Day 15

Her ANC is over 3000 today...meaning last night of the shot..meaning all the bruises on her arms can start to heal. Since this is an artificial boost, they expect it to drop down, but not so much to cause any problems. The mucositis continues to get better. She is still on a large dose of Dilaudid through a PCA, but they expect this to improve over the next week. She is starting to drink again and eat a little like jello. She says, "Today I am so thankful for how on course this transplant has been. Through all the prayers I have been blessed by, everyday of this has gone just as planned. In fact, I think things are going better than I ever expected. I am happy to report that things are starting to feel a bit better, pain hasn't been too tough, and white blood cell numbers are continuing to improve. Praising God for everyday!"Continue to pray for No BUMPS in the road ahead. She is only Day 15, so maybe another 2 weeks inpatient, then another 60-70 days outpatient, hoping for shorter but patient for whatever.

Grateful for peaceful days like today. Pray for peaceful nights and restful sleep. I have conversations that bring up Kelsey's transplant fairly often. Sometimes, it leads to trying to find an understanding or mastery to what happened...all the mysteries that have been unexplained. Of course, this is a battle in my mind. And gratefully, always ends up with the same realization: God has instructed us to trust Him and not in our understanding. I love to figure things out and solve problems, so it is something I must be careful with as that could be a focus that consumes me. Thankfully, God has taught me so much about this, and I am free of the consuming nature of it. I am so grateful for God's grace and mercy..for His loving character and faithfulness to us. May you find this in the storms of your life.

We are dancing through the rain.
Love,
Mom

Day 14

Her AbsoluteNeutrophilCount is just over 1000. We need three days of this to quit the nightly shots. Pray her platelets hold and she starts making her own because the allergic reaction to these is yucky: swelling and severe burning itching rash over all her body and that is with premedication. She has been a little nauseous over the last 2 days. She wants to eat, but cannot handle anything other than liquids. Everything is going as planned...I said like textbook....then docs were oh wait...we are writing the textbook.

Visitors today...Aunt Debbie, Deana and Hannah. She went to the playroom to retrieve some supplies to make jewelry. Uneventful is good news around here especially going into the weekend. Praise God from whom all Blessings flow!

Love,
Mom

Day 13

She is starting to get better from the mucositis...pain level down to a 6 now. She can take in some water and attempting some food. She looks good and keeps pushing herself. She takes walks and manages some dance moves and stretches. We played Bingo last night...yah, we go for the fabulous prizes: Snakes and Ladders, Princesses Flashlight/Pen, and photo book.

Look who's still dancing through the rain.

The family made it safely back to Indiana last night. Tracy and I celebrate 32 years of marriage today. Praise God, we have been offered a car. What a relief that is. God is working out all the details in her body and out. Thank you Jesus!

Love,
Mom

Day 12

She has started to engraph. This is the first part of what is supposed to happen. This will bring another set of issues, but through all of them we continue to hope and pray that nothing unusual or threatening occurs. She is holding on very well. There isn't anything to do except persevere. She know this and is hanging on. There is a storm going on in her body,
and we pray that things settle down where they are supposed to. She was encouraged by all the cards she received this week. They are now hanging on her walls to encourage others that walk in as well as continue to make her smile as she looks at them. She feels the love.

Day 11

I will be glad when this week is over or at least the mucositis is over. Tough watching her suffer all day, and Zach watching all night. She was tanked with pain medicine yesterday which was scary to watch her go purple when she slept. Her oxygen dropped really low and was put on oxygen when sleeping. They reduced the amount but pain level is high. We are still trying to find the happy medium. This is still the normal, and nothing new has cropped up. They are being vigilant. Her BP and other lab numbers are good for her.

Although Konner could almost pass as shaven in this picture, she did not shave her head. Karly was well enough last Tuesday to get it done.

This was taken on Sunday. Her hair was starting to come out, so she wanted it shorter. I love this picture of the two of them. Zach has been awesome at caring for her during the night. She says, "I couldn't do it without him." I don't believe that he could do it apart from her. The next day her hair really started falling out.





