Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, July 23, 2013

T-1 and The ABCs of MPS

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)