Friday, July 31, 2009
Wednesday, July 29, 2009
Monday, July 27, 2009
Posted by puddle at 7/27/2009 10:04:00 pm
Posted by puddle at 7/27/2009 02:28:00 pm
Sunday, July 26, 2009
Friday, July 24, 2009
Thursday, July 23, 2009
Tuesday, July 21, 2009
Posted by puddle at 7/21/2009 10:35:00 pm
Monday, July 20, 2009
Monday, July 20, 2009 8:30 AM, EDT
I was so anxious about getting the phone call from the doctor, that I forgot to update about all of Ally's fun adventures of last week. I will make sure to do that on Tuesday or Wednesday.
For now, we ARE headed to the medical center today. A late afternoon appointment, which means we will be there until early evening. Thanks Grammy for driving us! You are the best!
~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Monday, July 20, 2009 8:22 PM, EDT
In a surprise attack today Ally's counts were REALLY low. We knew this would happen...eventually. But, when it does happen, it kind of punches you in the gut and reminds you how much this stinks. Her counts were so low in fact that chemo almost didn't happen. We have had to revise the plan. She will get 4 days of chemo this week (Friday off) and depending on her counts this coming Sunday she will get 4 or 5 days of chemo next week. Then she will begin GCSF injections on August 1. In the past she got 7 injections. It looks like we are going to need to give her more. This will cause her to need 2 weeks off between chemo rounds. More time off is always nice, but it is just a reminder that Ally's body isn't strong enough to tolerate the low dose chemo like she has been. If she continues to be happy and active we will do 3 more rounds of chemo and then do more scans.
Ally rocked it out for 5 hours at the hospital today! High 5's all around please!
Posted by puddle at 7/20/2009 10:22:00 pm
Sunday, July 19, 2009
Saturday, July 18, 2009 7:00 PM, EDT
I just got off the phone with Ally's doctor. She and the Jimmy Fund Expert (who thinks Ally is doing GREAT!!!) have decided that since the chemo is working so well we are just going to go ahead with that for another few cycles before more tests. There was talk of a possible biopsy, but that is being put off. I assume (and this is my own thought, never said by the doc) that since the chemo is working there is no need to cut Ally open again, for now.
The tricky part of this is that there is no appointment scheduled for Monday, so we are "on call" for a Monday afternoon appointment. If that doesn't happen we will just start chemo on Tuesday.
Anyway...have a great rest of your weekend.
We are very happy and relieved to get some news!
Posted by puddle at 7/19/2009 12:11:00 am
Saturday, July 18, 2009
Saturday, July 18, 2009 10:28 AM, EDT
Good Weekend Everyone,
We are waiting for a call from Ally's doctor (we actually expected it by yesterday)
to find out what our next step is. I'll let you know when we find out.
~ Ally's Mom
Posted by puddle at 7/18/2009 03:44:00 pm
Thursday, July 16, 2009
Tuesday, July 14, 2009
Monday, July 13, 2009
Monday, July 13, 2009 8:42 PM, EDT
Ally's oncologist just called (she actually has 3, but her primary oncologist was on vacation last week...well deserved, and has just reviewed Ally's scans from last week). She (the doctor) told us that Ally no longer has lesions on her legs! She (the doctor) believes this is from the chemo. She (the doctor) (it would just be easier if I used her name, but I have not asked permission) will be talking to the neuroblastoma expert at the Jimmy Fund this week. They are going to make a decision as to what our next step will be, and we should know by the end of this week what we will be doing next week....it is kind of nice to "have the summer off".
Happy Update. @>----
PS Ally did NOT go in the pool. She did sit on the side with Grammy and dip her feet in. Mommy took her once around the pool (Ally's toes in the water) and she cried the whole time. When asked later in the afternoon if she liked the pool Ally said "YES!" What a strange kiddo.
Posted by puddle at 7/13/2009 09:09:00 pm
Posted by puddle at 7/13/2009 06:51:00 pm
Monday, July 13, 2009 12:48 PM, EDT
Good news for Ally this week. Less cancer and a small mystery as to what is actually going on. We are looking forward to another free week, and will update you as soon as we know what the next step will be.
Ally had a super fun time at Grammie and Grampa S's house yesterday. We (grandparents, Auntie, Uncle, Mommy and Ally) all went for ice cream and Ally got to play with play-doh, blocks and Grammie's shoes. She was very sad to leave. The unexpected nap on the way home made for a quick ride for Ally and a quiet ride for Mommy.
Today, Ally, Mommy and Daddy have already been out shopping; and later, after Ally's nap we are headed to Grammy and Grampa M's house to see about the pool. We tried last week, but Ally was a little apprehensive to actually get in the pool; hopefully today she will get in the $20.00 floaty we bought her!
The rest of the week is full of visiting! Yippee for another free week.
Posted by puddle at 7/13/2009 02:48:00 pm
Friday, July 10, 2009
Great Aunt listener is laughing and crying at the same time and doesn't even care if it means she's insane! :-D
Friday, July 10, 2009 5:51 PM, EDT
We finally got word about Ally's scans around 4:30 today.
