Thursday, April 29, 2010

Newst News

Quick trip to NIH last Sunday and returned on Tuesday. A friend of Tracy's asked if we could get it in writing that we would be back in 3 days. The flight and cab ride to the Children's Inn went without incident, but upon arrival to the Inn, they couldn't find our reservation and as it happened the Inn was full. The on-call social worker approved our first night off the NIH campus at a nearby hotel. Slightly a pain because we had to use a shuttle on a certain schedule and no food was provided like at the Inn. We remained calm and had to remind ourselves that this must be the right place for us on this trip. After we checked in, the rain held off long enough for us to walk to a restaurant which again turned out to be a blessing. It was a local favorite called the Tastee Diner. The manager provided a safe meal(no allergic ingredients) for the girls. The girls appointments went well on Monday. Our room at the hotel was approved another night. Appointments went well Tuesday. Flight home was interesting. Southwest Airlines hosted something called Honor Flight for WWII veterans. It was a full flight including around 70 wheelchairs. By the time we were allowed to pre-board, there was only one row of three seats for us. The entire plane was full of vets. Even with the unexpected, things went smoothly. I enjoyed talking with a couple families I had made a relationship with. We were updated about the progress of the transplant protocol. It passed the scientific review with revision and goes before the IRB(patient safety) around May 10. This one is the hardest to pass and takes the longest to get revised. Please lift this one up. Another disappointment was that Karly did not gain any weight.(didn't lose any either) We had a nutrition consult. She gave us some soluble products that get added to soft foods to add carbohydrates and fat. We will give this a try for the next 4 weeks. We need success in this area particularly before the transplant over the next couple of months. Lift this one up also. Karly has been very allergic to foods she typically could eat. She swelled the first three days home. She's had full body hives twice. Now, she is a little less adventurous when trying foods...she does not want to experience the swelling and hives anymore. Most of the foods we find that she likes she cannot eat anymore. We have been eating mostly fresh fruits, vegetables, and grilled meat. These foods are lo-cal and healthy, but not great for gaining weight. We usually ask Kelsey if she eats this food or that, then we know that Karly can eat it. We are learning. Well as always, we are not in control, and we love it that way. We still have amazing peace.

Saturday, April 24, 2010

Since we've been home...

We've accomplished everything we had hoped. We celebrated Kassidy's 9th birthday family style with pin the tale on the donkey and other games. Then we ventured out to cosmic bowl. Karly was able to attend Disciple Now which is a weekend away with peers and leaders. This weekend she was able to attend her first prom. She looked beautiful, and Zach was quite handsome. Trent went also and says it was F-U-N! Karly, Kelsey, and I prepare today to leave for 3 days. The last time Karly and I left for three days we were gone for 5 months. I am having a hard time packing for 3 days. Kassidy is having a hard time preparing to say goodbye. It will take a while to put this in perspective. I totally trust that whatever will be will be, but it doesn't help me pack only 3 days worth of clothes. Kassidy was supposed to spend Saturday night with a friend, but last night she couldn't get to sleep. She had this uneasy feeling. She didn't want to say goodbye today, but wanted to see me off in the morning. It was easy to change that plan and put her at peace. I thought it was an interesting lesson for her to learn a little about peace and how we get there. Pray for a safe, without a hitch, and peaceful trip.

Sunday, April 18, 2010

Quick Update

The Donor Drive at BSU went very well. We ran out of health forms just before the end. What a great problem to have. We still have health forms and swabs at Dr. Tom Rector's located at 1003 W. McGalliard, Muncie, IN 47303. Please come by if you still want to swab. Karly went to Disciple Now over the weekend. She did well and reconnected with her youth group. Her doctors were pleased with her first blood draw results. Tyler came home this weekend. It is always so awesome to have the whole family together. The sermon today can be found at
The series is based on, "There is power in the story." I think that everyone can relate on some level to these stories. I particularly have been asking people why some deal with crisis better than others. I think the message today explained it very well. Paraphrased by me, but go to sermon: Antecedent:the stuff that takes place in your life before
C:the consequence no matter good or bad
The "B" is what we have been living:BELIEF and HOPE in JESUS.
The "B" makes living the after with the peace the passes all understanding.
I hope that our light is shining before men and that God will use our story to touch the lives of others and bring glory to Himself.

Tuesday, April 13, 2010

Donor Drive

When my dad died in December, mom had all memorial funds directed to Be The Match. She has used these funds to help others join the registry. She first went to Lafayette to help a friend run a drive. She prompted the Religious Studies at Ball State University to run a drive on Friday, April 16, 9-4:00 in the Atrium located in the Arts and Journalism Building. Kelsey, Karly, and I plan on attending in the afternoon. We talked with our transplant doctor just before coming home. His dream, but our hope is to find that one excellent donor for both girls.

