For those of you that are not part of the social media phenom called Facebook, yet have access (and apparently time) to the internet, I will make things a little easier for you and offer an update – FROM RACHEL – on the news we recently received in St. Louis. So Rachel posted this lil’ ditty on her facebook page (again, it is easy to sign up and get an account and you can join the rest of the world on connecting with other people – just “friend request” Rachel or I). I figured it is better to hear it from her point of view.
11/16/09- we went for the 3 month follow up. We have been anxiously waiting for the results and had received indications that the prognosis was good. The pictures were a bit scary- it looked like it was morphing into a storm cloud. The tumor has shrunk 3 cm- which is great! The dark edges indicate scarring as it continues to die. His prognosis is that the tumor is DEAD- and the really great news is that it was on the low end of the scale and he does not think it has or will spread in the future. It has also shrunk a bit away from the optic nerve- which hopefully means less vision loss. The tumor will never fully disappear, but it will shrink in width and depth over time.
We were planning on having 3 month follow ups in St. Louis as well as multiple scans and tests to monitor any changes. However, because it is low/non-aggressive- we only have to go to St. Louis once a year for the next 5 years or so. I will get blood work every six months to watch my organs, specifically the liver, to catch anything should it arise. I will see my local opthamolgist throughout the year, but he should be able to do everything from here. I will go in for laser treatment next year to deliver one more punch to the tumor to ensure it is dead. (Sad note- I am no longer able to be an organ donor or give blood.)
At this phase it is considered remission- however the doctor said that all indications show that the radiation was effective and there is no living cancerous cells. The rule of thumb is 5 year for the official ALL CLEAR- but we are believing in the prognosis and that we will not have to deal with this thing or any metastasis EVER!
My eye is extremely dry- the cells that lubricate the eye have been damaged- so I should be buying stock in the eye drops I use because I have to use them a lot to keep it hydrated. I have had double vision due to some scarring on the muscles surrounding the eye- so we are praying that exercise and time will heal that too. We may have to visit a muscle specialist to get it corrected- but that is down the road. I do have vision loss- currently 20/60 or worse in that eye. There is nothing that can be done to correct it. Unfortunately, the damage done by the radiation is not fully known yet and may take a year or so for it to settle. We are still believing that there will be minimal vision changes and that it will continue to be healed and restored. The blind spot is permanent- which is annoying but better then eye removal, right?
We have so many people who have surrounded us with love and support. Terry’s parents have done more then we can ever thank them for to get us through this time. Our families have all sent prayers and love to us through this entire ordeal. Our life group stepped up and showed us their love and even frustrations- and really went through it with us. Friends and families from several churches have prayed and prayed- reminding us that we are one big family. And old friends and new friends alike have sent notes of encouragements. Even strangers have touched our lives in ways we cannot repay.
We are truly blessed by the news and ask for continued prayers that what God has started he will bring to completion. It is very easy to get confused, frustrated, and angry. And if you ever “research” something like this (which I do not recommend)- you will get the most conflicting and negative information, that it is immobilizing. But we continue to move forward and believe it was God who brought this to light at this time.
Thanks again for your love and support. You will never know how much it means to us and how it has brought us through this uncertain time. We have gained so much perspective on what is important and pray that we continue to live for today and to serve others.
AND a big thank you from me to Terry. You are the best husband and have always been an encouragement and rock. I am inspired by your simple faith and unconditional support. I love you and can’t wait for the next adventure.