The new normal

Before Gavin was born, Craig and I attended a one-day prenatal class at our birth hospital, in which we learned nothing apart from the fact that we would all most likely be having c-sections.  (Incidentally, I did.)  We had a little circle time where we all went around and talked about our partners’ attributes that we would like our children to have.  I remember inwardly rolling my eyes as each mama and daddy-to-be said things like, “I hope he’s got his father’s kind heart.”  “I hope she’s really sweet, just like her mother.”  Sweet!? Kind!? I mean, of course you want your child to be sweet and kind, doesn’t that go without saying?  Dream big people!  I think my response was that I hoped Gavin would be logical, rational, and really good at math like Craig.  Also a great swimmer.

Yes, we all want our kids to be special, we want them to achieve big things, be Olympic athletes and speak several languages.  Yes, I’ve dreamed big for Gavin, and I continue to dream huge as I hope that against the odds piled to the rooftops, he’ll be one of the very few lucky ones that beats this thing.  Despite wanting amazing things for him, I also just wanted him to be normal.  I wanted him to be a normal, average, happy kid, who is pretty good in school and pretty good at sports.

Both Craig and I have had to face the hard fact over the last week that things will never be normal again.  There won’t be a time in Gavin’s childhood that this horrendous cancer isn’t staring us in the face.  Assuming that treatment goes well, we’ll be returning to the hospital at least every three months over the next few years as we continue to check for recurrence, and battle against the ill effects of his treatment.

We had an amazing last weekend at home, with a visit to the zoo and to our local park. Gavin loved the elephants and following the big footprints around, and if a few people shot us looks when they caught sight of his scars, or wondered about his NG tube, we were happily oblivious.

The park was another story.  We had not been to the park since June, although we used to go there every day. I had to admit to myself that I’d avoided taking him there because I was scared. I was afraid of running into old acquaintances I hadn’t seen in awhile and having to explain everything.  I simply didn’t want to make myself a target for that much attention, although our neighbourhood is full of lovely people who I’m sure would treat us with nothing but sympathy. But it always seems that things you spend a lot of time dreading turn out to be fine. We ended up there at a quiet time, and Gavin was thrilled to be back. He played in the sandbox and cars, and even went down the slide a couple of times!

It was bittersweet to spend last weekend together, knowing that it would be one of the last times that Gavin is feeling okay for awhile, and that the next few months will be challenging beyond comprehension.  We tried to enjoy it as much as we could, although there were tearful times too.

It was an early start this morning as we had to be at Sick Kids for an 8:00 GFR, which is a test of kidney function.  Due to a clerical error, we were unable to get Gavin’s initial bloodwork done, so had to return to the oncology clinic to sort that out.  A half-hour later we were in the waiting room of nuclear medicine, and decided to try a topical ointment that is supposed to have a numbing effect for what they refer to in the biz as “pokes.”  Bean had already had a finger poke for his bloodwork so we figured it was worth a shot.  After a half-hour wait for it to kick in, we were ready, only to find that they couldn’t find a vein in the spots they’d numbed.  The technicians then tried to inject him twice, without success.  I was incredibly frustrated, because I’d already requested IV team to be on hand to take care of his IV or injection, only to be dismissed with, “We’ll decide if that’s necessary.”

Three hours later, the test was still not completed and Gavin was hungry, exhausted and had been poked three times already.  Finally, IV team was called and a successful IV started.  The test then went pretty smoothly after that, which finally brought us back up to clinic at midday.  Needless to say, not a great start to our second round of chemo.  I don’t think we finally got in our room until 4:00 in the afternoon, typical of the glacial hospital processes.  The only positive of the afternoon was that after a long nap, Gavin was in great spirits and excited to explore a new playroom on 7D.

Again, Craig is generous enough to stay at the hospital tonight, as I don’t usually sleep when I’m there, so I hope I don’t hear anything tonight as they run chemo while Gavin is sleeping.  Tomorrow and the rest of the week will be a challenge, but if all goes okay we can go home on Friday or Saturday for two weeks again.

Here are my positive thought requests:  no nausea, no allergic reactions, no infections, no fevers and please let us go home this weekend!!

Thanks to all for the messages, prayers, and love you all keep sending us.  We are blessed.

4 Responses to “The new normal”

  1. Susannah says:

    Hoping and praying for those things…. and more, each and every day for your Little Bean. Hugs and kisses to you three. loads and loads of love

  2. Karen says:

    I do get frustrated too after reading your descriptions of the medical “blunders”. I know it’s a great hospital but it could be better. I hope you have the opportunity for some feedback. Parents are a huge part of the team, not just in the aftercare part, but during treatment. I think they just don’t get it sometimes.

    I’m leaving those negative thoughts and now I’m going to concentrate with all my power on positive thoughts for Gavin. A healing touch from afar…love you.

    Aunt Karen

  3. Auntie Melanie says:

    Nothing but prayers and thoughts of love, and all good things for you, Craig and Gavin. I love you all xoxoxox

    all my love,

  4. sarah nixon says:

    Hi Erica,
    I have been checking your blog daily for weeks now. Thinking of you and Gavin often, holding you all in my heart.
    Georgia and I will be very happy to see you and Gavin back at our park – with no need to explain a thing.
    Soon, we hope!
    much love, Sarah

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