When It All Started
The tumor had grown so large that it had burst into her abdomen. She exhibiting no symptoms other than being more fussy than normal. She had a low-grade temp for approximately 2 months (99 to 99.5). The last few weeks her eating decreased dramatically. The day before we took her to the ER she had extremely flu like symptoms with cramping, similar to someone giving birth. They would come and go just like labor pains. The ER doctor thought I was crazy. He reluctantly did an X-ray and they noticed something there. They originally thought it was a twist in her intestines. But after further scans they noticed the huge mass. Her first admission after diagnosis was 3 1/2 weeks. She almost died during sugery and after surgery. She developed peritinitis. During surgery they had trouble getting the tumor to stop bleeding. The surgeon said it was like sewing pudding. She took in some air when they placed her medport. She stopped eating and lost alot of weight. We got out of the hospital and she started radiation. The radiation site didn't have anesthesia on staff so we had to use chloral hydrate. She would throw this up, we would have to give it to her again, she would throw it up, this would continue until she passed out from exhaustion and from the rements that remained in her system of the drug. We finally transferred her to Mott Children's Hospital where they attempted twilight drugs but she had built up an immunity to them and they had to place her under general anesthesic daily for the remainder of her treatments. It was horrible. Towards the end of the week she would have breathing difficulties. Eventually the anesthesia team wanted her to have a trach placed. I fought that. Her O2 levels were 100% but there was alot of swelling from the daily tubes in her throat. They finally started using an LMA instead. She still wasn't eatting from the Cloral Hyrdrate and had lost too much weight so she was put inpatient again. This time for 2 1/2 weeks. During this time they put a G-tube in her stomach. It is a pain but it is giving her the strength to fight this miserable cancer.
Status: April 5, 2008
"...and pray for each other so that you may be healed.
The prayer of a righteous person is powerful and effective." James 5:16. So far the tumor has shrunk to about 1/2 of what it was. Now, they are considering removing it. The anaplasia has some significance but the experts disagree as to what that significance is. Usually it is seen in adults. Perhaps that is why it hasn't shrunk as expected. We are fairing pretty well most of the time. We have our melt downs and moments of extreme drama. We are all scared, tired of worrying, and hopeful. All our best!
MAY GOD BLESS THE CHILDREN !
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