Monday, November 30, 2009

Monday, November 30, 2009 8:19 PM, EST

Totally jinxed Ally. The doctor called with blood test results and said Ally needed to come up for a transfusion. She called back a minute later and said they wanted to keep Ally overnight. Her counts were VERY low. We have not seen counts like this since Ally was in Boston for her Stem Cell Transplant.
And the hair. Daddy and I noticed lots of Ally sized hair on her shirt and pillow today. Oh well. She is a cutie when she is bald.

I saw myself for a split second on Extreme Home Makeover, and only because I knew exactly where I was sitting. It was when Ty was panning the hospital with his hand held camera. Daddy and Ally were on the other side of me and cut out of the shot. It was still a good episode, and not about Ally, so it is probably a good thing she wasn't in it; because she would have stolen the show.

The plan is for Ally to get platelets and red blood cells tonight and go home tomorrow morning, as long as her temperature stays good. (Wait...did I just jinx the poor kid again?)

Sunday, November 29, 2009

Sunday, November 29, 2009 6:15 PM, EST

Ally does not like to follow orders. Her doctors thought for sure that we would be back at the hospital by now with a fever...nope, Ally has decided to not have a fever. We like her for that.

However...we did have that little visit on Thanksgiving to the emergency room. Good news, Ally can pee now without it hurting. We were all very excited about that. Miraculously her rash has disappeared as well.

Ally's blood counts are low (red and white). Most likely she will need to go to DHMC for a transfusion tomorrow for red cells and possibly platelets. The injections we give her every day will help her white cells build up. Right now she has less than 0.1 white cells. Which means she pretty much has no white cells, which means she cannot fight off any infection, which means, she stays home. She is used to being able to go places now, and is confused when we sit in the car while Daddy goes into the restaurant to pick up the food.

Ally has been in a great mood (as usual) and very cuddly. She still is lacking energy, but will have a boost of it every now and then. She is still not eating great, and when we were at the hospital on Thanksgiving she had already lost about 2 pounds.

Extreme Home Makeover is on tonight at 8:00 on ABC. There is a small possibility we will be in the background of one of the shots at the Children’s Hospital.


P.S.: We are pleased to tell you that Ally has not lost any of her hair yet! Keep your fingers crossed that it will stay in this time!

Saturday, November 28, 2009




Thursday, November 26, 2009

Thursday, November 26, 2009 7:56 PM, EST

Ally likes to keep things interesting. We ended up spending 3 hours in the ER this afternoon.

Ally woke up in a great mood and with a dry diaper. Usually it is very wet, as we give her liquids all night long through her mic-key button. When she finally did pee she started to cry and said it hurt. Then she just played if off as if it were no big deal. So, we headed to Grammy and Grandpa’s house. Every time she peed she cried. So, we ended up calling her doctor and she was able to get us in to the ER right away (with a doctor waiting for us to show up). Great that we got to go right away, sad because we never got pie today. (You can feel sorry for us.) They determined it is not an infection, but just chemo making her irritated. So, we have cream and baking soda baths ahead of us. To top it all off Ally has developed a rash around her neck, down her back, where her IV was, and where her diaper rubs against her belly. The chemo is making her skin very sensitive.

Do I even need to say it? Ally was great at the hospital! Of course.

Happy Thanksgiving! (Even with the ER trip this one was better than last year, because last year Ally was in quarantine and we didn't get to see anyone.)

Dressing

(Story: I hated dressing until I grew up and started making it on my own. This is distilled from nearly fifty years of fine tuning. . . . e.g., this year I added some olive oil to the sausage after it was cooked because the ground pork I made it from had so little fat. . . .)

One large sour dough round loaf
One pound breakfast sausage
One purple onion
Four stalks celery, including leaves

Slice and "dry" bread in 200º oven, cube
Fry sausage till crumbly (do NOT drain)

Slice and dice onion and celery
Mix altogether. Add sage, marjoram, oregano, rosemary, nutmeg to *your* taste. Salt, and fresh ground pepper also.

