To honor women on International Women's Day, an old poem found in a notebook
Girls
There's something in us that waits,
eager children who are taught
to believe in Santa Claus,
Tooth Fairies, the holiness of birthdays.
It may be true to say we
females of the species are born
in love, learn longing through
our mother's embrace, trust it will
be satisfied, that earth and sky
are so designed to meet the heart's
desire, and it is all desire always
even when the hawk kills the swallow,
the snake devours the rabbit,
the father leaves his family,
the teacher reprimands, the best
friend betrays, the loved boy mocks.
Longing doesn't leave, isn't dismissed,
shunted aside and life approached
assertively, without pity for loneliness
or the sadness of rejection and denial.
No, we continue to wait and believe
eventually you will convince me
that you love me, take me
into your soul and cherish me.
But, it rarely happens if at all
and when it does, it doesn't last,
won't repeat, but still we wait,
hoping, believing in fairy tales.
(I will never again, (never say never)
ask you to love me more than I
love myself. Your love is a gift, she said,
and now to get on with living.)
~~ Pat Maslowski
Tuesday, March 08, 2011
Monday, March 07, 2011
Monday, March 7, 2011 11:51 AM, EST
Ally decided to share her illness. Daddy and I have been VERY sick since about 5:00 last night. We are finally coming around, but got very little sleep last night. At least we did not have to go the hospital. If she felt like we do, than that girl is my hero, because she never complained. I guess we will have to go back to work tomorrow, thankfully Ally is spending the day at Grammy ad Grampa's so Daddy and I can rest up, drink clear liquids and eat crackers. Oh I can't wait to feel better.
Sunday, March 06, 2011
About the flood. . . . Guess it depends on your point of view, lol!
An hour and a half ago:
A half hour ago:
A half hour ago:
Saturday, March 05, 2011
from listener:
So, I sent Ally’s Mom a note, since she has her computer with them. I asked:
“What's the latest progress report? Has Ally been fine once she stabilized? Any chance they'll give you a reprieve and let you go home this evening?”
Three minutes later came this reply:
“The papers are being drawn up for us to go home. That usually takes an hour or so.”
{{{ Hurrah!! }}}
Saturday, March 5, 2011 12:46 PM, EST
Yesterday Ally threw up a few times. She had some diarrhea right before bed, and then threw up again. We decided not to hook her up to her night time feeds, as we didn't want to be cleaning puke up all night. Around 4:00 this morning Ally called for Daddy because she was having a bad dream. He brought a blanket in and slept on the floor of her room for a while. She kept making noises and even yelling out half sentences. A little bit later I went in, we put her mattress on the floor between us. She wasn't really responding to us, but we thought she was just working through her sickness. A little after 5:00, we both couldn't sleep so we carried her downstairs and snuggled on the couch. We tried to wake her up, we were yelling her name, we where moving her about, rubbing her breast bone, nothing was rousing her, she was starting to seize up and looking off into space with mucus coming out of her mouth. We quickly got clothes on and rushed to the ER. They worked fast, and Daddy figured out they should check her blood sugar. It was critically low. They gave her some IV sugar and within minutes she came around, could talk to us, and seemed very confused about how she got to the hospital.
This was one of the scariest moments of our lives. We follow a couple of other kids on Caringbridge and we have heard many stories, so thoughts of strokes, seizures, blood clots and everything else was running through our heads. In my mind, I did not see a way she was not going to be harmed by this. But, alas, we are currently watching our 7th episode of Curious George, and Ally is ready to go home. The doctors, however, are not ready to let us leave. They are VERY concerned about her cancer diagnosis and it looks like we will probably spend the night.
Ally is fine though. Ally is fine.
We feel pretty stupid for not giving her the feeds last night, as in retrospect she had really had nothing to eat all day, because she threw it up, and then we didn't give her the feeds, so of course her blood sugar dropped. We already have a plan if she is vomiting in the future, so hopefully this will never happen again.
