Precision and Social Distancing

We have one week of radiation under our belts! Five down and only eight treatments left to go! 

On day two and each subsequent day this week Ollie couldn't wait to get there and get it done as quickly as possible. The days with afternoon appointments were harder because he wanted to get up, get to the hospital to get it done and hated all of the waiting around. Some days he'd wake up at 5 am and have to wait until 1 pm. It makes him very anxious and he obsesses, trying to control anything and anyone around him until he gets into radiation. Morning sessions were easier and going forward all of our appointments are morning ones, thanks to our diligent oncology coordinator rescheduling everything to hep make it easier for Ollie. 

We've had the same radiation team all week and they are pros. Each of them is great with kids, so patient and understanding, anticipating and catering to his every need. They also understand that when something works well, you just do it over and over to provide the child with much needed predictable patterns and processes. 

Ollie is no nonsense and wants to get in the machine and get the mask on as quickly as possible. Since day 2 he has literally done it all in one go. 3 minutes of treatment, 1 minute outside of the machine for out to be set up for the next one, 3 minutes in for the second treatment, 1 minute out, then 10 minutes for the final scan. He has to stay as still as a statue and does it every time. I am certain his teachers will be shocked at his ability to remain still  now since he has always been the kid who was constantly in motion. 

Sometimes he talks to us in the machine. Often he talks about Beyblades or plans he wants to make for the day. Sometimes he just sings along to his Bye Bye Lymphoma playlist (note: let us know if you have suggestions to add to this list) that we made months ago and play when we need reminders of our strength and courage. 

At times he gets impatient, but I either calm him down by taking to him while he's in the machine or he counts the seconds backwards each minute until the time is done. They always give him treats and high fives for doing such an amazing job.

Watching him get radiated is easier than I imagined. It's all very targeted. I sit in the control booth and can see the images and where they're targeting. I am not well versed enough to read the scans (yet), but am asking questions and learning. I am so indebted to the incredible team in Radiation South and to whomever invented these technologies that make this far more precise than ever. 

When we're all done, Mario comes to get us so I don't have to lift Ollie in and out of the van and risk hurting my back again. 

He's doing okay and working from home as needed (see photo below with his favourite new colleague). I am so grateful that he is able to take such an active role in Ollie's day to day care as this really balances things out for our family so that I can spend time with Abby, too. 

Until you have a critically ill or special needs child you really have no idea how challenging the simplest things can be. From helping him up and down the stairs, to assisting him to urinate or have a bowel movement (given he still can't see, his balance is off and he is fearful to do anything alone), to helping him to have a bath (he's so afraid of getting in the tub alone when he can't see, that we've bought all kinds of handles, grips and I usually get in first in my bathing suit to support him getting in and out and from behind while Mario washes him. Every little thing is an endeavor, but they are all labours of love. As he gets stronger and we figure out the blindness, it will all get easier. As he reminded me the other day, " You always say patience is a virtue, Mom."

Abby has been having a difficult time this week, too. She is stressed and wanting our attention and it is challenging because you need to put so much energy into the sick kid that you expect the well kid to just understand and wait for the attention. But anyone with kids knows they don't wait, they demand the attention now. So as usual we're struggling to find the best balance.

Ollie is still on the high dose of Dexamethasone steroids to keep the lymphoma under control until we know of the Lorlatinib drug and radiation are working. We are setting up scans next week so we hope to see that it is wiring and the Dex can start to really be weaned. He's constantly hungry and overeating on them. Trying to control his appetite or his aggression and tendency to want to control everything is almost futile. There are many battles. Some beginning early morning, so he's woken his sister with yelling a few mornings which made everyone's start horrible. We just keep breathing and trying to get past annoyances and stress.

He also has about 2 t-shirts and two pairs of shorts that he likes and gets agitated if we need to change them. While he's always been big for his age he's gained a lot of weight from the Dex and his skin shows stretch marks and thinning of the skin.

On a positive note, he is walking more and going up and down stairs now. He had a virtual physio assessment this week, so will start exercises next week and she is looking into a walker for him to build his confidence in getting around blind.

He often wants to go to the basement or deck for a "change of scenery", too.

Overall he's reacting phenomenally well to the radiation.We struggle to get him to rest he feels so well most of the time! 

One day he wanted to be in the kitchen with me and help me so he dried dishes. I've missed him being my little helper.

He's also been very upset about not seeing friends and family. We dropped some things off to a few friends last week and Ollie got to visit socially distanced from his seat in the car. This was not good enough. He wants playdates and sleepovers and Beyblade matches.

It became such an issue this week that he was begging us to have family friends over this week to do a scavenger hunt. So we arranged a socially distanced visit in the backyard (thank goodness our deck is 25' x 25'!) to enjoy some Ollie's Pizza from Gabriel Pizza (two pizzas for their family on one side of the deck and two for ours on the other). 

Masks were worn for the Scavenger hunt (prizes were Beyblades of course) to protect the immuno compromised. In the end it was  a lovely few hours for all.

Ollie even had a cat nap in.the hammock all bundled up in his cocoon.

Of course now he wants visits from his school friends, so this will be challenging to manage his expectations. We still have to keep our family safe and also to keep our dear friends safe (since Ollie and I are at the hospital daily, we are a potential risk to others if we bring something home). 

But we also have to balance that out with bringing our boy some joy where we can when we can do so safely. He hears the word no a lot and he doesn't like it anymore now than before cancer, but now we also need him to want to get well and feel like it's worth it to keep fighting the lymphoma.

So with three days off of radiation, we wish you all a very relaxing, if quieter than usual Victoria Day weekend!