The Matching Game

It's funny what you can see in someone's eyes...joy, sadness, confidence, pain, mischief, anger, laughter, fear, exhaustion, determination, defeat. When I look at this pic I see mainly the negative stuff with a bunch of determination. Yesterday I looked in the mirror and saw rapid aging and pain. Today more determination. There's fear and determination in all of our eyes in this photo. Likely because as scary as it all is, we three were together without our fourth so that we could have a test to see if any of us could save his life.

We all still look exhausted, though. How could we not?! We are being asked if we are sleeping much. A bit. Last night Abby and Mario went to bed super early and slept better when they knew Ollie was out of his procedures. When Ollie was comfortable the ICU nurses insisted I take a parent room in the adjoining Ronald McDonald Family Lounge to get some real sleep and they promised to come and get me if he needed anything. I slept 6.5 hours as woke wondering why no one had woken me. Turns out Ollie slept that whole time, too meaning he had a better night as they gave him a seizure prevention medication just in case. 

Ronald McDonald Family Lounge Parent Room #3 (of 4). Sofa folds down so you're not so cramped on a single folding bed chair like rooming in with your child.

He did wake up very upset to have a feeding tube and catheter in though, and was hard to console. I think today I have been more patient than ever in my life. So I guess I am learning and getting better at it because I cannot be upset with my baby with everything he is dealing with right now.

He had a test this afternoon on his eyes to see if the optic nerves were working or not. The CTs and MRI did not show any reason why he should not be able to see, yet he is still blind. Thankfully Ollie slept through most of the test. Neurology came by and told us the test proved that he absolutely cannot see anything, but Seville they can see that the signals from his eyes are getting blocked in the optic nerve fairly close to his eyes, they can't see any evidence that they are actually damaged. In short they cannot see a medical reason why he cannot see. So they can't tell if it will be permanent or not. We can deal with permanent blindness if that's the way it turns out, but I have hope that because they don't see damage, it will resolve once we get the lymphoma out of his brain.

On that front, the lumbar puncture (LP) last night showed that the lymphoma cells that were at a level of 900 when they did the first LP are now down to 100! So the inter-thecal chemo that they're injecting into his cerebrospinal fluid is working and will likely be done again tomorrow.

Mario and Abby met me in the CHEO lab this afternoon so that we could all be tested too see if any of us are a bone marrow match for Ollie. I went first and was done in under 3 minutes. 

Abby begged Mario to go next because she was a bit anxious. That was not a great idea as he has the worst veins and they poked him in two different places and got nothing. Abby was stressing that same would happen to her, but I assured her she had inherited my good veins. 

Finally the technician sent Mario to another technician who made out third time lucky for him while at the same time Abby was being hugged by me in the other room while she bravely got hers done on one like mommy. She was apologetic about her fear about it and told me it wasn't really about the poke, but just that it made everything so real. So wise for 11 years old and so unfair that she has to even think about whether or not she can save her little brother's life. 

She also desperately wants to see her brother, but we've had to ask for a special exception to the sibling ban that CHEO has during virus season. We're hoping by the weekend she'll feel well again and be able to come up and visit him for the first time in over two weeks.

Now we wait up to two weeks to find out of any of us are a match.

We have no idea when we'll be going to Sick Kids Hospital in Toronto yet as we don't even know if we have a donor yet.

There was also an EEG today, but we have no results yet.

I had chance meetings with friends Jamie G., Kim A. and  Cata C. today at CHEO so the hugs were all so appreciated! A call from super mom Samar whose son had leukemia four years ago was helpful, too because she can relate on a level like (fortunately) few really can.

Ollie also asked to see his Aunt Jenna and Uncle Vic, so they came by tonight. It was a beautiful thing. Ollie who has been so mired in his pain and suffering perked right up and had totally articulate and normal conversations with them. His day nurse was shocked as he hadn't been lucid all day. Basically he just needed some normal and not to be treated as the patient for a bit. It reminded me that my bright and funny little boy is still in there and he's not completely broken from this.

So all in all, not a bad day. Again my idea of bad has shifted I guess because right now any day where there isn't a new symptom or pain is an okay day.