What you don't see, revisited

Well, that's Adam back on track with his chemo protocol, after his month long RSV-induced break. He's been on great form, looks good and other than a bit of morning nausea/vomiting has been doing great.

It was a crazy last few days though, starting with all day at the hospital last Friday with both Adam and Agnes. Try to imagine the difficulty of sitting in the room with Adam, stuck to his bed for five hours straight, and at the same time walking up and down the halls with little girl who just wants to practice moving. For five hours straight, did I say that? Well, it was tough but they were both very good and the play staff helped out a lot. Adam, for all that he's had trouble in the past with being able to sit in one place for any length of time, did not even attempt to leave his bed while he was hooked up to the drip. For five hours. I was amazed and grateful. It did take nearly 320 minutes of Mr Tumble to help him with this accomplishment. How long is 320 minutes Brian asked when we got home? More than five hours I said!

So, that was his long infusion of Cyclosphosphamide, the last one, and the last four days were his short Cytarabine infusions, each taking only five minutes. We even made it from school to hospital, back home to drop off the car and walked Caleb to his swimming lesson by 4:30pm on Monday, to his great delight! He is really enjoying the pool (though it could be warmer!) and I wanted him to have something for himself this term, no matter how difficult the logistics would be. It looks like only this Monday and next that we have to rush a bit, otherwise after his next lumbar puncture on Friday, his next set of four cytarabines, and two other Friday infusions Adam will be done with the intensive bit of his protocol!! That's 10 February if you want to mark your calendars--as long as we don't have any other setbacks. From there it's maintenance for 18 months. No need to mark calendars for that yet!

The question that has been on our minds lately is why is Adam doing so well on chemo, better than most other children we've heard about or met? Meaning, how come he has had less side effects, less debilitating sickness and joint pain, and missed hardly any school? The RSV event was pretty much par for the course, just very inconveniently timed and lengthy. I guess the only answer is that we don't know, but we are grateful. It could be his makeup, something to do with his Down Syndrome, we don't know. Lots of things--drugs, viruses, immunisations--have never affected Adam in "normal" ways, and that has been both good and bad for him. So it stands to reason that Adam would not react in textbook manner to chemo, but I find it hard to believe that it would be this good overall.

Having said that, the month that he was off chemo we had the chance to see "pure" Adam again, albeit partially hidden behind an oxygen tube. He was sweet, talkative, helpful and cooperative. And over the weekend as the chemo kicked in he was a little more aggressive and tearful at times. So it obviously has an effect--maybe the question is better put, how do I tell how much Adam is changed by chemo? I was glad for the reminder that though subtle, Adam is anything but normal just now, even on his best days. But that month long break made me SO look forward to having his sweet normal self back in due time--cancer free, of course!!

Good news finally!

Well, after 17 long days we have finally taken Adam home for what we hope will be the last time in this most recent round of hospitalisations. He is over his infection, done with wheezing and nebulisers, has been to school two days in a row now, and is to all outward appearances our happy, healthy little Adam again.

The reason I hope this will be the last time is that I jumped the gun a little bit and took Adam home before the doctors were fully convinced that he's medically safe, before they were quite ready to send him home. That is because Adam has still been requiring oxygen at nights to keep his oxygen saturations in the blood up to a normal level. It's been like this for a week now, with him well during the day and still needing a trickle of oxygen at night. But last night the trend was clearly up--by morning, when he was still deeply asleep, his numbers were at 88% instead of 80%. That, my friends, is good enough for us.

We don't make these decisions lightly, but we have had to make them many times in Adam's short life. Always it's a mixture of trend, how Adam is in himself, where we are physically and mentally and what the family needs. While we readily admit that Adam's safety is of utmost importance, so too is letting the family be together for dinner and breakfast! For many boring and detailed reasons I think this is genuinely a trend upwards for him and not some underlying problem, and we believe he is safe. But they did send me home with a monitor just to check, and strict instructions to come back if they are too low!

And, as I remind myself regularly when I feel badly for disappointing a doctor, Adam is alive because I disagreed with a doctor on day 4 of his life, so sometimes sticking to your instincts is a good thing.

From the inside

Darnit, I had really hoped to be writing this post from home, but we're still in the hospital.

