The lady, falling, ringed
in rainbow, laced round with cloud
still bright
waning, gibbous, and
makes like the snow glow
luminous
the snow fawns
still lying along the
river in the night
Keen brittle air
moving with me as I moved
and remembered, once again
that you are far away
and how I hurt to have you here
in my bed as well as in my heart
Hurry home
jjl
22 January 2011
Friday, January 21, 2011 2:14 PM, EST
We are home. Everything went well. The doctor was able to save all of Ally's teeth. The front ones have white caps on them, and the back ones are covered in silver crowns. She is swollen and in pain, but luckily we have some good pain meds left over from NYC that the doctor said we could use. She is also cranky. Before her surgery she charmed so many people that we came home with THREE extra toys. Everyone loves her!!
Off to find some soft foods for her. Have a great weekend.
Thursday, January 20, 2011 9:04 AM, EST
Tomorrow we head to Manchester for Ally's dental surgery. She still has a bit of a cough and a runny nose. Please pray everything goes smoothly tomorrow. The most nerve wracking part is that the procedure is taking place at a different hospital with doctors we don't know and don't know us. It was a funny (on my side at least) conversation with the nurse who called up to get Ally's medical history. I asked her if I could just give her the high points...it was still a 15 minute conversation.
We have to be there at 6:15 tomorrow morning. The procedure begins at 7:30. I will update when we get home.
Saturday, January 15, 2011 3:43 PM, EST
Today we went sledding again! Ally had a good time [more below] ...
Here is Ally with Grampa...
On Friday Ally will have her dental surgery. All of her past cancer treatments have caused her teeth to decay. The plan is to X-Ray her mouth, once she has been knocked out, and then proceed from there. They are going to scrape away all of the decay and then cap all 20 of her teeth. It should take 2-3 hours for this surgery. The procedure will prevent her teeth from becoming infected and thus, help keep her adult teeth healthy. Ally has the sniffles and a little cough, please pray these go away soon, and do not complicate her surgery on the 21st.
Christina Taylor Green
Brave home
you need not stand as you weep ...
lie on the grave of a child now free
of your insanity
and let her jump
in your puddle of tears.
Having long lost our innocence
banner striped in blood
there in our flag, our anthem
Dear Country
Lay down your arms
if your heart be so dark
as to kill a child.
By Phil Specht on Jan 9, 2011
Wednesday, January 5, 2011 5:21 PM, EST
I got a call from NYC today. Turns out...Ally is HAMA negative! Wow...and her blood draw is tomorrow...they can now see into the future! (Actually, when we were up at DHMC last week for scans they drew a HAMA and sent it off....but never told us.)
Anyway, Daddy and Ally will be traveling to NYC on Ally's birthday and she will get her fourth round of 3f8. Happy Birthday to Ally. Kind of a stinky present, as it is a very painful week for Ally, but she should be recovered from her dental surgery by then, and moving forward with treatment is the best thing.
So, our upcoming dates:
January 21: Dental Surgery
January 29: Mommy, Daddy and Ally have birthday cake
January 30: Ally's Birthday/Travel to NYC day
January 31-February 4: 3f8
Sometime in February: Ally's Birthday Party
Ally is a little upset about having to go to NYC, and very upset that it messes up her birthday party/cake. We thought it best to wait until we get back to do her party, as it would be mean to give her a party and then make her keep all her gifts at home and travel to NYC the day after. We compromised and said we could have cake before we left and a party when we get back.
Friday, December 31, 2010 5:21 PM, EST
Today we celebrated CLEAR SCANS!!! by going sledding this afternoon. Here is a brief history of our past winters:
2007: Ally was a newborn, we stayed inside
2008: Ally was just diagnosed, we stayed in the hospital
2009: There was one major snow before her surgery in NYC, we took her to the park and she HATED it! She refused to ride in the sled (even on flat ground) and did not really care for the snow. Then, for the rest of the winter she was recovering from her surgery.
2010: (Today): We found a gentle slope and expected Ally to need to ride with one of us. The first ride she went down with Mommy. Then, she wanted to go by herself, and she wanted us to push her to go faster and faster! She even crashed once, and face planted in the snow. When Daddy caught up to her she was laughing hysterically. She had so much fun, and is looking forward to sledding again....we are headed to Uncle Larry's house tomorrow, and he has a pretty good hill!
