Happy Birthday Amanda!

This is shaping up to be Amanda’s best birthday yet! Not hard considering her actual day of birth, what with not being able to breathe, eat or even open her eyes yet. Her first birthday was very joyful and a bit relieving (for us) considering the year we had been through and we patted ourselves on the back a bit that she had made it to her first birthday. We did have to stagger our celebration between three different parties as; we could not fit everyone in our house all at once. However, I doubt she understood the celebrations, though she did learn that she LOVES cupcakes. Then last year even with the new sled, giant teddy bear and Elmo chair the joy just did not sink in through the pink eye and pneumonia she had contracted…on her birthday.

Today should be better. We have been talking up birthdays in general and she knows she is turning 3! Also, she is between weeks of chemo so her numbers are up and she is actually feeling well. The timing worked out perfectly.

I said to her last night, "Yay Birthday"!

To which she replied, "Yay Birthday Cake"!

*shrug* She is a kid. She knows what she wants and says what she thinks. So, today we shall celebrate our dear girl making it through another harrowing year with cupcakes and presents and TONS of hugs and kisses. We will wish her health and happiness and keep our fingers crossed for a good uneventful year, and many more.

Original Birth Day 2-17-06

First Birthday - Handful of Cupcake

Second Birthday - Sick

Third Birthday

Meow dressed up for the occassion.

Super Panda

Amanda's Cousin Isaak is eight months older than she is. He calls her
"Panda". I have always loved this as I have called her Manda Panda since
before she was born. Seeing how well she has done through the NICU and now
through her cancer treatments we have started calling her Super Panda. It
seems to fit really. (I envision a sort of cartoon like the recent Kung Fu
Panda with a mask and super-hero cape.) She seems to always come out with
the best case scenario. Her heart defect healed itself, her eye doctor says
if you didn't know she was a preemie you wouldn't be able to tell by looking
at her eyes (her glasses are the result of a congenital birth defect not
related to her prematurity). She has passed every hearing screening, even
after they gave her chemo which could result in hearing loss. Her
vocabulary, while slow to start, has picked up speed at a surprising rate.
She is smart and funny and...fearless. All the makings of a good super-hero.
She acknowledged this herself the other day while getting settled into her
car seat. She called herself Super Manda! (Grammy believes this stemmed from
her recent viewing of a Sesame Street video in which SUPE-R Grover played a
large part.)

She proved herself invincible once again on Sunday when we took her to
CenterPointe Mall to play in their kiddie play area. She decided to LEAP
off the top of the slide instead of simply sliding down. HOLY CRAP!!! I
saw her poised at the top, knees bent, arms back, looking like a skier on
the slopes. I yelled her name and started towards her JUST as she took off.
(Though she has passed all of her hearing screenings, LISTENING is a skill
she has yet to master.) Luckily, she landed on her butt about half-way down
the slide and slid the rest of the way down. I scooped her up at the
bottom, still terrified, but she was fine. Another parent said she was glad
her daughter had not seen it, as she would probably try to follow suit. Note
to self: Stand next to the slide!

As impressed as I am with our girl, I wonder how many times she can tempt
fate! Even Superman needed help from time to time when the kryptonite got
too close.

Mere :0)

Please visit our website for the March of Dimes, March for Babies.
www.marchforbabies.org/AmandaRileySoddy

Almost Normal

This past week was out patient chemo for Amanda. These are long tiring weeks for her (and us). Usually by Friday we are all pulling our hair out. This time was different. She was definitely more tired than normal but we didn't have the tantrums or the huge battles and tantrums that we have come to associate with the out patient weeks. Yay!
Also, our girl seems to have developed a new skill. She is now "reading" her books to us! This is huge step in early reading and associating words with the pictures, etc. She should be ready for MIT any day now. :-)
She also decided to share her cold with me. Grammy said she might have it to. This tells me we probably all picked it up at the clinic last week, or Grammy and I got it from her despite our constant hand washing after wiping Manda's nose all last week. I am sitting in the waiting room at the doctor's office now (gotta love smartphones) hoping to avoid yet another case of labyrinthitis (ear pressure induced vertigo) which seems to be my trend the last few years. Amanda will be seen in the clinic tomorrow, unless she develops a fever before then. So far so good on that front. As long as we do not run out of tissues we will be just fine.
Other than that we are just keeping up with everyday life. Looking forward to Manda's birthday next week. How (and when) did she get to be 3 ?!?!

