Monday, January 30, 2012 6:58 PM, EST
On February 19, 2009 Ally's prognosis changed. We had just come off 3 months of remission and were feeling good. Her scan that day showed the tumor was back. It was heartbreaking. The very next day we met with her oncologist and made a plan. The plan really did not include Ally having a 5th birthday...
I am so glad that plan was not the final outcome. We had the wonderful opportunity to seek treatment and surgery in NYC; with the blessing of our home hospital (which I am told is not common). We feel so lucky that we only need to travel to New York to get some of the best cancer treatment for Neuroblastoma in the world. Even though the road is a bit bumpy down there, Ally celebrated her 5th birthday today, so who cares about a few bumps in the road? She is worth every tear that has been shed, every long trip to a hospital, and every doctor's appointment she has required. She is such a good girl. She is (almost) always well behaved. She always does what the doctors say. She always has a smile on her face. She is the bravest person I know.
So, here is to Ally, who was determined to have a 5th birthday, no matter what that stupid tumor thought. And, here is to Ally having so many more birthdays.
She is the light of our lives and we feel so lucky to be her parents, we are so happy she picked us!
Happy Birthday Ally...and many more to come!!!
Monday, January 30, 2012
Monday, January 30, 2012 6:58 PM, EST
Sunday, January 29, 2012
Saturday, January 28, 2012
Friday, January 27, 2012
Posted by puddle at 1/27/2012 07:18:00 pm
Posted by puddle at 1/27/2012 11:58:00 am
Thursday, January 26, 2012
Wednesday, January 25, 2012
Tuesday, January 24, 2012
Monday, January 23, 2012
--- In firstname.lastname@example.org, K wrote:
I'm with you here - salad without lettuce and sandwich without bread! I get very odd looks also!
K [. . .]
K: Too funny! Years ago, I realized I was (and am) basically allergic to carbohydrates, and became an Atkins girl. I've been asking for bacon cheeseburgers without a bun in restaurants for more than thirty years, lol! Before that, I realized I'm not really a drinker (I did and do still occasionally, but somehow would rather spend my calories elsewhere unless I *want* to get drunk, and never needed to more than once or twice a year), so used to get a cup of coffee from the kitchen just to have something in my hand at a cocktail party (otherwise helperbees bug you to death with, "Can I get you something?" -- Prolly, a glass of ginger ale would have worked as well). Guess what I'm saying is that for most of my adult life I've been ready, willing and able to walk my own path foodwise and accept that it made me "odd." Perhaps the difference is that *that* was my choice; the food "rationing" with Achalasia is not, and I find myself getting pretty pissy at times about the additional changes I've had to make because of it.
Irony, is that these past six months in trying to adjust to it, the lo-carb way of life I adapted to so many years ago, and so well (I can make low carb waffles!) has fallen through that giant hole of starvation avoidance! Virtually everything I CAN eat now is close to total carb! And it shows (thank goodness, for the time being), in the four weeks since the Heller, I've gained five pounds! I need to stop now. Now! I didn't ask for the weight loss, but it has been very good for my walking, breathing, hip and knee joints, and I'd HATE to lose that. So last night, was trying to figure out how to get back to low carb. . . . I can pretty much keep my odd little salads, because there's not much carb in lettuce. But a good many things that were/are staples, I'm currently unable to eat -- bacon cheeseburgers (with or without buns), roast beef, steak, roast pork, pork chops, tuna fish, kippered herring, I can't have, while what I CAN eat: potatoes, sweet potatoes, crackers of any kind, toast, ice cream are death to a low carb life. (Well not exactly true, I've learned how to make low carb crackers, biscuits, and a kind of flat bread)(but no more store boughten ones, lol!) I feel like one of those lab rats that has to learn a new maze to run perfectly to get fed. ACK!!
Food habits tend to be pretty rigid for the human race: most of our foreign food restaurants in this country were started by immigrants who needed food to taste *right* to them, and were intended to provide a place to eat for other immigrants. We're a bit luckier: we've adopted a lot of "foreign" cuisine as our own (at least on occasion: Chinese, Sushi, Italian, Mexican, Greek, Middle Eastern, even African. I guess I'll have to thank my mother, may she rest peacefully, for pushing us to try new things. We certainly ate from a much broader spectrum of food and food styles than anyone I knew when I was growing up in the forties and fifties in the Inter-Mountain West. And no fussing tolerated: with nine kids, no special orders available. Artichokes and avocados, mung bean thread, Cuttlefish, tongue, calf brains. . . . regular little gourmands we were, grin. But all in all it prolly makes it easier for me to adapt my eating habits than most.