It is so wonderful to see Ally taking risks (she even talked to my friends this morning, something she normally won't do). 2011 is going to be a great year for Ally!!!
Thursday, December 30, 2010 8:41 AM, EST
Clear Scans!!!!!!
The MIBG and CT showed no tumor. We should hear about the bone marrow next week.
A couple of things to note: one of Ally’s kidneys has always been larger than the other, and it seems to be doing more and more of the work, while the little one is doing less and less. Also, a vein in her abdomen seems to be enlarged. They are confident it does not indicate cancer, however they are looking into it, but did not seem that concerned.
HAPPY NEW YEAR!!!!!
(Ally gets another HAMA draw on Thursday, January 6.)
Tuesday, December 28, 2010 5:13 PM, EST
Everything went well today. Ally even got to choose a gift from under the tree in the playroom. Tomorrow her scans are scheduled to begin around 2:30. Please pray that Ally and I are both patient with the no eating thing all day. Also, we need lots and lots of prayers for clear scans. Hopefully we will know something tomorrow, but we don't always get results right away.
Also, thank you so much for praying for our friend. She delivered even sooner than expected. The baby is here. It is 4.4 pounds, but the text said: "Tiny...but healthy". Please keep them in mind as tiny babies need even more care.
Monday, December 27, 2010 10:55 AM, EST
We have already been out to shovel. Ally had a blast shoveling the snow back onto the walkway.
Tomorrow we are supposed to go to DHMC [the most local medical center] for a port access and an MIBG injection. I just got a call from the MIBG department (nuclear medicine) saying they do not have the dose right now, and with the storm they may not get it in time......
I will have to call them around 10:00 tomorrow to check and see if the plane was able to arrive, and then the truck was able to drive there....the odds seem very low that we will be able to do this tomorrow.
I do not know what this will mean for the rest of the scans (CT and Bone Marrow). I guess I will find that out tomorrow as well. This just adds more stress on top of the already stressful situation of scans.
Please pray that the weather will lift in time for the delivery. Also, we have a friend who is having a baby soon, and things are not going 100% perfect with the pregnancy. She will be induced next week sometime. Please send prayers her way for a happy outcome and a healthy baby.
I'll be sure to update about what is going on with the injection tomorrow.
We have had a magical Christmas so far.
Ally has been so excited for the whole week. We were worried she would not be able to sleep last night. Nope...she was such a good girl, she fell right asleep. We actually had to wake her up this morning too! Ally was very excited to see that Santa had eaten his cookies and drank his milk. She opened her presents and then would play with each of them for a little bit, before moving on to the next. Toward the end she was just ripping through them, tossing the paper to the side. It was fun to watch. She was very excited for all of her presents, excepts the clothes, which she tossed to the side...it was reminiscent of "A Christmas Story". She has had tons of fun playing with all her new toys and hanging out with all the Aunties, Uncles and Grand Parents.
Wednesday, December 22, 2010 12:58 PM, EST
Ally is HAMA positive. I am still waiting to hear back from the NY hospital as to our next step. We will either wait 3 weeks and draw HAMA again, or go the Rituximab route again. I bet I will have to call them back tomorrow.....
Anyway, that means we do not need to get on a train first thing in the morning on the day after Christmas, and we will do all of Ally's scans at the medical center an hour away, next week. Please pray for clear scans, that would be a wonderful Christmas present!
WhoooOOOOOOOOOOOoooooooo
..........==========||||||||||..................|""|
..........._|.The Polar ..|.|.|___|"""""""|♥|[(<
..........|__Express!__|.|__.._.._.._.._.._.._||_
............( + ).....( + ).....( + )( + )( + )( + )..\
""""""""""""""""""""""""""""""""""""""""""""""""""""
Sunday, December 19, 2010 7:21 PM, EST
What a magical evening! The Polar Express was fantastic! Ally had so much fun. But let me backtrack.....
Our day began with a quick visit from Grammy and Grampa on their way to Vermont. Today was the family party in Vermont. We were sad to miss it, but the North Pole was calling.
Just after Grammy and Grampa left we got a visit from our neighbor, and then the Christmas Bunny showed up! (Pictures to come later in the week.) Ally was very surprised with the Christmas Bunny, and has lots of theories about her.....
