Tuesday, June 28, 2011 4:25 PM, EDT
written by Ally’s Mom
Ally is still HAMA positive. I will get more details about our next step tomorrow.
In swim lesson news: Yesterday was Ally's first lesson. On the very first exercise she went under water and the lifeguard had to pluck her out of the water. I then held her hand for the next 15 minutes, at which point her lips were blue and she was too cold to finish the lesson. Today was a much more successful lesson. I held Ally's hand for most of the lesson today, but she let go long enough to grab the lifeguard's hands and jump from the edge of the pool. She did this about 5 or 6 times! She enjoyed today's lesson much more than yesterday's.
As soon as we have a plan for Ally's HAMA I will let you know.
Tuesday, June 28, 2011
Tuesday, June 28, 2011 4:25 PM, EDT
Posted by puddle at 6/28/2011 12:46:00 am
Friday, June 24, 2011
Friday, June 24, 2011 6:22 PM, EDT
written by Ally’s Mommy
We just got another call from Ally's oncologist...her bone marrows are clean!!!
So, here is a recap of our last couple of weeks:
~Ally had a great year at school. She LOVED going, and is looking forward to going to a new school next year. There is at least one other girl from Ally's preschool going to the new one as well; it will be nice for her to have a friend to start the year off. I am pretty sure her teachers loved having her as well. On her last day Ally came home with a special shell from her teacher, and excellent marks on her report card.
~The day after Ally's last day she came to school with me. It was our field day, family picnic, and clown assembly day! (There was little academics happening that day...shhhhh, don't tell my Superintendent!) Our field day was Alice in Wonderland themed (our PE teacher is AWESOME and put the whole thing together...she even trusted me with the part of the Mad Hatter, in the play). Ally liked it when Mommy was on stage in front of the whole school...it was my acting debut, and I only forgot my lines once, but quickly recovered! Later, Ally was very impressed with the clowns; they were not creepy at all! They were there to promote a circus coming to town in July, we might even try to catch the show!
~Since then we have had some normal days and of course.....CLEAR SCANS!!!
~On Tuesday or Wednesday we will find out if Ally is HAMA positive or negative. If she is negative we will head to NYC in July (probably), if she is positive we will most likely do the Rituximab and Chemo again
~We have recently discovered The Wonder Pets, a cartoon on Nick Jr. Ally is obsessed...it's fun to watch her watch the show.
Posted by puddle at 6/24/2011 10:34:00 pm
Wednesday, June 22, 2011
Tuesday, June 21, 2011
Monday, June 20, 2011
Sunday, June 19, 2011
7pm Friday, 17 June 2011
Had a super fun day with Ally at my school today...too bad it had to end with a 99.9 temp for her...
hopefully it's just a short thing and we won't end up at the hospital.
Ally’s FIRST ordinary haircut!!
Posted by puddle at 6/19/2011 11:02:00 am
Wednesday, June 15, 2011
Do Not Disturb
Hung on door of gravel bar spawning bed
lure of no interest while above a pair of eagles
tumble in aerobatic wizardry
bigger fish to fry
two little loons on mothers back
father shadowing a drifting boat
Fledgling eaglet solitary on treetop
not sure enough to fly, sensing no danger
bunny neither I suspect
when hawk gifts lift off to one on shore
lift off into the great circle
all will fly
Posted by puddle at 6/15/2011 10:23:00 am
Saturday, June 11, 2011
His name is Buffy (he told me, I swear). He seems to be a Great Pyrenees/Golden Retriever mix. He was a pound puppy rescued from a kill shelter by a good friend of mine in Alabama. Yesterday I drove to Knoxville to pick him up (eight hours down/ten back). She and her hubby drove up from Alabama. He's 4 to 8 months old, and I'm giving him a birthday of 1-1-11, which seems lucky. Which he is. And many many thanks to Bobbye who saved his life, and when he couldn't mix with her other puppies made sure he found someone who loved him as much as she did.
UPDATE: HIS NAME IS BEAU. (BEAUREGARD HEISENBERG.)
Posted by puddle at 6/11/2011 12:33:00 am
Friday, June 10, 2011
Friday, June 10, 2011 3:00 PM, EDT
I spoke with Ally's oncologist (here in NH) earlier this week. She has communicated with the NYC doctors. Here is what I found out: The Rituximab can take up to 3 months to see any results. Ally's next HAMA draw will be at the end of June, and this will mark the 3 month deadline. The plan will be: if she is still HAMA positive we will do Rituximab and Cytoxin (chemo) again, if she is negative we will head to NYC for a week of 3f8. The NYC doctor also said there is new evidence that the Rituximab, in and of itself, MAY help in keeping Neuroblastoma away. As long as scans are clear, I don't care what our treatment plan is....
Speaking of scans, Ally has MIBG injection on June 21, and MIBG scan, CT scan, and Bone Marrow Biopsy on the 22nd. Sadly, the 21st is Ally's last day of school, and she is going to miss it. I feel really horrible about that, but Ally is fine with it, so I will be too.
Now, the fun stuff:
[The photo above is of Ally playing mini golf.]
Ally got her new bed! [See photo below.]
I only have a couple of weeks of school left, and then Ally and I have tons of plans for the summer. She has swim lessons the first 2 weeks of summer, and then dance camp. We also have plans to visit with friends and we are hoping for an overnight trip up to StoryLand.
That's all for now. My next update will probably be about scans, unless something interesting comes up. Have a great couple of weeks!
Posted by puddle at 6/10/2011 06:45:00 pm
Wednesday, June 08, 2011
Friday, June 03, 2011
Wednesday, June 01, 2011
Wednesday, June 1, 2011 11:12 AM, EDT
Ally's HAMA came back positive again. Our instructions were to draw blood again in a month. That makes me think her level is still high. I have a call into the doctor to find out if it is at least coming down. Ally being positive is good for our personal calendars (end of school craziness and she has swim lesson the weeks of June 27 and July 4), but we always want to be moving forward with treatment. Plus, scan time is coming around again. I am hoping to schedule them so I don't have to miss the last 2 days or school, or so that Ally doesn't miss swim lessons.....we'll see how that goes.
Other than that Ally has been doing well. She is loving school, and we think we found a good match for her for next year. It is a Montessori preschool, 3 afternoons a week, just a couple minutes from our house (as opposed to the 15 minute drive Grammy and Grampa are currently doing).
We broke out the sprinkler (a wiggly caterpillar) and Ally and our friend Max had a blast the other day. Yesterday her fun time was cut short by a fall on the pavement and scraped knees. The first of the season. Our little Drama Queen was unable to walk for the rest of the night, and required that she be carried....luckily it was close to bedtime.
Upcoming for us: scans, closing out school, swim lessons, dance camp, and a twin sized bed!!!
Posted by puddle at 6/01/2011 07:14:00 pm