Monday, September 26, 2011
Thursday, September 22, 2011
Thursday, September 22, 2011 6:03 PM, EDT
Ally’s MIBG (scan) is CLEAR!!!
We need to wait until next week to hear about bone marrows.
Ally is still HAMA positive. Our NH oncologist is contacting our NY oncologist to see if we will do Accutane again or Rituximab again. Hopefully we will know early next week.
Thanks for all your thoughts and prayers.
We are having pizza to celebrate! (Ally does not actually like pizza, so she will be eating just the crust.)
September is Childhood Cancer Awareness Month. Spread the word that childhood cancer stinks and needs more funding!
Speaking of funding...check out bandofparents: http://www.bandofparents.org/ to see some exciting news about a humanized form of 3f8: http://www.bandofparents.org/treatment_a/155.htm. I believe all of the funding came through fund-raising. Click on "news & events".
This is the future of cancer treatment, and we need all the help we can get!
Posted by puddle at 9/22/2011 09:47:00 pm
Wednesday, September 21, 2011
Tuesday, September 20, 2011 6:31 PM, EDT
CLEAR CT SCAN!!!!
Tomorrow Ally will get her MIBG injection and have a blood draw.
Thursday Ally will have her MIBG scan and bone marrows pulled.
Friday Ally will go to school!
Posted by puddle at 9/21/2011 08:40:00 am
Monday, September 19, 2011
Monday, September 19, 2011 11:03 AM, EDT
Ally did it!!!!
She was able to make it through the CT scan awake!!!
We are not sure when we will get results from this scan.
On Wednesday she will have her MIBG injection and on Thursday she will have that scan (under anesthesia) as well as bone marrow samples.
Posted by puddle at 9/19/2011 01:16:00 pm
Sunday, September 18, 2011
Friday, September 16, 2011
Friday, September 16, 2011 6:56 PM, EDT
Ally has a CT scan on Monday. We are going to try it without anaesthesia this time. The anaesthesiologist will be on stand-by, in case Ally freaks out, but hopefully she will be fine. Our understanding is that Daddy will be able to sit next to her. This is a huge step forward for her. Please send out some extra prayers for a calm Ally on Monday (right around 11:00). She will have the rest of her scans on Thursday; prayers needed for those as well.
Sadly, with her scans spread across the week she will miss 2 days (out of 3) of preschool next week. She has only had 2 days so far, and has enjoyed them. She is already interacting with the other kids and is way more outgoing than last year. I think she is going to LOVE this preschool.
With Ally being sick the last couple of weeks, and with starting Accutane, she has lost 2 pounds. She is now back down in the 27 pound range. We are trying very hard again to get her appetite back up, and to get the pounds on her. We have instituted a sticker chart for eating. It is REALLY hard for her. She does not like to eat, and when she does eat, it takes a long time; usually over an hour for dinner. It is frustrating for her and for us.
The Accutane seems to have peaked. Her peely face is looking better, but her lips are a mess. She only seems moody when she is eating, or getting tired. She should finish up this round on Wednesday and then she will get 2 weeks off.
This weekend we have the following activities:
apple picking with Max
possible trip to Canobie Lake Park
Please send out those prayers for next week:
Monday: CT without anaesthesia
Wednesday: MIBG injection and HAMA results
Thursday: MIBG scan and Bone Marrow samples
Posted by puddle at 9/16/2011 08:09:00 pm
Sunday, September 11, 2011
A day of remembrance.
Posted by puddle at 9/11/2011 09:34:00 pm
Sunday, September 11, 2011 6:52 PM, EDT
Last week Ally started to get sick. There has been some throwing up, and a lot of diarrhea. The poor girl. We are not quite sure where this came from, as none of us that watch her are sick, and she really hasn't been anywhere lately. It looks like we are on the tail end of the sickness, and she is doing much better.
This is just in time for her to start Accutane again. Her first dose was on Tuesday. She takes it twice a day for 14 days, and then she gets 14 days off. Her skin is already peeling around her mouth and, her lips are cracked and bleeding a bit. Sadly, it is also messing with her bum. We have noticed a change in her mood as well. She is less tolerant of us being silly with her, and overall is just moody. Nothing we can't handle, and 97% of the time she is her normal self.
On Saturday Ally had her first soccer practice. Mostly she held onto Daddy's hand and watched the other kids play. We will try again next week. (There are only 6 sessions.)
Also on Saturday Ally helped Grammie and Grampa S. celebrate their 40th anniversary! It was a great day.
Tomorrow Ally has her first dance lesson. These lessons will go all the way to May or June (can't remember which).
Wednesday is Ally's first official day of preschool. She and Grammy M. spent an hour there last Friday to get to know the place, but Wednesday Ally will "go it alone" for 3 hours!
On Thursday Ally will have a HAMA draw, so we will have results on September 21st. We really want to get back to New York for another round of 3f8, please pray for a Negative HAMA.
We also have scans coming up the week of September 17th....Lots of prayers needed for clear scans!!!!
Posted by puddle at 9/11/2011 07:53:00 pm
Saturday, September 10, 2011
We came together
saw the flags went to war.
It had to happen didn't it?
So that was our next great leap as a species?
Form a mob?
Just when we had it together.
So chuck on the blog says wage peace.
Makes some sense you know
that voice coming from outside
should have come from the together inside
or it wasn't going to happen
was it. Leopard in our midst
scream the chimps.
By Phil Specht on September 10, 2011
Posted by puddle at 9/10/2011 07:58:00 pm