March for Babies

Friday, January 23, 2009

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)

Tuesday, January 13, 2009

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

Mere :0)

Monday, January 5, 2009

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)


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)

Sunday, January 4, 2009

Not So Much Home

8-oz over the course of the entire day was not enough to break us out of this joint. We are looking at release tomorrow if we pinky-swear we can get her to drink at home. They have stopped the antibiotics and morphine so she is on her own and doing great, except for the cabin fever and reluctance to drink. I firmly believe that it is more a power struggle than a physical problem so it should fix itself once we are home. (Hope I am right!)

Mere :0)


They will turn off her IV fluids and give her another transfusion of red blood cells. IF she starts drinking on her own we can go home this afternoon.
The ball is in her court. The not-yet 3-year-old is in charge.

Mere :0)

Saturday, January 3, 2009


Her temp is normal. Her ANC is up to 804. This is still below the safety zone of 1000, but does not require hospitalization. The jump from 107 to 804 in one day qualifies as rising rapidly and so far her cultures are still negative for bacterial infection. This is all fabulous news! So, we just need her to prove capable of eating and drinking on her own by tomorrow so we can go home! She sat on my lap this afternoon and munched on some banana and chips of all things! She also ate some M&Ms instead of just letting them disolve in her mouth and drool out the chocolate. Eating is good but drinking is necessary and she is still turning down all offered liquids. They did back down her IV fluids hoping to help her feel thirsty.
The final clue that she is feeling better is the fact that her display of frustration, the whining and wimpering (a sound Daddy described as "like a mouse crying") has changed to full out bucking-bronco anger. Mommy has been beat up more than once today trying to prevent her from hurting herself or the IV tubes.
Fingers crossed for a trip home tomorrow.

Mere :0)

Friday, January 2, 2009

Friday Night

So her temperature is down again. She needs to keep it down and show her numbers are rising "rapidly" before she can go home. She has sores in her mouth and is refusing to eat or drink. She won't even swallow her own saliva, instead letting it build up and drool out of her lips. They are giving her a low dose of morphine to fight the pain hoping she'll eat something. She did munch a few Fruit Loops tonight so hopefully they are on the right track.
We are settling in for the weekend and hope to go home sometime on monday. That of course is dependent on her temp staying down and her blood counts going up! Meanwhile, she will continue to whine, cry and throw things in her angry frustration. We will attempt to hide our own frustrations from her.

Mere :0)

I Told Her So

The nurse came in with Tylenol. Manda *freaked* out! I asked what our other options are and she mentioned Tylenol is also available in suppository form. I am left wondering how there isn't an IV fever reducing med. Her fever is going up again. Not good.

Mere :0)


Her temp is back up. They just drew new blood work including a new culture. Start the clock over for another 48-hours. They asked if she would take Tylenol, so at least now we can start to treat the fever. However, as oral meds require her cooperation, I told the nurse, "Good luck".

Mere :0)

Thursday, January 1, 2009

So Here We Are

Her temp has been down today but is now climbing up again. Not good.
Yesterday we were all concerned because her ANC (Absolute Neutrophil Count) was 110.  This is concerning as anything below 1000 signicicantly reduces her ability to fight off infection.  This morning we found out that the 110 was incorrect.  Her number yesterday was actually 38. Yes, that is right, 38.  Today's number was 0.  That would be Z-E-R-O.  Nowhere to go but up from her, huh?
Her level of platelets also dropped from 70,000 down to 26,000 so she is getting a transfusion of those as I type and when that is finished she'll get a blood transfusion to raise her other counts.
She has refused to nap today though was VERY close to dropping off twice, just never made it all the way to sleep.  She is now whining (for the third straight day), eating cookies and M&Ms (the only source of food she hasn't tried to throw back at me when offered) and complaining that she has owies.  She has refused to drink water, apple juice, white milk and chocolate milk.  This is not good. She could be developing mouth sores.  If she stops eating we could be her a while as they will need to give her IV nutrition.
If her fever creeps up again they will draw another blood culture and the 48-hour clock will start all over again.  They can declare a positive test rather quickly but wait the 48-hours with nothing growing to declare her negative for a bacterial infection. The main concern here is that she might have developed an infection in her port.  They are giving her antibiotics to fight off whatever might be there just in case. (SuperBugs be damned, she has been on one type of antibiotic or another since February.)
Wish us luck in sleeping tonight, I am working in the morning!

Mere :0)


Her temperature has returned to normal but we are here for the duration of the blood cultures. Better to be safe than sorry, so we will just add this as one more story to our journey.

Mere :0)


We have actually been extremely lucky to have made it this far before our first hospitalization for neutropenia. Her numbers are at rock bottom, so she cannot fight off infection. She has been there before but this time she added a fever which could be a sign of infection. They took blood cultures and will let us know in 48 hours if anything shows up or not. Until then, we are in hospital.

Happy New Year!

Mere :0)