Princess Strong Update: Day 3-5

As you know Ellie had another brain and spine MRI Tuesday as well as a Lumbar Punture. Ellie's brain looked just as the doctors would have expected. Her little peanut tumor is still hanging out, but other than that her head is getting a lot closer to normal. Her spine MRI was also clear of any tumor or mass. Her Lumbar Puncture results verified that Ellie has tumor cells within her spinal fluid. In other words they are floating around in the fluid but are not attached to her spinal cord. This means she falls into the high-risk category and would follow the respective treatment. This means a couple different things. Ellie is pretty likely to have another brain surgery (very roughly in 2 months) to try to remove the rest of the tumor. She will go through approx. two rounds of chemo and then they will look to see how the tumor has reacted and what her spinal fluid is showing. Also, she will go through the high-risk consolidation treatment. At 8 on Friday Ellie will get her central line (more permanent IV) put in place. We decided to go with the internal port. She will be sedated for this procedure and also for her hearing test which follows directly after the port placement. While she is away Dr. Wright will meet with me while i am donating blood so she can go over the consent forms. On Monday Ellie will begin her chemo treatment. The chemo regimen is also attached to this e-mail. You should find a chart a few pages into the doc that tells you the medicines and which days of each cycle she will get them. Her first medicine is through a 24 hour IV. She (or should I say we) will be in the hospital approximately 3-5 days to allow the medicine to clear her body. Her next medicine will be given on day 8,9,10. Some portion of these treatments are likely to make Ellie nauseated or sick. Around day 16-17 we should expect Ellie's hair to begin to thin. Around day 18-19 is when Ellie's neutrophil (white blood cell) counts are xpected to drop and become low (aka neutropenia). She will most likely receive a blood transfusion at that time. A lot of people had told me they were willing but at this time we do not any blood donations from anyone, we'll keep you on reserve though :) At this time there is no immediate plan for radiation treatments, Ellie will need to be at least 3 before receiving any such treatment. Ellie will not be getting the "High Dose Chemo with Stem Cell Rescue" treatment that we previously talked about. In talking with Dr. Wright about that treatment she felt it put Ellie at too high of a risk for infection because it was such a high dose of chemotherapy. It may have or may be an option when she is older. Other than that, here are the other notes from our busy day on Wednesday. Day 3- March 13th 2013 OT, PT, and Speech Therapy followed by visit with Dr. Wright Occupational Therapy - 8:00 am Ellie did great with her occupational therapy assessment. The therapist thought she was on track with her skills but will be visiting Ellie 1 or 2 times a week to monitor her progress as her chemo treatment begins. Speech Therapy - 9:00 a.m. Most of this assessment was based on me answering questions about how she talks, type of language she uses, and her comprehension skills. Ellie scored 120-124 on her speech assessment. An average score is about 100 with a high/low range from 85 to 115. Ellie is above target and speaks similar to a 3 year old.. who would have guessed? Haha. They suggested trying to get outside of the hospital and room as much as possible, do normal everyday things as much as we can (store, park, zoo, museum) to keep her exposed to new words and environments. Talking to and being around sailings also helps a lot. Speech therapy will revisit Ellie in approximately 2 months to check on her progress. Physical Therpy - 10:30 a.m. Ellie enjoyed the physical tests the instructor asked her today, she had fun playing. Angela (PT) said that Ellie performed well on her activities and that she just needed to get her strength built up again. PT will visit Ellie 1 or 2 times per week to work on and follow up with her strength building. Thank you all for continued prayers and taking care of my family while I am away. love you all!