Archive for October, 2011

Clear, Claire, Claro

Thursday, October 20th, 2011

Gavin and I, and Bubby and Da went to hospital this afternoon to meet with the neuro-onc team about yesterday’s MRI. I am happy and relieved to report that the scans of his brain and spine came back clear! There is no better feeling than knowing that this cancer has not returned and that I can now shelve that terrible feeling of dread until January. I think the doctor on service was supposed to call me last night – at least, that’s what I understand from talking to our contact nurse. For every other scan, we’ve  heard from the team either by email or phone that the scan was clear, so I was terribly worried that they were bringing us in to deliver the bad news in person. Sigh of relief, all is well. It was a short two-hour visit to clinic, everyone is pleased with Gav and we celebrated with seasonal pumpkin lattes and cookies afterwards.

Such emotional turmoil. On the one hand, I want to believe, truly and with my heart, that all is well, because I know that negativity isn’t helpful. But, then on the flip side, I want to be prepared for the worst, so I can’t help running the various scenarios through my mind, how I will react, what I will say and do. I will be stoic. No, I will fall apart. No, we will fight again and win. Swinging back to positive thinking, I have no reason to believe that Gavin has suffered a relapse, he exhibits no symptoms of such and we are very watchful.

The AT/RT community world-wide is small. I only really know about the children who are treated in North America, and I have been so saddened, of late, by the many relapses suffered by these little fighters. It seems almost weekly that I read of another child who has returned to treatment or succumbed to the disease. And unfortunately, in many cases, these children appeared to be entirely well just prior to discovering the renewed tumour growth. The problem with relapse and brain tumours, is that you very quickly run out of options. Surgery may not be possible again, due to the tumour’s location or size. If a child has received large amounts of chemo and radiation, it may not be possible to go down the same road again, as radiation is not a treatment that is always repeatable, nor is high-dose chemo.

When thinking of all of this starts to wear me down, I choose to focus on the kids who are doing very, very well, and continue to do so years out of treatment. I must remember too, that we are not truly an AT/RT family, we are in this extremely wee group of CRINET kiddos, so there’s not really a lot of data to say how this disease progresses. I must continue to believe that my Gavin will be well, that one day we will be standing proudly at his high school graduation, and university graduation, and raising glasses of champagne at his wedding.

For now, I tell him: You are such a strong and healthy boy. Your pictures looked great.


Tuesday, October 18th, 2011

I love autumn. Flaming fall leaves, pumpkin pie, jack-o-lanterns. As blue skies and sunny days give way to chilly nights, we Canadians celebrate Thanksgiving on the second Monday in October. Like our American friends to the south, the holiday is mostly about stuffing ourselves with turkey and potatoes, minus the Pilgrims at Plymouth bit.

This year, Gavin, Craig and I celebrated Thanksgiving with our family at the cottage. Bubby and Da were there, plus the Vancouver contingent. It was a weekend of spectacular sun and record-breaking warm weather. We hiked through Hardy Lake, canoed, picnicked, and jetted around in the boat for the last ride of the season. And stuffed ourselves with turkey and trimmings. Bean busied himself playing with everyone and carving pumpkin tea-light holders with Bubby.

Flashback to one year ago. We spent our Thanksgiving weekend preparing to enter Gavin’s first round of high-dose, and checked into hospital on the Sunday night, full of fear but also thanks for how far we had made it. Then, as now, Bean proved all the doomsday predictions wrong by sailing through his first confinement in isolation with spirits high. Then, I was thankful for each day and did not look beyond each 24-hour period.

And now, still, I try to keep the meaning of Thanksgiving in my heart and mind every day. I say a prayer of gratitude for all the gifts I have, for the Earth that sustains us and gives us life, for my son and husband. I am so thankful to be a young, healthy woman. For family and friends. I am filled with gratitude to have been born in a country that gives me the freedom and power to vote, work, own property, drive, and wear a short skirt should I bloody well choose to. I am eternally, eternally grateful for universal healthcare. So thankful that never in the midst of our pain and suffering, did we ever have to think, how the eff are we going to pay for this? (A reminder to Canadian taxpayers, yes, we get walloped, but think about your contribution more in terms of saving children’s lives. Feel better?) I am thankful for what wealth we have, although in our culture, it is hard sometimes to feel that you have “enough.” I am even thankful for my mutant genes, for making me who I am, and for making Gavin who he is too.

I also want to thank all of you. The people who read this and continue to pray for us and hope with us. The friends, known and unknown, who have made the difference to us in this journey. In recognition of those who have helped us along the way, I’m starting a “We Thank You” page on the blog and will be adding people’s names as I think of them. I also want you to know that Gav’s MRI is tomorrow morning. He goes into the machine at 8:00. Join me in visualizing a clear and clean scan. I hope to add another thing to be thankful for to my list tomorrow evening.

What do you give thanks for every day?


Tuesday, October 4th, 2011

G:  Hi, I’m back from the wedding!

Me:  Oh, that’s nice. Whose wedding was it?

G:  Mine, actually.

Me: Oh really? Who did you get married to?

G: Oh, I just married myself.


(With arm stuck down the side of the couch)

Help! The couch is eating my arm!! Somebody call the police!


A typical exchange between Gav and Daddy when Gavin is “fixing” something with his tools:

G: Thank you, I need the measuring tape! I’m going to measure it.

C:  Where do we need to make the cut? We want it to be about four inches.

G:  I’ll do the cut with my saw. There. And then I drilled it.

C:  Which tool do you need? I’ll put the screwdriver in your pocket.

G:  I think it’s not going to last. But I’m going to make sure. (Climbs ladder to “fix” something.) It’s not the right length again.

C:  Okay, we better cut it again.

G: Okay! (Climbs down the ladder again and “cuts” the wood with his saw.)