Day 45

Tracy text me this morning and said, "Praise God, an uneventful night." Then I heard that Uncle Alan had gotten her to remember her new blood type even after she slept and woke up. She remembered that Aunt Joanne fed her broccoli last night. These are exciting developments for us. She maintained her body temp all night for the first time. WOW!

This morning I was thinking about all the things I should do to get ready for Christmas, but I don't feel like doing or have the time. Then, I read in the devotional today about not letting the clutter weigh me down. Fortunately, when I am with her the clutter disappears, and I can focus on her. I can look at her and see the Christmas Miracle occurring. These are the important things right now.

This week will be about maintaining a stable Kelsey and then seeing more of the little things get better like being able to get out of bed, walk, get the catheter out so she can pee on her own. She wants to be able to do these things, so her will is there. We need to get her body strong enough. Pray we stay on this uphill trend.

Love,
Mom

Day 44

Last night she had a few bumps with a reaction to the platelets which hasn't happened for about a month. Her eyes and lips swelled. Her feet itched. They think that her new immune system may have recognized part of the platelets as foreign. They have made a plan for the next time. Fortunately, Tracy was spending the night and noticed it. Of course her body temp is hard to keep steady. It seems as though we spend all day trying to get it back to normal after it drops at night. But,the good news is that we are able to get it back to normal. She had some good awake times today. She ate some broccoli with margarine, baby food peaches and pears, and 1 chicken finger. She is so much fun, and she purposely kids around with us. I cannot tell you how many nicknames she has given Tyler, but this is typical, and they all make us laugh. Her Aunt Debbie and cousin Deana came yesterday with cousin Hannah's prayer journal. Debbie read this entry to her. She remains aware of all things pertaining to Jesus and her faith. Debbie took Konner and Karly back to Hughesville for the weekend. They were going to the play at the theater called "It's a Wonderful Life". Tracy, the boys, and I went shopping for 4 hours. Didn't accomplish much in the traffic, but did OK. Grandma and Kassidy stayed with Kelsey. Karly's beau, Zach, flew in today. Tracy picked him up from the airport. He will be with us till Thursday, then back again after Christmas for awhile. Alex returns on Tuesday until Jan.2. My brother and family drove from Indiana today. They were able to have a very good visit with Kelsey this evening. It is always hit or miss catching her awake AND talkative, so I was so happy they saw the fun Kelsey. It is so hard to prepare for Christmas here and get organized with so little space and little time. However, it will be just what it needs to be, so no worries. The kids understand.

The devotional today was so awesomely perfect. It spoke about a persistent problem that should be viewed as a rich opportunity. A year ago that is exactly what I used the time for. An opportunity for so many things...learning, growing, relationship building, trusting, greater faith, less control, and contentment in the situation. I became more thankful and believe it or not grateful not for the cancer but for the situation. The problem had no power over us and our thankfulness flowed, not only to God but to all of you. Our hearts were opened wider. It forever changed the relationships between each family member. When Sharyll posted about what does a cancer patient wish for it is true "to be well". This year finds me stronger facing more of the same, but feeling as though I've actually learned a few things from last year. People seem to think that it must be awful to be here away from home. Actually, it is quite an awesome place. It feels like a place of refuge at the Inn. I have learned most of the ropes here, know a lot of people who make me feel at ease, I can be myself, and really don't want for anything(except to get her well). I sorta know how to get to places if I need to. Thank goodness I have this laptop from last year. I use it everyday to keep in touch with family, friends, for bills, maps, medical terms, diseases, movies, and more. It is a blessing. Mom has been a huge blessing. Without her, I would probably be a bit frustrated and tired. I only want to be here with Kelsey. I am so glad that Tracy spends the night. It helps me rest a lot easier. We are still seeing gains with her brain. I would call today a good day because they were able to keep her steady for much of the day. She remains so sweet and occasionally that sassy girl comes out too. So much fun!
It is late, and hubby wants to sleep, so I'm off to the Inn for night.
Love,
Mom

