Courageous Counting

While this is a photo of the Sick Kids Hospital Atrium at night from the 8th Floor Family Kitchen in the Bone Marrow Transplant Unit, during the day this space is buzzing and coming up again. Clinics are open, surgeries are happening again and the Atrium is quite busy on weekdays. Unfortunately even here people are oblivious to the need to social distance and many times I've had to ninja around people blocking the path to the doors, elevators, etc. 

My little lymphoma ninja has still not been feeling great these past few days. Still having challenges with nausea, vomiting and diarrhea, although they've played with his meds and reduced all of those symptoms. 

He's had some petechiae (round spots that appear on the skin due to bleeding and often indicate platelets are low), but has not needed more plasma. 

His eyes have been bugging him because they're dry from radiation and his eyelashes have fallen out this time from chemo. Many panics from having eyelashes on his eyeball!

We got him his own ukelele and he's been happily picking away at it.

The Sick Kids clown, A. Leboo has been coming by each week to Beyblade.  I saw him coming into the hospital the other day in his regular clothes and almost didn't recognize him! 

Ollie's face and lips were swollen for a few days from water retention. That's easily fixed with Lasix that they give him in his line to have him pee out the extra fluid. Fluid intake and outtake are closely measured and his weight is taken daily to ensure he doesn't have any fluid imbalance.

He's wanted to snuggle more because he feels so rotten. We keep telling him you have to feel worse to feel better and he's almost there. It's Day +19 today and he's felt rotten most of those days. He's also been more emotional the last few days, having crying episodes over things that normally wouldn't phase him. We're in.the home stretch to feeling better and it's hard to hold it together sometimes, so you just have to let it all out to move on.

He's also had intermittent low grade fevers the last few days. It's freaky because this is also a normal and good sign of grafting, but before now anytime a cancer patient got fever it was considered bad and a sign of infection. They still take blood cultures each time he's feverish just to be sure it's not bacteria or infection, but he's on anti-virals, anti-fungis and immuno-suppressants to keep him from getting sick and rejecting the new stem cells. No sign of Graft Versus Host Disease, either.

Our 13th wedding anniversary was Wednesday. We saw each other for about 25 minutes during our tagging in/out transition in hospital. I got back to the condo and there were some flowers and chocolate as well as cards from Mario and the kids. They can't be brought to the hospital given the risk of fungi so I enjoyed them for a few hours at the condo. I had sent Mario pies. Romance, cancer style. LOL

Music therapy started well this week with Ollie playing guitar, but when he tried to sing, his voice was too hoarse from the mucusitus and he got upset and gave up. 

Toni and I finished the session with his favorite songs, but he was not consoled.

Yesterday Ollie said to me that he wanted to change his Make A Wish (he has chosen to wait until COVID is over to go on a trip to Atlantis Bahamas to swim with the dolphins) to instead give the money they would have spent in the trip to CHEO so that they could get their own Bone Marrow and Stem Cell Transplant Unit so that kids like him wouldn't have to wait for transplants and wouldn't have to move so far from home to get the transplant. He knows we have to stay nearby for at least a month after he does get out of Sick Kids and wishes we could be home instead. So his solution is to make it better and fairer for other kids. 💗

I had to explain that is a beautiful idea and I will absolutely talk to CHEO and everyone necessary to make this happen, but it might take a little while to raise the millions of dollars needed to do this. I LOVE his gigantic heart and belief that everything is possible. I tweeted Alex Munter at CHEO and Make A Wish about this yesterday. Alex was lovely and said to let him know when we're back in Ottawa so we can get together and talk about it. We're going to find a way to get Ollie this wish, even if it takes me years to make it happen. 

I'm also working on a plan with some other moms internationally to raise greater awareness of pediatric Anaplastic Large Cell Lymphoma (ALCL), but I'll share more on that as things solidify. 

Now for some really positive news...his blood counts are going up! On Monday he was only 0.03 for his white blood cell count. This is normally expressed multiplied by 1,000, so his count would really be 300. Your average WBC would be between 4,000 and 11,000 per micrometer of blood. Every day since then it has doubled or better despite the fact that we were tools they may fluctuate up and down at first. Tuesday he was 0.05, Wednesday he was 0.08, Thursday he was 0.26, Friday he was 0.54 and today he is 1.09! 

This means he's starting to have neutrophils and infection fighting ability and MOST IMPORTANTLY it means his new immune system from his amazing sister is starting to work!!! Praise God! 

He's not vomited at all since yesterday afternoon now and this is another sign that the WBC are healing his body. 

It's early days and makes Mario nervous to get too excited about it, but the doctors are really pleased and are talking about moving him out of his isolation room into a regular one in the next few days. I am so relieved and filled with love for everyone and everything right now that I feel like I must be emitting beams of light from my body!

He's sleepy today, but has more energy when he is awake. He's happy, but emotional. I can totally relate, but poor Mario looks at us both like we're complete aliens. LOL

He is really missing Abby. He was emotional when I left the hospital this morning, so I stayed longer to hold him and let him cry. He was upset that Daddy was nervous about him moving to a new room too soon and got mad at his father because he felt Daddy didn't want him to come home as soon as possible. He cried that he really misses his sister and needs to see her sooner and doesn't want her to go back to Ottawa without us. Then he felt bad that he was keeping me there and insisted I go to be with her so she wouldn't be sad, too!

She misses him, too, but is focused on getting ready to go back to school. My dearest friend came to Toronto this week and took her back to school shopping, being as careful as possible to keep her safe. Abby had a blast and got to feel normal for a bit. I don't know what I'd do without selfless people like Sonya and so many of you who have stepped up to help me anytime and with anything we've needed.

It's been a really hard decision for us to send her to school and it's still not 100% made, but it looks like we're going to send her back to Ottawa to stay with dear friends for at least a month until we can come home. If we have to stay in Toronto longer, we'll reevaluate and possibly have fault go up to Ottawa to stay with her, or have Mario go home to be with her and family come to Toronto to help me. I am still hopeful that the path continues to be clear and simple for him so that we can just go home sooner and all be together again.

They've generously offered to have her and we know they'll love her and care for her like their own, but man is it ever hard to let her go. She's staying middle school and I'm consoled at least by the idea that the school is only grades 7 and 8 and not with other elementary nor with high school students who can more easily transmit viruses including COVID.

She desperately needs to get back to normal and routine for her own mental health after three months of COVID and 10 months of cancer turning her life upside down. It's really an impossible choice, but her social worker and psychologists feel despite the risk it would be best for her. So we will embark upon yet another stressful experiment in our life, hopeful that her fear and common sense will keep her distant and safe as much as is possible.

We'll have to figure out how we manage the risk to Ollie when we get home as its not just COVID we have to worry about, but all viruses, bacteria and diseases since all of his immunities and antibodies have been wiped out with the transplant and he'll need to gradually get all of his vaccinations again when it's safe to get them.

So we're all emotional, but good right now. Your prayers are working, so please keep them coming as we're not home, yet but can't wait to be!