Grandma Says...

I am impressed with the employees at the Children's Inn where I am staying in Karly and Tammy's room. They are so nice and the hospital staff is also so kind and nice to everyone. It is the place to be if you are sick. The picture on the left is of the Chocolate Seder event. Today's event at the Inn was a trip to the Air and Space Museum and Planetarium show and a meal at McDonald's. We saw the beautiful Cherry Blossoms all around the Tidal Basin going and returning. I've enjoyed my time with Karly and Tammy. God is good all the time.
Love,
Grandma Flo

WOW!

We were treated last night to a fantastic meal at Mancini's. It was a local Italian restaurant. We enjoyed some awesome appetizers, entrees, and dessert. All were stuffed and pleasantly plump after that experience. We battled through another night of vicious card playing. Kassidy was quite victorious.

Love,
Mom

Ocean City

We made it. She's out and about. Weather is cold, but we are enjoying our time together. We checked out the area on Tuesday, saw a movie, played cards, and already have had two of the meals Karly requested I make...Shrimp Scampi and Lasagna. I'm not sure what today will look like, but it is sunny and cold. Karly isn't awake yet. God is faithful!
Love,
Mom

Packing!

I've been busy tracking down boxes for our stuff to make it home. Karly's room is looking bare. She will be discharged on Monday. They are pulling the PICC line tomorrow. When we return from our Ocean City week, she will get her Ommaya chemo on Monday, CT scans on Tuesday, PET scan on Wednesday, clinic visit which sets up plans on Thursday, and hopefully a flight home on Friday or Saturday. We will need to return every 4 weeks until the end of May.

We met with our transplant doctor yesterday. He gave us a tentative plan based on what we sort of know now. The protocol still needs to be approved, but it is getting close...maybe 2 more months...which would mean June. His dream AND our hope is that we still find that perfect match. If no match is found, we will use a double chord transplant. He wants to wait to do Kelsey until we see how things go for Karly. He said they always learn more from the first one which helps the second one and so forth. This is the first DOCK8 transplant in the USA. They have done a lot of transplants both for cancer and immune diseases.

Kelsey, Karly, and I missed another family function this weekend. Trent is on the FIRST Robotics Team 1720. The regional is held in Lafayette. The team made it to the quarterfinals which means they were picked to play on a team in the finals. This is great. They didn't make it out of that round, however, they had a very good showing and played a good game. Trent was the driver again this year, and as I hear it, he drove a mean robot! I hope to see pictures. They should be leaving Lafayette in the next several hours to make their way to Bethesda, MD.

I'm feeling a bit overwhelmed with all the things that need to done tomorrow. Pray for peace, patience, and understanding through it all.
Love,
Mom

Tyler's Gone, Kelsey's Here!

We had a busy morning on Friday. Aunt Debbie and Deana picked us up. We dropped Deana off at her All-County Junior Choir at Frederick. The rest of us ate at Cracker Barrel. Karly had been wanting biscuits and jam. She was happy. We arrived back to NIH with enough time for Tyler to get a nap and sufficiently say good-bye to Karly. Aunt Debbie returned Sunday for lunch. Karly's muscles are extremely tight and weak. It was difficult for her to walk. I had to highly motivate her to go out with us. Another new found joy of Karly's is Steamed Crab Legs. We had to supply that craving at Red Lobster for lunch. We proceeded to Walt Whitman High School in Bethesda where we enjoyed the concert of voices. Deana is in the center of the photo. Karly was tired from all the activity, but it is always good to get her up and moving. Monday she became neutropenic, and Tuesday acquired the fever. She is on the big dog antibiotics until her counts recover. Kelsey arrived Wednesday. She is having a difficult time...she needs a miracle ...she needs a match. Yesterday I was reading a devotional that said, "Come to Me for understanding, since I know you far better than you know yourself. I comprehend you in all your complexity." Kelsey is complex. "Allow the Light of My healing Presence to shine into the deepest recesses of your being----cleansing, healing, refreshing, and renewing you." What else is there but to rest in His Light? As we are approaching our respite week, the excitement of seeing each other is growing. Also, as we approach our departure from NIH, there is much to do in preparation for leaving. I need to pack a lot of stuff to send home with Tracy. Arrangements for Karly's home care needs to be researched, planned, and arranged. She is still under 100 pounds, and unable to do much of what she used to. She still sees double, her upper lip doesn't work properly, and cannot run or jump. She very much is still Karly, so treat her like you used to. She is funny, witty, and wise. She has been through a major life crisis, but what does that mean? I don't know, and will learn daily how to walk through this time. Thank you to all who are walking this time with us.
Love,
Mom