Day 43

This is the fun poster that was made by a relative of one of her favorite staff. It is a great focal point for Kelsey, but even more importantly is that the people that don't know her can get a glimpse of her personality and what she likes. It has been without a doubt a perfect way to represent her while she's not herself.
Everyday we see such horrible things happening to her. There is not anything we can do. We advocate for her all day and night long. Her doctors and nurses are awesome. We were able to keep her body temp stable for 12 hours, then wham it dropped 3 degrees this morning. We haven't been able to increase it again yet. This is miserable. Her blood pressure has been steadily increasing without much help from a multitude of drugs. Currently they are trying to place an "A" line which is an intra-arterial line to keep a constant check on her blood pressure. They are putting her on an IV drip, so it will need checked around the clock. The doctor is on her third try to get it to thread, I hate this. Her urine is very bloody for many reasons, but again, trying different methods of stabilizing this other virus and kidney function. The hole in her septum keeps bleeding. ENT is here to check this problem out again. Even though the virus is in one way better, there is so much fallout from the drugs. She is aware of more pain and things around her, so it is probably a good thing she forgets it rather quickly. She is getting some physical & cognitive therapy. She is on a mechanical diet. She still has some very good times of the day where she converses with us. These are the fun moments. Tracy is spending every night with her, and we are here all day. More family coming tomorrow. She really enjoys her family. All the doctors are sometimes overwhelming. She told me yesterday, "I can do this."...and she is with God her Father. I cannot express enough how thankful we are for the prayer support. This is certainly going to be God's handiwork for her to recover.
Love,
Mom

Day 41

Not much new. Her body temp is still perplexing and causing concern. The doctors have been able to find some case studies that have reported this body temp change as a result of the brain infection. I think that if we left her temp alone it would just stay too low, but we cover her with the heat machine blanket to get it normal and sometimes over shoot it too high. This would indeed be the temp regulatory part of her brain. What is concerning is that she looks better clinically, but then this part of the brain is not acting normal and why now when she seems to be improving. She didn't sleep much last night, therefore slept most of the day today. When she does this, we can't get much done with feeding and therapies. However, she did wake up this evening after a bout with temp too high, horrible belly pain, and body pain. She blasted out a huge amount of "you know what" which was great. Her temp is starting to level out. She ate some baby food, talked with the kids, and Alex on the phone. Tracy plans on spending the night with her again tonight. She had her LP today, so we should have some results from this tomorrow. Her brain MRI is planned for Friday. As always, everyday they have to adjust volumes of meds and types of meds. I would love to see her get some strength in her legs enough to gain the confidence of her therapists. This would be a huge gain and one that would make it easier to move back to her peds floor. Continue to pray for wisdom through all of this.
Gotta go sleep.
Love,
Mom

Day 40

Her body temp has fallen to 93 degrees. There are a number of possible reasons for this. The best one for now is the brain infection. She remains under a bubble type pad that inflates with warm air, then is covered with warm blankets. She has asked better questions today, noticed when everyone is gone opposed to everyone watching her, and has enjoyed her baby and pureed foods. Although we don't know everything going on with her medically, we feel as though mentally she is making progress. They will be repeating the Lumbar Puncture and brain MRI later this week. We don't think we will see much, but the trend going down would be encouraging. Still asking for a miracle. Still seeing something that doctors couldn't predict, still have much faith, trust, and hope for her future.

The Children's Inn continues to be a place of refuge for us. We can be together for meals. There are so many cool activities for the kids. They did cupcake decorating one night before dinner was served. They have seen Santa several times. But, hey, they are kids and need to have their minds taken off of the serious stuff. They saw a mini version of the Nutcracker at the Inn, some are getting to go to the Redskins Stadium for a behind the scenes tour and lunch, others are just enjoying Rock Band & Build-a-Bear activities. Karly is getting most of her health appointments this week, so she will be refueled for 3 weeks. Grandma is still a huge help. I am sure she is getting her exercise between the walks to and from the hospital, trying to find the little girls, fixing meals, laundry, and whatever else she sees that needs done.