A bit after lunch we headed up to Lincoln and checked into our hotel. Ally explored the room a bit and then was asked to lay down for her nap. After 30 minutes of tossing and turning she confessed that she was just too excited to nap.....oh no! Well....we decided to use our dinner voucher for late lunch/early dinner. It was yummy. After we ate we headed to the Hobo Railroad, for our Polar Express trip!
The trip began with a delicious cup of hot cocoa, followed by a chocolate with a center as white as snow. We arrived at the North Pole and an elf jumped on the train looking for Ally and the other Make-A-Wish child. We got our very own Elf Escort. Ally was so excited she even held the Elf's (whose name was Twinkle Toes) hand. We walked up the path to the theater at the North Pole. There, we met the boy from the story, who is now an old man. He read his story to us, and then Santa came!!!! He made his way around the room, and when he got to Ally he picked her up and said, "Another angel for the tree!" (Ally was not expecting to be picked up, and her whole body went rigid with the surprise of it all.) After Santa was done greeting everyone he chose one boy to give the first gift of Christmas to. The boy chose a bell from Santa's sleigh (just like in the book!). He even asked if ALL the boys and girls could have a bell. When we got back on the train everyone got bells and sang Christmas songs on the way back to the train station. We even had enough time to meet the other Make-A-Wish family (who are also from Concord!). They are super nice and we are going to try to meet up soon, as their kiddos are around Ally's age as well.
Ally had so much fun! The Make-A-Wish organization has been great to us! When we arrived at the hotel there was a bag with some goodies for us, plus they paid for our dinner and trip. We are so glad that Ally was able to participate this year. She is going to be talking about this for a long time.
(P.S. Pictures are not allowed at the North Pole, but we do have some from the train ride...coming later.)
We get HAMA results on Wednesday. If she is negative we head to NYC right after Christmas and stay for 2 weeks: 1 for 3f8 and 1 for scans. If she is negative we have scans planned for DHMC between Christmas and New Years. Scans are ALWAYS nerve-wracking...please pray for clear ones!
I've been *making* Solstice Gift Givers for well over twenty years. In fact, I began making them to *avoid* having to buy them. I've been around dozens of other makers, and seen work I deeply admired. Until this morning, I have never bought one. . . .
His name is Ded Moroz, and he's Ukrainian.
Thursday, December 16, 2010 10:08 AM, EST
Ally has a yucky cough. We were given permission to use a cough syrup to help her sleep (even though she won't be 4 until the end of January). It helped last night, but she has a very hard time falling asleep. She has taken the last two days off from school. Today she is going to school. Please keep her in your thoughts, so that she will have enough energy for the Polar Express on Sunday. She is soooooo excited to visit the North Pole. Make-A-Wish is even putting us up in a hotel for the night and giving us dinner. We are hoping the snow blows out to sea and we can have a magical evening! I will be sure to take lots of pictures and update about our adventure.
Solstice is coming,
The goose is getting fat.
Please to put a penny in
The old man's hat
If you haven't got a penny
A ha' penny will do.
If you haven't got a ha' penny
Then God bless you!
jjl
Pure
As the driven snow is pure as a babe's heart
born in a stable
when hell freezes over
when the firmament rises from the depths
and on turtles back we land on shore
to hurry into the mud before winter.
The void is cold and black
snow cold and white.
Life was hard before fire.
So we tend the fire of humanity's warmth
or try.
God's gift of Love, mother earth turning
towards the sun yet we slip towards solstice.
Days shorter, shortest.
And give gifts to each other
Happy to be alive and saved.
No need to question
the act is the answer.
Give and you will receive.
jjl
I know none of the hundred Inuit words
But today the snow broke in big blocks
(as I plowed), and they were building blocks.
A child could make a snow fort (or igloo)
and the fury of the drift making wind,
the heavy wet snow not heavy enough
but with plummet of temperature now dense
not hard, shapeable
leaves this snow with a name.
yet were you outdoors without shelter
as nature gave this gift you would die
so as with an economy not well aputiak
we build with imperfect snow what may be
a temporary shelter waiting for the great storm
that delivers the real thing
building block snow with a price.
