Hey Everyone(does this sound like an easterner),
I've been at the National Institutes of Health since November 5. It was a tough time not knowing what was wrong with Karly, watching her suffer in pain, going through the tests, and watching her loose her right facial movements. I spent a lot of Internet time looking for answers, and ultimately that still small voice was telling me something serious was happening. We didn't want to look there or think that this was something more than a virus, but as her degree of symptoms increased the more obvious it became that it was something serious. Through the instinct of knowing my child and God being in control, I was able to find and work with our Dr. to discover that missing piece of the puzzle. She was not presenting with any of the normal signs of cancer at that time, yet we were led to look in her abdominal region(mind you..no symptoms in her abdomen) where the large masses in her kidney were found. She has Diffuse Large B-cell Lymphoma. Her type of cancer is aggressive, yet the type of B-cell affected is the good kind to treat. Although this is not a diagnosis we ever thought we would be facing with Karly, we will stay strong in faith and trust Jesus. As her team of lymphoma doctors say, "She is receiving the state of the art treatment for lymphoma." They have every confidence in a good prognosis. They have never treated someone with a Dock 8 mutation, however have treated rare immunocompromised patients with a great outcome. Her cancer is stage 4 because of the locations in which it was found, namely brain, kidney, bone, and along the mandibular nerve. She has completed her first 5 days of systemic chemotherapy, and two chemo treatments in her spinal fluid. She will be getting an Ommaya Reservoir, hopefully, on Dec. 9 so we need pray for her counts to be up so we can proceed with this procedure. She will continue a very aggressive regime for 4 months. We will be staying close to NIH for all her medical care. Our plan is to live with my sister, Debbie, about 1 hour south of NIH. Although she is having the state of the art treatment, ultimately her healing will come from God. Prayer will be the success for her treatment for by His stripes we are healed. Our friends, family, and even strangers have been supporting us as we climb this mountain. Our faith can help us move mountains.
Jeff and Zach Beeson came on Nov. 21 to keep us company. They came bearing a plethora of gifts and provided good food, great company, and plenty of distraction. We were able to celebrate Zach's 16th birthday on Monday, Nov. 23. His dad left on Monday, and Zach stayed and traveled back to Indiana with my family on Sunday, Nov. 29.
I was excited to have Kelsey and Tyler join Karly and I on Nov. 23. Karly perked up and loves the distractions. Then, on Nov. 25(my birthday), the rest of the family joined us at NIH. We were all able to go to the Gilley home(my sister's house) for Thanksgiving. Karly hasn't been able to sit up(lumbar tear) since Nov.25, but she enjoyed the awesome tasting food. She has been given a pain button which allows for better pain relief until her body heals the tear or it can be fixed.
Kelsey came in to NIH with pneumonia. She has been treated for this and tested for many other viruses and bacteria. She had 3 skin biopsies. They are using these to confirm molluscum on her skin so she can start a new protocol and new drug today. Everyone here is quite excited about the outcome of this drug including Kelsey. She will need to return here every two weeks for follow-up which includes bloodwork, pictures, curretage, and taking the drug. We are still waiting for the outcome of the donor drive, but we trust God with the timing of this transplant. Hopefully Kelsey will be returning to Muncie on Saturday, Dec. 5. By they way this is Tyler's 20th birthday and my sister, Angie, is holding a benefit concert and donor drive for the girls on that day. Great birthday present for Tyler. Yesterday, she had a power port put in her chest and an endoscopy where they took several biopsies. The GI doctor would like her to join his protocol to work on diagnosis and treatment of Eosinophilia type disorders. She's still thinking on that one.
My friend, Pam Cullison, came on Monday, Nov. 30 from Evansville, IN. She is full of life, loves to play games(extremely competitive), adventurous, and decorated Karly's room with a Christmas tree and other festive lights and displays. We will all be getting pedicures, also. She brings a lively spirit and laughter to both girls. I love having my friend here to talk with and cry with and laugh with. Thanks Pam!
Karly has a van load of volleyball girls coming Friday for the weekend. The parents of one of the girls are driving from Indiana. Karly is very excited about having girlfriends around. More on that after the fact.
All in all we are doing well, people are helping at home which helps me not worry about my family at home as much. Our spirits are hopeful, we are courageous, and the fight is on. Thanks be to God and to His people!
Blessings and heartfelt thanks,