Four Clear Years

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!

The Great Leap – Part I

Disclaimer: This post is deeply personal, and not for the medically squeamish.

ultrasound2 ultrasound1No, your eyes are not deceiving you. Yes, Gavin’s little sister has currently taken up residence. She’s been baking away for 20 weeks now and making me feel elated. And miserable. And excited. And fearful. She will make her grand entrance this autumn.

I’ve been waiting a long four years for this little girl. In the hard days after Bean’s diagnosis, the future of our family was very uncertain. We’d learned that Gav carried a genetic mutation which predisposed him to certain types of pediatric malignant tumours – in his case, CRINET. On learning this, I then knew, without a shadow of a doubt, that I was the carrier that had passed it on to him, although Cancer Genetics assured us that it was extremely unlikely, I knew, that when it comes to our family and its history, that it was in fact, extremely likely.

It wasn’t a shock when I got the phone call that told me that I had tested positive for the same change. And it wasn’t a shock when we discovered that my mother did too, and my grandmother before her. In some ways it helped, because it proved that not every carrier ends up battling a brain tumour. It was still challenging news to digest: to be told by scientists that you have a genetic cancer-bomb ticking away in every cell of your body is not easy. It is even more difficult to then get up and continue to live every day with the firm belief that cancer is not going to happen to you. Ever.

Of course, the other information that we were given was that we would be taking a risk in having more children. Our offspring would have a 50% chance of inheriting the mutation too, and then of course, the increased possibility of a pediatric brain tumour. HOW increased this possibility was, was unknown. We were given a few options. We could:

  1. Get pregnant naturally, and then wait until 12 weeks into pregnancy and do a type of testing called Chorionic Villus Sampling. Based on results, we could “make a decision.”
  2. Pursue IVF. Create embryos, and then do genetic testing of said embryos before implantation. This way we could be sure to avoid passing on the change.
  3. Adopt a child.
  4. Not have any more children.

All of these options were considered. Many, many, long talks were had. Finally, together we decided that IVF would be the best, safest route for us. More than two years ago, we waded into the murky pool of fertility treatments. In our special case, the genetic testing would be done in the US, as it is not yet available in Canada. Of course, this meant that it would more than double the traditional costs of IVF treatments, but with the support of our family we wanted to try.

With boundless optimism we began the first round.

I remember feeling quite sure that it would work. I learned many things through that journey, not the least of which is that most of us really have no comprehension of how IVF works, what women suffer who go through it, and the immense toll that it takes on one physically, emotionally and spiritually. The reason for this knowledge gap is that most women who have undergone fertility treatments tend to keep quiet about it.

None of it makes for pleasant dinner-table conversation, does it? How can you possibly share the pain of the injections you must self-administer for weeks, the emotional highs and lows as your hormones go off on a mad tangent of their own, and the early morning trips for daily blood draws and internal ultrasounds. The egg retrieval and high hopes as embryos are formed, and then the crushing disappointment and loss when the round fails, and you must begin again.

Throughout the process, I learned that I am always an outlier. I developed a fairly rare complication called ovarian hyperstimulation syndrome. This means that my body did NOT enjoy hormone therapy. It can be potentially life-threatening if not treated properly. My ovaries produced a plethora of eggs. My abdomen was distended and I was miserable. But I was also quietly hopeful about my chances.

The egg retrieval procedure was a nightmare, and it shouldn’t have been. Again, outlier. In the end, though, I had 30 eggs to work with. Most women get less than 10. Over the next few days we were getting our embryo updates – we had 14 embryos to sample for testing. I felt very certain that soon we would be welcoming a baby.

And then I got the call. My doctor was so sorry to tell me that the testing had come back. In a completely shocking turn of events, all of my embryos were chromosomally abnormal. They did not all test positive for the mutation, but they each had some chromosomal change which meant they would never result in a healthy pregnancy. There was no point in even trying. The doctor was stunned and couldn’t hide it. He had no explanation for it, and had “never seen anything like it in such a young woman.” He said he wasn’t certain it was even possible for me to get pregnant naturally.

It took me a year to recover from that unbearable outcome. And then, spirit rallied, we decided to try one more time. We switched to a different clinic with a more helpful doctor. We tried a different protocol. Everything was managed much more professionally and I felt cared for. In the end, though, we got the same result, hyperstimulation, too many eggs, lots of embryos, all of them abnormal. It wasn’t a shock, but was heart-rending all the same.

My doctor was deeply sympathetic. She didn’t feel IVF would be successful for me, but if I wanted to try again, they could tweak the protocol. I could neither handle nor afford another round. I had only done 2 and felt physically drained and damaged. I cannot comprehend how women persevere through round after round, but I can assure you that it takes an olympic level of stamina and grit. My doctor also told me, in contrast to my previous doctor, that she felt quite certain that I could get pregnant naturally if I chose to take that route.