Pour either chicken bouillon or giblets cooking water over the rest until bread is slightly moist, but not gummy. (Start with one cup, keep mixing and feeling -- yes, with your hands, lol!)

Freeze half. (Makes *great stuffed pork chops in January or February, or. . . .)

Put the other half in a large buttered casserole w/lid or make an aluminum pocket. Put in oven the last hour you are cooking your turkey. If slow cooking turkey, last two hours.

I have on occasion added a couple of cups of: fresh chestnuts OR hominy OR cut up giblets.

Bon Appétit

Happy Thanksgiving



I have the recipe if you want it, lol!

Wednesday, November 25, 2009

Wednesday, November 25, 2009 1:37 PM, EST

Ally had blood drawn this morning. Her counts were low when she left the hospital, so they wanted to check them today to see if she needed a transfusion. The labs were drawn at 8:30 this morning. I still have not heard from the hospital, so I am assuming we don't need to go today. Chances are, if we are not already in the hospital for a fever, we will be headed up on Friday for a transfusion.

Ally has been lacking energy since we have been home. She has wanted a lot of lap/reading book time. Her naps have been longer than usual, and we are putting her to bed a bit early. The kid is wiped out. All the extra cuddling is great though!

As I was looking through our pictures from the hospital I noticed Ally's "no - no". This was the cast like thing on her arm in the pictures. It is simply meant to keep Ally from pulling out the IV in her arm. She adapted very quickly to not being able to bend her arm. It was really cute when she held something in that hand and then used her good arm to manipulate it. It took her a good hour or two when it came off to start using that arm again.

http://1.bp.blogspot.com/_JqaXA41pvNc/Sws1SNxfDVI/AAAAAAAAF8U/BsModaRHDWk/s1600/image%281%29.png

We have begun Ally’s nightly feeds again. Before chemo she was getting 38mls an hour (30mls=1oz) for about 10 hours. The first night back we gave her 10mls an hour, and last night bumped it up to 15mls. She is tolerating that okay, but is still not interested in eating during the day...there go those awesome 24 pounds she used to weigh. We knew this would cause her to lose weight. Grrrr.

That's all for now. We are hoping to be able to see Grammy and Grandpa (as they are only 15 minutes away, and if we need to head to the hospital it is not too much of a longer drive...so sad to miss the Grammie and Grampa side.) for Thanksgiving tomorrow. It will be Grammie’s birthday the day afterward.

Happy Thanksgiving. We have a lot to be thankful for this year!


IdahoCameraman

Monday, November 23, 2009












Monday, November 23, 2009 6:58 PM, EST

Ally sure does like to keep things interesting.

She took a 20 minute nap on the ride home. She zoned in and out for the rest of the afternoon and finally fell asleep on Daddy's arm around 5:00 this evening.

Meanwhile we were checking her temperature. If it reaches 100.5 we have to call the hospital to let them know we are on our way back to be admitted, so they can start giving her high dose antibiotics. At 3:00 it was 99.9, at 4:00 it was 98.9, at 5:00 it was 100.4. Ahhh!

At 5:45 Ally's oncologist called to let us know labs will need to be drawn on Wednesday. I tell her of the 100.4 temp and she says not to worry. Ally's counts are good enough right now to handle it, and we only need to worry if she starts getting/acting sick. phew!

So, we decide maybe we should just bring her upstairs and put her to bed in her own crib. That was 6:30, she is not too happy about it, but will settle down soon....right?

So our plan is to check her temp every couple of hours tomorrow. If she is out of sorts or if it climbs higher than we want we may be headed back to the hospital sooner than we thought.

I'll keep you posted!

Monday, November 23, 2009 12:20 PM, EST

Ally and Daddy are headed home!!!

