THURSDAY, AUGUST 28, 2008 04:35 PM, EDT
Ally's Mommy relates...
Today was our big whole district meeting for the School District.
Among other things that have to do with teaching and stuff, our SUPERintendent, gave a nice presentation about Ally to every teacher and staff member. He told about his visit to her in Boston (and being the tallest person she had ever met...not hard with our families' gene pool), her excellent spirit and strength, and the wonderful puke incident after our visit to the Jimmy Fund Clinic on Monday. It was nice...not a dry eye in the house!
This situation has been made much easier by the wonderful hearts in the town and their willingness to let me do what I need to for Ally. There is no way I can thank them enough.
The Jimmy Fund Clinic called me today, and we are going directly to Boston Children's on Monday (as JFC is closed on Monday because of the holiday).
Thursday, August 28, 2008
Wednesday, August 27, 2008
WEDNESDAY, AUGUST 27, 2008 08:12 PM, EDT
Ally's Mommy says...
The first day back at work was not as painful as it could have been (of course I have already been there a few times to work in my classroom, and today was just meetings...the kids come on Tuesday...the day after Ally is admitted for Stem Cell Transplant #2!).
Ally had a good day, despite being woken up an hour before she normally gets up, but that is the price she pays when she cries at 2AM to sleep with Mommy and Daddy, and then proceeds to kick us in the face and shove her hands under us for the next 4 hours!
The other day we got a mysterious letter/package in the mail from the Red Sox. It was a fan package that included a couple post cards, a 2008 calendar (with Manny at Mr. September), and some real Fenway Dirt. We have no idea who sent it to us.
Well, work day #2 is up for tomorrow, and when I got home today I could no longer smell puke on the car seat!!!!!!
Tuesday, August 26, 2008
TUESDAY, AUGUST 26, 2008 05:09 PM, EDT
Grammy said Ally had a super day today (Mommy had to go to work and set up/get ready for the first day of school)!
While I was at the Jimmy Fund clinic I put the question out there (AGAIN) about when and if Ally is getting radiation. This has been a very difficult question to answer because there are MANY protocols for children's cancer (as there is very little $$ and research done, because it is so rare...only 10,000 - 12,000 kids a year get cancer). I was assured that I would get a phone call by the end of the week letting me know. The person I spoke with was pretty sure Ally's protocol called for radiation AFTER her 2nd transplant. She was also pretty sure it would happen at Dartmouth! We have NO IDEA when the radiation would happen.
Just another little thing for us to be distracted by and worried about!
PS: The car seat still stinks...after a garden hose and a sponge! Luckily the padding eventually came off (with the help of a screwdriver!) and has been washed and dried!
Monday, August 25, 2008
MONDAY, AUGUST 25, 2008 02:55 PM, EDT
Ally's Mommy writes:
We are back from Boston. Ally did not need to get any blood but they took a LOT from her. Her liver levels were a bit high (this was not a surprise), so they took about 7 more tubes of blood to do more extensive testing. If they did not do this today they would have next Monday, and it takes 5 or so days for the results to come back, which would have delayed everything. I am glad they caught that level today!
We were out of the Jimmy Fund by noon and home around 1. About a minute and a half BEFORE we got home Ally puked all over herself and the car seat. If I had known how cumbersome and awkward it would be to get the cover off I would have never bought the seat we did. I am only hoping I can figure out how to get everything back on by next Monday! You have permission to feel sad for me! (I sure do!)
I officially start work on Wednesday.
Sunday, August 24, 2008
Saturday, August 23, 2008
Friday, August 22, 2008
Thursday, August 21, 2008
updated on 08/21/2008 at 01:56PM.
no cancer!
So, the pathology results from Tanner's biopsy are finally back after almost 2 weeks. No evidence of PTLD! However there was EBV present in the white cells in his stomach. (not really sure what that means), and chronic inflammation in the bowel. They lowered his prograf again to .7 mg twice a day. I'm hoping this will help his tummy. He complains of tummy aches every single day.
Monday Tanner had blood work, then we went to the zoo, then back to the hospital for his first dental check up! It went really well. He has 3 cavities and they're going to fill them in the OR. sounds fun!