And so, The Great Leap.

Together, Craig and I acknowledged that another child was the missing piece from our family. Each of us has two siblings, and with the strength of those relationships in mind, we couldn’t imagine raising Gavin as an only child. We felt he deserved at least the chance of having a brother or sister, and so quietly decided to try. And despite my “advanced maternal age” of 38, a few short months later, I learned that I was pregnant. So much for the theory of Doctor #1.

Was this decision wise? 

To Be Continued…

Acceptance

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”

– Vivian Greene

The above quote has come across my path 3 times in the last couple of days. Days, which have been, in all honesty, difficult.

I am trying – trying – to come to a place of acceptance about the realities of our life. Gavin is home from school sick today, as he was yesterday, and the day before, and the day before that. As he has been 5-7 days of every month so far in 2014.

I was recently reading a post on a health website in which the author talked about living with chronic illness. He discussed his years-long search for a cure, for wellness, about doing everything right and still not knowing what optimum health is. And how he finally realized that he just needed to accept the truth of his situation and stop struggling against it. Acceptance meant being at peace regardless of the circumstances he currently found himself in. He said:

“I believe that it’s not possible to take truly effective action until we fully accept what is. But that’s not easy. In fact, it’s one of the hardest things we can do. Because to accept something means to let in all of the feelings and sensations that go along with that something. In the case of illness, it means feeling the grief associated with the lost dreams, the fear that we may never get well or that we won’t survive, and the isolation that comes from living with chronic illness.”

Reading that, tears are streaming down my cheeks. The grief of lost dreams. The fear that he will never get well. The isolation that comes from living with chronic illness. These I know, only too well.

It has now been two years since he has his first bout of cyclic vomiting syndrome, although we didn’t recognize it as such at the time. In these two years, the episodes have gone from every six weeks, to daily nausea, to a few times a week, to every six weeks again, and back to a few times a week again. He now vomits about once a week, but often feels too nauseated to get up and go about his normal business. He may suddenly feel quite well for a little while, and then out of nowhere, needs to lie down, or throws up, or very suddenly needs to leave wherever we are.

He is almost never able to eat 3 meals a day and is extremely thin. Countless lunches, dinners and snacks have been scraped into the bin untouched.

He has been scanned many, many times. The shunt has been explored many, many times.

It is this constant uncertainty of what will be that leaves me feeling unbalanced and off-kilter.

I was called to pick him up at school on Monday, as he had turned pale and was feeling sick. The first signs that an episode might be starting. When we got home I forced him to rest in a dark room. He then felt incredibly, hyper-actively well for the afternoon, but with no appetite. He threw up and went to bed dosed with prophylactic meds. He slept for 13 hours, and wasn’t well enough to go to school on Tuesday.

Yesterday, he woke up seeming quite well and ate a big breakfast. I would have loved to send him to school, but we had yet another appointment at the hospital. Dermatology clinic this time.

Sometime in March, two odd bumps appeared on the back of his neck. When I first noticed them, I thought they might be insect bites, and watched for them to go away. When they did not go away, I took him to his paediatrician. Last week. She agreed that they may be cysts, but thought they might also be swollen lymph nodes. She said with any other child she wouldn’t worry about it, but with Gavin… We decided to check in with dermatology, and thankfully we have a previous relationship with them, which is why we were able to see them this week instead of months from now.

Of course, last week I Googled “swollen lymph nodes.” I’m sure you can imagine what I came up with. Lymphoma. Cancer. Damn you, Internet. Why do you have to be such a frightening place?

Back to yesterday – the dermatologist examined his neck and said she feels they are some sort of benign epidermal cyst. NOT swollen lymph nodes. We will watch them, and if they get bigger, or change, we will biopsy them. But for now, keep any eye on them and go back in 3 months time to check in.

When the resident examined Gav before the staff came in, she asked me in wonder how I had even noticed the bumps in the first place, as they are quite small and not discoloured. Obviously, this young woman does not yet have children or she wouldn’t have asked me that. Every mother knows the keen eye with which we examine our kids. We notice that new freckle, the loose tooth, the eyelash out of place, the little scrape or nick that he got in the school-yard that day.

We left dermatology clinic with some relief on my part and went to get lunch. Gavin was unable to eat his bagel, but still insisted he felt well enough to go to school. So we flew through mid-day traffic to make it in time – and as soon as we arrived at school, Gav felt unwell again and had to leave straightaway. I am not proud of myself – I threw a mini temper-tantrum like a child, petulantly slamming doors and driving us home in a grey, foggy rage.

I have never, never been that good at changing plans on the fly or making sudden detours. I like things to proceed as I have predicted they will and it is hard for me to roll with the punches when they don’t.

