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!!

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!

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.

Re-port (get it?)

Adam's blood counts returned to "normal" earlier this week and his fevers subsided, so he was discharged home from the hospital on Tuesday. We had one blissful day off, and wouldn't you know we spent it dodging the pouring rain! That was a short reprieve, however, and today was back to the grind.

It has been a long day, filled mostly with fasting and watching elevator doors, our increasingly familiar pre-surgery routine. Today he was in for his port to be fixed, have a lumbar puncture and restart chemotherapy with a drug called Methotrexate injected into his spinal fluid. We waited until 3:45 before he was called to surgery, and into the early evening before he came back. I marvel at how difficult it still is to send him in for surgery, even when we've done it almost weekly for nearly two months now. I do hate waiting, and this last few weeks has been a crash course in it...you would think it gets easier, but really it only gets slightly easier to mask how not easy it is! Waiting for doctors, nurses, surgeons, pharmacists, medicines, procedures, elevators--it all makes me a little bit crazy!! Mostly I find I am waiting for information and (hopefully good) news that comes slowly, in drips and drabs. Add in a sweet wee boy who doesn't understand why he can't eat, why he has to get another needle in his arm, why he has to go to that room again (theatre), why he has to take medicines that make him feel bad...it's tough to explain and even tougher to live.

Back to today: the surgeon could not fix the port, and ended up putting a new one into the space under Adam's left armpit. It's not the most convenient of sites, and Adam seems quite sore, but if it works that is all that we can ask. So far, so good. A spot of dinner, some pain meds, and an hour or two to make sure he's fine and the boy will come home again for another good night's sleep in his own bed. Tomorrow starts four days of IV infusions and then two days off.

California Oma arrived today, and was immediately plunged into the deep end, taking a taxi to the hospital, taking turns on the playground with one child, then another, then waiting for Adam to come back while I dashed around town to swim lessons, hang out washing, and come back. Whew. We are tired. If that's not a good way to deal with jet lag, I don't know what is!! We are surely grateful for the extra hands, and hopeful for what the next three months of her visit will bring.

Vertigo

Whew, don't even know where to start about yesterday, it was such a topsy turvy day...14 hours spent in the hospital, split fairly evenly between Brian and I and our necks, which we have decided take the brunt of the hours spent laying around with Adam. The long and short of it...

Adam was supposed to be in the hospital at 8am, "fasted" (meaning having had nothing to eat for at least 6 hours) and ready for his bone marrow aspiration and lumbar puncture, the grand start to the new block of chemo. Unfortunately for him, and scarily for us, the incision site where his port was inserted had started to open up. I'll spare you the gory details, but it was obvious they could not do the procedure, not straight away at least. It took four hours of waiting for a surgeon to be free, and Adam eventually went to theatre at noon where he had the two "normal" procedures and his wound fixed. The surgeon stitched it up, taped it up, and put a clear plastic dressing over the whole thing. Said to leave it alone for 7 days...sorry, doctor, did you say 70 days?? I'm not touching that thing with a ten foot pole, only hoping and praying that this time it will heal.

At any rate, they were able to use the port for his chemo, another "big gun"--you know it's a nasty drug when it takes 30 minutes to give the drug and four hours on either side for the fluid flush to make sure it doesn't stay in Adam's bladder and cause damage!! During this time Adam ate, played with his brother and sister, visited with friends, ate some more, watched TV, and did some good talking. He was looking brighter than he had in weeks, some small consolation for the morning's scare.

Also during the afternoon came a chat with his doctor and the good news: Adam is now in remission!! The bone marrow sample in the morning showed less than 1% of leukaemia cells in Adam's blood, a very good sign albeit a week late. We were pleased, and glad to hear that the plan at the moment is to carry on with the next two rounds of chemo as planned. He is to have a blood transfusion today to help boost his red blood cell count, but otherwise the rest of the week should be "normal", whatever that means!! It's astonishing how fast a "bad" day can turn "good", and vice versa. Guess I better sit back down before the dizziness hits again.

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....

The Demon Rollercoaster

This is the most recent update from last week that went onto Facebook, for all those who haven't seen it yet. It follows on from the final bone marrow aspiration that Adam had on the 18th and 19th, and the results from that test. Will try to keep posting here so that you don't miss an update if you are looking for one.

Hmm...well. Not exactly sure how to write all this, and definitely not sure that I want to, but here goes.

We saw the consultant today and I'm afraid it wasn't very good news. It seems that her initial assessment that Adam was in remission was not confirmed by the more precise test she did last night. That test is called "immunophenotyping", and it showed that Adam actually has 8-10% of leukaemia cells still in his blood which means he is NOT in remission after all. This is obviously not what we wanted to hear, and not very good news.

However, the next step is still unclear. It really depends on time, how Adam responds to the last few days of the "induction" phase of the protocol, whether he can start on the "consolidation" phase, and if and how fast the remaining cancer cells continue to die off. The doctor wants to carry on as if he were in remission now, to assess his condition over the next week or so, and to begin talking about the next possible step. That step is to consider Adam having a bone marrow transplant, quite honestly the three scary words that have been hiding in the shadows since this whole thing started. The doctor will begin talking to her colleagues in Glasgow soon to discuss the viability of this procedure for Adam, and we will take it a day at a time--not easy to do but it seems this is a waiting game if nothing else. The most critical thing is that Adam will have to be in remission to have a transplant; not only that but he will have to be clinically well too.

