Engraftment!
What a difference a few days can make. Since our last update, Ellie has really turned the corner. The team is happy to declare that engraftment is achieved, and Ellie’s bone marrow is starting to regenerate. Based on her neutrophil recovery, they have determined effective engraftment date was D+14 which is about as good as you can get. Ellie’s neutrophils jumped from 0.0 to 1.02 and as high as 1.46 before dropping a little, stabilising around 1.0. We should see her counts slowly increase over time as her bone marrow and immune system regenerates.
For comparison, last year it took 5 months post-treatment for Ellie’s neutrophils to reach 1.4 and she achieved that in just 2 weeks this time. That demonstrates the power of healthy donor stems cells, kick-started with some GCSF to promote white cell growth.
The team are also confident that her quick engraftment is due to the perfect 8/8 HLA matched donor cord blood. I had previously written about the benefit of umbilical cord donor blood vice traditional bone marrow donor, and the team at the Randwick Kids Cancer Centre are confident about this being the next best thing from a matched sibling donor.
The other important news is that we have not seen any signs of acute GvHD which is also attributed to the HLA matched cord. We still need to be vigilant for early signs of GvHD as it can occur within the first 100 days of engraftment. However, not seeing it now is a positive sign and indicates that its less likely she will have chronic GvHD in the future. We’ve also been reassured that the lack of GvHD does not necessarily mean the Graft v Leukaemia (GvL) effect is not occurring. We clearly want the new cells to attack any remaining Leukaemia cells. It seems a bit of a black art to find the balance. Ellie is on Cyclosporin for GvHD prophylaxis however, it is also an immunosuppressant. After 60 days, if no GvHD is seen, she will wean off the Cyclosporin to allow her immune system to take over and potentially give way to a degree of GvHD but importantly, promote the GvL effect. It’s critical that Ellie’s new immune system has the capacity to deal with any remaining Leukaemia cells.
For now, Ellie has really turned the corner. She is feeling much better, eating a tonne, communicating and has energy for Lego, reading, and small activities. She is still very fatigued, can’t walk well, and has nerve and limb pain however, this is to be expected for several months post-transplant.
The team are so impressed with her progress in the last week that they are starting to plan for her discharge! This includes reducing anti-nausea medication, reducing the Fentanyl background, and switching some IV medications to NG Tube in preparation for release. They are talking about release potentially by the end of next week which would be one week earlier than planned.
So far, BMT has been an absolute emotional rollercoaster for us. Silver linings and positivity have been hard to find at times and we’ve had some of our darkest moments over the last month or so. While we are certainly not in the clear yet, this week has only brought positive news, and we are optimistic about the future.
If Ellie is discharged late next week, it will be almost exactly one year since she was discharged from hospital following treatment in 2021.
PC

Comments (16)
Fantasic news! Ellie, you are a superstar!!
Praise God!!! Love & continued prayers.
Very positive news indeed!!! Xxx
Brilliant ❤️❤️
Fabulous news! Such a positive milestone and so amazing that dear Ellie may be discharged soon! May her progress continue to astound us all over the next few months! XX
Oh this is incredible news! 🥰
You all needed some good news - this is so promising for the future. xxoo
Tear of joy! This is such beautiful news, thanks for keeping us updated. Xx
Yay!!! So happy for you guys!
Wonderful news on Ellie, this just shows what we’ve seen all along…….she’s a fighter!! Keep up the good fight Ellie (and mom and dad and sister) we’re with you all the way!! Love Cugino John & Tanya 💕
Great news!! ❤️❤️❤️
This is the best news EVER! I have tears of joy for you all! Continued prayers to Ellie and her recovery.
Amazing news xx
God is good, all the time! Prayers continue from Maryland.
Made my day. So glad to hear this positive progress. Go Ellie! Xxx
Hooray Ellie ! Such fabulous good news….it made our day ! We are beyond thrilled for you and for all of your family and friends.