listener (Thank You!!)

Tuesday, November 10, 2009 8:10 PM, EST

We got a call from Ally's New Hampshire Oncologist this evening. They are still working out a plan, but it looks like chemo will most likely be some time next week. They will have to insert another line (IV or PICC) to do the chemo, but it is only for 4 or 5 days. We pretty much feel that we want it done as soon as possible to get it out of the way, and get Ally recovering so she can have the surgery in NYC.

We are SUPER excited to have tomorrow off to play in the playhouse, bake some cookies, and do a little shopping.

Monday, November 9, 2009 5:27 PM, EST


New York Story:

Friday - Our schedule was: 8:00 MIBG scan and bone marrow biopsy followed by a quick chat with the Doctor to go over results and make sure we were good with the new plan. We figured 11:00 at the latest (this hospital is on time!!!) giving us the rest of the day to explore NYC
What really happened: 8:00 MIBG scan and bone marrow biopsy.
10:00 Ally is returned to us VERY groggy. I ask the nurse if there is anything else for us. She didn't think so, but told us to check in with the desk. Daddy checks in and comes back with the news that they want more urine.
10:05: We are back in the procedure room getting a 4 hour urine bag place on Ally. This is a bag that is attached to her with a long tube attached that empties into another bag and will collect pee for 4 hours. They work really well for boys, and tend to leak on girls.
10:10 We are told we don't need to stick around, just be back around 2:00 to take it off. There goes our day......
We decide to go back to the Ronald McDonald House (RMH) because Ally is already saying she does not like this "funny diaper"
We carry her the 5 windy blocks back to the RMH and arrive there about 10:25
10:40: The phone rings and the doctor is ready to see us. We tell them we left the building and can be there in 15 minutes. We get ready to go.
10:43: They call us back and tell us the doctor can't wait that long, but they want us back on the floor so we are there when he is ready.
11:00: We arrive back at the hospital and let Ally play in the playroom. She has been crying to get the "funny diaper" off the entire time. She begrudgingly plays.
11:15 They call us to see the doctor. No surprise on the MIBG scan, no news on the bone marrow yet, chemo will probably begin this week...or whenever the NH medical center calls us (hopefully this week) and the surgery will be 4-5 weeks later (Christmas in NYC!)
11:30 We go back to RMH and lay Ally down for a nap.
12:30 Ally is awake, but just lies about on the bed, asking to take the funny diaper off. She is very proud of herself when she pees and can see it in the tube...2 year olds are fun!
1:45: Back to the hospital (carrying Ally again) to take off the funny diaper. Ally is HAPPY!

Later that evening...We are in the elevator at the RMH and a teenager and her mom join us. The girl has a few tubes of chemo running on her. Ally says "That girl funny diaper too!" for all to hear. Ahhhhhh.....gotta love her!

Fun Tid Bit: Ally yells "Hot Dog" when she goes down the slide!

Sunday, November 8, 2009 6:04 PM, EST

Today was the big reveal for Ally's playhouse! It is beyond words. Ally had such a good time. Daddy and I could tell she REALLY liked it, because she continued to play even though there were lots of people around. We couldn't invite EVERYONE to the party, so if you didn't come today, let us know if you are going to be in the Concord area and you can stop on by for a private showing...you will have to go down the slide though!

Pictures are up at : http://www.flickr.com/photos/giraffe7219/
There are also pics from New York...only a few because the hospital does not allow cameras and we didn't want to take pics with other kids at the Ronald McDonald House for privacy reasons.

Daddy and I are looking forward to Wednesday when we both have the day off to really get to play with Ally and explore all the super stuff she got. Speaking of super stuff she got...Ally sort of ripped through all her presents before we could take note of who got her what...so THANKS! everyone who got her something for her playhouse.

More stories about New York later in the week!
Did I mention we are happy to be home?

Have a great week...hug a Veteran.

Nora

Regrets


One, watching you
taking yourself to someplace
dark and smokey
running from those who
hurt your heart
watched over by dark men
flickering with bits of gold
here and there on their persons

Born a brass band girl myself
swaddled in love of kind hearts
waiting for blue skies and bright sun
and larks
I could not follow

Perhaps
next time



jjl
7 November 2009

Friday, November 6, 2009 5:55 PM, EST

New York is exhausting! We are very happy to be headed home tomorrow.
Ally has made some friends in the playroom here. It is very cute to see her playing with other children. She fits in well with one little girl who has a similar disposition.
We are VERY impressed with this hospital (and still love DHMC). The receptionists remembered our names and were very helpful whenever we had a question. The hospital nurses and doctors are great at telling us what we need to know in terms we can understand without making us feel stupid. We are not really looking forward to the surgery, but at least we know we will be in very good hands.
Lack of sleep and carrying Ally back and forth to the hospital 3 times today (a total of 30 blocks) has made us VERY tired! I will be sure to tell more about our adventures here, including the silly diaper she had to wear today.

Home Tomorrow!!!

Have top, will travel. Is a wooden base, legs, doable, Cooter?

Wednesday, November 4, 2009 3:57 PM, EST

We are back from the doctor's visit. Our plan has changed....we shouldn't be surprised by this, but it did catch us off guard a bit.
Our new plan: Ally will get a round of chemo where she will need to be admitted to the hospital. She will then have another surgery. If those go well she will have another round of chemo followed by the antibody therapy.
Positives:
1. The chemo can happen at our local medical center and will last about a week.
2. The surgeon (In NYC) is world renown.
3. The antibody therapy requires us to be in NYC for only 1 week, instead of 2, like we previously thought.
Sad note:
Ally is going to lose her hair again. Grrrrrr. We will be on the lookout for some cute winter hats.