Mere :0)

I See The Light

Amanda had her CT scan and BAER hearing test on Tuesday. All went very
well. The worst part is when she is waking up from the sedation and cannot
yet hold up her head but wants to get up and walk around! Floppy girl like
a rag doll doesn't understand why we are being mean and holding her down.

You may remember that our oncologist planned to take the AFP of 4.6 (normal)
and the findings of the CT scan (completely clear, no trace of cancer in
either the lungs or the liver) and discuss her case at the Tumor Board this
morning. She said there was a definite sense of optimism about Amanda, both
in how quickly the cancer responded to treatment and how well she has been
able to withstand the treatments they have given her.

Due to the fact that there were still some live cells left at the time of
the surgical resection of the tumor they have decided to do two more rounds
of outpatient chemo. This means we will no longer be checking in for the
4-day IV drips (YAY!) and it also means that we should be finished with
chemo somewhere around the last week of February. "There is a light at the
end of the tunnel," the doctor said on the phone today.

She can tell that we are all getting weary of this journey to health but we
all know that we would do whatever it takes to get Amanda well again.

Once we are finished with the chemo they want to see her every three months
for scans and blood work to ensure the cancer isn't coming back. We will do
this for the next two years since, if it were to come back, these next two
years would be the most likely time.

This is good news. This is optimistic news. This is what we have been
waiting to hear since the last week of June. We are almost there...

Mere :0)

www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Moving Forward

Amanda's numbers were up enough at the end of last week that we decided to
go ahead with her outpatient chemo this week. They drew blood to check her
AFP again and we had a nice talk with her primary oncologist. We often see
her partners more than we see her but she is the one making all of the final
decisions about the course of Manda's treatment so it is nice to be able to
ask a question and get an answer rather then waiting for someone to check
with her and get back to us.

So here is what we know. The AFP (the cancer marker in the blood) is now
4.6 which is fabulous news. She said that number could fluctuate up and
down and even if it goes back up over 8 again it does not necessarily mean
something bad. They will just watch it. She said in young children that
number goes up and down but in adults it does not so don't panic if it goes
up. GOOD TO KNOW!!!! I am SO glad they told us this. The 4.6 is a smidge
higher than the 4.3 which signaled remission but close enough and with the
knowledge that it could have been much higher and still been Ok, we are very
happy indeed.

We also know that Amanda has a CT Scan and BAER hearing test scheduled on
the 20th. They are looking for any possible teeny tiny spec of possible
tumor in the lungs. They will have the pediatric radiologist scour the films
looking for ANY trace at all. The metastases in the lungs is what we are
most concerned about at this time since they went away with chemo and we are
hoping they stay away now. If the cancer were to recur, it would most
likely show up there first. She also said that if the cancer were to come
back it would probably show itself within the next two years. Not that it
is impossible for it to come back later than that, but more likely sooner
rather than later.

Armed with the current AFP and the results of her scans from next Tuesday
she will present Manda's case at the Tumor Board and get everyone else's
opinions on where we should go from here. Her thoughts at the moment are
that we should NOT do any more inpatient chemo. (YAYAYAYAYAYAYAYAYAYAYAY!)
This is due to the fact that the two drugs she gets inpatient are far more
toxic to the body and can cause significant hearing (hence all the testing)
and heart function damage (not good) even later on in life (she will need
testing throughout her life to watch for decreased function in both of these
areas). SO, we may still do two or three more treatments of outpatient
chemo like she is getting this week which are still very effective and do
not cause such serious side effects. She will give us more details after the
meeting of the Tumor Board. This is FINE with me. I would rather have a
room full of experts making recommendations and using their collective
knowledge. And, once again, Thank Goodness we live where we do and have
access to such amazing care and technology so close to home!!!

Eventually we will only need to go every three months for scans and blood
work to reassure ourselves that she is still cancer free. Someday we should
be able to drive through downtown without Manda calling out, "Oh, WE GO
CLINIC!"

Mere :0)

www.mandameow.blogspot.com

Good Stuff

We are home!
Her numbers are up, she is free from infection and she asked for chocolate milk in the car on the way home. Cleaning, laundry and a nap will get us ready to return to life as normal tomorrow.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy

Rumors

According to our nurse, who's name is Mandy, we should be going home between 9 and 10 this morning. This will allow us time to talk to the doctor, have breakfast and get home and settled in for Amanda's nap this afternoon! We'll see how it goes.

Mere :0)
www.mandameow.blogspot.com
www.marchforbabies.org/AmandaRileySoddy