Friday, December 31, 2010

Day 57

To God Be The Glory: I haven't totally conquered the art of receiving. I usually take awhile to accept. I may still feel guilty in accepting, but this one is so obviously from God. I knew I must accept. He knows what is and is to come. I am actually excited about this next journey.
The following is a facebook message that I've been given permission to share.

" I was praying for the concerns you gave concerning Kelsey being alone at night yesterday and how you would need sleep as well. I was thinking of how I didn't sleep when my girls were babies not because they wouldn't sleep but I thought they might stop breathing or be smothered. You know, you have been there as well. As we do sometimes, I started wondering if I could come and help in the night times when you need your rest. Then the worries came to me... Who will care for my girls, can we afford it, Jason probably wouldn't think it was a good idea, and lastly, maybe I am not the right person for this. So I laid it aside and thought I could ask Jason what he thought about it later. Well, after I finished grocery shopping today he came to me and asked me the very thing I had been pondering. He even started looking at tickets. We know you might not want this and it would not hurt us a bit if you declined the offer. But please know we want to do this with all our hearts as I know many others probably do. The Lord is good and we trust in him as we know you all do. Much love to you all."

Proverbs 18:16 A gift opens the way and ushers the giver into the presence of the great.
Romans 15: 5 May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, 6 so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ.
So May our Lord be Glorified!

The first results back from the bone biopsy are not showing juicy cells coming out of the bone marrow. They are in the consideration side of getting more cords for her. I don't know any of the ramifications of doing this other than trying to get cells to give her an immune system. They could still recover also. It is a tough call. One for the experts. Her kidney disease is on the rise and still a huge concern. They have adjusted the dose of the medication for the brain infection. So the big three are still the brain infection, the bone marrow recovery, and the kidney disease. I don't try to keep tract much beyond the big three, although I listen and pay attention to everything. Great wisdom is needed.

Aunties, Uncle Eric, cousins, and Grandma are headed back to the Inn tonight. We will see the New Year in together. This will give them a little head start in their drive back to Indiana on Saturday, also. Looking forward to the evening.

From the Koch's to all of you:
"The Lord bless you and keep you--the Lord make His face shine upon you, and be gracious unto you; the Lord lift up His countenance upon you, and give you peace." Numb. 6:24-26.
Love,
Mom

Tuesday, December 28, 2010

Day 54

She finally came out of her low temp state around 4:00 today. The good thing was she wasn't totally "out of it". When I came in this morning she knew me, she was eating, and was more alert. She slept a good amount this afternoon. She has been experiencing some extreme pain related to her bodily functions. They ordered another bed for her which she received tonight. It has air flow on the underside to reduce sweat. She seems to like it so far. Tomorrow is her bone biopsy and another lumbar puncture under sedation. She is not making any white cells yet. Hopefully the bone biopsy will give them some good information about what is happening inside the marrow. Her brain seems to be more alert. She is experiencing so much pain unlike the days she didn't know what was happening. All in all I call this a good day. I slept horrible last night. I had a couple people tell me that I was brought to mind last night. Thank you Jesus for supplying all our needs. It is not that I don't trust the ICU staff although I question them a bunch. It is that Kelsey wants and needs someone with her. I often don't think I dream or remember that I had a dream, but when it comes to Kelsey it is remember-able and not one that I want to remember. Most dreams are not of a happy nature. I see her sitting up abrupt, in pain, or some unknown things happening to her at night which seems to be a pattern. Whenever I leave her for awhile, stuff happens. Please pray for things to stop happening to her when I'm away. She tells me what a horrible night she had or what awful nightmares she had. Pray she can dream more dreams that are positive. Kelsey said that at night the enemy is prowling around her. I believe she is very astute. These things come to mind tonight. Thank you for keeping us uplifted. Amazing things are still happening.

Aunt Angie, Uncle Eric, Nathan, Megan, and Autumn were visitors yesterday. Kelsey enjoyed seeing them It really had been a long time, and she noticed how much they had grown. She had to ask them to leave as one of her belly pain spells was occurring, but thankfully they saw her awake and talking. They took Grandma, Konner, and Kassidy down to Debbie's. They did horse riding today. It was a nice 40 degree day. Uncle Ridge is bringing the girls back here tomorrow. Everyone will be coming back for New Year's Eve, then leaving for Indiana on Saturday morning. We still haven't figured out exactly what we are doing, but are thinking the rest of the family will return to Muncie and college to retain some normality in their lives. If the need arises for them to return, then that is what will happen. We won't decide until we reach that day. Things happen so quickly around here. She remains very complicated. Continue prayer for wisdom and however else the Holy Spirit leads. Thank you Jesus. Thank you warriors.
Love,
Mom

Monday, December 27, 2010

Hey all,
It's dad here. It's 11:10 at night. About every 10 minutes Kelsey wakes up, pushes down the covers, and wonders where she is and what is going on. The nurse just checked her again, 34.9 degrees Celsius. It is quite crazy trying to re-explain this adventure and the healing she needs. I love to watch her beautiful trusting eyes all night long. When her temp is up, she shows promising signs of rejuvenation in her short term memory. But when she is cold, she really doesn't know anything about what has happened or where she is at. Still she takes it in stride telling the nurses this is crazy etc.
Today has been a day of discovery with the ever changing issues she faces. We deal with each on as we know how and we wait for her immune system to take on some of the load. I try and trust that God will give me the confidence to go home and continue the norm this family needs while mom and her wrestle with the patience of her healing. It is hard to come to grasps with. Please pray for a breakthrough for this. Still holding on to her complete healing with total confidence but timing is so screwy here, now.
Dad

Sunday, December 26, 2010

Day 52

video

somehow in my deepest thoughts you find me

singing to myself words of importance

listening to and analyzing voices

talking about things i never noticed

silently worrying all my cares away

feeling sorry for myself when there's so much left to say..

you taught me how to breathe

breathe carefree

you taught me how to strive

even though there is suffering

and watching as it gave, gave you all away

you still taught me how to...

strangely in my hardest times you search me

and optimism isn't too far away

smiles and sarcasm fill the air

and your laughter seems to make me stop and stare

silently whispering all my thoughts away

giving into dark when there's so much left to say..

you taught me how to breathe

breathe carefree

and you taught me how to strive

even though there is suffering

and watching as it gave, gave you all away

you still taught me how to...

listen to the music fill your heart

lift your feet to show

sway so soundly to the tempo

raise your arms and just let go

just let go

you taught me how to breathe

breathe carefree

and you taught me how to strive

even though there is suffering

and watching as it gave, gave you all away

you still taught me how to...

you taught me how to live

live carefree, Kelsey

you taught me how to love

even though there is suffering

and watching how it gave, gave you all away

you still taught me how to...

