Recharging and Gearing Up Again

I have gotten messages from several of you, checking in to make sure I'm okay because I've been quiet over the last week or so. I am so very lucky to have so many wonderful friends and family who care about us and always appreciate the messages. I have been quiet because we had few commitments over the last week and we all needed recharging. 

Ollie chilling out with soup and How to Train Your Dragon.

Sometimes even a warrior needs a nap.

Lots of Beyblade battles happening with Mom, Dad and Abby. He always chooses the best Beys for himself! ;-)

Lest you think it's all fun and games, we were thrilled to have Mrs. Sherri (Cranston) start teaching him at our home on Monday. The two and a half hours sped by and he enjoyed his time spent with her. Sherri (who taught Ollie as a substitute for the last two months of school last year) said she believes that the universe brought her to us to help and we know that she was heaven sent. She'll be with us for five hours a week as long as we need her to help us ensure that Ollie is ready to rejoin his class in September in grade 3. We are also grateful to Team Ollie including Mrs. Philippe the principal and Mrs. Didiomete, his homeroom teacher who is helping us to keep him on track with his class. Mama is providing the French instruction for now so she can practice her French, too!

Abby needed a mental health day yesterday and found ways to relax. Self-care is important. Mama could learn from her!

 
We have also been gearing up for this week of CT and PET scans, blood tests, dressing changes and meetings with social workers and psychologists. We're also shining up our armour for next week to start round 3 of chemo next Tuesday the 21st.

The very patient VAT team who change his PICC dressing weekly with CHEO nurses and Daddy helping to keep him calm and still today.

Last weekend, Mario had help from dear friend Vic to finally put things right in the laundry area, while Jenn helped me to pack up Christmas and put it back in the attic.

Meanwhile, I have spent time doing a lot of reading and watching videos about childhood cancer and lymphoma lately. Lots of survivor stories, which I love and need as inspiration. Some days I feel like we've got this and we're killing it and other days I wonder if we'll ever get through it with our boy and our mental health intact. I'm going to share a few quotes that resonated with me below.  This research helps me to mentally prepare for what I don't yet know about this journey.

Today we stopped by Candlelighters to pick up some gifts including an IPad that Ollie gets to keep and a Kindle Reader that we gave to Abby. They have some terrific resources and are helping so much with little things that make a big difference like free monthly parking passes at CHEO (versus paying $14/day). We are so very glad that the Hatoums invited us to help with their Lemonade Stand for Cancer a few years ago and that we have helped a bit more each year to raise money for Candlelighters. It makes receiving support from them a little easier and we know we will pay it forward again when Ollie is well again.

So all in all a good week so far. Off to bed as the PET Scan at the Ottawa Cancer Centre (General Hospital) is super early tomorrow! 

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 From Living With Childhood Cancer: A Practical Guide to Help Families Cope:

"There is no advanced training program for cancer. Like that age-old nightmare, you’ve shown up for a final exam having never been to class or cracked the textbook, except this time your child’s life is on the line. Even life’s A+ students feel ill equipped to deal with the trauma of treatment and its long-term effects."

"At the beginning, his physical appearance was hard on everybody. I took pictures of Anthony, just as he was coming into the intense phase of treatment. My sister said not only did he physically look bad, but he looked so sad. My mother was upset, too. She asked how I could have taken them when he didn’t look good. But I couldn’t just put away my camera for three years. I couldn’t only take pictures of the other two. At first, when I looked at these pictures, I would think, my baby, look at what’s happened. But now, I find those pictures empowering, because we’ve come so far. —Lynn"

"Take pictures. This experience is a part of your child’s and your family’s life. You do not have to ever look at the photographs, but if you do not take them, you will never have that option. They may also help your child process the experience later."

"Learn the names and faces of the doctors and nurses, and call them by name. Help your child learn the names, also. We had a mom who sometimes asked for outrageous things, but when she would call out, “Hey, there’s Miss Susan, how are you, can you help us? Look T., it’s Miss Susan.” I’d just melt and do whatever she needed. —Susan Zappa, a pediatric oncology nurse"

"There is little that can be done about IV alarms going off during the night and nurses entering your room to change meds. As a mother, I appreciate nurses who make an effort to move quietly and carry a flashlight. I worship nurses who make note of when the IV will need changing and get there before the alarm rings. —Sonal"

 

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