Posted by puddle at 10/31/2010 11:00:00 pm
Here is Ally on Halloween Night wearing her butterfly costume.
It is very appropriate as the butterfly is a symbol of resurrection.
Earzy Pearzys (Ear-Z Peer-Zies): Noun: Anything that has soft, bendable ears, such as Knuckles (her current favorite pig)...NOT Daddy ears!
Posted by puddle at 10/31/2010 07:09:00 pm
*** The Ally News today is AWESOME!!! ***
Friday, October 29, 2010 6:38 PM, EDT
Lots of news today!
1. Ally's bone marrow results were NED (no evidence of disease)!!!
2. Ally has been off chemo long enough that we can stop one of her medications! She has been on this antibiotic since first being diagnosed!
3. We only have one week left weaning Ally off her appetite stimulant medicine and that will be one more med off her list!!!
4. Ally's next HAMA draw will be November 18.
5. Ally came to Mommy's school today and participated in the Halloween parade!
(Yes, it is one of the last elementary schools to do a Halloween parade and it is AWESOME!!!)
6. We have a busy weekend ahead with a birthday party and trick-or-treating.
“Napmak” (nap - mak): noun: Ally's word for napkin (one of her few baby words left).
Posted by puddle at 10/29/2010 07:47:00 pm
Wednesday, October 27, 2010 10:55 AM, EDT
Ally did a great job on the overnight at Grammy and Grampa's house. She was very clingy to Mommy and Daddy when we picked her up the next morning. She insists she will not be spending the night at Grammy and Grampa's again. We have no plans to be out overnight right now, but hopefully if the opportunity arises again Ally will change her mind.
Yesterday we had a wonderful playdate. Ally got to play outside and then we did some Halloween crafts! She had tons of fun.
Today I called about HAMA. She is positive (which we thought might happen), so we are on hold for treatment again. Good things: she can now trick - or - treat on the right night, she does not have to endure another week of treatment so soon, and being at home is nice. Bad things: treatment is good.
I am still waiting to hear back about bone marrow results.
Posted by puddle at 10/27/2010 03:23:00 pm
Posted by puddle at 10/26/2010 02:31:00 pm
"Piggy Ups": (command) What Ally says when she would like to be picked up.
Saturday, October 23, 2010 4:24 PM, EDT
For the first time in 1,392 days Ally will not be spending the night with one or more of her parents. She will be spending this evening with her Grammy and Grampa, and her Mommy and Daddy will be at a grown up party! This is a big step for all 3 of us. We are super happy Grammy and Grampa are willing to take on the medical needs of Ally for a night, and we will try not to rush home tomorrow morning, but savor the adult time. Yeah for us!
As we are preparing to pack her up for Grammy and Grampa's Ally just said to Daddy: "Let's just clean up." "What should I do and what will you do?" was Daddy's response. Ally's answer (in a tired voice): "You clean up and I will just watch."
I'll let you know how Ally's night went in my next post.
Posted by puddle at 10/23/2010 06:17:00 pm
Some interesting grass flowers seen on the Muhlenberg Botanic Club walk to the Muhlenberg Meadow at Lancaster County Central Park
Today five of us braved the very light rain to stroll through the Muhlenberg Meadow. Tim Draude talked about the planting he and other club volunteers did about 10 years ago to crate the meadow and the volunteer work that is done to keep out trees, shrubs and invasive weeds. Many flowers were in bloom, you can see the list of plants at the meadow here.
I particularly enjoyed looking closely at grasses in bloom which I think are intricately beautiful. Here are pictures of the flowers of two of our large native grasses at the meadow. Tripsacum dactyloides (Eastern Gamma Grass) is related to corn, Zea mays, and has separate male flowers above the female flowers as corn does. In this case yellow stamens and fuzzy purple pistils.
Posted by puddle at 10/22/2010 05:34:00 pm
Sunday, October 17, 2010 3:01 PM, EDT
So, Ally ended up not going to school on Thursday, because she was so tired. It looks like she is just going to need some recovery time after 3f8. She was adamant about going on Wednesday, and then just as adamant about not going on Thursday. She took a much needed nap instead. She is very much looking forward to going back next week.
We have been relaxing and spending family time together this weekend. It has been nice to be relaxed, not rushed and comfortable.
I have finally uploaded some pictures from NYC. Cameras are not allowed at the hospital (and you don't want to see what actually happens during 3f8 anyway), and we feel pictures at the Ronald fall under the same category, so we only took pictures at the zoo, and a couple of Ally sleeping.
We have a busy week ahead (or at least I do...who knew taking a college course, having a full time job, and being Ally's mom would make someone so busy?...I bet my friend Becky knows!)
That's it for now. Ally has a HAMA draw on Thursday, and we will get results on the 27th.
