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

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

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

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

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

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