Ally is not a fan of the city. While we were out walking this morning she wanted to be carried and was holding on very tightly. I am sure by Saturday she will not want to leave...until we remind her of her playhouse.

Tomorrow Ally has a CT scan and an MIBG injection. On Friday she has an MIBG scan and a bone marrow biopsy.

Thanks for all your well wishes...
Bagels and pizza are tasty in New York!

Tuesday, November 3, 2009 5:56 PM, EST

We have arrived in New York. Our journey began around 9AM this morning, and we got to the Ronald McDonald house around 4:45. It was a long day, but Ally did fantastic on the train, even when it was delayed for about 30 minutes. We are just going to get some food and settle in. Tomorrow we meet with the doctor.

The Hunter's Moon reaches its peak of fullness at 2:14 p.m. EST on November 2

tchrterry

Sunday, November 1, 2009 5:20 PM, EST

Ally had tons of fun trick-or-treating last night. She actually said "Trick-or-Treat" to a couple of people when she was out walking around. The most fun she had was when kids came to our door and she got to hand them the candy. She lost all of her shyness and was yelling "Happy Halloween" and "Trick-or-Treat". It was very cute.

Scott did lots of work on the playhouse today. So did Grampa Moore, Grampa Schulte, Grammie Schulte, Auntie Lynn and Uncle Jason. Scott's family came and Ally got to play with his kids. She had so much fun. Other kids are something special to Ally because she rarely gets to see them.

Tomorrow Ally is headed to the medical center for an H1N1 shot (and hopefully the seasonal flu shot as well), a blood draw, and an echo-cardiogram. The people in NYC want this info before we go there.

We are off to NYC on Tuesday. The word on the Wishing Street is that the Playhouse will be ready when we return on Saturday!

I am hoping we will have internet access at the Ronald McDonald House, and if we do I will be sure to post any info we get, as soon as we get it.

Annilow (AKA Ann Dunn Aldrich)
November 11, 1942 - October 9, 2009


That we are family
is a given
Also given
is that despite
surface arguments
we love each other

We each bring to the potluck dinner
ourselves, our histories, our talents
our kindnesses, our caring
And the circle rounds back again
against itself

I have loved you all
and know I'm loved
Never forget that
As we weep at the empty
place at the table

Today, we remember that
soul who was so alive
and so interested
So caring

Peace, Anni, as you go with God
And traveling mercies. . . .



By puddle on Nov 1, 2009 6:34 PM EST

another Annilow verse

If you hear of my passing

let it lead to action

passerby though you may be

none of us are in our own lives.

We all have causes.

many shared

or a weight we carry

and that is never easier alone.

Resolve to pick up

where others have left off

resolve to travel

to learn

to share, to sing

to listen for song

to carry

to care.

By Phil Specht on Nov 1, 2009 11:57 AM EST

We loved you Anni

For Annilow

Annilow has died. She left without

telling us what was happening, though

there were hints. She talked of

walking pneumonia, left us photos

of crop circles, reminded us

of musical events, grumbled that

some of us hated AARP,

in all brought herself to us

and was herself our friend.

She's left us now in the way

we knew her and we have

the gifts she gave, music,

her role as a teacher, her

opinons, African travelogue and mystery.

It's not the song that's sung,

nor the singer, but the singing

the divine now, the presence,

and though we'll never know

beginnings and ends, we witness

them and bring our own songs

singing what and whom we love.

By Pat in Colorado on Nov 1, 2009 10:48 AM EST

Butterfly Allyson, Hallowe’en 2009

Happy Birthday, baby boy!!

Thursday, October 29, 2009 7:24 PM, EDT

Scott came to work on the playhouse today! While he was here the windows, doors and slide arrived. The windows work! And they have screens! Also, Donna, "The Wishing Lady", stopped by and gave us some info on how they are going to decorate the inside....wow, they have some awesome plans! It looks like they will be doing a lot of the interior work while we are in NYC, so we will make sure they take lots of pictures for us.

SunsetSailor

Wednesday, October 28, 2009 4:48 PM, EDT

Scott surprised us and came to shingle the roof, in the rain, today!

In other news....
It turns out Ally's course of treatment is about to change. A little over a month ago I was talking with Ally's oncologist. We were talking about how well Ally is responding to the chemo and how it has shrunk her tumor. She brought up "the next step". If you have a good memory, read old posts once in a while, or just remember key events you may be thinking, "off to Boston". Well, things have changed. We are actually headed to New York City! This is the antibody treatment we have heard a little bit about. This treatment works best when there is very little disease, and Ally fits into that category now. We know very little about the whole treatment other than it is a 2 week course, that is about 3 hours a day. We will be staying at the Ronald McDonald house in NYC during those 2 weeks. Next week the 3 of us are headed to NYC for some preliminary tests and to have a face to face with the doctors. We expect to get lots more info then, such as when her first 2 week treatment will be. For now here is a link that explains what we are headed for. This is literally ALL we know about this treatment at this point. http://www.mskcc.org/mskcc/html/3215.cfm
We are excited about this next step and are willing to take advice about fun things to see/do in NYC with an immuno suppressed kid and no car!