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

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

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

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

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