Day 88

This blog brings a huge heavy heart. Kelsey went to the ICU around 2:00am. She had very low blood pressure and needed oxygen. Early this afternoon she went back into the operating room to look at the gut, sinus, and lungs. She is not doing very well to say the least. She has been intubated and is on a respirator. Her blood pressure has not stabilized. She is in septic shock with multi-system organ failure. This looks very grim, however, has she not survived the last crisis with a miracle. So I am pleading again for that miracle to bring her back. The next few days are critical. If they can stabilize her, they can move forward with chemo and the transplant. It was unique today in that when I told her she was going to the OR she usually asks to be drugged real well. This time she told me she was scared. I asked her, "Scared of what?" She said she didn't know. I told her there were only two outcomes...either she would come back to me or she would go home to Jesus. She said that she would like to go home to Jesus. This made her smile. I am grieving, somewhat already feeling a loss, but I haven't lost her yet. I know that God is in this. Medically, it does look grim. This is still when Jesus shines the best. I am glad that Kelly and Angie are here. I feel conflicted about whether to spend the night at the hospital with her, but I know that I cannot go without sleep if I am to help her fight in any way. She needs me. I know that even when she is sedated she can hear me. Pray for wisdom. Tracy is making plans right now to come out ASAP. The kids will remain home. I am a mess, need strength and reassurance. I cannot finish this right now, so all I can say is pray for a miracle.
Love,
Mom

Day 87

Kelsey has finished 2 out of the 4 days of chemo. She's gotten sick a few times each day. She is still vomiting blood from her stomach when she gets sick. She is very tired. We completed her move to the transplant room today. The preliminary report on the lumens is no growth. They will continue to check this everyday and look for growth; sometimes it takes days, but it appears like the medication is working. This remains a pray request for several weeks to come. Pray for the donor. This week will be very busy as Karly is getting her stuff done Monday and Tuesday, so I flit between rooms to catch all the doctors. My plan is to work on taxes, fafsa, and css profile also while I have help during the day and night. I only have 2 weeks to get it done, so it seems to be a perfect time to do it this week while Kelly and Angie are here. Kelly will be going home sometime right after the transplant. This will leave Kelsey alone at night. I'm not sure how I feel about that. My thought processes go something like this. I will ask for God to provide the next night-time caregiver. I must accept that this may not be His will and of course will accept His provision also. I think that if Kelsey is left alone or with a stranger, then God will provide me with a trust in Him to keep Kelsey safe....how novel is that. He will keep my mind at rest at night, the dreams sweet, and the body still. So, please pray for His will to be done in this whole area of a night-time caregiver. "In the morning, O Lord, You hear my voice; in the morning I lay my requests before You and wait in expectation." Psalm 5:3
Love,
Mom

Day 85

Even with her all-time high fever last night, the results that one of the new lumens is growing bacteria, and a few sores in her mouths, today was a good day. She had a PCA started yesterday. This is a personally controlled analgesia devise. It gives a low constant dose of pain control medication with the ability to deliver a bolus(a higher dose) every 15 minutes. This has seemed to be a wonderful move for her. She rests better. She isn't getting those high pain levels, and she is brighter-eyed. She actually ate a good amount of food for her. She was alert more of the day with many-a-smile today. The best news of the day was the results of the lumbar puncture revealed that the viral brain infection is at the lowest it has been since it was found. With another week to treat it before the new cells go in, it is expected to be even lower. This gives us a good start for the new cells to take over anywhere from 2-4 weeks later. They have started treatment for the bacteria growing in the line, so pray this is killed before the transplant and stays gone. The treatment for this particular bacteria is an antibiotic that suppresses the bone marrow. The transplant is moving forward on schedule. We move to a transplant room over the weekend. Chemo starts tomorrow. She is a bit nervous about feeling sick, so this is something you can pray for. They do an excellent job of administering pre-meds, but one never knows how one will respond. We found out today that our donor is a young man(around 20). I am so grateful that he is going through such a procedure. He will be in pain, and need to stay overnight in the hospital. We wrote him an anonymous letter today that will be delivered to him on Friday. After one year, if he agrees, we can communicate with each other. Pray now, that God's timing for this will be amazing. All in all, we felt peaceful and happy today. Even with the bad news, it felt positive. We could say that our peace was an encompassing gift independent of our circumstances given by God. May we all rest as peaceful tonight. Remember that Kelly's night is our day, so pray for her peaceful night for tomorrow morning. Thank you Jesus!
Love,
Mom

Day 83

Kelsey is back to 1NW. She feels so much better when we return here. We only had to leave once for the MRI. She used her phone for the first time in a week; she asked for real food...Chinese. I had to order in for her. I guess it makes sense that she feels better. You are only in ICU when you are very sick. So, we are thankful she gets better and is sent back. Thank you for all the prayers. Prepping for the transplant is moving along. She still has several tests tomorrow...CT chest, EKG, Pentamidine Lab for a preventative breathing treatment in a negative flow room. Pray that after all that she will return to her room and not lose temp. Kelsey continues to impress us all. She has been through so much and is still fighting. Did I mention to thank you for all the prayers?

