Archive for 2016

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.

IMG_3601 (1)

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!

The Looming Feeling

Tuesday, July 19th, 2016

I’m doing busywork today. Organizing old papers. Vacuuming. Fixing a picture-frame. Anything, really, that might distract me from the thought of Skye’s MRI on Thursday, July 21st.  This will be her very first one, and I’m dreading it.

Contemplating Thursday morning has my abdomen tied up in knots. Do I have reason to believe that the scan will be anything but clear? No. And yes. Well, realistically, no. But the fear that accompanies each scan for my children is all-encompassing, and subsumes logic and rational thought.

Skye has only had, so far, the one cranial ultrasound, which didn’t reveal anything frightening, but took place more than a year ago. She is now almost 21 months. The age at which Gavin was diagnosed. On the recommendation of Gavin’s neuro-oncology team, we’ve now decided to begin surveillance MRIs, in the hopes of catching the beast early, or better yet, not at all.

Over the past couple of months, a few things have happened which are worrisome but not exactly telling. One day during lunch, Skye blanked out for several long seconds. It looked to me like an absence seizure. I already had an appointment lined up with a paediatric neurologist, just to keep an extra set of eyes on her, and coincidentally they were able to give me an appointment for the next day. My meeting with him was somewhat reassuring, although Skye wailed the whole time, making it difficult to chat. He was fairly certain that a brain tumour wouldn’t cause that type of seizure, but to check whether it was indeed seizure activity, he referred us to Sick Kids for an EEG.

I’m now in a place where a seizure disorder doesn’t worry me all that much. If that is Skye’s fate, it’s a condition we can live with. Brain tumours are not livable. My worry is always, always that. Every unusual head tilt or slight shift of balance, or unwell feeling stirs up powerful, sad memories.

The other issue which has cropped up and become more obvious over the past few weeks is Skye’s tendency to in-toe when she walks. (AKA walking pigeon-toed.) This little habit has become worse and worse, so that she very often trips over her own feet and falls. The number of falls she has daily is alarming. It wouldn’t be alarming to any other parent. He/she would probably just think, “Oh, my poor, clumsy, child.”

I can’t help but think back to the number of falls that Gavin took as a toddler. I had begun to wonder if there was something more at play several months before his diagnosis. However, I don’t know, and I will never know, if his tumour was actually there at that time, or if he just suffers from poor balance – as I do – and those tumbles were completely unrelated.

Of course, as time went on with him, he became ill. Lethargic, unhappy and unable to walk, every step resulting in a fall as his vestibular system was completely compromised.

Skye is not lethargic. Nor is she unhappy. She was ill last weekend, with a fever for 48 hours, and a slightly poky appetite. I would say that she’s still not over that entirely, but her spirits are, as always, wonderful. She’s my sweet, fun-loving happy girl, who gets up in the morning and demands to be dressed in a bathing-suit, just in case we make it to the pool.

Last week I took her to the physiotherapist, to try to begin to correct this in-toeing problem. The physio felt that the issue is due to her ongoing hip problems. She displays the classic symptoms: preferring to sit in a “W”, walking with feet turned in, and tripping and falling frequently. So that also is reassuring, an explanation for all these falls that is not the brain tumour explanation. My head knows that.

Unfortunately, I’m leading with the heart this week. And my heart says I can’t stand this. I can’t bear the thought of her diagnosis. My heart says, What will we do? How will we go on? Can we survive this again?

So I’m projecting to Friday, which is, of course, Craig’s birthday. I’m hoping for fast results. I’m hoping, praying, believing in clear. That’s all I can do.

IMG_3576

 

 

Six Years

Friday, June 24th, 2016

Gavin, Skye and I spent the morning in the neuro-oncology clinic to go over the results of Gavin’s most recent MRI. Once again, I’m overjoyed to report that Gav’s scans were clear. This means that we have another 6 months to go until the next one, at which point they will become annual.

SIX. YEARS.

IMG_3260 IMG_3294 IMG_3400 IMG_3404 IMG_3414 IMG_3253

Hard to believe that this silly, bright, fun-loving, goofy, stubborn boy is going to be 8 in a couple of short months.

Yesterday, Gavin was having a low day. Just one of those days where a few things happened that made him feel a little bit teary and down. As he and I talked it over in the evening he said,

“I don’t want to be different. I wish I was like everybody else.”

And I told him, “Buddy, everyone wants to be just like everybody else. But nobody is.”

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!

FullSizeRender

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.

 

The Days are Long, but the Years are Short

Sunday, January 17th, 2016

Are there more grown-ups or kids in the world? – Bean

My son asked me that a few days ago, and I spent a couple of minutes explaining that there are more grown-ups in the world, simply because we all spend far more of our lives being adults than we do being children. Plus, we’re all living longer than we used to, say, 100 years ago. I guess that made sense to him, because he left it there, and moved on to other things.

