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!)
Tuesday, August 12, 2008
Sunday, August 10, 2008
Saturday, August 09, 2008
updated on 08/09/2008 at 11:50AM.
I'm sorry for not posting Thursday. Tanner did well at the hospital. The doctor who did his scopes said she didn't see anything horribly scary, but didn't really expect that she would. She took biopsies and said that those would tell us what we need to know. I have no idea when those will be back! Next week maybe? Anyway, after a grumpy few minutes waking up from anesthesia, he snarfed down a bag of fritos and was happy! Then he had chicken nuggets fries and sauce when he got home, which was what he had been asking for when he couldn't eat.
So, for now, all is well. We'll wait and see.
All your support means so much to me.
Thanks, Megan
Friday, August 08, 2008
Ally's Stats:
8/3: ANC = 1780
weight = 19.36 lbs
8/4: ANC = 3790
weight = 19.8 lbs
8/5: ANC = 5080
weight = 19.36 lbs
8/6: ANC = 6660
weight = 19.36 lbs
8/7: ANC = 4010
weight = 18.7 lbs
THURSDAY, AUGUST 07, 2008 12:25 PM, EDT
Today at rounds the docs were optimistic about us actually leaving tomorrow! The highest ranked doctor was also very determined to get her back here next Friday for her second transplant! (this works well for our schedule, as I don't start work until the 27th, and it will be something I can hold over Ally's Daddy's head for a while "I spent 6 weeks in a hospital room, while you were free to go anywhere you pleased"!) (Of course I know he would rather be here, but work duty calls.)
They are going to give her blood tomorrow as a little boost, and she should only have to come back to the Jimmy Fund Clinic next Tuesday.
We are still waiting to go to the hearing test, but it is not a deal breaker and if it doesn't happen we still get to go home!
I can't wait to be out of this room...although I fear I will be afraid of wide open spaces, so I will have to avoid the park when we go for walks!
Thursday, August 07, 2008
updated on 08/07/2008 at 12:12AM.
http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=Tanne
updated on 08/06/2008 at 12:07PM.
I feel like throwing up. The things we put our kids through just aren't natural. Tanner is scheduled for an endoscopy and colonoscopy under general anesthesia tomorrow at noon. They just called me with the appointment, and as of now he needs to be on clear liquids and we'll have to do a bowel prep. How do I tell my 4 year old that he doesn't get to eat for the next 24+ hours? So, what they're looking for is evidence of PTLD. They haven't come out and said those words, but that's essentially it. Looking for Cancer. A cancer that has a 50% mortality rate. If you would keep Tanner and our family in your prayers, we would be so grateful. Megan
WEDNESDAY, AUGUST 06, 2008 12:31 PM, EDT
Today Ally is working on a bunch of tests. Yesterday she had an echocardiogram. Today she is currently doing a kidney test where they inject her with radioactive material and then draw blood at 2, 3 and 4 hours out. She has already had an EKG today as well. The only other thing is a hearing test. In the past she has been put out for this test, but they don't want to do that, so they are going to try while she is awake. It takes about an hour and she probably needs to be still. I can make a prediction about how well this is going to go.....
We ARE going home on Friday (as long as something strange doesn't happen). They want to try to get us back here as early as August 15th, but the floor is PACKED! (They already have her room full for Friday afternoon). They told us to be ready for the 15th, but to also be ready to not come that day. So, we will be living day to day, out of suitcases from home for a bit!
Also, last night was her last GCSF (the meds that help her ANC go up). That means they will drop. Her body will need time to figure out it is no longer getting a boost, but eventually they will catch up.
Ally is so cute that while she was getting her radioactive injection and wearing a mask that covers most of her face AND crying like crazy...they all said she was sooooooooo cute!
Tuesday, August 05, 2008
Ally's Stats:
7/31: ANC = 20
weight = 19.14 lbs
8/1: ANC = 280
weight = 19.36 lbs
8/2: ANC = 350
weight = 19.36 lbs
8/3: ANC = 1780
weight = 19.36 lbs
8/4: ANC = 3790
weight = 19.8 lbs
8/5: ANC = 5080
weight = 19.36 lbs
Goal = ANC of 500 for three days in a row
TUESDAY, AUGUST 05, 2008 11:46 AM, EDT
We have reached the goal! Now Ally just needs to show the docs she will eat....
The problem with that is, for much of the day she has things pumped into her, causing her to feel full....
The new goal for going home is this Friday, so I will have to say a super thank you for all the cards (we had to move to another door, because the first one was full) but please do not send any more to the hospital, because we will not be here to get them!
