Next Steps in

 Hi all, 

We received the results of the bone marrow aspirate that they were able to do (as Emma's blood counts were such that they could) on the last day that we were inpatient in hospital (which was on Monday)..... 

It came back as MRD +0.25.... so, not the result that we were looking for, but at least now we know what the next steps will be. They are as follows: 

1) Blinatumomab - this is a continuous IV medication that Emma will get hooked up to in hospital (starting tomorrow, Friday 30 June) and be admitted for observation for the first 5-7 days to ensure no acute side effects. We will then go home with the continuous 24/7 infusion and this will continue for one round of this, which equals 28 days. They will likely then do a second round of 28 days of Blina. Blinatumomab is a type of immunotherapy that attaches to both T-cells and cancer cells, allowing the T cells to identify and destroy cancer cells. The idea is that Blina will put Emma into remission in preparation for: 

2) Stem Cell Transplant (SCT) - after the 2 rounds (=2 months) of Blina, we will relocate to Sick Kids Hospital in Toronto, where Emma will undergo SCT. This will be a hard process, both physically and emotionally (not to mention logistically!) and we are still processing the idea of all of this. 

In some ways we are reeling with this new information. Every time we have a juncture like this so far in this relatively short leukemia journey, it has been not good news. We are tired and of course scared, but we are very hopeful that this path is the right one that will get Emma cancer free and with the best chances of not relapsing down the road. 

Emma has now not had any chemotherapy for almost 2 weeks and again, we see her energy and spark returning. She is still tuckered out from the 3 months of harsh chemo and this very recent admission with neutropenic fever, but she is buoyed by her usual loves: animals and art/creating. She has started putting bird seed outside her window, which has attracted birds, squirrels and chipmunks, whom she has named and enjoys monitoring. It's very sweet. She went to school today for the last hour of the school year and cleaned out her desk, got to see her friends. She worked hard at making a TON of water balloons today and had a little water balloon fight (she was exempt from being a target, obviously!) with Alex and their two besties from over the road. 

From what we have heard about Blina, most kids tolerate it well and feel relatively normal with good energy and appetite. Annoying to be hooked up to an IV 24/7 (and she won't be allowed to swim :(  ), but I'm sure Emma will get used to that. So, we will take that positive and have some fun, low-key  activities on tap when she wants to over the summer months. 

As always, please continue to send positive vibes, supportive messages and prays our way. We need all the strength we can muster. 💕💕💕






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