Sunday, October 31, 2010

Rough Day

She listened to worship music this morning. The first half of the day was going well, then the last half has been rough. She has thrown up, been in a lot of pain, and not eaten most of the day. They ended up dosing her with Atavan which makes her sleep, so this is not a bad thing when you don't feel good. The good news is that Day 3 is almost over. 2 more days of chemo. The pain in her neck from the line is not getting worse, but it is not going away either. Pray for complete healing in the area. When she heaves, it really hurts her neck. She is truly hanging in there. Hair loss is beginning, but not much loss yet.

Konner and Karly had individual and team volleyball photos on Friday night. I have them now so that will perk her up. Also, Konner went to her youth group's event tonight called "Glow". It was going to be lit with blacklights. She dressed up as Bo Peep with two of her friends as her sheep. Tracy sent some photos of her as Bo Peep so that will make Kelsey laugh when she wakes up. One of the items I got for her yesterday proved to be helpful. The blinds on her window allowed much light through, so it never felt like night to her. I bought a dark brown panel and tucked it under the blinds. Now it feels dark and helps her sleep at night. She has great support from you all. She really appreciates your comments on Facebook. It encourages her to know you are praying and thinking about her.


Saturday, October 30, 2010

Day 6 & Day 5

So Friday was Day 6. She took in the hydration 12 hours before the Cytoxan, was heavily dosed with anti-nausea, atavan, benadryl, steroid, fludarabine(another chemo drug), and more hydration. Fortunately she slept through a bunch of the day. Day 5 was today with more fludarabine and anti-nausea. She has maintained eating throughout, no vomiting and is really doing well. She is sore where her line went in and probably from lying in bed so the pain meds are helping with that. Tomorrow, day 4, will be like today. Tomorrow could potentially be a problem with the delayed reaction to it all, so continue praying for no nausea or complications. I went to the grocery store and mall to get her a few items she was requesting so receiving gifts is always mood-lifting. As I was bringing in the Bang Bang Chicken I bought her from the fast food Thai in the mall, some of the nurses were asking how she was doing. I said, "Well, she can't be doing too bad because she asked for Bang Bang Chicken." Everyone has been so nice. Kelsey is a great patient. Kelsey was asked to give her last research blood as a before transplant Dock 8 patient last Thursday which meant I give also. When I was called back, I had my favorite phlebotomist. She used to take the girls blood a lot in their younger years. She is so good. Anyway, she was very encouraging and hopeful. She said she'd be praying for us, especially mom, and that she'd be by to visit in a couple of weeks when Kelsey starts to engraph. This is the type of people we encounter every day. Isn't that just God to send people into our lives even 500 miles from home? We have had many successful days by definition meaning staying in touch with our Heavenly Father. The best way for us to remain satisfied and fulfilled is to live each day without thinking about the what ifs of tomorrow. Thank you all you prayer warriors! Prayers are being felt!

Wednesday, October 27, 2010

On the green light...

The Spanish cord has been shipped. They are expecting it this afternoon. Kelsey's line went in this morning. They didn't put the triple-lumen in because of the sulfur associated with it. She is allergic to eggs and sulfa drugs, but it is a double. Also, she has her PowerPort. Everything went well. The staff and doctors here were likened to the verizon commercial with the lone guy with his entourage behind him. Kelsey has great support with the people here. They really care about what is happening and all the minds will work and are working to keep her safe. Tomorrow should be a day of rest for her. She is very excited to start the chemo on Friday. My sister, Angie, said on Facebook, "Are you suppose to be excited to start chemo?" Exactly, probably not, but she is, so we are for her. It will mean a new life for her..hopefully one without the pain and suffering she has endured to this point. She is ready to lose her hair, vomit, and moan through it. She is ready! We are ready! God has gotten us all ready! What good news this is! Everyone hear is excited, and say she is a celebrity. I think she is considered an Ambassador for Dock 8. She is willing to talk with anyone who will benefit from her knowledge of this disease. She is AWESOME! She is COURAGEOUS! She is HOPEFUL! Since chemo starts on Friday, please pray however you feel led.

