Lent 2012

Today is Ash Wednesday, the beginning of Lent. Today is also the day before we head back to the hospital for Adam to have his new port put in.

It has been a very nice, relaxing two weeks since we were last in the hospital as patients. Though this will hopefully only be a day trip (Adam is on the afternoon list, so depending on the time he goes in and the time he is ready to go home we may have to spend the night, but we are hoping to avoid that) it has been such a complete break from all things medical that I find it a shock to be packing the bag again, to be making contingency plans again, to be preparing for surgery again.

The irony is not lost on me that the Lenten time is a period of penitence, of remembering our Lord's suffering and of being mindful of that which takes hold of our hearts on earth. I began the usual process of thinking about what to give up, and then realised that just the act of getting in the car tomorrow at 10:45am will be my Lenten observation. I don't want to go back, I don't want to send Adam back into theatre, I don't want to give up another whole day of my life. MY life. I like things the way they are, I like normal and I like boring.

One of the most common phrases we will hear over the next six weeks has to do with denying yourself and taking up your cross to follow God. Last year Lent began with Agnes' arrival, and the denial of self--and particularly sleep!--that accompanies the first six weeks of a new baby's life brought the meaning of Lent to my heart in a deeper way. Now this year Lent is beginning with another, different celebration of life: joy that Adam has finished the first part of his treatment, gratefulness that he has done so well so far, and steadfast, resolute and dogged willpower to begin the next two years of our life's journey.

I am no saint--I really want to be done with all of this!! But I am humbled and blessed to walk alongside Adam who perseveres without complaint, and the doctors who continue to support and treat my son, and our many friends who carry on with us gladly.

Happy Lent, if that's not too paradoxical a thing to say.

Decision made!

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

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

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

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

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

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

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

Decisions, decisions

So...seems I need to stop making predictions about things because I haven't been right about anything yet this week!

It's not a tummy bug, and Adam is not going home any time soon. In the complete sense of being discharged that is; the current plan is that he goes in for the night so that he can have antibiotics via his IV line at 8pm, 2am and 8am, and then comes back in during the day for another dose at 2pm. In between he can go to school, and we can go about our afternoon as normal. Except for the new threat hanging over us which is that this bug may not clear out with only one week of antibiotics.

The doctors are now concerned that the bug is still growing, despite more than 4 days of IV antibiotics, and we might need to switch to a different one for a further week. This same antibiotic can also be given orally, but it's efficacy against an infection in the blood, and more specifically in Adam's port, might not be the same as giving it directly into the blood.

Our doctor has left the decision to us: Seven further nights in hospital and seven further days of IV antibiotics in the hopes of completely eradicating this bug--which may or may not happen no matter what, in which case the port comes out and another has to be put in, OR we switch to oral antibiotics this Friday, go home, and hope for the best. If the bug comes back we still have to change the port, and then we will wonder if we made the right or wrong decision. AND, if the bug comes back after that much antibiotics, will it then be resistant, in which case I don't know what they are going to be able to do??!

So we have decided to see what the blood cultures are on Friday and go from there...if negative, i.e. the bug is gone, we will opt to take him home and go the oral route, ensuring that he is able to sleep well at nights (something he and we can't do at the hospital) and hope for the best. If it is not gone, we will stay the extra week and keep praying that this next one will do the trick. This is a notoriously "sticky" bug and Adam is now properly neutropenic so every move counts.

Will keep you all updated on his progress and our decisions.

On a lighter note, last night a friend of ours was across the way at the hospital which made for a pleasant evening of chatting. During our chat, Adam left his Tumble, came into her room and started opening her drawers--he took out her bra and tried it on, then put on her Ugg boots and headed down to the lift in them, slapping along the corridor in his too-short pajama bottoms and too-big boots, hilarious!! The boy really does know how to make us smile!

Best laid plans...

Today has been another example of what I affectionately refer to as "The Brock Circus", otherwise known as our life.

Today we combined all of the following in a 12 hour period: a funeral, chemotherapy, school, a hospital stay, a birthday party and two trips to Sainsburys. As you do.

This morning I went to the funeral of a friend and our former neighbour Geoff Banks, who passed away last month from cancer. I really wanted to go even though I knew it would be hard, but I wasn't prepared for how emotional I became. I started crying when I walked in the door and saw his picture and his children greeting the attendees. I started sobbing (the embarrassing kind with snotty sniffs and all) when his sons went forward to carry the casket. I miss Geoff, and am saddened at his life shortened...but I am also all too aware that it was shortened by the same disease that we are currently fighting in Adam. It was a beautiful service and his family held up well--all the same the experience left me drained as I confronted for 45 minutes all that I don't want to think about and hope and pray I never have to.

