come back and he is now clinically negative--there are no detectable Leukaemia cells in his bone marrow anymore.


So this means two things in particular for us just now. One is that the chemotherapy has been working and has done what it is supposed to do. And the second thing is that now we are on course to finish the intensive treatment at the end of January and go on to maintenance without further chemo.

This is good news, obviously, but as usual there is one shadow: the doctors can't make any predictions on Adam's future because he wasn't at zero when he should have been. Usually they expect zero to happen at the end of induction, and that is what all their predictions and statistics are based on. Because it took Adam longer--even though it's so great that he got there at all--means they don't really know what to say about his long term chances. Of course that doesn't really matter at this point, and what does matter is that we don't have months yet to go.

Which is good because I'm only finally getting around to writing this post during one of his steroid-induced insomnia patches at 1:23am!!

Good night (hopefully!) all, and thanks for your prayers and support!

Sunday, December 4, 2011

The adolescence of chemotherapy

We have now officially entered "Delayed Intensification", the last (hopefully) stage of Adam's intensive treatment before the maintenance phase of the protocol begins, IF all goes well.

This was always heralded as a heavy block, with several "big guns" being used in combination with other chemo drugs, eight different drugs in total over the next 8 weeks. Adam had another lumbar puncture on Thursday, and the initial results from that were good: no Leukaemia cells in his spinal fluid, no cells apparent in his bone marrow. We are still waiting for the results from the MRD test that they send to Glasgow, they should be back next week. Those will reveal a little bit about the progress that Adam has been making, but they are not "decision material"--the biggest decisions will come at the end of this block of chemo (end of Jan).

On Friday I took all three kids up to the hospital for Adam's infusions. The whole process lasted more than three hours--which you would think with three kids in the same small room would be a nightmare. It wasn't--it was actually sweet time together: Agnes crawling around playing with various toys and using the bed rails to pull up to stand, Caleb and Adam watching TV and tucking in to corned beef hash provided by the hospital tea trolley. Caleb played hide and seek with Adam's consultant, another doctor held Agnes while I helped Adam's nurse get the infusion started. We ate, played, sang, talked and, hopefully, remembered this time. The memories of this time is the one thing that I don't want to lose--come what may this is our life right now and I want to embrace it fully.

Three hours and ten minutes later we had embraced it and were ready for BED! :)

Adam has also restarted his Dexamethasone, a high-powered steroid and building block of the chemo protocol, at nearly double the dose of before. So far, and this is still very early days, it has made him like the stereotypical teenager: moody, emotional, hungry and sleepy! Bless his heart, he is 8 going on 15 right now, but we are hopeful to make it through the week as smoothly as possible. It won't be too hard if he continues to sleep 12 hours a night!

We are well, for now. Thank you all for your support and prayers--I will update again as soon as I have anything useful to say.