Archive for 2014

Skye

Wednesday, December 10th, 2014

IMG_8154IMG_8199Baby SkyeIMG_8200

Here’s an overdue announcement: On October 29th, 2014, this wondrous little person entered the world. Her name is Skye Florence. She is beautiful, calm and sweet. She is a patient darling, but doesn’t hesitate to let us know she’s unhappy if she needs to. I am glad that already she knows how to speak her mind.

Only six weeks ago, she was still floating in the private universe of mum and babe, and now is here, our long-awaited little sister. When you’ve been waiting for something for many years, it’s almost surreal when the day finally comes.

As with any momentous life event, the six weeks of her life so far have been a period of challenge and change. Skye is a night owlet who likes to keep Mummy up for hours on end in the wee smalls. I haven’t yet figured out how to convince her that sleeping at night is a good idea, but I’m sure she’ll learn soon that dark means rest. At the moment, we are having lots of good chats at 4 am every night, when she is wide-eyed and ready to party.

We have all been trying our best to keep things as “normal” as possible around here – trying to get Gavin to school on time, and figuring out the logistics of little sister tagging along to activities like swim lessons and ball hockey. It’s all definitely a work in progress, but she doesn’t complain much.

Skye is a healthy little babe, but has already had her fair share of appointments in her time on Earth. Because she was a breech baby, there are a few issues that we are following, most importantly that one of her hips may be slightly dislocated. This is simple to follow with ultrasound and will (I’m sure) resolve itself soon.

So she has been subjected to ultrasounds and some poking and prodding. But we have decided as a family not to pursue ultrasound or imaging of her head. My original intention was to do regular cranial ultrasounds while she is still little, but I now believe that going on the hunt for tumours cannot help us in any way. We hope with all the hope we have that our Skye will not have to suffer as Gavin has done. And so, we choose to believe that she is well and will continue so through the long years of her life. Holding on to faith and rejecting fear. This is the hard work I have to do every day, for both of my children, and trust me, there have been some moments at 4 in the morning when it’s hard to hold on.

She’s making it easy to believe in her. I had forgotten how amazing newborns are. How strong and resilient and yet how incredibly needy.

Skye is sleeping the day away, gearing up for another night’s festivities. As she sleeps, I watch her dreams march across her beautiful face. She smiles and laughs, obviously dreaming of something sweet.

I don’t know how I chose the name Skye for her – it just came to me one day, many months ago. But I know why it is the perfect name for her. Because I always want her to know how limitless her life is. How beautiful and ever-changing and yes, sometimes stormy. She’s inherited her middle name Florence from me and from my mother, and I give it to her as a good-luck talisman from her Mummy and her Bubby, in hopes that the fortune we have enjoyed will also be hers. I believe it will.

 

Six

Wednesday, September 3rd, 2014

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

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

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

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

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

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

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

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

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

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

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

Perhaps he’ll even enjoy a piece of cake!

Summertime

Sunday, August 10th, 2014

I have very foggy recollections of the summers of my childhood. They stretched out forever, endless days of lazy, unscheduled lovely boredom. There was usually an un-airconditioned road-trip from our home in New York to Toronto, which meant a stay at my grandmother’s house, play with my cousins, and a camping holiday in the wilds of southern Ontario. There were weeks spent at some sort of sub-par day-camp and random tennis lessons here and there. Taken as a whole, those memories are good. There is beach, ice-cream and the smell of pines at campgrounds. There is play and bike-rides and swimming.

I can tell you, with total certainty, what I was not doing. I was not spending my days vomiting, headache-ridden, coming home early from activities, lying in a darkened room and visiting the emergency department. I went to the ER once in my entire childhood, and that was enough.

Summertime seems to me now like this fleeting epoch in which all the fun of warm weather must be jammed into a few short weeks, and if you can’t tick all the boxes by Labour Day, well, there’s always next year. I feel this way because last summer was such a write-off for us, in which I spent more days huddled indoors with Gavin than doing anything else. This past spring I determined that the Summer of 2014 was going to be Different. We were going to have the funnest fun! Gavin was going to be well and enjoy his summer holiday the way a little boy should.

Of course, today we spent the day in the ER getting some much-needed hydration on board. Tonight, Gavin and his Daddy are sleeping at the HSC. Peering out from under these dark clouds, it’s hard to see the sun shining.

I keep a detailed health diary for Gav, documenting his daily health and ups and downs, in the relentless search for patterns in how he feels. It’s a spreadsheet that reads, Good, Good, Good, Headache, Vomiting, Headache, etc. In July there were an unprecedented 11 days that read Good. He hasn’t had a run like that since last October. Making it through one week without an episode is an achievement.