It brought home to me though, how very fleeting childhood is. In our society, we are considered “children” until the age of 18. The true end of kidhood though, seems to hover somewhere around the age of 12, with most teens hurtling out of adolescence as quickly as they can, ready to brush off the pixie dust and pick up the reins of their adult lives.

Now that Gavin is 7, I’m becoming more and more aware that the days in which he will continue to be a child are not many. It’s also been, somewhat sadly, brought home to me that I, myself, am contributing to the end of his little-kid days with my curmudgeonly behaviour.

Back in early December, we went to a family Christmas brunch that we attend every year. There is a Santa photo-op, and each child receives a gift from The Man in Red. Bean has always viewed Santa Claus with an awe close to reverence. At some Santa visits in the past, he’s been so nervous he could barely speak, like a fan-girl getting to meet her favourite celebrity. On this occasion, I urged him forward, and encouraged him to tell Santa what he wanted for Christmas. To my surprise, with a tight-lipped grin, he didn’t say anything. Again, I asked him if he wanted to tell Santa, but he just shook his head. I thought he was feeling shy, so I dropped it, and we snapped a few pictures with the jolly old elf before moving on to our bacon and eggs.

IMG_2422

The following week, on our walk to school, he was talking about Christmas and what he wanted as gifts. I was only half paying attention, lazily complacent, as he’d already told me what he’d set his heart on, a beautiful art kit in a carrying case, which I intended to get him as his Santa gift. Then he said something that caught my attention,

But there’s one other thing I want Santa to bring me, but I didn’t ask him for it when I saw him.

“Oh, that’s right,” I said. “What is the other thing that you want?”

I’m not telling YOU he responded. Santa knows what I want and you’ll find out on Christmas morning when he brings it to me!

Wow. A shot of amusement-tinged panic went through me.

I reiterated that he had to tell Santa what it was that he wanted though, and he hadn’t told him at the family brunch. Pushing further, I wondered out loud why he hadn’t wanted to tell him. He skirted the issue for a few minutes, before it all finally came tumbling out. He hadn’t told Santa what he wanted because was there, and he felt sure that his mum would be the epic killjoy that quashed his Christmas dreams, by telling Santa not to bring him what he wanted. Because he knew that I didn’t want him to receive the thing he hankered for.

What, you ask, was this longed-for item?

Why, LEGO, of course.

LEGO, the joy of children everywhere and the bane of a parent’s existence. LEGO underfoot in teensy bits. LEGO to be organized. LEGO getting dusty on every surface of your child’s room. Whole swathes of Pinterest dedicated to ways of keeping it orderly. Ever newer and grander sets required to keep upping the ante each year.

Let me just state for the record, that Bean has a fairly insane amount of LEGO, as many members of our family have been very generous to him. My efforts to keep it contained to one area of the house – his room – have been largely successful. I have spent hours sorting bricks and putting mini-figures into little plastic hardware boxes, each with a head and legs, if not their original head or legs. I have also, happily! spent hours putting together sets with him and playing the LEGO role-playing games dear to his heart.

And apparently, I have also complained, ad naseum, about how much LEGO he has, and avowed that NO MORE LEGO will be coming into this house, ever. Ever. I have threatened to “clean up” his LEGO while he’s at school if he doesn’t put it away himself. I have said things like, “Do you really need more LEGO, buddy?” when he’s expressed a yearning for a particular Minecraft set.

You can see why he didn’t want to tell Santa that he wanted LEGO in front of his dear old mummy.

I felt like an evil shrew trying to vacuum up my son’s pixie dust.

With a bit of fast talking, I convinced him to share with me the type of LEGO set he was after, and then made sure that he told Santa at our official Santa-session just before Christmas. On the day, he was overjoyed to receive a set from Santa, along with a couple of other sets from family members, including me.

I had come to the sudden, belated realization, that the years in which he’ll be asking for LEGO are short. At the age of 7, he’s still fully on board with both the parent-perpetuated myth of Santa and the magic of Christmas. I want him to go on believing in its magic for as long as he possibly can. Especially, as so many days of his childhood have been decidedly un-magical. Days of hospital, and drugs, and vomit, and pain, and procedures.

Some day, not too long from now, as a teen or young adult, he’ll decide what to do with the several tonnes of LEGO amassed in our house. For now, though, our home still resounds with Star Wars laser-blasts and the clink, clink, clink of bricks being sorted and assessed. Although all these little plastic bits set off my OCD, I’m okay with that.

I’m more than okay with that. I’m holding on to the magic. Holding on tight with both hands.