Adam is doing really well, and has even been off oxygen--in air--since 5:30pm last night. I'm writing this at 10am now, so that's a lot of hours in air with acceptable, even good, saturations. There's only one small detail: he's been awake.

That may seem like a small matter, but the fact is that we can't go home until Adam can demonstrate his saturations stay above 88% in air when he's asleep. Even the most healthy person drops their sats when they sleep. We naturally breathe slower and shallower at times and our oxygen levels dip down, for a bit. Then, when our brain registers that they are low we all take a deeper breath, turn over or even surface and the sats go back to normal. For Adam to go home he has to show that he's able to do that himself too.

Last night we had high hopes, the highest unfortunately, but once Adam went to sleep his sats dropped to the low 70's and stayed there long enough they had to turn the oxygen on again. It went that way all night. So for now at least going home is not an option. We are hopeful that this is just the last leg of healing and soon Adam will show the doctors what they want to see, but there is no timing on it, and as with before, wishing won't make it happen any sooner.

But, hey, we'll wish anyway won't we? :)

Marking the Time

Happy New Year to one and all!

I was going to write a post last night but I was too depressed to do it, and to be honest tonight is not much different. But since time rolls on I might as well roll with it and do what everyone does or at least is tempted to do at this time of year: mark the time.

A new anything always seems to bring with it two things: the remembering of what was before and the looking forward to what is/might be coming. As I look back on the second day of 2012 (wow) I can honestly say I feel like the last half of 2011 should be thrown in the toilet. And, by the looks of it, the first week at least of 2012. I was really hoping that after all the trauma of the summer, with Adam's diagnosis of Leukaemia looming large in the forefront of everyone's minds and memories, we could end the year on a high note, in relative health and a night of good music with my husband to boot. But no, Adam's admission to hospital a week ago put an end to those hopes and now I am left with facing the fact that I can't wish or work or medicate or complain this into anything other than it is, a virus that is still causing Adam lots of trouble a week on and shows no signs of abating.

We have been praying, and we are still hopeful that Adam will turn a corner soon, but we ended up ringing in the new year on the medical ward amongst several other semi-hopeful families as I had desperately hoped we wouldn't. We have had some good times in our week though, like Adam and Caleb getting to colour, watch videos, snooze and play together and Mommy and Miss Leah watching scary movies at nighttime after bathing the other two and putting them to bed. I will always remember singing Adam to sleep two nights in a row and him handing me my glasses in the morning without me asking. I will also remember watching him leaning over things struggling to breathe. I think the hardest thing about all this is that Adam is a TANK. Anyone who knows him knows he doesn't stop for anything. If he stops, if he lays down or sits still, or looks flat, it's because he's really hurting. I don't like it because it seems to lay bare that everything we count on in life is subject to fail, including Adam and his strength. I count on his strength to get through chemo and beat his cancer--I expected that if something were to happen it would be part of that whole picture, NOT some random virus that knocks him off course.

But of course that's to put our trust in people and things rather than in the Lord. Yes, I know this too. And even while I rant and rave against what the Lord has had us all endure over the last half of the year, I also know that we welcomed our little angel Agnes Sophia Rose into the world during the first half of the year. And we also received the love, help, food, comfort, company and support of SO many friends and family during the whole year. We moved into a fantastic house and Adam joined the community of a wonderful school this year. Caleb learned to put letter sounds together to make words this year. Agnes learned to walk. Mom learned to sew (again!) and Dad spent his first nights of many in the hospital with Adam. Adam too learned to "talk" more and sign more, thanks in large part to Mr Tumble. In fact, Brian called me not too long ago to say that Adam had spontaneously signed and said "Adam loves Mommy. Daddy." So good can most definitely come out of bad, and our groaning hearts can most definitely find and dwell in peace if that is what they are willing to keep hoping for.

Well, here's hoping I don't write in a week and say we're still in! I hope and pray instead that Adam can breathe easy and normally soon and that he can start his last block of chemo asap (and the delay won't have had any negative effects on his cancer levels). I also pray that I will not measure what we receive against any random ideas I might be tempted to entertain of what we "should" receive. And my one resolution this year? To remember to be grateful more than I complain.

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.

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.

HOORAY!!!

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!

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.