I was reading my devotional today, and it struck me that when I think about Kelsey she has already accepted living a problem-free life in heaven. In fact, there are times when this is what she prefers. BUT, she is still seeking Jesus' plan for her. She doesn't think He is done with her just yet. Her light is from Jesus, and it is now shining very brightly in and through the darkness of the world. May you find your purpose and peace through finding Jesus in a deeper way.
Love,
Mom

Day 82

Yesterday she had the HIDA scan of her gall bladder. It took around 3 hours from the time we left her room and returned. Good news is that it is fine...no surgery needed. This is a sigh of relief. Fungus in lungs is the same as fungus in sinus. Not a surprise, but not happy news. However, no change in what we are doing. We went over her regime for the new transplant and signed the papers. YEA! Today sounds kinda busy. She will be getting her packing out, granulocytes, and a lumbar puncture. Holding off on MRI until tomorrow. Chemo starts on Saturday. She will get 4 days of two kinds. On Feb. 2 & 3 she has two days of rest(whatever that really looks like). On Feb.4 she receives a whopping dose of bone marrow from an adult donor who is willing to go under anesthesia. This is a big deal because in order to get enough marrow for her, he will have to get bone marrow aspirated from like 10 spots. This is a blessing for us, and I hope that someday we will be able to meet this person. Then we start the counting again. We will make it to Day 92 before we start over. Feb. 5 will be Day 1. The standard stay is 100 days. Everyday, I prepare by looking to Jesus to be in every thought and procedure. Everyday, I have to take a deep breath. Everyday, I struggle with wanting her to be well enough to come home. I want to come home. I feel bad about missing key moments in the kids lives. Trent turned 18. Tyler turned 21. Karly's living a "well" year. Missing prom and prom dress shopping. Little girls growing up. Trent's senior year and graduation. Seriously will be close as to whether I will make it home in time. Looking for the last possible date to accomplish this without hurting chances of family coming here over Memorial Day if we are still here. I know everyone understands and that all will be well, but it doesn't change what I'm missing. Then again, they are missing Kelsey, and I get to spend this time with her. I am lucky to be the one. God has a plan, and we are being obedient in this. The more time you can spend with Jesus, the more abundantly you can live. This is so true for all of us.
Love,
Mom

Day 80

Kelsey had a very peaceful night the last 2 nights. She is remaining pretty stable according to her stats. She is pretty alert mentally, but still not remembering things that have to do with short term memory. I saw some pictures of what they were pulling out of her lungs today. She had one main branch of the lung that was blocked by a huge clot. It was like a finger but twice as long. It was amazing that she was breathing as well as she was. The sticky stuff in her lungs was perplexing and fungus was seen. Pretty much there isn't much else to do except maybe increase dosing which could cause kidney and other issues. The granulocytes and new transplant is what she needs now. She has another swollen area on the back right side of her head. She had CT of head, neck, chest today. They cannot say what is going on with this, but it is another thing to be watched. Tomorrow morning she has a HIDA scan to see what is up or not up with the gall bladder. No one is very excited about doing surgery on her. She should get another round of granulocytes. The packing in her sinus should be removed so she will have her other airway back which she will be very happy about. If all continues well, we hope to be back to 1NW on Monday.

Kelly is doing an outstanding job with the night shift. Pray for her sleep to return. She hasn't been getting very many hours. She awakes alert after 4-5 hours, but knows that this isn't enough. We en!joy some catching up just before I leave in the evening and just before she leaves in the morning. This is a fun time to hear the stories she has shared with Kelsey and of course the happening with Karly and Zach and crews at home. I skyped the kids and Tracy today. It makes Kelsey and I smile when we see their faces and hear what they are doing. Karly, Konner, and Kassidy make faces at Kelsey and she makes them back. It is cute. I am thankful for these small moments. I am thankful for all your prayers for us. It is not by coincidence than we are still surviving and by that I don't mean just breathing. It is by the provision of our God through all of you.
Love,
Mom

