Posted by puddle at 3/31/2008 01:53:00 am
The long hall
stretches as far
behind as forward
Dim, dry, dust
rattles across the tiles
dust of love, dust of bones, dust of deeds
I see you there, so far away
in the bright reflected off sand and stone
I hear your voice, echoing across the desert
And remember, a sunny day
hot and full of jonquils, not so long
ago, when we were near to one another
Your hand at my waist, walking
Your arms wrapped around my arms
wrapped around you, face nuzzling your beard
And ache ache ache for that day
and its distance forward or backwards
when we were, simply, two people in love, together
29 March 2008
Posted by puddle at 3/29/2008 12:28:00 am
FRIDAY, MARCH 28, 2008 09:02 PM, EDT
The rest of the story...
I have some time (as the little peanut went to bed about an hour ago), so I thought I would let you all know what happened yesterday. It was an interesting day. (This is a long post, with some funny parts!)
First, we did end up going down the night before....a whole other story about getting lost and driving around Boston for 35 minutes, we did find the hotel. We had printed off walking directions from the hotel to the hospital (I am not sure if I mentioned before, we stayed at the holiday inn, because the Ronald McDonald house is under construction), but when we got there the lady at the front desk gave us the shuttle schedule. Good, now if it was bad weather we could get a ride.
Next morning (after a night of Ally refusing to sleep in the crib that was finally provided to her around 9:40, going to bed around 11:00 and sleeping sideways between her Daddy and me with her tiny baby hand often waking us up because it was in our mouth) we go down for the 8:00 shuttle, only to find it was a 7:45 shuttle. The next shuttle would get us there on time, but not allow us to stop for breakfast. So, we walked. It turned out to be a very nice walk. And we had time for breakfast....love McDonald's Ice Coffee!
9:00, our first appointment at Dana Farber. We were assuming she would get blood taken and we would be headed over to Boston Children's by 10:00. About 11:40ish we are FINALLY escorted over to Boston Children's (and after them taking 4 tubes of blood from Ally).
We get her set up in a bed with mommy holding her and then they hook her up to the crazy machine in the pictures. They primed the machine with blood for her, because they were taking 240mls of blood, because she is so little, they needed to give her fluids back. They also gave her saline. So, she gets hooked up a around 12:30 and then we wait. She took about an hour nap on mommy and was generally quite good for the 4+ hours she had to stay in that bed. Mommy hopped out of the bed and daddy got in when mommy's legs were asleep. Towards the end of the process the doctor running the show tells us they are moving to a different room and floor over the night, and we will need to go to a new place the following day if we need to come back. (Great....I already mentioned about driving around the night before correct? Directions are not our strong suit.) It was finally decided that they would not give us directions, but we should just go back to the same place and someone would walk us to the new place.
Ally is such a charmer that the doctor that was with us all day was sad she had the next day off, because she would not get to see Ally again! It is impossible NOT to love this girl!
So, around 5:00 we leave the hospital and because it is still a nice day and light outside we walk back to the hotel. Yes, Ally is very underweight for her age (weighing in at about 16 pounds), but carrying 16 pounds of squirmy baby who had been asked to stay still for close to 5 hours as well as the super large amount of food, toys and diapers she requires for about a mile is hard. (Thanks for sticking with that super long sentence...I hope me teaching friends will forgive me!)
We get back to the hotel and meet up with our wicked awesome friend Matt who brought us dinner! And then hang out until we get "the call" (which was supposed to come in around 7:00). The doc gave us her cell phone # and said to call her if she had not called us by 9:00. 9:00, and we call her. At this point she tells me Ally has reached 21 (twice her goal of 10), but that the doc who needs to sign off on this is no where to be found and not answering pages. She says she will call back by 9:30. 9:32 we get another call. Still can't find this other doc, so we need to stay put and they will call us in the morning.
