It's been a while!
Posted 9:19 p.m. MST
Well, it's been a while huh? Tanner is doing well.
He was in the hospital a few weeks ago. He woke up on a monday morning at 4:30 with a fever, I instantly had the feeling "you need to take him to the E.R." So, I called my amazing parents and my mom came over to watch Austin and Noah, and my dad came with me and Tanner to the hospital. In the ER they did the usual things. Give him an IV, fluids, drew blood for labs and cultures, and started an antibiotic to be on the safe side. We were lucky to have Dr. Jackman there, who I just adore. He was the doc who told us Tanner had cancer back in Feb '06, and has had a place in my heart since then. He, and Tanner's liver doc, both felt uneasy about sending him home. So they admitted him as a precaution. The next morning, when Dr. Book came in to see Tanner she said "It's a good thing you're here!!!!" His blood cultures has grown out Streptococcus Pneumonae, which is what the prevnar/pneumococcal vaccine prevents against. It can become really life threatening really fast. Long story short, even though Tanner has been vaccinated, the chemo wiped out his immunities and he has to start his immunizations all over. He was in the hospital for a week, and came home with a PICC line to continue IV antibiotics.
He's doing much better now, thankfully.
Tomorrow he has a check up with Dr. Book (liver doc). Hopefully all will go well. I expect that they will.
I didn't post over thanksgiving, but was overwhelmed with my gratitude for my children, and so grateful for our liver donor and his/her family, who without, we would be missing a member of our family this year.
I love you all and thank you for caring about Tanner.
Sunday, November 30, 2008
Saturday, November 29, 2008
Friday, November 28, 2008
After 6 rounds of "regular" chemo, an almost 10 hour surgery, 2 rounds of super killer chemo, 2 stem cell transplants and 20 sessions of radiation, Ally is in remission.
Ally is now entering the "maintenance" phase of her treatment. She will be on one heavy duty medicine for 6 months, she will continue to take Bactrim and will have at least monthly visits to the NH hospital.
THANKSGIVING DAY, NOVEMBER 27, 2008 08:06 AM, EST
It has started to set in! We were not expecting results yesterday. We thought, with the holiday, the earliest we would hear would be next Tuesday or Wednesday.
It is awesome to be able to say "Ally is in remission!" Plus I can give my 3rd graders an extra spelling word next week!
This is by far our best Thanksgiving yet!
We are still not done with cancer treatment, she still has 6 months of medicine to get through, we are still talking about the central line, she is still in quarantine and she will have to be tested often to see if the cancer is coming back, but for now our baby (toddler) is CANCER FREE!
Here are some of the test results we got back:
(First some background info: chemo turns neuroblastoma to stone. Ally will always have these "stones" in her, but hopefully they will not come back to life.)
CT scan: still shows the cancer stones, but no new ones = good result
Bone Marrow: negative = good result
Hearing Test: in the normal limits, but a slight decrease from previous test = good for now!
Fluoroscopy/Ultrasound: these were tests for her kidneys. She has stage 1 reflux in one of her kidneys = another test in 2 years or so just to keep an eye on it (the oncologist made it seem like this is no big deal)
Echocardiogram: her heart is looking good = GREAT result!
MIBG: NO LIVING CANCER = BEST NEWS EVER!
Happy Thanksgiving! We are so thankful for all this good news and for all of you and all the support you have given us. We are not at the end, but a huge weight has been lifted, and it has not been as heavy because all of you have been helping us carry it. Thank you does not seem big enough for all of you who helped to save Ally's life (because all of your thoughts and prayers helped do that). What can you say to people who saved the most precious thing in the world?
Posted by puddle at 11/28/2008 08:13:00 am
Wednesday, November 26, 2008
|I can't go on. You must go on.|
Times when the pain is too great
and all you wish is for the light to blink out
Not to be asked to take one breath more
When all they have in store for you is pain
and more pain. When the very cells of your body
bleed into one another. Anguish will not vanish.