I recall reading a few years back that a mid-Western/Heartland nursing home, in an effort to provide healthier food for its residents hired a really good chef. . . . And the residents went on strike!! They WANTED meatloaf and mashed potatoes with greasy gravy and mac and cheese, and grilled cheese sammiches, the hell with pâté de foie gras, and beef stroganoff!
Live long and prosper kiddles!
Julie in the Wilds of Wonderful West Virginia!
Posted by puddle at 1/23/2012 09:28:00 am
Sunday, January 22, 2012
Friday, January 20, 2012
Sunday, January 15, 2012
Thank you, Martin.
So, today is Martin's birthday. And I'm glad this country acknowledges it.
But his birthday always brings to mind so clearly to me the first week that he wasn't. It was beautiful weather in D.C. that week. There was a Forsythia in bloom at my back door, and I spent the whole week digging it out, to replace it with a Mock Orange. I had a radio on the porch listening to the news of the riots as I sweated, disentangling the Forsythia's roots from around the construction junk the builders had buried next to the house.
My neighbor across the street with her doors locked was calling frequently, convinced that the rioters were headed our way. (Right, all the women in the neighborhood had to drive to the bus stop to pick up their maids ~~ was she expecting them to take taxis out from DeeCee just to get our little chicken sh!t ghetto?)
As I sweated, dug and pulled, and the sky was blue and beautiful, and 7th street burned and burned, I recall feeling so hopeful. At last they were angry, and standing up!
When I first came East, I worked in the personnel records dept of Hot Shoppes/Marriott. We had thousands of employees in D.C. mostly cooks, busboys, dishwashers. They bought furniture on credit from the stores on 7th Street. Whole house suites. The terms were very easy, the furniture crappy. But the monthly payments were possible even on a busboy's salary. The interest, outrageous, but at least you had a couch to sit on, a table to eat on, and a bed to sleep on -- for a year or two, until it fell apart. Then generally, they stopped paying. And went down the street to buy another set from another store. The owners didn't much care, D.C. had a really good garnishee law. The buyers were sometimes paying for two or three deceased suites as well as the currently useable one. Every time I'd filed another garnisheeing notice, I'd felt outraged. They were paying double or triple what the junk was worth in the first place. And yet I could see no way out for them, then. No one else would give them credit. They were doing what they could. But if I were angry, just standing helplessly by, how much more angry must they be?
And now, 7th Street was being burned! One could see the smoke from the burning city even from Maryland.
I pulled several bushels of construction junk from that hole, and dragged it to the curb. I planted the Mock Orange with much new dirt, and manure, and hope. And it flourished. And I always think of that week as the beginning, though I know it began earlier, with a man who would not have approved of the riots, but who had given the heart and the hope into the making of them and heart and hope did not end when he did. . . .
Thank you Martin.
This is a repost of a blog I posted on the Howard Dean blog in 2005
Posted by puddle at 1/15/2012 12:30:00 am
Saturday, January 14, 2012
Friday, January 13, 2012
Thursday, January 12, 2012
Yup. No dang guarantees. But then there never are any, really, for all we act like there are, grin. We marry in the face of terrible odds, believing that *our* love will make it. . . . And miracle of miracles, it often does. We have children, and hope and pray they'll be fine at birth, and mostly they are. We build houses and pour our hearts into making them homes, praying all the while that hurricanes, typhoons and earthquakes will pass us by, and they do for the most part. Living seems to be more of an art than a science. . . .
But for the fact-loving: N. dug these up a while ago, and says it so well, I'll let him speak for himself: http://health.groups.yahoo.com/group/achalasia/message/59703
Needless to say if the odds on a lottery were anywhere as near as good, I'd be taking out second mortgage on my farm to buy tickets!
And here's a scrap of poetry that always works as HeartsEase for me:
“Failing to fetch me at first, keep encouraged. Missing me one place, search another. I stop somewhere waiting for you.”
