I sit here in the nurseís station, wondering around in the middle of the
night, unable to sleep, I can only wonder why these things are happening to my
sweet little daughter, who has been through so much already.
Hasnít she already paid her dues?
Wasnít being born 1 pound 7 oz and spending 89 days in intensive care
enough for one child to endure? Canít
she be allowed to move on with her life?
Why did I foolishly think that the IV lines, heart monitors, and
breathing machines would end? Why does my wife have to endure the torment of seeing her
child suffer before her eyes? Why
can I not stop their pain? Why can
I not do something more to help my family?
Why do I, who always has an opinion and an answer on everything, not have
the answers to my own daughterís turmoil?
Monday, Stacey and I took Addison in to the hospital to have a stomach
ultrasound. She hadnít been
eating right for a few days, and we thought it had something to do with her
reflux. The ultrasound revealed
that there was something severely wrong with her liver.
We were immediately checked into the hospital, and had a CT Scan, which
confirmed that there was indeed not only one growth, but two.
They were more than likely cancerous tumors.
She was immediately sent to surgery on Tuesday for 3 procedures.
The first, and most dangerous, was the biopsy of her liver to confirm
whether the tumor was malignant or benign.
The second procedure was to put in a central line (perk line) into her
vein (the same as when she was in the ICU before), close to her heart, for a
future site of blood draws, as well as IV injections (this was so she isnít
continuously getting new vein punctures). The
third procedure was a bone-marrow biopsy to test for the spread of the cancer.
went well with the three procedures. She
has pulled through like a champ. We
found out immediately that it was cancerous, but the testing of the sample would
take a couple of days to determine the exact strand of cancer.
We found out Thursday night that the cancer has not metastasized to her
bone marrow, or anywhere else in her body.
It is confined to her liver, only. The
cancer was found to be hepatoblastoma. This
type of cancer is treatable with chemotherapy.
By treatable, I mean it can be reduced in size. Once
it gets down to a smaller size, then the doctors can operate and cut out the
last bit of bad tissue. In
Addisonís case, however, the cancer has already made her liver over 3 times
its normal size. It has all but consumed it.
Even if they reduce the cancer, they will more than likely not be able to
save her liver, and therefore would still require a full liver transplant.
bad news is that she will not even be considered for a transplant until she is
at least 20 pounds. As of last
Friday, she weighed in at 7 pounds 10 oz. A
far cry short of the requirement. We
therefore are in the dilemma of trying to have her gain almost 3 times her
weight, while on serious doses of chemotherapy, which include nausea, vomiting,
as well as bowel problems, among many other side effects.
The treatment is scheduled to last around 9 months.
After that, the doctors will have to make up their own protocol on how to
proceed to keep her around until she reaches the required weight.
if she reaches the required weight, we will still have to find a suitable liver
donor with O-positive blood. The
donor will have to be willing to donate part of their liver (which grows back
completely within 2 months) and be willing to be out of work for a minimum of 6
weeks for their recovery. She, in
turn, would have to go through the serious operation (5-8 hours) and see if her
body rejects the liver, or isnít able to support it properly.
ifís and no concrete answers. Her
pain has only begun. The stress
level is at an all time high. I
thought things were the worse they could ever be while we were in the ICU those
many months after her birth. Boy
was I wrong. As it turns out, I
didnít really know her then, she was just my daughter.
Now, I know her and have seen her beautiful face light up when she sees
me come home from work. Her smile
can soften the most hardened human being on the face of this earthÖ
havenít seen her smile since Tuesday morningÖand itís literally killing
to follow when I have time. Addison
starts her chemotherapy in the morning.