One Step Forward, Two Steps Back

Friday was Madeleine's 5th MRI. This one was to confirm the success of the tumor resection. Within two hours of completing the MRI, both the neurosurgeon and her oncologist were in our room to share the news. By most standards, the surgery would be considered a complete success with 100% removal: we learned there is a very small 1cm x 1cm piece of the tumor left in the cavity. Needless to say we were very, very pleased that Madeleine came out of the surgery just as she went in and had zero adverse effects from the surgery. The fact that there is still a small piece of tumor remaining does not discourage us and we are moving forward with the next cycle of chemo and counting on it to shrink/dissolve it based on the success of the first cycle. We were discharged late Saturday afternoon and she is now resting comfortably at home for her post-op period before we go back Wednesday to have her sutures removed and begin chemo. 

The second bit of news is that as a result of the rarity of the AT/RT diagnosis, Madeleine's tissues were sent to Children's Hospital in Philadelphia where they are leading the genetics research and testing. After several weeks, we learned the outcomes of her test. Madeleine is positive for a genetic mutation, the INI1 gene, which has been associated with rhabdoid tumors of the brain, kidneys and abdomen. This gene is apparently for tumor suppression in the body; it keeps the body from allowing abnormal cells to develop and grow. Madeleine's gene does not protect her. As a result of the mutation, Madeleine is predisposed to these tumors. Right now while she is undergoing chemotherapy for the tumor cells in her brain, it is not likely that she could have new malignant cells growing. Even after this nightmare is over, she will continue to be under very close observation every 2-3 months and 6 months until she is 5 years old to catch any new rhabdoid cell growth. After 5 years old, she should be fine, until she is an adult and is making family planning decisions.

This news is awful. I can't begin to describe how we truly feel about this. I feel that if we understand it and  come to terms with what we have to deal with, not unlike the prognosis given, we cannot dwell or even really talk about it. By not acknowledging this fact with words, we are protecting her; what does not come out of my mouth does not become reality. 

Today Madeleine is so much more like herself. She's had to be on a steroid since the surgery to control the swelling in her head that ridiculously increases her appetite and the nurses tell us is extremely mood-altering in older children, explaining her incessant irritability - this is her equivalent to throwing fits. She's nearly done with that medication and it will take some time for her blood pressure to come down completely as a result. She also had to be on an antibiotic that gave her diarrhea in every single diaper, poor thing. As of this morning, the wound protectant they gave me to use as diaper rash cream is working and she's not nearly as miserable from her raw bottom. Today she is talking and laughing, following your face better and staying awake for longer periods without being fussy. I hope the next couple of days at home she will eat like a horse and go back with some additional weight before chemo and be the happy baby we want and see.