Monday, December 13, 2010 8:07 AM, EST
We had a great weekend! On Saturday we had breakfast with some friends. Ally was very excited about her pancake with the fruit face. Later that day we went to a Christmas party. This party was put on by New Hampshire Childhood Cancer Life Line. This organization has been great. When Ally was first diagnosed they sent us a bunch of stuff in the mail, including big gift cards for local grocery shopping, a blanket and some other trinkets. They have all sorts of events, and a summer camp (that I think is free), but this is the first event we were able to attend. Ally had a blast. She decorated a gingerbread house, made an ornament and decorated a picture frame. Santa was there and Ally did a little dancing. There were not too many people there, so it was just Ally's speed. She enjoyed herself very much....you can see how much she enjoyed the cupcake in the new picture!
On Sunday we brought Ally to Grammie and Grampa S's house. She had tons of fun putting together a toy train, making yummy pumpkin bread and making ornaments, while Mommy and Daddy took a few hours to go Christmas shopping and have lunch at the Taste of India in Dover (our favorite restaurant from when we lived there)!
Ally does have a nasty cough and a sometimes runny nose. Her temp has remained normal, please pray that it remains so. Daddy is home sick today too.
Seem to have missed the snow and ice. Or it missed me. Got a bit of rain this morning, and most of the ice has disappeared from the river. Tomorrow: back to brutal.
Your diamonds in the sky with Lucy, mine in the snow
today as the sun rose in the woods, the temperature dropped
a magical mystery tour, as flakes turned to crystal
and your voice in my head, (we fed our heads together John, those years)
no music to the magic today but yours
woodland turned to white strawberry fields
as I try each day to imagine, and in the silence
of your absence have songs
playing now only in my head with yours
come together
Sunday, December 5, 2010 4:20 PM, EST
This weekend we got our Christmas tree. Ally thought it might be too big, but as it turns out it fits perfectly in our living room. Ally had fun decorating it.
This past week I have not been feeling well, and a doctor told me I have bronchitis on Friday. Today we were at the Make-A-Wish Holiday party and about 20 minutes after we got there Ally started to shut down. A little bit later she said her tummy hurt. She slept for the 20 minute ride home, and then again for another hour and a half when we got home. Her temp is running in the high 99s. Please pray we don't have to take her up to the hospital tonight or tomorrow, and that a good night's rest will rid her of her fever. We were sad to leave the party so early, because it was AWESOME, and we only got a little taste of it. We will be sure not to miss next year's party!
That's it for now, I will be sure to let you know what happens with the temperature.
http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=allys
Ally’s Story:
Since February 2008, Ally has been fighting Stage IV, high-risk Neuroblastoma. She has undergone numerous rounds of chemo, 20 sessions of radiation, tandem stem cell transplants, 2 major operations, and too many scans and smaller procedures to count. Ally went into remission around Thanksgiving of 2008. The tumor returned in February of 2009. She is currently undergoing 3f8 treatment at Sloan-Kettering in New York City. As of November 24, 2010 she is HAMA positive, and on hold for treatment until she becomes HAMA negative. In December 2010 she will undergo dental surgery to correct what the chemo and other treatments have done to her teeth. She is also up for her 3 month scans, around the same time.
Ally Update:
Happy Hanukkah to our friends who celebrate!
Today is my second day home sick. (I know this blog is about Ally, but, hey, I write it!) I have not taken a sick day for myself since before I was pregnant with Ally, and now I am on day two. I am pretty sure it is the flu, even though I got the shot. The worst part (other than the screaming migraine) has been staying away from Ally, so she doesn't get sick.
Anyway...on to Ally. Today I e-mailed her doctor at Sloan (who has been much easier to work with lately!!), and here is the plan: We will draw Ally's HAMA on December 16th, with results on the 22nd. If she is HAMA negative we will head to NYC for 3f8 and stay for 2 weeks, with the second week being for scans. If she is positive we will plan for scans here. The doctor in New York said we can even do bone marrows up here, which is a change in what they have said before, but works in our favor, so I will not complain.
Our only setback right now is Ally's weight. Since she has been off the appetite stimulant medicine she has lost between one and two pounds. Not cause for concern just yet, but we are keeping our eyes on it. Please pray that she finds a tasty, high fat, Holiday treat that will put some pounds (or at least ounces) back on her.
Ally is in love with the Holiday Season. It is so magical to watch her be so excited about everything! Life is good right now!
♥ A L L Y ♥ U P D A T E ! ♥
Wednesday, November 17, 2010 6:44 PM, EST
Tomorrow Ally has a HAMA draw. We will find out the results next Wednesday; to see if we are headed back to NYC, or if we need to wait it out longer.