Despite how grim that sounds, we have managed to stay out of the ER since March. That is a very long stretch for us. I’ve controlled his vomiting and kept it to a minimum with timely use of meds and strict measures around rest and eating. There are still a lot of questions and no great answers. I’ve tackled this issue from so many angles, and been on the receiving end of reams of well-meant, but ultimately useless advice.

At the beginning of July, Gav and I wrote down on little strips of paper all the things that he wanted to do this summer. They were things like Go Strawberry Picking and Visit the CN Tower. Strawberry Picking was interrupted by headache and vomiting, which meant a two-hour nap on the ground at the strawberry patch, enduring the stares of passersby as Craig and I idled with our phones until he woke up. We’d planned to visit the CN Tower this past Friday night, followed by a Blue Jays game on Saturday. Both events did not come to be. Which brings us to today, Sunday, which we spent at emerge rather than attending a family party together in honour of Gav’s new little cousin, Olivia.

Obviously, the loss of these fun times is disappointing. It was heart-breaking to have to collect him from a camp he attended at High Park, almost every day for the week he was there, when he had been looking forward to it since March. Our life is unpredictable in the extreme, with no way of knowing how things will go from one day to the next.

The only way to handle all of this is to Do It Now. There is no putting anything off until tomorrow, because tomorrow might be a total disaster.

I’ve learned that we have to carpe the crap out of this diem if we ever want to get anything done.

And with that as the family motto, this summer, so far, there has been THIS:

Feeding Ducks

and this:

IMG_4262 IMG_7823 IMG_4273 IMG_7838 IMG_7854

He has learned to ride a bike. He has been learning to swim. He’s had wonderful play with friends and long solo hours with his beloved Lego. He can now whistle and snap his fingers and play chess. He is doing all the things I always dreamt he would.

The one thing I want for him that still eludes us is health. I want him to never worry again that his trip to the zoo will be cancelled or ever shed another tear because he missed the Blue Jays game. I want for him to wake up every day and just feel good. And if he feels sick, I want it to be for a normal reason, that like a normal child he’s caught some sort of virus, but it will soon be over without a trip to the hospital.

If you live YOUR life in good health, please never take it for granted. Love your body for being so kind to you and carrying you through life with grace and ease and the occasional bout of food poisoning. Cherish the fact that you can make it through each day without having to lie down or throw up, and sleep soundly at night with the knowledge that your internal organs are doing right by you.

 

The Great Leap – Part II

Friday, June 27th, 2014

An early-morning conversation with Gavin:

G: Why do you wear this golden ring? (pointing to a plain gold band on the ring finger of my right hand.)

Me: It was Bubby’s wedding ring. She gave it to me for good luck when you were sick.

G: Did you have good luck?

Me: Yes, because you got better.

G: Does it still give you good luck?

Me: Yes. I get to snuggle with you every day.

G: If I were you, I would say that you have different good luck.

Me: What do you mean?

G: You have good luck because you have a baby in your tummy.

I am not religious. I don’t go to church and do not believe in God as presented by the major world religions. I do believe in universal energy. I believe in the power of prayer and good intention. I believe in the human spirit.

The road I’ve walked with Gavin has made me kooky-superstitious and an observer of signs.

I do believe that it is my fate to be mother to this child, and during the four years since diagnosis, I’ve been waiting for baby to arrive and complete the circle of my family, like a train holding at the station until the last passenger boards.

This pregnancy could only happen when I was willing to let what will be, will be. I had to stop trying to control the outcome with IVF and planning. That route only led to disappointment. When I opened myself up to the grand possibility  of great joy and great pain, then and only then could this come to be.

Let’s rewind to last February. Every woman who has tried for a pregnancy knows the heady thrill of those few days of uncertainty before finding out which way things have gone. And then, either the disappointment as you realize that another cycle has passed you by, or the ecstatic, buzzy high of, “I can’t believe I’m pregnant!!”

On February the 22nd, Craig, Bean and I were at the cottage. That day was the 13th anniversary of our meeting in London in what now seems somebody else’s life. The number 22 has always been meaningful to us, it is the date of both Craig and his father’s birthdays, and it is our aforementioned anniversary. It is a “lucky” number that follows us around in the form of hotel room numbers and show tickets and street addresses. June 22nd, 2010 was not only my father-in-law’s birthday but also the day the beast was removed from my son’s head. It feels right and fitting that our genetic mutation is found on chromosome 22. And it also felt right that it was the day I knew I was pregnant with our daughter. Today, Friday the 27th of June marks the 22nd week of this pregnancy, with baby doing flips in my belly.

We have all probably known first or second-hand a woman who “didn’t know” she was pregnant until she went to the hospital with abdominal pain, only to be told, “You’re in labour!” I’ve always viewed these tales with a high degree of skepticism, because in both of my pregnancies I knew I was pregnant from day one and have never been able to comprehend how disconnected one would have to be from one’s body to not know it. So on February 22nd I woke up feeling absolutely, 100% certain that I was pregnant. I told my ever-dubious husband, but he insisted on the scientific validity of a stick test to confirm. The next day we had hard proof. The plus sign in the window showed that I was certainly, definitely pregnant.

