Last Christmas Jovee had just got out of the hospital after her 3rd round of chemotherapy. She did not feel very good at all. We remember her sitting on the couch at Grandma’s house with all the family members around her. Even though thoughts of Christmas and presents were in the air, the sickly look on Jovee’s face and posture gave Jeannine and I and other family members a dim feeling, not knowing what lay ahead.
Christmas Eve was much more joyous because, compared to 2006, Jovee was doing and feeling much more lively. Plus she has lots of hair and wasn’t bald. Cancer bald. I watched her play with the kids and was overwhelmingly thankful for her. I just sat, watched her, and thought about some of the lessons that she’d taught me this past year of 2007:
Don't complain, be strong and courageous, believe in miracles, it's definitely OK to cry, work together to accomplish difficult tasks, be around family, friends, and people that are positive, be around people that really love you, love other people, have fun, music is powerful, smile and play lots...
The list goes on and on...
I went to bed about 9:30 pm on New Years Eve and didn't wake up until I heard Jeannine and the kids countdown to midnight. I got up just right then and they were at 5,4,3,2,1,0...I rushed over to the breaker box and the power to the entire house off right when they got to zero and it was dead silence for a couple of seconds. Then I yelled "HAPPY NEW YEAR" and then they all yelled. They didn't know what happened until my yell. It was funny (for me).
Jovee is still on Accutane, has another 3 months left. After the Accutane is done they're going to do another scan to see where she's at, where the cancer is at. If there is any remaining on the left side then I don't know what next. We've thought about doing a radiation therapy called proton therapy in Loma Linda, California, going to New York to Memorial Sloan Kettering to see what they have to offer since they are #1 in treating kids with neuroblastoma and seem to be more advanced than any other hospital, and last, very, very, very, very, very last option is to to surgery again to remove that last bit. The surgery would be equivalent in procedure, healing, pain, recovery as the big surgery on April 16th. Jeannine and I don't have the strength right now to go through something like that again. We could muster up the strength to do it if it's in the best interest of Jovee but it would take a lot of whatever to see her go through that again. She was so strong and awesome but I don't know.
Since we've been back from Seattle in mid August I don't think Sacred Heart has done a very good job in follow up on Jovee. We've had to initiate everything. There's been very, very poor communication from them. She's just another number. We've initiated her scans, labs, Accutane regiment, follow-up visits, everything. There hasn't been one, not one, single "Hey, how's Jovee doing?" or "Anything you guys need?" phone call. Really, not one. She's just another number to them.
I hope that the Accutane works and eliminates the remaining cancer. In the meantime, while she has the 14 day break, we're trying with what we know best, giving her a product that, upon hours and hours of research, we hope will fight the neuroblastoma cells. We have to be proactive and not just sit and wait to do what the doctors conventionally do. I believe that just isn't good enough. Knowing what I know and what I've learned, you have to "take matters into your own hands".
Happy New Year to everyone.