Day 78

Thursday was a tough day. After 6 1/2 hours in the operating room, she returned to ICU. Upon returning her temp was lower than we like, and she was "not with it". It was a 12 hour struggle to return to her normal temp(which isn't normal for anyone else). This is really hard work for the nurse and Kelly and I. Kelly was in a 95 degree room all night. She was so exhausted by morning. I hope that means she has slept well today. I know that I slept better last night knowing she was with Kelsey. It sometimes feel futile because she doesn't know you, but really she needs someone to just be with her, pray for her, and love her. Today she had an ultrasound of her gall bladder and both arms. She has something that looks like sludge in her gall bladder. Both arms have clots. They gave her some good conscious sedation when they put in her new central line. It indeed has 3 lumens. They left the old picc line in because she has so many meds, and it is still working for now. She is resting with more good drugs tonight. The first of the cytology is back from the lungs. It is looking like she has fungus in there. This is really heart heavy news. This grew on 3 fungul drugs. They continue to hope that she can hang on long enough to receive this new transplant. The granulocyte transfusions will continue. When I get this kind of news, I feel so defeated. I know how big our God is and this is the hope for which we put her life in. She is getting tired of the fight. She has said twice in the last 24 hours that she is ready to go home to Jesus. Then, she says she can hang on. Then she says "whatever God's purpose is, is what she is doing." Really that is what it is about. That is what we believe. The suffering she is going through is for God's purpose, and she is all about that. The good news is that she won't remember any of it, at least we don't think so. I feel encouraged by all of you and it makes the journey more bearable. Singing Praises to God every day.
Love,
Mom

Day 77

Kelsey coughed up blood until 11:30pm, then ENT came in to stop some of the bleeding. By 12:30 she was resting. About 4:00am she started with the coughing and bleeding again. Her SATS dropped in the 70's most likely after she aspirated some blood. Kelly called me at 6:00am telling me they were moving her to ICU. She is doing better on oxygen but still not sure why all this is happening. The procedures will hopefully give everyone a clearer picture of what is happening, and we can move on out of ICU. Pray for Kelly. She has had a tough job already. I know she felt bad calling me this morning at 6:00, but she is doing an awesome job. It is a really helpless feeling not being able to make everything go well. I am grateful that she is here, and I have a companion to share these hard times with. As per the course, she is perplexing everyone. She is really suffering right now with all this bleeding and coughing. She is extremely confused even though her temp is holding. She is now in the OR for the endoscopy, bronchoscopy, and ENT procedures. Pray for clarity, safety, and ANSWERS!

Day 76

Joanna made it home safely. Kelly made it here safely. Kelly had a quick course in what to do and was left with Kels overnight. It wasn't a bad night, however, she did need oxygen which Kelly caught easily. Yesterday and today she has done pretty well. The diarrhea and vomit are gone. The fever hits every day but doesn't remain all day long. She didn't even need Tylenol for it. She started eating yesterday, although it wasn't much. She has eaten today also. She took a walk outside her room, the second this week, which she gets big praises for. Tomorrow, she will go to ultrasound to figure out the status of her clots in both arms and locate a good place for her new triple lumen tunneled line. After that she will go to the operating room for her endoscopy and bronchoscopy. She won't be able to eat for the first half of the day, so there goes her calorie count again. Her gall bladder is touchy when pushed on. She will get a special scan for this on Friday, and the new line will be placed. Again, no eating for half the day. Once the new line is placed, one lumen will be dedicated to iv food(tpn), the others will be used for existing drugs and chemotherapy. At this time, nothing is in stone, and everything could change, however the plan is that she start chemo around Jan.30 with cell day being Feb. 4. She has been tolerating everything they give her and takes things in stride. She is a fighter and gets feisty at times. Her temp changes continue to be a huge issue and quite limiting in daily activities. I took a break from writing and now as I return she threw up with blood in it and she is coughing up blood. We are waiting for the doctor to come in and praying for strength to keep this fight up, to stay strong while waiting on God's timing, and just not worry about tomorrow. They will most likely be giving more platelets tonight since she is bleeding and more prior to her procedures. Hoping for more answers after the procedures. Pray for Kelly tonight. This could prove to be a restless night. I grabbed one of my devotionals and read about peace. "Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7. Then, "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
Love,
Mom

Day 72

My devotional was so perfect again. I am not surprised, rather in awe. It says that I am surrounded by a sea of problems, but that I am to be face to Face with my Father who is my peace. If I gaze too long at the myriad of problems which is what happens when I look too far down the road, I will sink under the weight, BUT if I focus on Jesus, I am safe. Circumstances around me are treacherous-looking waves in the distance. If I fix my eyes on my Father, by the time the waves reach me they will have shrunk to proportions of His design. The future is a phantom, seeking to spook me. Laugh at the future and stay close to Jesus! Just wanted to share this and that today is a good day. Kelsey surprised the neurologists yesterday with remembering the 3 words they ask her to remember each time. This was huge in their eyes and they can say, see it can be done which means there is hope in this area, of course, by medical standards. She was rather alert today, doing Kelsey type things. She has kept temp since the last drop on Thursday. The biggest thing today is the granulocyte transfusion which will be done in the ICU. It may occur around 5:00pm. I'll post on Facebook when it is happening. They want to see a fever meaning it is working. We don't want to see anything else that would cause distress. I am not sure if I mentioned that a good friend, Kelly, will be arriving Tuesday late afternoon for the Tuesday night shift since Joanna is leaving Tuesday morning. This will continue to be a huge blessing. The other night when Kelsey had low temp the aide in the room wanted to take her covers off of her because she was sweating. This would have been awful. Fortunately, Joanna was around to set her straight on what was really happening. This is exactly one of the worries when I am away and exactly why Kelsey needs her advocate around all the time. Also, Kelsey had told me that she always wants to see a familiar face when she wakes up. I get this. It is a proven fact that family and friends are critical in the recovery of very sick patients. When I told the social worker that another friend had stepped into this roll. She teared up. It is really unusual to see this much support, so Praise the Lord it is well seen. Still thanking God and Still in AWE!
Love,
Mom

