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.

Tuesday, December 27, 2011

Expect the unexpected

I started a post earlier today that I had to pause, and now it seems I have a different one to write anyway.

Adam has had to go into the hospital tonight for what sounds like a chest infection, though we will only know that for sure once the test results come back. In true Adam style he's had a cough for weeks and was probably having fevers all Christmas weekend, but we didn't know it because he wasn't warm and was still acting normal. By normal I mean eating everything in sight, plenty of energy and the cheeky Adam mood to go with it. I only checked his temp tonight just to see what it was, and when it was well over the limit we had to take him in (the limit is 38 and it was 39.4--normal is 37!)

He is wheezing and breathing harder than normal, but otherwise still in good form. When I left Dad was feeding him a second dinner and they were watching Mr Tumble, so by Adam accounts it is the perfect evening! I only hope for their (Dad's!) sake they can sleep some too.

Otherwise we've had a lovely Christmas and enjoyed some quiet time with family and our friend Miss Leah, and also some time with friends. The weather has been great so the kids got to go out and play in the backyard lots too. Adam is meant to start his next block of chemo on Thursday, and that means going in every day for treatments for a week, so the timing of being in is not as bad as it might have been--we have every reason to be grateful and will keep a positive outlook. Thanks, as ever, for your prayers and support...I will be sure to keep you posted.

Monday, December 12, 2011

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!


Sunday, December 4, 2011

The adolescence of chemotherapy

We have now officially entered "Delayed Intensification", the last (hopefully) stage of Adam's intensive treatment before the maintenance phase of the protocol begins, IF all goes well.

This was always heralded as a heavy block, with several "big guns" being used in combination with other chemo drugs, eight different drugs in total over the next 8 weeks. Adam had another lumbar puncture on Thursday, and the initial results from that were good: no Leukaemia cells in his spinal fluid, no cells apparent in his bone marrow. We are still waiting for the results from the MRD test that they send to Glasgow, they should be back next week. Those will reveal a little bit about the progress that Adam has been making, but they are not "decision material"--the biggest decisions will come at the end of this block of chemo (end of Jan).

On Friday I took all three kids up to the hospital for Adam's infusions. The whole process lasted more than three hours--which you would think with three kids in the same small room would be a nightmare. It wasn't--it was actually sweet time together: Agnes crawling around playing with various toys and using the bed rails to pull up to stand, Caleb and Adam watching TV and tucking in to corned beef hash provided by the hospital tea trolley. Caleb played hide and seek with Adam's consultant, another doctor held Agnes while I helped Adam's nurse get the infusion started. We ate, played, sang, talked and, hopefully, remembered this time. The memories of this time is the one thing that I don't want to lose--come what may this is our life right now and I want to embrace it fully.

Three hours and ten minutes later we had embraced it and were ready for BED! :)

Adam has also restarted his Dexamethasone, a high-powered steroid and building block of the chemo protocol, at nearly double the dose of before. So far, and this is still very early days, it has made him like the stereotypical teenager: moody, emotional, hungry and sleepy! Bless his heart, he is 8 going on 15 right now, but we are hopeful to make it through the week as smoothly as possible. It won't be too hard if he continues to sleep 12 hours a night!

We are well, for now. Thank you all for your support and prayers--I will update again as soon as I have anything useful to say.

Friday, November 25, 2011

Thanksgiving retrospect

I fully intended to do a post last night but got waylaid. I thought that maybe the moment had gone, but did not want to be ungrateful, or for anyone to think that I've lived in Britain long enough to not care about turkeys and such anymore. Actually, to be honest, the latter might just be true...our "Thanksgiving Dinner" consisted of leftover roasted vegetable enchiladas from Agnes' baptism lunch, a creamy Brussels sprout and Romanesco dish and peas. I did make a pumpkin pie for dessert, but I made it out of sweet potatoes--my favourite fake of all time! :) I was actually quite pleased with myself that no animal had to die for my family last night. Call me sentimental, but I guess I don't always see the point, especially when roasted carrots taste so yummy. That, and my oven is too small to host a turkey!

So, I spent the day in what I consider a very appropriate manner for the occasion: I went to be pampered at a spa day for mothers whose children have been recently diagnosed with cancer, paid for by some businessmen of Aberdeen who donated money to Clic Sergeant (a children's cancer charity who also pay for the nurses who keep an eye on Adam at home).