Monday, August 04, 2008
MONDAY, AUGUST 04, 2008 08:48 AM, EDT
Another big ANC and Ally's weight went up (and she wasn't even wearing her heavy PJ's to be weighed!)
This is day 2 of 3 for an ANC over 500! This means (fingers crossed) we should be home by the end of the week! (as long as nothing wonky happens)
We will then be home for about 2 weeks and then back to Children's for transplant #2.
We should be able to go outside to the garden again today, and Daddy will be here tomorrow night!
MONDAY, AUGUST 04, 2008 11:24 AM, EDT
Well, we have learned that things do not work the way we like. I should have kept my mouth (and keyboard) shut about going home by the weekend.
The original plan was to send her home on TPN, to keep her weight up. The docs today were not so keen on that idea. They want her eating (well) before we head home....so it looks like we will be here longer than we wanted!
Ally's Stats:
7/31: ANC = 20
weight = 19.14 lbs
8/1: ANC = 280
weight = 19.36 lbs
8/2: ANC = 350
weight = 19.36 lbs
8/2: ANC = 1780
weight = 19.36 lbs
8/3: ANC = 3790
weight = 19.8 lbs
Goal = ANC of 500 for three days in a row
Sunday, August 03, 2008
Ally's Stats:
7/31: ANC = 20
weight = 19.14 lbs
8/1: ANC = 280
weight = 19.36 lbs
8/2: ANC = 350
weight = 19.36 lbs
8/2: ANC = 1780
weight = 19.36 lbs
Goal = ANC of 500 for three days in a row
SUNDAY, AUGUST 03, 2008 09:56 AM, EDT
13 hours of sleep will multiply your ANC by 5
Ally's Great Aunt listener adds: We all think it had something to do with Ally's Great Aunt Mary sending a card that plays the Hampster Dance such that Mom & Dad were compelled to dance with Ally all over her room. Ha! Laughter and rest. We could all take notes! :-)
Saturday, August 02, 2008
Tanner update from yesterday (site was down for"improvements")
Ally's Stats:
7/31: ANC = 20
weight = 19.14 lbs
8/1: ANC = 280
weight = 19.36 lbs
8/2: ANC = 350
weight = 19.36 lbs
Goal = ANC of 500 for three days in a row
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
SATURDAY, AUGUST 02, 2008 09:54 AM, EDT
Ally had a good night! The plan is to start taking away more antibiotics until she is down to zero, or at least ones we can give her orally at home.
After her platelet transfusion yesterday her platelets were up to 44! AND they decided to give her the GCSF through IV. You may be asking, why not through the IV the whole time, rather than sticking a needle in her everyday? Well.....she is on a protocol, and they have to stick to it perfectly, or it won't count. Her protocol said, give her a shot, so that's what we did. But, after the bleeding incident some doctor worked some magic and now she can get them IV and still be on the protocol!
Ally is having a fun time at the window into the hall...making faces at passersby and pretending to be shy when they look at her! (I'll try to get a picture of that this weekend!)
Happy weekend!
Somewhere in Kansas
As the light achieves a certain slant
crossing the flat flat flat
corn and wheat waving
Hello! Goodbye!
Small towns popping up like mushrooms
after rain
Following the General's great road
someone I love moves away from
me, into the oncoming dark
That is to say
the body moves
The heart stays
in the shallow hollow of my hand
That in the soul which sings
remains
and will
all ways
jjl
31 July 2008
Friday, August 01, 2008
FRIDAY, AUGUST 01, 2008 11:51 AM, EDT
Today I learned a lot can happen while you nap next to your kiddo!
While I was asleep Ally was taken off constant morphine, at least 1 antibiotic was taken away, her thrush meds were taken away, and they are taking her off the TPN for 6 hours a day! She will still get morphine every 4 hours for a while, so she won't have to quit cold turkey!
Yesterday the internets went down or I would have told you the lovely story of Ally bleeding for over an hour, through 2 pressure bandages and 2 pairs of pants from the tiny little pin prick of her GCSF shot. After about an hour they transfused with 2 units of platelets and FINALLY the bleeding stopped, not the best part of my day! They have upped her transfusion cut off, and she will be getting them later today, BEFORE her shot! (Platelets are the last thing to come back.)
Daddy is coming today!
Ally's Stats:
7/31: ANC = 20
weight = 19.14 lbs
8/1: ANC = 280
weight = 19.36 lbs
Goal = ANC of 500 for three days in a row
