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Monday, November 4, 2013

MDA Marathon

To give you a feeling for the eventfulness of the day, we left the house at 6:30 this morning and got back at 7:00 (and we were not spending the whole time in traffic). Here's a rundown of our day.

Kelsey started off with a CT scan and was actually finished with the scan before she was even scheduled to start it. We found out there was nothing remarkable about the CT scan. There is some fluid in her lungs which appears to be from an infection (Kelsey has had a cough for a little over a week). It was recommended to continue follow-up on her lungs as this is a common place for Epithelioid Sarcoma to occur. In the meantime, Kels was given an antibiotic to hopefully remove the perceived infection. We then had a bit of down time before we headed off to meet with a nurse and doctor in Integrative Medicine.

Our appointment there was good - it was nice to hear a more holistic approach to fighting cancer. We spent some time talking with Dr. Lee's nurse. She had many good ideas about nutrition, sharing some of the ways she seeks to get vitamins through food and minimize sugar in her diet. In speaking with Dr. Lee, he had some concerns about some of the supplements we had been taking, saying he has a conservative approach (basically meaning that there has to be peer-reviewed evidence of its benefit). He thought it would be worthwhile (after hearing the results of the PET scan) to get a physical therapist familiar in treating cancer patients to help with some stretches and exercises to strengthen Kelsey's back and core. He also recommended she do acupuncture to relieve some of the pain in her back and hip. He said that even if there were cancer in those areas, there is no interference with treatment from acupuncture. He also recommended protein powder to get Kelsey's weight up a bit, and he ordered a more thorough blood work-up to better understand her deficiencies and how to supplement.

We then raced off to her PET scan (it's in another building) where Kels was injected with radioactive dye and left alone for an hour. During the scan, she was in quite a bit of pain while lying on her back for the scan which took about 50 minutes. In meeting with Dr. Benjamin, we learned the MRI results of her hip were confirmed by the PET scan - cancer in her left hip (near where her femur meets the hip) and pelvis. The cancer seems to be creating a fracture in that area. In addition, the concern we have had since the initial PET, where there was an area in her lower back that lit up, was confirmed to be cancer in her L2 vertebrae.

We then hurried back to the other building to her appointments with Dr. Benjamin and Dr. Lin. We ended up meeting with Dr. Lin first - he was pleased with her progress and recommended she continue to do passive flexing and stretching of her fingers. He also wrote up a prescription for her to start seeing an occupational therapist for her hand. Another praise, no cancer in her forearm.

Our meeting with Dr. Benjamin, although it did bring some unwelcome news, was positive. Unfortunately, the cancer has spread to her L2 vertebrae as well as her hip and pelvis. His recommendation is to meet with Dr. Brown (who did the stereotactic spine radiation for Kelsey's C7 vertebrae) to see how the cancer in the bone may be addressed, to start taking Votrient (a drug which reduces blood flow to fast growing cells - seeking to kill them off), and to get a monthly shot to help strengthen her bones.

Definitely a lot of information! We continue to covet your prayers and thank those of you who petitioned for us throughout the day. Although we did not see miraculous healing, we saw God's hand at work. A more compassionate Dr. Benjamin. Every appointment was on time with very sweet & upbeat folks caring for Kels. No super surprising news (we had sort of anticipated cancer in Kels' spine). We have some direction for treatment & were encouraged when we were able to speak to someone with a more holistic approach. Kels wasn't overwhelmed (although saddened) with the news & felt peace most of the day.

- Please pray for continued direction. Traditional medicine? Alternative treatment? Holistic approach? Some combination of all of these things?

- Pray the antibiotic works to remove the mysterious spots on Kels' lungs.

- Pray for effective treatment options for Kelsey's hip & ability to meet with Dr. Brown this week. Benjamin seemed reluctant to believe stereotactic radiation would work on her hip. Broad spectrum radiation is not proven to be effective for Kels' cancer but Dr. B thought even that might be helpful. We are praying for stereotactic which is 90% effective for radiation resistant tumors. By the way, Kels' C7 continues to look good - praise The Lord!