Karly is experiencing a greater allergic reaction to foods she would normally eat. This is unexpected. It just makes her more like Kelsey. Kelsey has always been much more sensitive and thus restrictive with foods. Karly has been able to tolerate these foods a little, but not now. I am really having to be a lot more careful with ingredients than ever before. I think this has something to do with her immunities being low, first from Chemo and also from the Dock 8. They gave her a double dose of IVIG before we came home hoping it would last 4 weeks when we return. I'm sure it will be evaluated upon our return.

We are having an awesome time just being together!

Saturday, April 10, 2010

Home a Week

We arrived home last Saturday. We were blessed to spend Sat. and Sun. with the whole family. Tyler came home to see Karly. Unfortunately, Karly woke up very early Sunday morning with a bad headache, slight fever, and vomited. Tyler wanted to spend his day with Karly so stayed home from Easter service to be with her. It was probably from a culmination of traveling, chemo that week, a double dose of IVIG, and just being worn out. She is doing much better. Everyday is a new day. I was finally able to get her moved into her room. She has a loft bed and is unable to climb up and down. We moved her mattress to the floor for now. There have been a few days we went out shopping...for a prom dress, shoes, and necessities. We do a little bit at a time. She usually comes home to nap afterwards. Life is not feeling normal, but it is good. My home is getting a clean sweep. I'm glad there is a neighborhood garage sale coming up. I am simplifying the home the best I can. It is really like we are starting anew. God has gotten rid of a lot of junk from my life. My home is just following suit. I guess what I'm saying is that I am renewing the scripture in my life that says, "Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!" 2 Corinthians 5:17.

I took Kelsey to the airport on Wednesday. She got refueled(IVIG). Dermatology is repeating some meds she did in the past. I know Kelsey holds no hope for these, but there is always hope. Kelsey wears duct tape on her fingers which helps her to use them, but the pain is present always. When she wears the duct tape it makes the virus grow over her fingernails causing more problems. If she doesn't wear the duct tape, the virus grows like a cauliflower. Using her fingers is even more painful because they get caught, tear, crack, and bleed more. Her HOPE is the stem cell transplant. There will be another Be The Match donor drive at Ball State University's Atrium on Friday, April 16 from 10-4. Lamentations 3:19-22 says, "I remember my affliction and my wandering, the bitterness and the gail. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope; Because of the Lord's great love we are not consumed." We have wandered throughout Kelsey's life going to and fro, to this doctor or that service. We too have been downcast, but not bitter. We have always trusted that God would heal her in His timing, and we still hold this to be true. We also know that this may mean in her death she would be in a new glorified body. We accept that. There was a spell that I couldn't pray for her healing knowing that it could mean He would take her home, but how selfish is that. I often reflect on the story about Abraham and Isaac in Genesis 22. Would I have the faith needed to sacrifice my child if God asked? Abraham's faith was made complete. I think God would give me the faith I'd need if He asked. We're still standing strong!

Friday, April 2, 2010

More Ocean City

The kids cracked me up with this "game". We had so many laughs. The House By The Sea blessed us with many opportunities of swimming, eating out, and game playing. Karly's favorite outing was Bumper Cars. We were able to play it for a very long time, actually too long, because Dad and Trent conspired together to bump us good. We had such a happy time. Laughter is the best medicine and boy did we laugh.

For Real!

We are coming home for real on Saturday. It doesn't seem like we've been here for 5 months. People cared for us in so many ways and made it so much easier than it would have been without any of you. We made a final walk to the Clinical Center to meet with our docs and make plans for our return. We stopped by the 1NW pediatric floor to say thanks and good-bye to some of our favorite nurses and friends still on the floor. We made reservations at the Inn for our return. We dispersed our food to another family we met. We did laundry, packed, and finally feel ready to leave tomorrow. After a conversation with a dear friend of mine last night, she shared something she learned as an oversees missionary. She said that people will ask how you are or what you learned, but will tune out after a certain point. She said to pick 3 words that bullet point the highlights. Karly and I thought about it today. I would say my words are grateful, peaceful, and closer to God. I wanted to say emotional but the emotions come from the way people loved us, and I am so grateful(thankful) that I become overwhelmed with emotions. It is much easier to write about than talk about. I've had a peace throughout this period that only God can give. It comes from living each day listening to Him and this had created a closer relationship with Him. Karly's three words are loved, patience, and thankfulness. We have a lot to look forward to just this month including celebrating Easter with our family and friends, Kassidy's 9th birthday, Discipleship Now, and the Prom. May You All Have a Blessed Easter!