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, October 9, 2013

844 Days


Today is a momentous day. It is officially the last day of Adam's treatment for Acute Lymphoblastic Leukemia, and crowns the other 843 days since his diagnosis on 18 June 2011. He was just seven when he was diagnosed, and his sister was three months old. Now he is 10, and his sister spent the morning bringing me cups of "tea" from the playroom. Time changes and goes on, regardless of how much we are unable to comprehend or imagine it doing so. In particular, two years and four months goes on!!

When Adam was diagnosed I could not believe he had cancer in his bone marrow, the very centre of his physical being, and we couldn't see it. Now he's done and the question I often get asked is "is he cured?" That's easy to answer for a slab of pork, not so for a person. But for all intents and purposes he's in remission, and provided we stay away from a relapse for another 2 1/2 years he will be declared cured. This is Adam of course, and given his history there will no doubt be other issues we have to deal with, but hopefully ALL will not be among them.

I don't say this lightly though, as there are so many for whom it's not such an easy road, or a clear ending. I think so often of those we know who continue to battle cancer and/or have lost someone to it. It's become a personal thing to our family, and we will continue to pray for each and every one of them.

And though this might end up sounding like an Oscar's speech, I would be horribly short-sighted if I didn't say that we had a lot of help along the way, and would not have made it alone. Obviously the docs and nurses at the children's hospital are amazing, and my tears today with Adam's consultant are a testimony that they have done for us what we never could have done ourselves. They gave us back our boy. The pharmacist, the play staff, even Gary Seagraves the magician who I saw in the lobby all played a part in keeping us afloat! Our friends, the ones we met in hospital and all those who supported us from near and far--thank you for your care, for visits, gifts of food, and for faithfully asking "how is Adam?" Our families, who are waiting as I write for word of his results (which I don't have yet, but all signs point to Adam's blood being clear), they have flown thousands of miles to be with us and give us rest and physical help. Family is a good thing, and we are so grateful to all of ours for being our strength. Adam's school and teachers have been amazing, and always willing to put up with a barfy-post-lumbar-puncture boy, a hyped-up-steroidal-boy, and a grumpy-tired-chemo-ridden boy. The charities who have helped us, CHAS, Archway, ARCHIE, Clic Sargent, etc. It's good to know when a charity goes the extra mile and they all do. Finally, our churches, both St Andrew's and St John's, have given us tremendous and crucial spiritual support. Thank you for surrounding us when we needed it.

What I'm saying is that now that we are at an end of one stage, and have taken so much and needed so much, it's good to turn our minds outward again. It's good to join the normal world again, and I couldn't properly do that without recognising the full picture of what has been. So thanks for allowing me that closure!

Going forward, there will still be monthly clinic visits for a year, and six-weekly for another year, and then two-monthly, then three-monthly...so we are not exactly cut loose yet. But today, all that remains is a large ice-cream sundae for the kids, all three of whom have put up with SO much for the last 844 days. They are truly my little stars! And a bottle of bubbly tonight for us (and anyone who cares to join!!) Really I don't need any excuse to celebrate, but if I did this is a pretty damn good one indeed.

Monday, September 2, 2013

A wee update (literally)

This is such an epic time in our lives that I thought a blog update was in order.

We are now 10 days in to toilet training with Adam, who is doing wonderfully at his newly acquired skills. In fact, today he got FOUR stickers on his potty chart, that's FOUR times he used the toilet, and NO misses. He even went at school today for the first time, though he did hold it until 2:40pm!! The man has some control, and now we are finally getting somewhere with learning to let loose at the right time.

I know this is probably just a good day in yet a long and arduous road. But we really need this encouragement right now. And it's only 8 days until his last chemotherapy infusion at the hospital too, so we're almost ready to start breathing again. I think he'll know when chemo is over, the same way he knows when he's gone in the potty and feels good. It will be a wonderful gift to Adam and ourselves to be free and learn to be normal again.

Thursday, August 29, 2013

Holiday madness (or lack thereof)

A belated note about our first Brock family holiday in many years, to the lovely country of Germany, the town of Tuebingen, staying at the home of our dear friends the Wendte family.

We arrived to 35 degree heat, which is more than we ever get in Aberdeen, though to be fair the summer in Aberdeen this year was stellar: warm, dry and beautiful. We stayed at a hotel right next to the city swimming pool and entertained ourselves aquatically for a couple of days, meeting up with our friends in the evening. Then they left for their holiday and ours, staying in their home, began.

We had two weeks to rest, ride bikes, eat ice cream, peruse bookshops, play on different playgrounds, swim, drink iced coffee, ride some more, eat some more, swim some more...you get the picture!

Here are some of the highlights:

 Lunch at an open air cafe after our first proper thunder-and-lightning storm in years!