Despite my sadness, I want to cultivate a sense of gratitude for what is possible and good in our lives.

He felt well enough to go to his gymnastics class yesterday evening. He ate a big dinner. Yes, he felt ill afterwards but he slept soundly.

He was well enough to come to a performance of the Lion King last Sunday night. He loved it.

I am grateful that he was at least able to get on the plane to go to Australia and Florida this year.

I am so grateful for every birthday party and playdate that he is well enough to be a part of.

Although I accept the truth of this moment, it does not stop me from continuing to research other treatments and trying new things in an effort to improve the quality of his life.

And this is a big one: he is still recovering well from his cranial surgery one month ago, the sutures look great and he has had no issues with them. We met with plastics last week and his surgeon felt there was no need to even follow-up with him. So in a positive turn, there is one less appointment to attend at the hospital.

Surgery. Check!

My son’s skull no longer has a large hole in it.

His surgery on Wednesday was a success and he is recovering well. I want, as always, to offer thanks to all my friends and family who sent messages of love and support and who have been with me not just during the last two days but over the last four years.

When a much-dreaded event has finally passed, it is only then that you realize how it has been haunting you. Jerking you awake with a start of fear in the middle of the night, anxious little voices worming their way into your conscious thoughts at any moment throughout each day. This surgery has now been booked for a couple of months, and not a day has gone past that I haven’t thought dire things about it. But it is over. Having leapt hand-in-hand over this particular hurdle, we are collectively moving on and hopeful that this will mean good changes for the Bean.

Wednesday morning Craig woke him at 4:45 to give him his last drink of water before his 8:00 am surgery, and soon we were all heading in to hospital in the darkness before dawn. Gav himself was in great spirits – we had spoken a lot about post-surgical expectations and he seemed to view it all with his typical adventurous spirit.

Check-in and pre-op went smoothly – with many activities provided by Child Life and Mummy, he was too busy to worry as we dressed him in his surgery jammies. We met quickly with Dr. Dirks, Gav’s neurosurgeon, who would be onsite just in case. The consult with anaesthesia went well, I’d had some concerns that a slight cold would postpone the surgery but his lungs sounded clear. After signing the consent, I got geared up in OR duds, hair in a cap, and accompanied my beloved child to an event that every motherly instinct was telling me to carry him screaming from. Gavin skipped and sang songs on the way, in the brightest of moods. He chose watermelon scent for his gas mask and climbed up on the table with no hesitation.

Once we had him comfortable and the mask fitted on his face, he began to slowly drift off as I gently talked to him, telling him I would see him on the other side. He cuddled Minnow as he went down. The moment he was out, the anaesthesiologist said, “Thanks, mum.” My cue to leave. I was escorted out by one of the nurses and headed to the surgical waiting room to meet Craig and check in with the teal-jacketed ladies of the Women’s Auxiliary.

The surgery was booked for four hours, so we went for breakfast. I always amaze myself that when I am at my most stressed and worried, I can still chat, laugh, or eat a sausage breakfast sandwich. But I have learned how to worry when worry is necessary. There is no point in getting worked up at the beginning of this kind of surgery. The absolute majority of the time these procedures go well, and spending the whole time believing that it won’t go well is definitely not the right attitude to cultivate. So we spent some time talking, and tried to sort out where we would sleep that night.

Gavin was booked to spend the first night in the ICU after his surgery, for observation. Unfortunately, there is no place in the ICU for parents to sleep – except these secret sleeping chambers that must be reserved ahead of time. Many times I have put our names down on the list, but never in all our stays has our case been deemed acute enough to be granted access to one of these. So we have propped on couches and benches, gurneys and chairs. And had some fairly horrendous sleeps. Staying by your child’s bedside overnight in ICU is a bad idea. You become exhausted and leave yourself with no reserves to battle on the next day. Sleep must be had, although it can be hard.

In this respect, we were lucky. The plastic surgery unit was not full, and I found out Gavin had already been assigned a room. There would be a bed for one parent, but not both.

After sorting out sleeping arrangements, I went the the special place I pray during each of Gavin’s surgeries. I must, extremely superstitiously, go there each time or I feel that I have failed in some way. This task aside, I felt ready to wait out the time in the waiting room.

Craig and I were both shocked to see Gav’s surgeon walk in the room at 10:30, when we’d thought the surgery would take at least 3 or 4 hours. I love surgeons who tell you what happened as they walk up, instead of ushering you into another room to chat. Dr. Phillips is a kind, incredibly reassuring character whom Gavin thinks looks like Kenneth Branagh, aka Gilderoy Lockhart from Harry Potter 2. He quickly told us that the surgery had been very easy, the PEEK implant had fit perfectly in place and they had also repaired with titanium mesh another area of his skull. He had called in Dr. Dirks to look at one area of concern, but he felt that everything was okay, so they quickly finished up and escorted Gav to the ICU.

