9/25/03

As I sit here in the nurse’s 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.  Hasn’t she already paid her dues?  Wasn’t being born 1 pound 7 oz and spending 89 days in intensive care enough for one child to endure?  Can’t 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 daughter’s turmoil?

On Monday, Stacey and I took Addison in to the hospital to have a stomach ultrasound.  She hadn’t 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 isn’t continuously getting new vein punctures).  The third procedure was a bone-marrow biopsy to test for the spread of the cancer.

All 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 Addison’s 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.

More 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.

Even 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 isn’t able to support it properly.

Many if’s 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 didn’t 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 earth…

I haven’t seen her smile since Tuesday morning…and it’s literally killing me.

More to follow when I have time.  Addison starts her chemotherapy in the morning.

Mike