Posted by puddle at 10/17/2010 04:23:00 pm
Posted by puddle at 10/14/2010 04:24:00 pm
Sometimes I forget why I love you
. . . . . I have always had a great affection for grass. It seems to stand for quietness and strength.
. . . . . . . . . . ~~ Henry A Wallace
This is why:
You gave me grass,
Gardener, painter, my eye never saw them
So soft in the distance, fine in the foreground
Now: spring is not spring without the green girls flouncing
nor summer summer without the fine fringe
the subtle flower
nor fall fall without the seed heads dancing
Winter's fine gold thatch that keeps the ground
and saves and plants seeds for friends and neighbors
nurses the children of strangers
You picked well my love:
how your life's work mirrors your soul
Quiet and strength, indeed
my soul needs that
as does my garden
14 October 2010
Posted by puddle at 10/14/2010 03:59:00 am
Wednesday, October 13, 2010 6:48 PM, EDT
Looking back over the trip to NYC, I would say things went as well as they could. It is never a "good" week when you have to watch your child suffer in intense pain for 5 days, even though it is for the greater good. But, nothing unexpected happened and we made it home safely, so I would say that is a successful week.
Ally is already showing signs of anxiety about the next trip. We are trying to not talk about it, and just let her enjoy her time at home.
She was determined to go to school today. There is construction on the way to school and Grammy and Auntie Stacy had to keep Ally awake on the way there. We found out that Ally spent some time in the rocking chair at school because she was so tired. Hopefully she will be feeling more awake tomorrow.
This morning we got to gather on the State House Lawn for a Make-A-Wish event. It is in connection with the Credit Unions of New Hampshire (I think every credit union, but I am not positive, you can check the Make-A-Wish website to find out the ones that are participating). If you are interested, I think you can just go to your local credit union (even if you are not a member) and buy a calendar for $25. The money goes to Make-A-Wish, and Ally will be on the calendar! Plus you fill out the bottom and get placed into a drawing. (This is my understanding from the event this morning, I may be completely wrong, and if so I hope "Wishing Lady" Donna reads this and corrects anything in the Guestbook, and then I will be sure to repost if need be.
Ally is also a little ball of emotions. She was very upset when I had to leave for work after the Make-A-Wish event, and Grammy had to rush inside with a crying Ally. I think it is just the emotion and craziness of the NYC trip, by next week she should be good.
That's about it. Next week we already test for HAMA again (on the 21st). We will get results on the 27th. One of the Nurse Practitioners down in New York thought it would be very unlikely for Ally to remain HAMA negative, but we will just wait and see. If she is negative Daddy and Ally will head to NYC on Halloween and do round 4 of 3f8 on November 1st. We will need to convince our neighbors to do trick or treating a day early for Ally!
Posted by puddle at 10/13/2010 10:14:00 pm
Tuesday, October 12, 2010 3:07 PM, EDT
We made it home!
Tomorrow morning we get to meet our Governor at a Make-A-Wish event...more on that later.....
Posted by puddle at 10/12/2010 11:20:00 pm
Posted by puddle at 10/12/2010 07:55:00 pm
Monday, October 11, 2010 1:26 PM, EDT
Today went very smoothly. Ally was taken right on time, and the procedure went very smoothly. They even said we did not have to do a 4 hour urine collection today! So, we were back at the Ronald by 11:30.
We are headed out on a morning train tomorrow....I hope Daddy is ready for a big Ally hug, because she informed me she is going to run to him and give him a huge hug!
Posted by puddle at 10/11/2010 04:28:00 pm
Sunday, October 10, 2010 2:04 PM, EDT
Ally had a great time at the zoo yesterday. She was much more willing to play in the children's part of the zoo, than the last time we went. We got some cute pictures.
Ally was not a fan of the 30 minute walk to the zoo and back though. It put her in a cranky mood for the afternoon, but she snapped out of it later in the evening.
Today we headed to FAO Schwarz. Ally has been a trooper all week, so I told her she could pretty much pick whatever she wanted. She chose the smallest little Olivia stuffed animal in the store, stating: "I gots lots stuff at home, little Olivia good for me." She is such a sweetie.
When we got back to the Ronald today they were having some fun and food in the cafeteria area. Ally got to decorate a pumpkin and color. She had a great time.
However, we were up every 2 hours last night because Ally had/has diarrhea. It is one of the side effects of coming off all the narcotics and other meds she got this week. It has also caused her to not want to eat. Today she has only had part of an English muffin and part of a cookie. Hopefully the nap she is taking right now will set her tummy right and she will eat eat eat tonight at dinner.
We are scheduled for Quad Bone Marrow Aspirates tomorrow at 10:30 and a 4 hour urine collection. Please pray the 4 hour urine collection can start when we arrive at the hospital (at 8:30) and not after the bone marrows, and that the bone marrows are on time, because Ally is not allowed to eat or drink until they are done.
