Wednesday & Thursday

So Kelsey finished her pulmonary function test and bone marrow biopsy with no major events. In fact, she had mentioned to the doctor who was giving her the sedation for the biopsy that she had remembered her other procedures and really didn't want to know about this one. He gave her a bit more sedation than she had before with just the result she was after. She completely doesn't remember anything. I keep relating different things she said or did, and she laughs because she is so true to nature even when she is sedated. Yes, we still can laugh. Today we completed the two hour radiation oncology consult. Nothing we didn't expect. She had to drink a bunch of barium and get injected with the dye. She felt some tightness in her chest and has felt pretty sickly since then. She had to go to her dental appointment which we moved along quickly to get her back to her room. She just wants to do nothing for awhile. It is a very rainy dreary day, so glad to not have to be out in it. All that's left is more blood draws, see the surgeon about her finger, and sign the consent. Whew! Almost there. We had some good news from the transplant doctor. He has found a 5 out of 6 cord blood match which he is excited about. They are still running the HLA testing on it, but it is looking good. The nurses relate that once you are his patient, he hovers and pays close attention to you. That's good to know. They let us rearranged her transplant room, a new TV was installed(the other one was screwy), it already has a frig, and it will have a microwave. Our suite is about ready. Now, we just need the date.
Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.
We indeed are praising Him.
Love,
Mom

Tuesday is over

Karly finished her appointments, Skyped her Latin class from the Inn, and has safely arrived home. All is well with her.

Kelsey completed her eye, bone density, and screening appointments today. We have a preliminary result from the Endocrine test. She does not produce the hormone ACTH mostly likely from the long term steroid usage. Cannot really do anything right now, but maybe after the transplant. She should be seeing a surgeon this week to assess her infected finger. It is too late to harvest her eggs, so pray the chemo and radiation don't make her infertile. At least we know that the process takes 2-3 months, so we can get started with Karly. Dr. Hickstein has been very thorough. We have heard only great things about him and his team...Ashley, Zetta, Joan, Anna, and Dr. Fry. His whole team has been given the highest praises. Tomorrow she starts with a pulmonary test and then a bone marrow biopsy. She is just so willing to help people learn how to deal with this disease.

I finally met a Dock 8 family from Pakistan living in Kansas. They have just arrived to NIH this week from a referral from their hometown dermatologist. They have 7 children, 3 with Dock 8. The three with Dock 8 are 6 years old and younger. Because their children are not presenting with the more severe symptoms, they don't see a need to transplant. They will hopefully be able to meet Kelsey in the next couple of days, so she can explain the progression of the disease, and they can see it. She started out like their children, so I hope she can relate information in a way they can understand. I guess we are considered ambassadors of Dock 8. Please pray that as we try to relate what we know to others, the love, mercy, grace, and faith of Jesus comes through.

I've had meals at the Inn the last three nights. I've been able to sleep. I even had a 15 minute seated massage tonight. Sounds like the good life, doesn't it. All blessings, for sure. Thanks for the prayers that are sustaining us.
Love,
Mom

Monday's over

Our flight arrived late Sunday night, cab driver was late, luggage all arrived, rainy night, horrible cab ride, bad room assigned, but got re-assigned to better room. We seriously thought we were going to get stranded along the highway...that is how bad the cab was. It sputtered and shook all the way to the Inn. We did arrive safe and had a room. Kelsey got admitted to the hospital Sunday night. She was up until 3:00am waiting on things to happen. Then, Monday morning she had 41 tubes of blood withdrawn, couldn't eat anything until after the endocrine testing, and couldn't take a shower. Everything was accomplished that needed to done on Monday. She has a finger that has been giving her fits of infection that is now becoming uncontrollable. After consults from the Dermatology dept., it looks like they are trying to find a plastic surgeon who will laser the wart and remove the nail to prevent infection during the transplant. They are still discussing the best treatments, length, and regime before her transplant, so we don't know when she will be coming home or going back. We are hopeful that she will be able to come home this weekend for a few days before going back. The target date for the transplant admission is October 12. Her spirits are good!