As we waited to be taken to the ICU, I unexpectedly burst into tears. For like, 20 seconds. And then pulled myself together and ate a Kit Kat. Relief and sadness are close cousins. Finally, we realized that no one was coming to get us and we’d better just found out where they’d put our son. In ICU you must ring from an outside desk for permission to come in. All of that was hauntingly familiar. And it felt hard to walk down those halls that I cried and prayed in so hard 3 1/2 years ago.

We found Gavin in a shared room, already quite awake and apparently telling the nurse, Isaac, about how he’d watched the Olympic gold medal hockey game! He was fairly sleepy but coherent. After each procedure, I examine him carefully to see what’s been done and what other stuff happened to him in the OR. Often there are little things that no one ever explains to you, unexpected scratches or band-aids. And you are left wondering how your kiddo got that little injury. Gavin’s eyelids were (and are) quite bruised from the procedure, which I assume is from being positioned uncomfortably on his face. He had an IV in each hand and a band-aid from a separate poke in each hand as well. His face and ears were slightly bloody, and he was propped on his side so as not to put pressure on his sutures. They had to open the original incision site, so it is quite a large, horseshoe incision on the back of his head. His nose was bleeding from where he was intubated. And unfortunately, he also had a drain next the the site, which is a tube under the skin which pulls excess fluid out of the area.

Our first day in the ICU went quickly.  There is always a lot of care to do – cleaning, mouth swabbing, positioning, etc. Gavin is very sensitive about IVs and wasn’t thrilled to have two. Almost immediately, he wanted to play games, so we helped him hold the iPad and play checkers. He didn’t feel able to grasp a marker, so instead dictated what colours Mum and Dad should use in his colouring book. He was on a continuous morphine infusion for the day, which made him quite cranky, but finally in the afternoon, he was given permission to drink and eat. He inhaled a bagel, and then asked for another and ate most of that too. The day is a blur, and we finally tucked him in for sleep at 9:00. His nurse that night was from the plastics unit and would bring him upstairs first thing in the morning if all went well.

It did go well, and he was wheeled up by transport before 8:00. I slept at the hospital alone. It felt very odd to be in the room without my Bean with me. Yesterday, I’d hoped that Gav would feel better than he did, but he found the drain in his head very constricting and wasn’t happy to move around too much. So he stayed in bed yesterday and was demanding. He was very cross with mummy and daddy, but I told him he was allowed to be as mad at us as he wanted, and let him do whatever he liked. He was somewhat cheered by the new game and Lego set I’d bought him. Opening presents always lifts my spirits. But then he immediately wondered why there weren’t more prezzies. Ha. He didn’t eat much during the day and had an epic nap in the afternoon.

Of course this meant that he didn’t go to sleep until after 10:30. I was knackered and kept drifting off, only to be awoken by this little voice saying, Mummy, are you there? I can’t go to sleep. I’m trying and trying but I just can’t. So I would get up and read a few more pages of Harry Potter and convince him to try again.

This morning found him much more chipper, and Dr. Phillips was pleased with him and asked for the drain to be removed. We did that around 10:30 this morning, and trust me, that wasn’t exactly a pleasant procedure. Once it was done, though, Gav finally felt well enough to get up, have a quick bathe and get dressed. He spent the rest of the day doing Lego, playing games, and exploring the play-room. The Child Life specialist brought some visiting volunteers from Home Depot to our room and they helped Gavin build a boat, and gave him an orange apron that he was pretty pleased with. His energy seemed boundless – and I was exhausted, so at one point I begged him to just sit still on the bed and watch telly while I napped next to him. Being the good son that he is, he quietly watched Spongebob whilst I snoozed.

None of this really gets easier. At least now I’m used to it. I know how to break hospital days into half-hourly blocks of activity. I know how to exercise patience, because it is mandatory. I know that my kid can seem really, really bad one day, and I will wonder how long it will take him to get better. And the next moment he will be so astoundingly better that I’m in awe of his resilience.

This has got very long-winded. Bed is calling – we are probably leaving tomorrow. Many thanks again (if you read this far) for the support, prayer, positive thoughts and kindness. We are surrounded by love.

March 20th

As ever, I’m astonished at how quickly time sprints away, and here we are at the first day of spring. Which in Toronto means that it’s grey, chilly, and the dirty old snow and ice left over from this ridiculous winter is slowly melting to reveal a disgusting debris of cigarette butts and plastic bags everywhere. But, the tulips are pushing hopeful heads up in the backyard so it ain’t all doom.