Next stop, Adam's school to collect him and head to the hospital for his chemo appointment. It was all going swimmingly and on time too--we were on target to get to his brother's birthday party that started at 4pm, because by the way it was Caleb's birthday today! (I will post pics in another post soon) I wanted Adam's chemo done early so that he could play with Caleb and the others at the party. One of the medicines he was due today requires an hour afterward to make sure he doesn't react, and I had allowed extra time for that. So far so good.

Then I noticed that he felt warm, and saw some little red dots appearing over his stomach and back. I asked the nurse to check his temp and it was well above normal, 39.2. Going to the party now? Fail. The nurse suggested we go to his room to rest a bit and see how he got on...well, within 10 minutes he was vomiting repeatedly and his fever had gone up to 39.7. I'm not even going to try at this time of night to do the calculations...needless to say it was much too high to even think about going home. Blood cultures, check. Full blood count, check. Vomiting bowl, check. Waiting, check. Change my clothes as soon as possible? Check!!

Brian walked up after depositing Caleb and Agnes at the party and designating someone to watch them...luckily I had booked an indoor play place at the last minute, having changed my mind about doing it myself at home. Phew! So he walked in and I handed him a stinky, sleepy and retching Adam and headed to the car--I had the cake in the car so had to get it to the party at some point! The kids were having a great time and everything went smoothly from there. I have great friends--did I say that clearly enough? GREAT friends, who drop everything and put my children to bed so that I can go to the store and back up to the hospital with Brian's stuff.

At this point we have no results from the tests so are assuming it's a vomiting bug that will run it's course, sooner rather than later we hope. The IV fluids are up, he has been sleeping since 5pm, IV antibiotics just to be safe and still waiting to see how he is tomorrow. Our great friends are also going to watch the kids so we can still try to get to this concert we have booked and have been looking forward to for months. Under normal circumstances I would never leave Adam in this state, nor would I ask anyone else to look after him. BUT, nothing is normal anymore and I know we have to try and trust. Our friends will take good care of him, and this is nothing that won't correct itself in a few days at most.

I will post more, including pics, when I get the next chance. It's bath and bed for this tired mum now.

What you don't see, revisited

Well, that's Adam back on track with his chemo protocol, after his month long RSV-induced break. He's been on great form, looks good and other than a bit of morning nausea/vomiting has been doing great.

It was a crazy last few days though, starting with all day at the hospital last Friday with both Adam and Agnes. Try to imagine the difficulty of sitting in the room with Adam, stuck to his bed for five hours straight, and at the same time walking up and down the halls with little girl who just wants to practice moving. For five hours straight, did I say that? Well, it was tough but they were both very good and the play staff helped out a lot. Adam, for all that he's had trouble in the past with being able to sit in one place for any length of time, did not even attempt to leave his bed while he was hooked up to the drip. For five hours. I was amazed and grateful. It did take nearly 320 minutes of Mr Tumble to help him with this accomplishment. How long is 320 minutes Brian asked when we got home? More than five hours I said!

So, that was his long infusion of Cyclosphosphamide, the last one, and the last four days were his short Cytarabine infusions, each taking only five minutes. We even made it from school to hospital, back home to drop off the car and walked Caleb to his swimming lesson by 4:30pm on Monday, to his great delight! He is really enjoying the pool (though it could be warmer!) and I wanted him to have something for himself this term, no matter how difficult the logistics would be. It looks like only this Monday and next that we have to rush a bit, otherwise after his next lumbar puncture on Friday, his next set of four cytarabines, and two other Friday infusions Adam will be done with the intensive bit of his protocol!! That's 10 February if you want to mark your calendars--as long as we don't have any other setbacks. From there it's maintenance for 18 months. No need to mark calendars for that yet!

The question that has been on our minds lately is why is Adam doing so well on chemo, better than most other children we've heard about or met? Meaning, how come he has had less side effects, less debilitating sickness and joint pain, and missed hardly any school? The RSV event was pretty much par for the course, just very inconveniently timed and lengthy. I guess the only answer is that we don't know, but we are grateful. It could be his makeup, something to do with his Down Syndrome, we don't know. Lots of things--drugs, viruses, immunisations--have never affected Adam in "normal" ways, and that has been both good and bad for him. So it stands to reason that Adam would not react in textbook manner to chemo, but I find it hard to believe that it would be this good overall.

Having said that, the month that he was off chemo we had the chance to see "pure" Adam again, albeit partially hidden behind an oxygen tube. He was sweet, talkative, helpful and cooperative. And over the weekend as the chemo kicked in he was a little more aggressive and tearful at times. So it obviously has an effect--maybe the question is better put, how do I tell how much Adam is changed by chemo? I was glad for the reminder that though subtle, Adam is anything but normal just now, even on his best days. But that month long break made me SO look forward to having his sweet normal self back in due time--cancer free, of course!!

