Building Up

August 24, 2023

Building Up

To pick up where the last post left off - Emma had an AMAZING week in between Blina cycles - she had a belated birthday party with some school friends, including swimming, walking to the corner store, a sleepover and even a projected movie WHILE swimming in the pool! She also had her horse visits AND went zip lining at Boler Mountain. She had a wonderful time and behaved just like a 'normal' 11 year old (lots of eye rolling and wondering why Mom is hovering and worried, haha!).

On to more good news with her bone marrow aspirate done on 4 August coming back with NO LEUKEMIA!! This means that she is currently in remission - we have been waiting to hear those words for 5 long months and it was SO good to hear. Now, when someone unfamiliar with leukemia hears 'remission', you tend to think - 'it's over, you're cured, now back to real life'. Not the case. Leukemia families know that 'remission' just means no cells detected right now. The treatment normally lasts 2.5 years, with various courses of IV, oral and intrathecal chemo over those years and even then, there is always the fear of it coming back. For kids like Emma, considered 'refractory' (ie. no remission after standard course(s) of chemotherapy), it can lead down different avenues of treatment, as evidenced by Emma going for a stem cell/bone marrow transplant. All that to say - the fact that she is in remission does not change what has to happen - it just puts us in a better position going into the transplant.

Emma is now hooked up to the second round of Blina - it was a bit a trying couple of weeks with an extremely debilitating post-lumbar puncture (LP) headache that went on for a full week - Emma was unable to sit up without excruciating headache pain. Once that was under control/resolved, she is back to herself and there is a clear plan for that not to happen again with her next LP. There have been some fun activities on the good days, including going to the Disney Immersive event at 100 Kellogg Lane. Childcan organized a time for cancer families to go, arranging that staff would be masked etc... and at a discounted rate, which was wonderful!

Emma has also had to undergo a series of tests to measure baseline organ function - hearing test, dental check, pulmonary function test, echocardiogram and kidney function measure, as part of the pre-transplant work-up. We will be going to Toronto next Monday to meet the team in person (Chris and I have had a number of virtual meetings already) and for Emma to have CT mapping for the total body irradiation that she will have to undergo as part of the pre-transplant 'conditioning' regimen (will do a separate post about that maybe). We have clear dates for all of this now, which is nice, but also makes it feels like the clock is ticking more quickly to the time that Emma (and I) will enter the void of Toronto/transplant. I have created a Facebook group to provide more real time updates and if I have missed you in that group and you would like to be a part of it, just send me a message and I will do so.

In other news, the amazing ladies of the neighbourhood are yet again using their energy to organize a fundraising event for our family. The time in Toronto is sure to be hard on each of us logistically and emotionally, but also financially, with accommodation and incidentals sure to stack up over the months that we are there. We are very lucky to have such amazing people supporting us and it's hard to know how to thank each and every person who thinks of us; takes the time to message; and uses their time and energy to do this for us. It's really astounding and so heartwarming. Details of this event will be posted on Facebook closer to the time.

Once again, if you are looking for ways to support us or any family affected by childhood cancer, please consider the following:

1) Donate blood! Register to be a bone marrow donor! Find out more at Canadian Blood Services

2) Check out the Neighbourhood event - details to come on Socials/Facebook

3) Donate to ChildCan and/or Ronald McDonald House

4) Emma will be populating an Amazon Wish List for items that she thinks she needs when in the isolation room and I'm sure she will update this regularly. I will post a link to this on the Facebook Group page.