The Blue Thunder seemed to go in alright. The 2nd dose was given on Sunday night. No spinal tap today because of low platelets. They are infusing platelets tonight for an LP tonight. Boring Medical Stuff.
The Monday doctors are working hard and are making decisions with alacrety.
She has to have a bone marrow transplant. No other option. She relapced on Month 57 of 60. Leukemia slept and lay in wait and woke up with a vengeance. Dr. Julie figures it was around about 6 weeks. Fills the bone marrow, and then dumps into the blood stream. Leukemia is so busy making Lymphoblasts that it ignores the rest of the family, platelets and red blood cells. Sort of like some girls when they have a new boy friend.
So since this morning we have accomplished the following:
1. MEB has had a shower.
2. She has had another round of Chemo.
3. I have had a phone hearing.
4. Her blood has gone to Bethesda to be including in some NIH
We are on the list for a trial study with the National Institute of Health.
5. We were told that getting to and through bone marrow transplant is about a year and then......
SHE CANNOT GO TO SCHOOL FOR A YEAR.... something about having no immune system. Oh, dear
So what are we going to work on:
Not killing anyone
Trying to figure out work
Trying to figure out where this will go
Trying to wonder how not to do it again
Trying to find my purple slippers
Trying to add the alter
Trying to get back into ALL fighting mode
Trying to not cry every day for too long
Trying to realize it could be worse
5 comments:
This has to be beyond devastating for her and way beyond frightening for you, every mom's worst nightmare. I wish you did not have to go through this. She is a strong young woman, but this is a big unexpected interrupt in a life that was just starting to move forward. For now I am wishing for some positives, like an early match on a bone marrow donor (family members?) and the strength to pursue a class or two on-line, or some other way to stay connected with her friends and education process. But a day at a time, an hour at a time, a procedure at a time, for now. And wishing you all the fortitude, the strength and courage you will need to keep yourself together. To be strong for her.
Sally this is so beautiful - it made me cry. Life is so unfair & although I've never met your lovely daughter & haven't seen you since 1972ish just want you to know this has touched me. I will be thinking of you & sending prayers.
Sally, your writing, your wit and wisdom, your heart -- it's all brilliant. Thank you for brining us along on your journey with this Blog. So much love to you both -- so many prayers and hugs. Caity
http://www.marrow.org/Join/Join_the_Registry.aspx
Please know that we are rooting for her at Gonzaga and she will be a Zag no matter how long it takes....
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