Accommodation and Changing Plans

Sunday Ollie had another lumbar puncture and a pretty good day. He felt well, ate like a line backer and negotiated to get everything he needed all day including a special visit from our friend Claudia to bring some borrowed Beyblades from Kassimiro who was so kind to lend them. When Ollie called to ask him if he could swap some Beyblades with him for a few days, Kassi immediately said yes and set about finding what Ollie needed. When Ollie fixated on getting them (he's desperately trying to control anything that he can right now), Claudia agreed readily to bring them the same day. 

It regularly brings tears to my eyes to see the lengths that everyone around us will go to simply to bring my son a bit of joy if they can.

Like today...Stephen accepted his Ollie mission to receive more Beyblade parts from Kassi's dad (Hannu who kindly delivered them), to pick up more Beyblades from our house, to pick up Timbits for the lymphoma warrior on the way and to chase down a delivery for us when I couldn't because we had a room full of doctors speaking to us at the same time. 

We also had a visit from Ms. Sherri who read to him using all of the funny different character voices and who took the time to teach Ollie some independence in using his wheelchair, asking him to put his own brakes and seat belt on so he'd know how to do more for himself.

In the afternoon, Christine (my sister from another mother and Gibby to those who know her best) came up from Kingston to visit. We unexpectedly had to go for an ultrasound so they see the veins in his neck in preparation for inserting a broviac in the ne freext two weeks before we leave for Toronto. It's basically a different kind of line or port where they'll do his blood draws and transfusions for the next part. Ollie was unimpressed at having to go at the last minute and frankly, so was I. This is how so many of our days in hospital go with little warning that there's another test or ordeal to get through before day is done. Fortunately we masked up for a reward of visiting the gift shop after and that made things better. 

Ollie also requested another visit from dear friends who were willing to drop everything to accommodate him, but by then, he was tired having gotten up at 5 am, and feeling a bit nauseous. So I said let's do it another day so he could rest.

We also learned today that the fourth round of chemo is officially over now because he did so well! He has a lumbar puncture with intrathecal chemo tomorrow for maintenance and will have one each Tuesday until transplant, but that's it. So if the LP goes well tomorrow and he feels well enough, we could go home tomorrow evening or Wednesday! Great news after 46 days here!

Naturally there were further  developments today that are making planning our day to day before stem cell transplant harder. Sick Kids Hospital called to say they need us in Toronto on March 12 and 13 for radiology consultation and scans at Princess Margaret Hospital. So now we get to drive to Toronto twice in a two week period before staying for 2.5-3 months. Unfortunately since they are killing his immune system in preparation for the stem cell transplant, he cannot fly or take the train due to the risk of infection, so we'll be driving twice and we are staying at a hotel nearby provided by the Pediatric Oncology Group of Ontario (POGO) as it is near the hospital and cleaned carefully for families like ours. 

Also, because there is a potential teachers strike on March 5, we've had to change the date of the stem cell swabbing event in Ollie' s honour to March 31. This makes me sad as I won't be here physically to support it and thank people for coming myself, but I plan to do everything I can to promote it before I leave for Toronto and recorded an interview with 1310 News Talk Radio today to be used closer to the date.

So the moral of the story is that this Planner Dawn is coming to terms with the fact that her life is virtually un-plan-able at the moment and likely will be for at least the next 6-8 months. That won't stop me from making them, they'll just be shorter term and there will be lots of backup plans! 😄