Day 72

Here I sit pondering my time with Kelsey for this past week and a half. To say the least it has been good, hard, even funny at times. There is not much of a routine because you never know what is going to happen next.

My time is pretty much spent in monitoring her temp and giving Kelsey as much water as she desires. I try to be Kelsey's advocate especially when she gets a nurse or sitter who has not cared for her. When she is sleeping I pray almost constantly. Sometimes, our interactions remind me of when I babysat for her many, many years ago. The second night I was here I was so concerned about her temp that any time she moved her blanket off I would tuck her back in. She told me to stop fidgeting, and I said I would if she would keep her blanket on. That is how we rolled sometimes back in the days of homeschooling. :) Hopefully I am not a thorn in her side but rather a help and comfort to her. Sometimes I annoy her and other times I amuse her. Since I am on the night shift I try not to talk to her and try to give as peaceful of an environment as the nurses allow. Whenever I can give her comfort like rubbing her tummy or resting my cold hands on her head I do. She says it helps but makes her feel bad when I have to sit by her to give her these small comforts. I always answer her by saying I flew all the way here just so I could do this very thing for her. Then she gives me her sweet smile which makes my heart more glad then you can know.

The other night I witnessed Kelsey's low temp state. She was out of it but at one point I asked her if she knew the song Jesus Loves Me and if she wanted to sing it with me. She did. She sang it word for word and what a lovely voice she has. In all my years of knowing her I didn't know how well she could sing. Well, she went to sleep after a bit and her temp came up to a better range. The Lord is faithful and brought her through this time.

On a lighter note, we have had a few laughs. Tammy said I should share this next story so if Kelsey ever reads this and gets mad at me I can refer her to her mother. That's my disclaimer. :) So she got up to go to the ca-mode and did her thing. She then had some gas and said she wasn't expecting that. She said, “Well there you have it folks, the grand finale!” Her humor is wonderful, and it was so was funny at the time, but I am no kind of writer to spell it out for you in a better way.

The Lord can use us all in many ways and I am so honored and blessed that he would use me for this time. Hopefully Tammy was able to have more peaceful rest so that she will not be weary for the road ahead. My night time vigils are coming to an end and the scripture that comes to me for this time, for Tammy, for Kelsey is this:

Matthew 11:28-30

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

God is good beyond measure! I hope you all have a blessed day.

Joanna

Day 71

Today was definitely a better day. My devotional spoke about listening for my Father's voice and heed not the voice of the stranger. Although our doctors are not strangers, they are the voices that I hear everyday telling me this or that news. I do listen because they have proven over and over again how they care for Kelsey and her future. I received many words of wisdom to help me know that it is ok for me to live only in my day. I cannot look to the future or anticipate it. It is really pretty painful looking at all the what ifs that may come. We cannot know her future. We can only know that God has a plan for her. I am back today with only today. Their are many plans looming ahead of us right now, but again it is only a plan, and it may not even come to pass, so we will wait for that to come. The current plans hold granulocyte transfusions for the weeks leading up to the transplant. The nasty brain virus drug has been started to kick that virus as far down as possible before the transplant. There is no more hope for the cord cell transplant to work that is why this drug has been started. Now they are tuning her up with all they can before the next transplant. It looks like it is a go. The donor has reported for the first blood collection to check for virus's and such. Then all the paperwork and scheduling to harvest the bone marrow will need to happen, and Kelsey's new chemo regime needs to be completed. The donor has agreed to go for the bone marrow, and she needs to make it to that point. She won't have to wait for the cells to mature. She will have an increased risk of GVHD. These are the happenings, so please pray how the Spirit leads. She goes to ICU tomorrow afternoon to receive her first granulocyte transfusion. Pray for only the little reaction that they want...just the fever.
Love,
Mom