She is fine. We are fine, and she has already accumulated 3 stuffed animals.
Tomorrow will be a better day!
Friday, March 04, 2011
Thursday, March 3, 2011 2:53 PM, EST
Here is a picture of Ally taken a year ago. 
Over the past couple of weeks I have been looking back over pictures of Ally in her past treatments. I was recently connected with another family in NH that has a son battling NB. They are down in Boston today, beginning a stem cell transplant. I have been talking to the mom on the phone about our experiences. At first I wasn't sure I wanted to connect with them, but I am glad I did. It has brought back a lot of memories and feelings, but I think the mom appreciates my take on things. We have also connected with a family from Ally's preschool. Up until recently only Ally's teachers and the school nurse knew about her medical history. It was frightening, letting others into our little world....they are such a great family, and I didn't want to scare them off. So, it has been a couple of weeks of talking about Ally's history. It is overwhelming.
And now to move on....
This week is vacation week!!! On Monday we just chilled out at home, because the weather man lied to us, and told us it was too dangerous to drive, so we did not go shopping, but stayed home and watched the rain (not sleet or freezing rain, or snow) come down...oh well, we cuddled like crazy. On Tuesday our good friend and awesome Mommy came over with her 2 month old son. This is the little 4 pounder I asked you all to pray for. He is over 8 pounds now, and could still use some prayers (can't we all!) Ally loved playing with him, and did a great job holding and feeding him. Yesterday we met up with Auntie Kelly at the Children's Museum. Oh the fun that was had! It was great to see Ally with so much energy. She loved it there, and wants to go back soon! We even met up with Grammy and Grampa for a tasty lunch of crepes!!! (Highly recommend the crepe place!) I think Ally is going to force Grammy and Grampa to bring her back there soon (on a non-school day of course!) Today we went over to one of Ally's preschool friends’ house. Usually Ally is very shy for the first 20-30 minutes anywhere we go...not today. The girls had a blast, and I had so much fun talking to another Mommy. Tomorrow we are going shopping with Auntie Lynn and maybe Uncle Jason! Then we get a whole weekend with Daddy!!!!
At school Ally has been learning about community helpers. Her favorite game to play with Daddy is "Vet". Daddy will bring in an animal, describe the symptoms and then Ally will treat the animal. It is very cute, because she knows so many medical terms, but does not always use them properly. I love to watch (as I am not actually allowed to play...this is an Ally/Daddy game).
Ok, I guess you can tell Ally is napping right now, as this is becoming an epic post, so here is the medical stuff:
Ally gets HAMA drawn again on March 17. I actually have to take her to the medical center for the draw, as our regular visiting nurse is out on medical leave, her backup is out on maternity leave, and the 3rd nurse is not allowed back in our house. Plus, we need the blood back, because we have to ship it, overnight, to NYC, and the local draw stations will not give it back to us. Road trip! We also have scans coming up at the end of the month. (Always a nervous time for us, please keep clear scans in your prayers.) If she is HAMA positive we will scan in NH, if she is negative we will take 2 weeks in NYC for scans and the 3f8 treatments. Details, details, details.
Have a lovely weekend!
Wednesday, March 02, 2011
MojaveRainStorm
Watching Dusk
Flotsam jetsam
gin and tonics
on the deck
Captain Nemo
torments his organ
the same tunes every night
We talk you and I
melodies free us
from time through time
Stark pine boughs
arrange their faces
breathing mythical realities
Kites and swallows
growl as dogs hover
slavering jade air
Chewing memories
salt, lemon, cinnamon
the sky's a traffic jam
Charcoal vortex
millions of eyes
twitching grabbing
History pounces laughing
daubed in smears of incense
we cannot run away
~~ Pat Maslowski
Tuesday, March 01, 2011
Monday, February 28, 2011
Relentless in our search for ease.
There is a wind gap on the ridge.