Monday, November 23, 2009 8:07 AM, EST

I just talked to Daddy on the phone. The night went pretty well. At one point her temperature was 38 (a fever in Celsius), but is quickly came back down to 37 (a perfect temp). They will be keeping a close eye on that. It could mean she will not be coming home today, but we won't think about that. Daddy also told me that at 6:00 this morning Ally sat up in her big girl bed and declared "Ally thirsty!". Yeah! She still has not eaten anything of significance since Thursday of last week. (Not that the sippy cup of water is significant, but at least her tummy is ready to receive substance again.)
As soon as I know if Ally will be coming home today (and I have a break from my school training) I will let you all know!
Thanks for the nice words, it has been a tough couple of days.

Sunday, November 22, 2009

Sunday, November 22, 2009 9:15 AM, EST

Yesterday afternoon Ally was in a fantastic mood, we visited the playroom and watched one of the other patients (about age 1) make silly faces at Ally. The anti-puke meds worked really well.
Ally did a great job last night. She fell asleep quickly, and barely woke up for diaper changes. The 6 hour chemo she had required her to pee frequently. There was a medication added to the chemo to help her pee, but it wasn't enough, so they had to give her more. This meant frequent diaper changes last night. Ally only puked once last night, and meds were quick after that. She fell asleep right after.
This morning she is kind of zoning out. She just had a huge puke (I have no idea what she is puking up because she has still not eaten.), the nurse just gave her the good anti-puke meds! (This one tends to keep her awake, so we just have to use the "ok" puke meds in the middle of the night.)
Ally is requesting books be read to her.
Today she only has one chemo (around 2:00) today. This one only lasts a 1/2 hour. We are hoping to be able to take her for a walk around the hospital this afternoon. (The 6th floor on the other side of the building has some good toys!)
I am headed home tonight, for work tomorrow, with the hopes of meeting Ally and Daddy at home after work!


Saturday, November 21, 2009



Saturday, November 21, 2009 10:24 AM, EST

Ally declared, "Ally not sleep tonight" after I left the hospital last night. It was after 9:30 before she finally fell asleep. She slept well until 3:00, when the vomiting began. She got some meds for that pretty quickly, but the puking did not stop. She was off and on for a while, until we could give her other meds. The second dose has done the trick. Ally is happily playing on her bed (coloring, Candy Land, books, and kitchen stuff...as I type Daddy is building a fort). She has not eaten since Thursday night. The doctor said she expected as much. We are expecting her to lose weight (Ally, not the doctor). Ally has 2 days of the yucky 6 hour chemo, and after that her appetite may pick up, or it may not. They are able to push the chemo up 2 hours today, so it should be starting around 11:30. That will run until 5:30, when she will get the other chemo. Tomorrow she will just get the second chemo, which they will be able to move up 4 hours, to 1:30, and then on Monday they will be able to run it in the morning, helping Ally get out of the hospital before it turns dark. (Hopefully)
If we can keep the puking under control it looks like it will not be too bad of a day...we were hoping to leave the room at some point, but Ally is hooked up to 2 IV poles, and doesn't seem to want to get off the bed, so it might not happen.
Here is to a good day!

Friday, November 20, 2009


Friday, November 20, 2009 7:45 PM, EST

Well, our family hit MANY emotions today. Our day began about 5:45, with a wake up for Ally, who of course woke up beautifully. She was chatty and fun on the hour+ ride to the hospital. They were able to take us right in. Labs needed to be drawn this morning, to check her counts. This has always been a formality, as Ally's counts are always good......until today. After we had been waiting a while the nurse came in and told me it looked like Ally's counts were going to be too low to do the chemo today. A feeling of utter defeat. We had not been looking forward to this, but had geared ourselves up for it and now the plan was crashing into the ground. We were informed that a call was placed to Sloan Kettering (Ally's NYC doctors). An hour or so later we get the go ahead, her counts were lower than protocol called for, but not much lower, and if we want her ready for surgery in January we needed to do the chemo now. Good news....now we just wait for the pharmacy.