― Walt Whitman
Julie, West Virginia!
Posted by puddle at 1/12/2012 09:35:00 pm
Wednesday, January 11, 2012
Tuesday, January 10, 2012
Tuesday, January 10, 2012 8:40 AM, EST
Ally's bone marrow samples went well yesterday. She has had them so often that the amount of scar tissue at the sites has been a problem the last few times. Yesterday there was no problem!
The meeting with the Endocrinologist was interesting. Our plan is to keep track of her blood sugar for a while and see what that data gets us.
As soon as I know about bone marrow results I will let you know.
Posted by puddle at 1/10/2012 06:29:00 pm
Saturday, January 07, 2012
Eating is so much more than nourishment in this culture (and every culture, as far as I'm able to determine). I think historically over thousands of years it's always been a huge uncertainty whether or not there will ever be a *next* meal, that we've developed our major celebratory behavior around food. To be ousted from that takes a bigger toll on the soul than one might have expected. . . . To rejoin the fellowship, a greater gift than one knew. . . .
Posted by puddle at 1/07/2012 02:18:00 pm
Friday, January 06, 2012
Friday, January 6, 2012 6:55 PM, EST
Ally's CT and MIBG are clear! We are still scheduled to pull bone marrows on Monday. We should have those results sometime next week.
On top of clear scans we can also celebrate how awesome Ally behaved. Yesterday was her CT scan. If you have never had one, google it, so you can see the huge machine Ally goes into. It is loud as well. She was very calm, and held her breath when they told her too. The nurse said the images were great, and that Ally did a fantastic job. We were under the impression that today's scan would be about 45 minutes to an hour, as that is how long they tell us it takes when she is under sedation. In actuality it was two, 5 minute scans. Even with the shorter time, we are still very proud of Ally, for laying so still. She stayed very still and the images were clear. She still had to do the day of no eating, just in case she freaked out and needed anesthesia. She didn't need it, didn't complain about being hungry, and got a nice Olive Garden reward! She is our rock-star. What a great way to begin 2012! Thanks for all of your thoughts and prayers these past two days, keep them coming for clear bone marrows!
Posted by puddle at 1/06/2012 09:28:00 pm
Wednesday, January 04, 2012
Wednesday, January 4, 2012 10:31 AM, EST
Ally is HAMA positive. We will draw blood again in a month.
There has also been another change in her schedule. Ally can't have bone marrows pulled on Friday, because they need to be shipped overnight to MSKCC. So, Ally will do the MIBG scan awake (45-60 minutes) on Friday and we will head up to the hospital early and have bone marrows pulled at 9:30 or 10:30 on Monday, before her other appointment. Tomorrow her CT schedule will remain the same.
Posted by puddle at 1/04/2012 07:19:00 pm
Monday, January 02, 2012
Monday, January 2, 2012 4:52 PM, EST
Ally's scans have been changed to Thursday and Friday of this week. With today being a holiday, nuclear medicine could not get Ally's injection for tomorrow, so a last minute change was made. Ally will have her CT scan on Thursday, followed by her MIBG injection. On Friday Ally will have her MIBG scan and Bone Marrows. The original plan was to try the MIBG awake, but through good scheduling Ally can be sedated (it is a 45-60 minute scan where she needs to be still).
We will find out results by Monday. Also on Monday we are headed back up to DHMC for an endocrinologist appointment.
Oh yeah, on Wednesday we will get HAMA results too!
Please keep Ally in your thoughts this week.
Posted by puddle at 1/02/2012 07:07:00 pm
Sunday, January 01, 2012
Going to be a sweet warm first day. And Firstday. Had this wonderful dinner planned for last night, but the timing was off: I was too full already, at the wrong place in the meds cycle (you're not wanting to take fast acting pain meds on a full tummy), so had cheese and crackers instead (understand, cheese and crackers is a REAL treat!). So instead, rescheduled, and am having it for breakfast:
Chilled pate of turkey with seasoned salt and pepper
Candied yams, hot
Cheesy garlicky hot buttered spicy smashed potatoes
Cold cramberry sauce
What a lovely way to usher in the Year of Good Eating. . . .
Life's looking up.
Posted by puddle at 1/01/2012 07:50:00 am