Today Adam was lethargic, pale and listless, not like himself at all. It was difficult to hear this news and see him be so still, but this evening he perked up and seemed much better, and once again we feel like anything can happen. My husband's dear uncle and aunt have had to deal with cancer and chemotherapy more than anyone else I know, and she called it the "demon roller coaster". She is right: every minute seems to have lots of ups and downs, and lately every time I make plans another crisis pops up and they fall through. So this evening I decided to "reverse psychology" the whole thing and make plans for the worst, hoping that instead we might have some sanity, peace and most importantly stable home time this weekend. You are welcome to try this at home too! :)

I'll give more updates as I hear them, but if you don't hear anything for a few days we are resting and watching even more Mr Tumble. Thanks again for your support and prayers (and for those who are near, your food too!!) sx

28 days

Tomorrow marks four weeks since Adam's diagnosis of leukaemia, a very long four weeks of our lives. When I say "our", I mean the whole community of friends and family that have cheerfully and readily inserted themselves behind, beside and before us in this journey. We are grateful for you all.

Still, the road is long and it feels like a dark tunnel, especially when tonight, as we have dreaded, Adam has had to go back into hospital for fluids because he is dehydrated. The chemo is beginning to take its toll on his poor little body, leaving him with no energy--the usually mega-energetic boy is not even wanting to walk from his bedroom to the front room, let alone any of his favourite parks or places nearby. He just lays around all day, which, if you know Adam, is a sad thing to behold. The extra drug they added in to his treatment regimen has shredded up his mouth and stomach so he wasn't really eating or drinking the last day or two, thus the waste products have built up in his blood and he needs some IV fluids to set him straight. We had hoped this would be a quick, overnight stay and then back home, but it seems that too is not to be.

The incision where the docs put the port into his chest has started to open up a bit, and while it's not obviously infected it does need to be seen by the surgeons. Finding a surgeon on a Friday night is probably not a quick process, nor is the IV antibiotics that he now needs to make sure an infection does not crop up at the site. So now we're looking at being in hospital at least over the weekend, if not longer. Once again Adam's grandma has been called in to stay with him, and again we are so grateful for her presence and willingness to be there.

I can't get the thought out of my head that our whole family seems to be being torn apart, and my heart aches at how quiet the house is. If I'm really honest, I'm angry at the whole thing, that so much is happening that we can't predict or avoid and the huge, overwhelming amount of effort that goes into dealing with it all. As one mom I spoke to today said--who is herself a model of the seasoned soldier, dealing with this kind of stuff for far longer than I have done--you feel like you just get on top of one thing for another to crop up and need dealing with. It leaves you feeling helpless and hopeless and drained. No matter how much support you have, you still think "how am I going to deal with all this??" And the answer we agreed: You just do.

But I don't want to deal with it!! I just want our normal life back, and yet, as I reminded myself in the quiet tonight, that is not our reality. Our reality is leukaemia now, and all the crap, dreaded or predicted or otherwise that goes along with it. Watching Adam shake and cry and still soldier on himself is little comfort--we must press on for him and for the hope of a leukaemia-free future.

I read Caleb a story tonight from his story Bible, just one I happened to flip to, about the Israelites in the wilderness, crying out for relief from their suffering even though they finally had their freedom. When they were hungry God sent food (and He sent a good friend with food to feed us tonight too)...He took care of them. And yet they cried and protested...hmm, feels a little too familiar to me. The challenge is clear: can I see God protecting and guiding us through this whole ordeal? Because if I can't the obvious alternative is to see nothing in this at all except pain and evil. It is definitely painful and evil, that much is true. And my voice is so weak and my eyes definitely not lifted to the heavens but staring down at my weary feet when I cry out, but if I don't...I guess the answer is that I don't want that alternative. I don't want all this AND emptiness. I will keep lifting up my voice (if not my eyes) to the heavens and praying for strength and faith because I have to. I have to.

And we thank those who pray for us and for Adam, lifting what we can't right now.

One short p.s.: On the bright side, Adam's blood counts are doing good and there is no infection, despite Caleb having a fever all week. The final hurdle remains on Monday--the bone marrow test where they look to see if he's in remission. Will update again then...

The next adventure

Ah, I so hate what I am about to say... Adam is in hospital again, this time for a long time. This time is not a burn, or a heart op, or a bout of pneumonia, all of which he's had in the last 7 years. This time is much worse.

Yesterday Adam was diagnosed with Acute Lymphoblastic Leukaemia. It follows a period of several weeks that he's been having pain in his hips and frequent infections, but it was not what we expected to hear. And yet, we always knew that there was a risk, as up to 10% of children with Down Syndrome also have Leukaemia. The treatment is intense, with the most intensive part lasting the next 6 to 8 months and the total treatment probably the next three years. Yikes. I can't even comprehend the next week, let alone the next three years, let alone isolation, hair loss, sickness, chemotherapy, high risk of serious infection, missing school, etc.

We have had so much support from friends and family already that somehow I know, no matter what, we are blessed and we will come through this. How life will look three years from now I don't know, but that is not what matters. What matters is that today was good, today he laughed with his brother and sister, today he enjoyed watching Mr Tumble on his very own portable DVD player, today he said something unintelligible that had an obvious meaning to him, and it's my deepest desire to find out what it is!

I will keep writing as much as I can about Adam's new journey, and will post pictures where I can along the way. Adam is a star, and I am grateful for his strength and ability to focus on the present and will try to do the same myself.