Thursday, August 28, 2014

Day 34

Results are back from biopsy; nothing much to report which is good news. Her abdominal pain is better. I really think it was related to one of the drugs she had to take for a month. Her last dose was Sunday night, and the pain has been okay for 2 days. She has lost 15 lbs, so beefing her up is on the agenda. If all continues to go well overnight, her PICC line will be pulled tomorrow. She still has her trusty port, well she has 2 ports, but the one in her head is only for tapping and chemotherapy. Let's just leave that one alone. She will be able to go on "pass" over the long weekend returning as inpatient on Monday evening. The virus is still at low positive.. better news would be negative next week. They still have some things to "make sure of" before they discharge her. But, again, if all goes well, that could be on Wednesday. Sometimes we get ahead of ourselves, so still just one day at a time.

We were blessed with our loaner car this week...big shout-out to Valerie and Jim. God Bless You!
We got to see a DOCK8 bone marrow transplant patient(friend) and mom today. It was fun for the girls to talk. I enjoyed getting answers to many questions I've had.

Fam leaves tonight or more accurately tomorrow morning. Pray for safety. Tyler is driving from Chicago to Muncie right now. Dad is getting home from 2 soccer games and still needs to get some sleep. We are very excited. We hope to spend some quality time at Aunt Debbie and Uncle Ridge's house this weekend. Karly has been requesting different foods...chicken legs and thighs, silver queen sweet corn, oven-fried red potatoes, big juicy pork chops, mashed potatoes and gravy, stir-fried veggies, and some delicious fruit cobbler. Of course, we must have some seafood! That's our challenge for the weekend, to start the beefing-up process. Hope you are reading this Aunt Debbie!

May you all find God in everything you do.

Tuesday, August 26, 2014

Day 32

Yesterday was okay. She wanted to go back to the Inn where it was more peaceful and restful. Hoping we will be outpatient soon. Her abdominal pain seems to be worse. It is hard to say exactly. She has been experiencing it for weeks, but when she was on the Dilaudid 24/7, it likely masked some things. Plus she wasn't eating as much, plus she wasn't taking everything by mouth. All these things can muck up sorting it out. This is when they put their heads together and start figuring out the best way to proceed. She was supposed to start Neurotin last night, but the pill is huge meaning she cannot swallow it. We will speak to the Pain Team again today for better pain control. She had 2 things elevated as of yesterday, her amylase and lipase. These are pancreatic enzymes. They will look for a drug reason although we haven't started anything new...just all by mouth. Help Tim J(you know who you are)! If you think of anything let Dr. Freeman know. They may get an Endoscopy this week. We are waiting on the final word. Although this is something we don't like to do, it is better knowing what it is so it can be better so she doesn't stop eating and drinking from the pain. It seems like it always something. Nothing is easy. Pray for wisdom and against unnecessary procedures. Keep praying for these things. The HHV6 is still low positive, so pray it will go negative by next Monday.

The following FB video brought a smile and a tear to my face. Thank you Jessica. We were blessed.

Only 3 more days until we see the fam. We are very excited about this. Oh, I so hope that she will feel well enough to really enjoy this time. Please pray for safety for all the traveling and all those things mentioned above.

Thanks everybody!

Sunday, August 24, 2014

Day 30

Karly was able to spend the weekend on pass to the Children's Inn. We planned on going to Annapolis to experience Maryland Blue Crab on Saturday, but she didn't feel well enough. However, the rest of the weekend has been good. She continues to be anemic, so activity is limited. Eating and sleeping has been better. She takes so many medications that upset her stomach. Headaches, anemia, GI discomfort, and mild GVHD are all things that keep her not feeling well. Still watching for viruses and infections.We had to move from our room to the one next door. We shouldn't be at the Inn much longer. I am actually looking forward to moving to the Woodmont House. It will be new to us, but I think the location will be good for her recovery. If all continues to go well, she should be outpatient by the end of this week. Zach and I make a good caregiver team. He is so awesome taking care of her...what a gem. I'm glad that he has been able to take this journey with her. I will never be able to express how grateful I am that you all stand in prayer for us nor how faithful our God is to us.