We made a decision to not take the church house that was offered to us. It was an older home which needs quite a bit of work to make it safe for her. We currently think we will be at the off campus home that the Inn runs. We have a couple places working on a borrowed car for us. I'm sure that whatever happens car or not, another house or the Inn house, God has already got this. We just take each day as it comes.

Tracy, Trent, Konner and Kassidy will be returning home tomorrow, then the race begins for Tracy. He will settle into some kind of routine. We have done this a couple of other times. Again, just taking things one day at a time.

Thanks for keeping us in your prayers. We have been doing a lot of that around here. We appreciate our doctors and all our NIH friends who come by daily to visit.

Love,
Mom

Day 9

The mucositis is very painful. We were told to expect this and the next 2 weeks can be awful. TPN(nutrition through PICC line) and PCA(patient pushes button for pain med) will be started. She needs constant drugs through lines including platelets. She reacted to them with mouth swelling. Will try again with benadryl on board. God is in control, so we pray about everything and worry about nothing. Pray for her pain and perseverance. She cannot take meds by mouth, so all of her heart medication will be changing. Pray they get this right. The next 2 weeks are critical, but next few months are an up hill battle.

Tyler left for the airport this morning. Already miss him and the laughter he brings everyday. He was still slightly anemic, but getting better.

Kassidy has been a huge help. She made cake for dessert yesterday. She cooked turkey bacon for breakfast. Just give her a task, even if she never tried it before, and she joyfully completes it.

Konner has had a cough, so she hasn't been able to interact with Karly. We are all wearing masks around Karly just to be safe.

The Children's Inn has a field trip Tuesday, so the girls are going horseback riding. It is a nice diversion for them.

We've had some good nurses over the last few days. Praise God!

Thankful for your prayers and encouraging cards.
Love,
Mom

Day 7

Well folks, she is neutropenic. This is what is supposed to happen. We were hoping to be spared the nasty side of effects of it all, but she has been in severe pain and cannot swallow. She just had a dose of Dilaudid that helped with the pain so she could eat, and just threw it all up. She is pretty miserable. Please keep praying that these nasty side effects will go away. This is also the time that dormant viral, bacterial and fungal infections can rear up. Pray against these in the Name of Jesus. We are still trying to regulate her BP and immunosuppressant drug. We have not had a very good day with nurses either. All these things we lift up to Jesus and give Him control.

Tracy, the girls, and I went to visit a house that a local church bought and lets a family use from the Children's Inn. I was excited about this prospect until I toured it today. It is old, so comes with issues like improper stove venting, window air conditioners that needs replaced, and a moldy basement. One of the bedrooms had water damage. They are fixing the stove venting, and I think getting at least one new window air conditioner. There is nothing they can do about the moldy, smelly basement or the water damage in the bedroom. Under normal circumstances with someone with a good immune system, this would be great. I'm afraid that for Karly it would cause issues. I will be talking with our team about it to see what they think. I also visited an off campus house that is part of the Children's Inn which would be great. Because of different pros and cons, it is difficult to pick what we should do, but I'm leaning toward the off campus Inn house rather than the church house because of breathing issues. Please pray over the weekend that God's plan for our living circumstances be revealed very clearly and that everyone would be on the same page with this. Also, we have put out the word that a car would be an advantage for when she is able to get out of the house, plus just getting to and from the grocery and hospital. We are looking for a borrowed car for about 3 months. We wouldn't put very many miles on it, and we can park it at either location safely(garage at Inn house and church parking lot at church house). If you know of someone willing to let us borrow a car close to Bethesda, MD, please let me know.

Also, I have not been able to get onto the hospital Internet connection for 3 days. Zach hasn't been on for more like 5-6 days. IT hasn't been very helpful yet. Please pray that we can get back on. Doing all the things I need to do from a phone or the library computer is more difficult.

These are the current issues. More inconvenient than life-threatening, but Jesus cares about them all.
Thanks for lifting up our concerns to our Heavenly Father.
Love,
Mom