The pampering, I was very thankful for that! The rich businessmen, very thankful for their generosity. And the other mothers: very thankful for their stories that helped put ours into perspective. Adam is doing really well when I place his journey next to some of the other kids' journeys. Many have spent months, yes months, in isolation. Many have been extremely sick during chemotherapy. Many have not been able to go to school. Many mothers are still struggling with the diagnosis a year on and worry every day about relapse. Many are also finished and we still have a long, long way to go.

I'm not saying I don't struggle, or worry though. Last night the reason I didn't post is because Adam spiked a temperature and I found myself too distracted to concentrate. Would we have to take him in? Should we go now, at 8pm, or wait for 2am when he spiked again? Does it count that they told us to call when it reached 38.5 and it was 38.4? In the end we put him to bed and his fever broke and he was fine all night, but I don't know if I'll ever get used to the feeling of impending doom all the time. I was also thankful, meeting the other mums, to see that I'm not the only one, and also to see that life goes on and it is still possible to have a nice lunch and massage and "forget" for a while.

But let me not forget to say Happy Thanksgiving all. Enjoy the blessings of whatever you have--health, wealth, physical strength to help others, the chance to listen to or comfort someone, children, a soft pillow, laughter, tears...it's all part of the journey.

Thursday, November 17, 2011

Adam on wheels

I could not let one more minute go by without sharing the good news: Adam now has a bike!!

The charity Cyclists Fighting Cancer have graciously given Adam a specialised trailer bike, complete with harness so that he doesn't run away (or fall out when Mom accidentally hits a dip and spills him over! More on that later--he was ok, by the way!)

It's amazing, and yet another part of the silver lining around the clouds that have hovered the last few months. Adam was thrilled, clapping all the way home as cars dashed around us and mom rode slowly along, terrified! I can't believe we can all actually ride together now--will take a bit more work before this learner is used to the weight distribution of the trailer, but the look on Adam's face last night was and will be worth it all.

Pics to come when we ride again--in daylight this time!!

p.s. For those of you who have asked what you can do to help and are still hoping for a chance, here is one option: you can always donate to those charities that have helped us, and CFC is one of them. The bike they donated is easily worth £500. AND you can also keep kicking my butt to fundraise for them one day, when time and energy and treatment regimes permit. You choose :)

Monday, November 14, 2011

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.

Thursday, November 10, 2011

Safety net

I have a lot to do: this is a fact of my every waking moment (and my sleeping ones too, though I'm less aware of it then). However, there are some things that deserve a rant no matter how busy one is, and this is one of them. Stop reading now if you don't want to "get involved."

As a parent--as a mother--of a child with Down Syndrome, it behooves me to point out that a new prenatal test is being released soon that will make testing an unborn child for Trisomy 21 safer, more reliable and available earlier. This is not good news, obviously, especially for those of us who love one of "these children" and all those who might have had the chance to discover the adventure for themselves.

I'm not going to point fingers at anyone who gets prenatal testing, that's not my intention. It just grieves me that it's so commonplace now that we have become immune to what it is we are doing when we let a doctor take a sample of blood and look for "abnormalities." I do, however, want to point out one very obvious fact that I think gets left out of most discussions, at least among plebes like me, and that is the issue of who profits from the test.

When a mother gets this "MaterniT21" test, as it's being called (for one full article on the subject read here), no matter what the diagnosis is, who profits? Full marks if you said the company that produced the test, i.e. Sequenom.

We may think that it's the woman, or the couple, or their family who "profit", but the fact is that Sequenom want you to take their test, they want your money and they don't give a damn what the result is for you. This is evidenced by the fact that they don't put one red cent into developing education or training materials for those who perform or take this test. There is no moral dilemma for them, this is not a child's life in limbo, or a family's journey, it is simply a few billion dollars they stand to make if people buy the jargon of "safety" and get the test.

Here is another fact, just as unappealing to many people: there is no such thing as safety. You can have all the tests in the world and your child is still unknown until he or she is born. There is no test to see what their grades will be, if they will be predisposed to stealing (or worse). If they will have friends or finish school or end up on the streets. You can never know, you just have to live with and love the people you've been given, and you get to find out along the way how blessed you have been.

Sorry for the rant, but I have to speak out. If not for myself, then for one of "those children"-- and two others who learn, in part by my example, what it means to walk beside him every day. I know Adam, and all my children, not from tests but by asking the one who made them to help me know them.

It is not easy, but it is surprisingly very safe.