I ended my last post with more hopeful prophecies about Gav’s cyclic vomiting syndrome. I wish I could report that we have quietly been living in wellness, as sometimes it’s exhausting just to explain how frequently and consistently Gavin is sick.

My last post was February 13th. He came home that evening sick and stayed home from school the next day.  Ups and downs over the next two weeks, then home sick again on the 28th. Well again the next day, barfing again on Saturday night – which meant, unfortunately, that Craig and I had just received our dinner out at a restaurant when Bubby rang to call me home. I braced myself for the beginning of a CVS episode, but he was kind of okay on the Sunday. Home from school Monday, went on Tuesday, home on the 5th. And the episode really began.

I don’t know what all of that feeling unwell was in the week prior to the episode, but sadly, this beast just seems to want to get its claws in him, and won’t let go until it’s run its course, and wrung every last drop of everything from him.

On March the 6th I eyed the calendar anxiously – we had flights booked to Florida for our holiday on March 8th. Obviously, we could only go if the vomiting called a ceasefire. We had 2 days to get over it. He is usually better by the fourth day but not always. I tried to change our flights. No dice. And to make things exponentially worse, I woke up on the 6th with a wicked attack of vertigo. If you have never had this – you don’t want to know. Suffice it to say that it feels bad.

Craig had to stay home from work to care for Gav and tried using his typical Method Man methods to keep Gavin hydrated. Without success, I noted with satisfaction. Not because I was happy through some weird Schadenfreude that he was not able to keep Gavin hydrated – but because someone else could fully realize how fruitless the task feels. And perhaps sympathize with the many days I’ve struggled through this alone with Bean.

The worst part of it all for me was that, for the first time in 4 years, when my baby needed me, I couldn’t help him or be there for him. I lay in bed, crying and riddled with Mum Guilt. On Friday the 7th, we agreed first thing that Gavin needed IV fluids. It had to happen. Craig took him to the hospital by himself and navigated the ER solo.

Text updates kept me informed of their progress through triage, etc. An IV was in within record time – less than two hours, woot! The staff that day saw no need to involve neurosurge in the discussion – another first, hurrah! So the boys were home by evening, Gavin considerably more perky with a full tank. And yet, the vomiting continued…until 9:30 that night.

Morning came. We were due to meet Bubby and Da at the airport at 2:00. Was all well? It was! I quickly chucked a few things in bags and we were off. As always, Bean was weak and tired for a day or so but rallied. Soon he was running along the beach, playing mini-golf, swimming and eating like a champ. Again we proved ourselves to be the 11th hour family – looking at each other and saying, “I still can’t believe we made it.”

Erica and Gav airport Family airport

So, obviously, I haven’t found a good solution to this situation. I’ve started to explore a couple of theories – one being that CVS is somehow related to food allergies, specifically dairy and wheat. I took him to an allergist and a scratch test revealed absolutely no reaction to either of these foods. I succeeded in stressing out my child though, clearly a win!

Our last meeting with GI clinic was two weeks ago – nothing new and exciting to report there. The doctor did say though, that there is a deeply psychological component to this disease, and if we can learn to manage anxiety and triggers, we might get somewhere. Another avenue to investigate.

There is a belief about CVS that it is a form of migraine headache – and recently Gav has been complaining more of headaches when he feels nauseated. A friend in Sydney heard from her chiropractor that he’s had success in treating the condition with chiropractic adjustments! He passed on to her details of a chiropractor friend of his in Toronto who may be able to help. Which is a very circuitous way of finding a chiropractor, but anyway. I spoke with this lovely woman and organized a first appointment, and then had to cancel it because Gavin was sick. And now have another one booked – so crossing all digits we have success there.

The final piece of the puzzle is of course, the shunt and cranial defect. The shunt seems to be doing its thing. Having a hole in your head is not ideal.

To that end – breathe, breathe – Gavin’s cranial surgery will take place on April 9th. It’s looming over me and causing many anxious thoughts when I allow myself to think about it.  Knowing that he will be in pain and have to spend time in the ICU again hurts me. But I remind myself of how much this magical child has overcome in his short years on Earth. We will probably be in hospital for 4-5 days and would love visitors when Bean is feeling up for it. I am trying to think beyond this surgery, to when his head will be whole not holey and he will no longer have to wear a protective helmet in the playground. This will be huge.

The Precipice

“Well, it looks like you managed to stop him from going over the precipice this time,” my mother said, quite dramatically to me the other day. (I know where I get my flair for theatrics from.) We were on the phone, and I was filling her in on the details of Bean’s latest illness, which kept him h0me from school on Tuesday.

