Decision made!

It's 2am and Adam is sleeping beautifully, I not so much, but that's life for the adult accompaniment to the hospital night shift.

The nurse comes in to give Adam's antibiotic through his port and halfway through it becomes apparent that something is wrong: the fluid is not going into the blood stream like it is supposed to, it is going into the surrounding tissues. Suddenly Adam is jumping all over the bed and we know we have to take the needle out and alert the doctors. Luckily we got to go back to sleep (Adam did) and wait until 8am for our main doctor.

He checked out the port site and said it looked better, try putting a needle in. This time though, it seemed to hurt Adam even though the fluid was going in better. Called the doctor back and without a moment's hesitation he said "Take it out!" The nurse brought the "Nil by mouth" sign (i.e. no eating) just in time to whisk Adam's breakfast out from under our noses. Quick logistical negotiations: a nurse will stay with Adam while I rush back to collect the baby from Daddy who has to rush to teach a class at 9am. This in rush hour traffic in the rain--luckily we live close to the hospital!

Adam finally went in for his op at 12 noon, the same time the baby went to sleep for her nap. I got a moment to eat breakfast/lunch and read the paper before the circus started again. Adam's op was successful--they removed the port and put an IV cannula in his right hand. We are to hold on to this cannula for two days if possible--Adam needs one more dose of chemo tomorrow and two days of IV antibiotics. If the cannula comes out after the chemo, well so be it and that's us done. Even if it stays in we are free to go by Saturday. That's a sweet deal--and even better to know that the one thing causing all the trouble with infection is now out of his body, even though that's also the one thing we need most to continue with his treatment. We'll cross those other bridges later, i.e. do we put another port in or continue with IV access for each monthly chemo treatment? For now, we get through tomorrow and be ever so thankful we have made it to the end of the intensive part of Adam's treatment protocol.

I might add it's pretty hard to not think about "accidentally" dislodging the cannula tomorrow afternoon and oops, I guess we have to go home now! :)

Daddy arrives at 4:30pm and I walk home with a tired baby, who again mercifully sleeps in the buggy while walking. I collect Caleb from the school friend who took him home with her and her three children. We walk home in the rain, each taking turns to console a crying baby who just wants out and fed. We arrive home to find...my house key is on the key ring in Daddy's pocket at the hospital!! Sigh...not the first time today I've thought "Thank GOD for mobile phones!!" :) Daddy to the rescue...dinnerbathandbed in quick succession. A quiet house at 9pm.

This is one for the record books, and, strangely enough, a good day all around.

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!

Whew

Just wanted to say that we are officially on the mend from dose number four: six days in and Adam's numbers are starting to go the right way again. This one has been the hardest, with his mouth and the skin on his bottom the hardest hit. We rapidly assembled a host of salt water, bicarb, gels, foam spray, creams, lotions and special pain relief of the opiate variety to treat Adam's pain, and it seems to have helped him get through. Not much hope that dose number 5 won't send him over the edge again, but at least we are prepared and at least that's the last one.

Now let me brag for a minute: the doctor today said once again that they are impressed with how well Adam has been doing, and with how much he's taken during this course. Adam has been able to tolerate more doses so far than many children do, even those without Down Syndrome.

So there: if you're going to have an extra chromosome, you might as well have it made from steel.

correction

I have to apologise...I may have been misleading in that last short post. I do not mean to mislead my dear faithful readers, so let me tell you the story:

Many of you know that Adam's favourite TV character is Mr Tumble, aka Justin Fletcher. Justin is a man kind enough to write back to fans when they send a message on facebook, and also kind enough to give the address to which said fans should write when they want to request a visit. I wrote and did not hear back, so wrote again and included my phone number. I then received a call from a woman at the Make-a-Wish Foundation asking for Adam's details so they can begin to organise a trip for him to meet Mr Tumble (Justin) in Surrey, England, sometime. This all happened because Justin called her and asked for her to pursue it.

He (Justin) then had a bunch of Mr Tumble stuff--magazines with fun activities and stickers (Adam LOVES stickers!), DVD's, cards and a picture of himself, much of which was signed by Justin/Mr Tumble--sent to our house, and all this arrived last Tuesday. Needless to say I was amazed and grateful a second whole time, so I tried to get a picture to send to Mr Tumble to say "thanks". It was not a great shot as Adam was really grumpy that day (and who can blame him I ask?), but the result is what you saw in the last post. I think he looks solemnly pleased :)

At any rate, things continue here on a fairly even keel. Adam received his 4th dose today, and we should be seeing the effects of that in a few days, by Saturday at the latest. The doctors are amazed that he has come this far in this particular part of the treatment. He's been enjoying school and his bus rides to and from, though he is still refusing to keep a hat on in our late-Autumn dropping temps. The man is tough, I tell you!

I went to Caleb's parent-teacher conference this evening and his teacher had nothing but good things to say about him, his conduct in the class and the speed with which he is picking up language and maths. I do think he might have my brain for math, but also his daddy's brain for concepts and liking to know how things work. It's a winning combination and a sweet boy to hold it all together.

The baby, well she is practicing her standing up and her new "Ab. Ad. Ab. Ab. Ad." during the day AND the night just now, enjoying several opportunities to call me in and politely ask to be laid down again. "Ab. Ad." It's sweet, and wonderful to see her come on so much and enjoy a little rough play and new foods and the attention of strangers everywhere she goes. If you are in Aberdeen and walk past the Starbucks at Marischal college and see a gorgeous little pink puff lady in the window, it's probably Agnes! :)

That's all for now. It is, as usual, bed time for this mama.

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!!! :)

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? :)

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!

The end of Round One

Today is Monday, a mundane enough affair by most people's standards. In Aberdeen it's cold, grey and a wee bit rainy, also pretty mundane for the people who live here. For us, however, it's a fairly momentous day: it marks the last day of Adam's first round of chemotherapy and a rest day.

Yes, you read me right...it's been a rest day. A fairly restful day too, for that matter, especially since the aforementioned weather has limited our choice of activities. To be honest, I've struggled to know what to do with ourselves, as each and almost every day for the last 5 weeks has been oriented around a trip to the hospital for something or other. Not to have to make that trip has left me a bit, well...disoriented. Not that I haven't enjoyed it, and not that I haven't caught up on laundry and cleaning in the free time. Adam watched a bit of his favourite movie Cars, and Caleb had a go at another day of football camp. Agnes...well, she ate, slept and squealed! :)

Tomorrow begins Round Two of chemo, complete with all new drugs, an all new routine and the same old bone marrow aspiration and lumbar puncture to kick it all off. The docs will be doing much the same for the next four weeks as the last five: pounding Adam's body with toxic drugs hoping to kill off even more of the leukaemia cells, watching his blood counts rise and fall, and measuring it all at increments with needles and blood samples.

What has to happen now is up to Adam's body really, and up to the Lord ultimately. The drugs need to kill off as much leukaemia as possible and bring Adam closer to remission, if not all the way. But his body also has to hold up under the strain and this is the slightly more worrying part of the equation. The first round took a toll, evident in the constant slight tremor of his hands, his pasty face, his inability to walk pretty much at all, and his hair that is falling out fast now. We hope and pray that the second round doesn't do worse, though at this point I suspect that's a futile hope. It's all a guessing and waiting game, not exactly my forte but it seems one that I'm destined to practice a lot for the foreseeable future.

We'll keep you posted how the numbers look tomorrow, and if there are any new developments. Adam had a fainting spell over the weekend that we hope not to repeat, though on the plus side he's off the steroids and is finally sleeping better. Now if only I could say the same about his sister....