dance through the rain

Deana Kay Gilley

Day 52

She was on a roll today. Grandma came in this afternoon. She looked at Grandma and out of the blue said that she had seen Grandpa last night. She proceeded to say that he was singing with the Angels. She said that he was happy, very happy. She said he looked good and sounded good. Mom praised the Lord. It was truly an amazing thing to watch Kelsey as she was speaking these things and see the smile on her face. I'm going to have my mom share from her perspective what happened. "When Kelsey said she had seen Grandpa, I first wondered if she remembered he had died and responded 'You saw Grandpa?' She repeated what she had seen and then I told her that it was one year ago today that he died. She didn't know that but I told her it was a message to me from God that she had delivered, and we all shed some tears." Grandma was wanting new memories and this one is one she will never forget. Sometimes she records things to help her remember, but this one is forever imprinted in her mind. Kelsey said that when she was "out of it" last night Jesus had told and shown many things. She said that many of them she couldn't put into words, but that the one about Grandpa was one she could. In fact she didn't share it with me all morning. It wasn't until Grandma walked in that the message was delivered to the one who needed to receive it. The Lord truly works in amazing ways with amazing timing. This story is too good to not repeat, so we are singing praises and want you to share this with us.
Love, Mom

Day 52


Sunday, December 26th one year ago my father had his home going. Mom is doing very well. Jesus has met her needs emotionally and physically. She is focused on making new memories. Jesus teaches her to live anew everyday. We are nothing less than totally blessed, even after all we have been through. Tyler and Alex had a horrible night watching Kelsey suffer in pain, watch her blood pressure drop, and spike a fever. They are back at the Inn sleeping. Tracy is sleeping after his early morning trip to the airport to pick up Zach. Grandma is going to clean up our rooms a bit and help kids find leftovers. It is not unexpected that Kelsey would get another bout of sepsis while being extremely neutropenic. Blood cultures and big dog antibiotics were immediately administered. She is responding. The midline pic may be pulled because she has been complaining of pain in that arm, the line isn't currently being used, and she is not using her arm to eat and drink with. These seem to be good signs to get it pulled and the possible source of the enemy. The ultrasound of the arm is being analyzed. It is a very quiet day in her room today. We have talked. She seems very alert today. She knows that God is using her story for His glory. She said that He will heal her one way or the other. I asked her what she meant by that. She said, "You know...He will heal me to carry on my story on earth or take me home and still my story will impact people." Then in her very Kelsey way she said, "You will be sad, but I will be happy with Jesus." She said that it wasn't about us. She sure has got it together in the way that matters. She continues to amaze people who take care of her. She really is a blessing to take care. I am so proud of her.

We are 1 week away from everyone going home. This concerns me in that no one will be around to stay with her at night. This causes me much unrest at night. I also know that the ones who leave will have concern not having as much day to day insight into her situation. Please pray in these areas. Continue praying for her complete healing. Today I felt a bit mentally tired of the roller coaster. It weighed on me today. Pray for strength and stamina to finish this race. May God be glorified through it all.

By the way, this pic of Tyler was just too funny to not share. Trent had the same look, but he's on video. Use your imagination. Those boys are so funny.

Merry Christmas and Blessed Times!
Love,
Mom

Friday, December 24, 2010

Day 50

Christmas Eve. Kelsey had a stable temp night. She was coughing a bit this morning which caused her to throw up a little. She is getting 2 units of blood. She is getting a double dose of GSF which is suppose to boost her absolute neutrophils, but it isn't. She is very neutropenic. She doesn't have much of an appetite, so this is very hard to get her to eat. I tried some of her favorites, but they just don't taste good to her. Everything sticks in her mouth. So far she's eaten diced peaches and jello, but not a ton of calories there. She's been tired, but aware. Her catheter is causing her difficulty, and she talks about it all day long. It has to be there not just because she's not mobile, but also because of the bladder virus. We got her out of bed briefly today so she could stretch and take a few steps. She maintained her temp. She is having a lot of pain in her cath area, so taking some pain and numbing medication. I pray for a restful and uneventful night for her and Alex.

Tracy did the morning shift until he went to the Blood Bank. Tyler and Konner took the next shift. I was able to spend the morning getting ready for Christmas Day for the family. Tracy spent 80 minutes donating platelets today. It is an apheresis process, so out one arm through the machine to extract the platelets, then returned in the other arm. He did great and received his t-shirt. He won't know his typing until Monday. Tonight we had a very nice dinner at the Inn, carolers, then Santa by the fireplace. Santa came by to see Kelsey, but she was in a great deal of pain, so that didn't work out. There are very thoughtful people who take care of those staying at the Inn, and do an awesome job of making sure there is a Christmas for all the kids and their families. We are thankful. On Christmas Day a brunch is served at 10:00, Santa comes again by the fireplace, then Debbie and family will come up, a dinner is served at 3:30. We will all be coming over to Kelsey's room throughout the day, so pray the staff isn't bothered by our numbers that day. They have limited the visitors to a number not conducive to our family size. We are doing our best to stay within these limits, but hey, it's Christmas and that is a family day full of togetherness.

Please pray our family as we deal with the loss of my father last Dec. 26th. I was talking with my sister, Angie, tonight about how to honor him and his legacy. For her and those that spent that time with him in those last days I feel it's tougher for them than me. I didn't see what was lost. I don't have those memories of him. We are making new memories. We want to create new memories with Grandma and still honor him. Pray for all of us as we may have different needs or thoughts on how that might look. I pray that we sense Jesus in everything we say and do and that Grandma will feel the love that is surrounding her during these days.
Blessed to be followers of Jesus.
Blessed to have the family we have.
Blessed to have the friends we have.
Blessed to be where we are.
Blessed to be.
Love,
Mom

Thursday, December 23, 2010

A Daddy post

I just had to discuss just how wonderful the Lord is during our latest Maryland nightmare. I could say so much about the uncertainty, the fear, the stress, the challenge and the confusion on my part. But then I would have to mention the instigator of those areas. Let me instead tell you about the Lord's grace and peace.