Wednesday, November 9, 2011

Ground Zero

Well, we are officially on our own again: California Oma left this morning to return to her home, and I drove home slowly with what I'm sure were glazed, panic-stricken eyes!

It's not so bad, and while we are TOTALLY grateful for the help she gave us for THREE months, I always knew I would need to pull up my bootstraps and get back to flying solo. I kind of hoped that time would go a little slower, but on the bright side three months of Adam's treatment have whizzed by, and we only have just under three months left before the maintenance phase.

I was actually quite proud of myself at dinner, and commented to Brian that we had "made it" fine. He reminded me that we haven't actually done a whole day yet. Always the realist, that boy!

Here's to the baby remembering what sleeping at night is, to Adam's mouth being zero tomorrow (on the scale of mouth damage, 0 being none and 4 being where we don't want to go), and Caleb keeping to the "not before seven dot dot oh oh" rule. Peace, love, mercies small and large and enough caffeine to keep the ship sailing.

Tuesday, November 8, 2011

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.


Thursday, November 3, 2011

Mr Tumble made my day!

Thanks Mr Tumble (Justin) for bringing some light to a hard week!

Sunday, October 30, 2011

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!




Thursday, October 27, 2011

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!!! :)

Monday, October 17, 2011

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.


Friday, October 14, 2011

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! :)

Sunday, October 9, 2011

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? :)


Tuesday, October 4, 2011

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.

Saturday, September 24, 2011

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.

Friday, September 23, 2011

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. :)

Wednesday, September 21, 2011

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!!

Tuesday, September 13, 2011

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!

Monday, August 29, 2011

And in the meantime...


Caleb had his first day 9-3 at primary one today, so he is truly a "Big Boy" now. He loved it, got a sticker for being quiet (!) and one for being a good boy. He sang me his "Annie the apple" song tonight, obviously the first step to learning his phonics. He ate lunch with Andrew (his school buddy) and Alexander. He saved his granola bar for his afternoon snack. I am so proud of him.

Adam had a special day today too--his 8th birthday!! They had a party for him at school, they sang to him on the bus, and we celebrated tonight with cake and a massive, musical extravaganza of the Happy Birthday chorus complete with all the instruments we could find around the house. He loved it.
Here he is in his cool duds, while my friend Cammy Moore took photos for us over the weekend. She's seriously good, I can hook you up if you want to see for yourself!! The top pic is one from her too.

Agnes worked on her sitting up, her eating, her next two teeth, her nap, and was a beauty to behold all day. As you can see in this photo, also by Cammy.

And since all good things must come to an end, I'm off to bed. Hope I left you with a smile! :)

Thursday, August 18, 2011

First day of school

For those who have been following the blog, a little bit of sunshine for once!

Yesterday was Caleb's first day of school, and he looked so handsome in his uniform! Adam too had a joyous return to school this week, another handsome uniform and some beaming smiles to go with it! No matter what happens, it was worth it to see his face when I did the "school" sign.

He is doing really well, and today went to school after his lumbar puncture this morning. Another sign our life has changed: becoming blase about general anaesthesia ("it's only a lumbar puncture today")! The port they put in last week is working beautifully, and healing well. The doctor even said that he can go swimming after the needle comes out! Tomorrow is two doses of chemo after school then a week off. We are so grateful for some normal in our lives, almost don't know what to do with it!!

Agnes is settling in too, learning to sleep better and definitely keen on the whole eating thing!

Here is a pic of the boys, one blond and one fuzzy, both blinded by a sudden patch of light:

Thursday, August 11, 2011

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.

Monday, August 8, 2011

Monday morning

I've been reading a book called The Winter of our Disconnect by Susan Maushart, a journalist living in Australia who tried an "Experiment" with her three teenage children--giving up all media for six months (and all electricity for two weeks at the start as "boot camp"!) It's a great, very enjoyable read and an illuminating look at how dependent our culture has become on our iThings to live our iLives. I totally get that.

Then over the weekend I went and bought a Netbook and printer. And yesterday I sent off my HTC smartphone to be fixed and promptly felt the sting of being disconnected. What an irony!

However, being consigned to the hospital for hours and days on end has a funny effect on one's productivity and social input. I'm more fond of BBC news than I thought, more chatty with the nurses than I was before, and convinced that I will "get stuff done" with a computer in the room. Really, I'm just lonely and being stuck with my own thoughts and worries for too long is not healthy. I'll admit it makes me feel better to have "access", and I've told myself that I can do more blog updates while I'm stuck there (oh, yeah, and some work too!)...you know, Adam as my muse and all that.

