Genetics

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.

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.

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

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.

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.

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