Day 18

She's had another long day. Good news is that they gave her the Cidofovir. With that drug comes a lot of fluid, nausea, and a crushed up nasty tasting pill that is taken 3 times. Just the mention of its name makes her gag. It is very mental to get through it. Karly and I are trying the randomness of silliness to take her mind off of it. In the midst of that is more platelets, reaction, itchiness, ice packs, heartburn on fire. We are trying to laugh our way through it. Thank goodness Karly is here. She is great at funniness. Liver counts still rising, Yuck. Rash is on arms, face, legs. She is wearing a beanie tonight although it makes her head hot. With the hair gone, the molluscum really shows so she likes to hide it. I got her a couple of scarves and t-shirts for a head wrap. We're learning. She is blistering under her dressing around her pic line...kinda weird. Her sputum culture showed some weird growth, so she is on respiratory isolation...currently pending the nasal wash. Her chest x-ray looked better than the one last week. Finally she is resting...maybe no drama tomorrow?

I loved my devotional reading today. "A thankful mind-set does not entail a denial of reality with its plethora of problems, instead it rejoices in Jesus, Our Savior, in the midst of trials and tribulations. He is our refuge and strength, an ever-present and well-proved help in trouble." I love this truth.

The message on Kelsey's blog last week is finally able to be copied. With the computers blocked here from certain functions, I was able to get what I needed while at my sister's. May this bless you as much as it has blessed us.
"I just happened to notice you today on my friend's page. I am a minister in Ohio and that's how I know our friend.

I hear God talking to me about you this morning, and I just want to share what I hear him saying…

He says that your faith is so pleasing to him, you have such a high level of trust in him and his word and it truly is the kind of faith that can move mountains. He says even at your weakest you are so strong in your faith and unwavering trust in his goodness and mercy.

Your foe is a formidable one but it can't defeat you and you will not succumb to it, you will never wave the white flag of surrender but you shall triumph over it.

I see you in the future, you are older, (yes you will live to be older so don't fear) and you are standing on a stage in front of all kinds of doctors and you are speaking about very complicated things that I can't pretend to understand but it is apparent to me by this vision that your renowned in the medical community and have come up with cures for diseases and accurate reasoning about things that have yet to be understood by the brightest doctors.

You also have on a white lab coat yourself so whether you are a doctor or a scientist, I don't know. I hope this encourages you, you are in the heat of the battle right now but you are going to be victorious. I will add you to my daily prayers as well."

Blessings!

Isn't that a WOW moment? It is just like our God to give us what we need when we need it. We are energized by it. I will leave you with that. Be inspired!
Love, Mom

Day 15

Today has not been too bad. She took a shower which makes her head hurt because she is standing up too long. Her hemoglobin is down, so she is getting 2 units of blood. Her liver count is on the rise, so it's a bit worrisome to the docs. They are watching it closely. It could be one of many signs, but the one that comes to their mind first is the Graft vs. Host Disease. It doesn't do us any good to worry about it. We will continue to take it one day at a time. Today our devotional read to cast all our anxiety on Him so that is where we send it. I'm finishing up Kelsey's laundry and my sis is here. Gotta run, but blessings to all of you and thank you for your love and care.
Love,
Mom

Day 14

This morning was a rough one. Her fever started at 100.6 rose to 102 with Tylenol, bad head pain, and platelets low. They drew all necessary blood cultures. The line had been pulled last night, so it most likely released some bacteria into her system. The incision itself was infected. They premedicated her before the platelets, however, she had a reaction. It started with an itchy tongue, the lips, palate, inner ears, and body. They added more benadryl and stopped the infusion. She recovered within an hour to only have to go get sedation for the pic line. Now, call us nuts, but I had been rubbing her head throughout all of this and her hair was a matted mess. She said to just cut it all off.(not the first time she asked for this) So when the nurse stepped out for something, I grabbed the scissors and chopped it off within an inch of her scalp. She really was quite relieved. Then, the next moment she left, Kelsey wanted it washed which only took a minute. We had it toweled off just in time to wheel her to Interventional Radiology. All went well with the procedure, and she slept most of the afternoon. Her neutrophils have indeed fallen to 750, so the shots will begin again tonight...maybe every other night, who knows.