Steps forward are taken in invisible increments,
too small to measure. And we cannot go on.
And somewhere in the howling dark, one switch is switched
and then, somehow, another. And yet another. Till, finally, all the man-made
monsters can measure is nothing. There is not one cancer cell that has survived.
It is Thanksgiving's Eve, and Ally, almost two, has been pronounced cancer free.
Nothing ever has been or ever will be larger than this.
26 November 2008
Posted by puddle at 11/26/2008 11:59:00 pm
WEDNESDAY, NOVEMBER 26, 2008 04:18 PM, EST
JOY! JOY! JOY!
The test Ally took today came back:
There is NO living Neuroblastoma in Ally!
She kicked that tumor's butt!
Time to celebrate and give Thanks!!
Gee, and Ally's Grammie Sue hasn't even blown out her candles yet!
Tomorrow will be a very special Thanksgiving Birthday!!
If you like, come by and light some candles in celebration! :-)
Posted by puddle at 11/26/2008 07:07:00 am
Tuesday, November 25, 2008
TUESDAY, NOVEMBER 25, 2008 04:42 PM, EST
I am not really sure this actually happened today, but this is how I remembered the day going:
Ally sleeps until 7:00AM!!!! (late for her)
We play, nap and eat until noon, when we head for DHMC. Ally is quiet and happy in the back seat the whole way up.
1:30 We arrive for Ally's first appointment. They take us right in, do what they need to do (in about 15 minutes) and then tell us we can hang out in that room until our next appointment at 2:45 with ultrasound. They give ultrasound a call anyway. They tell us they can take us early! We get to ultrasound around 2:00. They are completely finished by 2:30 (15 minutes BEFORE we were even supposed to be there!). I tell them our next appointment is not until 3:30. She calls those people, they say, come on down! So, we head to her last appointment almost an hour early and they take us right in, service Ally with a radioactive injection and we are on our way, out of the hospital before her last appointment was supposed to begin!
Then, we get home to 245 cards from the Mill River community (a town in Vermont one of Daddy's cousins teaches in) (and yes I counted them!). We have not had time to look at all of them, but they are very colorful and all for ALLY!
Tomorrow Ally gets a one hour med infusion, an echocardiogram and an MIBG scan. Tomorrow is a day she will not be able to eat after 7AM. She will go under around 1:00 and should be awake about an hour later.
Posted by puddle at 11/25/2008 07:35:00 pm
Monday, November 24, 2008
Sunday, November 23, 2008
Saturday, November 22, 2008
Tuesday, November 18, 2008
. . . . . . . . . . . . . for Sarge
We share a sky. . . .
I woke this morning
A skiff of snow had frosted the whole wild world
and the stars were out
notes of bright laughter
dancing across the blue velvet ballgown
I could feel you coming home
18 November 2008
Posted by puddle at 11/18/2008 10:24:00 pm
TUESDAY, NOVEMBER 18, 2008 05:28 PM, EST
Here are some of the things that Ally's family has accomplished in the past 5 days:
Successfully canceled a credit card after someone used our number to buy a computer in California.
Mysteriously started a car after it would not turn over for 5 minutes.
Did some early Christmas shopping in the form of a new hot water heater.
One of us (Daddy) took an unexpected day off work to be at home for installation of hot water heater.
Took 2 ice cold head showers after new water heater was not hooked up properly. (So we could be semi-presentable at work today.)
Finally took a hot shower!
Forced our kid not to eat for 6 hours so she could have a bunch of tests done.
Is it possible for tomorrow to be normal?
Posted by puddle at 11/18/2008 08:22:00 pm
Monday, November 17, 2008
MONDAY, NOVEMBER 17, 2008 05:51 PM, EST
To start off: Ally did AWESOME today. She was allowed to eat until 8:00 this morning, and started asking for more food at 8:02. She NEVER cried for food though.
She had to go to the Ear, Nose and Throat doc. This lady looked in Ally's ears, and said she looked good. (Ally's oncologist did the exact same thing last Friday...there is at least $300 down the tube!)
