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.
Love,
Mom

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.
https://www.facebook.com/photo.php?v=10152398570858191

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!
Love,
Mom

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.
Love,
Mom

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!
Love,
Mom

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.

Love,
Mom

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!
Love,
Mom

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!
Love,
Mom