Finally everything is ready around 1:00, but Ally is not quite hydrated enough, so we check her urine one last time in a last ditch effort before we put her down for a nap. Good news! Chemo is hung by 1:30 and Ally is asleep by 1:35. The earlier the chemo goes the better, because it lasts 6 hours, with us having to change her diaper every hour for those 6 hours, plus the 2 after it, so it is already bringing us to 9:30 tonight, with another chemo to hang after that, and then the whole process again tomorrow. So, we happily hang out in the cancer clinic waiting for our bed upstairs, and wait, and wait and wait. At 4:00 they said they just needed to clean it, and they sent for someone to clean it "stat". At 6:00 we finally made it up to the pediatric floor. I know I don't need to say this, but I will: OF COURSE ALLY ROCKED THE WHOLE DAY! She never complained and kept herself entertained for a good 8 hours sitting on a hospital bed (without watching TV).

This chemo is going to hit her HARD. We will be released on Monday IF she is not vomiting profusely. If she is puking just a little we will be able to go home. That is how bad she will be for a while. They are expecting us to be back on Thanksgiving or the day after with a fever.
When Daddy graciously let me leave the hospital for David's House at 7:30 Ally was still feeling really good, but I could tell the long day was getting to her, and she still had 1 chemo and several diaper changes to go.

Well, here is hoping the anti-puke meds work great and Ally wants to play tomorrow.
Thanks for reading...not the best post, but I am tired and cranky.

Fun Tid Bit: Ally got a big girl bed in her pedi room, instead of a crib!
Plus she weighed 24 pounds today!!!!!!!!


harashin

Thursday, November 19, 2009


Put link in box
Highlight link
#2 shows dark when you highlight
click #2 which gets you #3
put link in as shown
click insert box
voilá!

Tuesday, November 17, 2009

. . . . . .. . ... ........ .. . .
. . . . . . . ..||..||..||..||..||..||..||..||..||..||..||..|| . . .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~♥ H A P P Y ♥~~~~~~~~~~~~~~
~~~~~~~~~~~~♥ B I R T H D A Y ♥~~~~~~~~~~~~
~~~~~~~~~~~~~~♥ HOWARD ♥~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
\__________________________________________/

Still in love with Howard Dean. . .

Happy Birthday!! (and thank you!!)


Sunday, November 15, 2009


Great Deep Blue Hurricane 765

Thursday, November 12, 2009

Thursday, November 12, 2009 7:58 PM, EST

We got a call from the medical center here. Ally will start Chemo next Friday. It will last for 4 days, and she will be admitted to the hospital for those 4 days. Most likely she will be re-admitted on Thanksgiving or the day after for a fever. This chemo is going to hit her hard and we were told to expect more admissions and LOTS of transfusions. November and December are going to be long months. Luckily we have very understanding work places!

As of right now we have a date of January 7th for the surgery in NYC. The doctor down there is hoping something opens up before then.


klashkid


Starting next week, Verizon will double the early-termination fee for smartphones. That is, if you get a BlackBerry, Android or similar phone from Verizon, and you decide to switch phones before your two-year contract is up, you'll be socked with a $350 penalty (it used to be $175).
This fee drops slowly over time ($10 a month), but after two years, it's still $110. If the premise of the early-termination fee is to help Verizon recoup its original cost of the phone (see my analysis here http://bit.ly/pOkXz), shouldn't the fee go down to zero at the end of your contract?

This move doesn't help Verizon's reputation for steep pricing and aggressive gouging.

What bothers me more, though, is another bit of greedy nastiness that readers both inside and outside Verizon have noticed.

Here's one example, from a Verizon customer:
"David, I read your posts about how the cell carriers are eating up our airtime with those 15-second 'To page this person, press 5' instructions, but I think Verizon has a bigger scam going on: charging for bogus data downloads.

