It has been about 60 days since we left Mott Children's Hospital and I haven't missed it one bit!
Today we are in the Operating Room getting Xander's other broviac removed and getting his Day +100 bone marrow biopsy. I have looked forward to this day for a very long time.
We haven't posted in a while... that is because we are having a great summer as a family!
In the 60 days since Xan has been out of the hospital... we have:
Gone kayaking (Xander fell in love with this!)
Gone tent camping up north
Swam in lake Michigan
Went kayaking on lake Michigan
Stayed in a friend's cabin on the West side of the State
Lots of bike riding
Eaten lots of local, yummy Michigan veggies and fruits
Visited with lots of friends and family
Celebrated Aaron and Molly's Birthdays
Said goodbye to Uncle Matt... he joined the Navy
Just being in our home together and eating dinner as a family
Night time is great, so wonderful to have our family together
August is a month of fun also... Xan and Molly are staying with Julia and her boys, Aunt Katie, and Grandma and while Aaron and I hunker down in ICCI for the start of school in September.
All of our clients are very understanding and compassionate towards our family situation - we can't thank you enough!
Xander's disease update....
- The last blood work showed that his counts are doing okay. His platelets are in the 150 range!
- The FISH study came back on the peripheral blood and unfortunately showed that his MDS was indeed back.
- The good news is that the MDS was only 6% of his cells (test from early June). *note: when he was diagnosed with MDS in January, MDS was in 100% of his cells*
Xander is currently undergoing Hyperbaric Oxygen Therapy. He is also being treated by an energy healer using a technique called NAET. Both of these therapies have helped Xander feel good on a day-by-day basis. Maybe, just maybe, they will jumpstart his body into 'spontaneous remission'.... that is what we pray for now.
All of your support and concern and care for our family is appreciated so much!
Until next time...
Peace and Love,
Emilie & Aaron
I'm so happy the summer has been full of fun and that this day has come! Xander, Jasmine loves kayaking too, maybe we can get together on the river sometime!ReplyDelete
Lots of love to you all!