People from the Inn, our doctors and ICU nurses, nurses from 1NW, family, and friends from home are doing everything to keep us sustained. We appreciate it all. We certainly feel the prays and feel loved. It really chokes me up sometimes. A great big thank you from a grateful family!

Love,
Mom

Day 39

Today is about the same, although she has graduated to pureed foods like baby food and applesauce. She is also doing a bit of arguing about getting out of bed to potty. She thinks this is bull. These are good signs, I think. One of the nurses sister's made her an awesome poster of her life since high school. It now hangs on her wall in clear view for Kelsey to see. Everything else is a battle with maintaining her body. My thoughts today brought me to why we decided to go forward with the transplant. There were no good options because Dock 8 is a deadly disease. Kelsey hadn't been living a life other than just being alive. She knew without doubt that this transplant would give her a chance to live a more normal life. I cannot imagine that God would let her quality of life be worse than when we started. We all realize that this is possible, but are still standing on a miracle. We do not even try to imagine what this will look like, but are holding on to our hope. As for the future with Karly, the transplant is still our only option, for now. Much discussion and further planning will go on before we start this, and we will wait on God's timing and peace. The ultimate match is still what we are looking for. Cord blood is still available for her, but a match would be so much better. Please pray for these areas as well. Meanwhile, we are working to keep Karly stable in all aspects. There is not any doubt that this scares her, but she is as strong as Kelsey in faith and trust in God. Please, O please continue to pray. Alex left today so please pray for him during his travels and for peace as he is away from Kelsey. I cannot stand to be away for long, so I know it will be tough for him. Kelsey needs each area of her body touched by healing. We are rejoicing in the miracle we have seen so far. We ask for more every day.
Love,
Mom

Day 37(12-11-10) & Day 38

On Saturday, Tracy, Konner, and Kassidy took off from Dulles on United Airlines and arrived at the North Pole:) They had fun seeing Santa, making crafts, and eating.
Kelsey had a CT of her lungs Sat. morning. It looked better than on Friday, so everyone felt better over the weekend. This and the bladder virus will be added to those things that need watched. Kelsey slept much of the day until 4:00, then was up and wanted to eat so I fed her chicken broth and strawberry jello(Alex took over the jello feeding so I could go eat). She slept again until 11:00pm, and this time when she woke up she was initiating her will. Alex stayed all night. Kelsey wanted to get out of bed to potty. He had to explain over and over again that she couldn't get up to potty & she couldn't get out of bed. She said it was gross to potty in bed. This is a good sign though. She slept some last night, but has been up much today. She asked to eat so had chicken broth and jello again. Every time it tastes good. Aunt Debbie, Hannah, Rachel, and Deana have come to visit today. Hannah shared a story about her prayer journal. I love having family around. Steph(she's family) left this morning and again I say a great big thank you to her and for her obedience in coming(For Pam and Tim also). Even though she thought she was coming to give me a break, and it didn't look like what she thought she was coming for, her stay here was just what God had in mind. I am thankful and grateful for the role she played during this crisis time. Grandma has been invaluable also. She takes cares of the comings and goings of the girls, makes the boys bed(they don't care but I'm sure housekeeping likes it), cooks and cleans, went shopping for groceries and just whatever comes up, she does. I just keep taking care of my girl and being with her. With so many mouths here and a tightly cramped room, I appreciate orderliness, tidiness, and eating without the cooking and cleaning. We are still walking through so many unknowns, but we have faith and trust in our Lord. I cannot look to the future or imagine what it would be like for I am not equipped for that. I try to stay in the day as always. Thank you and you all know who I mean for all the blessings you are sending our way.
Love,
Mom