Archive for the ‘Kidney Function’ Category

At the Speed of Light

Tuesday, March 8th, 2016

Life seems to be hurtling past at a great velocity. Days and weeks blur and blend together, leaving me wondering, really, where does the time go?

We’ve now just about reached the first anniversary of Gavin’s return to wellness. I hesitate to use the expression “wonder drug,” but Gav’s medication has been life-altering for us. He hasn’t had a visit to the ER since last January. Going back over old posts, I see that February of last year was horrendous. Below is Bean’s report card from December of this school year. He went from missing over 20 days of school in the first term of 2014, to missing none in 2015. None!

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The past year has been one of huge change and also great achievement in this Bean’s life. Academically, he’s had great success in Grade 2, with his reading skills making a sudden large leap ahead from where he was stalled last year. He’s one of the best in his class in math, and his teacher reports that he’s serious about his work and takes responsibility for helping the Grade 1 kids. He has the same fantastic teacher again. He loves school and never wants to stay home. In fact, he never even wants to come home for lunch anymore, as he used to do. He prefers to stay and play with his buddies at lunchtime. I’ve managed to organize the few appointments it’s necessary for him to go to either in the early morning or outside of school hours.

After school, we’ve had kind of a punishing extra-curricular schedule, but have been busy making up for lost time. In the past, we struggled to get to swim lessons week in and out, and couldn’t organize too many things for fear of overtaxing him. For the last few months, he’s been involved in skating, swimming, art class, nature club, chess club, and ski lessons. He just recently decided that it’s all a bit much and has chosen to drop a couple of things from the roster coming into spring.

So although I’m pleased that he’s finally learned how to skate, the biggest and most welcome change is in his overall stamina. Previously, he would become drained so quickly, that it was too much to ask for him to go to swim lessons, and say, walk home afterwards. Any other child wouldn’t have had an issue with this. I used to have to drive him everywhere, even places that were only a ten-minute walk away, knowing that he wouldn’t have enough energy to get home from wherever we were, and we would end perched on the curb in tears, or piggybacking. He now walks to and from school almost every day, and to swimming and skating, walks totalling at least five kilometres a day. Last year, that would have been unthinkable.

He still has the occasional headache or feeling of nausea. We’ve learned on our most recent flights that he is prone to getting air-sick. These things pass, though, in an afternoon, and don’t lock themselves in for days and days, necessitating visits to the hospital.

I’ve also just belatedly realized that I haven’t reported on his most recent MRI in December. The process went smoothly as it has of late – we are usually booked in for first appointments on weekends now, streamlining the procedure to no end. Getting an IV is still a source of trauma for him, something that he is very apprehensive about leading up to MRI-day. We try to make it all bearable, but those days are a challenge. The scan, obviously and thankfully, was clear yet again.

At the next MRI in June, we will evaluate how often he will continue to do scans, and may move to yearly ones at that time or after his 8th birthday. He is also still being followed for kidneys and had a recent ultrasound to monitor kidney function. Since I haven’t heard a report about that I can only assume that the findings were within acceptable limits.

If the truth be told, some days, I find myself slightly at a loss as to how I should be spending my time, as I’ve become so used to constantly juggling appointments and being on-call for a small invalid. Actually, that’s a lie. There’s still not enough hours in the day, I just get to spend a few more of them on pursuits of my own.

Which brings me to another giant change that 2015-16 has brought. We now approach the anniversary of the arrival of our nanny extraordinaire Christine, our own personal Mary Poppins, who sailed into our lives last March. We initially brought her on board because both Craig and I were at our wit’s end, dealing with both the petite Skye and the ER’s revolving door. We just really needed an extra set of hands around here. They turned out to be very, very, capable hands.

Most weeks, she’s with us Mondays and Tuesdays, arriving before school with a cheerful “good morning” and ferrying the kids out the door. Gavin adores her and has said many times, “I feel like Christine is part of our family.” Skye doesn’t use those exact words but toddles to the door, making the sign for “play,” before happily saying bye-bye to mama, as they go off on adventures together. I still get to spend lots of time with Skye during the day, but also can focus on other projects. (More on this soon.)

If there are times that having a mother’s helper makes me feel rather la-di-da, I have to sternly remind myself of the five-year period prior. I may deserve a little la in my da.

The last year or so, I’ve often felt that many things that have been on hold or in development for a few years are coming full circle. I waited for Skye’s arrival for so long, and for Gavin to finally, finally, feel well. With those two major family shifts, I’m now able, at last, to focus more on myself and the greater goals for our family. Beyond just surviving each day.

With that in mind, we feel ready now to take up The Children’s Wish Foundation on their generous offer of a wish trip for Gavin. He was granted a wish while in treatment, but for so long, none of us felt ready to make any moves on it. When he was 2 1/2, and out of treatment, I explained to him that he had been given a wish to go on a trip anywhere in the world that he wanted to. He told me he wanted to go to China. He didn’t know about Disney.

Life’s been hectic. We had to manage his recovery from treatment, and starting school, and other surgeries, and his CVS. We’ve taken 3 (!) trips to Australia. I was pregnant, then had a newborn, then a baby, then… oh, you know. LIFE gets in the way of life.

Recently I sat Gav down and explained to him that he’s been given a wish to go on a trip anywhere in the world that he wants to. He’s 7 now. He knows about Disney. He told me he wants to go to China.

