He’s moving!!

I've been sitting for nearly an hour making notes, reading scripture and praying about how to compose this post. Ya' know when your heart is so full it is difficult to put into words what is happening inside? Well, that is how I feel today. To say God moved some mountains yesterday feels like a gross understatement. To know thousands were interceding on our behalf, expectantly waiting for God to move, and for me to be a participant in His mighty answers - it is almost too much for me to take in. So, I will somehow do my best to clearly communicate what happened yesterday (and today) and how we can move forward in prayer and praise . . . all pointing to our Father, the giver of good gifts, even in the unlikeliest of places.


To recap, Monday at MDA was a marathon day filled with both good news and bad which provided us with more direction for treatment. On Tuesday, I was adamant cancer would NOT dictate my schedule, so Daddy, Mommy & Alexa Hope spent the day at the Children's Museum of Houston (one of the top in the nation by the way) and I believe I only had to take one call from MDA. (More pics to come on this super fun adventure. I WILL have a post dedicated to Alexa instead of cancer). However, the biggest surprise Tuesday came that evening when my dear, dear friend, Shannon, showed up out of the blue. I just couldn't believe my eyes. She was there to offer her prayers, her support and her smile in-person. It was so incredibly special and a moment I will never forget. Ty sweet friend for the sacrifice you made to spend the last two days with me! From photographing us in Galveston to shaving my head, you have been an integral (and hope-filled) part of my journey. It seemed only fitting you would be a first-hand witness to God's goodness on Wednesday. After all, you made the "God is good" watercolor, right!?


And so, Wednesday arrived. It wasn't supposed to be a big day. The only appointments on the docket were Dr. Sharaf (my plastic surgeon) and a meeting with Nikki, a research nurse for Dr. Benjamin. Although we had asked everyone to pray for an appointment with my radiation oncologist, Dr. Brown, I had seen on my online portal that my appointment with him was next Thursday, Nov. 14. Here's a rundown to the beautiful twists and turns on this day. I know it's long, but if you've been praying, it's worth reading.

DR. SHARAF (plastic surgeon)

This appointment was very brief. Sharaf was very pleased with the healing of my forearm incision and was in agreement with Dr. Lin that I could begin hand therapy. Sharaf didn't see any need for continued follow-up unless I had issues. He, too, concurred it was time to move forward with my treatment and start the chemo pill, Votrient.

NIKKI (research nurse for Dr. Benjamin)

Following my appt with Sharaf, we met with Nikki, a very sweet nurse, who educated us on a new molecular study MDA is providing in which I'm participating. I am really excited about the potential this could offer my future treatment!! I am one of 3,000 patients currently enrolled (200 of which are sarcoma patients). They will eventually have 5,000 total patients in this study. All I had to do was sign a few consent forms (and I do that often these days) as well as give some blood (ironically, I do that often too). In turn, this is what they will do . . .

-- In the next four weeks, they will investigate my cellular make-up (particularly in my soft tissue where the cancer originated) and try to better understand what mutated in my cells to form Epithelioid Sarcoma.

-- In the next eight weeks, they will study my genetic markers to see if anything in my genetic make-up lends itself to ES, and if there is a possible way to target & turn off those genes to prevent the further spread of ES.

For me, this was huge as it served as a confirmation to continue treatment at MDA. One of the alternative medical therapies which really interested us, offered this exact type of research to provide the patient with a more personalized/effective treatment. Now, I have the privilege to reap this benefit at MDA with insurance coverage to boot! The nurse also confirmed I had one of the best docs at MDA (Dr. Benjamin). She said he had the most experience with sarcoma, was the most thorough and was simply brilliant (she didn't mention bedside manner), but we were all grateful to hear those words. She also confirmed Votrient, the recommended chemo pill, was a great next step toward ridding my body of this wretched cancer.

WHERE IT GETS GOOD :)

So, the day was off to an encouraging start. We already had some pretty special answers to prayers. Then, we talked through any other items we wanted to address at MDA before heading home. I decided to go back to the Sarcoma dept to clarify a few questions I had. I also tried to call Dr. Brown's nurse and see, if by any chance, we could see him this Thursday instead of next Thursday. When my call went straight to voicemail, I figured that was God's way of saying, "Be still and rest in next week's scheduled appt." However, what happened next was a beautiful illustration of what we studied in Matthew 7 this week in BSF.

In Matthew 7:7-11, Jesus teaches the principle of "Ask, Seek & Knock" or praying with dependence, perseverance, boldness & confidence. Our lesson encouraged us to "Ask" (to depend completely on the Lord), "Seek" (a determination to look for God to answer) and "Knock" (to persist in prayer to see and know God).

I had already "asked" by calling Dr. Brown's office to see if we could get in. I only got a voice message and knew Dr. Brown's nurse, Kimberly, doesn't return calls until the end of the day. So, we decided to "seek" Kimberly, out. We went to the brain/spine department where Brown clinics two days a week. We asked the receptionist to see Kimberly and she said Kimberly was in the radiation dept on the other side of the building. And so, we "sought" Kimberly out there as well. When we arrived, the receptionist told us Kimberly was on another floor in Waiting Room E, so we "sought" her out once again.