Her CT scan was the same (we expected that) and her MIBG scan showed less activity!!!
Back in February when Ally had lesions on her hips she wasn't showing the symptoms they expected. They just assumed at that time that it was neuroblastoma again. Now, they are not 100% sure about that. We are taking next week off of chemo again (good = another week off / bad = the chemo is working, we are worried 3 weeks off might set her back, but have put our trust in the doctors and hope they know what they are doing). On Thursday Ally's case will be discussed at the tumor board, and then next steps will be decided. Most likely another biopsy, which means surgery.
Good news for Daddy's Birthday!!!
Have a great weekend.
Posted by puddle at 7/10/2009 06:51:00 pm
Thursday, July 09, 2009
Wednesday, July 08, 2009
ALLY'S WEEK SO FAR...
(Prayers and good vibes are much appreciated as Ally has the scans this week; hoping for happy results in time for Ally's Daddy's birthday on Friday.)
Week of 7/6: Wild Animal Kingdom, Scans, possibly Story Land, and Daddy's Birthday
Week of 7/13: ??? (probably chemo)
From Ally's Mommy:
Tuesday, July 7, 2009 2:44 PM, EDT
We are back from our trip to Maine. Our original plan was to drive up there in the later afternoon on Monday, spend some time on the beach, eat dinner, relax in the hotel, and go to the zoo on Tuesday. We checked the weather and it said possible showers Tuesday morning, so we left early on Monday and went straight to the zoo; while it was still sunny. (Disclaimer: Ally takes meds that make it so she should not be in the sun, we stayed in the shade as much as possible!) Ally had loads of fun. She mostly loved all the different kinds of monkeys that were there. She really loved the baboon. Some of the other things that happened of note: we saw a goat actually being born, a deer ate from Ally's hand (she HATED that!) and we got to ride in the paddle boats. After the zoo we checked into the hotel, swam in the pool for about 15 minutes (it was too cold for Ally to tolerate) then head to York Beach. We got some dinner and then spent some time on the beach running away from the water. After the beach we headed to Goldenrod to get some taffy and then back to the hotel. Ally is not a fun bed-mate. Her little feet find your belly numerous times throughout the night.
We are very happy we changed our plan, because it was rainy and COLD this morning. We checked out the beach one last time and then headed off to the shopping outlets. Ally loves all the little cars and busses little kids can ride in at the outlets. The best part is that she doesn't even care if we put money in them! After the outlets we met up with Auntie Kelly. We (Ally) were minor celebrities. We met Police Officer Widerstrom (a friend from when I taught school elsewhere), Auntie Kelly's friends who have a cat Ally likes to look at pictures of, and another family from Dover who have fought and won the neuroblastoma war (they were very kind to get Ally a wagon a number of months ago...which she plays with every day). We are now at home awaiting friends to come for dinner.
Tomorrow we are headed to the NH medical center for port access (2:00) and an MIBG injection(3:30) (literally 10 minutes of procedure and we will be there for 2 hours...gotta love hospital scheduling). We do plan on having a tasty early dinner at one of our favorite pizza places up there. We then go back to the medical center for most of the day on Thursday. Depending on the weather and if we hear back about scans we are going to Story Land on Friday, or just relaxing with Ally at home (or maybe at Grammy and Grampa's pool).
Posted by puddle at 7/08/2009 05:05:00 am
Tuesday, July 07, 2009
Saturday, July 04, 2009
Old now, battered; simply
looking for a place to die. Wait out
the last breath.
Unlike your named sake
you eat nothing -- that was
the second self's task, not yours
The fantastic fringe of your ear/nose/antenna
seeks the other. I hope he found you. Now you
come to my back window, like a child seeking its mother
I hold my hand beneath you for measuring
you fall into that hand, home
But it isn't; I have other things need doing
I offer you the window again. You are done with
seeing, holding on. Now, there is only letting go.
What does that last eye see? Nothing, nothing. . . .
I find you a bed of straw, lean near to listen to that
last whisper: Mother, it was wonderful ~~
3 Jules 2009
Posted by puddle at 7/04/2009 03:19:00 am
Happy Fourth of July!
We had a nice visit with Family Moore today. Ally got to stick her arms in the pool, but it's not quite ready for swimming yet.
Tomorrow we have a nice free day to ourselves. We are hoping to be able to see the fireworks from our house, as they start well after Ally goes to bed.
On Sunday the Schulte family will be coming to visit Ally.
Next week we have an overnight planned to York, friends visiting, 2 days at the hospital for scans and a possible trip to Story Land on Friday (aka: Daddy's birthday) This is the first vacation time Daddy has been able to take off in a year and a half where we can actually do something fun. All of his other "vacation" days have been hospital visits. He deserves a nice break. I might even let him sleep in....although he does make a good breakfast sandwich.
Tonight Ally was playing on our bed before she went to sleep and she did a complete somersault. It was awesome!
Have a super weekend. The sun WILL be out!
Posted by puddle at 7/04/2009 02:40:00 am