Miya Laughs

Time Keeps On Tickin'

I haven't written in a while, so I thought I'd write a little update.

Not much to report, really.  Miya started walking on her own on Sunday the 11th of September.  I was making brownies in the kitchen at the time. By the time Chris got over the shock and awe and called to me, she had made it all the way across the living room. I caught her walking into the TV stand.

Miya has also started saying "what's that?" and pointing at various things. She can point to her toes when you ask her to.

We got Miya's chemotherapy protocols on the 9th of September. This is basically a schedule of the different drugs she'll be taking and we also went over the side effects of said drugs. A couple of things which struck me are these:

1)  A donor and a recipient may not necessarily have the same blood group. Blood groups need not match in order for tissue types to match.  The thing that amazes me is that by the time the transplant is over and Miya is out of semi-isolation at home, Miya's blood group will have changed to match that of her donor's.  Miya is currently O+ (like Chris and myself) but will turn O- (like her donor). 

2)  The second thing (which is more interesting than it is amazing) is that since chemotherapy changes the skin, Miya will have to wear sunscreen for life, even in winter. The importance of this was stressed to me. Long sleeved shirts, big hats, LOTS of sunscreen. 

We also know some information about our donor. The donor is female and a German. She is 50 years old and weighs 60kg.  I also know that in order to be deemed fit to donate (from her failing medical back in July) she had to go through many, many, many kinds of tests and procedures. Apparently the work-up this woman had was phenomenal. She could have said "No, never mind" or "I can't go through with these tests, remove me from the donor registry" but she didn't. She gave up a lot of time and went through a lot of medical testing just to be able to be cleared for donation. To save Miya. How do I find the words to thank this woman for all she has done?

Want Some Chicken?

We've all been sick with a stomach bug and for the first time ever (even as a little baby) Miya threw up. In the car. All over her car seat. I can't get the smell out and I'm tired of trying every piece of advice someone gives me about how to get the smell out. It ain't comin' out.  Nan H and Grampy Green (my parents in Canada) have generously agreed to buy Miya a new car seat. 

So we're on a countdown now. 20 days until admission for BMT. Three more regular ERTs on the ward.  In the words of the iconic Steve Miller Band, "Time keeps on tickin' tickin' tickin' into the future....Tick, tick, tick, tick....

I'll Take A Large Double Double With Milk & A Snack Pack Of Timbits

Nothing much to report from the Hulse household.  I had my  lump checked out at the Breast Clinic in Bath and was told that the breast tissue felt normal (whew, big sigh of relief). An ultrasound is going to be performed at a later date, just for the sake of completion, but I'm confident everything will be fine.

Miya and I have had HORRIBLE colds. Miya is not a cuddly child, so I knew she was sick when she wanted to cuddle between us in bed last Thursday and Friday night until she fell asleep.

This Friday at our regular ERT, we are meeting with Helen, the BMT nurse, to go over Miya's chemotherapy protocols.  We start Itraconozole AGAIN this Saturday. (Itraconozole is an anti-fungal medicine that is given daily one calendar month prior to transplant to kill any fungal infections that Miya might have.) She'll get 5.5ml per day and it tastes like shit.

Miya took her first unassisted steps on Kingfisher Ward last Friday. She hasn't done it since; she just wobbles around like a drunk when I try to get her to walk unsupported. 

We also have some potential good news on the accommodation front. It is possible that Chris may be able to stay at Wellington Barracks in London for the duration of the BMT.  It would cost us very little (if anything) and it is only a 15 minute walk from the hospital, close to Buckingham Palace.  I'm hoping to find out more this week. 

As for me, I am missing Tim Horton's, Wal Mart, repeats of The Red Green Show, and the old music from Hockey Night In Canada. I also miss old reruns of Degrassi Junior High and Trailer Park Boys. If anyone should have a box of Canadian cultural classics, mixed with a friendly smile and some of those squee-gee things from gas stations (non-existant in this country...imagine wanting to clean your windshield at a gas station!!) please send them my way.  I'd also like a box of Ganong Cherry Chocolates, some Hershey Kisses, and a snack pack of Timbits. And a Large Double Double with milk. Oooo! And how about some Baxter's Chocolate Milk, eh?? Please?? Am I ever going to go home again??