Anticipation vs. Anxiety

Today's the day. The day of Ollie's MRI and lumbar puncture to determine if the Lorlatinib drug and radiation are working. I am, as Abby would say, "excervous". Excited that the day has finally come and our agonizing wait is nearly over, and nervous about what they will find. 

In all fairness, I shouldn't feel too nervous as I am certain that the new treatments are working. Oliver is happier, healthier and more active than he has been since he became very ill and was in the ICU in January. His attitude is better, his sense of humor is on fire these days and he's determined to do things he used to. 

Over the past week he's gotten physically stronger and insisted on walking more and even going up and down the stairs by himself (with a paranoid parent nearby to catch his fall if needed!). He hasn't climbed the stairs on his own since January. 

He's embraced the Braille learning and is now teaching Abby and Mario. He learned the first five letters of the alphabet in Braille in about 15 minutes last week during his virtual lesson with Leona from the Canadian National Institute for the Blind (CNIB). She laughed and said we'll learn as many more as he, wants to next week, but told me after that he'll have them all down within a couple of weeks with his quick brain. 

This is an enormous relief considering they tell you that radiation can cause learning disabilities, but all we've seen so far is that his intelligence and quick wit have returned! He's even doing significant math in his head and learning multiplication! 

We struggle sometimes to find a balance between letting him do normal, physical things and getting him to lie down and rest. His ankles get swollen and his lower back starts to hurt if he sits up or stands too much. They're also looking at his spine today in the MRI to see if he has a compression or fracture, which is apparently very common in kids who have had chemo.

He's still annoyed that he has to cover his PICC line to swim, but there have been several days where he's gotten past this and happily floated around our giant kiddie pool.

Last week he also surprised us by insisting he could play like a normal kid in the pool on his own and did this...

 This may not seem like much, but for a cancerous blind kid whose balance and fear have prohibited him from even bending down to pick something up off of the floor, this is unparalleled. He then stood up confidently and stably and was so proud of himself. So were we.

Even little things like feeding himself soup are getting easier.

He got an exciting present of a favourite treat from sweet friend Sharon who has repeatedly sent lovely and unexpected treats to my kids over the past 8 months.

He also participated in a grade 2 scavenger hunt and his thoughtful teacher, Mrs. D sent me the list of items ahead of time so Abby and I could gather them and Ollie could just search in a basket to make it physically easier for him. Fenton family note that he used his Octopus that you sent! Thank you!

Abby's Virtual Graduation was last Friday. It was bittersweet. Picking up her grad kit and not being able to hug the amazing educators who have supported our family like never before this year felt awful. Abby was upset all morning. Add to this a call about a family member who was injured and had to go to hospital and the stress was palpable here.

When the time rolled around to watch the virtual presentation, Ollie wanted to watch, so I narrated what was happening for him. Naturally Mr. Inquisitive asked a million questions. Abby got upset at him and uncharacteristically lashed out at him saying this day was the only one about her and she needed quiet. He got mad and cried saying he didn't ask for cancer and couldn't help that he was blind and wished he could just be normal. By this time all three of us were crying. Some days no matter how much we want to be positive right now we just get caught between cancer and COVID. 

When we all calmed down we hugged it out and then sat down to watch the rest. It was as lovely as could be under the circumstances.

Abby was awarded the Kiwanis Club Award, which is generally given to recognize positive attitude, dedication and commitment to one's community. She also got a medal for Character. Both very fitting for our girl, especially this year given all she's done to donate stem cells for her brother.

While we've waited for today to arrive, we've had some fun. We had our own CHEO Teddy Bear Picnic last weekend since they couldn't hold their annual event.

Ollie begged us for the game Pie Face and we stupidly agreed to buy it. 

It was actually worth it for the laughs, though. 

Again and again Ollie got pied, but loved it.

We parents...not so much.

The MRI and Lumbar puncture (to check if there are still lymphoma cells in his cerebrospinal fluid) went well today. Now more waiting on results. Might take a few days and we'll share when we can. So being the Momcologist that I am now, I am confident that we will hear good news and either be in remission and on our way back to Toronto in the next few weeks to finally get Abby's lifesaving stem cells, OR see a significant reduction in the number of cells and lesions and stay the course on the Lorlatinib for a bit longer to get there. Honestly he's been SO well that it is impossible that he isn't kicking lymphoma's butt right now. 

So please send those positive wishes and prayers our way asking for the news we deserve. This kid has fought so hard to be a contender and it's his turn to win. Love to you all and thanks for your patience as we wait for news and next steps!