Saturday, October 5, 2013

Complete Remission (a.k.a. - From bone marrow with love)

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…

Fluorescense In Situ Hybridization (FISH) Analysis Report
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

No evidence for loss or deletion of chromosome 7

200 cells were examined for this probe set

Interphase FISH analysis was performed to determine whether the loss of chromosome 7 known for this patient was present. The signal patterns associated with loss or deletion of chromosome 7 were not observed (0/200 cells 1R1G or 1R2G)

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:

Recently, Grandpa Howie and Grandma Rhondi visited from California. The weather was awesome the whole week. This was very fortunate as Grandpa brought a bug with him from his 50th high school reunion in Parkersburg, WV. As you can see in the picture below, both Grandpa and Grandma were really conscientious of not sharing the bug - they both used hand sanitizer and wore surgical masks while using the facilities within our home. While it was awkward not to hang out inside, the incredible weather really helped as they did not need to wear masks outside. Our efforts were rewarded and no one else came down with the bug.

At school, Xander was Archangel Michael in the Michaelmas play (see picture at top of page). 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,


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