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User logged in as Nick B
November 21, 2015 at the age of 5 years old Sarah was diagnosed with Medullobalstoma. An aggressive childhood brain cancer! We went in for an mri and never left the hospital for 9 months! The next morning she was taken down to surgery to have her tumor removed! Amazing news they removed the whole tumor and anything that was visible to the naked eye! When Sarah awoke from surgery she wasn’t able to do anything but wiggle her legs! She had suffered from a Serious case of Posterior Fossa Syndrome! She couldn’t swallow, talk or move anything but her legs! Sarah also suffered from and infection at her surgery site. We were finally able to start our first round of chemo in Jan 2016. The first three rounds of chemo really took it out of Sarah! She was transferred to the Picu a few times and even ended up being intubated! She finished her first three rounds of chemo and then we went on to the high dose rounds where they took her stem cells and froze them so that after each dose of high dose chemo they could rescue her stems cells with the ones they froze! She had a better time with the high dose chemo then the regular dose! July 2016 she finished chemo with many set backs and many infections we finally made it and September 2016 she began her 30 days of radiation! She completed that on October 6, 2016. December 2016 right around Christmas time Sarah had her first post treatment scan and she was given the result of No Evidence of Disease! She did it she beat cancer and we could finally try to get some normalcy to our lives! We went for scans every three months! Then on October 09, 2017 exactly 3 days after we celebrated her year out of treatment Mark we went for her last 3 month scan! At this point if all was clear she would graduate to every 6 month scans! Unfortunately this wasn’t the case we found that Sarah had relapsed and now had leptomeningial disease with 3 solid tumors also! We were given a terminal diagnosis and told weeks with no treatment and maybe months with palliative! With the hard core radiation and chemo and a year long stay in the hospital her chances of living were 20- 30%. We chose palliative and took our baby home to give her the best of what we could while she was with us! Then January 2018 a mother who’s son had passed from the same diagnosis as Sarah reached out to me and told me about a trial in Augusta, Georgia ran by Dr. Ted Johnson. We contacted him and she was accepted into the trial! She started the trial February 2018. The trial includes taking the trial medicine which are pills two times a day everyday! Also Chemo 1 time a day for 5 days out of the month! She has follow up visits monthly and scans every two months! From February until June she had stable scans! In June they had 3 spots they needed to watch as they could have been growth or inflammation. Her next scan in August confirmed it was intact progression of her disease! At this point we spoke about her receiving her radiation. So the doctor scheduled another mri for one month to see if it had grown anymore! The plan was if it had grown a good amount we would start radiation ASAP. If it gotten only a little bigger then we would continue to watch it! We came back in September and did her mri. Which showed that it had spread even more! So she had to start radiation ASAP! The plan is 6 weeks of radiation directly to the 3 tumors in her brain! Our goal is to get rid of the three tumors and give her immune system the kick it needs to help her body fight off the cancer. Today she completed day 2 of week 3 of her radiation! She will not have another mri until December! She is of course rocking the radiation and seems to be having no side effects! We were given months and here we are a little over a year later and she is still getting to be herself and attend school and be a kid!