Ally then had to go to "Pain Free" to be put under anesthesia for her CT scan, bone marrow biopsy and hearing test. We were scheduled to be there at 1:15. We showed up at 1:15 and they ushered us into a pediatric room because there were a lot of kids in the pain free area. We waited and waited and waited. About 2:00 they FINALLY came and got us and put Ally under. She did great for her tests. The only preliminary info we have right now is that higher pitched sounds (like s, th, ch, sh, etc.) dropped a bit, but are still in the normal range. They suspect these levels will drop even more. Stinker!
We are going to run her nightly fluids tonight (because she had such a strange eating and drinking day) but then we get to take a break!
Ally now gets 8 days in a row where she can eat whenever and whatever she wants!
That was our day. I'll let you know results when I get them! Thanks for all your caring words.
Posted by puddle at 11/17/2008 08:01:00 pm
Sunday, November 16, 2008
SUNDAY, NOVEMBER 16, 2008 08:50 PM, EST
Here is our crazy schedule for Monday:
5:30AM - wake up and pump as much yogurt and other fatty foods into Ally as we can for 30 minutes
6:00 AM - switch to toast with jelly and dry cereal
8:00AM - switch to clear liquids
9:30ish - head up to the hospital
11:00 - switch to yucky "prep drink"
11:30 - Ear, Nose and Throat Appointment
1:15 - Head to Pain Free
1:30 - CT scan, bone marrow biopsy and aspirate and possibly a hearing test
Sometime in the late afternoon - Ally wakes up, we feed her and feed her and feed her, then she takes a super huge and messy poop on the way home (thank you prep drink!).
We have a mysterious 2:30 appointment with Ear, Nose and Throat. That is what I think might be the hearing test they do on Ally when she is under anesthesia. I am not really sure about that though.
We will not have results for the CT scan right away. I will be sure to post results as soon as we get them!
Wish us luck!
Posted by puddle at 11/16/2008 09:18:00 pm
Saturday, November 15, 2008
Row true into the descending fog
the shore fades from view
but is still there
set course and row
into the gloom
Rest if you must, father,
in the front of the boat
a true course easier
one rowing alone than two.
It was you
who brought us to sight
of shore, near, in the fading light.
I'll take it from here.
and so I row
while my father sleeps
the sky will clear
with the dawn
the fog, dripping dew
~~ Phil Specht
Posted by puddle at 11/15/2008 04:03:00 pm
Friday, November 14, 2008
FRIDAY, NOVEMBER 14, 2008 02:49 PM, EST
RADIATION IS OVER!
Ally did great today! She was scheduled to begin radiation at 7:30 and they took her early again today! She got even more gifts today (she got a present yesterday too) from hospital staff. (They love her!) I even think some people are working to rearrange their schedules so they can see her on Monday too.
At the clinic today Ally weighed in at 19 pounds 2 ounces. We talked about her new med she needs to be on for 6 months. There are some crazy side effects (depression, psychosis, and thoughts of suicide) but those should NOT happen with Ally. However her skin will be very, very, very dry and her lips will be chapped and cracked. The medicine is actually for acne (why would anyone let their teenager take a med with those side effects is beyond me) but is shown to do good stuff for kids like Ally. CRAZY! The other obstacle to this med is it comes in a capsule form, so we have to warm it up, poke a hole in it and drain out the liquid, then give Ally the liquid. Wow, and we thought we were done with treatments. This will happen 3 times a day for 2 weeks, then 2 weeks off, for 6 months.
We also talked about Ally's central line. It looks like it is slipping out more and more each week, when we change her dressing. We are now hoping it will last for about another month. She has huge tests this coming Monday and then the Tuesday and Wednesday right before Thanksgiving. She starts that crazy medicine December 3rd and they will need to draw lots of blood on December 17th. Our hope is it will last till then. Then it will come out, which means surgery (and another day off work..sorry kids!)
