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Tuesday, October 8, 2013

MDA update

Well, we just arrived home after three follow-up appts yesterday at MDA. It's hard to believe it's been over three weeks since I slept in my Cal King at home. I definitely didn't expect I'd be gone that long, but I am so grateful for the care I received from my parents in Dallas before and after my surgery (as well as all the help with Lil' A). I don't know what I'd do without them!! They have been by my side since day one of my diagnosis - cheering, praying and serving.

Chris' mom, Karen, flew into Houston last night to help us out this week as we transition back home. I am also grateful for her willingness to travel from CA and serve us in this way until I feel confident I can function more independently.

The appointments concerning my post-op recovery went very well. Dr. Sharaf (my plastic surgeon) was pleased with how my incision is healing and I'm officially drain-less!! I didn't look but Chris said he pulled about 6" of tubing out of my arm. Although I feared what the sensation would feel like, it didn't bother me a bit. I am so thankful for your prayers in that regard. I knew the moment it was finished it was because of your prayers that it went so smoothly. It is thrilling to be free from the tubing. It was delicately stitched into my skin but there wasn't a day it didn't get caught on my clothing, a chair, my elbow, etc . . . and goodness, it would smart! So I'm very thankful to shower without taping the drain to my arm or safety pinning it to a pillow at night. I know my mom is also thankful she doesn't have to strip the drain (draining the fluid from the tubing) twice a day. Hooray!!

On another bright note, Dr. Lin (orthopedic surgeon) was pleasantly surprised by the progress of the movement of my fingers and wrist. He was also pleased with the reduction in swelling and the healing of my incision. He doesn't want me to pursue hand therapy for another four weeks as there is much healing to be done inside and outside my arm. The best thing about this appt was seeing Dr. Lin smile (quite a bit too). He seemed to be as satisfied and relieved with the outcome of my surgery as much as I was :) We thank God for these gifted surgeons!! There isn't a day that goes by now that I don't look down at my fingers, numb or not, and say, "Thank you Lord."

Both Sharaf and Lin want me to take it easy the next month. My focus is to be on healing. I am supposed to keep my arm elevated as much as possible to keep fluid from collecting in my arm and gently work on finger/hand exercises. They both want my incision and transferred tendons to heal, and it will just take time.

Those two appointments were super encouraging; however, my appointment with Dr. B ended my day at MDA on a sober note. When a doc starts his conversation with, "Well, you are very difficult to treat now," you know it's gonna be a doozy of an appt. He proceeded to explain different chemotherapy options (none with statistically high probabilities of success for epithelioid Sarcoma). We knew there wasn't much out there to treat me but it is always hard to hear that news from the doc you hoped could provide some answers.

The other issue is the primary tumor in my arm which served as the baseline for measuring the effectiveness of chemotherapy is now gone. (I for one am SUPER thankful it is gone but it's absence does present problems if you want a measuring stick.)

So not only do we not have a future treatment plan that's proven effective, but we also don't have a way to measure it's effectiveness. (Although, I still have cancer in my C7 vertebrae that is measurable, it won't reveal immediate results like the soft tissue tumor in my arm would. It normally takes several months to measure treatment effectiveness in bone.) Therefore, the difficulty is deciding on the best treatment option while figuring out how to measure it without filling my body full of several rounds of toxins that could very well be useless in killing the cancer.

I suppose one would say this it quite a conundrum. Definitely not one I am thrilled to face or report, but we are asking everyone to pray for God's wisdom (not man's) for what our next steps for treatment should be. We have been seriously considering alternative/holistic therapies for quite a while now. (Bonus: they don't include poison.)

Regardless of chemotherapy or alkaline diets, we are looking to the Great Physician for healing. He has performed miracles and bucked statistics before. We know, if He chooses, He could do the same thing in my body now. And that's exactly what we're pleading with Him to do.

So what next? The plan for now is to focus on healing for the next three to four weeks. Then, we'll return for follow-up appts at MDA to assess healing and discuss treatment opts again (and decide if we want to pursue any). I will also be undergoing another PET scan, CT scan of my chest, and MRI of my arm to make sure the cancer hasn't spread.

I don't get warm & fuzzy writing about my life anymore much less thinking about the reality of this ridiculous cancer. It is easy to feel hopeless at MDA. I do much better outside of that environment where I am surrounded by believing, encouraging family/friends and able to better focus my heart on Jesus and the Truth I receive from His Word. It's there I'm reminded He is over all of this. He always has been and always will be. Regardless of how I feel, of what ifs and whys, He has a purpose and a plan and it won't be thwarted - metastasized rare cancer or not. It isn't my plan (that's for sure), but I know He is working in my heart to submit to and trust His plan for my life even if it weren't the one I'd have chosen. I will continue to choose to believe that, "Those who hope in me will not be disappointed." Isaiah 49:23.

My dear prayer warriors, we would ask you to pray for . . .

--Wisdom as we seek the Lord for the next steps.
--Healing of my arm - incision and all.
--Regained functionality of my fingers.
--Containment & death to the cancer in my C7 vertebrae and a cancer-free arm. No more cancer anywhere!!
--Fun! With no scheduled treatments for a month, we are considering a getaway (that doesn't include a trip to MDA).


  1. Dearest Kelsey and Kennedys: Thanks so much for the update - once again. Have been wondering how your appointments went. So glad the healing of your arm is going well and the drain tube is gone. Enoy the relaxation and calm of the next month or so. Will pray that the Lord will make obvious to you where to go next. Blessings. Sharl and Doug taylor

  2. Kelsey, Continued prayers for you, your family, all of your doctors. You are so amazing and positive even with the uncertainties. Thank you for sharing your personal journey. I hope you do get to get away and enjoy this month and let God take care of you. God bless you. Judy Voth

  3. Wow Kelsey. I Thank you for sharing even though I know you prolly don't always want to be the spokesperson. I can see-if only a glimpse from this blog-so much growth toward God. Why this way to sanctification? I dunno. I have still been learning contentment with being here instead of France. As of now, I am the most content I have been in a long long time. Why? Focus. My focus has changed back to Him and Him alone. Yielding daily. Today, I yelled at my children in the old parking lot at the BSU at OU. Both of them were crying because I don't usually fly off the handle. I haven't slept much this whole summer. I average about 3-5hrs per night every night since May. It has affected my daytime somewhat and obviously my treating of my kiddos. I had to apologise several times yesterday. It was hard. My pride was so big! Ahhhh!!! Anyway, I know that this is bitty compared to what you are going thru, but, I just wanted to share. Nadia will be 7 at the end of December and Sebastien is 4.5 years old. Please get away this month! Praying and praising God for the works He has prepared for you (all) since eternity past. Happy to see an inkling of HIs handiwork. love you guys