In my last post, I made a lot of prophecies about an extremely healthy year ahead in 2014. So far my technique with the old crystal ball could use a bit of work. Gav kicked the year off in hospital, and then was well enough to go to school on the Monday. He had a doctor’s appointment on the 7th and received one of his jabs – which in turn produced a fever and 3 days off school unwell. No vomiting – phew. He had a “normal” week at school before we departed on our family trip to Australia on the 17th. Continue reading “The Precipice”

A New Year

It’s January the second, and we are all still full of rosy resolutions and lofty ambition for the new year.

2014! Exactly how did that happen? And how do we still not have household robots and flying cars? Admittedly, I am tapping out this post on a device that would have been completely Star Trek in the year of my birth, but I still feel that we have a ways to go to meet the future.

So here are my requests, should any scientists or inventors be listening. Flying cars would be awesome, but I’d love to get a handle on what we are doing to Planet Earth. We need to seriously, drastically change the way we live. Yes, us. Less plastic, more green. More companies like this: www.terracycle.ca

I’d love for all of us to just be a little kinder to and more accepting of our fellow humans. Why can’t we just sort out clean water and food for all? If we stopped pouring funds into weapons, and instead supported companies like this one, we just might be able to figure it out. www.buylifestraw.com

While we’re at it, better treatments for cancer would be awesome. I’m not even asking for a cure, just something better. I mean, chemo really, really, sucks.

And, can someone please invent a machine that safely and quickly scans my son’s brain and tells me what’s going on in there? Shouldn’t there be an app for that by this point?

These are the thoughts rambling through my head as I kill the empty hours at Gavin’s side in the ER. Yes, we’ve kicked the year off with an episode of cyclic vomiting syndrome, an awesome, uncureable condition that my only child has. As though a brain tumour wasn’t enough.

I’m listening to the IV pump click away as he rehydrates, and I know that once those precious fluids are in, he will leap up from his pale lethargy, shiny and new, until the next time this happens, and we enter the whole 3-ring circus again. The explanations, arguments with staff about IVs, debates with neurosurge about imaging.

So forget all my own petty resolutions about drinking less wine and improving myself through rigorous exercise. Yay, me, that’s all completely wonderful and everything.

My only resolution now is to find an answer to this horrendous condition. So far, research and experimentation haven’t helped much BUT, I have a few more tricks up my sleeve and I plan to use them.

2014 is going to be a great year, world. A year of wonderful health for me and my family. A year of wonderful health for YOU and your family.

Let’s all make some changes. Be creative, be good. Eat some kale. Give blood. Donate some money to a new cause. Donate some time to a new cause. Support science, and possibilianism. Crush bigotry and hatred wherever you find them. Allow yourself to believe it’s all going to be alright.

And of course, invent a robot, or a flying car.

Holding Steady

As October flies past, I’m looking back over the last few weeks with continued thanks that Gavin has been mostly well. His episodes have ratcheted down from daily to a few times a week. He manages them, having short lie-downs at school or home until they pass. I still have no idea what could be causing them, but with a clear MRI under his belt, our major worries are on the shelf.

October 7th found us in clinic, days which, as you know, usually leave me frustrated, anxious, or both. This time was no exception. One of the staff doctors in neuro-oncology has the special ability to instill fear and anxiety in me, partly due to painful memories, and partly due to the fact that I think he’s simply seen too much, and can no longer believe that everything will be alright, with anyone, ever. So though I should be leaving these appointments in a celebratory frame of mind, I often don’t, but feel the shadow of doubt cast over my certainty of Bean’s wellness.

Any cancer parent knows that our fears and doubts are our constant companions. We can choose to let them rule us, whispering in our ears day and night, or we can keep them in a small, quiet box,  firmly ordered to just STAY THERE where we can keep an eye on them, knowing if we open the lid even a crack, they will burst through and start scratching apart our joy.

To keep my joy intact I know I have to watch myself well, eat well, sleep well, go to yoga, visit the Buddhist temple a couple of times a week and breathe light. I need to surround myself with people who broadcast positivity and whole-hearted belief in Gavin. There’s just no room for anyone who does any less. There should never be room for anyone who does any less – but I consider myself blessed to have the most beautiful people in my life, family and friends both.

To remove one of those boxed-up fears permanently, we’re getting closer to an event that’s been on hold for the last 2.5 years. The week before last, I met with plastics to discuss Gav’s upcoming skull surgery.

To that end, Gav will have a CT scan this week to properly map the defect area. For anyone who’s wondering how we got here – you may remember that back in 2011 we discovered that Gavin’s shunt had been blocked for a very long time. (Can read here) The shunt blockage caused increased pressure, which was released in the small defect left behind from surgery. Over time, the pressure eroded Gav’s skull, which was eventually reabsorbed by his body, making a small hole into a very big hole.

