Archive for the ‘MRI’ Category

Relief, the Mirror of Anxiety

Tuesday, July 26th, 2016

My cell phone rang last Friday morning. My phone doesn’t ring much, as I communicate with most people in my life via text or email. For a moment, I looked in shock at the 813 prefix, a million thoughts careening through my mind, knowing that the news I was about to hear would either rocket me over the moon or plummet me into the depths of despair. No tumour. Tumour.

Looking at my sweet, wild, funny baby girl, I couldn’t imagine that anything that dark could be growing in her little noggin. Fear has a funny way, though, of twisting even the most benign thought, and planting the seeds of doubt.

Her scan was clear. The doctor called me to let me know ahead of the weekend, so I wouldn’t have to go through an agonizing two days, waiting for the Monday afternoon call. I was shaking, heart pounding, grateful and tearful. As we hung up, he warned me that this report wasn’t the “final” report, which would be reviewed on Monday afternoon. So, if there was some “tiny dot,” they may not necessarily have been able to see it. He would call me Monday if something was found, but otherwise I wouldn’t hear from him.

With this reassuring news in hand, we celebrated Craig’s birthday on Friday with champagne in the park. I felt light and free, watching my two healthy children running in the playground.

Somewhere over the weekend though, I thought, What if?  The seed quickly spreads its roots. And so I spent the day yesterday with my shoulders up around my ears, slightly breathless, jumping at every sound, and eyeing my phone fearfully. Someone did call me in the early afternoon, and I thought my heart had stopped for a moment. It was a wrong number. Slowly the afternoon passed, and there were no calls, and today has passed, and there’ve been no calls. So I can conclude, conclusively, that the scan is clear and all is well.

My relief knows no bounds. Yet, I’m still finding it hard to settle back into our normal routines and feel okay again.

Going for Skye’s MRI was, in itself, a traumatic experience. We’d made the decision some weeks back to do a scan, and so had no control over the timing of the appointment. It was made for 11:30 am, an unfortunate time of day, as the patient has to fast in order to be sedated. So no food after midnight. No breast-milk after 7:30. No water or apple juice after 8:30. There is no possible way to explain this to a wee one. All they know is that you are depriving them, and this is not something that has ever happened before, so it’s all very mysterious and upsetting.

Skye cried inconsolably for half an hour before even leaving the house, because I wouldn’t allow her to nurse. We arrived at the hospital early, to try to keep her distracted with new, unfamiliar toys in the Play Park. Gavin was happy to stay there playing computer games for an hour and a half. Never did I imagine that Gav would be one of the siblings in the Play Park, waiting for his sister’s appointment to be finished.

She remained calm until we had to change her into a gown. At that point, she let us know that she was not having it. It took all the tricks up my sleeve and unlimited iPad access to calm her down.

Eventually, we were called in for her to be sedated. This sedation business is not familiar to us anymore. Gavin hasn’t been sedated for an MRI since he was three, so yeah, it’s been awhile. Needless to say, kids don’t like it. They don’t like the mask and they struggle to get away. Skye let out one long, droning, cry until she finally fell asleep.

It certainly wasn’t the best morning of my life, but we made it through, and she was drowsy and cheery in recovery. After eating platefuls of food, she was back to her normal, peppy self.

Now I need to get back to my normal, peppy self. There are great days and not-so-great days.

I’m not the only “cancer mum” who battles the daily rise and fall of anxiety. I think most of us do, in one form or another. We live with the constant fear that our child’s disease will return. Unfortunately, I’m now in a small, exclusive club of women who have not just one child’s cancer diagnosis to fret over, but two or more. Some of these amazing women I count among the members of my own family. Some of these women have had to mother two children through treatment at the same time. Some of them have lost a child.

So despite having been given the genetic lemons, so to speak, I consider myself fortunate. Fortunate to be mother to a survivor. Fortunate that no cells have gone haywire in my daughter’s beautiful brain. Fortunate that my brain continues to harbour no tumours, although my grey matter often doesn’t feel as spry as it used to.

