No pressure

So this week has been pretty full, not least because the boys are home for the October holidays. Adam has to have toxicity checks every other day, starting this past Monday. These checks are designed to make sure the levels of chemo drugs don't go too high in his blood, and that his body is able to cope with the doses. They can either be done at the hospital or at home, though having tried one at home we are currently opting for the hospital. Funny how anything becomes an excuse to get out in this house!

Every two days someone checks his blood for white blood cells, neutrophils, haemoglobin and platelets, his urine for all sorts of things but mostly blood in it, his blood pressure (which shows how his kidneys are functioning) and his mouth. This is because methotrexate affects--read kills--the cells of the digestive tract, starting from the mouth all the way down. On Wednesday Adam was starting to show some areas of breakdown in his mouth, and it looked to be getting worse yesterday morning. Today, however, it is amazingly better, and so far he's eating just fine. We attribute this to the salt water rinses we have been doing, highly recommended to anyone else suffering mucositis from chemo. The rest of his numbers are good too, for now--except his blood pressure, curiously. It was high today, and now we have to keep a close eye on it to see if it is high or if it was a random occurrence.

Which brings me to the question of the day: Have you ever tried to get a blood pressure from an autistic child who doesn't really like to be touched? Even better: have you tried to get a urine sample from that same autistic child? Have you tried to do it daily? Both of them daily? Many times?? Well, now you know why I bought a bottle of wine at 10am today.

So that's our fun for the next two months--every day we have to get a blood pressure and a urine sample from Adam, who neither likes to be touched nor pees on command. Hmmm...this may just test my creativity to the limit. On the other hand, I will be putting it on my CV and hope that in the event I actually work again someday it might count for something!

After the morning (and before the wine!) we went to our favourite woodland walk, the one with the "loop-de-loops", and entertained ourselves by running full-pelt along them like a rollercoaster. If you have had the morning like I described two paragraphs above, you would have enjoyed it too! :)

finally

Apologies for this being much later than it should have been...

Well, Adam has now officially begun his third round/fourth month of chemotherapy. This one is called "Escalating Capizzi", named after a prominent researcher who did a lot of work developing this particular protocol to treat ALL. It will run for the next 8/9 weeks, depending on how Adam does, and if he needs a break at all it will take longer. With the completion of this block of treatment we will be over the midway point, the end of the intensive phase of treatment finally in sight. However, they don't call him "escalating" Capizzi for nothing.

This block is based around a drug that they give in increasing doses until, well, until the person can't take any more, i.e. until the side effects are so bad they couldn't handle any more. I don't know about you, but I can't think of anything that sounds worse, though the reality might not be as clearly awful as it sounds. The drug, if you are inclined to look things up, is called "Methotrexate". Adam has already had several doses intrathecally, which means as a shot into his spinal fluid, basically to prevent the cancer from spreading into his CNS (central nervous system). So far it still hasn't spread which is great.

The initial blood work from Friday said that there are no more Leukaemia cells in Adam's bone marrow, so he is still in remission. Everything looks good to our doctors here, but they have sent Adam's blood off to Glasgow for a special, more thorough test called a "Minimal Residual Disease" test which will tell us in more detail how well he is doing. The results from that should be back by next Friday. If it's anything like last time, it will be a bit of an anticlimax, in that it will just confirm what the docs here have already said.

So we press on, get to know Capizzi and hope and pray for Adam to not have such bad side effects that he suffers and his treatment is hugely delayed. Up to now he's only missed four half days of school, which is much better than I had hoped for. The kids have two weeks off school anyway now, and when they go back it would be great for Adam to join them. Of course, Caleb has a sore throat and all the kids are sneezing, but what else do you expect when it's October in Aberdeen? :)

The Cat's Meow

I've begun to feel a little like the cat with the proverbial lives...

Adam is coming up to start round 3 of chemo soon. It was supposed to be last Friday but there was a miscommunication, which after it was cleared up the second date would have been tomorrow. However, his white blood cell count is still low enough that his doctor wants us to start on Friday instead. Barring infection or other obstacle, of course.

This is the one I've been dreading, so I'm happy for the reprieve, again. But you can only gear yourself up mentally and emotionally for something like this so many times...

I know the timing has always worked out before, and it's certainly no coincidence that the day Adam is now to start is the boys' last day of school for two weeks. The October holidays used to be the bane of my existence, this year it's a welcome space into which we can retreat and deal quietly at home with whatever is coming.

Bring on Friday.

In the blood

I’m sitting in Adam’s hospital room once again, thinking. (I’m not being pompous-- there’s just not much else to do during a four hour transfusion to be honest!)

I’m watching him watch Mr Tumble as the thick red liquid drips slowly from a bag into an IV line, and from there into the port in his chest. I’m occasionally interacting with the nurses who come into the room to check his temperature, pulse and blood pressure. I’m chatting with friends who pass by in the hall. And I’m thinking about the death of self-reliance.

It really is true that “no man is an island”, and yet how often do we--do I--internalise and reflect on that fact, allowing space to be deeply grateful for the help that we receive, whether or not we are aware of it, that enables us to live?

I'm aware that this has been true from the very beginning of Adam’s life—he wouldn’t be here if a midwife hadn’t helped us to deliver him onto our dark green velvet couch in Germany. He certainly wouldn’t be alive if it weren’t for doctors, nurses, hospitals and lots and lots of medicines and machines. And he wouldn’t be who he is, and WE wouldn’t be who WE are, without so many others: therapists who patiently teach us how to overcome and work with the aversions and delays resulting from that well-known extra chromosome, researchers who have given years of their lives to perfecting chemotherapy regimens, friends who have offered help at many necessary (and unnecessary) moments, family who have flown over to stay with us for weeks on end, random people who take time to donate blood, teachers who persevere 40 weeks a year, ministers who visit and bring communion, actors who perfect beloved television characters that provide HOURS of entertainment, Christian soldiers who pray, pray, pray around the world…the list could go on forever. Really.