Karly had CT scans of chest, abdomen, and pelvis, blood withdrawn, IVIG, and an Ear, Nose, and Throat consult where they scoped her throat. Everything is looking pretty good. She sees her oncology team tomorrow and dermatology, then flies home by herself for the first time. Pray nothing interferes with what she knows to do. She had some down time tonight with other teens in the teen room..playing Pictionary and Taboo. Now, she is working on homework. Tomorrow between appts., she is Skyping her Latin class. This is grand technology. Pray it works well for her sake.

Tomorrow is a crazy day at the Koch home. Please pray everyone does everything they need to in the correct time frame. Grandma is doing a big chuck of driving starting at 3:30 to places she's been to once. Pray for safety and peace be with her during this time.

We have been meeting many new people and teams like the Pediatric Oncology Branch. Some I met while here with Karly, but Kelsey is meeting for the first time. She is pleasant and helpful to everyone. The social work gal is having a student learn with Kelsey because she is so compliant. Some of the Dermatology Doctors sound like they are planning a new article for the general doctors who can learn at an early age how to spot Dock 8. Kelsey is all about helping with that. She is amazing. I am so proud of her and Karly. I watch what they go through and cannot imagine how I would handle it. Karly had her throat sprayed with this awful tasting numbing stuff. It is not painful or anything, but they were kidding me that I should taste and experience it. I declined. This is just normal stuff for them and even when they always have a choice to decline, they choose to comply to help themselves and others. Well, gotta get ready for bed and kick back a minute.
Love to you all,
Tammy

And so it begins....

Now we take a big breath in, sigh, and let it all go. Are we ready? Yes! Kelsey is beyond ready. Timing seems to be right. We have to believe it is right. School, dance, volleyball, soccer, and other extras are all in full gear now. I finally feel settled because I've done all I can do to prepare the troops at home. I feel sad at leaving them alone. It is the motherly thing coming through. I'm glad that I will only be gone for a week, then home for a week before I'm gone again. This will allow some of the kinks to come through, so we can do better for the long haul. So many of you have offered help and asked how to help. I'm sorry that I cannot tell you. I couldn't tell you last year when we were greatly challenged. I am relying on your hearts to tell you what we need. I am relying on God, our Father, to reveal Himself to you for all the particulars. I think that when we release our control to Him and find peace in Him, we receive the ability to trust Him one day at a time. In my devotional today it said to pour all of my energy into trusting Jesus. Baby steps of trust are simple, but giant steps: scaling cliffs of uncertainty & trudging through the valley of the shadow of death are another matter. My focus will be on the path just ahead of us and on the One who never leaves my side.

Thanks to all of you who came by last Sunday. Thanks to all of you who agreed in prayer with us at 4:00. Thanks to all of you who couldn't come by, just know that we appreciate you. I hope you felt loved and special. Each one of you are. We felt blessed by your presence.

Kelsey will be undergoing some firsts even for her. It is hard to imagine something she hasn't endured. Her schedule goes something like this:
Monday: Large blood draw, Endocrine testing, IVIG infusion, bedside consults
Tuesday: Dental, Bone density, screening with Dr. Hickstein(transplant)
Wednesday: Pulmonary Function, Bone Marrow Biopsy
Thursday: Radiology Oncology Consult, CT of head, chest, abdomen, pelvis, neck
Friday: Blood Draw and signs consents to enter Transplant Protocol
Saturday: hopefully flies home
Prayer requests: Courage, Strength, Perseverance, egg harvesting works out, nothing prevents her from entering protocol, minimal problems with each procedure, she gets to come home between Oct. 2 and when she starts the transplant(possibly Oct. 13)
As things happen, I'll be more diligent at blogging. Thanks for hanging in there over the summer.
Love,
Mom

