Thursday, May 06, 2010

All the Ally updates since I lost my online connection on the 26th

Wednesday, May 5, 2010 2:50 PM, EDT

So after calming down for a bit I have realized this does not mean that Ally's tumor is back, it just means a change in treatment.
The plan is to redraw blood in a month. If she is still HAMA positive NYC has a plan to help her body bring that level down. When it gets low enough we will move forward with another round of 3f8. Daddy spoke with the people in NYC and they seem committed to moving forward with this treatment.
I have to remind myself that this happens with lots of kids, and there is a plan in place.
So, this means we are not going to NYC next week, and the shot I gave her this morning was for nothing (except to waste a $500 bottle of injections).
Wednesday, May 5, 2010 10:38 AM, EDT

Ally is HAMA positive. This is bad news. We have to hold treatment in NYC. She will be retested in a month. They are going to call later with more information.

(And it’s Ally’s Mommy’s 32nd birthday today, too. :-( )

There's more info on HAMA here:

We hope HAMA recedes this month and Ally gets back into the 3f8 groove.

Light an Ally candle and a Mommy's Birthday candle here:

Sunday, May 2, 2010 9:34 PM, EDT

We have had such a fun end of the week I did not have time to update.

On Thursday morning we got to visit Auntie. It was VERY windy, but we managed a quick trip to the park and then a very tasty lunch. (It was on the way home that we discovered Ally had been approved for the injections.)

Friday was a very full day for Ally and me. In the morning we were off to visit one of Ally's new best friends. The two girls had lots of fun together. Ally could not stop talking about everything her friend said and all the toys they played with and the fun upstairs game away from the mommies. We got home in time for Ally to have a nap and some lunch, then we were off to another house. This time it was Mommy's friend's house. We had a lovely time tye dying and eating yummy food. There was even a fire for roasting marshmallows. There was another little boy there that Ally enjoyed playing with. It was very fun to watch Ally at this particular place. Ally is not a risk taker, and in new situations she always wants to keep Mommy or Daddy nearby. Within 45 minutes of being there Ally was in and out of the house, up and down the deck stairs and running all over the backyard, without Mommy needing to be there. She would willingly go with other adults around to do whatever she wanted. It was very nice to see her so comfortable in a new situation.

Saturday had us visiting again (this time Daddy got to come). We had a great time visiting some of our friends who live in the land of black flies. (The black flies were not fun, but the people sure were.) There were 2 other little girls there for Ally to play with. By the end of our full day visit the three of them were sneaking off upstairs to play "Madeline". (Ally is not familiar with this game, but the other girls showed her how to play.) Ally had a blast. The girls really enjoyed playing with Ally's medical supplies as well...Ally has things that don't come in the kit you can buy at the toy store. We got home just in time to put Ally to bed.

Today we did some regular old errands. We also bought ourselves a new couch. (It was our 6 year anniversary on the 25th and the 6th year is wood/iron...we figure there is some wood in the couch. To take care of the iron we will eat red meat this week.) On the way home from our errands Ally thought it would be a great idea to go to the park. She is so smart. We played at the park for a while. This particular park has a duck pond, with several male ducks and one mommy duck with about 8 little ducklings. The male ducks DO NOT LIKE IT WHEN YOU GET TOO CLOSE TO THE WATER'S EDGE. Yup, we got chased by 2 angry ducks. It was pretty funny.
Then, tonight we dug out the world biggest dead bush from our front yard and put some new greenery in it's place.

Back to work tomorrow. Ally begins injections on Wednesday and Ally and Mommy head to NYC on Sunday.

Note: Wednesday is also Ally’s Mommy’s birthday.
Thursday, April 29, 2010 2:45 PM, EDT Ally’s Mom wrote:

After several more phone calls, and a VERY helpful lady at MSKCC...


Injections begin on Wednesday.
Wednesday, April 28, 2010 5:17 PM, EDT

What a fun morning we had! The music teacher from Mommy's school came over. So did a bunch of Mommy's friends that have kids around Ally's age. There were 6 kids all together! We sang, danced and laughed. It was really fun. I noticed I need to get Ally around other kids more, because she preferred to dust and clean up, rather than play with the other kids, but she has talked about all of them non-stop since they left. It was great.

On the insurance front: it seems I was confused and the situation got even more confusing today. It is not the insurance that is denying us, it is the "specialty pharmacy" of our insurance that is denying us. Then, after SEVERAL phone calls Daddy talked to someone that said it HAS been approved, since March. Of course this conversation happened at 5:07 this evening, and the pharmacy closes at 5:00, so we couldn't pick a time to get it shipped. They said call back at 9:00AM. Very strange. Very frustrating. I bet I have a fun story to tell tomorrow at 9:15........
Tuesday, April 27, 2010 8:33 PM, EDT

Today Ally had zero potty accidents! We even went out shopping with Grammie for a couple of hours.

Our week if off to a great start. Yesterday Ally and I visited Daddy at work and had lots of fun Mommy and Daughter time. Today "The Wishing Lady" stopped by and Grammie came this afternoon.

The only down side of the week is we have finally hit a snag with the insurance company. So far the insurance has been great in covering pretty much everything we need. Right now they are denying us the shots Ally needs to take just before and during the 3f8 treatment. We find this strange, because she has already done 2 rounds of this treatment, and it is "relatively" inexpensive compared to other medications/procedures Ally has had. The NYC hospital is doing everything they can to make the insurance company change their mind. (Wow, NYC is being helpful??? It blew my mind!) We did not get a call from NYC today with an update, but hopefully we will tomorrow. It adds an extra stress that Ally HAS to begin these shots the morning of May 5, they need to be shipped overnight, and they usually require a 2 week notice. They made an exception for the 2 week notice the first round, so we are hoping they will again, and that everything is cleared up by Thursday or Friday.

Wish us luck with this snag...anyone know someone who works for an insurance company?
From listener: 4/27

Miss Ally is doing pretty well all things considered. She is on a medication that dries out her lips and messes with her moods. Her parents are being wonderful with her through the challenges this brings. And in the midst of it all, Ally is toilet training.

She's such an inspiration!

Meanwhile the hospital has managed to schedule her next M-F week of 3f8 treatments as usual, but this time followed by tests the following Weds & Thurs! Really! They're just supposed to hang out in NYC all weekend and several days more just waiting for tests!??! They were told this would not happen again, but there it is. They have a patient advocate looking into the situation, so send good vibes for a sane outcome! Thanks!!

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