The next morning (after Ally decides the hotel crib is not really that bad). 8:00 we call the cell again, still can't find the doc....we were supposed to be there for 8:30 if she needed to go back. We should not head in, but wait for a call. 9:00, the call really comes and we are allowed to leave the city and drive North into a snowstorm that is putting Concord into the history books as the snowiest winter in recorded history! Yeah for the 2 hour drive.
So that is our tale. Thanks for sticking with it!
Posted by puddle at 3/28/2008 11:03:00 pm
FRIDAY, MARCH 28, 2008 11:04 AM, EDT
Good news from Ally's folks!
We finally got word this morning around 9 that Ally met her [stem cells] goal.
This is how awesome Ally is: Her goal for the entire collection was 10X10 to the 6th power. (They just kept referring to it as 10). This takes most kids at LEAST 2 full days of collection. In JUST ONE DAY of collection she reached 21! More than twice as much as they needed from her. We think she might have some sort of super power!
We left Boston a little after 9 this morning and are home safe with lots of snow on the ground.
The trip to Boston was better than expected.
Next week we have 3 appointments at Dartmouth. On Tuesday we go up for an injection, on Wednesday we go up for some scans where Ally has to go under. On Friday we begin her 3rd round of Chemo.
Posted by puddle at 3/28/2008 04:55:00 pm
TODAY'S ALLY NEWS...
THURSDAY, MARCH 27, 2008 06:40 PM, EDT
We have survived day one of stem cell retrieval. It was a long day, beginning at 9 and ending at 5, with a baby confined to a bed (or more her parents struggling to keep her in a bed). We should know within an hour if we have to go back tomorrow. We are hoping not!
Ally did well today, and was even rewarded with some Wally memorabilia at the Jimmy Fund Clinic at Dana Farber! (No Sox tickets though.....)
I'll update again later if we are staying, and tomorrow if we are headed home!
THURSDAY, MARCH 27, 2008 08:01 PM, EDT
We still don't know yet. We are spending the night regardless of what is happening tomorrow, it is getting too late for us to drive home (we didn't get much sleep last night and today was a loooooooong day!)
Posted by puddle at 3/27/2008 11:27:00 pm
WEDNESDAY, MARCH 26, 2008 04:33 PM, EDT
Ally is off to Boston...
We got the call...
We are off to Boston (possibly tonight, if there is room for us with the Ronald McDonald house). She has a morning appointment at Dana Farber and then we will go over to Boston Children's Hospital where they will begin to retrieve some stem cells. It will probably be a 2 day process, so we will head back Friday night, with all the other Mass drivers! Yeah for traffic!
We are going to bring the laptop in hopes of wifi.
Wish us good traveling!
Posted by puddle at 3/26/2008 05:57:00 pm
WEDNESDAY, MARCH 26, 2008 10:28 AM, EDT
Ally's Mom sends word:
I got a call from the doctor this morning, she said it is possible for us to be going to Boston tomorrow. The nurse is going to come today and draw some blood around 2:00, so hopefully by 4:00 we should know if we will be here or in Boston tomorrow. If we do not go tomorrow, we will be going on Monday.
NOTE: Going to Boston is for the purpose of having Ally's stem cells harvested, so that they may be given back to her later when she needs them most. As I recall, she is to come back and undergo Chemo 3. Given the two storm systems we're supposed to have, I imagine that will begin Monday.
Thanks sooo much for the prayers and vibes and candles!! ~ Ally's Great Aunt listener
Posted by puddle at 3/26/2008 12:06:00 pm
TUESDAY, MARCH 25, 2008 07:31 PM, EDT
Back from the hospital. What was supposed to be a 4 hour visit turned into a 6 1/2 hour visit, thanks to the blood bank taking an extra long time making sure the blood was the best Ally could get.
The doctors were impressed she is gaining weight (they were hoping she would just maintain!).
Her counts are high enough that we are doubling her injections. (2 times the meds, only 1 shot....except for tonight, because we have 2 shots left, so we gave her both.) I am not exactly sure when this means we will go to Boston. My guess is early next week, but I am going to call tomorrow and talk to the doc...she was very busy today and I didn't see much of her, except to get a prescription for thrush, because just having cancer is not enough for Ally!
