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.


  1. I consistently am inspired by all you write. You have a true gift. I attend Faith and know Angie through choir. I pray for your family all the time. Thank you, from the bottom of my heart, for your beautiful testimony, even at times as raw as your pain is, you make it sound bearable. No one ever wants to be the source of ..."My life isn't so bad compared to__________," but for some mysterious reason, God has placed your family where they are now and you continuously handle it with so much grace and class.I will continue to prayerfully lift each need as you post them.
    Blessings to all of you.
    Cheryl Psimos

  2. I am so happy to hear how well things are going! I have been so curious to know what was happening with you & Kelsey. I think I gave Konner a shock at co-op the week before last when I asked if you had been able to come home for the week. The startle only lasted for a second. :o)

    Keep updating us, please. We'll keep praying!