Settlers and immigrants and soldiers
following the indian trading trail
centuries of bringing trade goods
to the rendezvous.
Around the first point there it is,
visible a mile away. A destination.
How far we go for a little ease.
The wind too must have thought it so
down off the glaciers of the ice age
finding the beach of an earlier sea
to move relentlessly century after century.
How far we go for a little ease,
if we are the wind.
One big flood, water cuts a valley, all downhill.
Wind too but not so fast. Relentless the earth spins
ocean steady of temperature as land holds back the glacier
or not, air rushing to and fro, lifting falling.
Falling, falling, falling off the ice onto the ridge
pushing the beach of the earlier sea
into the valley. "There." "The gap."
A marker as much as an ease perhaps,
directions are always helpful. "Turn right."
"Exit here." voice on dash, wind listening
to ancient beach and distant ocean,
what moves us to turn. To go a mile to ease a climb.
Relentless in that search we no longer
use our eyes, we do not see,
the voice in our head, our car
says turn right and we do not see.
So blind now and turning right
still taking the easy way we join nature
relentless down hill or up, on the way to the beach.
As was the wind, as was the wind.
Friday, February 25, 2011
Tuesday, February 22, 2011
Sunday, February 20, 2011 4:36 PM, EST
This weekend we had 2 birthday parties for Ally! (If you are keeping track, those would be her 3rd and 4th parties for her 4th birthday!)
On Saturday we had about a dozen friends over with their mommies and daddies. We enjoyed a pancake breakfast, followed by the most delicious Abby Cadabby cake! All the kids played well together and Ally had a great time!
Today all the relatives and adult friends came over. Ally was spoiled with gifts! (Turns out puzzles and books are a big hit with 4 year olds, as well as shopping carts and tools.) Today we had pizza, brownie sundaes and left over cake. Delicious again!
On Wednesday we will find out the results of Ally's HAMA draw. Mommy and Daddy have to work every day this week, but Mommy gets next week off for "February" Vacation! We already have lots of plans in the works.
That's it for now, enjoy the snow again!
Monday, February 21, 2011
Sunday, February 20, 2011
Rembrandt. Aristotle before the Bust of Homer (1653, New York, The Metropolitan Museum of Art)
On your Grandmother's hundredth anniversary of her birth.
The written language has its own life.
The world opens forward and back in time.
Eventually into the mists as all memory fades.
Meanings change though events happen.
Next year (see how easily I slip into the future,
in the sand country of central Wisconsin's poor farms
and deep winter snow a baby girl was born in 1912
now deep in the past) it will be a century,
another mark of time.
My Grandfather, my cousin, Bonnie, on the other knee
sounding out the words in the Sunday comics,
laughing with delight as we first recognized some;
a laugh you got to hear repeated by my Uncle Lloyd
(the day he gave you that lucky fishing hat)
as your brother played pinball with him in the tavern.
Time works that way.
Generations pass down laughter in the good times
along with love of words ...or fishing.
Love of the written language
that comes from the century of oak for heat,
kerosene for light. I found books in the attic
of my Grandfather's back another century still.
He taught her to read on his knee as well.
Teachers College and one room schools.
Patient sounding out the words, it was phonics back then.
Like Dad, I too married a woman who loved to read.
Your pedigree set to be a man of letters
before your own day of birth.
Magnet letters following on the refrigerator.
The same three letter alphabet floating in milk
you text me now.
The affirmation of "Yep" always good for a smile.
and timeless
Monday, February 14, 2011
Monday, February 07, 2011
Monday, February 7, 2011 11:16 AM, EST
We had a wonderful weekend together. It is so nice to have Daddy and Ally home again.
This morning I brought Ally to the dentist for a follow up from her surgery. The dentist was fantastic! Did I mention how fantastic they were on the surgery day? The dentist remembered Ally's history, and he checked in with her Dartmouth doctors the night before. Except for the fact that we were at the hospital, having surgery, it was one of the best medical experiences we have had......okay, back to this morning. The dentist was pleased with how Ally's teeth look, and he said that we were doing a good job keeping them clean. It is very nice to have supportive people!