Someone I don't know gave the blood that is making him feel better just now. People I certainly don't know well pour over his medical notes regularly, making decisions about what will be best for him, what will hopefully help him get well. Sure, you could argue it's their job, but it's a job I couldn't do, a job without which we would all be lost.

I hope I’ve said it before, but if not I’ll say it again: Thanks, to everyone who helps us to get through both the good times and the not-so-good. To everyone who helps, cooks, chats, listens and prays. We are grateful.

Counting the numbers

As an addendum to the other day...

Adam has been much less grumpy in the past 24 hours, back to his normal sweet self (mostly). Just in time for his next chemo dose which he received this morning at 11am!

They took his blood as usual, and this afternoon called to say that his haemoglobin is still low and he needs a transfusion. To put "low" into perspective, I googled "normal haemoglobin for children" today and found that the values for a normal child are 11-13 g/dl. Adam's is 5.5 g/dl. That qualifies as low in my book too. Sheesh, no wonder the boy has been grumpy!

Tomorrow morning we go back for the transfusion, and from there something fun to while away the rest of the afternoon. But maybe not buggy racing this time, I mean the boy is a cancer patient after all. :)

Choose your own adventure

When I was a kid I used to read those Choose Your Own Adventure books. You know, the ones where you read a page and make a decision about which way to go at the bottom and it directs you on to the next part of that story. In theory, every time you read it you can create a different story just by changing one of your choices. I never worked it out statistically, how many different stories were possible. I just remember being as fascinated by choosing my way to the "happy ending" as I was by my choices leading me to the abrupt "too bad, you're done" ending.

In actual fact, what I liked about those books is what you don't get with real life: the option to flip back to the front and start again if your story is not going how you want it to go. Real life is marked by choices, and those choices do influence our story for sure, but we still start every day exactly where we left off before we went to sleep. We don't go back, we don't start again. I can be as different tomorrow as I want to be, but I still take all I've "read" so far along with me.

I started thinking about all this last Friday, when I was talking to our neighbour whose father recently died after battling with cancer. She was teary and fragile, but equally pleased that in the last few weeks before her father's death they had done a lot together, made the most of their time. She had no regrets about the end of his life.

I of course started thinking about Adam, and more clearly about how we are spending our time together. I don't know anything about the future for Adam, only that right now, in this moment, I have the choice to spend time with him meaningfully, to live well so that no matter what, ten years down the line I have no regrets. I want this as much for myself as for Caleb and Agnes, who won't be thinking about the future now (blessedly!) and yet will still have memories of this time in our family's life, maybe more so for Caleb than Agnes. I want Caleb to think back and remember that we did some fun things as well as the "boring" old hospital visits. I want him to remember Adam laughing as well as shouting, crying and laying on a hospital bed.

I wasn't trying to be morbid, only to shake myself out of a little rut I'd gotten into, of getting through days rather than living them. So we took the bus and went tubing down the dry ski slope on Saturday, had fish and chips and ice cream and then Adam and I, keen to keep the party going, took the bus to a playground and hung out on the swings while watching huge black clouds bearing down on us (mercifully staying dry!) I had to carry him much of the day, as he was tired. I had to wash his hands lots and keep putting his coat on when he got cold. But we had fun.

Sunday we went to church, watched Alice in Wonderland together while the baby slept, then went for a coffee and a walk in the forest nearby. Adam rode in the buggy most of the time, holding on to rocks and throwing them into the puddles we passed. Brian raced Caleb on this mountain bike course we like, hurtling Adam at breakneck speed along the "loop-de-loops" (don't worry, he was strapped in!) They stopped now and again and waited for momma and baby, and were off like a shot once we caught up--I shouted the obligatory "be careful!" and smiled to see Adam's wings and his smile, thoroughly enjoying the ride.

So we chose our adventure this weekend, we spent loads of money and tired ourselves out and it was good. I for one will look back someday, from whatever vantage point, and say that was time and money well spent. And whether or not this weekend is as flashy, I'm grateful for the reminder that I can choose to spend it well.

p.s. here are pics to prove that we survived!

sweaty family post-tubing

she does love her front pack walks!

p.p.s: just so you don't think I'm all romantic and stuff now...two days after our epic weekend I got a call from one of the nurses at the hospital who asked how Adam was doing. Fine, I said. Why? Well, it's just that his haemoglobin (red blood cells) is 58, so we wondered if he's ok. I didn't tell her about the tubing, and I definitely didn't mention the buggy racing either!!

Holding Steady

I'm glad to say I don't have much to report from this last few weeks. Adam has continued with his treatment as planned, without any hiccups, fevers, port troubles or mishaps. He is eating and drinking well, walking lots and generally on good form. He has gone back to enjoying sitting and watching the lift (elevator) doors, so we spend most of our time at the hospital doing just that. We don't know much about numbers, but the next round begins on 30/9/2011 with a bone marrow aspirate and lumbar puncture so we will know more then how he is doing in terms of his response to treatment.

We are trying not to think about the next 4 months apparently being harder than the first 3 were. Instead, I'm trying to focus on how much we've learned and how much better equipped we'll be this time to deal with the side effects that arise.

One thing that helps me not to dwell on it is the fact that two nights in a row now Adam has pooped in the potty!!! As I told Caleb, EIGHT YEARS of nappy changing is cause for some serious celebration! :) Not that we've really achieved too much yet, but I know we're on the road. Exciting indeed.

Everyone else is doing well, so I'll leave it there for now. More soon, and hopefully news in the next few weeks on Adam's progress, visa applications, toilet training and other exciting developments. Watch this space!