Hello from beautiful San Diego! Here's a quick recap of this crazy week we've had!
Monday- We moved just up the hill to a great house with a gorgeous v...
Let the Radiation Begin!
June 5, 2014
Appointment at 8 a.m. Everything is very new at scripps so delays with the machine are continuing but not unexpected. Dr. Chang is going to China ne...
Friday June 6th
June 9, 2014
New Journey- Radiation!!
May 18, 2014
Beware of this novel!! :) I have forgotten to update my website since my smile surgery last April! Sorry! I'll just get right into everything! So in January of last year I had my regular 6 month MRI and appointment with my Neurosurgeon Dr. Walker. It had been about 5 1/2 years since my last brain surgery in August of '07. He mentioned that it was about the size that it was before the last surgery so we should start thinking of removing it soon. We assumed that that meant 4th brain surgery but a couple months later we met with him again and he told us that we didn't need to rush into anything but that we should start thinking of other options to get rid of the part (about 20% of it) that is too risky to get out in surgery.
It wasn't until the beginning of this year that we started to really plan. With only a year left in pediatrics and Dr. Walker retiring this July he told us all of our options. We could do another surgery with Dr. Walker and a new neurosurgeon that we would choose, we could do chemotherapy for a couple months to "highlight" the tumor before doing surgery, or we could do radiation treatment. Dr. Walker has always based his decisions on giving me the best quality of life. He didn't want to rush into another risky surgery when I would need another one soon by a new neurosurgeon that couldn't remove the inoperable part. So we began looking at our radiation options.
We met with the oncology doctors at the Huntsman Cancer center in Salt Lake in February. My dad has been researching a form of radiation called Proton Therapy ever since I was diagnosed in '99. However we knew we couldn't do any form of radiation until I was at least 11 due to brain development. Proton therapy is a form of radiation that is 1/2 the risk of normal radiation because there is no "exit dose". In normal radiation the radiation enters and exits at the highest dose but in proton therapy the entrance dose is smaller and then it basically just explodes in the tumor, but only in the cancer area, and does not exit out. So when talking to the doctors at Huntsman we mentioned proton therapy and they agreed that that would be the best even though there isn't proton therapy available in Utah. So we looked into the 16 hospitals/centers across the nation that has it. Our first choice was to go to the MD Anderson Cancer Center in Houston, TX. With my mom's family who lives in Houston and MD being the #1 cancer center in the country we were planning on going there. But then after a hard time contacting the people at MD, we heard of the brand new Scripps Proton Therapy Center in San Diego. We contacted them and after emailing and talking to Dr. Chang we knew that this was the right choice.
So this Wednesday me, my dad and my brother Brady drove down there. We were able to stay at the Ronald McDonald House that is right across from Rady Children's Hospital which is associated with Scripps proton center. The RMH was such a nice facility with such great people! On Thursday we went over to Rady's to meet with Dr. Chang (pediatric oncology and proton beam radiation oncology) and Dr. Crawford (Rady's neurology) along with so many great caregivers! They did a pre-radiation consultation and then Dr. Chang took us to Scripps for a tour! It is also such a nice facility with such nice staff and workers! I don't quite understand how radiation works but it's really crazy how it does, especially proton radiation!
On Friday morning we went back to Scripps to do an MRI and a CAT scan as well as make the mask that is used during radiation. It all went really well and they all took such great care of me! We drove home after we were done on Friday. Now we will wait 2 weeks for them to prepare everything for the treatment and then I will go back around the 2nd of June and start treatment. It will be Monday through Friday for 6 weeks which is about 28-30 treatments. The actual radiation only takes about 30-45 seconds but the whole process will take about 30 minutes every day.
I will come home on Thursday June 26 to go to the last few days of my last year at Girls Camp! It's not good to miss more than one day of treatment and so I'm so glad that Dr. Chang is allowing me to come home after treatment on Thursday and then return to San Diego for treatment on Monday. The earliest date of being done with treatment should be the 10th of July. Depending on how everything goes it could be the next week. My dad will be going with me throughout the 6 weeks along with visits from my mom and siblings! I'll definitely have a lot of time on my hands so I would love feedback on books, movies, crafts, places to see, anything! I'm excited for this new journey in my life and I know that it is what is meant to happen, no matter the outcome. I have always felt angels helping and guiding me throughout my life but I now have two very close angels that I know have already made so much of this possible and will continue to comfort me and my family. Thank you every one of you for your support and love!