ftogrf

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!

Tuesday, September 20, 2011 6:31 PM, EDT


CLEAR CT SCAN!!!!

Yeah!

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!

Monday, September 19, 2011 11:03 AM, EDT

SUCCESS

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.

observing

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:
soccer practice
birthday party
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

Happy Fall!

A day of remembrance.

The water falls where the towers fell

the names forever in stone still fresh memory

of flesh and blood of loved ones, family even now.

Say them. Global names of all kinds a common thread

they are remembered with love, children almost too young

to feel daddy's hug still feel ours. We taste their tears.

Our nation wraps in self as one.

Strong voices cracked, the solitary sob caught on camera

a public private moment intertwined.

It is alright. You are with friends.

By Phil Specht on September 11, 2011

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!!!!

Collective memory

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.

wage peace

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

ddublu

Wednesday, August 31, 2011 3:28 PM, EDT


So here is what Ally’s Mommy & Daddy have been thinking about for the past week or so:

The options for the "maintenance chemo" were as mild as the low dose chemo she did a couple of summers ago and as aggressive as "knock your socks off chemo". Of course we wanted the least side-effects option. We have been nervous that Ally might lose her hair again and have to spend some time in the hospital. The end result is somewhere in the middle. She is going to do another course of Accutane. This is an oral medication (a gel cap that Ally will chew in her mouth). It will make her skin very sensitive, red and peely. It also messes with her moods. As a typical 4 year old who is testing her boundaries we are not looking forward to this part, but we are very happy that it is not "knock your socks off" chemo.

We will draw HAMA again on September 15th.

Ally starts preschool in the next couple of weeks.

Nikongranny

snapperone

Wednesday, August 24, 2011 12:31 PM, EDT

Ally is still HAMA positive. :-(
Waiting for a call back from NYC to find out what we do next.

Thursday, August 18, 2011 8:44 PM, EDT
Ally had a HAMA draw today.
We will get results next Wednesday,
please pray that they are negative,
so we can move forward with treatment in NYC.

mellyweb

pegpics

Friday, August 5, 2011 10:41 AM, EDT

Ally had a blood draw yesterday. Her counts are good enough for us to head out on vacation next week. We have 2 days up North, to explore Story Land, and a couple days in Maine, where we will hit York's Wild Kingdom. Super excited!!! I am sure we will have tons of pictures when we get back.