Sunday, December 20, 2009

An inspiration ... as always

Brandon has been so exhausted that in the past 2 days he has hardly opened his eyes. When he does they are red from burst blood vessels. It would be scary except that his beautiful blue pupils still shine through.

In the midst of this exhaustion, nausea and continuous prodding by the medical staff, Brandon spoke up once today "Taly, can you get a wheelchair so that I can get out of bed and out of this room for a bit. I want to see people."

I am so proud of my prince! So inspired by his courage, by his drive! He amazes me!

2 months ago Brandon completed his first marathon; today he circled the floor in a wheelchair. I honestly could not tell you which one made me prouder.

But I am the sick one!!

Last year, between August and October, I lay sick at the hospital next door. Pregnant with Koby, the Drs could not figure out what was wrong with me. Test after test, specialist after specialist, drug after drug ... Heart failure, liver failure, ulcerated digestive tract, carrying 40 lbs of water ... All I knew was that I was in constant pain and I wanted it to stop.

Brandon was at my side every day and every night and he was my rock. Running back and forth between work, Dana and the hospital, he held our lives together. He was the only one who kept me sane - and even that started to slip at the end.

On October 8th I was so sick that a decision was reached on my behalf - our baby would be delivered at 32 weeks, because my body could no longer handle the pregnancy and the fetus would be in danger (and I could die).

So in the operating room on October 10th, Koby was delivered, surrounded by a full team to treat me and a full team to whisk Koby to Sick Kids Hospital.

Thank God everything turned out ok. Koby was strong and was home within a month. I got stronger, and after a few more months of medical care the pain stopped.

They finally figured out that I had a genetic blood disorder called HHT. This disorder can cause problems, or people could live a full life and never even know they have it. In my case, the body changes of pregnancy had triggered it.

I have no symptoms any more, but the disorder is always there and needs to be monitored.


I apologize for this long story. The point really, is the unbelievable irony of everything. I am the one with the blood disorder and now Brandon has Leukemia!!!!!!!!!!! How does this even happen???

Brandon is my rock. He really is the calm strong one between the 2 of us. I count on him for everything...I count on him to be there. I need him!!!!

Fight my love!!!!!
And PLEASE, let me be the "sick" one.

Dec 20 numbers

Hgb - 82
Plts - 24
WBC - 0.5

Numbers still heading in the right direction, though the low Hgb is making him weak (they transfuse at 80).

Tough night last night (nausea and vomiting) but better than the previous!!!

The battle continues!!!