Random Thoughts and Musings

My best friend (C) had a baby (S) in May. Three days after the baby was born, I noticed that the folds on her back were not baby fat, but some other mass. I brought it to C’s attention, who brought it to the attention of her hubby (B). They decided to take the baby into the doctor the next day, rather than wait for her two-week checkup.

The doctor told them the bumps were not much to worry about, but that they’d run some tests. One thing led to another, and we were told that it is possible the baby had to have surgery. At nearly three weeks old, S was admitted to the hospital to have some tests run. We were told she would most likely be there throughout the week. The same day, we were told that she had cancer. We were, obviously, devastated. A spot was discovered on her liver, but we were told that this spot was secondary to the masses on her back, because it could be any number of things, most of which were no real danger long-term. The next few days, more tests were run and a biopsy was scheduled. We were told it was most likely a neuroblastoma, which, in a baby, could be a VERY good thing. If it was a certain kind of neuroblastoma, her own antibodies would fight it off. If not, she’d have to have chemotherapy and with the number of tumors she had (we could see three on her back by then, and weren’t sure how many others there were), her chance of survival was low.

I had already set in motion prayer circles through our Church, our families, our friends, my boss’s Church, my boss’s family, and my friends and acquaintances on Twitter and Plurk. Some of my very generous friends (who asked to remain anonymous) donated money to help get me back and forth to the hospital (Sacred Heart is an hour or so away from where I live and where I work) so I could spend the nights with C there, while her hubby came home to be with the other kids (they have five). Again, I wanted to thank my friends for their help, because I know how lonely and scary hospitals can be at night, when you’re alone and your brain is working overtime. C is very thankful as well, because having me there meant having someone to lean on, someone to cry to … because she felt she needed to be strong for her husband when they were together.

The surgery was successful, and the doctors said that the scans showed that the tumors were benign. We asked about the mass on her liver, and were again told it was a secondary concern. After a few more tests and a growth culture, we were told that the cancer was gone from her body. We were shocked, amazed, and grateful. Once again, we inquired about the spot on her liver … and were told it was nothing, a minor concern, they would just keep an eye on it over the next several months. Another very generous friend (@zaibatsu) sent a gorgeous set of baskets filled with goodies to congratulate C, B, & S on the great news. We began to feel like all was well and right with the world again.

A few more weeks went by, and her checkups were all good. We still had a nagging feeling about the spot on her liver, but were continuously told she was fine, that if it increased in size, she would be taken in for further testing.

One day, at a normal checkup, her doctor said he wanted another test on the liver. Upon questioning, he explained that the mass seemed to feel larger to him, and he was concerned. C & B felt that not enough time had passed since all of the other radiation-based testing, and began asking if there was another way to determine what was going on. We were referred over to another doctor, an oncologist, who immediately began firing off questions to us, the doctors, and the previous oncologist. Apparently, the spot on her liver WAS something to be concerned about. When he reviewed her charts and tests from before, he pointed out several things that should have been key indicators that the spot needed to be watched more closely. He ordered some blood draws, chastised the previous oncologist for not having them done before (because if the blood work had been ordered before, we’d be a whole month ahead of where we are now).

The last three weeks, S’s blood has been drawn and sent into the labs. A particular level they were looking for started out at 5600, dropped to 1200, then the blood draw this week (taken yesterday) jumped to 8800. The doctored called C, directed her to go to the hospital immediately so they could do another ultrasound.

About an hour ago, I got the call: the baby definitely has cancer, STILL. The spot on her liver is a mass that needs to be removed, immediately. C and S checked into hospital today, more tests to be run, blood to be worked up, stuff to be done. And I’m driving out there immediately after work. I have to come back to town tomorrow to work my shift, and will drive back out to hospital tomorrow afternoon. I simply can’t afford to lose the hours, which I know seems ridiculous, since it is only 4 hours. Asi es la vida.

The baby has, officially, hepatoblastoma. Officially, the news is good: it has a 100% recovery rate if the resection is complete the first time, and followed immediately by adjuvant chemotherapy. We are holding onto that information and keeping it close to our heart. (The alternative is that there is residual disease left on liver inadvertently … even with aggressive chemotherapy, the outlook is not good.)

So, once again I put my request out there to all of you:

Please, if you believe in prayer, pray for my niece. If you do not believe in prayer, please think positive thoughts and keep a warm thought or two in your mind for little S as she goes through this ordeal. Also, please pray for C & B to be strong, to keep positive thoughts, and to focus on the good and not the negative. I will be by their side as much as possible, leaving only to come back to town to work, and will be doing my best to bolster their spirits. But warm and positive thoughts, prayer, and knowing we have people behind us all help.

A photo of S and I cuddling in late July 2008

Tags: baby, cancer, family, hepatoblastoma

6 Responses to “The “C” word …”

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