|Xander as Archangel Michael at the Michaelmas play RSSAA
From where I stand
You are home free
The planets align so rare
There's promise in the air
And I'm guiding you
On Thursday, Xander had a GREAT clinic visit with Dr. Connelly and Chastity. We got lots of great news…
Date Collected: 8/20/2013 (yes, it really takes this long to get these test results back)
Indication: Myelodysplastic Syndrome (MDS)
Disease Status: Complete Response (Remission)
Specimen type: Bone marrow aspirate
200 cells were examined for this probe set
Such great news!!!
In addition to the great genetic report, Dr. Connelly finally is allowing Xander to officially go back to school! 😉 Xander was really weak only 6 weeks ago from muscle wasting from high dose, long term prednisone use. It was so bad at one point, he needed assistance walking up a flight of stairs - we talked about wheelchair seating. Three sessions of PT and lots of "Salsitz boot camp", now he can run, he can jump rope double dutch, he can leap tall buildings in a single bound (not really)… Watch out Grade 4 RSSAA Class of 2022… Xander is back.
Xander is still going to ECP four times a month and is almost, but not quite off of steroids. For those of you in the pharmaceutical know, he is down to biologic levels of prednisone every other day (5mg) with hydrocortisone on off days (15mg). It will take another 2 weeks to be off of the prednisone and 4 more weeks after that for the hydrocortisone. In one more week, Xander will be able to stop taking Valganciclovir as his CMV serum level is less than detectable for three weeks now. At this point he will be off of all antibiotics, antifungals, and antivirals except for his monthly pentamidine treatment to prevent PCP pneumonia.
On the home front:
Michaelmas is a very important festival at school and also seems to be very much Xander's story. You see, Michaelmas is celebrated as the festival of strong will. Obviously, Ms. Tucker (Xander's class teacher) chose him as Archangel Michael for symbolic reasons. Ms. Tucker told the Xander's classmates Xander was to be Archangel Michael because he has tamed his dragon.
It was a wonderful play. It was really special to us in a profound way, however. At RSSAA, all the students in Grade 1 through 4 participate in this play. Molly was a Gnome as she is in Grade 1 and was so sticky sweet. It was really incredibly special to us and it was great to have Grandpa Howie and Grandma Rhondi in town to enjoy as well. We are so glad to have two healthy kids again!!!
In the afternoon after the play, there was kite flying - also a Waldorf tradition. Molly and Xander both ran and ran and ran. In our years at RSSAA we have only ever seen one day with enough wind to actually fly the kites and that day was lightning and thunder along with the wind. Of course, this means that the soccer field is covered from end to end with the kids running back and forth trying to get their kites aloft. It is always a great time and good exercise, too.
Thank you to all of Xander's followers and supporters. Xander's strength and Xander's victory over Myelodysplastic Syndrom represents your strength as the villiage that supported our family. Therefore, our victory is your victory - from the bottom of our hearts… thank you for your support ♥
Peace and Love to all of Xander's followers,