The first day I arrived here, my prayer was "show me what I was to see." I saw a gasping struggling daughter struggling for her life against a pretty scary unknown situation. But immediately upon my arrival, the consistency of her failing began to show signs of God's relief I can only portray as miraculous. So as we viewed small successes overrun with massive attacks, I began to pray that God would daily show me some sort of progress. I tell you, it is incredible just how specific God answers prayer. First one thing would stabilize, then another, and as new issues would materialize, still little blessing would speak to my spirit. Signs of breathing stabilization, clear conversations with Kelsey when none of the doctors could find her coherent. Little short term memory victories.
Oh, this battle is not yet over, but my how there seems to be hope in so many places that I struggled to understand how she could possible survive and then following those times, how will she ever have a valid life, and then just how would she ever return to her normal abilities. As I continue to believe that we have a God of healing and restoration, please understand that my confidence in God's ability never failed but now I have been bolstered into a new hope that my hopes and my desires are truly His. Please keep agreeing with me that our God can rock any world situation and does indeed meet all of our needs according to the riches in His glory.
Dad

Day 49

Today more platelets came into the Blood Bank, so she had the lumbar puncture today. It won't get analyzed until Monday. The MRI will be done again, but I'm not sure when. It depends on her body temp. It hasn't recovered from yesterday afternoon. This is unusual. It generally recovers after 12 hours. Granted she has had a lot done to her, and the lower the temp, the more she sweats, the more she has to be changed, the more she is uncovered. She is losing a bunch of fluid from the sweating. Her sodium has been too high for a longer period of time also. She is more confused and forgetful in this state. Between Tracy, Alex, and I we have been able to get enough calories in her. Last night during her totally awake night, Alex had is hands full. She had to be talked to all night, explained to over and over again, and he was very close to her face. She said, "Get out of my face, Tyler." He argued that he wasn't Tyler. Then he asked her why she thought he was Tyler. She said that he was bothering her. This would be normal. Tyler is the antagonist. Then, he asked her where Alex was. She said probably at home or most likely working. He got out his driver's license, showed her, then it was like oh, ok. Poor Alex. It is really hard when she is like this, but she recovers. While I am writing this, her temp just hit normal. Now the vigil becomes even more critical to maintain it. They stopped the viral drug today. If there was any question yesterday, it became clear today. She went neutropenic meaning she doesn't have the immune system to fight off anything else. It currently cannot help with any virus or bacteria issues. They believe it will recover, but that it will take at least a week maybe more. During this time, it is a huge prayer request that the first viral drug she was put on, kick in to finish the job. By itself, for the 1st week it wasn't working on the spinal fluid and brain, only the blood. Now, the hope is that it has had enough help from the other one to work. Typically it works by itself as shown on other patients. But, hey when was Kelsey ever normal medically. She still is throwing all kinds of unknowns into her scenario. This is a very nervous time for the doctors and us too. They say that we will notice clinically if she worsens. Pray we do not see this at all. Pray that by Monday we still see improvement. Pray nothing else happens to her during this neutropenic time. Pray, Pray, Pray without ceasing. Pray that we have turned the corner for all things to become new. We found out today that one of her doctors is B+, so she went in to give platelets. Tracy has an appt. tomorrow to see if he matches her. He has a 25% chance of being B+. He is giving anyway, so a big chunk of his afternoon is spoken for. We were blessed with an extra room for a few nights. This is needed and welcomed. It wasn't anything either of us was worried about, and things always work out for the good. So, those of you that were praying unbeknownst to us, it has been answered. Praise God!

Karly had to say good-bye to Zach tonight, but only for 3 nights. They were so funny yesterday. They got ahold of my hair flattener. This is what teenagers with too much time on their hands do. They both came to dinner with straightened hair. They went over and showed Kelsey who approved. The jury is out with me. Zach was pulling it off pretty well, but I'm not sure about Karly. How did my girls end up with such awesome guys? Praise God!

All the family members are finding things to do everyday. The girls did cookie decorating today. I was able to go back to the Inn a little earlier than usual last night and snuggled with Kassidy while watching Santa Claus 3. That was relaxing. I'm looking forward to just having a break while Alex is holding the night shift, Tracy the early morning shift, and then I can loiter in when I wake up. This will all change on January 3, so I'll take it when I can. Pray that by January 2, the family can return to Muncie and feel peace in leaving. This will be extremely difficult for them... for me, too. So many things to pray about. Thanks for lifting us up.
Love,
Mom

Tuesday, December 21, 2010

Day 48



The kids made gingerbread houses. As I understand it, the boys' house collapsed. Funny, how the engineers of the group couldn't execute something magnificent. Karly and Zach's house is on the right. Konner, Kassidy, and Anna's house is on the left. Aunt Joanne and Grandma made spaghetti dinner last night. It is such a blessing to have Grandma around. She takes care of the food, laundry, and cares for the kids. She is my mommy, so she's a comfort also. Alan and Joanne took Konner back to Debbie's for two nights. They are all doing "horse". Konner has finally gotten comfortable with a horse called "Midnight". They will back up here tomorrow.

Kelsey was bleeding from several areas today, the blood bank didn't have any more platelets for her, so doing the lumbar puncture was postponed. She was given benadryl a couple times today which didn't allow for good food consumption; it made her tired. Her stomach has been hurting also. We have been fighting with the lower body temp since this afternoon. When her temp drops so does her mental abilities and reasoning. For the last several days the doctors have been watching her transplant numbers drop without much of a boost from anything. They knew that when they added the toxic drug to treat the brain virus this would most likely happen. It has been such a touchy deal to treat her. This is the drug that was started on the Monday before there wasn't much hope given by the doctors on Tuesday. They believe that since we saw an early response from it, it was the combination that has been improving her brain virus. The hope is that once this drug is removed, the first drug will continue to treat the virus, the lymphocytes and other transplant issues will be able to recover. This is critical for two reasons: there are no more cells available to add to her system that would match & if she doesn't continue to improve on just the one viral drug, they would add the other back and this wouldn't be good. It would really get complicated. The first virus-treating drug has yucky effects also, but they are better yucky than the other one. Need more prayers, more healing, more Lord. She is fighting. She is strong. For being in bed for 3 weeks, she is doing well with her legs and arms. Sometimes it gets fuzzy just knowing what to think. Did you all follow all of that? It is a conscious choice to live only in the day. I pray for you to be able to live fully in His presence each day. Kelsey still mostly knows where she is and still says that she wouldn't be any other place(if you have to be sick). She still knows that this place has given her a chance for the life she dreams of. Rejoice and be glad in it(all of it)!
Love,
Mom