Wednesday, August 20, 2014

Day 26

I'm still excited to be able to report that things are going well. Karly is asked everyday, "How's it going?" She reports the way it really is with how crummy she feels, yet she has better days than some. I have to say she is doing well for a transplant. Her HHV6 report is still low positive, but it is the lowest number to date. They will not repeat another Ommaya tap this week..and hopefully not next week either...maybe not at all if we don't see any changes. That's good, because it is pretty sore to touch. She is still continuing to build up neutrophils and platelets. The one thing she doesn't have are T-Lymphocytes, because these are the ones we zapped with post-transplant Cytoxin to help control GVHD. They are the ones responsible for fighting the HHV6, CMV, and EBV. These are the main viruses we pray against. At this point she has been only positive for the HHV6. We are remaining encouraged by her progress and hopeful for her future. I am focusing only on what we live each day and thankful at the end of the day. Her room is a reminder of how much you all love her, and great our Father's love is for her.

We were privileged to meet another DOCK8 family today from California. It is fun for me to meet our DOCK8 family, so we can encourage and share with each other. DOCK8 varies a lot, but we know that to transplant younger is better and that this disease does progress. Pray for these families to sense when the time is right in their lives to make this tough decision.

Karly had art therapy today. I love that she can enjoy these projects from time to time. It takes her mind away from how she is feeling. I painted her toenails Seafoam thanks to the Gilleys. She was feeling homesick yesterday. We do our best around here, but there is no replacement for the joy we find in being all together being goofy and laughing. We are looking forward to the clan arriving in 9 days. There is talk that she will be able to stay at the Inn this weekend as a test run for going outpatient. Hoping that it happens, and it goes well. It should be quite restful for her not having all the interruptions all day and all night. Poor Zach, this schedule will be challenging since he does the night shift and this weekend will be day, then back to night. He's young and will roll with it. You all could pray for Zach as he has made the decision to take this semester off from college. I think it is a wise decision. Pray the school is accepting and goes beyond measure to help him return with no repercussions. HE is helping Karly immensely. Neither of them say they could do this without the other. I am very thankful for his help, and I certainly sleep much easier knowing he is with her.

God is in control! We claim this everyday. He knows the plan He has for her. Thank you Jesus!

Tuesday, August 19, 2014

Day 25

Sunday turned out to be a pretty good day and to top it off, Aunt Debbie brought fresh steamed shrimp dipped in garlic margarine. Karly enjoyed that immensely. Karly and Deana ditched Deb and me on our walk exploring campus. Karly couldn't stay very stealth with her noisy "Reggie" wheeling around.

Monday was another not so good day...more of the gurgling stomach, feeling nauseous, and headache. They removed the PCA(patient controlled pain medication) to IV push as needed. She went for her MRA, but was light-headed and too nauseous to get into the machine. It wasn't that important to do right now. Actually, I was relieved to have it postponed. I had felt that the timing wasn't right for her. I thank God for not having to do it yesterday even at the expense of her feeling bad. Her tap went well, but we won't have those results until later today or tomorrow. She felt better in the evening regaining her ability to eat, and she slept pretty well last night.

I think one of the medications they moved to oral was causing her stomach issues. It was moved back to IV, so we will see how this goes. There are still many others that could also be causing this, so we will continue to watch and change as needed. Her TPN will be removed I think today and moving her to oral Tacrolimus. This means she will no longer be attached to "Reggie". This is a great milestone. Pray she will be able to maintain good levels of all her medications and labs throughout this process. Pray that her cultures yesterday remain negative. Pray the HHV6 and all other viral infections are negative.

She is doing great. She is so strong and courageous. We thank Jesus for His faithfulness, His unfailing love, His trustworthiness. We thank Jesus for you, your encouraging words, cards, and prayers.


Sunday, August 17, 2014

Day 23

Yesterday was a quiet day as is today. She didn't feel well most of the day yesterday. Stomach gurgling, diarrhea, headache, and nausea. Sleep was her friend. We did get outside for a long walk. That tired her out, but was great for us both. She feels better today, and my sister Debbie and niece Deana will be arriving soon. I find myself wishing for her to BE better without the ups and downs. I have to remind myself, yet again, to yield to God's plan. I was reminded today in the devotional to not waste my time and energy wishing for a different set of circumstances. My trust and hope in Jesus is enough. Pray that the Ommaya tap tomorrow night will yield a negative result and that all other viral, fungal, and bacterial infections will stay gone, and that the GVHD will also not play a negative role in her recovery. To God Alone Be the Glory!