 One of the bookshop-enthusiast high points

 This is how we rolled: "The Mothership", Caleb on his own and Dad & Agnes

 The best pic of the kids ever...at the new botanical garden

Again at the botanical gardens...a great morning out

 Swinging German style: old tyres at the old botanical gardens 

 Wow, this stuff is cool! Agnes enjoying one of her many swims at the pool

 A view from the top: At the "Wurmlinger Kappelle" having a picnic

 Yikes!! Caleb after his first proper bike crash (everyone and everything largely intact)

 "Fishing" in the local creek on a "cool" day

Family paddle boat outing!

 Family picture at the Schloss (castle) overlooking the town

 Agnes perfecting her jumping skills

 One of the best playgrounds ever!!

That was a fun slide!!

So yes, a great summer, a great holiday and it's great to be back in the routine again now. Hope you enjoyed the pictures!

Celebrating in style

Every day is a chance to celebrate something, even the smallest marker or achievement. However, some days present the chance to celebrate a big milestone, and that day is today.

 This is my TEN year old smile! 

Our little Adam, now approaching "young man" status, has turned 10 today. His first decade is complete! What makes it even more of an achievement, on both his part and ours (as a family), is that on many occasions, not least the last two years and three months, he has flirted altogether too closely with his demise. He has survived a serious blood infection in his first 2 weeks of life, a massive open heart operation at the ripe age of seven months, several hospitalisations for pneumonia and the like, a serious burn injury, and cancer (so far!) He has come through them all with his characteristic steadfastness of character. I continue to be amazed at his strength, and ours (as a family), to go through what to us seem some big things to deal with, though they are peanuts compared to some.

Those candles are just too good to blow out!

We celebrated with some dear friends and the usual party fayre: lots of food, games, cake and great conversation. The egg-and-spoon race you see below was a hit (though the chickens who gave us the eggs were nowhere to be seen!) It was a lovely, if slightly cloudy afternoon and nice to be with friends. 


I did think at one point that--as usual--Adam may have enjoyed the whole event just slightly less than we did, however I think the fact that I consider his survival to be a family affair justifies it. If Adam is here for us all to celebrate, it's because he is strong and has survival genes, but also because WE are strong and know how to hang in there when the going is tough. We as a family have survived what Adam has had to endure, and we are all grateful for the moments to rest and celebrate.

And now for the best news, and the present that will keep on giving for a while: Adam is due to finish chemotherapy in just over a month's time!! That's right, on October 6, 2013 he will be a free man again, apart from the monthly clinic visits and blood work to keep an eye on things. That part doesn't matter as much as not having monthly infusions of toxic substances, or monthly courses of steroids that wreak utter havoc with his body, or nightly spoonfuls of terrible medicine either. It will all be done and we can't wait!

Then, I tell you, we will have another milestone to celebrate, and in style of course. And we will be celebrating with all those, near and far, who have contributed to not only Adam's survival but ours as a family. Because even when you are strong, you still need support, guidance, care and love to carry you through tough times, and I know we wouldn't be at the finish line (nearly) without it. Consider yourself one of the ones who have carried us through if you are reading this, and know that you will be part of the celebrations in October!

Tuesday, March 12, 2013

A belated birthday blog for Agnes

Well, it hasn't been a week yet since she turned two, so this is pretty good for me!

Last Wednesday our dear Agnes turned two, and we had a joint party with my friend Meg whose son Reuben shares the same birthday with Agnes, though he is 9 years ahead of her. She had a grand time playing with the big boys and blowing balloons all around the house. I think she may have been sliding down the stairs with them too, though I wasn't looking at that point.

It was a lovely day of seeing how she has bloomed recently, going from baby girl to little girl all in one fell swoop. We were marvelling this evening how funny and quirky her personality is, all the little things she says that make us laugh. It is a wonder to see a little person develop, and when that little person is gorgeous too you just can't stop watching!

Here are some pics of the day and our little princess...

 With her birthday buddy Reuben

Opening Auntie Meg's present...a huge stuffed sheep she loves! 

hanging with the boys 

And the obligatory birthday song sung in fine style!

Happy birthday Agnes...here's to many more years of watching you grow into a lovely little lady.

Tuesday, March 5, 2013

March Madness

An update is long overdue, and sadly this one will be brief.

We have been busy as usual of late, full into the swing of term time for Brian, work and events for Steph, school and all extracurricular activities for the kids. It is half way to Easter holidays here, time to start feeling the pinch of getting up early, packing the lunches, ironing the trousers. But not yet time to see the daffodils in full bloom--the shoots are starting to show, but it was still a chilly 4 degrees Centigrade here today and snow is forecast for this weekend.