Day 47

Today was a good day. Good because we had a Kelsey who talked, ate, did her therapies, and was as sweet as could be. The body temp remained constant all night and all day. We added a beanie and footies which probably helped. She was out of bed on her feet for about 10 minutes. She stretched and did 3 plies(Ballet term). The nurse heated up a few towels and robes which we applied to her back side. She only lost .3 degrees instead of 3 degrees. The IV feeding was stopped, and we were given a normal diet to work within. I'm not sure how we did, but I feel as though we pushed as hard as we could to get the calories in. She did meet the water intake. If we can continue days like this, she could soon make it back to her other room. She has her lumbar puncture tomorrow. Again, this will let us know the viral load in her spinal fluid and how well the medicine is working. There are some good theories about her body temp, sodium, glucose, electrolytes, and blood pressure. The best way to confirm this will be to get a PET scan. This can only occur when her sugar water is eliminated. This would be helpful information, so please pray for wisdom and guidance in this area. Alex arrived safely and is now going to be holding the night time vigil. Tracy is glad to be sleeping in a bed at night. They changed sleep chairs on him last night...it didn't lock in position which isn't safe for ICU patients so it was sent for repair. Boy, he didn't like the one they brought him because it wouldn't lay down enough. One of the doctors came in today and made a comment about how far we've come in the last 2 weeks. He said that it is hard to believe that 2 weeks ago they thought she was going to die. He also commented on the one other person who he personally saw recover from this(who wasn't near as bad as Kelsey). He said a year out he is still recovering, and it is a longggg process. We are not taken aback by this. Kelsey has always taken a long time to recover from anything. Plus, we are hopeful that God is not done, His timing is perfect, His healing will be complete. We will continue on this journey all of our lives. "Trust in Me with all your heart and mind, and do not lean on your own understanding. In all your ways know, recognize, and acknowledge Him, and He will direct and make straight your path." Proverbs 3:5-6

Love,
Mom

Monday, December 20, 2010

Day 46 pm




The crew is home. Looks like they had a happy time. Kassidy's favorite was the trains that circled under and around the tree. Anna's favorite was one of the awesomely decorated houses in a neighborhood they drove through. Konner's favorite was the White House. Tracy's favorite part was the man who was using several trash cans as a drum set. Figures it would have something to do with music. I haven't talked with Karly and Zach but my guess from the look of it was they just enjoyed being together.

Have a peaceful evening; the Koch's are!
Love,
Mom

Day 46

Kelsey was doing so well yesterday. This morning the overnight nurse who had her until 7:00am got her out of bed. She hadn't seen her for awhile and was so happy to see her doing so well and thought this was a good idea. This in itself may have not been the issue, but in combination with the bedside potty and how weak she is, it totally drained her physically and lost her body temp. By the time I saw her this morning, she didn't even recognize me. She could barely talk. Her body temp had gotten to 90 degrees Fahrenheit. I finally had them get her back into bed with the body warmer, and it has taken all day to warm her to 95 degrees. She recognizes us now. She can eat again, but it was totally frustrating. The day could have been better utilized for her betterment, but this is what we got. In the midst of this, Konner had been down on 1NW, she gave me a message that I should go down and get a massage. This was exactly what I needed. I got to unload some of my frustrations and relax. Praise God! Timing is really everything, and it must be God's timing.

The NIH Clinical Center has a trip to the National Christmas Tree tonight. Tracy, Konner, Kassidy, cousin Anna, Karly and Zach are going. I hope that they enjoy the outing and time away. The boys and I are holding vigil in Kelsey's room. Trent gave Kelsey a nice head massage. What good brothers she has!

I didn't do my usual devotional this morning, but Kelsey has a different one in her room. I just happened to pick it up tonight as we are chilling in her room. It is very reflective of the day. It said that when you are feeling sad, Jesus wants you to anticipate feeling joyful again. I had just said today that I can hardly stand feeling the joy and excitement that we experienced yesterday to only have the opposite today. Then I said, ..."maybe I shouldn't get so excited." I don't mean living in sadness. I don't do that. I have a lot of joy...I mean the extremes. It went on to explain how productive pain and struggles can be when you trust in Jesus. I know this to be true. But then it said it is like when a woman is going through labor pains and wondering when it will end, then the end result is a newborn baby. Kelsey was very much like a newborn today...all bundled up, smiling, and looking so adorable. Trent was telling her how she was like a cute baby all day. So no matter what is happening on earth, there is boundless joy in His presence. It sure does put perspective back in my day.
Love,
Mom

Sunday, December 19, 2010

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

Saturday, December 18, 2010

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

Friday, December 17, 2010

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

Wednesday, December 15, 2010

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

Tuesday, December 14, 2010

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

Monday, December 13, 2010

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

Sunday, December 12, 2010

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

Friday, December 10, 2010

Day 36

Let's just start with the jumping up and down good news! We got the results of the lumbar puncture showing significant reduction in the white blood cells. This confirms what we are seeing in Kelsey's respiratory and heart rates. When they gave us this news it was tainted with the news that they are seeing something new in the lungs, however, it still needs to be confirmed. They are going to repeat the CT scan tomorrow. If it looks the same as today, they are going to do a bronchoscopy. This makes everyone a bit nervous, because it means anesthetic. The MRI is holding steady...no new disease. We are getting our miracle! We have so many hurdles and such a long road ahead of us. She is still so critical and weak and sick, but we are headed in the right direction. The drugs she's on have such great risks, and her condition is rocky. Her organs, bowels, kidney, pancreas, liver, lungs, brain are all in some state of being not normal. The main goal right now is to keep the course. The brain is still the #1 concern. All other concerns are falling in the wake, but not being ignored. For instance, we have recommendations for the bowel issue. She is at risk now for a rupture. We pray that the easy fixes will work. So for all the above areas mentioned, pray for normalcy to return without any complicated drugs, tubes, surgeries, etc. Pray for all cells damaged during this infection be restored. We still need a miracle. Now, I just found out she has some bladder virus? I'm not sure what this is. Waiting for the doctor to come in and explain it to me. OK, he stopped in and for now it is another thing to just watch. WOW! I was saying to Tracy during dinner(by the way Steph made another good meal for us tonight)(What a blessing!) that what I would like to see when I walk over tomorrow is a complete full blown healing. Kelsey perfectly normal. We just can't get too overwhelmed with all of this. We are still living one day at a time. There was a puzzle started in the family room just outside Kelsey's room which has now been completed. Every time the boys get kicked out of her room for whatever reason, they head to the family room. They just got another 1000 piece puzzle to start tomorrow. Steph is making good headway on her next knitting project. We had two visitors today. Kelsey's Uncle Ridge was at Navy Medical today so crossed the street to say hello. A long time friend Rebecca Ewert who is going to school just a couple metro stops from here came by. It is always good for her to have visitors. It really was fun to catch up. The boys want the computer to watch a video series Steph brought, so I'm signing off for now.
Love,
Mom

Day 36 am

She is still breathing easier & easier to wake up. She is still very critical, however, we are encouraged that these new signs are showing an improvement in her condition. The lumbar puncture is over, so we should have results back by the end of the day. The MRI of brain is this afternoon and should have results for that by the end of the day. As always, giving platelets, blood, insulin, blood pressure med, seizure med, GSF shots, hydration, and electrolytes as needed...constant adjusting going on to keep everything stable. All the big dog drugs are on board. Carefully watching all organs; bowels are posing a bit of a problem so everyone is discussing what can safely be done not to rock her condition. She had a persistent area of pain yesterday, so if we signs that it is bothering her today, then more scans will be done. The waiting is really tiring. It is like hurry up God, but don't we know that God uses every situation to teach and train us. The devotional today was just what I needed to hear for me today. It is very cool that each word of God is useful to us individually in our own circumstance. It is everything to know that He cares and loves us. We feel cared for and loved each day. I am confident that this is His plan. May we walk in faith and trust all through this day.
Love,
Mom