Okay then, we are home safe and Ally has a lot more color! Good Night.
Posted by puddle at 3/26/2008 12:33:00 am
If you would follow Hillary Clinton from event to event you may well find her a candidate you could support, an anti-war, anti-NAFTA, populist on the stump
You would have to be following the whole campaign of the vicious attacks on Howard Dean, and Barack Obama, (even Bill Richardson), and have an understanding of her backers (whom she owes, in an old style way), and her electability argument of playing the very narrow electoral college game to get the larger picture.
And you would have to believe that BUSH CLINTON CLINTON BUSH BUSH CLINTON is change
She has simply made a bargain with too many devils to get where she is right now to be the name opposite Democratic Party and not one of them has to do with her gender which is where she gets the support that brought her this far.Phil Specht
Posted by puddle at 3/24/2008 05:31:00 pm
The Afternoon Report:
MONDAY, MARCH 24, 2008 04:23 PM, EDT
Ally's Mom writes:
I just got Ally's blood test results.
She needs red blood cells. I will be bringing her back to the hospital tomorrow for a transfusion. Hopefully it will just be a day trip (it takes about 4 hours for the blood to go in), but there is potential for it to cause a fever, which would put us in hotel Dartmouth for a night.
On the plus side her white blood cells are moving up!
Note from Ally's Great Aunt listener:
Also! Word has come that Ally received the quilt my daughter-in-law made for her, and they are bringing it along to the hospital tomorrow! :-)
Posted by puddle at 3/24/2008 05:23:00 pm
EASTER WEEKEND was a beautiful celebration for Ally and her parents! They got to go visit one set of grandparents who live nearby, then have the other set of grandparents over to visit. All the while, Ally ate well and they were pretty sure she was gaining weight. A very joyful and sunny weekend for everyone!
MONDAY, MARCH 24, 2008 11:44 AM, EDT
More happy Ally news...
Happy Monday to All,
This morning we had a visit from the visiting nurse. She drew some blood from Ally, we will get the results later today.
She also weighed Ally.....she is up to 16lbs and 5 1/2 ounces! A gain of 3 1/2 ounces over the weekend! We will take what we can get.
I'll post later about her blood test results.
Here is Ally enjoying her favorite snack:
Posted by puddle at 3/24/2008 04:25:00 pm
FRIDAY, MARCH 21, 2008 12:42 PM, EDT
Ally Prayers Appreciated...on this Good Friday...
Hello Windy Friends,
Ally had a visit from the visiting nurse today....she was weighed at.....16lbs and 2oz! Up from 15lbs and 11oz on Wednesday! I can't believe I am happy my almost 14 month old is 16 pounds (and not closer to 25 pounds) but I am! She likes yogurt mixed with whipped heavy cream, so we are going to keep feeding her that!
She also had some blood drawn, and her counts are down, they are watching to see if they get so low we will need to bring her in for a transfusion. They are also watching for when her counts start to go up and we can bring her for the SHORT trip to Boston (just a couple of days to get the stem cells, then they will freeze them). They predict some day next week.
We are also closely watching her temp. It was up in the 99s last night and this morning. If it reaches just over 100 we need to bring her to the hospital.
Needless to say we have bags packed just in case!
Ally's Candle Page:
Posted by puddle at 3/21/2008 04:38:00 pm
Mar. 21, 2:40 p.m. EDT — Full Worm Moon.
In this month the ground softens and the earthworm casts reappear, inviting the return of the robins. The more northern tribes knew this as the Full Crow Moon, when the cawing of crows signals the end of winter, or the Full Crust Moon because the snow cover becomes crusted from thawing by day and freezing at night. The Full Sap Moon, marking the time of tapping maple trees, is another variation. This is also the Paschal Full Moon; the first full moon of the spring season. The first Sunday following the Paschal Moon is Easter Sunday, which indeed will be observed two days later on Sunday, March 23. This will, in fact, be the earliest Easter since 1913.