Craig and I chose to wait until he turned 5 to address this, as we wanted to give his skull time to achieve its majority growth, which (apparently) it now has. The hope is that we will only have to do this surgery once, and it will probably happen sometime in early 2014 as it takes several months for the plastic plate to be ordered and delivered. I’ve also learned that if  we had to pay out of pocket for this device, it would cost us a cool $10,000, so once again give a cheer for Tommy Douglas and universal healthcare.

Once the surgery is done, I will have to adjust the way I parent Mr. Gavin. The past couple of years have been spent helicoptering him in a most spectacular way, and saying things like, Watch your head, Look out for that, and BE CAREFUL, over and over and over. I’ve removed sticks and sharp objects from other children’s hands when they’ve been a little too reckless with them, I’ve leaped across rooms to cushion his falls when he stumbled, I’ve spent $1,500 on protective helmets for his head (money well spent) and I’ve worried to have him out of my sight for even a minute, knowing that things going just slightly wrong could result in another traumatic brain injury for him.

Our meeting with Dr. Phillips of plastics at Sick Kids was brief – the surgery is not a difficult one for him and he actually did the exact same surgery last week. He doesn’t foresee any issues and the time in hospital will only be a couple of days if all goes well.

Let the countdown begin!

An aside about plastic surgeons:

If you’re like me, when you think plastic surgery you think big boobs and collagen lips and crazy Joan-Rivers-faces. I never really thought about what a pediatric plastic surgeon does – because obviously they don’t really do all that other stuff.  Here’s what they do: they repair holes in kids’ heads, they fix birth defects like cleft palates, they address vascular abnormalities and repair and rebuild what is not quite right, giving children a quality of life they would never have had without access to them. They do amazing work. Work that puts their nip/tucking counterparts to shame. It’s really wonderful to have so many teams of astounding surgeons doing work at Toronto’s Hospital for Sick Children, and as always, makes me grateful to live in its radius.

FIVE

Gav's 5th Birthday1

On Labour Day weekend, the Gavinator blew out 5 candles on his Iron Man birthday cake.

His wish was fulfilled to celebrate his special day together with the family at my parents’ cottage in Muskoka. In keeping with tradition, there were many presents to be opened and fun to be had in the water on the last weekend of summer.

Gav's 5th Birthday 2Emotions were running high after the failure of ICP monitoring and the immense stress Craig and I had been under after the previous few days in hospital.  But Bean took the whole episode in stride and was only concerned that he wouldn’t be able to try out the “Bongo” – the new water trampoline that Bubby had recently acquired. So although he had a fresh incision that wasn’t supposed to get wet, we solved that problem by wrapping his head in plastic wrap and topping it off with a hat. Bongo time!

Gav on dockBoys on Bongo

The rest of September has blasted past, making it hard to believe that the first month of school is now over. My most fervent wish for September 3rd was that Gav would be able to attend school and celebrate his  birthday and not be sick and enjoy all of it.

The first day of school he was off with cookies to share with friends and his new “spy-scope” to show the kids in Show and Share. For a 5-year-old, having your birthday on the 1st day of school is completely awesome. Not only is he now a “senior”, he got to be the Person of the Day!

Gav First Day of School 2013

The start of school this year was a bit chaotic due to the beginning of the Full Day Kindergarten program at Bean’s school, but the teachers took it all in stride and managed the arrival of 90 kindergarteners with grace.

I am immensely thankful that Gavin has the same teacher as last year, a lovely woman whom I know has helped him thrive at school. She is completely aware of his health issues and concerns, and has helped to put together a plan should he suffer any of his bouts of nausea at school. I’ve given her a yoga mat which can be rolled out in a quiet corner if he needs it. My hope is that I won’t be collecting him from school every other day – if he has a little lie-down, the feeling may pass.

On that note, it has been amazing that most of his episodes have occurred outside of school hours. We’ve had some in the early morning, which have dissipated at the very last minute, say 8:50, and have ended with me throwing Gav in the car and still making it to school on time. At other times, he’s felt sick in the evenings, still vomiting about once a week, but it is controlled with ondansetron and rest. Our absolute priority this year is to make sure that Gav misses as few days of school and activities as possible.

He is still having “the yucky feeling” daily, which means he has to lie down/be carried/avoid food. The problem here is that he is missing about a meal a day, so in the between time I am trying to stuff as many calories as possible into him. We are managing.

On Monday this week, Gavin had his regularly scheduled MRI of brain and spine. I didn’t have time to develop a huge bout of scanxiety, as the last scan was in August. Gav’s concern with MRI’s is that he still needs an IV to receive the contrast, and he really, really doesn’t want one. He may think that he is ready for it, and look as though he will soldier through, but when it comes down to it, it’s still very difficult for a little person to handle. It took some convincing to get him to hold out his arm for the poke, but we finally got there, after some tears and shouting. The next challenge was to lie still in the machine for well over an hour, but he super-starred it again. Once we were free and the IV out, he was satisfied with a cake pop and Batman balloon as consolation prizes, and I had him back at school by 11:00.