Well, those were the highlights of the day. Monday is the stinky day of mostly no eating. GRRRRRR! I'll let you all know how that goes.
Posted by puddle at 11/14/2008 03:20:00 pm
Thursday, November 13, 2008
Wednesday, November 12, 2008
Tuesday, November 11, 2008
TUESDAY, NOVEMBER 11, 2008 12:45 PM, EST
Things went well at the hospital today. Ally was scheduled to "go under" at 7:30 and was actually under by 7:18. I would like to say this makes up for those times they were 5-10 minutes late, but I like to hold a grudge! (Read that last sentence with a snarky smile.) ;-)
Here are the dates of Ally's 3 days of scans and tests.
11/12 - Session 18
11/13 - Session 19
11/14 - LAST Session and Clinic Appointment
11/17 - Ear, Nose and Throat Appointment and a CT scan.
11/25 - Floroscopy and ultrasound, plus an MIBG injection
11/26 - Echo Cardiogram and MIBG scan
The meaning of these scans and tests (all of which she has had before) are starting to weigh on me. They are going to tell us if the 6 rounds of chemo that made Ally vomit, the 9+ hour surgery to remove tumor, the double stem cell transplant and 20 sessions of radiation worked. It is a lot to worry about. She sure has been through a lot since February.
As we approach the end of radiation (ONLY 3 LEFT!) we are going to have to keep Ally in our sights at all times, because the nurses that see her every day love her so much, they might just take her home!
Enjoy your day off (if you have it off today) and hug a veteran!
Posted by puddle at 11/11/2008 08:26:00 pm
Obama Wants Cleaner Cars
Already one of the differences between the Obama administration and the Bush administration is coming into focus. The $700 billion bailout bill Bush wanted and got just shovels money at the banks, without getting much in return. Obama has now come out in favor of aiding the struggling auto industry--but contingent on their making cleaner, more energy-efficient cars. Republicans believe in giving large amounts of money to companies that have made bad business decisions in the past, but also believe that attaching some strings to this money would be socialism. Democrats don't have a problem with this.
Posted by puddle at 11/11/2008 03:55:00 pm
And in those days, it came to be that what goes around, comes around. Not to mention that payback is a bitch. . . .
the president is extremely unpopular: his approval rating now stands at 20 percent, the lowest ever recorded for a president.
Posted by puddle at 11/11/2008 02:52:00 pm
Monday, November 10, 2008
MONDAY, NOVEMBER 10, 2008 05:59 PM, EST
We are still waiting to hear about blood tests for Ally today. (It looks like we are not going to hear anything tonight...we are hoping that is a good thing, and that she does not need blood tomorrow.)
Tomorrow Mommy, Daddy and Ally are traveling to DHMC. [the NH hospital] It will be nice to have 2 adults in the car.
Ally has been talkative and happy. She only took an hour nap today (because the cat woke her up), so we are hoping she can make it to her normal bedtime tonight.
The radiation seems to be showing it's ugly head. Ally has noticeably dropped her eating quantity and yesterday she threw up and seemed a little out of it after her nap. Only 4 sessions left!
Posted by puddle at 11/10/2008 10:35:00 pm
Democracy is two wolves and a lamb voting on what to have for lunch. Liberty is a well-armed lamb contesting the vote.
-- Benjamin Franklin, 1759
My vote is my gun. . . .
Posted by puddle at 11/10/2008 02:12:00 pm
Sunday, November 09, 2008
Saturday, November 08, 2008
FRIDAY, NOVEMBER 07, 2008 08:13 PM, EST
Today Ally got radiation at 7:30 AM and left the hospital at 3:00 PM!
Yesterday they took a blood sample and Ally's counts had dropped, dropped, dropped! She received some red blood cells today (those take about 3 hours) and was sent home with a lot of literature about her upcoming new meds. Her daddy and I still have to look through that to see what it is all about. There is talk about GCSF again (which is an injection in her leg to stimulate white blood cells); if this happens it won't start until after radiation.
