Catch up (phone line's been more than "iffy")

MONDAY, SEPTEMBER 01, 2008 10:56 AM, EDT
Ally's Mom writes, from Boston:

We are all settled into our new room at Boston Children's Hospital.

On this ward there are these cool lights in the ceiling that change color. There are 8 programs. Ours seems to be stuck on one program, and they will not turn off! They are not super bright, but as night comes along they will seem brighter. Hmmmmm. I hope this can be fixed, as cool as they are, I think no lights would be better than lights on all the time.

Today they drew blood from Ally, did an EKG, and we are scheduled to go get some X-Rays later. Chemo will begin tomorrow.

The best part of being here (other than NO traffic on the way in) is the view. We can see a street and a little food court! Ally is going to LOVE being able to see things out the window! Also, good for day, not so much for night, we are behind a pretty busy nurses' station. Lots to look at on both sides of the room.

We were here for 29 days for Transplant 1, lets hope for a couple days less this time!

Mommy is not looking forward to driving home tonight and missing Ally and Daddy until Friday...at which point she will be pushing her students out of the way in order to get to her car and get back to Boston! (Just Kidding...in case some students (or my boss) are reading!)

PS: on another attempt at TV for Ally, we found out she is scared of Elmo!





SUNDAY, AUGUST 31, 2008 07:23 AM, EDT
Ally's Mom relates...

Excellent weekend so far! Ally has been in a super mood and Friday night into Saturday morning Ally slept from 8PM to 5:30AM in her crib!!! She did a similar sleep last night.

Yesterday we took a long walk to the park. There was no one there so we got to take Ally down the slide a couple of times (we did have to make sure she didn't touch anything...other kids are full of germs!) and while she was out of the stroller she walked and walked and walked all over the place!

She ate like a champ yesterday...mostly waffles with syrup, but some other things too (breakfast potatoes and bacon with dinner....yum, love breakfast for dinner).

Today will be mostly laundry and packing. We are waiting until tomorrow morning to leave (we are hoping for a low traffic flow with the holiday).

We expect that tomorrow will run something like this:
~arrive on 6West at 9:30AM
~blood draw
~wait for blood results (usually an hour - two hours)
~hook Ally up to fluids, antibiotics and hopfully chemo.

For this round of chemo she gets 2 drugs for 24 hours for 4 days. She also gets another drug for 15 minutes a day for 3 days. Then she has 3 rest days, then gets her second round of stem cells and MANY days of injections again!

Still no word about radiation...but as I look through her protocol it seems she will get it for about 30 minutes a day for up to 3 weeks. Because she is so little she has to be "put under" for each session. It should start about a month after transplant.

After radiation she will take a med (similar to vitamin A) for 2 weeks, be off for 2 weeks, back on for 2 weeks and so forth for 6 months. And she will be monitored closely (not sure what that looks like yet...how many times will we have to go to the NH hospital???) (Plus we can't forget about the antibiotic she needs to get every 2 weeks through her central line, up at the hospital)....so much to remember. But that stuff is over a month away....

Time to start the laundry...depending on how things go tomorrow I will either blog tomorrow or Tuesday. Enjoy your holiday weekend!