Usually, after a scan, I have to wait for neuro-onc to contact me with the results, but this time around I knew that I would be seeing our neurosurgeon Dr. Dirks the next day. Although I was certain the scans were good, it was still fairly nerve-wracking to have the doctor review them while I was sitting there behind him. He quickly assured me that there was no sign of tumour growth, and that everything else looks good except for Gav’s ventricles, which are very, very small.

He is not able to say what is contributing to Gav’s episodes, but the decision that we made was to go forward with the surgery to repair his skull. Having a large hole in your head just can’t be good for you, so I’ve set the wheels in motion for that surgery to happen soon, it will probably take place towards the end of the year. (Lord. Strength. Please.)

Otherwise, our only option is to start playing around with his shunt. Right now that doesn’t feel like the best choice – it’s an invasive surgery and he is not currently in any danger. If we were seeing signs of high pressure, it would be a very different story.

At the end of August, I couldn’t have predicted that we would get through September with Gav only missing about 2 days of school. I am so grateful. He is loving life!

The End of the Experiment

I am trying my utmost right now to quash some very discouraged feelings I’m having.

The good news is that we were discharged from hospital today. The bad news is that we are no closer to understanding what it is that is plaguing Gavin.

The past two days in hospital passed quickly, and we were lucky enough to have visits from loads of friends. (Thank you, thank you, lovely people!!) Gav feels that he has really hit the jackpot as everyone who came brought fun presents, so he has been busy bragging about all of his new Lego. Despite being tethered to a monitor, he dealt with all of it well, and loved keeping the unit volunteers busy playing with him.

Unfortunately, we were unable to get any useful information from the ICP monitoring. We had hoped that he would, at some point, feel yucky, so that we could see what was happening on the monitor whilst he did. Would the numbers be too high? Indicating a blockage in the shunt, perhaps? Or would they be too low, showing that his shunt is over-draining? But he didn’t feel sick the entire time that he was hooked up. And that was the first 48-hour interval in many weeks.

The window to keep the wire in is 48 hours, and towards the end of the time this morning, Dr. Dirks made the decision to pull the wire, as there was no evidence of unusual intracranial pressure reads.

Once the decision was made, some doctors came in to remove the wire and the stitches. Having stitches pulled out of your scalp is very uncomfortable, but Gav handled it fairly well, although he did take a couple of breaks to shout at the doctors, Hands off! Just get away from me for a minute! Ah, if only we could all express ourselves as honestly as children do. The finally last tricky stitch was gouged out of his head – so he now has two very nice incision scars to go along with all the rest.

As soon as he was bandaged up, he was back to his old tricks, and was happy to have some playtime with our little buddies Charlotte and Zy.

The discharge papers were soon ready, so I packed everything up, and prepared to leave with a heavy heart. I just felt, instinctively, that although he had been well, it was not to be a lasting well, and that as soon as we got home, it would be business as usual with him feeling terrible.

Sadly, my negative predictions came true. He and I came home and found that a package was waiting for him at the post office. (An early birthday present from Aunty Meaghan and the gang.!) He wanted to walk over to the shops, so we went off together, him very high energy, and me full of anxiety that he would tumble and bang one of his gauze-wrapped incisions. That didn’t happen – thankful for small mercies.

Upon arriving home he wanted to watch a movie and demanded pasta for dinner. The moment that he sat down to eat it, he got “the feeling” again, for the first time since Wednesday. Back to the couch, and then quickly thereafter to bed without dinner, and straight to sleep.

Neurosurgery now feels that there is nothing wrong with his shunt. But there is no other good explanation for why he feels the way that he does. And now, having been effectively dismissed by neurosurge, I am back in the position of watching, waiting, managing, without any medical professional who can shed some light on his condition.

The cumulative stress of the last couple of months was enough for me to have my own major meltdown tonight. I felt (for a short time) that I simply cannot do anything more. All of the appointments, medications, experiments, and holistic therapies have done nothing but exhaust me. I am trying to tap into some hidden well of internal energy to just deal with our normal daily life.

Without an answer or any course of treatment to take, I just don’t know what to do next. The only positive I can take from this is that he doesn’t have to have another surgery soon.

Tonight, I sat with him for a few minutes before he went to sleep. He didn’t even want a story, he was completely exhausted. His little face was troubled. When I asked him if he was okay, he said, Yeah, I’m okay. I’m just worried. I asked him to elaborate, and he said, I just really want to go to the cottage tomorrow and I think I’m going to be too sick to go. I assured him that we would find a way to go, no matter what happened. That we would celebrate his birthday together with the family.

None of it will be perfect, but nothing ever is.