I am not entirely sure where his fascination with China stems from. He certainly doesn’t know much about it beyond the vaguest of vague ideas. I wanted to be respectful of his choice while still doing something that would work for the whole family. To the Internet! I showed him lots of stuff about this little city called Hong Kong. He thinks it looks pretty cool, so we now await approval of his selection, and will travel during the Christmas break this year. (All fingers crossed.)

Next on the to-do list: learn Cantonese and teach him how to use chopsticks. Easy.

 

Six

Wednesday, September 3rd, 2014

IMG_8041 IMG_8042 IMG_80456 years ago today, my wonderful son entered the world and changed my life forever. Today we celebrate all that he is and all that he has overcome in his few short years on Earth. Despite the seemingly endless challenges he’s had to face, he remains an (almost) normal 6 year old. He’s active, unbearably sweet, stubborn and prone to tears. He loves LEGO and Star Wars and art and hockey. He’s immensely curious about the world around him and loves to learn and explore. He  lives in the vast universe of his imagination, playing roles and creating stories.

As much as I wish it weren’t so, in many other ways he isn’t that normal little boy. He is set apart by illness, and hospital and knowing too much and experiencing too much for one small child. Earlier this morning we had a discussion about the price point of generic vs. brand-name ondansetron.

Today he is celebrating his birthday lying down on the couch and trying to avoid a trip to the ER. His only birthday cake today will be the little Play-Doh one he made this morning. He is putting a brave face on it, smiling for the camera, but he is heart-broken that his birthday must be spent this way, and that he’s missed not only the first but second day of school also.

He was so, so excited to start Grade 1 yesterday. Too excited. I knew, dropping him off, that the chances were good he wouldn’t last long. He’d already had 3 days of headaches and vomiting at the cottage – but managed to enjoy his family birthday celebration all the same. He liked helping to frost his cake but couldn’t eat it. We returned home early from our annual Labour Day celebration in order for him to get enough rest for the first day of school. He set his new Yoda alarm clock so that he wouldn’t sleep in.

Yesterday, he clutched my hand as he streamed into the school with the big kids for the first time. He high-fived his teacher with confidence, and I left, hopeful. Sunny late summer days seem full of promise, and I ran a few errands on Roncy, revelling in being alone for the first time in ages. I happened to glance at my phone as I set off to retrieve a couple of Bean’s birthday presents, and noticed sadly the missed call, voicemail, and texts. Sighing, I jumped in the car and headed straight to the school, getting there in time to hold the bin for Gavin to vomit into. It had been 45 minutes.

Upon arriving home, he proceeded to barf 12 more times throughout the day. His meds had no effect and hydration seemed impossible. I debated with myself whether to just pack him in the car and go, but he wasn’t as poorly off as he has been in the past, and by evening managed to hold a small amount of liquid and slept.

He has continued unwell all day but seems to be making moves in the right direction. Which means I won’t have to get him an IV for his birthday. And he may be able to attend school tomorrow. He is just dying to get some homework!

Still, I am worriedly musing about how to tackle this next. Last week we had some news – not unexpected, but upsetting all the same. Gav had his annual-ish kidney ultrasound and meeting with nephrology. In the grand scheme of kidney disease, we (as in the doctor and me) aren’t too worried. The doctor who examined him explained that, by the parameters that they judge kidney health, Gavin’s is generally good – or at the very least, acceptable. We have known for some time that the chemo he received damaged his kidneys – but we were happy that his hypertension has resolved without the need for further medication. However, on the ultrasound last week, his kidneys did not appear “normal.” They look like kidneys that have taken too many hits. The issue being that every time he has a vomiting episode, he becomes severely dehydrated and his kidneys take another knock. The only ways to protect them are to: keep him hydrated, and avoid medications which are toxic to his kidneys. Unfortunately, I hadn’t realized how hard ibuprofen is on kidney health, or if I had, I’d forgotten it. We have been giving Gavin Advil fairly frequently for headaches of late, but will no longer be doing so.

The hydration is a more difficult issue. He’s now having episodes every 7 days to 2 weeks. He doesn’t become severely dehydrated every time, but there is a certain general depletion that goes along with vomiting so frequently. So… what to do next?

It sometimes seems that there is not much we can do, but I’m still relentlessly researching, adding in new supplements, trying new medications, routines and any kind of snake oil I read about on the Internet.

The birthday boy is now putting together a new LEGO set from his Uncle Ryan. He still has a birthday party with his buddies to look forward to on the weekend, and judging by the fact that he is so poorly today, he should be fine by then. Silver linings. We have to celebrate everything in stages, knowing that if we take several goes at it, we’ll hit the target sooner or later.

Perhaps he’ll even enjoy a piece of cake!

Shaun the Sheep Saves the Day

Thursday, May 31st, 2012

First things first. After a very difficult day of blood, sweat and tears, we got Gavin’s scans done and the word has trickled down that they are CLEAR. After weeks of crushing anxiety and worry, I feel feather-light to know, with absolute certainty, that everything is fine, fine, fine. (more…)

Medical Stuff

Friday, July 29th, 2011

Summer is slipping through my fingers as it always does in Canada. Winter is eternal and the short weeks of summer fly past before you’ve got a chance to breathe. I have not been blogging much of late because we’ve been out enjoying the ridiculously hot weather we’ve been having, and spending a lot of time at Bubby and Da’s cottage in Muskoka. (more…)