Wednesday, December 31, 2008
We are watching her temp. Anything above 101.5F and we will be ringing in 2009 in the hospital!
Tuesday, December 23, 2008
However, we are not done yet. The fact that she had metastatic spots in her lungs at diagnosis means she is at high risk for the cancer to come back. In order to avoid this we will continue the chemo through the month of February. She handles the chemo very well and has not had any major side effects from the chemo yet (no hearing loss or damage to heart tissue, etc.) so it makes sense to keep going. We can't guarantee it won't come back, it might, but we are throwing the big guns at her now in hopes to avoid a recurrence. (Sorry Flicka, we still have to give her shots, for a little while longer at least.)
We are scheduled to get out of the hospital tomorrow in time to celebrate Christmas. We are looking forward to regaining health in the New Year and hope that by summer we will simply be going in to the clinic for blood work once in a while instead of twice a week.
Please note the new addition on the left of the blog page. We are planning on walking in the March for Babies again this year. Some might think that we would change our focus now from Preemie Prevention to Cancer but you see, it is all related! Hepatoblastoma is a rare cancer but there is a higher percentage of preemies who get it than the rest of the population. Is it due to the premature liver cells? Is it due to the oxygen that is given in the NICU? More needs to be researched about this particular topic. Would Amanda have had cancer at all had she been born full-term? We will never know. BUT, we can help find the answers to those questions so that maybe in the future other families can be spared what we have gone through in the past 2-1/2 years.
Thank you all for your continued support. We can see the light at the end of the tunnel but we are not out in the clear just yet. Rest assured that Amanda remains happy, energetic and too smart for MY own good!
Monday, December 22, 2008
Friday, December 19, 2008
Tuesday, December 16, 2008
A couple of days ago Amanda rediscovered the stickers she had placed on her
bedroom door, several stars of different colors. She noticed these late at
night as I was changing her diaper in an attempt to get her to
FINALLY.go.to.sleep.already! I told her the rhyme of Star light, star
bright... then I asked her if she could wish for anything in the world, what
she would wish for. Her reply, "Fruit bar"! (Her second favorite snack. The
first favorite being ABC pretzels with goldfish crackers and M&Ms mixed in.)
Hmm. We'll have to work on the wishing thing.
Sitting in a restaurant last night we heard the wait staff do their own
version of a birthday song for someone sitting at a nearby table. The song
included a leader and the group who answered and lots of hand clapping. At
the end when everyone else in the restaurant thought they could go back to
dining in peace, Manda applauded and shouted at the top of her lungs, "Good
Song"! She enjoyed it again when they did it not 20-minutes later for
another table the next row over. Daddy suggested we could take her there
for her birthday so they could sing to her. I am thinking not.
She had another BAER hearing test yesterday and passed with flying colors!
Yay! She had an echocardiogram which I have not hear back on yet. Last
time she was above normal function so I am not too worried. They also drew
blood for another AFP. This is the cancer marker we have been waiting to
drop to 8 or below. This one takes time to process so I knew better than to
ask yesterday. I called this afternoon... 4.3!!!!!!! I am relieved,
speechless, humbled, grateful and scared all at once. We will continue with
the chemo in hopes that the cancer stays away but we are nearing the end of
the aggressive treatment phase. We are headed back inpatient on Friday and
will get out Christmas Eve. We have already gotten the best Christmas gift
we could ask for!
A Very Merry Christmas to you all!
Monday, December 8, 2008
things that made me laugh (inside, not out loud as so not to dampen her
On the way to drop off toys for the Toys-For-Tots we got Manda to say things
like Ho-Ho-Ho and Merry Christmas! This was fun and cute until after making
our donation I started to drive away and she yelled out, "Bye-Bye
Singing is her favorite new hobby and what better song than the ABCs? Well,
imagine our surprise when she belted out, "...L,M,YELLOW-PEE..." Yeah, we'll
have to work on that.
Watching the Lions game on Sunday she was shocked, and not because the Lions
were actually ahead for a little while. No, she exclaimed, "Oh! They fell
down!" Then, upon watching the next play, "Oh! They fell down again!!!" I
told her they would be falling down a lot.
Last (though it actually happened first), but not least was one that brought
tears to my eyes. She had been asleep for a couple of hours on Friday night
when she woke up crying. She whimpered a bit and then whined, "No pokes",
in the saddest voice you have ever heard. Usually we yell, "Yay! No Pokes!"
in a cheer. This was a plea. Our poor girl has been through so much in her
very short life. I am hoping in the next month or so they will finally use
the R word. (No, not recession.) REMISSION.
Friday, December 5, 2008
Tomorrow we resume the Pre-Christmas craziness.
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