Friday, August 15, 2014

Day 21

Karly is doing very well. They are gradually moving her off IV forms of the medications to liquid or pill form if small enough for her esophagus to handle. The Tacrolimus will be the last one to move over. It runs 24/7, so once this one is removed from IV, she will be untethered from "Reggie". Today she has a liver ultrasound and MRI of her Brain. Her liver counts are getting better. The HHV6 still came back positive with a slightly higher number, but for all such purposes those numbers could be the same. It does tell us the virus is there and low in number. They are being cautious so will continue to tap her Ommaya port on Mondays and Thursdays until it doesn't seem to be an issue. The tapping causes Karly anxiety, pain, and nausea. The sooner this can stop the better. Please pray for these issues. I guess the hand wringing will continue, but continue to pray that the results come back NEGATIVE next week. She will also be getting a MRA of her arteries to see if in fact these issues will reverse after the transplant. We are expecting they should reverse. The ECHO of her heart will also be next week, so hoping to see a better working heart and get off some of those medications. All in all, her reports are good and where she should be on Day 21. Continue to pray for those bumps in the road to flatten and our path will be straight.
We are the Lord's and He is our strength!

Wednesday, August 13, 2014

Day 19

The word today is that it did come up positive, but they currently don't know if that is 1 or many. They will be tapping the Ommaya again tonight at 5:00 with all our hopes being it will come up negative next time. They will be stopping the nasty medicine because it is messing with the graph and because her liver numbers are even higher today. They think the liver number is from the nasty medicine because of the correlation, but it could also be GVHD so hoping it is not the latter. This will pan out after stopping the medicine. The biopsy probably is leaning toward the GVHD of the skin, so will treat it with a steroid cream and see what happens. Good news is that she is still doing well. She had a horrible sleeping night, so I hope she gets some rest today while still eating enough calories before the tap tonight. Thanks for all your prayers! Please stay on your knees as we still have a long way to go with many bumps looming before us. Pray God lights our path and keeps is straight. Proverbs 3:6, "in all your ways submit to him, and he will make your paths straight."
Psalm 119:105, "Your word is a lamp for my feet, a light on my path."


Tuesday, August 12, 2014

Day 18 pm

We should hear the news tomorrow about whether the virus is in the CSF.  Please pray fervently that this would be negative. Her liver counts were higher today, so they called in a specialist. How great if this would be normal tomorrow also. The biopsy wasn't in today either, so probably tomorrow. We will face tomorrow trusting God.

Day 18 am

Still waiting on news from biopsy, although they say it might not be conclusive. Conclusive would be awesome. Her headache has increased, taking away the Tylenol because of liver and no Ibuprofen because of kidney/ She is allowed oxycodone but it doesn't work on her headaches. We are trying to get her off the dilaudid for a number of reasons, but they would allow it.

She remained nauseous with increased headache from the Ommaya tap all night. This should subside. Hopefully will have a day filled with calories.

Hot off the presses! Dr came in just now to report that she is 99% donor with 93% lymphocytes which are low in number but will continue to grow. Good news!

This put a huge smile on our faces. We needed some good news today after yesterday. To God Be the Glory!


Monday, August 11, 2014

Day 17 pm

Things can change quickly. This afternoon her rash was worse, and just as I was noticing it, in walks the doctor I needed, her transplant dermatologist. It has been biopsied. I noticed on her labs this morning that a virus we watch for has appeared in the labs. It is the dreaded HHV6 which in Kelsey manifested as the brain virus. At this point, we cannot be worried. It is often seen after transplants. What to do about it is the problem. Because we don't have a context for this in a DOCK8 haplo, we look at what has happened in other transplants. In one other DOCK8(besides Kelsey) it showed up. They started the big guns viral medication until they could say that it wasn't in the CSF. This is exactly what we are doing. They tapped her Ommaya Port(the one in her head) to pull out the CSF. We are praying for a great big zero virus found. We should know this in 2 days. The down side to this drug is that it will lower her counts. Pray that her counts remain strong and grow in number rather than diminish. We need her Lymphocytes to increase at just the perfect speed...too slow not enough to fight HHV6 and too fast an increase in GVHD. God knows.

At first, I couldn't believe what I was seeing. I remained calm, but had a nervous feeling. I emailed our Dr and asked what I needed to. It took her awhile to get back to me, because the team had to discuss the best possible way to proceed. Karly already had an emotionally taxing afternoon, so I didn't tell her. Of course what was difficult was to take Kelsey out of the equation for them and me. When she came in to see me, they had a plan. I had to let them know that they shouldn't proceed with anything because of my concerns, but rather based on the knowledge we currently know and what we still need to know. The Dr told Karly. Karly and I prayed about everything, and all we can do is keep trusting God. "Pray about everything; Worry about nothing." Phillipians 4:6.

