Round 2 starts Dec 27th

Written by Val

Bella is in month 4 of being diagnosed with pineoblastoma. She has a few more weeks left of vacation before beginning round 2. Last week she had a kidney test to see how they are functioning. We hope to find out results this week. Tomorrow Bella has her first MRI after having her 30 chemo and 30 radiation sessions. Bella's Oncology/Radiation team of doctors is looking to see if the tumor is stable or if it is growing. They informed us to not expect much shrinkage yet (we are definitely praying for it though!!). We also have to set up a hearing test in the next week or two. - PLEASE PRAY FOR STABILTY, NO GROWTH! shrinkage is good too! ;)

Round two is called Maintenance which starts on Dec 27th. We will be in the hospital for hopefully only four to five days (Bella wants more time in the hospital to play in their cool playroom and of course for music therapy, puppy therapy, and to hang out with her favorite CHOC doctor - Jody!). The medicines she will be on for the Maintenance phase are: Cis-Retinoic Acid (Retinol - yup, this is usually known for treating acne) This is given on Day 1 and days 16-28. (Bella has six cycles. Each cycle is 28 days. She is in the hospital for the first 4-5 days of each cycle). For chemo, she will be on CISplatin -CDDP. VinCRIStine-VCR, and Cyclophosphamide-CPM. CDDP is given on Day 1 of each cycle. CinCRIStine is given on days 1 and 8, and Cyclophosphamide is given on days 2 and 3. After all the above is given, it is assumed and expected that she will need the horrible G-CSF shots that I had to give her at home during round one. This will be needed on days 4-28 if her ANC levels are below 1500. (you need an excel chart to keep track of the above)!

Bella has been doing quite well during her time off. In November she went to the Thanksgiving party in her classroom. The kids miss here so much and she misses them. Although she lost her hair and is so pale, her classmates welcome her with open arms every time they see her. She loves to take her hat off and have them feel her head. (They seem to love it too)! I can't explain how wonderful it is to see her friends react to her this way. We never know what to expect when around other people. At home, we are used to her new look (she has lost her hair on her head as we know, but she has also lost about 1/3 of her eye lashes which has really changed the look of her eyes). When we go out, of course there are a few stares here and there. Recently we were at a restaurant and a sports team of young girls came in. I took Bella to the restroom. When we got back to the table, the table of girls next to us whispered so loudly saying: Look, she has cancer. My heart completely broke to pieces that night and it was practically impossible to make it through the meal. On a happier note, Bella has had fun shopping for Christmas, making her list, visiting Santa, spending time with her family, decorating and she is now starting some of her home schooling! We wanted to go ice skating this week but she got her very first cold so we have to take it easy for the next couple days. She is on a Z-Pack to hopefully get rid of it ASAP.

We want to thank you all for your continued prayers, love and support. We feel it everyday in so many ways! Everyone keeps asking me how do I hold up? All I can say is, Sam and I are only able to do it knowing we have God and all of you to help us get through this. Everyday we remind ourselves of our blessings. Although we go through this fight against cancer, we are so blessed to have all of you help us get through this.

Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.”

NEGU! Never Ever Give Up!