Today marks 3 weeks we have been waiting to hear back on the confirmation of Bella's bone marrow donor being a 10 on 10 match and available to donate. We should know more Monday.
Initially our BMT team thought 1-2 wks wait but HLA typing is tricky, things have to grow in the lab, etc. And also if lab work for an urgent case comes up some of Bella's lab work could get bumped. So we need to be patient. No news can be good news too. Our Immunologist Dr.Wright agrees that Bella is obviously an urgent case and wants things moving faster for her, so she is on top of contacting the lab and checking in with the BMT team as well.
Beads of Courage
I started a binder for Bella's beads cards, since she has over a years worth now. Bella probably has over 1000 beads in total given the first chunk from her first 10 months in hospital. Even though I have changed many to "weekly" vs daily beads, she still has over 1000. With this second round in hospital (since Oct. 15th, 2014) she has roughly 300.
Between each yellow bead is 1 week in hospital. Yellow beads represent an overnight stay in hospital.
With some very special beads comes a card. This card describes the bead and I usually write the date, description of the beads and what it represents on the card as well.
From Saskatoon Bella received one bead from a girl who wore both beads on her shoe while she played in a school volleyball tournament. Each player wrote a special note of encouragement to a child in hospital that would receive the bead of courage. It was a beautiful note that brought tears to my eyes for my baby girl. The student who wrote the note for Bella is 15 and has an amazing heart.
I'm excited for Bella to one day understand what all her beads mean.
Blk/White Heart: A bead of courage for the day we had a meeting with the specialists who told me for the first time Bella has SCID, needs chemo, and an urgent BMT.
Ambulance Bead: The Childlife coordinator told me she only had 2 of these large beads and that Bella really deserved it after the many many plane rides and road travels by ambulance.
Snowman: represents New Years! (Jan. 1st, 2015.)
And... the list goes on.
I'm open to ideas on how to display these in our house when we get home.
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