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.

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.

video