Thursday, December 9, 2010

Day 35 pm



Everyone but Tracy and Alex went back to the Inn for a Holiday Party & Cookie Decorating. It was nice to sit down and be waited on for dinner by the Children's Inn Board prepared by the NIH Fellows with staff helping as well. We gathered up plenty of food for the boys to take to the hospital. As you can tell by the picture, dessert was gingerbread cookies with the creating taking place by us. Karly, hands down, was the best cookie decorator. Even though she cannot eat the cookie she took it and created a delicious specimen for her dad. Trent, on the other hand, planned on dumping as much icing on the cookie and then give it to dad to eat. He said let you all decide. She has been sleeping since we've come back. She had been feeling some pain in her right rib/liver area today and then tonight. They gave her some dilaudid. This is of concern because she hasn't had pain since we've been in the ICU, at least not any she had complained about. I'm sure there will be more investigating tomorrow. I pray for a peaceful, restful night. I pray that we may find Jesus in everything tomorrow.
Love,
Mom

Day 35

Stephanie stayed all night with Kelsey. Kelsey was up from 4-8am. Tracy made it over around 7:00 and was able to talk with her. Around 10:30 Neurology came by and woke her up. She was up around 2 hours again. This was a good time for us. She was a bit more vocal. What seems amazing to me today is that her breathing is slower when she is awake. She is really amazing. Doctors seemed pleased that we are holding steady. Again, every day is tentative. Every night, I am not wanting to leave her. I am not sleeping great, but need what I get. This morning, I woke with a start when I saw in my "dream" that her oxygen was dropping. I got up so I could get over to her right away. When I noticed Tracy wasn't in the room, I knew he was with her. That was a relief. I was all in a tizzy about maybe needing to put the breathing tube in, but was reassured by my devotional and then again by a nurse of 40 years that came and visited us this morning that the right thing to do for now is let her be. Today was very uneventful medically but for the family it was great. Tomorrow she has another lumbar puncture and MRI of brain. I'm not sure what I'm feeling. It is going to happen. It will give us some kind of news. I want a miracle!

Having Steph here has been just what God deemed I needed. I told her that I didn't need anything & that I needed to be here with Kelsey, however, just having her here has added so much to each day. It's been great for Kelsey; our conversations have been much more interesting. Kelsey enjoyed listening and adding comments. Now with the family here, she has just found another niche. She cooked lunch for everyone. Tomorrow she has a dinner planned. This is a huge blessing and allows me to spend most of my time with Kelsey. That is what I needed. I know that God is answering so many prayers. I can't even imagine all the different prayers offered up for us, but I know that He is answering them. Our needs are being met. I have answered people when asked what they can do for us during this time by saying, "Just pray and listen to how you are being led." Thank you to all you faithful and obedient brothers and sisters.
Love,
Mom

Wednesday, December 8, 2010

Day 34

The family arrived shortly after 4:00. Since Kelsey was getting a breathing treatment which required isolation, we ate at the Inn before seeing her. I cannot tell you what a relief it is for them to ALL be here. It is just awesome to be together. It took several hours before we were able to wake her up. Since then, we enjoyed singing in her room, telling some jokes, and making silly faces at her. She hasn't said more than I Love You which is fine with me. What great words to choose to say. She is great at copying faces and gets tickled at especially Konner. I'm getting ready to leave and ready the rooms for sleeping. Pray for another night without the tube. I don't rest at night with this hanging over us. I just hope that I can sleep enough to not get sick. Everyone is really exhausted so may tonight be restful for us all. May she get through another night. Come Lord! More Lord!
Love,
Mom

Day 34

I walked in to see her this morning to find no tube in overnight. Yeah! Just need another 5-8 hours where the family can see her so she can talk. Each day we move forward or have a sense of improvement is good for our hearts. Still hoping for a miracle. She is certainly remaining stable today. Breathing is very heavy, but she isn't gasping for air. I had trouble sleeping last night. My eyes are puffy. My head is hurting. I'm sure my body is tense, because the situation is tense. This morning in the shower my mind would wonder to cleaning out her room. I prayed for God to quit letting these negative thoughts intrude into my mind. May my mind be filled with hope and a future. Come Lord! More Lord!
Love,
Mom

Tuesday, December 7, 2010

Day 33

Had a very hard meeting with the doctors, but we made a plan that everyone is comfortable with. They will give her a breathing tube when they feel it is necessary. It actually was going to happen right after the meeting then she surprised me and everyone this afternoon. I woke her up right after the meeting. She engaged us, she talked, her eyes were open. We went through the gift box she received today from Brandi and family. The box of stuff was awesome. We went through every item, she approved! I loved everything...perfect stuff! In fact, she picked out the purple nail polish, and Steph painted her toenails. It gives her a focal point when she is awake. I don't know what will happen tonight or tomorrow morning before I get to her room, however, my desire would be for her to make it until tomorrow afternoon without the tube so I could wake her up in time for her family to engage her. We saw a "tiny miracle" today. More Lord! Come Lord! This is not something anyone has seen before. Her infection is extremely rare, the amount of areas infected in her brain are worse than they have ever seen. The recovery for this is not expected to be very good. What a perfect time for a miracle. It would certainly give God the glory. That is where we are at right now. Pray for the family as they see a very sick Kelsey. It will affect them. Praise God that everything just fell into place for everyone to come. Once again, Wabash College, Tyler's school amazed him today. Before he was called or he even read the blog this morning, his professors knew what was going on, contacted the Dean of the school who approached Tyler as he got to class this morning. They told him it was ok to go; they would deal with finals later. I hope Trent had as much success. We will soon be together...maybe 18 hours. Please pray for that miracle. Now is the time! It is crucial to see improvement soon. Thank you for all your prayers and encouragement. As always, we are so thankful.
Love,
Mom

Day 33

This morning the official MRI read is that the brain infection has spread a lot. It is affecting her frontal lobes now. This is where her personality & movements, among other things originate. One thing they are telling me is that once these cells are destroyed by this type of virus, they're gone. The question becomes can this new drug work fast enough to have a Kelsey. It needs to kills the virus quickly. Will the virus get to the part of the brain that controls her breathing? She may go into a coma, so then what? I've talked with Kelsey best I can and her wishes are to not go on a machine to prolong her life. She does not want a vegetable Kelsey. The miracle has to come now if we are going to get one. It is close to the end by all medical standards. We are still hoping, but weeping is here. Big conference call to Tracy today. Our God is a mighty God. He reigns over all...over Kelsey in all her ways. Oh Lord, we ask for that miracle in your mighty name. Lord, she will come to you without a fight. We have given her to you a long time ago. She is yours. She has always wanted to dance in the heavenlies. The fight isn't ours. My hope is still present. May your will be done.
Love,
Mom

