Fright night fun

Well, the festivities were a bit thin on the ground this year, but we made the most of it anyway!

Caleb's school had a "fancy dress disco" on Friday evening, which he talked about all week so I knew we weren't getting out of it. I decided to take Adam as well, since he loves a good disco, and I needed the company! What didn't go entirely to plan was it taking 2.5 hours at the hospital that afternoon for his treatment, so instead of being home by 4:30 we got home at 6 pm (the disco started at 6:30pm). Yikes!!

The costumes and face paint were flying furiously and by 6:30 we had miraculously transformed into the Vampire, the Vampire's Bride (that was my instruction), and the Fu-man-chu Spiderman. Don't ask, his father did the painting there.

Anyway, here we are in our pre-show photo: all ferocity, stifled laughter and nonchalance wrapped up into one pretty awesome package.

Aberdeen: Be scared, be very, very scared.

Here's another of just Caleb with his vampire pose:

And one of Adam enjoying the DJ's fine efforts:

Frightfully fun indeed! Happy Halloween ya'll!

another post-holiday update

Well, it's been a good couple of weeks with lots of news to report.

The October holidays were a success, not least because of the company and help of my mom who is still here (until Nov 9). We had good weather, good enough to get out and walk a lot. The second week Caleb had football camp, which he enjoyed but was equally keen to finish. Hmmm, may not be a star footballer this boy, we'll have to find something else that catches his attention! Adam and I walked nearly every time to take and pick brother up...it's a good half mile to the Sports centre, so I would guess Adam walked in excess of 5 or 6 miles last week. Pretty good for a cancer patient, right?

Speaking of which, the doctors and nurses are amazed at Adam's progress, and particularly the way he's sailing through this current round of chemo. He's had minor (comparatively speaking) mouth trouble for a few days after each of his treatments, but nothing like what they were expecting. I am so proud of him--the energy that both his brother and sister display in their constant movements, acrobatics, exploration and attention to the world around them is mirrored in Adam through his being able to take a full whack of chemo, turn around and say thank you, go to school, come home and eat, sleep well, and do it all again the next day. I know it's only a matter of time until the bubble bursts, but for now we are glad.

The only shadow is the fact that once again Adam didn't "make the cut" on the last MRD test. His result was just slightly higher than the cut-off for continuing as is or pursuing more aggressive treatment, i.e. a bone marrow transplant. As always, Adam is a grey area for the doctors, but our consultant is wonderful and called several of her colleagues to confer. The answer they all gave was "continue with the treatment he's on for now", much to our relief. They feel that this gives Adam the best chances of survival and cure. The way Adam has been going I am beginning to feel that they might be right.

This last sentence of course reveals the fact that I've had my doubts, and who wouldn't if they are being honest? It's so weird to live at the edge of life, to walk a narrow ledge over a deep precipice with your son and know that at the end of the day you will either fall in or stay standing. It's one or the other, and at the beginning I was sure Adam wasn't going to have the strength to handle the treatment. Now, watching him take a blow and heal up and keep going, I'm feeling my hope grow each day that he might just do it. Seeing the docs perplexed at his good response makes my heart swell, and no matter what I'm so happy that he's coped this well so far and been able to go to school and live a (mostly) normal life.

Ok, final news: After two letters to Justin Fletcher, aka Mr Tumble, asking him to come to Aberdeen to meet Adam and his friends, I had a response. Yesterday a woman called from the Make a Wish Foundation asking if Adam would like to come to Surrey and meet Mr Tumble in person!! It seems that Justin called her and asked her to contact me, and said it would be best for the meeting to happen through these channels. WOW!! So now we wait and see how the logistics lay out, and hope that Adam is well enough when the time comes to make the trip. It would be so amazing, and I'm so grateful for the glimmer of hope that Adam might one day finally get to meet his muse. Thanks Justin--thanks Mr Tumble!!! :)

Dragon Moms

Two friends recently sent me the link to an article in the New York Times opinion section. It's by a woman named Emily Rapp, and it's about being a "dragon mom." I was not too quick to read it at first--lots of people send me lots of links and even with the best of intentions I don't have the energy to read them all. But when it reappeared in my inbox this morning I decided to have a look. And I have been thinking about it ever since. (if you want to have a look, the link is obviously in the first sentence there.)

In this article Emily is talking about parents of terminally ill children. But I think it is fair, and totally makes sense, to include parents of profoundly disabled children in these reflections. At the moment I definitely have the latter. I may also have the former, but that is as yet undecided. So that makes me a Dragon Mom too.

I'm not going to say any more about it just now--it's all too raw and personal for this kind of forum. What she says actually just scratches the surface of all that is real and brutal and honest about our humanity, how we deal with the life we are given and the people we are given to love. If it were not for my faith I don't know how I would survive. As it is, the one thing my faith gives me, and most recently too, is the certainty that it's ok. It is good to struggle, it is good to admit defeat and despair because not only are these universal emotions: they are redeemable.

addendum

I just checked Adam's blood pressure again and it's much lower. This was with Dad holding him still of course, singing to him at the same time. So now we know who's doing the blood pressures from now on!

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.