Hometown advantage

We made it home to Ottawa Sunday afternoon after a fairly smooth ride back. With our dear friend Vic once again following us back from Toronto to make sure we had help if we needed it, we stopped a few times en route. Because of COVID-19 virtually all public restrooms are closed, so it's almost impossible to find a place to pee! Thankfully we had Ollie's trusty commode in the van and I'm not ashamed to say I used it out of necessity! I have never been so glad we bought the van with those stow and go seats where we just put one down into the floor and used that space for the commode. We also had to stop to get Mint Chip ice cream to take with some medicine, but Ollie was disappointed that it was not Merry Dairy ice cream.

We got home late afternoon after about a five and a half hour journey. Ollie did pretty well, but in the last two hours we gave him morphine as his muscles were really hurting despite extra padding, reclining a bit in his seat and trying to get him to shift positions and stretch at each stop.

When we turned into our street, a beautiful socially distanced gathering of friends was there to welcome us home with clapping, yelling, whistling, signs, groceries, gifts and so much delicious food. It was a hero's welcome for Ollie and we were so touched by it. 

Our dear friends who took care of the cats and fish decorated inside, too and coordinated with other incredible friends to stock our fridge and pantry. Others brought food for the freezer or dinner the first few nights. Over the last days we have received so many expressions of love. From spring's first tulips to our first BBQ of the season, we've had a beautiful taste of homecoming and we were so thankful.

Gifts for Ollie have arrived from friends and family, too. Anything to bring him some joy. The one below is bigger than he is and he was thrilled with it and plotting to set it up on the backyard for family Nerf wars. I love that the fact that he is blind didn't even factor into this planning as he was convinced he could shoot us all by listening and figuring out where we are. 

Within minutes of arrival at the house he had his Mint Chip from the Merry Dairy down the street and was happy when friends later brought him Funfetti too.

Monday and Tuesday were unpacking and figuring out a new rhythm kind of days. Ollie sleeps upstairs in his or our room and comes downstairs for most of the day. 

Chewbacca the cat is clearly happy we're home. Our incredible neighbours, Mike and Barbara also took care of the beasts while we were away and sent the kids daily hilarious reports of them getting into trouble. Stephen's stories of Chewy' s mischievous acts also made them laugh.

I forgot what a stress reliever our furry friends could be despite the extra work they sometimes cause.

Ollie is getting stronger by navigating the stairs with help. At night if he's too tired, Mario carries him up to bed. He's 37 kg, so it's way harder than it used to be! By morning and after sleeping he's generally feeling stronger and can go down the stairs walking slowly or on his bum with support. He and I used to go down the stairs that way together (with him on my lap) when he was tiny and I had sciatica pain and couldn't lift him. Just another example of how things are in a crazy way almost frozen in time. 

He's walking more at home and with more confidence. He's also been calmer and less angry (steroids do that to him). Coming home was the right decision to help him mentally for this next set of challenges.

Wednesday we were back at CHEO for check ins with our oncology team, the weekly central line dressing change and radiation planning.

It was also honestly like coming home being in the Medical Day Unit (MDU) with all of the nurses and doctors we know coming by to say hello or to check in because they knew we were back and would need support. Our social worker also came by as did our palliative care team (pain management). Many congratulated Ollie on having a pizza named after him. 

We met our radiologist, Dr. Chan, too. What a patient and kind woman! Ollie had been NPO (couldn't eat) since midnight as we had planned for him to do the radiation planning while sedated under general anesthesia. Ollie is on a high dose (5 mg twice a day) of Dexamethasone steroids to cool down his optic nerve and help to hold back the lymphoma in his cerebral spinal fluid. This makes him very "hangry" so he was demanding to eat and imploring all of us to let him do the radiation planning without sedation. She agreed to let him try and told him if he couldn't do it that way, we'd try again tomorrow with sedation.

He was so happy and ate so much!

He did later have doubts about doing the planning without anesthesia, but daddy and I convinced him to try and we wouldn't be mad if he couldn't do it.

So off to the General and it's cancer centre. The technicians and radiologist could not have been a more well-oiled machine. They talked Ollie through every step, encouraging him and praising him each time he did what they asked. 

They made his mask and he was great until the end when they were doing the CT and he'd had enough of the mask holding him onto the table. But he got it done. No drugs. And he was still. He never could have done that 6 months ago! 

We're coming up a plan to give Ollie some drugs to calm him but not put him to sleep for his sessions of radiation as it will make it easier so he doesn't have to be NPO every day. 

 

His new third generation ALK Inhibitors were ready at CHEO today, too. One moderate sized tablet once a day. No cost thanks to Pfizer's releasing them to us on compassionate grounds. CHEO had already done the leg work to request this drug before we left for Toronto, so I am grateful for their foresight. Ollie took the first one this afternoon with no issues.

We know of three other families (2 in UK, one in Australia) with kids with Anaplastic Large Cell Lymphoma  taking this miracle drug and getting them into remission. One of these incredible moms sent me a link to an article where a teen with an incurable tumour who had fought for years took this drug and she is now on the way to being cancer free when they never thought it would happen for her. 

So I prayed over these drugs today, begging my God to make this the miracle we need to get Ollie well, too. I have faith and hope in the powerful combination of a team we trust, a miracle medicine, targeted radiation and the strength and determination of one amazing boy. Here we go...