Night visitor
Sunday, May 30, 2010
Thursday, May 27, 2010
Wednesday, May 26, 2010
Allyson has been fighting Neuroblastoma for over 2 years. We are currently in a holding pattern until her HAMA level drops. When it does we will continue with 3f8 treatment in NYC. We will draw blood on June 3rd to check her level. She will have scans in NYC in mid June to see what the disease is doing inside her body.
Tuesday, May 25, 2010 8:53 PM, EDT
Well, the medication continues to rear it ugly head. I complain, but really it is only a few times a day. It makes Ally super sensitive. Things that would not normally bother her send her into 10 minute crying fits. It is difficult to handle, because we know it is not her fault (and later, when calmed down, she seems to be confused about why she was so upset) but we also don't want to give into the behavior and have her think it is okay when she is not on the medication....oh what a fine line we walk, and I am sure EVERY parent out there has had to deal with a similar situation...but this is my blog and I can complain about it!
Not much going on lately. Today Ally fell in the driveway and scraped both her knees pretty badly. She refused to walk the rest of the night. It was sort of cute, when she stopped crying. It was also nice that she gets hurt like a normal kid. (Read that in a way that I like that my kid is normal, not that I like that she got hurt.)
We have an upcoming HAMA draw on June 3rd and scans in NYC on the 14th and 15th.
We follow the stories of a few other families that we have met in NYC. Almost all of them have had MAJOR setbacks over the past few months. In my head I know their situation is not our situation, but my heart is more fearful of these scans than any she has ever had before. It is going to feel like a long wait for those results.
Monday, May 24, 2010
Sunday, May 23, 2010
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Friday, May 21, 2010
Tuesday, May 18, 2010
jjl
Oh the comfort —
the inexpressible comfort of feeling safe with a person —
having neither to weigh thoughts nor measure words,
but pouring them all right out,
just as they are,
chaff and grain together;
certain that a faithful hand will take and sift them,
keep what is worth keeping,
and then with the breath of kindness blow the rest away.
~~Dinah Craik ( 1826 – 1887)
Sunday, May 16, 2010
Sunday, May 16, 2010 6:35 PM, EDT
We have had a super busy weekend! Yesterday we began the day with Daddy running a 5K at Shaker Village. He ran really really fast! Later in the afternoon we went to a party for one of Mommy's friends, who is super smart and just graduated with her CAGS (Certificate of Advanced Graduate Studies...1/2 way between Masters and P.H.D.). There were lots of other kids there and Ally had a blast. Today we went to a family wedding. It took Ally a bit of time to warm up, but she did, and she had a great time. When we left, she was asleep in the car before we were a mile down the road.
Tomorrow we begin 2 weeks of a medicine that makes Ally cranky. Please pray that she doesn't get as cranky this round.
Where we go from here:
Allyson has been fighting Neuroblastoma for over 2 years. We are currently in a holding pattern until her HAMA level drops. When it does we will continue with 3f8 treatment in NYC. We will draw blood on June 3rd to check her level. She will have scans in NYC in mid June to see what the disease is doing inside her body.
Saturday, May 15, 2010
Thursday, May 13, 2010
Wednesday, May 12, 2010
Monday, May 10, 2010 8:56 PM, EDT
So, here is what has been going on the past few days:
Wednesday (5/5): We got the bad news about Ally being HAMA positive, but we are hoping she is HAMA negative when her blood is drawn again on June 3rd.
Thursday (5/6): We attended a Make-A-Wish breakfast with both sets of Grandparents, a Great Aunt and Great Uncle and 2 cousins. It was a wonderful breakfast, that I am hoping raised lots of money. Ally's playhouse was featured in a video (along with another Wish). Daddy, Ally and I were interviewed a couple of weeks ago for it. The editor (Ally's Wish Granter's Daughter) did an awesome job with the video. Ally was a bit overwhelmed with the large number of people there, but she was willing to go with one of her cousins to pass out Wish Cookies.
Friday (5/6): Mommy got a mysterious gift in her school mailbox for Ally...thank you mystery gifter!
The Weekend: We had a great day with Daddy’s family on Saturday, even though Ally was not feeling so well. Because of those continued issues and her wanting a nap around 9:30 on Sunday, we decided to keep Ally home and missed Mommy’s family gathering that day.
Ally was very generous with Mother's Day this year! We have a gift card to a paint your own pottery place and Mommy gets a wonderful massage when she schedules one! We only wish the weekend was a bit warmer.
We have an uneventful week ahead. We are disappointed about the HAMA result, but it sure is nice to just be home for an extended time.
Friday, May 07, 2010
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).
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:
http://www.mskcc.org/mskcc/html/3215.cfm#261342
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:
http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=allys
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:
http://www.mskcc.org/mskcc/html/3215.cfm#261342
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:
http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=allys
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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.
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...
WE ARE APPROVED!!!
Injections begin on Wednesday.
After several more phone calls, and a VERY helpful lady at MSKCC...
WE ARE APPROVED!!!
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........
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?
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!!
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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