In late January and early February we were all down again with a nasty bug, this time it was the flu. Never mind that we had the flu jab in Nov last year, apparently that doesn't mean you won't still have a chance of getting the flu! We were all "sick as thieves" for a week or so, but it passed. In the meantime we racked up memories of sitting on the couch all together, snuggling up, passing the tea and tissues and watching Laurel and Hardy episodes together. No better medicine, eh?

Instead of getting the usual symptoms though, Adam slept all weekend and then couldn't walk for two days. It was most likely an "irritable hip syndrome" from the flu virus, and it too passed quickly enough. But it makes you think when someone's mobility can go from 100% to zero in a moment. As usual, Adam weathered the storm better than his parents--good thing he had respite that week, so that we could recover for a day before carrying on with life!

Now Adam is threatening another hospital admission, this time with fevers and rock-bottom white cell count. We are hopeful but also realistically expecting to go into hospital sometime tomorrow if his temp doesn't settle, as his body can't fight anything at the moment so he'll have to have IV antibiotics. It is only a few months until the end of his treatment, so honestly at this point nothing can dampen our spirits!


Of course, true to form it's also Agnes' birthday tomorrow, so our little princess may have to spend her 2nd birthday a little more subdued than we had hoped if Adam is not at home. She won't mind though, as her sweet spirit seems to accept most things and move on--she is most often seen these days with a huge smile and a leftover tear from some very recent crying episode that is just as quickly forgotten! She is a dream, a joy, and a total crazy woman. Happy birthday early Agnes, thanks for bringing the zing to our family!


The party girl practicing her stuff for tomorrow!

And with that, night night!
:)

Monday, January 28, 2013

Cafe-O-Yay!

Yesterday morning we visited St John's church on Crown Terrace, another Episcopal church in our Diocese and one we've been wanting to go to for a while. It was a great morning, with lovely warm people and lots of laughs, during church as well as afterward.

Part of our Sunday morning ritual now is that one of us walks with Adam some or all of the way to church, while the other takes the younger kids in the car. This was my Sunday, and as St John's starts at 11am and we had left in plenty of time, Adam and I took our chance to have a little Nero's coffee treat together before the service.

Adam picked the table and I went up to order. I asked for my usual and then if the barista could make me a "baby latte" for my son. So when I came back to the table with one normal cup and one little espresso cup filled with milky foam, I thought Adam might be pleased.

Pleased is an understatement!

First, he started by moving the cup and saucer closer to his edge of the table. Then he picked up the spoon and so delicately began to stir the "coffee." Then he set the spoon down and picked up his cup, ever so carefully.

He tested it for warmth, then swirled it a bit just like the pros. 

Note the precision pinkie placement and supporting side fingers! 

Swirling merrily again... 

Getting the last drops down. I love the chocolate mark on his nose too!

Absolutely fabulous. Not only did he drain the cup, he did it in absolute adult style--stirring, testing, swirling, sipping and smiling. I don't think anyone in that cafe enjoyed their "coffee" as much as Adam did. And I couldn't resist a few laughs taking the photos. 

All in all, a very merry Sunday. 

Wednesday, January 2, 2013

Happy New Year!!

Just a brief recap of 2012...

This was taken exactly one year ago, just after Adam had gotten out of the hospital after being in for 3 weeks and over the New Year with a mystery virus. He had been on oxygen for most of that time, so that's why his cheeks are red (the tape from the oxygen cannula). Agnes was 9 months old and still fit into her snowsuit, Caleb was nigh unto 6 years old. We were walking along the Dee river after having lunch at the Camphill cafe:


THIS one was taken yesterday, on a lovely family walk in Kirkhill forest to celebrate the new year and NOT being in hospital. Adam is 9 1/4 and doing well, Caleb nigh unto 7, Agnes will soon be 22 months. All of us ran on the loop-de-loops of the "fun park" at Kirkhill forest, a place usually meant for bicycles but now a Brock family favourite for free-running! The smiles say it all:


We are grateful that 2012 was ushered in on the wings of illness and hospitals, chemo and baldness, long interrupted nights and weariness, but 2013 was ushered in on wings of feeling rested, having more energy, bone marrow that remains clear of leukaemia cells, nights that are becoming more settled, less sickness, and an end in sight to the two-year reign of chemotherapy in our lives. 

We are enjoying having time and energy to turn our attention to friends and having fun instead of worry. We are grateful for the friends and family who have made 2012 bearable, we look forward to connecting with friends and family new and "old" in 2013, and we mostly look forward to July and an end to the 24 months of Adam's chemo treatment and a beginning to the rest of his healthier life.

May love and health and joy grace your 2013, may hugs and laughter be your sustenance, and may you always know the love of Christ in all that you are and do.