Ally has been doing well lately. She is enjoying school. One of her favorite games to play is "Circle Time." This is when we all circle up (stuffed animals included) and we sing, Ally reads a story, and other activities happen.
That's it for now. Thanks for checking in on us!
P.S. The new picture is Ally "knitting." She likes to copy what we do, and I have been knitting like crazy lately!
Nancy *did* say that it was snowing lightly up on her ridge around five. Ain't seen nothin' down here, though.
Wednesday, November 3, 2010 8:04 PM, EDT
Every night we read Ally 2 books after we have hooked her up to her pump; one of which is a goodnight book. She has been choosing Good Night Moon for the past couple of months. We have gotten into the habit of letting her choose what is jumping over the moon. Here is what transpired this evening:
Daddy: What is jumping over the moon tonight?
Ally: Pa pa pa pa, something that starts with pa pa pa
Daddy: Penguins?
Ally: PIGGIES!!!!!
Daddy: Ok
Ally: Tomorrow night it will be wa wa wa dubba dubba dubba doubleyou WORM!!!!!
Daddy: WOW! "In the great green room....."
What a fun kiddo we have!
On Tuesday Ally got to be in a marching band at school. All the kids had instruments (Ally had something that shakes and make noise) and marched around the playground. She LOVED it! She is VERY secretive about what happens at school, and rarely shares anything that happens there, but she was willing to tell us about the marching band. In fact, we now have several homemade instruments around our house. Super fun!
As of right now we are in a holding pattern for 3f8 treatment again. She gets HAMA drawn on the 18th, with results on the 24th. Hopefully it will be a great Thanksgiving with plans to go to NYC the following week. (Anything is better than the Emergency Room Thanksgiving of 2009.)
I don't think though that I've ever realized until today how much like Christmas voting is to me. It's all anticipation. Now I feel letdown and worried; it's all over for me, but the counting. And I'm afraid that's going to be really *ugly.*
Next life, I'd like to live in a country full of patient realists instead of antsy two-year olds.
katy99780
Home is where one starts from. As we grow older
The world becomes stranger, the pattern more complicated
Of dead and living. Not the intense moment
Isolated, with no before and after,
But a lifetime burning in every moment
And not the lifetime of one man only
But of old stones that cannot be deciphered.
There is a time for the evening under starlight,
A time for the evening under lamplight
(The evening with the photograph album).
Love is most nearly itself
When here and now cease to matter.
Old men ought to be explorers
Here or there does not matter
We must be still and still moving
Into another intensity
For a further union, a deeper communion
Through the dark cold and the empty desolation,
The wave cry, the wind cry, the vast waters
Of the petrel and the porpoise. In my end is my beginning.
~~T.S. Eliot
(I’m an Admissions Officer and am working at a college fair. We are not religiously affiliated. I run into an alum.)
Me: “Hi, is your daughter interested in [college]?”
Alum: “I’m an alum. Class of ‘83.”
Me: “Fantastic! I’m Class of ‘04. Can I answer any questions for you?”
Alum: “I won’t be letting my daughter look here. I have some issues with how [college] is being run. God is not happy with you, and neither am I.”
Me: “I’m sorry to hear that, ma’am. If you’d like, I’d be happy to take your comment back to the Vice President of-”
Alum: “Are you aware that you let in students with liberal views and speakers with socialist leanings?”
Me: “Ma’am, we have a great deal of speakers on campus with a variety of view points.”
Alum: “The school has gone downhill since we let in those people! So I’ve stopped giving money. You can take that back to them. You’ll no longer see my $25 a year.”
Me: “Ma’am, as an alum myself, I’m proud to have graduated from a school that encourages both freedom of thought and speech in our students and speakers.”
Alum: “You don’t need freedom of speech if you let Jesus think for you.”
leaving history to a place as relic
in the museum of old thought
brings the end times into a glass case
alongside communism
sweeping the floor a janitor might muse
what thought might be encased next
in the now empty case where
transparency escaped to wikileaks
servers in the culture of now
and immediacy of outrage
coming next the schoolchildren
in the museum tours
writing papers on this field trip
and they all write
about the "nothing" (if they haven't left
for the street demonstration
to practice non-violent action)
By Phil Specht on Jan 16, 2011