"Virtually every bill I get has a couple of erroneous data charges at $1.99 each--yet we download no data.

"Here's how it works. They configure the phones to have multiple easily hit keystrokes to launch 'Get it now' or 'Mobile Web'--usually a single key like an arrow key. Often we have no idea what key we hit, but up pops one of these screens. The instant you call the function, they charge you the data fee. We cancel these unintended requests as fast as we can hit the End key, but it doesn't matter; they've told me that ANY data--even one kilobyte--is billed as 1MB. The damage is done.
"Imagine: if my one account has 1 to 3 bogus $1.99 charges per month for data that I don't download, how much are they making from their 87 million other customers? Not a bad scheme. All by simply writing your billing algorithm to bill a full MB when even a few bits have moved."
As it turns out, my correspondent is quite correct. My last couple of Verizon phones did indeed have non-reprogrammable, dedicated keys for those ridiculously overpriced "Get it now"-type services that I would never use in a million years.

At about the same time, I got a note from a reader who says he actually works at Verizon, and he's annoyed enough about the practice to blow the whistle:
"The phone is designed in such a way that you can almost never avoid getting $1.99 charge on the bill. Around the OK button on a typical flip phone are the up, down, left, right arrows. If you open the flip and accidentally press the up arrow key, you see that the phone starts to connect to the web. So you hit END right away. Well, too late. You will be charged $1.99 for that 0.02 kilobytes of data. NOT COOL. I've had phones for years, and I sometimes do that mistake to this day, as I'm sure you have. Legal, yes; ethical, NO.

"Every month, the 87 million customers will accidentally hit that key a few times a month! That's over $300 million per month in data revenue off a simple mistake!

"Our marketing, billing, and technical departments are all aware of this. But they have failed to do anything about it--and why? Because if you get 87 million customers to pay $1.99, why stop this revenue? Customer Service might credit you if you call and complain, but this practice is just not right.

"Now, you can ask to have this feature blocked. But even then, if you one of those buttons by accident, your phone transmits data; you get a message that you cannot use the service because it's blocked--BUT you just used 0.06 kilobytes of data to get that message, so you are now charged $1.99 again!

"They have started training us reps that too many data blocks are being put on accounts now; they're actually making us take classes called Alternatives to Data Blocks. They do not want all the blocks, because 40% of Verizon's revenue now comes from data use. I just know there are millions of people out there that don't even notice this $1.99 on the bill."

Well.

Look, it's very simple.

The more Verizon gouges, the worse it looks. Every single day, I get e-mail from people saying they're switching at the first opportunity, or would if they could. In time, the only people who will stay with Verizon are people who have no coverage with any other carrier.
Every company's dream, right? A base of miserable customers who stick with you only because they have no choice.

I realize that it's a business, that Verizon exists to make money. But the part I don't get is, why doesn't Verizon calculate the business cost of making customers unhappy? Surely some accountant can show that customer anger over these fees and dirty button tricks translate into negative corporate image, and therefore lost business.

Why wouldn't it be a hugely profitable move to start pitching yourself as the GOOD cell company, the one that actually LIKES its customers?

Here are four baby steps: (1) Let us bypass the 15 seconds of pointless voice mail instructions (Verizon is the only carrier who never responded to my campaign; see http://bit.ly/nIgE2).
(2) Make your early-termination fee reflect your actual cost, rather than being a profit center in its own right.
(3) If a data connection is obviously an error--under 10 seconds, say--don't bill for it.
(4) And for heaven's sake, quit imposing your own profit-center buttons on our cellphone designs. If we want to go online for $2 a megabyte, we'll find a way.

Wednesday, November 11, 2009

Tuesday, November 10, 2009


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 09, 2009

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 08, 2009


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

Saturday, November 07, 2009




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 06, 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 04, 2009

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 03, 2009

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.

Sunday, November 01, 2009

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