Yesterday Tanner had his eyes checked, and they seem good.
This morning, Tanner had a hearing test in preparation to go to preschool!! It was what I expected, high frequency loss. For those who want more details. He hears at 60 decibels at 2000 frequency, and 80 @ 4000. I'm hoping to get him some better earmolds in the hopes that he will actually use his hearing aids!
Anyway, thats what we've been up to this week.
Thanks for all your love, prayers, good thoughts, and concern. Megan, Austin, Noah and of course, Tanner
Wednesday, August 20, 2008
WEDNESDAY, AUGUST 20, 2008 09:30 AM, EDT
Here's the rest of the story!
During our 29 days on the unit in Boston Ally stayed in her room 99% of the time. This was a room that took about 5 paces to cross. She was really good about not being able to leave.
The past week Ally has had the run of the house...going up and down the stairs, going from room to room, being outside for long walks.
Yesterday Ally had to stay in a SUPER SMALL room at the clinic (maybe 2 1/2 paces to cross by about 4 the other way). She wanted OUT! Ally has always behaved very well, especially when doctors, nurses, or anyone who isn't related to her is in the room. Yesterday she showed the staff at our other hospital that she is a toddler and she does throw fits! She finally calmed down when she got her hands on a roll of toilet paper and ripped large pieces off, "blew her nose" on them and then moved on to more toilet paper. It was a rough couple of hours.
So, yes, Ally is the cutest baby in the oncology world (perhaps the whole world), but she is still a toddler!
Tuesday, August 19, 2008
TUESDAY, AUGUST 19, 2008 04:32 PM, EDT
Today we went up to the cancer clinic at the "local" hospital. Ally needs to get a med through her tubes for an hour every 2 weeks. (For only about 2-3 months after her 2nd transplant). They took blood and her levels were good enough so she did not need a transfusion (thus saving us from an extra 4 hours at the clinic). She took a nice nap on the way home and we are just waiting for Daddy to come home so we can go for a walk.
I'll tell you the story of Ally showing some of her "spunk" while we were at the hospital, tomorrow!
Our next appointment of ANY kind is next Monday! No visiting nurse this week! (That means Mommy has to change Ally's dressing. :-()
In case of rain
Leave pans under the drips
Get naked
Remember I never thought I'd be loved like this
Leave the windows open
Inspect for green
and mushrooms
jjl
14 August 2008
I see your face, far
lakes, rivers, skies
full of thunderheads
reflected in your eyes
And long to be your landscape
reflected back to me
Bright faces sun tropes, tropics
Every seed breaking into life
Scope and scene, before
and after
Just a touch, there,
at the small of the back
Old themes, unicorns with pomegranates,
rainbows after the flood
Adam and his mate (who was she?)
And ocean blue with fragments of light
teeming with many living things
Bright rivers rushing over rocks
What has been decided
How much choice, after all?
jjl
14 August 2008
If you are not here, with me
within a touch's length
what then matters?
Dark falls, and I do not hear your voice
What then?
jjl
14 August 2008
The air is bright as I fall
awaiting rescue in your arms
which takes place
as scheduled and as predicted
You carry me away
to all the new places
rough or becalmed
quick seasons and sturdy
Fingers move
in buttons, buckles
play in the cross of
hair across your chest
belly
Curling into the sweet crescent
of your flesh at sleep or waking
finding always, the promise fulfilled
Comfort
then joy
jjl
17 August 2008
Moonrise
And we, two fools, just struck
besotted, drenched, drowned in
each other's love
fine tuned Stradivari
music pitched beyond the human ear
soul hears
seers see
sears the air, which crackles
and sparkles all around
jjl
18 August 2008
standing silent in the dark
listening for your breath
which comes quick and more quick
rapt in your smell
wrapped in your arms
there does not need to be more
but there is
more
jjl
19 August 2008
Sunday, August 17, 2008
FRIDAY, AUGUST 15, 2008 06:02 PM, EDT
Another good day.
The thrush is messing with Ally's taste buds, so eating has been an issue, but we have some meds, so hopefully in a couple days she will be back to eating normal again.