As of Sunday at 5pm he was looking better--still had a fever but it did not go as high, and his neutrophils have climbed to the dizzying heights of 0.3!! Keep in mind, this IS an improvement! He seemed in better spirits, wanted to sit and watch the lifts (elevators), walked with sister and I to the play area, asked for Mr Tumble...in general he seemed as close to how he was at the beginning of any time in the last 4 weeks. What joy!!

Having said that, when I gave him a bath I saw all of his war-wounds: the port site, still the subject of much discussion and speculation, the red lumps where he's getting his heparin injections, the many track marks of blood-letting, the bruises, the tiny, skinny legs and arms and bloated belly, and of course--and most distressingly--the hair coming out in fistfulls. You can now see more scalp than hair--but it's a cute scalp for sure!

All this is par for the course, and again we press on. I am ever hopeful that the docs might let him home for a couple of days soon. A lot will depend on how things go with the port this week, and of course I'll keep you posted. AS it happens :)

Thursday, August 4, 2011

No news = impatient!

I had thought I would wait to blog this week so that I had more to say. Turns out there isn't much more to say!

Adam was readmitted to hospital on Monday for a fever, started that evening on IV antibiotics and some fluids. Turns out they can't find the cause of the infection as blood cultures are still negative, but they are covering him with both antibiotics and antiviral medications. His port site looks good, but the doctors still can't get it to work, i.e. to give blood back. Fluid goes into the port, but one of the main reasons they put something like that into a patient like Adam is so they don't have to continually stick him with needles. That really is our proverbial thorn just now, as poor Adam has been stuck so many times he looks like a bruised pin cushion! They have put some "clot buster" stuff into it and tried it again today with no luck. The next step is to have the surgeon look at it, and we have to decide whether to have them try to fix it, take it out and put in another one, or take it out and put something else in instead. As you can tell, any of those options involves Adam going to surgery again, which he can't do in his current state of infection and very low blood counts. So we are again waiting for his body to pick up before we move on to the next step.

His tummy seems to be bothering him, and we don't know if this is a side-effect of the chemo or a possible bug. Again, time and the sample taken today will tell. I did feel both sorry and proud of the young doctor who took it...sorry because it was some stinky poo to scrape up and put in a bottle, and proud for the same reason! They really are a nice lot in this hospital, and even when the lines of communication are a bit muddled, they still like Adam and try their best. You can't ask for much more (though we often do!!)

Tuesday evening was our anniversary, and we celebrated it with take-out Chinese food in picnic fashion around Adam's bed. While it was a bit rushed and punctuated with drugs being given and nappies changed, it still seemed fitting: what better way to celebrate 14 years of marriage than by caring for our son who looks like a little old man along the way? I am grateful that we have the chance to be with him and care for him in our own ways...Brian is doing the nights, and I (and Agnes and Caleb) the days. It is a long old life, and I look forward to having Adam home again, though with the speed that we're getting to the bottom of all this, it may not be soon.

Monday, August 1, 2011

Hospital again

Adam is back in hospital tonight for a suspected infection. I noticed he felt warm this afternoon, and when I checked it his temperature was high enough to have to call the medical ward. They asked for him to come in for blood cultures, so I packed a bag for he and Daddy and off they went. It was a shame since we had just come home from the hospital to have Adam's blood drawn ahead of tomorrow's lumbar puncture. I suspect now that the LP won't be done until they know what is going on.

I still haven't heard from them, which means I don't have any update. I suspect they are having as good a sleep as possible in the hospital, with Adam hooked up to fluids again after a dose of IV antibiotics. I'll keep posting news here as I have it...for now we rest and wait.

My prayer tonight is for a sense of calm and peace, for rest for Adam and Brian, for clear results from the blood cultures so that the docs can treat Adam quickly and effectively, and for strength for Adam's little body, already going through so much.

It may well be a full week, but I'll try to update again soon.

Wednesday, July 27, 2011

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.

Monday, July 25, 2011

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....

Saturday, July 23, 2011

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


Monday, July 18, 2011

the Tree of Life

Brian and I went and saw "Tree of Life" today...it was absolutely the most perfect and most awful movie ever to watch if your child is in the hospital on chemotherapy, and you are waiting to hear if they are in remission or not. We needed to escape while we waited, though had I known what the movie was about I might never have left the hospital at all! I don't have the energy to summarise here, but you can look it up yourself, or better yet, go see it and see what you think.