Monday, December 6, 2010

Day 32

After today's news, Steph and I were eating dinner at the Inn. I asked her, "So what good news did we have today?" It took a minute, but here it is. The doctor told us that as far as her lungs are concerned, she wanted to say it was better. She said that is has only been 48 hours since the last CT, and she really wanted it to be better so she thinks she's seeing it be better. Someone else will have to tell you it is better. They didn't have to intubate her. You might ask how has it come to this. Last night and this morning her breathing is heavier and for longer periods of time. Her shaking has increased. She isn't opening her eyes much. You really need to loudly get her attention. She's not really sleeping all day just looks like she is. She's just laying there shaking & breathing heavily, eyes closed. Besides the CT of the lungs, the head, abdomen, and pelvis were scanned. They found an ileus which is an obstruction of sorts in the intestine. It is part of the GVHD. It could become a problem. She cannot eat or drink because that could make it worse. The hope is that it won't get worse. If worsening occurs, then they would be compelled to start a higher dose of steroids which would not be good for the brain infection treatment. After the scans this morning a lumbar puncture was performed. Because she was worse, the suspicion was the infection was worse. Sure enough, it revealed an increase in the infection in the spinal fluid. The supposition is that the med is not effectively crossing the blood/brain barrier. The other drug which treats this infection has been added. It's side effects are not good. They carefully weighed the benefits and risks. At this point, the main goal is to treat her brain. Basically, I was told that if it means losing a kidney to get Kelsey's brain back, then so be it. We all agree we want her brain back. She had a MRI this afternoon. I haven't heard about it. It's been a lot to process.

As long as I process in my head, I do pretty good. I keep trying to deal with just the day we are in. No what ifs. People ask me how I'm doing. Well it sucks. I use that word because it is a Kelsey word. I totally get all of it and am not in denial. I choose to deal in the now, in our hope, in faith, trust, positive moments. Your encouraging words help me so much. The prayers you send me help me. The visions & the truths you share help me. I thank God for you, our friends, our brothers and sisters in Christ. That is what brings tears to my eyes. How much we are loved. That is what makes me weep.
Love from a grateful mom,
Mom

Sunday, December 5, 2010

Day 31

I was unsure what to say the last couple of days. She remains the same since Friday's seizure. She hasn't said too many words. When she does say something, it is barely audible. She occasionally will smile. She certainly gives puckering lips to smooch. She is shaking, sweating, and breathing heavily. She has been on oxygen since Friday. They took it off today while she was sitting in a chair. She seems to understand what I'm talking about, just won't answer questions. She will nod and get big eyes in response to some things. Medications are being adjusted constantly to maintain status quo. All the teams will be back for rounds tomorrow. She will be getting CT of lungs and MRI of brain to keep an eye on both infections this week. Other than that, who knows. Please pray that every day we get some good news toward her healing.

Stephanie Cullison Stein, a lifelong friend of Kelsey's, came today. I think that as the week passes Steph will be able to help with physical therapy and massage. I also think she will be able to stimulate her brain. I pray that God uses her in a mighty way.

It has been a stable weekend, so Praise God. Tyler celebrated his 21st birthday today. He was able to see Josh McDowell on campus today. I told him that his dad and I saw him when we were in college too. I wonder if that made him feel old. It didn't faze me:)
Thanks to all who made his day special.

The Gingerbread Houses are displayed for the next couple of weeks. Different floors make elaborate houses with a variety of themes. We vote for our favorite. I took pictures of my three favorites for Kelsey to vote on. I will show them to her everyday and make a tally as to her favorite. There were carolers by the display yesterday when I took Kelsey down there in her wheelchair. It is festive here. I love that.

I'm a bit numb, maybe tired so am not really feeling too many emotions right now. Maybe because the weekend was fairly quiet. Please pray for a highly encouraging week full of grace and mercy AND HEALING POWER!
Love,
Mom

Friday, December 3, 2010

Day 29

It's a wonder I am keeping track of these days. This morning she seemed ok, not exactly normal, but couldn't quite put my finger on it. She could answer questions this morning pretty much accurately, but then forget which is typical. Neuropsych came in to assess her. She didn't know what a pen was which she knew all week. She couldn't write the alphabet; she was a bit erratic with the questions and mood swings. Around 12:30 she had a seizure. She wasn't responding to me. Couldn't answer any questions, just stared. Her personality was a bit too nice, then mean, then nothing. It went prolonged for awhile, then the doctor just gave her atavan to help her relax and stop the seizure. While this was going on, they did another EEG which indeed revealed the activity in the temporal lobe where the infection is. It was a confirmation for them. They had to cath her while she's sleeping. When she wakes up Kelsey my dear will not be happy about this. The fact that she has only slept 2 hours since Monday definitely increases seizure activity. This induced sleeping could be really good for her. They had to take away 1 nausea med(it increases seizure risk), so pray the nausea doesn't return with this reduction. Her kidney is suffering with all of this. The longer she is on the medication to clear the viral brain infection, the more chance of damage to the kidney, but if it can clear quickly, then it could be reversible. Her sodium went on the high side today, so dealing with many issues with this. She on oxygen today. Not quite sure what that is about, but she's having a CT of the chest tomorrow to determine if the lung infection is resolving or increasing. If increasing they're doing a lung biopsy. If resolving, on the correct drug. A blessing is arriving this weekend. Kelsey's long time friend, Stephanie Cullison Stein, who is residing in Idaho is flying in this weekend courtesy of Pam and Tim. Steph will provide some entertainment to her when she wakes up and returns to yesterdays Kelsey. Since she will be on west coast time, she will stay up later than me, so Kelsey can have longer care from someone she knows. Sister Debbie is on her way here and bringing a "feast". I saw some 1NW nurses today who said I looked like I lost weight. I don't think I have, but still thought I could lose some pounds. I'm on the ICU diet.

Had a great devotional today that re-encouraged me. Have to keep remembering I'm in a battle. Thanks for lifting us up in this time of struggles and rejoicing with us in the miracles.