Tyler's Still Here!

After Tyler sat around the hospital room Sunday and Monday, he was ready for a change. He took the metro and met up with some Wabash friends downtown DC, wondered around, and spent the night with them. He rendezvoued with his Uncle Ridge for a tour of Andrews Air Force Base on Tuesday. We went to the Inn for dinner Tuesday and Wednesday. Also on Wednesday was the Art Contest Party. Karly and Kelsey entered pieces. Karly won an honorable mention award. She will be able to spend her gift card on clothes that will fit. She hasn't felt particularly well the last few days, but she has finished her 6th Cycle! She will get scans April 1 with hopes to go home for awhile. Tyler joined me in the playroom for an art session today, then we all went to the Relaxation Room. Tyler thought it was an interesting experience. Tomorrow, Aunt Debbie and Deana will be picking us up on their way to Frederick. Deana was 1 of the 2 from her county that made the All-County Choir that performs in Bethesda on Sunday. She will be jailed for the weekend while all members come together to work on the pieces. Anyway, Karly had been craving Cracker Barrel biscuits and strawberry jam so her wish will come true tomorrow. After lunch, Debbie will return us to NIH for Tyler to get to the airport for his flight back to Indiana. This may be Karly's last outing for a week since she goes neutropenic sometime over the weekend. If for some reason her counts haven't dropped too far, then she will get to see Deana perform on Sunday afternoon. Still no news about a match. Another drive was happening today in Lafayette. My mom drove up to help out. We are counting down the days until we are together as a family...10 days...to our respite week. It is still hard to comprehend that we've reached this point. Once the scans clear her, she will be officially in remission awaiting the stem cell transplant. Praise God!
Love,
Mom

Tyler's Here!

Karly was excited to see her brother parade into her room Friday night. Her Uncle Ridge graciously picked him up at BWI and transported him here safely. Saturday morning before we went to Montgomery Mall on the Children's Inn trip, we Skyped home where Karly and Tyler entertained the family. The picture below shows them rapping to the song "Lonely". The picture above shows Tyler modeling one of Karly's wigs. Tyler wheeled Karly around the mall in her wheelchair for 3 hours. The rest of the evening was uneventful with both taking naps. The weather here is beautiful...sunny and 50's. I hope to get them out for a walk around campus. Tyler was so sure he would win at Mancala, but Karly has beat him three times.

Karly made it through the bone biopsy and busy week. She is still gaining weight...102 pounds today. Preliminary report on biopsy is clear of lymphoma but waiting on the final report next week. After she finishes this cycle, she will get scans of areas where lymphoma was. We will hopefully make plans for leaving here within the month. She will return every 4 weeks for Ommaya chemo until end of May. Talking is still in the process for the stem cell transplant. I hope to get home for awhile before this starts. All in all everything is good.

Kelsey's liver function has finally returned to almost normal levels. She returns here on March 17 to monitor her septum biopsy area and keep a watchful eye on her. She will stay with us until the end of March. The rest of the family joins us here March 21 on Spring Break at our respite week in Ocean City, MD. Grandma is coming with them to visit Gilley family(my sister and family), then see us at the hospital for a few days. It will be an eventful March with visits and medical plans.

