Matches made in heaven

Today was technically the start of round 4 of chemo, but began with a lumbar puncture with intrathecal chemo because his levels hadn't been high enough to plan to start anything else. Ollie had a platelet transfusion last night so those were way up, which is great because yesterday he was bruising so easily that even when he strained to go to the bathroom, he had tiny bruises breaking out across his abdomen. It looks like a purple and blue rash. This is very scary when you don't know that this is normal when platelets are low.

Today we also figured out that some significant pain that he was having yesterday was a result of a little bump he got at home when he went to sit down on the stairs to put his boots on and didn't properly judge where the stair was given his blindness. All day yesterday we were worried he had a lesion of lymphoma somewhere on his spine. Turns out low platelets made a major bruise from a normally minor bump. It's a far cry from the bouncing out the walls boy we were home with 2 months ago. An x-ray confirmed he didn't break anything.

The LP happened so late this morning that Mario ended up going down to his LP and waiting for him to get back to Recovery while I had to go to a video conference with Sick Kids Hospital and our CHEO oncology support team. On our side I had our Oncology Coordinator, Virginia, our POGO Interlink Nurse, Graham, as well as our head Oncologist, Dr. Abbott and our Oncology Fellow, Dr. Pinto. On their side there was a clinic nurse and Dr. Ali from the Stem Cell team. 

There was a ton of information thrown at me with lots of risks discussed and I'll write more on all of this another day, but for now I am focusing on a few key pieces of information. Foremost is the fact that they have identified three perfect matches for Ollie's stem cell transplant! So many prayers answered!  I was completely choked up and all members of my support team were smiling ear to ear as it was the first they'd heard, too.

Sick Kids is proceeding to further testing for the top two so that we have a Plan B immediately ready if Plan A isn't viable for some reason, but it's amazing that there's also a Plan C. 

So they're ready for us to head to Toronto 4 weeks after the start of our next round of chemo (likely tomorrow!) and we'll be there for at least 6-8 weeks and possibly nearby for up to 3 months as we wait to see if the transplant will take or not. The first 8 days will be total body and brain radiation to wipe out his immune system and prepare him for the transplant. On the 9th day he'll receive the stem cell transplant, which is basically as easy as a blood transfusion for him. Then we'll go into serious isolation where only Mario, Abby and myself (and the medical team) will be admitted to see him for three weeks to protect him from infection since he won't have a working immune system.

There's lots of other tough stuff like not being able to take him to any public events or gatherings, shopping malls, etc. for 6 months after the transplant. Basically home and hospital like he is doing now. And they've told us to really limit people at our house, especially young children as he'll have no immunities and after the 6 months post transplant he'll have to have all of his vaccinations again. 

I know it's a long tough road and there's no guarantees and so many statistics and risks to consider, but I know there are good generous people out there who have agreed to donate and give him a new immune system so that he'll live. Everything else is irrelevant right now. So we're letting ourselves just be happy for now and will think about everything else tomorrow.

We're also still going to promote the heck out of the stem cell swabbing event on March 5 because we know there are still so many families out there who don't have even 1 perfect match, especially those from other diverse cultures. So please tell everyone to come out in honour of Ollie because now we need to pay it forward and find other families their miracle, too.

We're grateful for this blessing after 40 difficult days of sacrifice. I feel like we did Lent before Lent even started! Don't worry, we'll still observe Lent though!

So next order of business is to pray for Ollie to regain his vision to make the next part less scary and difficult for him. We still have some tricks up our sleeve to try to help him see and I'll share more when we see results. Stay tuned.

And then we'll pray for a successful transplant. 

And after that, I swear I will pray for anything and everything any of you ever need and help you in any way I can anytime you need it. 

Big love to all of you.