Karly and Grandma were here Saturday through Tuesday. We had fun at my sister's. We had much needed good food. Ridge is an excellent cook. Weather was perfect. Grilled out. Karly and Hannah took the golf cart out for a drive. Kelsey and I went to the mall where she received some needed items. It wore her out. We went to see Deana as Anne Frank one more time in her last performance on Sunday. It was superb. My uncle Arthur attended, so this was an added surprise. Debbie's rescue from the hospital was so appreciated. She had a late night getting herself home, but we were so thankful to be with her and her family all weekend.

Grandma's flight had been a source of worry, but thankfully her flight attendant helped her out. Anyway, the flight attendant gave her two cups, one for each ear, with warms towels in each cup to hold over each ear on the descent. This totally eliminated any problems associated with the pressure she would've experienced. Now, we had to tease her. We told her to check YouTube that night. The sight of that must have been hilarious to onlookers. Karly took a picture. It was quite a funny experience. Grandma's flight home went well also...some turbulence from the storms in the area, but no problems. It was a blessing that all went well. Grandma will now fly in the future.

I'm going to the Inn tonight to watch the kids in costumes get judged. The staff have on some really awesome costumes also...they get judged too. There will be a dinner served. I'll confiscate whatever candy she can eat, and let her feast later.

Love you all,

Tuesday, October 19, 2010

Delayed some more...

So for now, the chemo start date has been moved back to October 29, with cell day, Day 0, on November 4. This is the best that we can know. The cells are still in Spain. They won't be shipped until the 25th. With this latest information, her Hickman line will go in around the 27th. All things happen in His timing, so that is where our trust lies. We are not upset. That is how it is working out, so we are settled in for the long haul. She got another round of IV Cidofivir yesterday, so this is a good thing. Her liver and kidney are still doing fine. Her biopsies came back not normal. There is definite dysplasia, but not cancer. She will keep her regular check-ups to keep on eye on it. All in all she is stable. We enjoyed a good dinner at the Inn and saw a movie last night. She is sleeping now, people continually wake her up all day long. When the transplant starts, we will put a sign on the door to limit visitors. Please pray that these cells are perfectly healthy and no more delays. My room at the Inn is not feeling settled. Please pray for peace to settle in that room and that it would be a haven for rest and restoration from the day. Tracy made it through last week okay and just needs to get through another really crazy week. THEN, may they all settle into a schedule that makes everyone feel comfortable. We are looking for the state of serenity that flows out of trusting in HIS great sufficiency...HIS contentment.

Sunday, October 17, 2010

In the hospital...

We were able to discharge Kelsey for the weekend. Aunt Debbie picked us up. A bunch of us went to Outback for dinner. It was a little odd, but food tasted good to us, and we laughed. We went to see Deana as Anne Frank. The story is a sad one, so it evokes emotion anyway. I was emotionally choked up several times, not only because of the story, but also because I was so proud of Deana. She was awesome in her portrayal of Anne. We stayed up too late, because we could. We ate out again on our way back to the Children's Inn. She didn't feel like getting out and just walking around, so we watched three movies. I would highly recommend "Letters to God". It had me crying again that night. She slept till around 1:00 on Sunday. While she was showering, I moved into my mostly permanent room. It feels good to be able to unpack. We had a good dinner at the Inn...BBQ pulled pork, chicken, ribs, baked beans, slaw, potato salad, garden salad, fruit, spice cake and brownies. Now we are back at the hospital. Last week, she endured three biopsies of her cervix. Dr. Hickstein came in Friday. He wasn't pleased. There is a test to be done on the cords that they are dragging their feet on. It must be done by someone before the purchase of the cord blood. Need prayer on that. She is currently scheduled to get her triple lumen Hickman Line on Wednesday. On Friday(Day 6) the chemo is suppose to start. Day 5,4,3,2 are all chemo days...a total of 5 days. Day 1 is full body radiation. Day 0 is stem cell day!!!! which is October 28th. She is excited. With all the weight gain she's had from the Prednisone, I don't anticipate a loss of weight that will be too much, hopefully just back to normal. We are prepared with a wig and beanies. Encouragement is always needed. Her address is: National Institutes of Health, 9000 Rockville Pike, Building 10/CRC Room 2676,
c/o Kelsey Koch, Bethesda, Maryland, 20892 As things progress, I will keep everyone up to date. As far as I can tell, the week at home worked. I was sad to miss the soccer banquet. I will be even more upset to miss Trent's 18th birthday. Pray he feels his day is special. Remember His grace is sufficient for you, but for one day at a time.

