Dear Jesus, you are so good to me.
Re-reading some of my recent blog-posts, I noticed how much I mentioned pain. I’m typically not like that, but looking back now on the past couple of months, I can see just how much pain—not just physically, but emotionally and spiritually—I was in. Physical pain blooming from within my heart, my lungs, reaching more and more for pain medications than I like to even admit. Emotional pain: hearing terrible scan news, being encouraged to have power of attorney and end-of-life conversations. A new tent of sorrow hung between Josh and I, seemingly invisible but always there, connecting us in new ways that can’t even be spoken about (or maybe, we thought if we spoke, the tent between us would just collapse, with what little shelter we had to protect our hurts and hearts we desperately wanted to keep it there.) Thank God for His mercies and comforts He gives on this earth. Great friends from my church who come over with a single, last minute evening text to listen, laugh and cry with you. Doctors who are truthful and compassionate, taking time to listen and explain the best ways they can. Medicines that heal and massages that take away aches and acupuncture needles that create constellations of alleviated pressure points.
We had some good news come to us during the midst of chemo week last week. I got accepted into a clinical trial in Florida! I am very excited about this since I have been waiting for the trial for months to come to Columbus, but it keeps getting pushed back because of legal reasons. How ridiculous! People are waiting eagerly for this drug, myself included! So I told Nick a couple weeks ago to put me on the wait list for the Florida study, and about 10 days later I hear that I’ve been accepted. So much for all the months of waiting! The clinical trial is specifically for relapsed Ewing’s Sarcoma patients. This is very exciting news! I have never had the opportunity to be part of trial that is specifically for relapsed Ewing’s Sarcoma patients, so this could be huge.
So many of you have donated or shared my GoFundMe for travel expenses. Thank you so much for your generous support of Josh and I! We will be heading to Florida early May and hope to stay for bit to vacation some. We definitely need it!
Please be praying for us for safe travels there and back, and for connecting with the doctors and care team there in Florida. It is so important and vital to have a good connection with the doctor, to literally trust your life and health to their opinions and decisions. If there is no respect mutually or no warmth and concern, that’s a bad sign! I’ve definitely learned that over the years just how valuable the patient-doctor relationship can be. I’m so grateful for all of the amazing and loyal ones I have had who God has used to keep me here over the years. Definitely wouldn’t be here without their wisdom and actions!
I’m currently at the hospital now as I type this. I returned here on Wednesday because of a fever. Anytime I get a fever, I have to come in (typically to the ER because of the timing) in order to make sure I don’t have an infection. Now, over the years I’ve had many, many fevers but I have never actually had an infection. Of course, this one time that I just dreaded checking to see if I have a fever, dreaded making the call to my doctor, I actually have an infection, technically 2 different types of bacteria trying to grow in me. That Wednesday morning I just woke up dizzy, and thought it was potentially a migraine coming on. And then I started sweating, and now here we are, on hooked up to an IV poll with fluids constantly running, various antibiotics flowing and steroids streaming within me. I’m supposed to be here until Monday at least Pray that I don’t go crazy here! Or that something happens that makes me stay even longer. I feel pretty good actually, so hopefully I can get some writing in and use this time productively instead of watching the Food Network haha.
Please pray for a quick recovery and for a healthy body to start off this clinical trial right. Pray for peace and wisdom as I go through all the legal paperwork/will things. It can be a bit overwhelming to just take time to think about and process. It’s been a slow one, but I have great help and even Greater Hope to turn to.
Thanks always for reading!