Since the tapping of her Ommaya, she has been nauseous and that is with 2 nausea drugs on board. She ate a bowl of soup and threw it all up. We'll see if her medications stay done. Pray they will. We don't want this to set us back. Things have been going so awesome...let's keep it up!


Day 17 am

The weekend was peaceful and quiet. Her ANC is at 5000. Things are still "textbook". They are removing her constant dose of Dilaudid and keeping her on a push from her PCA. She will let them know how this goes. They are starting to add back some medication by mouth rather than IV. These are the things that must happen in order to go outpatient. Looking at about 2 weeks still inpatient. Potential issues would be too much in her stomach that would cause nausea which in turns keeps her from eating foods. Pray that she will continue eat and drink calories and start getting her nutrition from actual food rather than a bag. Getting her off TPN and the PCA would be a great stride this week. It is well with my soul.

Saturday, August 9, 2014

Day 15

Her ANC is over 3000 today...meaning last night of the shot..meaning all the bruises on her arms can start to heal. Since this is an artificial boost, they expect it to drop down, but not so much to cause any problems. The mucositis continues to get better. She is still on a large dose of Dilaudid through a PCA, but they expect this to improve over the next week. She is starting to drink again and eat a little like jello. She says, "Today I am so thankful for how on course this transplant has been. Through all the prayers I have been blessed by, everyday of this has gone just as planned. In fact, I think things are going better than I ever expected. I am happy to report that things are starting to feel a bit better, pain hasn't been too tough, and white blood cell numbers are continuing to improve. Praising God for everyday!"Continue to pray for No BUMPS in the road ahead. She is only Day 15, so maybe another 2 weeks inpatient, then another 60-70 days outpatient, hoping for shorter but patient for whatever.

Grateful for peaceful days like today. Pray for peaceful nights and restful sleep. I have conversations that bring up Kelsey's transplant fairly often. Sometimes, it leads to trying to find an understanding or mastery to what happened...all the mysteries that have been unexplained. Of course, this is a battle in my mind. And gratefully, always ends up with the same realization: God has instructed us to trust Him and not in our understanding. I love to figure things out and solve problems, so it is something I must be careful with as that could be a focus that consumes me. Thankfully, God has taught me so much about this, and I am free of the consuming nature of it. I am so grateful for God's grace and mercy..for His loving character and faithfulness to us. May you find this in the storms of your life.

We are dancing through the rain.

Friday, August 8, 2014

Day 14

Her AbsoluteNeutrophilCount is just over 1000. We need three days of this to quit the nightly shots. Pray her platelets hold and she starts making her own because the allergic reaction to these is yucky: swelling and severe burning itching rash over all her body and that is with premedication. She has been a little nauseous over the last 2 days. She wants to eat, but cannot handle anything other than liquids. Everything is going as planned...I said like textbook....then docs were oh wait...we are writing the textbook.

Visitors today...Aunt Debbie, Deana and Hannah. She went to the playroom to retrieve some supplies to make jewelry. Uneventful is good news around here especially going into the weekend. Praise God from whom all Blessings flow!


Thursday, August 7, 2014

Day 13

She is starting to get better from the mucositis...pain level down to a 6 now. She can take in some water and attempting some food. She looks good and keeps pushing herself. She takes walks and manages some dance moves and stretches. We played Bingo last night...yah, we go for the fabulous prizes: Snakes and Ladders, Princesses Flashlight/Pen, and photo book.
Look who's still dancing through the rain.

The family made it safely back to Indiana last night. Tracy and I celebrate 32 years of marriage today. Praise God, we have been offered a car. What a relief that is. God is working out all the details in her body and out. Thank you Jesus!


Wednesday, August 6, 2014

Day 12

She has started to engraph. This is the first part of what is supposed to happen. This will bring another set of issues, but through all of them we continue to hope and pray that nothing unusual or threatening occurs. She is holding on very well. There isn't anything to do except persevere. She know this and is hanging on. There is a storm going on in her body,
and we pray that things settle down where they are supposed to. She was encouraged by all the cards she received this week. They are now hanging on her walls to encourage others that walk in as well as continue to make her smile as she looks at them. She feels the love.

