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.

Milestones

10 February 2012: Day 238--Finished with intensive

Today we are celebrating, and with good cause: Adam finished the intensive part of his treatment when the last dose of chemo was given at 3:30pm this afternoon. I wasn't sure it would happen after the suspense of the week and yesterday's drama, but it did. The only slight catch was that the doctor had to give the chemo as Adam only has a peripheral IV line just now, and there is a danger to his tissue if the line breaks and the chemo spills into his arm, but it all went very well and we were out by 4pm.

We started the party at Casa di Gelato on King street, with two of their famous ice cream sundaes--here are the boys ready to tuck in:

Mom and sister helped of course!!

Not much partying tonight as Adam has to spend one more night in hospital to finish up his IV antibiotics. He's out tomorrow morning though, and no looking back!

The top line of this post refers to my journal entry for today. It has been eight months--238 days--since Adam's diagnosis on June 18, 2011. This is not the end--he will start maintenance soon and that lasts for at least 18 months. He will need another port. He will be in hospital again someday soon enough. But it is both an end to the intensive, frightening, always changing part of treatment and a beginning of reclaiming some whisper of a normal life amidst the howling winds of the "long term illness". For now, we are content.

Well done Adam, you are a champion and a testimony to the power of living in the present and soldiering on to the end with your head held high and your cloud of witnesses surrounding you.

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.

addendum

I've been thinking about that hurried post I put up earlier--just shows I should not try to post anything in the 7.5 minutes I have before Agnes decides that "up" is the only word she knows!

I don't want to be flippant, and I felt like I was about Adam doing so well on chemo. I watched him tonight, and he looked fine until he started laying on the floor, refusing to get up and eat his snack and when I made him sit up then he threw a magnificent fit. We aborted snack, went in to brush his teeth and he climbed into bed very happily after only two bars of his bedtime song. Hmm, turns out he was tired. At 7:45pm. Hmm. That's odd.

SO, I know that he feels something--if not bad, then different--and that his lack of expression only means we don't hear about it often. But the boy has never lacked for body language, or facial expressions, or even Makaton when he's feeling full of steam--he does tell us what he needs and we do know how he feels most of the time. I am grateful for what he's been able to do and prayerful for those many people we know out there, with cancer and without, who have even more to deal with and do it gracefully. They are my inspiration when things are rough in our house--and we all need inspiration.

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.

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!

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.

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.

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 :)

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.

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.

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.

Mr Tumble made my day!

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

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!