Posted by puddle at 3/21/2008 02:40:00 pm
THURSDAY, MARCH 20, 2008 2:39 PM, EDT
Piglet's Mommy writes:
Happy Spring to All
Our next step (to keep us from having to bring Ally to the hospital for weight loss) is to fatten her up! It is kind of fun to feed your kid all the things you are not supposed to eat. Today she has been munching on yogurt that has 14 grams of fat in 6oz! We are also adding cream to her milk in her sippy cup, we have icecream, butter and other wonderfully fatting things for her to eat, hopefully she will!
We are also encouraging as much napping as possible, so she doesn't burn off any calories! She is in a cuddling mood...always wants to be held!
She is feeling good today, she has already pulled all of her toys and books off of their shelves and made 2 rooms super messy! If only she could put things back in a neat way........
Here is to an uneventful night!
Posted by puddle at 3/20/2008 05:21:00 pm
WEDNESDAY, MARCH 19, 2008 02:08 PM, EDT
We are home! Ally convinced the docs to let her out!
Hopefully we will not have to visit another hospital until next week!
Posted by puddle at 3/19/2008 08:40:00 pm
WEDNESDAY, MARCH 19, 2008 11:19 AM, EDT
With freezing rain in the northeast...
We have made it safely to the hospital. Ally is not as bad off as the doctors thought over the phone. They took some blood. We should get the results of those tests soon. If they are good enough we might be going home by noonish without any feeds from the hospital! Charming Ally drank some milk and ate some cracker right in front of the doctor, so that was good!
Wish us luck on leaving early and for safe driving.
Great Aunt June adds: Oh, the things we do for love.
Posted by puddle at 3/19/2008 01:54:00 pm
Posted by puddle at 3/18/2008 11:49:00 pm
TUESDAY, MARCH 18, 2008 04:43 PM, MDT
Ally's Mom's update. :-(
We are headed back to Dartmouth tomorrow.
The doctors are concerned about her weight and not eating enough, so we are headed up there to get some NG foods. GRRRRRRRR
Ally's Candle Page:
Posted by puddle at 3/18/2008 08:01:00 pm
TUESDAY, MARCH 18, 2008 09:27 AM, EDT
Sweet news from Ally's Mom ~
We are enjoying our time at home. Ally has been really sleepy the past couple of days...we expected that from the chemo. This round did not nearly upset her tummy like the first round did (same drugs, but she had a lot less going on this time). We are happy for the puke free days.
Her blood counts are down, so we have to give her a GCSF shot in her leg every day. I was the "lucky" one to do it yesterday when the visiting nurse was here. Her daddy is going to do it today! These shots will help her white blood cells recover.
When her counts are up we will be headed to Boston for her stem cell collection. This should only take a couple of days and we will be staying at the Ronald McDonald house. Ally doesn't have to spend the night in the hospital, but she is supposed to be relatively still for the 4-6 hours they are getting the stem cells from her each day.....I am thinking they are going to need to give her some meds to keep her sleepy, because now that she is feeling better there is no way she will be still for that long. Just while I have been typing this, she has ripped open an envelope, pulled apart a notebook and is currently trying to get to our container of change...I should probably pause and move her away from the change.......
As I was moving her I noticed she also managed to get a sock off.
So, this is going to be a peaceful day! (It is almost time for a nap!)
Thanks for reading.
Posted by puddle at 3/18/2008 02:59:00 pm
Posted by puddle at 3/18/2008 12:00:00 am
No Ally news today, so we figure they're home snuggling!
Here is a photo of the quilt my daughter-in-law just finished for Ally!
The other side has super-soft, blue, fuzzy cloth with yellow flannel edging.
The stitching changes colours! They are mailing it tomorrow. :-)
Posted by puddle at 3/17/2008 11:20:00 pm