Hi everyone, we would appreciate all the good vibes and prayers tomorrow (5/28) as Blakely has her 9 month post BMT bone marrow  aspiration. She will be put under to take some marrow from her hip to ensure she’s still cancer free and 100% donor cells! In addition to the aspirate she will also be doing an MRI to check on iron overload as this frequently happens with the many blood transfusions she has received over this journey. 

 

Procedure days aka receiving “sleepy medicine” are very triggering for Blakely and makes her very anxious. And as a mom it still doesn’t get easier, despite the many times we’ve gone through it. 

 

I haven’t had any huge updates to share over the past few months, thankfully! But there still have been some little things going on. So definitely don’t think it’s been smooth sailing haha. 

 

Blakely has completed her post BMT chemo as well as 2/3 DLI treatments. DLI is when they take more of the donor cells (my cells) and transfuse them into Blakely in hopes for a little graft vs leukemia effect to ensure the leukemia stays away for good! Blakely received round 2 of DLI about 5 weeks ago and since then has had a lot more GVHD (graft vs host disease). 

 

Immediately after the second DLI, she started complaining about joint pain in her knees, ankles, hands and fingers. Her skin and nail GVHD flared up and just recently mouth GVHD came about which creates sores inside of her mouth. Our team is treating these with localized creams for now as they can get out of control fast. We are praying her GVHD stays controlled with these creams/mouthwash so we don’t have to turn to more serious medications like steroids. So with that being said she won’t be doing the 3rd round which is fine, because we are hoping what we have done is giving us the graft vs leukemia effect without it turning into severe GVHD. 

 

We’ve been able to do a few more things with her immunity numbers slowly improving but we’ve still been pretty cooped up at home and trying to avoid germs. We still have to be careful outdoors with wind, pollution, and dust. As well as being very careful in the sun as that can trigger more skin GVHD! 

 

Good news is she did get cleared to go swimming and we went swimming at a family member’s pool this weekend and she was soooo incredibly happy about that! So much has been taken from her, watching her get to do the things she once loved means so much to us these days!! 

 

Also, Blakely has been nose tubie free for probably about 5 weeks now! She’s been taking an appetite stimulant and doing feeding therapy and she’s eating like a champ! We are so proud of her! 

 

Again, if you can just say a little prayer or send over all the good vibes for tomorrow we would sure appreciate it. Thank you all for your love and support throughout this journey, we couldn’t do it without you!

Pic of Blakely’s “first swim” 🧡