As it turns out, the doctor called halfway through and said the test had been inconclusive and they need to repeat it tomorrow morning. But having grappled with the whole of the last month--the last eight years, really--during the two and a half hours of Mallick's vision, somehow I feel more peaceful to wait. One of the quotes I liked best from the movie is this:

"The nuns taught us there were two ways through life - the way of nature and the way of grace. You have to choose which one you'll follow."

This from a mother who loses her son in the movie (I know, I said it was awful!!) Can I wait in grace? Can I love in grace? Can I care for a sick and disabled son in grace? Can I love two other children in the midst of sadness in grace? Can I take it all--the good and the awful--and be grateful, be humble in the face of the Creator who made the world and loves me? I think most days I am still trying to choose which way to follow, but this was a beautiful and stunning encouragement to choose the way of Grace, from Hollywood no less. Thank you Terence Mallick.

Friday, July 15, 2011

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...

Tuesday, July 12, 2011

Peering over the edge

Has it really only been 3 1/2 weeks since the diagnosis that turned our world upside down?

Yes.

We are nearing the dreaded four week mark, at which point Adam's "numbers" (the percentage of his blood cells that are leukaemic and therefore indicate how well he has responded to treatment in this first phase of chemo) are supposed to be zero. The whole point of the first four weeks is to zap his body with enough toxic chemicals that all the bad cells die, a point called remission. The only problem with that is that his good cells will also be killed off during this phase, leaving him very vulnerable to infection. The point where Adam does not have enough white blood cells to fight infection is called "neutropenia", and when he reaches this point he will be "neutropenic."

We are there today. And tonight Caleb had a fever. Oh Dear.

We are trying to convince ourselves that Caleb might just be tired from two days of football camp, where I know he has been exerting himself all day in the fresh air. It might just be that his body is tired and a good night's sleep will restore his equilibrium. Of course, it might also not be that, and it's the feeling of not knowing what is in store that makes me think of walking along a cliff, teetering on the edge and looking down over into the abyss.

I wish we had parachutes, or a magic carpet, or something. Instead we have Nurofen and our prayers, which tonight are for rest, healing and faith to keep walking and not be afraid.

Sunday, July 3, 2011

Lazy summer Sunday




This morning we had the occasion to go see thousands of women in Aberdeen running the Race for Life in honour of Breast Cancer and Cancer Research UK. I have run that race before but this year we were there to watch for our friend Chioma who was running for Adam. Yes, we've joined that race now, and Adam, whether we like it or not, is a cancer patient. One of the medicines he is on makes him sensitive to sunlight, so we wrapped him up in a blanket and cap and sunglasses and noted sadly how much like a cancer patient he looked in that getup. However, true to Adam's stubborn Brock nature he got up several times to trot away down the beach, a sight that brought smiles to many faces--ours most of all.

Since today is Sunday, and since we can't go to church, or at least Adam can't risk the infection that so often accompanies a church service, we decided to have communion after the race with the birds and bees in our sunny back garden. We put out a table, covered it in food, goosed up the grill and had ourselves a proper feast! Adam spent time in the paddling pool, Daddy and Caleb had jumping contests on the trampoline, and baby Agnes practiced her new-found squealing voice in her buggy. Mom soaked up a little too much sun (who says you don't need suncream in Aberdeen?!) and Oma alternately held, fed and read to children.

In short, it was perfect.

We still laugh at how much our steroid-pumped Adam can eat just now, at the faces he was pulling for the camera, at Agnes' love for her hands and squeal, at Caleb's energy and antics on the trampoline...we are grateful for a lazy summer Sunday and communion with the sunny face of Aberdeen.



Friday, July 1, 2011

Goodbye to nursery...


Amidst all the stress, worry and sleeplessness of the last two weeks we've also had a major milestone: Caleb has now officially finished nursery!

I attended his leaving tea party on Thursday morning and was so proud to see Caleb singing the "Goodbye to nursery" song with the other kids. I was also amazed (and a little bit proud!) to see him towering over the others--that boy is tall!

It's been a good five years and I've enjoyed seeing Caleb mature into a child who is keen to ask lots of questions, ready to learn and able to absorb lots of information and new experiences. We went today to visit his new school, St Peter's Catholic School, and meet his teachers, and he was very excited to see it and begin to get to know the place where he'll spend the next seven years of his life. We are pleased with the school and staff and anticipate lots of happy memories will be created during his time there.

