A Bean’s Life

It’s been a big week. Some notes:

1. Gavin had his MRI last Saturday, which was his first to be done annually. I haven’t had any news from that scan. It wasn’t the smoothest day for my boy. He’s deeply traumatized by the ongoing pain of IVs, and unfortunately had to act as pincushion for an unpracticed nurse. The second nurse, a seasoned professional, talked him down and managed to get an okay site. Things were proceeding well, until he had a panic in the machine and screamed to be let out. That’s the first time that that’s happened. We had to stop the scan, pull him out and calm him. After a breather, he got back in and finished. He felt better after pancakes and an Oreo milkshake, as all of us would.  He and I will be back at hospital next week for his kidney ultrasound and first clinic appointment with After-Care.

2. Skye’s MRI was yesterday. The appointment was for TWO-THIRTY. She had to fast the whole day, and was only allowed apple juice until 11:30. The order of the day was distract, distract, distract. She woke up at 5:30 and asked for breakfast. I played with her for two solid hours while Craig took Gavin out for breakfast. She was alright until after her gymnastics class at 10:30, at which point, she started to feel pretty wobbly. I think she thought if she just asked me for the right food, I would give it to her. “Mummy, I have fruit bar? Mummy, I want cashews. I need snack. How ’bout… hummus and crackers?” etc. I explained to her as gently as I could that for her “special appointment” the doctor said no food, but that we would get a treat as soon as it was done. After collecting Christine, our friend and nanny, to help, we drove to the hospital, helpless as Skye wailed the whole way asking for food. Thankfully, she was calm when we got there, distracted by new toys in the Play Park. The difficult bit was sneaking food for myself without her seeing me. In the end, the scan was done, a bit late, but no struggles after anaesthesia, which is always good. We were eating snacks and treats in the Atrium by 5:00. Needless, to say, a long day.

And now to wait for results. With no word so far today, my brain does this: They probably would have called if they’d seen something. They’ll call later to say that everything is alright. But what if the scan has just slipped through the cracks and no one’s had the time to look at the images yet, and something IS wrong, and then they’ll call me later to tell me that but I’ll be expecting everything to be okay. What if my phone rings RIGHT NOW – I’ll have a heart attack on the spot.

And so, the days after scans are long. Everything seems okay, but the fear that things are not okay is just…difficult to live with.

Here is a cute picture of Skye having her first skate last weekend. Something to distract me on this grey day.

This post was written in December, 2016.

There is a story behind this horse. This horse and her Barbie friend were given to Skye by a woman I admire deeply and hold in the highest regard for the level of care she gave my Gavin whilst he was in residence on the bone marrow transplant unit, 8B, at the Hospital for Sick Children. She is a doctor who fights for her patients with ferocity and adores them with a mother’s heart. It’s been almost six years since we left that unit, but I will never forget how she, and the other doctors there – and nurses of course – fought and prayed and believed in the Bean.

To backtrack a little bit, as it’s been ages since I updated here, this past fall I met with Cancer Genetics at the hospital to discuss our unique situation. How do we screen a child who may develop a brain tumour but hasn’t as yet? Who is responsible for the care of such a child? How often should such a child be screened and in what way? These are all questions that the doctors at Sick Kids have been having a big think about, and have come up with a few answers.

And they are: A little girl like Skye who carries a mutation in her SMARCB1 gene should be surveilled. She should have MRIs every 6 months of her brain and spine and probably whole body, just to be sure. She should have abdominal ultrasounds every 4 months, just to be sure there’s nothing going on in her kidneys. And her mother (yes, ME) should have these things too. But at Toronto General, not Sick Kids, because obviously, I am no longer a child, but a rational, able adult. On most days.

After a couple of months of mulling all of this over, I received my instructions. Skye was to be seen at Cancer Genetics Solid Tumour Clinic, with an appointment for abdominal ultrasound. And an appointment was made for an MRI in January. I was to be seen at the Neurofibromatosis Clinic at Toronto General – because they are the ones who best understand genetic changes and tumours. So dutifully, I went and met with my team, and discussed, and now await an MRI appointment, which may take several months. And I went and met Skye’s team, and discussed things some more.

The day of my wee one’s appointment was kinda cursed. We had a clinic appointment at 11:00, and ultrasound at 1:00. Toddler timing couldn’t have been worse, because, as you may know, 2 year olds eat lunch at 11:30 and go to sleep by 1:00. I tried to shift the timing, to no avail. I knew that ultrasound wouldn’t be pleasant, so I enrolled the aid of the trusty Bubby to come help me hold my daughter down while her abdomen was probed.

On the day, on the 8th floor, as we exited the yellow alligators, Skye and I encountered the lovely doctor mentioned above. She was thrilled to hear about how well Gavin is doing. Upon hearing that Skye wasn’t happy to be there that day, she marched us up to her office to find her a gift. And she pulled open a closet stacked high with toys. Toys that she keeps to give her kids when they are down, when things aren’t going well, when they are going well, when they need a break, a change, or just a moment of happiness in an overall horrendous period of their lives. From this horn-of-plenty we chose this marvellous horse and her Barbie companion.

The clinic appointment was fine. Skye’s new doctor seems a kind and interesting man. My babe was more interested in opening her new Barbie than anything else. And (for once!) our clinic appointment didn’t take long, so we had time to kill in which Skye kept asking for her yunch over and over. Which had to be denied her as she needed to keep her stomach empty for ultrasound.

At long last, Bubby, Skye and I made it to the diagnostic imaging unit. Within 5 seconds of being laid down on the table, my daughter lost it, as I reckoned she would. There was screaming, writhing, and tears. Her voice became hoarse from demanding that the ultrasound be stopped. But I knew that if we stopped, we would only have to come back, so had little choice but to pin her down, and try to calm her and keep her still, until it was finally done.

In those moments, I’m split: into two personalities. On one side: the mother who is protecting her baby, and who wants to grab her and run from the room, hurtling gurneys as I go. And on the other: the woman who must allow this to be, who must be calm and rational, and make small talk with the tech. And nod. And smile. And act like everything is okay, when what is happening is so, so far from okay.

After that half-hour of grinning and bearing it, it was over, and the images looked alright, and we could go. So we went to find lunch, mac n cheese and sushi, whatever my little one wanted. She fell asleep in the car before I even got out of the parking lot, and I so wanted to pull over and go to sleep too, because it’s all so exhausting at times.

I never received a report from the ultrasound, which I’m tentatively taking as good news.

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.

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

No, 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…