I was told Ally was super good at the hospital today. She gets her own, private room in the cancer clinic (mostly because she is still in quarantine) and she has her own bucket of toys, which mysteriously keeps getting more and more toys!
We are looking forward to an uneventful weekend and feeding her all day, whenever she wants to eat!
Posted by puddle at 11/08/2008 05:13:00 am
Friday, November 07, 2008
THURSDAY, NOVEMBER 06, 2008 04:40 PM, EST
Today was a frustrating day. We got some information about Ally's upcoming scans. Of course they are scheduled throughout a day (taking up a whole day of work and being stuck at the hospital for the whole day) and all over the hospital that is full of germs Ally should NOT be exposed to. She has 3 days of appointments from the 17th to the 26th of November. Two of these days require her to be put under, which means no eating. The "early" one is at 12:15 and the other day is 1:15. That is many many many hours of us tricking Ally into not eating or crying because she is starving. We are frustrated and angry because these are the last steps, but it always seems like there is one more thing to deal with. I reached my breaking point today and the poor lady on the other side of the phone took the brunt of it, even though there is nothing she can do about it. Sorry Tess!
On the bright side, Obama won!
Posted by puddle at 11/07/2008 12:37:00 am
Thursday, November 06, 2008
Tuesday, November 04, 2008
Monday, November 03, 2008
MONDAY, NOVEMBER 03, 2008 06:46 PM, EST
Ally did well at the hospital today. They were 15 minutes late, but that was because there was an emergency in the PICU. Ally spent close to a month in the PICU, so I forgave and they found a replacement as soon as they could.
She seems very tired this evening, not sure if it is because of radiation or the time change.
Ally has some peach fuzz growing on her head! It is coming in very dark, like when she was born and it was jet black. She is going to look silly with fat on her body and hair on her head! We can't wait!
I have super busy work this week (conferences with parents on Wednesday night), so unless something spectacular happens Tuesday or Wednesday look for an update on Thursday or Friday.
Posted by puddle at 11/03/2008 07:18:00 pm
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin' for
It’s gonna be a bright (bright), bright (bright)
Look all around, there’s nothin' but blue skies
Look straight ahead, nothin' but blue skies
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Posted by puddle at 11/03/2008 04:56:00 am
Sunday, November 02, 2008
Saturday, November 01, 2008
According to wooly worm lore, woolies predict the winter's weather. Every wooly worm I've ever seen, before today, has a black front end and back end, with a band of rust in the middle.The size of the bands differ from year to year. The black is cold weather, the rust -- warmer weather. This is the only picture I was able to find of a wooly worm resembling the one I saw today. It was taken in Kentucky on October 24, 2004. Which would predict an extra warm winter. . . .
Thanks to the miracles of google, I found this:
WINTER SEASON (December 2004 – February 2005)
Synopsis: The winter of 2004-2005 experienced warmer than normal temperatures across the entire quad state. This in turn led to very few frozen precipitation events. However, on December 22, 2004 the largest snow storm on record for many parts of the quad state dumped one to two feet of snow. Southeast Illinois and southwest Indiana saw the brunt of the storm, with 18 inch and greater totals widespread across that area. Behind this system, the snow-covered ground acted as a freezer, and morning low temperatures dropped well into the subzero category. A rapid warm-up then occurred which persisted into the new year.
Record warm temperatures occurred on the first few days of 2005. This would just be the start to the mild conditions. During the months of January and February, Paducah saw twenty-two days with double digit warm departures from normal. These above normal temperatures eventually sparked a minor round of severe weather on January 13th, which included an F1 tornado in Pulaski County, IL. Unlike the major snowstorm which started winter, snow would be scarce during the remainder of the season. In fact, some communities did not log a trace through the last two winter months.
Ya. I know it's not scientific. . . . But a girl can dream, can't she?
Posted by puddle at 11/01/2008 05:36:00 pm