- No more recurrence in Kels' body - no more in her arm, her C7 and in any other bone or soft tissue.

- If we chose Votrient (the pill,) that it would work in preventing spread of any tumor. Lord, please stop this madness!

- For pain relief in Kels' back, left hip & left side. She said she feels like an old woman & struggles to move much at all. This is discouraging as she has felt fairly good and the pain in her forearm has been removed. She really wants to exercise again.

- Continued prayers for upcoming appointments at MDA this week.

** Kels here. Again, I was overwhelmed by your incredible support via texts, emails and FB messages. Please don't be offended if I haven't replied to you. There was so much love sent my way today! Above all, thank you for your continued prayer support. I definitely needed it and felt it.

It is said, Sarcoma Is the "orphan" of all cancers as it comprises 1% of all cancers. It is ridiculously under-funded, and my diagnosis, Epithelioid Sarcoma, occurs in one of every 10 million cancer diagnoses. It is INCREDIBLY, INCREDIBLY rare!! I think my likelihood of winning the lottery is higher. That's discouraging to my heart and my future (the rare cancer not the lottery comment). That being said, there is some hope for treatment for this metastatic disease but nothing targeted or proven to be statistically effective. No clinical trials on the horizon either. Therefore, we need your prayers. We need a great big God to do the healing and get the glory. We're thankful we have both.


  1. Praying as you sift through all of this that God would give you clear direction and overwhelming peace with whatever you decide.
    Eva said she told her class about you on Sunday and they all prayed for you. Yesterday after I put liberty down for a nap I could hear her thanking God for you and all your family. I found her today at the front door trying o open it. She said she wanted Alexa to "mum" to her house...evidently she thought she would just open the door and find her waiting there. :) we think of you constantly. You are dearly loved!!

  2. love you kelsey and praying for you every day!!!!

  3. Saw your blog through my cousin who I believe went to school with you. I haven't been able to stop thinking about you and your family! I'm so glad your experience with Dr. Sourpants went better yesterday! Praying ultimately for your complete healing, but in the meantime clarity for your treatment plan and healing for the spots in your lungs. Also sending prayers for peace, comfort and understanding from the Ultimate Healer.

  4. Thinking and praying for you everyday sweet Kelsey! Thankful you have this blog so we can pray specifically for these things- Love You!

    Jen Cochell

  5. Dear Chris, Kelseyand family: Want to thank you both so much for the post. I had an appointment with my onocology dr today and he said that you are in the best place for treatment that he knew. (MDA) Will continue our prayers for your COMPLETE healing; direction for your treatment; and how the power and peace to see every day as a gift that you can cherish!!!!! We love you. Sharl and Doug Taylor

  6. Just thinking about you. Praying, praying, praying for you and Chris and that sweet girl.

  7. I keep praying...You have so many praying and thinking of you Kels!....Hang in there and hold comfort in your family and friends. You have so many amazing people cheering you on and encouraging you! God is so proud of you and strength, even in your weakest hours, you are an amazing example of faith and love. Jaree

  8. Was saddened when we returned from our trip to read that that cancer is still causing havoc in your body. I'm praying God gives you times when you can sense that He is in control of the situation and that He loves you very much. I pray for less pain, good test results, wisdom in choosing further treatments, safety in travel, priceless times of joy and laughter with Alexa, and the miracle of complete healing. Thank you for taking the time to write your honest thoughts and sharing them with all of us. You are loved by so many. In this season of Thanksgiving, we can be thankful that our God is bigger than anything the devil or the world can throw at us. The Word promises us many things while going through life's difficulties. So I am claiming these promises from the Bible be poured out on you right now: hope...comfort...peace that passes all understanding...being drawn closer to Him...strength...lighter burden...a quiet spirit...hedge of protection from the 'Evil
    One'...fellowship of Christian prayer warriors...and on the list goes. Love, Sharon

  9. Kelsey and family - I pray daily for you all. Thanks for keeping us (those that love you) posted on your journey. I am praying for complete healing.
    Linda Oliver

  10. Kelsey. THinking about you today. Praying for you. **big hug!** Love, Kendra