On to the next phase

We are in a nice reprieve of treatment at the moment - an in between time which, coupled with the unseasonably warm weather late last week and over last weekend has been really nice. Emma is up and quietly active each day, making bracelets or doing crafts, as well as a ton of screen time (what's a parent to do?), watching old tv shows (favorite at the moment is Stuck in the Middle on Disney Plus, which stars a young Jenna Ortega - check it out!).

Emma had her 11th birthday last week - it was a pretty good day, she had visits from my parents and Nate, lots of thoughtful cards and gifts AND a visit to Circle R ranch to see some horses. That was a lot for her and she was quite tired and uncomfortable after that. Overall, the day felt celebratory and special, despite the circumstances. Another highlight was that we brought Nilla (Emma's beloved budgie) out the cage for the first time since Emma has been home. We just have to be careful of pet faeces due to the infection risk, so we watch that carefully and wash hands very well once she is back in her cage. I'm sure you can see the pure joy on Emma's face in getting to interact with Nilla again 💗

Most kids are in full remission at the end of the first (Induction) phase. This doesn't change the fact that all kids with B-ALL have to progress through all the 2.5-3 years of treatment, but it is a positive sign when it is the case. Emma's results from last week's end of Induction tests show that, while the cancer has been drastically reduced, there is still some there. The team had previously mentioned that, due to the results of the cytogenetics (genetic profiling of the cancer cells, done at the very first bone marrow biopsy), they would not be totally surprised if there was still cancer there, but this still felt like a blow. In saying that, it doesn't change what happens next - we carry on with the next phase, which is called Consolidation. 

Consolidation consists of a different cocktail of chemotherapy - combination of weekly lumbar punctures to deliver chemotherapy to the spinal fluid/CNS, IV chemo and an oral chemo pill. Emma knows what's coming up during this phase and seems okay with it (what other choice is there?), although she doesn't like the way she feels when she wakes up from sedation after the lumbar punctures. 

Her hair is falling out in earnest and we have made 2 trips to the wig store - she is a very decisive shopper and chose one that we bought and took home on the second visit. It's here waiting when she is ready to start using it. The high-dose prednisone for the last month has caused muscle wasting, so her legs are weak and we are pushing her a little bit to do some more walking/activity to try and regain some function. I think she is starting to process things emotionally and that is incredibly difficult - how do you help your child process this awful flip-switch to what she's ever known about her daily life? We're hoping that she starts to engage with the art therapist at the clinic to help this process. Overall though, she is tolerating things extremely well and she is showing a strength and character that is resilient, determined and oh so tenacious. 

Moving on to more amazing support - it just keeps on coming and we are SO thankful!!

1) Blood donation clinics - this week! First one was on Tuesday and I have heard that the professionally homemade cookies, decorations and company were first rate. More spots available this Thursday (20 April) if you are able to donate. 

2) Yard and bake sale occurred this past weekend - the neighbourhood/community showed up in a HUGE way and raised $3500!! This amount was matched by an anonymous donor, which means that the effort raised $7000 for ChildCan! 

Holy smokes - what a group of determined and thoughtful ladies can do knows no bounds 💖 Thank you for all your support and action. Keep those positive, healing vibes heading our way!