I’m clearing my head of thoughts of MRIs. The next ones will be in December, most likely, at which point both my kids will have to be scanned, assuming that at my next meeting with genetics, they’ll recommend a protocol to follow.

For now, though, it’s still July. It’s awesomely hot here in Toronto and we’ve still got six weeks of summer to go. Fortunately.

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As always, thanks to all the brilliant people in our lives who took the time to send me a text, or drop a comment on Facebook or here on the blog. The love and support that flows towards us is priceless, and I truly have such awed gratitude for all of you wonderful people. Much love!

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.


Four Clear Years

Friday, June 20th, 2014

Gav ice cream

Today is our D-day anniversary. Four years since the words, “Gavin has a brain tumour,” utterly exploded our world into thousands of pieces. Four long years of putting those little pieces back together in a way that makes sense, although nothing has ever been the same, nor will it ever be.

I learned yesterday that Monday’s MRI was clear!

Our clinic appointment yesterday was routine. I could see by the way that the fellow came in and started chatting casually that she didn’t have any major news for me – I assume if there was something dire to be shared that there would be some sort of observed protocol, not “Hi, how are you guys today?” But prior to her entrance I allowed those fearful thoughts a moment’s notice and found myself shaking and on the verge of vomiting. Thankfully, my mother was there to keep it together with Gavin and kept him busy with colouring.

My stress was needless, all is well with scans, although all is not well with Gavin. I had a long talk with his oncologist about what we could possibly do now to try to bring Bean to wellness. I left with a few more thoughts and have decided to try a new medication which might help. She described his current condition as “annoying but not tragic.” I can see the truth in those words. This chronic illness can be exhausting to manage, but at least we have good days. We are not at the end of our rope, going home on palliative care as so many little ones I know have. I know many families who would be happy to walk in our shoes for awhile.

The past six months have seen me suffering a great deal of burn-out with managing Gavin. It’s hard to feel that everything will be okay when things are so consistently un-okay. I hate going out to run an errand and then getting a phone call that Gav needs to be picked up from school right away. Chores left undone, groceries abandoned, and classes unattended have all stacked up to make me feel that finding any sort of routine for him or me is completely impossible. And yet, I still strive to do this, and we celebrate every birthday party and play-date he is able to attend.

Speaking of celebration – we had a fun gathering at the park yesterday with a bunch of Gavin’s classmates. The ubiquitous ice-cream truck was there, and Bean has long fantasized about eating one of those mystery-ingredient soft-serve cones. He’s been asking for years, and I finally caved yesterday. He was so excited he literally jumped for joy, and while eating it said, “This is the best day of my life.”

Actually, precious boy, it wasn’t the best day of my life, obviously that day was September 3, 2008, otherwise known as your birthday. But it was definitely top ten!

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…)

Sigh of Relief

Tuesday, January 24th, 2012

The results are in and Gavin’s MRI from today looks great. We are busy celebrating at home while Gavin has a well-deserved rest after a busy day.

As ever, many thanks to our family and friends for your never-ending support and love. We feel incredibly lucky tonight!

Feeling Magnetic

Friday, August 26th, 2011

You would too if you had been for two MRIs in one week. My faithful readers may remember that I’ve got a wee genetic mutation that apparently disposes one to pediatric malignant CNS tumours. Take note, though, of the word pediatric. No one can tell me for sure if a brain tumour is going to pop up somewhere in my future, but I’ve been told it’s very, very doubtful. There does exist a possibility, however, of developing benign nerve sheath tumours called schwannomas.  The possibility is also quite small, but is there. (more…)

Over the Moon

Wednesday, May 18th, 2011

Once again, the clouds of scanxiety roll away and we are left content with the knowledge that Gavin’s scan has come back clear. NED. So we wait for another three months to pass and then return to MRI. (more…)