We are doing well spiritually, remaining hopeful and positive. As always, no words can express how grateful we are for the help, encouragement, and active participation we've received during this time, BUT I am and we are so humbly blessed to have you in our lives. We know that we are not through this time anytime soon, but time is passing quickly for us; we hope and pray that you will continue to walk with us. Praise God!

Love,
Mom

Hurry up and wait

My dad, a WW2 veteran, used to use the term, "hurry up and wait" when he was referring to the frustrations of army life. I so can relate! When the donor drive was fast approaching, I was in such a hurry to see that donor show up. Well, as time passes I realize that our donor drive was more then a fast track to my girls finding a donor. It was a common good thing that is going to benefit possibly hundreds of lives. So we hurry up and wait. Then, Kelsey got on this trial drug and I couldn't wait to see the miraculous result that could happen. Due to unforeseen complications with her lungs, Hurry up and wait again. Now we get to the sixth round of chemo with Karly and again I am so excited that possibly this may be the last. Just this much more, just that last thing, just a bit more reaction. You guessed it, Hurry up and wait. Through it all the lesson is clear. You know Noah, was sitting in a desert for 100 years with no rain building an ocean liner. Do you suppose we need these lessons in patience? It is tough when it is personal. It is tough because of your faith. You know that you know what your creator God can do. You are sure that Jesus' touch can instantly cure. Up until just now, I never thought about the fact that perhaps there were thousands more healed that were never written about in the Bible because of , Hurry up and wait.
Love,
Dad

Pass Weekend!

We arrived at my sister Debbie's house Friday afternoon where we signed cousin Reid's cast and said "Hi" to Hannah, Rachel, Deana, and Ridge. Without too much thought, we proceeded to Red Lobster. One of the goals for the weekend was put weight on Karly.
We were entertained by a Bully Lobster. I don't know anything about Lobster Hierarchy, but there was a lobster that kept all other lobsters pinned to the sides of the tank. It kept us laughing for hours. Karly tried Steamed Snow Crab legs for the first time and highly recommends them. She also enjoyed jumbo grilled shrimp. The girls had no trouble entertaining themselves. Saturday was Spa Day. The girls were treated to a back massage, then each received a pedicure. Deana got her hair cut while Karly got a manicure. The moms enjoyed this as well! Karly had requested that I fix her a corned beef, cabbage, and potato supper with Bonnie Butter Cake which of course she got. I still know how to cook after 4 months. We chilled the rest of the evening. Sunday we went to Deana's favorite restaurant and saw Avatar. We had so much fun being spoiled. Karly walked the long flight of stairs to Deana's room many times. I caught her gazing up them Saturday night in contemplation of the trek and laughed at her. I had the nurse weigh her when we returned. She had gained 2 pounds. YEAH! The plans this week include the CNS(Central Nervous System) chemo in the Ommaya, anesthesiology consult, bone biopsy, and 6th Cycle Systemic Chemo. She is doing so well. Her brother, Tyler, comes to visit Friday during his spring break for a week. This will cause quite a diversion.

Kelsey had a not so fun week last week. While we like rejoicing in the good news we get, the yo-yo effect is ever so present. The hope of the study drug has been halted. Although we know it is for the good of her organs, this leaves her stuck in her pain and current situation with no hope of changing things until the transplant. We would just love to hear that they have found a donor, but none found yet. The other reality is that if no donor is found, the double cord blood would be used but only has enough cells for 1 transplant leaving one to wait. It is looking like Karly would be the priority because she already has the cancer, and Kelsey is pre-cancerous. We still keep trusting God in whatever is to come. In the devotional I was reading the other day, it says that our future looks uncertain and feels flimsy-even precarious. Secret things belong to the Lord, and future things are secret things. My job is to keep my eyes on the Lord, letting Him lead me in this journey, trusting Him to open up the way to go. Only by fixing my eyes on Him will we be able to run with endurance the race that is set before us without stumbling or falling.

Thanks to all of you who are praying, caring, and loving us through this race.
Love,
Mom