Love,
Mom

Thursday, December 2, 2010

Day 28

It's been 4 weeks since we began this new cell journey. We expected infections and complications just didn't envision all of this. It wouldn't have changed our decision. She wasn't living a life, breathing and being yes, but not living so this was her chance. This is a lot to handle. Fortunately she doesn't know what she is enduring. Me, however, am experiencing a less than hopeful day. She had a CT of her chest this morning which revealed what looks like a nasty fungal infection. It is probably considered the worst one. It isn't confirmed yet. They went ahead today with a triple team of doctors in the OR. First the bone biopsy, then the endoscopy, finished with the bronchoscopy. Maybe more answers tomorrow. Meanwhile started the drug to treat the fungus. I've had these scenes of her dying, then battle them with the vision of her speaking in front of the crowd in a white lab coat. I know that God can heal her and listen to all the hopeful, encouraging words from you all which helps me so much. Today was tough. So you can all hope for me. She has gone 4 days & 3 nights without sleeping. She has finally closed her eyes for going on 15 minutes now. She needs the rest. She has been less perky and bubbly today. They will be starting physical, occupational, and cognitive therapy soon. This will help keep her muscles from atrophying, her hands busy, and her brain exercising. Sister Debbie came today and as always to my rescue on this less than happy day. She came bearing a chocolate milkshake which I have been requesting for awhile, soup, salad, and bread from Panera. It is good for the soul; it has to be. Oh, and a cute little fiberoptic tree which brightens the room, some stuffed Christmas animals(the moose sings), and a chocolate advent calendar. A chocolate and scripture a day must be good for the soul, too. She brought Kelsey the chicken fries she likes, but currently isn't allowed to eat them. She gets one more day, then their mine. (She cannot eat food that is more than a day old.) Friends we've made here have been visiting us. This is encouraging and supportive. That is all I'm good for today. Thankful as always.
Love,
Mom

Wednesday, December 1, 2010

Still Day 27

Got down to OR, signed consent, she had a fever, was shaking, both knees red and hot, and had been coughing a bit more. Since the bone biopsy and endoscopy weren't urgent, they have postponed all procedures. The best guess presently is Graft vs. Host Disease(GVHD). The problem is it is not presenting like GVHD or an infection. Took 2 biopsies from from the left knee area. Blood cultures for fever and adding an antibiotic. Had a chest x-ray. Wait and see what pans out tomorrow. Her nausea is final under control with the right combination of new drugs. She ate jello last night and liked it. That is something she typically would never order. She has been a little more lethargic today, but she hasn't slept for 2 nights. That also increases the risk for seizures, but they cannot give her anything to sleep either. The GVHD typically is treated with high dose steroids which causes more risk for the viral infection in the brain and risk of seizures. They are running on a very thin line. Everything they do causes risk to her in one way or the other, but there is no other choice except to deal with what comes each day. For every good thing that a drug does, it has risks. Kelsey is amazing. Even when she doesn't know the answer, she is cute, playful, and witty. She has even begun playing games testing us back. I don't think she knows it's a game, but it is the clever Kelsey in there. One of my mom's friends shared that this could be just God's way of sparing her all the pain she's going through. Could be. Only He knows the path she is on. Whatever it is, He is in control. We still find laughter every day...really we do. I think that even the doctors see the joy we are experiencing. She has the most pleasant demeanor, smiling like a Cheshire cat, mostly bright eyed(until today), and just cute to watch, and funny to talk to. What more could you ask for...yeah, yeah....good health. It's a coming!
Love,
Mom

Day 27

It was a long day yesterday. She's in hyper-mode.She cannot stop moving. She wants to get out of bed, go to the bathroom all the time, plays with her lines, constantly has to be watched. Since she doesn't remember anything, a lot of repeating and explaining. She asks why much of the time. She was at grandma's yesterday. Talked with people who aren't here. One time she said, "This room is boring. I don't think you should buy this house." Today she is in a rec room. At least, she's "not" in a hospital. They have a tech that stays in her room at night. I am with her all day. The nurse monitors things from just outside her room. The correct drugs are on board. Her sodium is at normal now. Hopefully we will see some improvement from this. She was not near as random with the crazy stories yesterday. She cannot remember ANYTHING that is happening or has happened. They said that she won't remember things during this time frame say a couple of months. It would take months for her to layer new memory and this is 50/50. We remain hopeful with faith and courage. She is super pleasant to be around. Smiling and cheerful. She hasn't complained of pain or of anything. The nurses from 1NW have been visiting. We have so much support here and of course from home and from all of you out there who are faithful friends in Christ. I so appreciate your encouraging words everyday. I look for them and need them. I know I am not alone nor do I feel alone.

We skyped home last night. She talked with Dad, Trent, Karly, Konner, Kassidy, and Grandma. Tyler and Alex each had an interesting conversation with her on the phone. Aunt Debbie drove up yesterday to help me with her and brought me a few food items. She is a huge blessings. Sorry, Aunt Angie and Aunt Joanne, but for Kelsey right now everything is out of sight out of mind. When you get here, she will say she likes you too and give you big cheesy smiles.

She is getting her bone biopsy and endoscopy any minute, so I will finish here for now.
Love,
Mom

Monday, November 29, 2010

Day 25

WOW, we are in ICU again. Another serious condition has come about. It is weird how you can look back at something that's happened and when it didn't make sense at the time, it does now. Yesterday, Kelsey commented between ins and outs of consciousness and puking, that there were a multitude of words that were buzzing through her brain making her nauseous. It didn't make any sense, but I knew it meant something. It was just too weird. This morning I was called around 7:00ish to come over because she was disoriented. She sure was. Her sodium was low, blood pressure high, fingers tips still purple, nausea & fever present. She was moved to ICU and will remain here until her electrolytes stabilize. Her morning consisted of chest x-ray, head CT, MRI of brain, echo-cardiogram, EEG of brain, lumbar puncture, 2 biopsies of fingers, another mid-line pic put in. A lot of IV medications being pumped in. The diagnosis came is as suspected. It is a viral infection of the brain. It was also present in her spinal fluid. It is found in the memory part of her brain. She knows me, herself, most of her doctors, not where she is or what is going on, she knows what a pencil is, and stuff. She doesn't know what year it is, sometimes she knows her birth-date. You cannot believe most of what she says because she doesn't know what is going on. She told the doctors that she had a good day yesterday. She ate 3 different kinds of breakfasts this morning. She talked with Karly this morning. NOT It is hard to watch. Fortunately, she has said the cutest things. I thought of how much fun Trent would have with this. The two of them would be hilarious together. We have hugged and smiled at each other a lot today. This is a serious situation that will take a long time to treat. She has had a few small seizures where she just quits speaking mid-sentence. They started an anti-seizure drug. This is one thing they are quite concerned with. They don't want to see a seizure that is difficult to stop or where she has to be intubated. Their fingers are crossed, but we have prayer. They cannot give me a prediction on anything. They say that each patient reacts differently. So once again, we cannot look any further than tomorrow. I am grateful for each day I have with her.
Love,
Mom