Good news finally!

Well, after 17 long days we have finally taken Adam home for what we hope will be the last time in this most recent round of hospitalisations. He is over his infection, done with wheezing and nebulisers, has been to school two days in a row now, and is to all outward appearances our happy, healthy little Adam again.

The reason I hope this will be the last time is that I jumped the gun a little bit and took Adam home before the doctors were fully convinced that he's medically safe, before they were quite ready to send him home. That is because Adam has still been requiring oxygen at nights to keep his oxygen saturations in the blood up to a normal level. It's been like this for a week now, with him well during the day and still needing a trickle of oxygen at night. But last night the trend was clearly up--by morning, when he was still deeply asleep, his numbers were at 88% instead of 80%. That, my friends, is good enough for us.

We don't make these decisions lightly, but we have had to make them many times in Adam's short life. Always it's a mixture of trend, how Adam is in himself, where we are physically and mentally and what the family needs. While we readily admit that Adam's safety is of utmost importance, so too is letting the family be together for dinner and breakfast! For many boring and detailed reasons I think this is genuinely a trend upwards for him and not some underlying problem, and we believe he is safe. But they did send me home with a monitor just to check, and strict instructions to come back if they are too low!

And, as I remind myself regularly when I feel badly for disappointing a doctor, Adam is alive because I disagreed with a doctor on day 4 of his life, so sometimes sticking to your instincts is a good thing.

From the inside

Darnit, I had really hoped to be writing this post from home, but we're still in the hospital.

Adam is doing really well, and has even been off oxygen--in air--since 5:30pm last night. I'm writing this at 10am now, so that's a lot of hours in air with acceptable, even good, saturations. There's only one small detail: he's been awake.

That may seem like a small matter, but the fact is that we can't go home until Adam can demonstrate his saturations stay above 88% in air when he's asleep. Even the most healthy person drops their sats when they sleep. We naturally breathe slower and shallower at times and our oxygen levels dip down, for a bit. Then, when our brain registers that they are low we all take a deeper breath, turn over or even surface and the sats go back to normal. For Adam to go home he has to show that he's able to do that himself too.

Last night we had high hopes, the highest unfortunately, but once Adam went to sleep his sats dropped to the low 70's and stayed there long enough they had to turn the oxygen on again. It went that way all night. So for now at least going home is not an option. We are hopeful that this is just the last leg of healing and soon Adam will show the doctors what they want to see, but there is no timing on it, and as with before, wishing won't make it happen any sooner.

But, hey, we'll wish anyway won't we? :)

Marking the Time

Happy New Year to one and all!

I was going to write a post last night but I was too depressed to do it, and to be honest tonight is not much different. But since time rolls on I might as well roll with it and do what everyone does or at least is tempted to do at this time of year: mark the time.

A new anything always seems to bring with it two things: the remembering of what was before and the looking forward to what is/might be coming. As I look back on the second day of 2012 (wow) I can honestly say I feel like the last half of 2011 should be thrown in the toilet. And, by the looks of it, the first week at least of 2012. I was really hoping that after all the trauma of the summer, with Adam's diagnosis of Leukaemia looming large in the forefront of everyone's minds and memories, we could end the year on a high note, in relative health and a night of good music with my husband to boot. But no, Adam's admission to hospital a week ago put an end to those hopes and now I am left with facing the fact that I can't wish or work or medicate or complain this into anything other than it is, a virus that is still causing Adam lots of trouble a week on and shows no signs of abating.

We have been praying, and we are still hopeful that Adam will turn a corner soon, but we ended up ringing in the new year on the medical ward amongst several other semi-hopeful families as I had desperately hoped we wouldn't. We have had some good times in our week though, like Adam and Caleb getting to colour, watch videos, snooze and play together and Mommy and Miss Leah watching scary movies at nighttime after bathing the other two and putting them to bed. I will always remember singing Adam to sleep two nights in a row and him handing me my glasses in the morning without me asking. I will also remember watching him leaning over things struggling to breathe. I think the hardest thing about all this is that Adam is a TANK. Anyone who knows him knows he doesn't stop for anything. If he stops, if he lays down or sits still, or looks flat, it's because he's really hurting. I don't like it because it seems to lay bare that everything we count on in life is subject to fail, including Adam and his strength. I count on his strength to get through chemo and beat his cancer--I expected that if something were to happen it would be part of that whole picture, NOT some random virus that knocks him off course.