I am still planning on leaving tomorrow for the weekend. Alex is coming Friday night and staying with her. Of course, we cannot have another morning like today. Tyler doesn't have mono. Still sick but seems to be improving. He's going to be in Muncie on Saturday. Karly and Konner have their volleyball banquet Saturday night. Whole family including grandma is going. I am excited for them. It was Konner's first year, and we had no idea that Karly would be able to even play a season this year. She did extremely well. I was telling her physical therapist out here about her awesome serve. I believe I saw a hint of pride...not really, but great excitement anyway. Can't wait to hear about the evening.

One of the things we have no idea about nor need to know is how long any of this will last. We do know that it is different for everyone. We cling to Jesus moment to moment; He enables us to persevere. Thank you for lifting us up to our Father!
Love,
Mom

Day 13

Her head pain and nausea were increasing over the past two days. We were attributing these things to the starting of the Cidofovir which can take the blame in part. The head pain was indeed the beginning of another line infection. Her fever was beginning to rise, and there was pain at the site this morning. They won't be able to put another line in until tomorrow, so a peripheral IV was put in her hand, and the line will be pulled today. The drug that was stopped Monday has been restarted. Hopefully, these things will put her back into a stable state of being. Her neutrophils are still above 1000 but have dropped since the shot was stopped. Still everything else is looking good. We rejoice for every good and bad day. Her hair yesterday and today is really starting to come out. I cut off about 4-5 inches of hair today. I had the privilege of watching our research nurse coordinator present the girls case at the 2nd Annual International Association of Clinical Research Nurses Conference. He did a marvelous job. I have noisy neighbors at the Inn on both sides of me. This makes me tense. The noise went on far too late last night, so pray with me that it will be a more peaceful evening tonight, and I can get the rest I need. Many people come here from out of the country. This place is sorta like a fantasy playland hotel resort to them, and it is a big party with staying up late and running around. Then there is me who loves the facility and the care of the people, but want to experience rest and peace while here. The two clash. This remains a prayer request for me to relax and let God take care of me. I have another grand story to tell but cannot access facebook on my computer at the NIH, so hopefully soon, I can share this goose-bump story, a God story, so powerfully encouraging and hopeful that only He can provide. I love to spread the good and glorifying news of all that He is doing. All I can say is WOW!
Love,
Mom

Day 11

Her counts are still holding. They will be stopping the GSF shots which boost her neutrophils, so they said to expect drops even below 1000 again. If that happens, then shots will begin again. She is glad to have a reprieve because both arms are so bruised from the shots.
She remains having a low fever, but nothing worrisome. They just dropped the IV form of one of the immune suppressive drugs to oral form. The other one already is oral. The once a day IV antibiotic to treat the staph bacteremia(sepsis) will continue and the other is stopping .She could go outpatient on the IV drug and just pop in once a day to change the bag. It does not look like she will be outpatient this week, but every day is a day closer. The key thing is not move too quickly and remain safe in treatment regimes. The multitude of docs finally agreed it was safe to start the IV Cidovofir today after taking 2 doses off. So, she is happy about that. She had started to see the shape of her real fingers after 5 weeks of it and the virus was starting to return with being off. On Thursday, they will check for the first "chimerism" from her blood, no bone biopsy until Day 28. A test for chimerism after a stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue. They should be able to tell the percentage of each cord and Kelsey. They will continue to check this at certain intervals.

More prayer requests, I found out that Tyler is sick at school. He has an ear infection and possibly mono. The doctor didn't test for it, but said if he was still sick in a week, he would. Tyler's throat is on fire, but no strep. He will be home in Muncie this weekend, so pray he gets well, no mono, no getting anyone sick, and most important he doesn't bring anything horrible out here. God can heal the sick. We need to be together for the holidays. I would hate to leave him alone at home. May this not happen.

The previous entries to the blog, the YouTube videos, were to encourage Kelsey. I hope that you can be encouraged to. It was a huge hit here. Thank you guys for doing that. Oh, another fantastic thing happened last Wed. and Thurs. at Taylor University. My mom, with a bunch of friends, took just over 400 swabs to send to Be The Match. It was an awesome show of support. What a sacrificial thing these students are doing! May God Bless them. Thank you mom, friends, and all the people at Taylor University.

I am constantly challenged by all the blessings we receive. The challenging part is the receiving. Feelings of guilt, unworthiness, and thinking others are more needy creep into my thinking. God's kingdom is not about earning and deserving; it's about believing and receiving. I am learning to accept the gifts with an extremely grateful heart. I rejoice and try to find ways to bless others while here. Our God is a God of abundant gifts, may you receive from Him with a grateful heart.

Love,
Mom

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