Sunday, November 28, 2010

Day 21-Day 24



Thanksgiving Day was wonderful. We shared a meal with immediate family, uncles, aunts, cousins,and second cousins. Kelsey's favorite was mashed potatoes with gravy. It was a slow beginning that morning. We had planned on leaving at 10:00, but Kelsey was nauseous and her head hurt so she was moving rather slowly. The morning IV meds slowed her down, and then they added one that didn't finish until noon. Fortunately, the meal was planned for 2:00, so we made it in plenty of time. Among the folly for the day, was a well decorated house for my 50th birthday. The girls hooted and entertained themselves with printing pictures of me when I was around 12. They were taped all around the house even the bathroom and inside the refrigerator. After the meal, the boys found the theater wigs and "put the band back together". This was so much fun to watch. Oh, by the way, the other photo's caption is, "Which one is Debbie?" We had so much fun. Kelsey slept much of it, but we took videos of "the band". When she returned Thursday night, her platelets were very low. So premedicated her, and put them in. I was with her until 3:30am. Friday and Saturday were fairly good days for her. However, her neutrophils dropped to 240 Saturday night so she had her shot. Today didn't start out too horrible, but the rest has been very horrible for her. Her counts are pretty good for today, but she has been extremely nauseous, the most since we've been here. None of the nausea meds, dilaudid, or atavan have made it better. She has been puking all day. Finally at 7:00ish, she fell asleep. I had been informing the nurse about this unusual development, finally the resident came in. Eventually, I glanced over at her and noticed that her fingertips are dark purple. I talked with the resident about the unusualness of the day, she called the attending who came in and has seen it for herself. She has conferred with the Pediatric Oncology doc who has seen Kelsey from the beginning. The best guess right now is acute graft vs. host disease. It could be an infection and gvhd. They are treating gvhd with a large dose steroid. Her blood pressure is up. She has hit a fever, but blood cultures were already drawn. The med that was changed on Thursday is restarted for infection. Her platelets are very low again, so more of that tonight. This is going to be another long night. I pray that I will get to sleep for some hours tonight, so I can be a good caregiver. I was already tired today from lack of sleep from family being around...ya know soaking in all the moments I could. She has requested prayer for all things and trusts in this.

Karly and Grandma's flight arrived home as scheduled. Tracy did the mammoth drive today and has made it home safely. Hopefully took a nap, then proceeded on to the airport to collect those two. All should be home as I am typing. We left each other already starting the countdown of three weeks until they return. Tracy and I were able to leave Kelsey on Saturday in the capable care of her siblings while we shopped and enjoyed each other.

As she is struggling through this period, helpless, miserable, and weak, a brief thought comes into my head thinking what have we've done. Then I'm reminded that this decision was the Lord's. Her life is the Lord's. The NOW is the only place to begin anew. Many things are beyond us, but I am still rejoicing in the present. Some of these days are very tentative, some seem more certain, but all are possible to get through with God.

"For nothing is impossible with God" Luke 1:37
Love,
Mom

Wednesday, November 24, 2010

Day 20


She started the day early with an MRI of the brain which looked good. This meant no lumbar puncture:) Her head pain was pretty bad until 2 doses of oxycodone finally cut through. The skin biopsy from yesterday revealed graft vs. host disease. This is the cause of the rash and probably the liver counts. She is already on the correct drugs for this, so if it gets worse then there would be an increase in the anti-rejection drugs. She will be allowed to go with us to my sister's for Thanksgiving with strict instructions as to what to watch for. YEAH! They are changing one of the antibiotics because the sputum culture showed something that needs a better coverage plus she may already be resistant to the one she is on...this is still pending. The new antibiotic makes Kelsey's body hurt worse if this is possible, but that is what she has to do. She is still on respiratory isolation pending the nasal wash culture. Her counts for the most part are just where they need to be.

Everyone showed up safely this morning which made for a good day. Kelsey had dad buzz off her remaining 1 inch of fuzz. Kelsey buzzed dad, Tyler, and Trent. It was a bunch of fun. The best time was the photo shoot afterward.

Everyone is tired. I'm up later than usual and just need to get everyone settled in. Kelsey is in sleeping mode for now. Thanksgiving will certainly be what the Koch's are doing tomorrow.

Blessings and Happy Thanksgiving!
Love,
Mom

Tuesday, November 23, 2010

Day 19

Everyday starts with a migraine and concern over such. Kelsey texts me this morning and says, "I need my mommy." The rash is the same. The dilaudid and oxycodone don't cut it, so they are working on a better drug. Since the transplant the head pain has been much worse. Several thoughts come into play...drug related(from anti-rejection drug), sinuses(but look better), brain issue, meningitis has to be ruled out so performing all of the tests that come with ruling things out. The rash can be related to several things, but 2 most likely causes are Graft vs. Host Disease or reaction to the IV antibiotic. Again, it is more a ruling out process. A skin biopsy was taken this afternoon. The nasal wash is still pending. We are still waiting on the news about the chimerism. We are hoping for the Spanish cord to have a majority of cells present, but are not opposed to the German cord either just as long as it isn't Kelsey's cells. She received her immunoglobulins today which went well. Except for her liver counts which are still rising, her counts are just where they need to be at this day into the transplant. She is mostly just worn out and needs a break. The doctors are trying very hard to get her on pass for Thursday. We pray that all things pending for tomorrow come back for the positive. Please pray with us.

Tracy is making the trek out here with everyone else so pray for safe travels. We are excited to be together. I suppose there will be much squishing going on tomorrow. Another blessing today, Kelsey received an extremely cute, soft, loosely knit scarf that immediately was wrapped around her bald head and has looked so adorable on her today. Love the look. Although it is cute, she is not into sharing the photo with the world just yet.

Karly had a good check-up. She has been anemic since the lymphoma last year, so they checked again and have put her on some supplements. This may help with her tiredness. Her ear tubes were just beginning to infect, so antibiotic drops started. Found out why her skin was getting worse and have a plan to correct this. We talked with the transplant doctor about when Karly will be started. We have a tentative plan to start the eligibility week the second or third week in December. This would mean the transplant would need to be started within a month after we sign the paperwork. This is a loosely based plan depending on how Kelsey is doing and if anything needs tweaked in the protocol. He reminded me that this is the first cord blood transplant for this disease in the world. Also, the type of conditioning they did has not been used by the other related and unrelated transplants for this disease. So many factors, in theory, and of course experience went into the planning for this, but no one knows what will happen. He wants to make sure Karly will have the best outcome after his experience with Kelsey. Sounds like Kelsey, once again, is a guinea pig, but a cute one. She doesn't mind. She knows what this means in the long term.

Pretty cool. In the devotional today it talks about being ingrafted in Christ. We are to marvel at the wonder of being a new creation, grafted into the Messiah. Kelsey is already ingrafted in Christ, and now she is being engraphed physically. Just a neat vision.

Love,
Mom

Monday, November 22, 2010

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