That's it for now. I have a parent/teacher conference with Ally's teacher tomorrow, we are going to draw HAMA next week and enjoy having Ally home for a while!!!
Saturday, February 05, 2011
Thursday, February 03, 2011
Thursday, February 3, 2011 8:32 PM, EST
Daddy said Ally's pain seemed less intense today, but lasted for a longer duration. On the walk home (Daddy carrying Ally) she got a coughing fit, and puked up some mucus, into Daddy's hand....no idea what happened to the mucus, but if you are walking down First Ave, between 68th and 73rd, watch your step. The coughing fit continued when they got back to the Ronald. Ally was very upset, more about not being able to sleep, rather than the actual coughing. A bit of a snuggle from Daddy and everything was alright. I happened to be on the phone with Daddy when this was happening, and it was not fun to listen to. We debate about which part is worse, being there with Ally and watching her be in pain everyday, or being at home and not being able to be there to comfort her. I guess we both lose.
Wednesday, February 2, 2011 7:20 PM, EST
I don't have too much to report. Things went well today. They used one rescue for Ally and then she rested comfortably. Strangely she popped up soon after she settled in and started crying that her legs hurt. They quickly gave her another rescue and she settled back down.
Auntie Kelly made it safely to the city, leaving the snow behind her!
Did I mention how awesome my neighbors are? They helped out again with the 20+ inches of snow! There was even a snowblower fairy in the neighborhood. I am not sure who he was, but some nice man came over and snowblowed the end of the driveway and the walkway after the plow came by and left a foot of snow at the end of the driveway, and snow up to my waist at the end of the walkway....thank you snowblower fairy!!! Come back whenever you want!
Two days left, and Ally is a super champ!
(I took the picture above this morning, when I was talking to Daddy and Ally on Skype. She perks right up in the morning!)
Tuesday, February 01, 2011
Tuesday, February 1, 2011 6:18 PM, EST
Today was much smoother for Ally and Daddy.
Ally woke up a little after 7:00, which is late for her. She woke up perky and ready for they day. The 2 of them headed down the street for some breakfast, and then settled into the room to play with all of her new toys! They also made a trip to the playroom at the Ronald.
Around 12:30 the hospital called and they headed down the 5 blocks there. As soon as they got to the hospital they were shown to the room and Ally was hooked right up. She got her premeds, and by the time I called (around 2:00) the 3f8 was in, and she was feeling the pain. So far her pain has been much less than in past rounds (not sure what to make of that, but they did tell us every round would be different). This is good, for obvious reasons, but also because she only needed 1 rescue. The rescue meds help ease the pain, but they also relax her body so much that her breathing slows and then she needs oxygen, which she hates. With less pain meds her oxygen stayed level, as did her heart rate today, so they were out of there around 5:00 tonight! Daddy said he actually preferred this afternoon schedule (today, not yesterday), and if it ran like this for the rest of the week, would recommend doing it each time, as things move quickly. (When we go in the morning, there is about 1-2 hours of "down time" in the morning.) They are all set to head to the family dinner at the Ronald tonight and Auntie Kelly should be arriving in the Big Apple this evening as well! Yeah for an extra set of hands!!!
Ice Cream Cake: On top of the awesome...whoops, radical, banner and toys they wanted to give Ally an ice cream cake. She is a very picky eater and was getting cranky from being at the hospital for so long, so Daddy said they were all set. The Child Life Specialist came back a couple of minutes later and said the nurses would really like for Ally to have the ice cream cake (and for them to share it with her). This story was much funnier/more interesting in my head last night, and now I feel lame writing about it, but I promised, so I did.
