Tomorrow is the big day @ 1:00pm... Unlike a surgery, it's a pretty uneventful blood transfusion. We could use uneventful as the chemo is finally kicking in and he is getting sick multiple times a day. It takes about 7 - 14 days for his body to accept and start reproducing the donor cells (engraftment). These will be are hardest days so we will need your prayers over the next 2 weeks more than ever.
He is less active but did rally when he saw his sister for the first time in 3 weeks. Peyton just brightens the days. She may be his best medicine!
We have also acquired a new language.. here are our new ABCs: My spelling may not be accurate!
A is for Aldurazyme (The Enzyme Drug)
B is for Bone Marrow & Blood
C is for Chemo (Campath, Cytoxin and Busulfan) & Cyclosprine (Anti-rejection med)
D is for Donor (who we are forever grateful for) and Dressing Changes & DNA (His will change)
E is for Enzyme (what he lacked naturally) & Engraftement
F is for Fluconazole (Antifungal drug) & Flushing (g-tube and Hickman)
G is for Genetics & G-Tube & Graft vs. Host Disease
H is for Hickman line and Hurlers (MPS I) and Hemoglobin
I is for Intrathecal (Spinal injection) & IVs
J is for Juice (specifically apple which Coleson has grown fond of)
K is for Keppra (anti seizure med)
L is for Lysosomal Diseases (storage diseases ~50 rare inherited metabolic disorders)
M is for mucopolysaccarides (MPS) & MRIs
N is for Neuropsych Evaluation (Developmental Specialist)
O is for Orphan Disease (like MPS those that are so rare they do not get a lot of funding) and O+ (His new blood type)
P is for Protonix (Acid reducing med) & Platelets & Paul Orchard (Sr. Dr. of BMTs for MPS)
Q is for quiet (the hallways of the BMT ward since patients are confined to their rooms)
R is for Red Blood Cells & Rare disease
S is for surgeries (I've already lost count and there will be more in the future)
T is for TPN (Feeding through IVs) & Transplant
U is for Ursodiol (Liver protectant drug) & University of Minnesota - Amplatz Childrens Hospital
V is for Veno-occlusive disease of the liver (Possible complication of Chemo)
W is for White Blood Cells & Wes Miller (our BMT Dr.)
X is for X-rays
Y is for "Y?"
Z if for Zofran (Antibiotic)