Posted by puddle at 10/10/2010 10:26:00 pm
The wash basin on the porch
as close as the men get to the parlor
or dining room
green lawn shade for furniture
soft enough for a quick nap for the young man
tasked with forking straw or shoveling out the wagon to bin
but quick alert to the smell of the roasted chicken
and fresh baked peach pie
meal served on the picnic table
for the dirt, clean and honest though it may be
must be left to the outdoors
or a dip in the cow tank
By Phil Specht on October 8, 2010
Posted by puddle at 10/09/2010 12:02:00 am
Friday, October 8, 2010 3:22 PM, EDT
Today threw a curve ball into the whole situation. Partway through the pain Ally started to retch and throw up. It was pretty scary, because it was all mucousy and she seemed to be struggling to breathe for part of it, but it passed quickly, and she settled down into some good sleep. She even had less hives today. Right now she is resting next to me in bed, and seems to be in a better mood.
Before we left we got instructions for Monday. Right now she is scheduled for Bone Marrows at 10:30, hopefully they won't get pushed back too much.
Our plan is to visit the Central Park Zoo tomorrow!
Posted by puddle at 10/08/2010 03:50:00 pm
Thursday, October 7, 2010 11:50 AM, EDT
Today is going better. Ally's pain lasted for about 20 minutes, she has not required oxygen, but she is covered in hives.
We are still at the hospital, letting Ally sleep it off a bit before we plop her in the stroller and bring her back to the Ronald.
Posted by puddle at 10/07/2010 10:36:00 pm
Wednesday, October 6, 2010 1:24 PM, EDT
Ally had pain for at least an hour (it's hard to keep time in this situation), required all her meds, plus they needed to order more for her. She also broke out in hives. When we left the hospital she was still covered in them. Also, she is a crabby pants right now (can't say that I blame her) and is upset if I move or make too much noise....it is to my own peril that I update at this time, but I needed to vent. If I feel more chipper later I will try to find the silver lining for today......
Posted by puddle at 10/06/2010 05:24:00 pm
Tuesday, October 5, 2010 8:11 PM, EDT
Today went.....well, it went. Ally had pain for about 20 minutes. She usually settles into sleep after that, but our roommate was VERY loud today (totally acceptable for this treatment) and woke Ally up repeatedly, and it just kept upsetting Ally. She needed all of her pain rescue meds and she also needed oxygen for a while. We were able to leave the hospital around 1:30ish and Ally slept until we went to dinner at 6:30. While at dinner she kind of "snapped out of it" and had a little to eat. We talked with Daddy and Grammy on Skype after dinner and Ally was ready for bed around 7:30. She is our brave girl and she is rockin' it here in NYC.
Posted by puddle at 10/05/2010 10:16:00 pm
Monday, October 4, 2010 8:19 PM, EDT
Today went very well. In reference to how last round went (in April) today was pretty mild (and of course the doctors had a reason for that). She had pain for about 30 minutes. She slept for several hours. We were allowed to leave the hospital around 3:30. When we got back to the Ronald Ally slept some more. At 7:00 tonight we got to go to "Wacky Hat Night". Ally was still feeling the effects of all the narcotics from the treatment, so she did not want to participate, but it was still a tasty dinner and Ally enjoyed watching all the people. When we got back up to the room we talked with Daddy on the computer, and just as we hung up Ally snapped out of it....so we called Daddy back and talked again. Ally is now resting comfortably. Hopefully she will sleep through the night.
Ally made some comments today (before treatment began) that broke my heart. She kept saying she didn't want to do the part with the ice packs. The part with the ice packs is the part with the intense pain. We put ice packs where it hurts, and they make it feel 0.3% better. She is so aware of everything, and even though she said she didn't want to do it, she knew she had to and just endured.
We ask too much of her, and she always delivers.
I am so proud of her, and she is so much braver than I will ever be.
Please pray tomorrow and the rest of the week will run as smoothly as today, and that this treatment will work and keep her in remission forever!
Posted by puddle at 10/04/2010 10:41:00 pm
Monday, October 4, 2010 9:31 AM, EDT
We are here in NYC. The train ride went well and a friend of Auntie Kelly was super nice to pick us up at Penn Station and give us a ride to the Ronald [McDonald House]. He also bought us a tasty treat!!!
Last night we settled in, played in the playroom and had some pasta for dinner. There was also a decorate your own cupcake event last night.
Ally is a little nervous about this week, and ended up needing me to snuggle with her last night, from about 1:45 to 4:00AM, when she decided it was time to get up for the day....yippie! (We are all a little tired this morning.)
Nothing has started yet, I will try to update later if we get the internet for the Ronald.
Posted by puddle at 10/04/2010 06:06:00 pm