Dental Surgery: Daddy mentioned Ally had this done and the nurse practitioner he was talking to relayed that several of their patients needed this done as well. It made us both feel really good that it WAS because of her chemo and not us giving her pediasure, juice and other things whenever she wanted them, and thus ruining her teeth....we always knew it wasn't our fault (no matter what that stupid dentist said), but it was nice to hear that it is common with kids in Ally's situation.
Okay, so things went well today. Auntie Kelly will be there to help out the rest of the week, and Daddy said they only got rain there today and it looks like rain there for tomorrow....that just leaves me to shovel up the 23 inches we are supposed to get!!! (By the way, have I mentioned how AWESOME (I can use that word, because I am not talking about Ally) our next-door and across-the-street neighbors are? They help us out a ton by using their snow-blowers in our driveway! Yeah to Ed and Frank!!!)
Monday, January 31, 2011 9:36 PM, EST
Here is my ramble (Try to follow my segmented train of thought):
Today was a looooooooooooooooong day for Ally and Daddy. The plan was to begin around noon. The hospital asked them to get there at 9:30 this morning to get things started and whatnot. When I called Daddy around 2:45 they had not yet begun, were still in the playroom and had not eaten lunch. Despite this Ally rocked it out! She played with some of the volunteers, and gave Daddy a little break. Word spread that it was her birthday and boy did they make it awesome! When Ally finally got back to her room, around 3:30ish they had a huge banner with a pig on it and LOTS of presents! They had to find a bag for Daddy to bring it all home in. Who knows how it will get back to NH?!?
Daddy said Ally did great with the 3f8. She seemed to have less pain than in past times, and even had some pain rescues left over. (In the past she has needed all of them, and on one occasion needed an extra beyond the normal.) They were at the hospital until 9ish tonight. (Yup, that's 11.5 hours today!) Ally needed oxygen, which she HATES! She actually covered up her mouth and nose when they started it. Really, she just needed to cough a few times to loosen some stuff up, but she refused. Hopefully Daddy will be able to process that with her tomorrow, so they will be able to get out of there sooner. Speaking of tomorrow, the plan is for the hospital to call Daddy's cell phone when they are ready for them to come to the hospital. At least now they won't be stuck at the hospital all day. Hopefully they will be able to begin sooner tomorrow as well. Ally did great, and Daddy is the real hero of the day. He made sure Ally was happy the whole time and remained calm!!!
So much is going through my head that I can't make sense of it all, tomorrow I will tell you about the Ice Cream Cake! and the dental surgery. Right now I am just relieved they are back at the Ronald, Ally is resting comfortably, and Daddy finally gets to eat the left over cereal from this morning. I love those two!
Monday, January 31, 2011
That was early morning from the kitchen window; this was late morning from the front porch.
There was *more* snow that afternoon, evening and night. . . .
Sunday, January 30, 2011
Sunday, January 30, 2011 8:44 PM, EST
Daddy and Ally have made it safely to "The Ronald". Reports indicate a very long and boring train ride, with a 20 minute nap. Despite this Ally remained pleasant. At Penn Station, when we get off the train, there is a flight of stairs that needs to be climbed. They are narrow and steep...not an easy climb with a 4 year old, a backpack, the world's heaviest suitcase and hundreds of other people doing the same thing. Ally kept telling Daddy he was doing a good job carrying all of the heavy stuff. She even said he could take a break at the top of the stairs, before heading up to street level (at least there is an escalator there!), she is a sweetie. As soon as they got outside Daddy was able to hail a cab...as soon as they got outside. He mentioned this awesome (oops, I mean radical) moment of cab hailing at least 3 times in the 15 minute conversation I had with him. They got to the Ronald, Ally got a toy (the Wonder Wheel) and settled into their room at the back of the house (the quiet side, away from the street noise!). Ally did another fantastic job at the grocery store and at the dinner the Ronald provided for all of the families. Daddy said today was an awesome...I mean radical...(it's really hard not to use that word, it would be like not using "wicked", here in New Hampshire) day for Ally. He said she is the "Queen of New York". They have already run into some old friends, and Ally is already less shy with people (we told her that when you turn 4 you are no longer shy....I think she actually believes us!). She is such a good girl. I miss them both so much already.
