Ryan was so sweet and arranged everything, we got a 3 hour personal tour in a fancy brand new Mercedes Benz....I felt like a celebrity!! We were able to catch the major monuments at the National Mall, before headed back. It was perfect. I loved seeing Ryan so filled with excitement and joy as we both could be cheesy tourists together. I'll post some pictures below. That day ended with a brilliant lightning storm right outside of our hotel. It was so awesome!! I kept thinking how mighty and powerful our God is, and singing a song (I think I made up) "did you hear the thunder roaring...." Im pretty sure the lyrics are different-but it seemed appropriate :)
Everything about the screening went well, NIH is a wonderful place with very friendly staff, we felt welcomed and cared for. We were there all day, and the last part of the screening was to meet with the Clinical Associate and then the Attending Physician. After having all our questions answered and having the study explained to us, the Clinical Associate said she'll be right back with the Attending Physician after they look over my CT scan to pick out which tumor would be best to remove for harvest of the cells. She was only gone a few minutes when they both returned and the Attending Physician said he had bad news. After reviewing my CT scan and comparing it to the CT scan I just had done on the 18th (only 8 days prior) that the cancer was growing at such a rapid rate in my lungs that I was not a good candidate for the study.
The news was devastating to us both, and the rest of the day was filled with tears, hugs and a lot of I Love Yous. We talked about the reality of a sooner death then originally thought. We talked about how far we wanted to go to find a solution. We talked about my quality of life I have in these current days and wanting to make sure they are without pain. We talked about God, and how we will trust in His sovereign plan-no matter what. We also know that I am not without hope, and I am not without fight. Even now as I right this, I feel pretty "normal" and I can't comprehend that something is killing my body more and more each day. So bottom line is that we are not giving up and will look for another door to open, but in the meantime, making the most of each moment we have together.
I am in a lot of pain these days and could tell the cancer was growing by the way my body was experiencing pain, seems like each day there is a new spot. I just recently started a better pain management plan, but it will need to be adjusted. I'm going to request new radiation spots to help my pain as well. Besides the pain, my cough is the biggest issue. I have horrible coughing fits, where a lot of gunk is coming out-I'm assuming mucus from the tumors. Well this mucus feels like it rises up in my lungs then gets to the point where I feel it block my airway and have a deep, violent cough until it comes up, and these last anywhere from 2-10 minutes. They come from no where too, it's not like it only happens after I'm being active, I can be sitting on the couch for an hour then-boom-it hits. Like I said this is the most concerning, as there are sometime where I feel like I literally cannot breath because the mucus is too thick to have air break through. However, when I'm not having a coughing fit, I am fine, so it's very up and down....front and back....side to side....it is pretty much is a tornado! Haha. We will see Dr. Jae Lee on Wednesday to discuss what's next.
I want to make known an opportunity for you to help Ryan & I during this time that is also tax deductible. My Pastor wrote it best on his weekly email, so I"ll just copy & paste it here....
"I spoke with Amanda yesterday, and unfortunately she was not accepted into the T-Cell trial, the cancer in her lungs is growing too rapidly for the trial to be effective. This is difficult news to process, for all of us, but especially for her UFC co-workers. She and Ryan will be flying home today, please keep them in your prayers, and do be praying for our team. I’m not sure what comes next, but wanted to keep you informed.
As you can imagine, the financial burden during this time has been heavy for Ryan and Amanda. The elders have established a “benevolent fund” allowing us to step up and help with these needs. If you would like to contribute to their needs, make your check payable to UFC and note it to Amanda."
University Fellowship Church
25 W. 25th Ave
Eugene OR 97405
OR if you are tech savvy you can donate online through UFC's online payment system. You'll need to sign up for The City and make sure you add your address to your profile to ensure you get your tax receipt. If you don't have checks I assume you are able to navigate your way through the website and instructions pretty easy.
Here is the link: https://universityfellowship.onthecity.org/login?seshReset=true
- Create an account
- Add your address to your profile
- Go to "Giving" tab
- Donate
We both woke up Friday morning knowing it's a new day with new mercies and new opportunities. Not getting accepted is old news now ;) But the tornado isn't over yet...On the day of our departure Ryan started to feel a little sick. By the time we made it to LA for our layover, his stomach was in a lot of pain. And if you have known Ryan over the past year, you know where this is headed.....Ryan had another bowel obstruction. Our flight from LA to PDX was horrible, he was in full blown bowel obstruction episode, we got escorted off the plane first because of his medical emergency. Ryan made the decision to get to Eugene's ER/Hospital so he can be close. So I drove us to Eugene and dropped him off at the ER where he was quickly admitted. He is still there and showing signs on improvement. A quick lesson on bowel obstructions....Ryan has a history...they can either move on their own (with the help of an NG tube and other meds at the hospital) or they can be removed through surgery. Over the past year, both of these things have happened to Ryan. Last August he underwent a massive surgery to remove multiple obstructions, and just in February he was admitted for 4 days but that obstruction was able to pass on it's own. The second option is what we are hoping for, and he is already making good progress. We hope he will be released tomorrow!! Praise the Lord.
God is still good, no matter what God is good! We saw little blessings even in the 2nd part of the tornado...too many to list....or maybe I"m just done typing ;)