Day 70

Today is 10 weeks after she got her cord cells. Wow, more not good news today. So we already know that this fungus in the sinus is bad, well it is very bad. The Granulocyte transfusion is only a temporary help. It won't get better until she has an immune system, namely lymphocytes. She is still not producing anything, nor does it look like she will. The results from the LP came back showing the virus is getting worse, but not significantly. Since the 2nd med was stopped 3 weeks ago, the fact that it has only progressed this much means the first drug is holding it at bay. Same situation, it won't go away until she has an immune system. What is happening now is that the adult match they would like to get is being contacted, then if it's a go, then current testing will occur, 5 days of the prep, then collection, then Kelsey will get 4 days of wipeout chemo, then the cells. If it is fact going to be 2 weeks until she gets cells, then she will get more of the 2nd med to continue to treat the brain virus and the granulocyte transfusions. It was a tough day of news. News that wasn't shocking, but news that puts a frown on my face. Do I just keep hoping each day that this is the day she will be healed, or do I just not expect anything to keep from feeling down? I think that sometimes living in just that day is not having any expectations at all. Just live that day to His glory. Thinking ahead to healed or not healed is just too far ahead right now. Any thoughts? Anyway, it has been a tough day for me, for her, her temp has been down to 35, and it has been awhile since it was that low, actually Jan. 2. When this happens she loses all things normal. She is extremely confused. I have a few more things to do for her, then I'm off to rest. Thank you for praying and standing with us during this huge bump in time.
Love,
Mom

Day 69

Some of you have inquired about how to get tested to see if you could be the match for Kelsey. You could specifically go through a private company to do this, but it is a bit pricey say around $150-200?, I'm not sure. You can always join the Be The Match registry online by going to join now. They will send you a swab kit. But, just so you know, it is not timely for you to be her match because it takes about 1 month for you to hit the list. However, you still could be a match for someone, so I would encourage you to do it.

Kelsey's fungal infection in the sinus tissue is pretty serious, especially so close to the brain. She is currently on 3 fungal drugs. She will be getting a granulocyte transfusion 2-3 times a week for 2-3 weeks. A granulocyte donor has to already be in an existing protocol that allows for this type of collection. Since I am in a protocol, they are checking to see if I can donate. It is risky in that the donor hasn't been tested just prior to donating. The donor will be tested, but results come after the host receives the cells. They are tested every month because it is a requirement and although the risk it reduced, it is a risk that we have been made aware of. Things could have happened or the donor could have been exposed to something within that 30 days, then she could get that. We always have a choice, but it is reasonable to think that this is needed if it has been so thought out that it has been presented to us. I know that this is one of those risk vs. benefit procedures. The benefits far out weigh the risk. Such great minds continue to think of everything they can to get her better. For me, everyday is on edge. Outwardly I am remaining calm, but internally I struggle with all that is looming ahead. I get impatient. I get tired of the fight at times, not that anything I do in the bigger realm of this will help, but all that I can do in the realm of that day I do. I get set over the edge emotionally at times when things don't go as well planned as they should especially that hurt her(like temp issues). I want her to be comfortable and secure. For the most part, everything is going pretty well. I weep at little things like a good poem or scripture or story that relates to our current situation. Not really because I'm sad, but mostly because I'm overwhelmed with love and how Great our God is and how great God is for using this story for His glory. When I received a bunch of this not-so-good news on Monday, I was saddened again. Then, I received 3 messages from Facebook that made my day. I know that my "longsuffering" as it was put is so worth it. I had never thought of it as that, but that is a great description. To those of you that share with me these messages, the timing has been perfection. I have to say that this is exactly the love of God through people that ministers to me and makes this longsuffering so worth it. It is this love that makes me weep. It is this love that keeps my focus on the day and gives me more hope. God is so big and continues to awe me.
I was feeding Kelsey some peaches a bit ago when she looked at me and told me that God is teaching me patience. Don't I already know this! This is far more of a challenge that sitting with Karly for 5 months. With her, it always was serious, but each month we had a schedule, then a time when it was suppose to end with a future plan with extremely confident doctors. With Kelsey, it is literally a daily change of events, with an ever-changing plan, with no end to this, with doctors who are confidently working on it with great hopes after sitting on death's door with a God who gave us a miracle to be where we are right now. Praising God all the time for just being here. Praising God for the miracles we've seen. Praising God for all of you. Thanking God for every day. Kelsey is amazingly strong that she keeps fighting every day. She can still smile the cutest smile. She is Kelsey! As she would say, "God is good all the time."
Love,
Mom

Day 68

The hunt for an adult donor is back underway. The problem is that we still have not found a good match for Kelsey. As research continues the human leukocyte antigen matching has gotten better. There are specific HLA's that we all have, the closer we can match Kelsey's HLA's with a donor's HLA's the less graft vs. host disease which can be deadly.
An ideal antigen match, known as a "clinical match," means that both sets of the "most important" inherited human leukocyte antigens in the donor match perfectly with those on the body (and immune) cells in the patient. The host needs enough matched antigens so the current immune systems doesn't attack it. The immune system of the patient, who is called a host, senses that these antigens are "unmatched" or "non-self." This prompts the patient's immune cells to attack the donated (transplanted) cells, which are called a graft, and this assault can lead to the patient's rejection of the transplant ("host vs. graft").