INVITE

Hi to you all,
The Koch family is hosting a celebration party to say thanks to you for all you've done to help us out, say hi & bye to Kelsey because this is her last weekend home before the big event, and generally hang out and eat snacks. This event is from 2-4 at the Koch Home on Sunday, Sept.19. Around 4:00 for those who would like to join us, we are having a time of prayer. There were many people who reached out that we don't even know. If you can and want to, please come so we can thank you. All the thanks over the blog just don't seem enough. We are so grateful! It is said that it is easier to give than to receive, and that is how I feel. It is hard to receive when all you can say is thank you. I hope you feel it reach your heart when I say thank you. I get choked up when I think about all of the help we really received. It is such a testimony of God's amazing grace. I heard today about the next step in our story and will blog about it hopefully before Sunday. I will also try to have a list of specific prayer requests for our next visit on Sept.26. Until then, know that we do love you!
Love,
Mom

Flip-Flop

We were finally able to meet with the transplant doctor. He had met with our primary team of docs and through a lengthy discussion determined that Kelsey is in more dire need of the transplant right now. Karly's cancer doctor felt like she could wait till later this year to get her transplant. Some of the reasoning behind this is that Kelsey's health is deteriorating at a steady decline. At some unknown future point, she might become ineligible. Kelsey is mostly non-functioning these days. Her pain in increasing. As she gains weight from steroids and other issues, it causes stress on the rest of her body. She woke up this morning with one eye swollen and unable to open. Of course, with each new problem grows concern. Her doctors are so on top of it. With one email, we are talking with the very best and dealing with treatment. With the new eye development, if it doesn't improve with the treatment in a day, she will be flying to Maryland right away. This is how serious any new thing is with her. Kelsey appreciates being asked how she is doing or feeling, however, she gets apprehensive to tell them the real truth. People expect her to be doing better. The truth is that the disease progresses. She's the oldest living person with Dock 8. This takes nothing away from the prayers and the knowledge that she could be healed at anytime. The moment that would happen, the news would be heard! Until that time, she gets more and more non-functioning everyday. Although Karly's disease is progressing, she is functioning. She adds more treatments to her daily list of stuff. With each new symptom, I can see the concern on her face. She doesn't want to look or feel as bad as Kelsey. With that being said, I'm sure she is anticipating her transplant. The relapse of her cancer is the biggest area of concern, so her transplant will happen yet this year. Many people have been asking about if we have our donor. NO, we don't. One very large, nice specimen of stem cells that they can share is still the perfect scenario. I believe they would transplant the girls together if this would happen. This would mean less time for the family to be apart. Tracy would function as a single parent for only half the time. As it is now, Kelsey goes for a week of eligibility testing on Sept.27. At the end of that week, she signs the paperwork, and the two cord bloods are ordered. Dr. Freeman would then start her magic to get Kelsey's body in the best shape it can be before the transplant. About mid-October the regime for preparing her body for the transplant begins. She gets essentially 5 days of chemo, 1 day of radiation, then her new stem cells. This is when the hard part begins, and the doctors really work overtime. We will need lots of prayers during this time. We need: the infections to stay away, stem cells to engraft, her remaining immune system to not attack and destroy the donor's cell which is called graft rejection, the donor immune cells to not attack and destroy her normal tissues and organs which is called graft versus host disease, and she needs her own blood and immune cells to fully convert to her donor's type which is called full donor chimerism. Karly is fine with Kelsey going first. She said, "As long as I get mine." Kelsey and the family have made this decision fully aware of the risks. We continue to trust our Lord with the outcome. There will be no regrets, no second guessing, no asking why. We are fine. From the first day we went to NIH, we have felt like God placed us there. The girls basically have grown up there. There isn't a day that goes by when we are at the Clinical Center where we don't see familiar faces, get hugs, see smiles, and know that they truly cared for. Our family and friends continue to care for us in big ways. Keep it up prayer warriors!
Love,
Mom