Here is a video of Caleb and his friends singing their song, and above is a picture of him holding his sister. He is a sweet boy, and I look forward to seeing who he will become in this next stage of his life.

Monday, June 27, 2011

Bright spots



Adam got out for a break from the yesterday, so we all went home for some lunch (his second lunch, gotta love those steroids!!) and then went down to the beach for an ice cream and a short play on the swings. It was so mild, and so much fun...

So NOT what I thought this whole thing was going to be. I realise we're only one week in and things will get much tougher yet, but it's good to know--and good to share--that there are still moments to enjoy and laugh despite the enormity of the situation. Adam is still Adam, and the nurses are learning to keep their scissors out of reach or he'll grab them and throw them across the room faster than you can say "health and safety"! And at least one nurse has been on the receiving end of a friendly slap on the backside as he walked past--no matter how bad he might feel, there is evidently no reason to miss out on a butt-slap in Adam's opinion! :)

Here is a picture of Adam on his favourite swings, and the top one is him having a visit from some friends from his school. You can see his smile hasn't changed at all either!
Famous wings!

Sunday, June 19, 2011

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.

Thursday, June 2, 2011

One of those days...

As my husband would say, I frequently have "one of those days". Today, however, was one of those days--the kind I'm not too familiar with, the kind I am learning to be really grateful for when they happen and not worry about when they don't...the good kind!

I don't mean to say my life is bad, not at all. It's just that normally life is not quite so peaceful all day, normally the baby doesn't sleep when she should and go to bed without much fuss, and normally the sun doesn't shine in Aberdeen and blast out 75 degree heat! But today it all happened, and this is how it looked:

Tractor play, paddling pool, gardening (what I was doing before I took the photo) and enjoying the lovely flowers...all ingredients for a fabulous afternoon with the kids. As you can see, the garden is a very conducive place for relaxing and creative engagement, good for the kids, good for me.

I realise I haven't even written about the move or the new house yet, but anyone who has moved knows how snowed under you get by details and the sheer weight of boxes and stuff to sort out. I'm nearly there though, enough to drop it all and go outside on the warmest day of the year so far. It's really a wonderful place for us, as this picture can testify.

The bathtub is another great plus, but I won't be posting any pictures of us in there! (though we all have gotten in together a few times so far it has to be said!)

More pics and details soon...maybe when the rain returns!

Thursday, April 28, 2011

Why Can't I Learn?

Today I had some friends over for dinner, to keep me and the kids company since Brian is away (just for the day). It was a great idea, and I really love the ideas of hospitality and community in general, but inevitably somewhere along the way I begin to regret the decision as Adam begins to express his Adam-ness in the midst of the chaos.

Why is it that I never learn my lesson? When I change the routine at all, let alone bring new people into that changed routine, Adam is going to go wild. He will throw things, push children, spill drinks, lash out, cry when disciplined and in general occupy all of my time and brain space. I know this will happen, and I still do it.
I go through the same stages of grief every time--anger and disappointment that Adam acts the way he does, guilt for being angry with him, back to anger that he never learns no matter how "well" I try to teach him, back to guilt that I never try hard enough to teach him well...now that I think about it, there are really ever only two stages of grief in my experience with Adam!

In part it's for my own sanity, to have other adults around to talk to. I also want Adam to learn to be with other people well, and there is only one way to do that. I know that Caleb and Agnes and I need a life and need to be with other people, and so does Adam. In theory it will help me through a difficult night, though in practice the night becomes more difficult at the same time. I feel isolated enough in my life with Adam that sometimes it's my breath of air to break out of the mold...but it's not really relaxing that I have to gulp that air quickly while chasing Adam around and shouting at him is it?

I guess if I could learn anything it would be how to react better, how to help Adam along and not sweat the inconvenient cups of apple juice on the floor or friend's child crying in the corner, rubbing his head where the toy car just bounced off of it. Tonight I at least learned that strapping him into his chair for dinner a few minutes early saved me a few minutes of stress. I learned that I still at some levels don't know Adam at all, and that bothers me enough to keep trying, even if it means engaging in nights like tonight to see where we are at.

Though it will be a few months until the next one, I assure you.

