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.

Friday, January 27, 2012

Highs and Lows

Well, mostly highs to be honest, and high time to share them too!

Just thought I would give you a glimpse of some of the more fun, normal moments of our last couple of weeks to show that our lives are not totally absorbed by the hospital.


video

This was Agnes and Caleb playing together one afternoon recently, while Adam was watching--wait for it--Mr Tumble. They are so cute--she is really "talking" now and walking lots and enjoying humour. Caleb is doing well too, and is such a big help around the house. He even helped me decorate our cupcakes, as seen here before the plate accidentally tipped over sideways onto his shirt!!


One major recent step forward with Adam happened during his recent hospital stay when he was tentatively diagnosed with reflux and put on a medicine called Omeprazole. They haven't conclusively determined if he really has true reflux, nor is it clear whether it's him or caused by all the other drugs he's on, but since they started this anti-reflux med he's been sleeping much better and seems a lot calmer. Poor soul, just glad that they found it--there's always a silver lining to everything as they say.

Today as we were leaving the hospital following Adam's routine lumbar puncture he stopped off into the room next door, leaned up to where a lovely Granny was holding a tiny little baby in front of her, facing forward, and gave him a gentle kiss on the mouth, complete with "MWAH!" as Adam does. Truly sweet, as if he's passing on some of his hospital zen to anyone he thinks needs it!

Finally, we've been swimming again! The International School of Aberdeen has opened their pool to families with children with cancer on a Saturday morning and we've gone two weeks in a row now. It's such a great thing, and the high-school kids who volunteer and work with the kids who come are a treat to get to know. I'll try to take and add some photos of their session tomorrow soon.

That's it--hope we brightened your day just a little bit for once!


Wednesday, January 25, 2012

addendum

I've been thinking about that hurried post I put up earlier--just shows I should not try to post anything in the 7.5 minutes I have before Agnes decides that "up" is the only word she knows!

I don't want to be flippant, and I felt like I was about Adam doing so well on chemo. I watched him tonight, and he looked fine until he started laying on the floor, refusing to get up and eat his snack and when I made him sit up then he threw a magnificent fit. We aborted snack, went in to brush his teeth and he climbed into bed very happily after only two bars of his bedtime song. Hmm, turns out he was tired. At 7:45pm. Hmm. That's odd.

SO, I know that he feels something--if not bad, then different--and that his lack of expression only means we don't hear about it often. But the boy has never lacked for body language, or facial expressions, or even Makaton when he's feeling full of steam--he does tell us what he needs and we do know how he feels most of the time. I am grateful for what he's been able to do and prayerful for those many people we know out there, with cancer and without, who have even more to deal with and do it gracefully. They are my inspiration when things are rough in our house--and we all need inspiration.


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!!

Friday, January 13, 2012

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.

Wednesday, January 11, 2012

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? :)

Monday, January 2, 2012

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.