More often, though, some mature donor immune cells that are mixed in among the transplanted blood stem cells recognize the antigens on the patient's body cells (host) as "non-self." This causes the transplant to attack the patient's tissues and organs. The result is "graft vs. host" disease, which can be very serious.

Today was a stressful day in terms of being out of her toasty room and warmer at two appointments back to back. She had CT's of head, chest, abdomen, then the LP after 9 units of platelets since last night. Both went well. By the time we got her back to her room, her temp had dropped but came back quickly. She also had follow-up from the sinus surgery where about 80% of the clots and packing were removed and sucked up. This will continue on Thursday until he can see the sinus floor again. She did very well and slept a lot after all of that. I was in the LP with Kelsey so didn't get to say good-bye to Carmel and Karly. I missed that, but was relieved that their flight happened and they returned safely back to Indiana. Karly's appts. went well. She had another good cancer check-up...Praise God! It was so good to see her and have Carmel here to help with that. I had to travel back and forth between the two rooms when doctors showed up. Carmel traded with me, and it all worked out. She most likely will return in 3 weeks because she gets too tired if we wait 4 weeks. Joanna is doing so great and what a huge blessing she is to have here. It really makes a difference in my sleep and state of mind. Kelsey actually thinks she has a nursing degree. I have no idea what God will provide in a week. In fact, I was telling Joanna tonight that at the very least she is certainly prepping the night shift as to what Kelsey needs at night. I pray, "And my God will meet all my needs according to his glorious riches in Christ Jesus".

Love,

Mom

Day 67

Things are so complicated with Kelsey. As it turns out the fungus found growing in her sinus is invasive, but just don't know how invasive. The other fungal drug was added so now we're waiting to see the response. Because it is invasive it is extremely dangerous in this extreme neutropenic state. It sounds like she will be getting a granulocyte transfusion. I don't know how complicated this really is, but know a good match is needed. Because of her added resistant bacteria an antibiotic was started last week which may or may not have caused the little white blood cell number we saw to lower. This drug is being changed with hopes that we may see that number increase. With her seemingly more confused state, an LP needs to be done to really determine if this is truly a worsening of the brain virus or just a side effect of the many drugs she's on. The hunt for another donor is under way. So far an unrelated donor is available, but doesn't match as much as they would like. This may be our only choice soon which causes great concern. The plus is that she could get an immune system within a couple of weeks, but then the risk for GVHD is increased. Then we are back to balancing every drug to match the greatest benefit vs. risk. Her case is truly very complicated with great minds working overtime on trying to make the best plan. These are the facts of what we are dealing with, but God is the great healer. This is one of those times when you know that He could instantly heal her, but then know that if He doesn't then Kelsey's story is really going to be a good one. All for His Glory!
Love,
Mom

Day 66

Today's devotional hit the mark with mostly how I'm feeling at this point. First there are many obstacles, so don't be discouraged...never give up. Do not expect the path to be easy. I want this immune system for it seems it would solve so many of Kelsey's issues, but I struggle with knowing that God could and would make this possible, so I have to be patient because His timing of events is sovereign. It is a struggle to keep wanting this and then waiting. The longer we wait, the more we struggle. While I see delay, He sees His will being performed in ways that are not discernible to my eye. What I see as standing still, He sees unfolding. My job is to REST in HIM. He is surely bringing to pass His perfect will in and through this entire situation, and it is doing a unique work in many different lives, as they are touched and affected by the action. I know our God is mighty, and His hand is working a victory!

Love,
Mom

Day 65

After an impromptu MRI, ENT was called to look at her worsening sinuses. Good news at this point was brain looked same, at least not worse. ENT determined that she had some fungal growth which needed immediate action because she is extremely neutropenic and already on a fungal drug. During surgery, they removed the fungus, some polyps, and cleaned things up. The surgeon determined that the fungus was not invasive. They added another fungal drug for coverage. This was good news. She recovered in ICU last night and most of today. We are now back in 1NW. She remains in pain and stomach is upset. She hasn't eaten today or yesterday. Tomorrow she needs to eat. Joanna is doing such an awesome job with Kelsey, so full of patience and understands the issues she needs to control. I know I feel comfortable;I know Kelsey does too. She wouldn't let me leave if I didn't have someone she knows with her. She gave me the pouty lip tonight when I said I was going to leave so compromised that I would stay until her last pill was taken. She has had to stay under the warmer for much longer periods of the day. I hope and pray that this period of time shortens. I am excited about Karly and Carmel arriving tomorrow night. This will be a different routine, but it will all work out well. Pray for safe travels. Pray for stability. Above all else she really needs the immune system to deal with all these infections...bacterial, fungal, and viral. Sorry for the abrupt ending...but time to go sleep.
Love,
Mom