When we arrived in the waiting room, we didn't know what to do. There wasn't a check-in station - just a waiting room and a door. We saw nurses/patients coming in and out of that door, so Kimberly had to be in there. I didn't want to impose. I didn't want to overstep my "patient" bounds, but I decided to "knock" on that door. A gal answered. I asked for Kimberly and she appeared almost immediately. She apologized saying she was really busy but asked if we could wait a couple of minutes. We agreed wholeheartedly. A few minutes later, Kimberly came out, and I explained my dilemma asking if we could see Dr. Brown this Thursday instead of next. She told us he was leaving town on Thursday and would be gone through the following Wednesday. My heart sunk but I, once again, felt it was confirmation to be settled in my original appt. Then, Kimberly asked what we were doing today . . . we perked up and said "nothing." She asked us to hold on and she'd see if she could squeeze us in. About 20 minutes later, we were sitting in an examination room preparing to see Dr. Brown!! To add to this, Dr. Brown gave us about an hour and a half of his time. It was incredible to see "ask," "seek," and "knock" in a literal sense, absolutely incredible.

Long story longer, Brown came in (after reviewing my hip/pelvis MRI and PET scan) and told us he saw cancer in my T2 (a new spot by the way) & L2 vertebrae and he could address that with the same stereotactic radiation he did in my C7 (which is doing very well thus far). However, he would not be able to do stereotactic radiation on my hip/pelvis area as the cancer was so close to my joint. He said he's never done stereotactic so close to a very valuable joint and he has done more radiation than any other doc in that dept. He said it posed risks like creating scar tissue that might lock-up my joint and disable me to move my leg. Of course, I was disappointed as I knew Epithelioid Sarcoma was pretty resistant to general radiation, plus it would require 10-20 treatments, more side effects, and a higher probability of recurrence. Not being able to move my leg or having cancer spread and potentially face a hip replacement?  Hmmmm - they are both such attractive options, aren't they!?

After asking several more questions about general radiation, Dr. Brown stood-up and said, "Let me check your scans one more time." He returned 5-6 minutes later, and said (with great confidence, I might add), "Let's do it!" I clarified, "You mean stereotactic radiation on my pelvis?" He said, "Yes. I believe I can attack it from three angles." I was like, really!? I was also ecstatic - so much so, I gave him a high-five. I reiterated how much I trusted him and I was so thankful he was my doc.

I think we were all beaming in that examination room. I even saw a few tears well up in Shannon's eyes as she looked at Dr. Brown and said, "You'll have over 5,000 people praying for you when you take care of Kels." And we all know, he already had over 5,000 people lifting him up that very day in that very moment. Beautiful, my friends, it was just a beautiful, exhilarating moment. I mean, we totally brushed over the fact there was another place on my spine with cancer because we were so thrilled in how God had moved that day. When you prayed for God to show me glimpses of His goodness, I definitely didn't expect this!

WHAT'S NEXT?

As I was composing this missive, I received a call from MDA today. They want to do my pre-treatment imaging & simulation tomorrow at 9am followed by an MRI of my T & L spine!! This is huge as it will speed up the process of my stereotactic radiation, kill the cancer and (hopefully) remove my back/hip pain. It's a good thing Alexa and I stopped in Dallas instead of driving all the way home with Chris.

Following simulation, it takes 7-10 days for the radiation team to prepare everything. Once everything is prepped, I will be scheduled for five consecutive days of highly targeted radiation (one day for T2, one day for L2, and three days for hip/pelvis). If you want to know more about stereotactic radiation, please read the June 3 post.

PRAISES

- A surprise encourager to brighten my time at MDA. Love you - Shannon!!
- Confirmation I am where I'm supposed to be, with the docs I need to see, getting the treatments I need for now.
- New possibilities with molecular testing, holistic options and the ability to have stereotactic radiation to all three infected areas.
- Getting to see Dr. Brown a week early with pre-treatment simulation scheduled for tomorrow.
- Simply experiencing a "brighter" day where God's hand was so evident. Seeing prayers being answered right in front of us and being filled with thanksgiving.

PRAYER REQUESTS

- Continued pain relief in hip/pelvis and lower back, especially on the drive down & back to Houston. For the cancer to stay put until it can be radiated.
- Accurate pre-treatment imaging for upcoming radiation.
- For the antibiotics to be effective in removing the infection from my lungs. It's still there.
- For my bone-strengthening shot to be approved, so I can start it ASAP.
- I have started taking the chemo pill, Votrient. Ultimately, we pray this would be effective in preventing the spread of this disease and there would be minimal side effects (the most common are fatigue, liver damage, high blood pressure, diarrhea, headache and loss of pigment to hair).
- God-sized healing. NO MORE RECURRENCE!! NO MORE CANCER!!  Right now, it is running loose in my body and we are only putting out inevitable fires.

"The measure of our love for others can largely be determined by the frequency and earnestness of our prayers for them."  Arthur Pink

Needless to say, my family feels deeply loved!! I have heard from more than one person that he/she has never seen a family more prayed over than us. We don't deserve this love but we are so grateful. Thank you! Thank you for your persistence in praying for us and for every detail on this journey. Most of all, thank you for believing our Father hears us and trusting Him for the answers.