Friday, January 28, 2011
Friday, January 28, 2011 6:44 PM, EST
Ally and Daddy are off to New York on Sunday. Tomorrow we will celebrate Ally's birthday with a cake, some gifts and a visit to a friend's house (mommy and daddy's friend...but whose keeping track? At least they have a brand new baby to entertain Ally!).
Someone from the New York office called. It turns out they are "overbooked" for 3f8 next week. This means Ally is on the afternoon schedule. It should start around noon, instead of 8:00. We are not sure what this will mean, as, in the past Ally would kind of snap out if it around 5 or 6, just in time for dinner. Daddy is confident he will figure it out. Thankfully, Auntie Kelly will be joining him half way through the week!
The injections we have to give Ally are causing her huge welts at the injection site. We have to give her benadryl every 4 hours to keep them under control. She has been very sleepy the past couple of days. Luckily they are not bothering her too much.
That's about it for now. I will update at some point on Monday or Tuesday.
PS: Ally does not like the word "Awesome," she prefers "Radical."
Monday, January 24, 2011
Monday, January 24, 2011 6:44 PM, EST
Ally is doing great! She woke up on Saturday morning and returned to her normal self. We gave her some regular Tylenol just a couple of times that day, and she has not needed any since. She is easing her way back into crunchy foods, and as a special treat we went to the Olive Garden for dinner tonight. She LOVES the cheese they put on everything! She even got a second helping of cheese on her pasta tonight.
Ally only has 2 days of preschool this week, and then, on Sunday Daddy and Ally head to New York for round four of 3f8.
We would like to say a special thank you to Ally’s Mommy’s side of the family. Their generous gift help offset the cost of this surgery, as we don't have dental insurance. Thank you so much. Ally's teeth and our peace of mind are indebted to you until the Tooth Fairy comes (which someone told Ally brings you $50 a tooth....WHAT?)
Saturday, January 22, 2011
This is what I saw. Click this title for the pic. I've asked for permission to use it. I hope he lets me.
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
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
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.
Wednesday, January 19, 2011
Sunday, January 16, 2011
The Gandhi History Museum
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)
Saturday, January 15, 2011
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.
Thursday, January 13, 2011
Sunday, January 09, 2011
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
Friday, January 07, 2011
Thursday, January 06, 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.
Tuesday, January 04, 2011
Monday, January 03, 2011
Friday, December 31, 2010
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
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
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
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.
Sunday, December 26, 2010
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.
Saturday, December 25, 2010
Christmas Morning Pome
as we are with the earth
and part of her dirt
so as she turns
again
to light, steering into
spring and fecundity
we celebrate
as if she loved us
each, one to one
we love our own
parents, children
children, each other
and everyone, those
who have been let into
our hearts
and in joy and in relief
praise the coming of one more year
with love, and feasts
and gifts of love
how entirely human
and glad to be
we are in this dark
waiting, expecting and perceiving
new light
we fix bits of light
to green and growing things
fashion fruits and birds
and lay nuts and seeds and berries
among the branches
and sit, in the flickering dark
with our love
love of ourselves
and all others
for this sweet and
hopeful second of the year
blessed blessed blessed
jjl
Christmas Morning
2010
Friday, December 24, 2010
Wednesday, December 22, 2010
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!
Tuesday, December 21, 2010
Sunday, December 19, 2010
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!
Grandfather Frost
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.
Truth exposed
the look on a face
would the smile spread
or the horror?
All who saw would know.
To right a wrong
Headphones on.
Burning Lady Gaga.
Tens of thousands
Square by Square
the Emperor's clothes
described, martyrs
spread the truth.
At great risk
would the lord of lords
wander naked before
the lions fed.
By Phil Specht on Mar 3, 2011