But of course that's to put our trust in people and things rather than in the Lord. Yes, I know this too. And even while I rant and rave against what the Lord has had us all endure over the last half of the year, I also know that we welcomed our little angel Agnes Sophia Rose into the world during the first half of the year. And we also received the love, help, food, comfort, company and support of SO many friends and family during the whole year. We moved into a fantastic house and Adam joined the community of a wonderful school this year. Caleb learned to put letter sounds together to make words this year. Agnes learned to walk. Mom learned to sew (again!) and Dad spent his first nights of many in the hospital with Adam. Adam too learned to "talk" more and sign more, thanks in large part to Mr Tumble. In fact, Brian called me not too long ago to say that Adam had spontaneously signed and said "Adam loves Mommy. Daddy." So good can most definitely come out of bad, and our groaning hearts can most definitely find and dwell in peace if that is what they are willing to keep hoping for.

Well, here's hoping I don't write in a week and say we're still in! I hope and pray instead that Adam can breathe easy and normally soon and that he can start his last block of chemo asap (and the delay won't have had any negative effects on his cancer levels). I also pray that I will not measure what we receive against any random ideas I might be tempted to entertain of what we "should" receive. And my one resolution this year? To remember to be grateful more than I complain.

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.

No pressure

So this week has been pretty full, not least because the boys are home for the October holidays. Adam has to have toxicity checks every other day, starting this past Monday. These checks are designed to make sure the levels of chemo drugs don't go too high in his blood, and that his body is able to cope with the doses. They can either be done at the hospital or at home, though having tried one at home we are currently opting for the hospital. Funny how anything becomes an excuse to get out in this house!

Every two days someone checks his blood for white blood cells, neutrophils, haemoglobin and platelets, his urine for all sorts of things but mostly blood in it, his blood pressure (which shows how his kidneys are functioning) and his mouth. This is because methotrexate affects--read kills--the cells of the digestive tract, starting from the mouth all the way down. On Wednesday Adam was starting to show some areas of breakdown in his mouth, and it looked to be getting worse yesterday morning. Today, however, it is amazingly better, and so far he's eating just fine. We attribute this to the salt water rinses we have been doing, highly recommended to anyone else suffering mucositis from chemo. The rest of his numbers are good too, for now--except his blood pressure, curiously. It was high today, and now we have to keep a close eye on it to see if it is high or if it was a random occurrence.

Which brings me to the question of the day: Have you ever tried to get a blood pressure from an autistic child who doesn't really like to be touched? Even better: have you tried to get a urine sample from that same autistic child? Have you tried to do it daily? Both of them daily? Many times?? Well, now you know why I bought a bottle of wine at 10am today.

So that's our fun for the next two months--every day we have to get a blood pressure and a urine sample from Adam, who neither likes to be touched nor pees on command. Hmmm...this may just test my creativity to the limit. On the other hand, I will be putting it on my CV and hope that in the event I actually work again someday it might count for something!

After the morning (and before the wine!) we went to our favourite woodland walk, the one with the "loop-de-loops", and entertained ourselves by running full-pelt along them like a rollercoaster. If you have had the morning like I described two paragraphs above, you would have enjoyed it too! :)

finally

Apologies for this being much later than it should have been...

Well, Adam has now officially begun his third round/fourth month of chemotherapy. This one is called "Escalating Capizzi", named after a prominent researcher who did a lot of work developing this particular protocol to treat ALL. It will run for the next 8/9 weeks, depending on how Adam does, and if he needs a break at all it will take longer. With the completion of this block of treatment we will be over the midway point, the end of the intensive phase of treatment finally in sight. However, they don't call him "escalating" Capizzi for nothing.

This block is based around a drug that they give in increasing doses until, well, until the person can't take any more, i.e. until the side effects are so bad they couldn't handle any more. I don't know about you, but I can't think of anything that sounds worse, though the reality might not be as clearly awful as it sounds. The drug, if you are inclined to look things up, is called "Methotrexate". Adam has already had several doses intrathecally, which means as a shot into his spinal fluid, basically to prevent the cancer from spreading into his CNS (central nervous system). So far it still hasn't spread which is great.

The initial blood work from Friday said that there are no more Leukaemia cells in Adam's bone marrow, so he is still in remission. Everything looks good to our doctors here, but they have sent Adam's blood off to Glasgow for a special, more thorough test called a "Minimal Residual Disease" test which will tell us in more detail how well he is doing. The results from that should be back by next Friday. If it's anything like last time, it will be a bit of an anticlimax, in that it will just confirm what the docs here have already said.

So we press on, get to know Capizzi and hope and pray for Adam to not have such bad side effects that he suffers and his treatment is hugely delayed. Up to now he's only missed four half days of school, which is much better than I had hoped for. The kids have two weeks off school anyway now, and when they go back it would be great for Adam to join them. Of course, Caleb has a sore throat and all the kids are sneezing, but what else do you expect when it's October in Aberdeen? :)

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.

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!

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:

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 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 :)

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.

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.

Vertigo

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

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

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

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

The end of Round One

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

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

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

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

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