I have been every direction including sideways for the last few months! Hugs to all of you that continue to ask about me and pray for us! I know it has kept me afloat to know you all are still out there!
The last 9 months have been beyond crazy in my life. It probably appeared that I fell off the face of the earth, that honestly might have been easier.
So here we are in late June and a report of a stable MRI!!!YAY! At this point, I am 2 years from the diagnosis of the brain tumor. The doctors basically say you just sit and wait for it to grow, as they assure me this tumor will grow within the 5-10 year prognosis window.
This fact does not sit well with me and actually seems rather counterintuitive, so I am supposed to wait for it to grow, which means it gets bigger and has more sights of invasion and then attempt the same chemo that I already had??? I'm not sure about that plan!!
So for all of you who know me well, I am a fighter and pretty darn stubborn. I have been reading and researching for months, my computer and house are covered with articles about different types of therapies and optional treatments, in the US and abroad. NIH trials, MD Anderson trial studies, hospitals in Mexico, in Europe,etc. After so much research that our heads are spinning, reaching out to other patients, strangers, doctors, academic institutions, travel to other states to research and question, I believe I have decided on the best therapy that I can find. There are two treatments that have been in use in Europe for nearly 25 years and the data on these treatments is amazing. There are many studies occurring in the US but they are just that, studies some Stage 2 or Stage 3 trials at these many institutions but none have moved forward to obtain FDA approval. Sadly brain tumors are at the bottom of the list for funding and research in the US so that means it will take a very, very long time for these treatments to be tested and approved for adult brain tumors. I am not willing to wait, as I may not make it to the time that these treatments finally get FDA approval!
I have been so blessed to be surrounded by such loving friends and supported every step of the way. My dear sweet "people" and 'village' is reaching out to help me again!
A go fund me page is now set up and linked to my new Facebook page and Caring Bridge page. There are probably many of you who had your jaw drop when you saw a friend request with my name on it, because I have been in the 'dark ages' resisting social media for years! I finally gave in a few weeks ago when all of Abby's friends moms said they wanted to start working on fundraising for my international treatments. I have been so touched by their ongoing prayers, thoughts and support during the last 4+years, so here I am reaching out to all of you.
June has been flying by and the time has arrived for my bags to be packed!! I have to fly to New York this Wednesday June 26th, for an infusion that will boost my immune fighting cells. Then Saturday, June 29th, an overnight flight to Germany. I will have a day to rest once getting to the hotel in the town of Dudderstadt. Then on July 1st I will meet with the oncologists at the hospital. Another day to rest, then to the hospital to have leukapheresis started, which is a process to take blood and separate specific cell material for use in my treatments.
I don't know if these treatments will be the answer but I know that the 2 years I've been going through this trial have led me to this point. I will be posting daily as the trip progresses and keep you updated on what is happening and the plan moving forward.
Hugs and kisses to all of you! Please keep praying!! I love you all! Help spread the word!