Day 64

Joanna held vigil last night. Thank you God. Having new nurses dealing with Kelsey is hard enough, but then add all her weird symptoms that require immediate attention and that makes for a real vigil. This morning an unscheduled trip to ultrasound her kidney had Joanna on her toes to keep her bundled to stay on top of that trip. All in all the day is going well. Love being back on 1NW. Her address is:
NIH
9000 Rockville Pike
Bldg.10/ CRC Room 1NW1648
c/o Kelsey Koch
Bethesda, MD 20892
There have been some subtle mental changes(worse) that have us concerned that the brain virus may be worsening since off the Ganciclovir although not enough to say put her back on it. The next few days will give us some signs, another LP and another MRI will give quantitative data. After gathering some data a decision will be made. What we hope for in the meantime is that the immune system makes a huge jump that can be visibly seen in the lab. Once she has this immune system, it can fight the brain and other viruses without any more harmful drugs. This will put some big smiles on people faces around here.

Words of Wisdom passed on from Joanna's husband Jason,
Colossians 2:1-5 (The Message)
¹ I want you to realize that I continue to work as hard as I know how for you, and also for the Christians over at Laodicea. Not many of you have met me face-to-face, but that doesn't make any difference. Know that I'm on your side, right alongside you. You're not in this alone. ^2-4I want you woven into a tapestry of love, in touch with everything there is to know of God. Then you will have minds confident and at rest, focused on Christ, God's great mystery. All the richest treasures of wisdom and knowledge are embedded in that mystery and nowhere else. And we've been shown the mystery! I'm telling you this because I don't want anyone leading you off on some wild-goose chase, after other so-called mysteries, or "the Secret."
⁵I'm a long way off, true, and you may never lay eyes on me, but believe me, I'm on your side, right beside you. I am delighted to hear of the careful and orderly ways you conduct your affairs, and impressed with the solid substance of your faith in Christ

isn't it amazing how in the grand scope of Christianity that we can become woven together with such a great love for those whom we have never seen. It takes work, it takes time but if we allow ourselves to not just pray but learn about those for whom we pray and truly lift their burdens to the Lord we begin to feel by their side. I remember feeling this as I prayed for the miners trapped in Chile and I find it also when I pray for any of those whom you may request me to pray for. I take great joy in this as well as I know that you do too for we have been woven in the grand tapestry of God.

Thanks Jason. I really appreciated this insight.

Love,
Mom

Hello again,

Yesterday, one of my dear Monroe Central prayer warriors came in my room and was trying to explain the magnitude of the battle she percieved we were in. She was telling me of her sense of the enemy's strong resistance and how we were to keep up our vigilance and maintain our prayer effort. This was a word that cut timely and deep for both Tammy and myself. We see the stagnation of not having an immune system and how this one thing continues to hold up the progress we want. But yet Kelsey has moved out of ICU and things seem like they are going the right direction. But I believe this word is a battle cry much like McClellan at Antietam. Sensing Lee's weakness but licking his own wounds, he refused to attack that final time and Lee slipped away to fight another day. So I am encouraging you all to continue in this "fight"! We have seen so much positive but I believe, and Sarah confirms, that the battle still rages. We could easily let down and the Lord would not be glorified in this. Thanks so much for the persistant efforts I have heard of and the blessing we have recieved.

One final thought comes to mind here. It must have been rather disheartening to Moses when after the Lord had delivered them in Exodus ch.13, then in ch 14, God told them to "turn back and encamp" which then would allow Pharaoh to harden his heart and pursue them. We must let God be God and follow His plan with obedience. It would be easy to leave God out of this equation once there seems to be some relief from the storm.

Thanks again for all that you are doing and continueing to do.

Dad

Day 63

After 38 days in the ICU, we have arrived back in a new room on 1NW which is across from the nurse's station. She had a busy day in which she dropped her temp until about 9:45pm. Let's see, I was Alex, Katelyn, and her sister today. These are not great times when she goes so far away from reality. I literally have to stay right next to her to keep the warmer completely over her. She gets fidgety and so unaware. I try to be patient and explain the same things over and over again about why this needs to happen and what her job is to stay still under the warmer. It is so comforting when she returns. She has an aid staying in her room with Joanna tonight, but Joanna is the one that knows what to look for after spending 2 nights with her already. She is also the one that Kelsey will listen to and the one that can comfort her. I am hoping and praying for a peaceful first night back on this floor. We are acclimating. I believe everyone at home is acclimating as well. She's had another resistant bug crop up which is a hitch, but being treated. Doctors still don't know how long to wait on her immune system to re-present. This is the best option. I don't relish the thought of Kelsey's body handling more chemo, etc in order to take on more cord cells. This presents so many tricky issues, it is best not to think about. Best is always God's plan. That is what we want to happen. Being patient is the best option. Pray for patience and wisdom. I just don't know what else to say. Come Lord, More Lord!
Love,
Mom