Tuesday, August 5, 2014

Day 11

I will be glad when this week is over or at least the mucositis is over. Tough watching her suffer all day, and Zach watching all night. She was tanked with pain medicine yesterday which was scary to watch her go purple when she slept. Her oxygen dropped really low and was put on oxygen when sleeping. They reduced the amount but pain level is high. We are still trying to find the happy medium. This is still the normal, and nothing new has cropped up. They are being vigilant. Her BP and other lab numbers are good for her.
Although Konner could almost pass as shaven in this picture, she did not shave her head. Karly was well enough last Tuesday to get it done.
This was taken on Sunday. Her hair was starting to come out, so she wanted it shorter. I love this picture of the two of them. Zach has been awesome at caring for her during the night. She says, "I couldn't do it without him." I don't believe that he could do it apart from her. The next day her hair really started falling out.

We made a decision to not take the church house that was offered to us. It was an older home which needs quite a bit of work to make it safe for her. We currently think we will be at the off campus home that the Inn runs. We have a couple places working on a borrowed car for us. I'm sure that whatever happens car or not, another house or the Inn house, God has already got this. We just take each day as it comes.

Tracy, Trent, Konner and Kassidy will be returning home tomorrow, then the race begins for Tracy. He will settle into some kind of routine. We have done this a couple of other times. Again, just taking things one day at a time.

Thanks for keeping us in your prayers. We have been doing a lot of that around here. We appreciate our doctors and all our NIH friends who come by daily to visit.


Sunday, August 3, 2014

Day 9

The mucositis is very painful. We were told to expect this and the next 2 weeks can be awful. TPN(nutrition through PICC line) and PCA(patient pushes button for pain med) will be started. She needs constant drugs through lines including platelets. She reacted to them with mouth swelling. Will try again with benadryl on board. God is in control, so we pray about everything and worry about nothing. Pray for her pain and perseverance. She cannot take meds by mouth, so all of her heart medication will be changing. Pray they get this right. The next 2 weeks are critical, but next few months are an up hill battle.

Tyler left for the airport this morning. Already miss him and the laughter he brings everyday. He was still slightly anemic, but getting better.

Kassidy has been a huge help. She made cake for dessert yesterday. She cooked turkey bacon for breakfast. Just give her a task, even if she never tried it before, and she joyfully completes it.

Konner has had a cough, so she hasn't been able to interact with Karly. We are all wearing masks around Karly just to be safe.

The Children's Inn has a field trip Tuesday, so the girls are going horseback riding. It is a nice diversion for them.

We've had some good nurses over the last few days. Praise God!

Thankful for your prayers and encouraging cards.

Friday, August 1, 2014

Day 7

Well folks, she is neutropenic. This is what is supposed to happen. We were hoping to be spared the nasty side of effects of it all, but she has been in severe pain and cannot swallow. She just had a dose of Dilaudid that helped with the pain so she could eat, and just threw it all up. She is pretty miserable. Please keep praying that these nasty side effects will go away. This is also the time that dormant viral, bacterial and fungal infections can rear up. Pray against these in the Name of Jesus. We are still trying to regulate her BP and immunosuppressant drug. We have not had a very good day with nurses either. All these things we lift up to Jesus and give Him control.

Tracy, the girls, and I went to visit a house that a local church bought and lets a family use from the Children's Inn. I was excited about this prospect until I toured it today. It is old, so comes with issues like improper stove venting, window air conditioners that needs replaced, and a moldy basement. One of the bedrooms had water damage. They are fixing the stove venting, and I think getting at least one new window air conditioner. There is nothing they can do about the moldy, smelly basement or the water damage in the bedroom. Under normal circumstances with someone with a good immune system, this would be great. I'm afraid that for Karly it would cause issues. I will be talking with our team about it to see what they think. I also visited an off campus house that is part of the Children's Inn which would be great. Because of different pros and cons, it is difficult to pick what we should do, but I'm leaning toward the off campus Inn house rather than the church house because of breathing issues. Please pray over the weekend that God's plan for our living circumstances be revealed very clearly and that everyone would be on the same page with this. Also, we have put out the word that a car would be an advantage for when she is able to get out of the house, plus just getting to and from the grocery and hospital. We are looking for a borrowed car for about 3 months. We wouldn't put very many miles on it, and we can park it at either location safely(garage at Inn house and church parking lot at church house). If you know of someone willing to let us borrow a car close to Bethesda, MD, please let me know.

Also, I have not been able to get onto the hospital Internet connection for 3 days. Zach hasn't been on for more like 5-6 days. IT hasn't been very helpful yet. Please pray that we can get back on. Doing all the things I need to do from a phone or the library computer is more difficult.

These are the current issues. More inconvenient than life-threatening, but Jesus cares about them all.
Thanks for lifting up our concerns to our Heavenly Father.