At home I calculated my due date, and laughed at the results. And did it again just to make sure. My due date is my birthday, October 31st.

In the normal course of events, I would be the woman crowing the good news from the rooftops, as I’d done with Gavin’s pregnancy. This time, with what seemed like endless bad luck behind me, we decided to wait. Wait until the first trimester was over and everything was “safe.” Wait for the results of preliminary testing. Wait for the results of chorionic villus sampling. Yes, we had decided to pursue early testing to discover whether or not baby was a carrier of the mutation.

Prior to getting pregnant, testing seemed like an easy thing to do. Test, and then… decide? Decide what? To terminate the pregnancy if the news wasn’t “good”? Talking about termination cerebrally is one thing. Actually absorbing the emotional trauma of doing it is entirely different.  I cannot conceive of the woman who would undertake that decision lightly. And as the weeks passed I realized that it was a complete impossibility for me.

For me to end my pregnancy because my baby “might” get cancer? To not take the chance of all the love, light, joy, and wonder that my child will bring to this world? It seemed inconceivable. And yet, I went for testing anyway. Of course, it was a horrendous experience, and due to holidays and lab bungling it took a full four weeks to get the final results instead of the promised two.

The initial results came in one day while I was in a Queen Street baby store shopping for my new niece Olivia, who had yet to arrive in the world. I told the owner that my sister was about to have her baby, and she said, “Congratulations!” It was impossible not to take those congrats for myself, as I unfolded tiny, dreamy, organic cotton onesies and girly patterned leggings. At that moment, amongst the natural rubber soothers and Sophie the giraffes, my phone rang.

Ringing phones are not good for my nerves. I am always on high alert for bad news. My heart pounded when I heard the voice of the genetic counsellor at Mt. Sinai. I relaxed somewhat at her cheery tone, and listened as she told me that they had the first results back, which revealed no chromosomal abnormalities in the baby. So in other words, the baby was “healthy.” She asked me if I wanted to know the sex of the baby and I said, “Yes!”

“It’s a little girl,” she said. Of course she is, said my heart.

The wise voice of my mama’s intuition knew that. And sadly, in that moment, it also said, this baby is a carrier. I cannot say how I knew, but I have learned to trust that voice when it speaks to me. I cannot tell you how it feels to be SO happy and SO sad at the same moment. Happy because finally you are here. Sad because oh I didn’t want to worry about you too.

The final, final results didn’t come in until later. It was a busy Friday evening and I’d given up on getting the results for the weekend. My parents had given me opera tickets and I was rushing to meet my friend Rachael who was joining me. In the shower, shampoo in hair, I heard the phone ringing and called to Gavin to bring it to me. Dripping, I heard the voice of a Mt. Sinai doctor asking if this was a good time. Is it ever a good time to hear bad news? I knew from her flat, sympathetic tone what she was going to say. So she told me. Yes, my baby carries the same genetic change that Gavin does and that I do. With that done, what else was there to say? I hung up and finished washing my hair, did the Gavin hand-off when Craig arrived home and headed out. We are very used to carrying on in the face of implosions.

I found Rachael outside of the opera house. She is about 8 weeks ahead of me in her pregnancy. With sadness, we discussed what this means and what the future may hold for me and my baby. But our talk was cut short as we realized it was time to go in. Wiping tears from our eyes, we handed our tickets to the young woman at the door, and her name-tag caught my eye. I was shocked to see the name that I would like to give my daughter. It is not a very common name and so seemed much more significant than seeing, I don’t know, “Mary” blazoned on her lapel.

In the time since, I’ve been trying to process what this means. According to geneticists, this means that for my baby, the possibility of having a brain tumour is much higher than it would be for another child. How much higher? No one can say. And yet, there is no explanation for those kids who just get brain tumours and don’t have any faulty genetic mechanism to blame. So I suppose, scientifically, I’m meant to be a realist and just accept that this is going to happen.

Fuck that.

I’m going forward with the firm belief that this little baby will never, ever have a brain tumour. She will come into this world a healthy little being and she will continue to be so. I need to believe that just as I believe that her big brother will never have a tumour again. I can’t know or predict all of the painful and difficult things that will happen to her in her lifetime. Pain and difficulty come to all of us. If they haven’t? Just wait awhile.

There are 5 of us carriers in our family who have yet to sprout undesirable growths in our heads. I’ve decided that none of us ever will, and my baby will be 6.

 

 

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!

The Great Leap – Part I

Monday, June 16th, 2014

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

Thursday, May 8th, 2014

“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!

Friday, April 11th, 2014

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

Thursday, March 20th, 2014

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

Thursday, February 13th, 2014

“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. (more…)