Sunday, October 10, 2010

Since the last post in Sept....

Kelsey is doing awesome at NIH. We arranged her room, and she feels settled in. The nurses are great, and they like being her nurse...she is compliant, jovial, talkative, and not quite what they are used to on the pediatric floor. She is a blessing. Since I left on Oct. 2, she has signed the consent papers, had surgery to remove the fingernail on her left middle finger, and started the medication via IV that she had done in the trial stages last year orally. The reason they were trying this drug orally is because it isn't as toxic on the kidney in this form. Her liver didn't like it orally, and despite the fact that it was working, she had to quit it. Anyway, she has had one dose with the kidney staying within normal ranges. This is good news. They will give her another dose tomorrow. This drug is suppose to be killing the two double stranded DNA virus' that are obvious on her body. It is giving her body a head start going into the transplant. She has a transplant workshop on Tuesday. Wednesday is a colposcopy because her pap came back abnormal again. It usually reveals abnormal cells, so because of her history with this disease, it needs checked frequently to make sure these cells haven't changed into cancer. On Thursday, blood draws occur. All of these procedures can be done outpatient or on pass, so I'm checking into these options this week. It will give her a change of pace and food options. We can go to the grocery and cook at the inn. We may even be able to see cousin Deana in her play as Anne Frank this weekend....come get us Debbie!!!! The Inn staff have been great. They have accommodated our situation more than they would have to. It does make me feel less anxious to know that they have heard me, my concerns, my girls needs, and made things comfortable. I am so appreciative. Kelsey has been taken care of at the hospital also. She has a playstation DDR(dance dance revolution) in her room. She has been using it. The food service deliverer walked in on her the other day and said, "You go girl!" She went to the playroom last week and made a decorative tile. It took a long time, but hey, what else did she have to do? I like it.

Karly is doing great at home. She is close to making it through the volleyball season. Who would have thought? We clearly had no idea she would even be around this fall. All indications were that she was having her transplant in September. The Lord surely works in mysterious ways, so with the change of plans with Kelsey going first, every detail is in His hands. Karly is taking 4 classes, really challenging classes, this year. She gets to take them with her two best friends, Lora and Sarah. It has been truly a blessing for her. She works so hard sometimes that her parents have to say stop and go to bed, "Your body cannot handle normal stresses like pulling an all-nighter." She is an awesome child.

Trent, Konner, and Kassidy have all their P's and Q's in place this year thanks to so many people making everything come together. Thank you from the depths of my heart. I love you all. Tracy will take over once again and do amazingly well. I have no doubts everything will be fine, if not wonderful when I return home.

Tyler is off doing his college thing, but is in constant communications with us. We just love that

As for me, preparing to come is over. I admit that I had thoughts running through my mind. One question I asked myself was, "If I had one day left, how would I spend it?" I tried so hard to give each person all they needed from me. It took several days, but I got it done. I feel peace. I was going to sign a paper on Friday, nothing important, and was feeling anxious about it. When those feelings come, it is time to stop, pray, and wait which is what I did. When I got to the airport today, I didn't feel anxious. In fact, as I was waiting in line for security, the TSA agent smiled at me and asked how I was doing...ummm. I was frank, and told her I was leaving my family to be with my girl in the hospital, with another girl coming later, and that I wouldn't be back through here for around 5 months. She told me her story. She currently has a brain tumor diagnosed 6 years ago. At the time, she was told she had 2 years to live, wouldn't be able to have children, and that it would turn cancerous. She said that miracles do happen and that she would pray for me. Isn't that awesome? I had the nicest cab driver today, too. He was early which didn't allow time for me to purchase any food. When he found out, he offered to take me to get food(off the meter). I took him up on it and was stuffed by the time I saw Kelsey today. Good thing too, no meal at the Inn tonight. The world is often not a nice place, but I am surrounded by a lot of really amazingly generous, caring, helpful, praying, sacrificial people. I pray that as we continue this journey:our story, we like you, will inspire people, motivate people, encourage people to go beyond the walls of their owns lives to make a difference in someone's life. Kelsey and I cannot do much more than live our story out to people. Pray our words or actions will touch someone. Pray it makes a difference in someone's life.