Day 62

Joanna arrived safely. Have you ever heard me mention how perfect God's timing is? Kelsey had an awesome night nurse again Monday night which allowed me to rest fairly well. I was waiting to see which night nurse she was going to have Tuesday night. It turned out to be a nurse we have never seen before. I cannot express how grateful I was that Joanna was going to be with her last night. She had a quick lesson in what to watch for throughout the night which is not so easily learned. I think that watching Kelsey in pain with these spasms left her mother's heart wanting to see her out of pain. She did find herself asking for pain medication for her a lot. Kelsey did sleep between spells of pain. Joanna was there to help monitor her temp, hold her hand, get her sips of water when needed, and whatever else Kels needed. I was able to rest. Instead of dreaming about Kelsey, I dreamed about Karly. I will have to call her today to see how she is doing. Karly and Carmel will be traveling Sunday to return here for her cancer scans and antibody refueling. I am looking forward to their arrival. The following is from Joanna's husband. Please remember their sacrifice in meeting our need.

My Dear family here and across the states,

Tonight begins my time without my wife. For two weeks she will be in Washing D.C. taking care of her friend Kelsey. If your interested in reading more about Kelsey and seeing how she is doing and how you can be praying please follow her on this link http://kjkdancingthroughtherain.blogspot.com/ . If you take this challenge to pray here I want you to know that you won't be left unchanged by the witness that this girl is bringing to all those around her. Scripture tells us that we become more like Christ in our sufferings and that we should count it all joy. I know that Kelsey does count this all joy. That doesn't mean it feels good it doesn't mean that tomorrow she will be better, it only means that she has found her peace in becoming like Christ. I pray for her healing and know that she is being taken care of. I hear of her testimony she gives in her lucid moments and can't help but be left in awe at her courage. May I be able to stand as she has in this horrible pain and long-suffering. Please pray for my wife. She has such a sweet heart. I really do love her so and I know that these two weeks will be grueling for her. But I also know how strong she is. For every bit of tender heartedness she has she also has the strength of the Spirit to do far more than anyone could ever imagine. Pray for them hard my brothers and sisters and thank you for all you do. You don't know how much I really enjoy getting to serve with you all and be a part of such a grand body of Christ. Praise God!

in service to Him,
jason

There has been talk about moving Kelsey back to her 1NW room. I feel as though they could handle it especially now. I believe I will be more at ease in our familiar territory, I hope so anyway. God has our perfect plan and timing, so that is what I trust in. Transformation is a good word to describe what we are going through spiritually and physically(for Kelsey). My prayer is, "Holy Spirit, think through me, live through me, love through me." Romans 12:2 is one of our family's life verses: "Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is....His good, pleasing, and perfect will." Another verse we live by is Romans 8: 26-27, "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts know the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will." I absolutely trust that God, himself is perfecting our path; He is interceding through all the saints; He sends what we need when we need it. I still maintain that I do not know what I need while going through this. I like not knowing. I like knowing that it is being provided. I like that when it is provided, it is of God. Then the story is more powerful and gives God all the glory. I like weeping from the joy and love we receive. My heart remains thankful and grateful.
Love,
Mom

Day 60

Thankful for a good night nurse last night. Had a great day nurse today and another awesome nurse tonight. Praise God. I will get some rest tonight. She had an awesome day today. She ate some good calories today. Worked on the re-timing of some medications which may allow her up more throughout the day without the constant peeing. One of the major medications is detrimental to the kidney so pre and post hydration is heavy for flushing. If this med can be given when she is already in bed it would work out better for her temp and her productivity out of bed. This will take awhile to get it moved, but it is a step in the right direction. Pray for sleep for both of us tonight. Kelsey didn't sleep at all last night which is usual when her temp is low. She needs a great night tonight. We are in a waiting stage for the immune cells to show up and mature. They saw 1 neutrophil the other day. This should mean there are others. Nothing much will change without the immune system. We really need this to happen soon. To be this extremely neutropenic is dangerous and concerning. Joanna will be arriving tomorrow afternoon. This will be a huge blessing. Pray for her family while she is away...God's provision and blessing for her and her family. Pray she adjusts well to this environment. Pray for safety as she travels. Pray for the Holy Spirit's leading. Thank you warriors. Good night.
Love,
Mom

Day 59

My days have been so occupied with caring for her, I barely have had time to eat. She has to get up and pee every 5 minutes. I don't let her though, so have to talk her out of it for the next 10 minutes. Then, I let her up after 15 minutes, then start all over again. This is how Saturday went for 12 hours. Today, she only lasted out of bed about 5 hours before her temp dropped. Now, I am struggling with the bed pan, keeping a confused Kelsey from trying to get up, or uncover herself. What a handful she is. We have a good nurse tonight. I pray that I can sleep and not worry about what state she will be in by morning. Time to head off to bed because the nurse has pulled her computer into her room for the night vigil. Keep praying warriors.