Archive for the ‘Medications’ 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!


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.


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…)


Sunday, April 10th, 2011

As the weeks slip by, we are now beginning to live a somewhat normal life, but also to get a glimpse of what the coming months and years will bring medically. Now we watch, wait and maintain. Gavin is officially out of active treatment and back in the care of the neuro-oncology team. It has been an adjustment leaving our friends in BMT and starting Gavin’s maintenance treatment with neuro-onc. There have been many things to consider for his health, many tests to do, and many adjustments to be made. (more…)

The Oxygen Ladder

Sunday, December 12th, 2010

Over the last week, we have slowly climbed the oxygen ladder, using ever greater amounts and ever more complex machines. It is with caution and relief that I can say we are beginning the descent, rung by rung.

We started at blow-by, and proceeded to prongs, mask, skipped C-PAP, went to ventilation, and then the oscillator at 90%. Gavin is now off the ventilator, and is on C-PAP, which means that he is breathing on his own with some pressurized oxygenated air being blown through the respirator tube.

Today we will most likely have to make some adjustments to his settings but for now he continues to be sedated and stable. We (the doctors) are just trying to manage
the doses of his various drugs and find a system that works for him.

We are feeling more hopeful that Gavin may leave the ICU in a few days, but of course cannot foresee what will happen even for the next 12 hours. We are all just relieved that he is comfortable and getting the oxygen he needs, as well as starting some small formula feeds again, after nothing in his stomach for three weeks!

Many thanks to all of our beautiful friends who make this bearable with their constant love. Many thanks to the strangers who don’t know us but pray for Gavin every day too.

I would like to ask everyone who reads this today to take a moment to send a special prayer out for a little girl named Cadence who was with us on BMT and is now in the ICU. She is also in respiratory distress, and struggles through without her immune system intact, as her transplant failed to take effect. She will undergo transplant again later this week as a last-ditch effort to establish her bone marrow again. My heart breaks for her and I pray for her to be given the strength and resilience to get through this.

Medicine man

Tuesday, September 7th, 2010

I thought I’d take Erica up on her offer to post on her blog. Our lives have certainly changed a lot in the past three months and my role has become that of Medicine Man.

Gavin receives a dizzying number of medications now, and we quickly realised that the more of them that we can administer ourselves, the more freedom we would have. (more…)


Wednesday, June 30th, 2010

I’ve come to the conclusion that the human body just can’t sustain any heightened emotion for an extended period of time without trying to return to its normal state.  Fear, anger, pain, grief – these all fade with time because they have to.  Otherwise, we wouldn’t be able to continue to live.

We entered the hospital on Sunday June 20th, 10 days and a lifetime ago.  I’ve seen the delerious heights of renewed hope, only to plummet back to rock-bottom the next day as yet another piece of bad news is delivered.  Gavin’s recovery was off to a great start, he had an MRI the next day which showed no sign of remaining tumour, he woke right up from sedation, was extubated, and breathed on his own.  Then he talked to us and held our hands.  Hearing him say “mama” again repaired some broken bits in my heart.

But.  Then we realized that his swallow reflex had been effected by the surgery, we hope still that it will return to him in time, it just may take quite awhile and some intensive therapy.  This means that he cannot eat or drink except through an NG tube in his nose.

Then. He started exhibiting strange behaviour and was clearly in pain.  An emergency trip to CT showed hydrocephalus, a build-up of fluid in his brain.  His EVD, which drains excess fluid from his brain, and that we had hoped to remove already, was not working well enough.  His oxygen levels were low, and he needed to sleep with an O2 hood on for a couple of nights.  The danger of hydrocephalus has passed as long as his drain continues to work, but he spent two sleepless nights before recovering.

And then another CT scan showed us the next nightmare – a blood clot in the middle of his brain.  “We are on the knife’s edge right now,” said one of the neuro team.  As I’ve said before, no sugar-coating this stuff.  Our only recourse is to give him blood thinners, a bloody dangerous thing to do six days post-op.  Then the neuro team felt that he would benefit from having a PICC line put in, a kind of permanent IV in his arm.  Yet another dangerous and invasive procedure for him to go through, but he survived it, and is on his medication, and we will this clot to go away.

And now we watch, and wait, and hope, and hope to get through another night and another day.