Sunday, April 24, 2011

Resurrection

I've always tried to observe Lent, by taking something on or giving something up. It's a practice I've kept since college days, learned from the church I went to which at that time was called Disciples' Church. Some years were "better" than others, if you can describe it that way. This year was a new experience entirely, one which I am so grateful for and the timing of which can only be considered a gift from God.

Three days before Lent started Agnes Sophia Rose joined our family. That means that by Ash Wednesday we were all properly exhausted and the normal family routine was in tatters. I had thought that this year I would give Lent a miss, mostly because I had had so little time and energy to think about it properly. However, it slowly dawned on me that the reality of our new life, my tiredness and grumpiness and feeling completely out of control in every way--physically, emotionally, mentally--without any reserves at all, this was exactly the meaning of Lent.

If we are to identify with the suffering and sacrifice of Christ, then what better way than to take on the fullness of caring for and giving to a new person? All that Agnes requires, as well as the two other children I've been blessed to have, is the life, love and sustenance that Jesus died to give to us. Every last minute of sleep I've lost and pined for is the sleep He forsook in the garden while He prayed. Every cry I've soothed and not known how to soothe is the cries to Him of us in our sin. Anything I've ever given up is nothing compared to giving your whole life up to such a blessed and yet wholly demanding calling like a new child. And nothing at all compared to giving yourself up for humanity like Jesus.

I have had rare moments to myself, very few showers, only a handful of meals where I wasn't holding a baby or helping a child to eat, scant bursts of anything resembling exercise, late and interrupted nights and countless sentences left unfinished in the last seven weeks. But now as Agnes is growing, settling into a routine and becoming a person before my very eyes, I am so grateful for these weeks of learning to love her and to love giving to her in a way I didn't know before.

Today was a celebration for me of being resurrected from the darkest, loneliest and emptiest places of life. I've been there before--Adam had his heart operation just before Easter seven years ago, and it was on Good Friday that he was at his lowest place and we wondered if he would live at all. It was also that day that we found out he had Down Syndrome, which was placed in perspective alongside the prospect that our beloved son might not live. I know in my head that light comes out of the darkness, that Christ meets us where we are completely bottomed out. But this year was a chance for my heart and soul to learn the same and to see those early weeks of having a new baby not as torture but as the gift they are waiting to become.

Happy Easter.

Sunday, April 17, 2011

Flower girl


Couldn't resist--thanks to Beth Levan Lyle for the flower and Jesus for making such a beautiful baby girl to wear it!!


The Holiday Report

They say timing is everything, and that is certainly the case with the last two weeks of our lives, also known as spring break.

When Caleb got up on the Wednesday morning before school got out covered in spots, I knew that we had finally come face to face with the dreaded Chicken Pox. It wasn't as bad as I had expected, but still knocked him down a bit. However, he was well enough by the weekend when Opa joined the party, and our happy seven-some got to spend a few warm days out and about in Aberdeenshire at various parks and cafes. We had a great week, and sadly bade goodbye to Oma and Opa on Saturday at lunchtime, ready to embark on life as a new family of five. We headed first to the park, and then came home for dinner.

At bath time we saw Adam's first spots. It seemed pretty mild, so much so that we all went to church on Sunday morning like usual. By evening, though, his fever had come on and we spent the next two days with the works, watching spots come out like fireflies (see below)

Whew, that was bad. But despite the redness of some of the spots it's been a pretty classic case too, and a trip to the doctor on Thursday morning relieved my worries about infection. He gave us some antiseptic lotion to use and Adam is pretty much over it now. Though midway through a trip to the country with our friends I saw a spot on Agnes, so the poor soul has had to go through the whole thing too! Her case was so mild I wouldn't have known she had it but for the few spots, and she is also over it too. I can't say how grateful I am for the timing of all three kids having the pox over the holidays--I really feel now like we are starting fresh, ready for school tomorrow and bursting with (some!) renewed energy.

We also enjoyed a visit from our lovely friend Andrew Cameron and his son Thomas last week. They were good enough to tolerate our spots, sniffles and general grumpiness, and we all enjoyed some nice outings and good food together. Thomas and Caleb had grand fun playing, and the boys (minus Adam) got to see Urqhuart Castle and Loch Ness on Tuesday. Caleb loved the fact that he stayed up till 10pm, and I loved the walk through the Botanical gardens that Adam and Agnes and I did in the sun and the quiet evening we had together instead.

And now I will head to bed and await my little lamb waking...I tried my first night of sleep training and failed miserably, but it's still early days. Gina Ford, here I come (again)!