A nurse from Boston gave us a call today (kind of an exit interview). She asked about meds Ally went home on and if they were explained to us. I told her no, because she just came home on an antibiotic, and has had many of those in the past, so I didn't feel it needed to be explained. She was AMAZED Ally only went home on ONE medication! (I didn't even tell her it ran it's course and we stopped giving it to her on Tuesday.) Ally is the coolest!
Ally's Daddy ran a 5K race yesterday; his official time was 20:28! Super fast runner!
Saturday, August 16, 2008
Thursday, August 14, 2008
THURSDAY, AUGUST 14, 2008 01:24 PM, EDT
Good News...Ally's counts are good enough that we do not have to travel ANYWHERE tomorrow! Her ANC is 900 (a good number for her) and her platelets are up in the 60's (much better than when they were 4).
She does have thrush...it seems to be an ongoing problem, but nothing that will delay or really hurt her, it has been described as having your mouth covered in fuzz and making foods taste a little funny.
Speaking of foods here is some fun info for ya:
Ally is not allowed to have many foods while she is on quarantine. She can't have soft or moldy cheeses (think brie and blue cheese), IF we were to take her to McDonald's we would need them to make everything fresh for her and she is not allowed fountain drinks, when we order pizza we have to go pick it up from a place where we can see the kitchen and they are not allowed to cut it. She is not allowed to have ice cream or frozen yogurt from ice cream places. She can have ice cream from our freezer. We can no longer drink from the container if Ally is going to be having any, she is not allowed to eat after us, she can't have deli meats. She can only have fruits that were grown in the USA (except bananas) and we should really avoid fresh fruits anyway. All veggies have to be cooked well, as well as any meat we feed her. All these rules are funny to me, because she only eats yogurt and Pediasure....hopefully towards the end of her quarantine she will be eating some of these things.
Wednesday, August 13, 2008
WEDNESDAY, AUGUST 13, 2008 02:58 PM, EDT
Ally's Mom writes:
In the interest of child safety I traded in my 1999 Subaru Forester that made a VERY bad noise every time I turned left for a 2008 Subaru Outback today! My very first new car! It is shiny and has that wonderful new car smell. Ally is very excited and a little confused.
Ally is having a super day, eating and drinking lots and being very playful!
SUNDAY, AUGUST 10, 2008 07:52 AM, EDT
Being home is awesome!
Ally is walking everywhere. At the hospital she really couldn't walk around, so after 29 days of not really walking it is great to see her choose walking over crawling!
She is also eating like a champ! Ounces and ounces of yogurt and cream yesterday. This morning she is enjoying a muffin. At night she is on IV fluids. It is just saline, because although she is a good eater, she is not a good drinker and her kidneys are very fragile right now. The fluids go for 10 hours and she gets 500 mls (16 ounces).
Now, if only she will sleep in her own crib! The first night home was rough (as it always is in a "new" place). Last night was better, but baby feet in the face and a baby hand in your mouth is not a great way for mommy and daddy to sleep!
MONDAY, AUGUST 11, 2008 02:03 PM, EDT
Tonight we are headed down to the Ronald McDonald house. Tomorrow morning we have an appointment at the Jimmy Fund Clinic. We think they are just going to take her vitals, draw some blood and possibly give her platelets or red blood cells IF she needs them. We understand they want to see her, and make sure things are going well, but we really don't want to make a lot of trips to Boston just for a blood draw! Hopefully we can convince them the visiting nurse can do all of this, and IF she needs blood, THEN we would come down. The day away also messes up Ally's schedule and we just don't want to have to go....but now I am just complaining...when I should be thanking them for taking such good care of our baby!
I'll be sure to let you know how the day goes.
TUESDAY, AUGUST 12, 2008 12:59 PM, EDT
We are back from Boston. It was a pretty good trip. We were only at the Jimmy Fund Clinic for 2 hours. They said she looks great, she didn't need blood and we don't have to go back to Boston until August 25th! They are going to let us go to the nearer hospital for transfusions (if she needs them) and for her new medicine that requires her to be hooked up to her tubies for an hour every 2 weeks. We couldn't have asked for a better day (other than not having to go in the first place!)
