Day 98

Praise His Holy Name! Day 98 and we are at the airport. Everything except Creatinine is good. She did have to start an additional antibiotic, because all her sinuses are growing gram neg bacteria. That's okay...hopefully the sensitivities come back susceptible then we continue on what she's started. Probably going to have ultrasound of kidneys sooner than scheduled. She is almost at her all time high like back in ICU in March. I didn't realize how high it had gotten back then. Good news is blood pressure has been pretty good and the ECHO showed improvement. We are thrilled. Please pray that her kidneys will be okay and whatever it is will be reversible. Finally can feel excited about coming home because we are boarding soon and the doors will shut and they cannot call us back. Whew! Looking forward to seeing family and friends...just tear up thinking about it. To God Be The Glory!
Love, 
Mom

Day 91

All plans are still a go for coming home a week from today. This is getting more exciting the closer we get. Last week, I couldn't say that I was content in leaving, but this week I have become more restless about being here. It is time. The Lord is preparing us to leave. We rest in the peace God has given us and look forward to where He leads. There will be a lot to do from this end, but all with a fabulous goal on the other end. We celebrated how far we've come with Karly's doctor and nurse case manager. It has been one long journey. I know the journey won't end, but how we can rejoice in it. Karly is all smiles when we talk about her dreams and goals, her future!

On a medical note, you all will be amazed at how awesome Karly looks. Like I said before, she looks well, so it is deceiving how fragile she is. Our guard is up. Please be on guard if you plan on being with her. SHE CANNOT be around you if you are sick or even have a cold. She hasn't felt this well for 5 years. She doesn't even remember what that felt like. She is walking in new territory. We have our appts in Indiana. Her BP has been better, but her Creatinine is still high. We are guessing that it is tacrolimus related, and the fact that she already had kidney disease just makes it worse. They will probably start weaning her from it in 3 months which is a bit on the early side. Please pray her body will withstand that process. Please pray that her kidneys will recover from the abuse of the drugs. We are headed back to the hospital today for an extra looksy and have some results decoded for us. Pray that these things will be normal or be returning to normal. We have been saying goodbye to some extra special people this week and next. It will be a weird yet great thing that we don't return for 3 months. Haven't done that in over 5 years either. Pray that she really does stay well enough for the next three months to keep us at home.

I was reminded again today from the devotional that God has called me to walk with HIM. He wants me to blaze a trail for others who desire to live in HIS peaceful presence. He uses me in my weakness. 1 Timothy 1:12, "I thank Him who has given me strength, Christ Jesus our Lord, because he judged me faithful, appointing me to his service."  I am still awed by this fact. Who am I that I can speak anything to others? All I can do is keep my eyes on Jesus and walk the path He shows me. If I am faithful, then I am useful in His service. Hebrews 10:23, " Let us hold fast the confession of our hope without wavering, for He who promised is faithful." Hebrews 11 talks about "by faith". We may never see the things we have hoped for, but we understand that God is faithful.
Love,
Mom

Day 87

We spent a fabulous weekend in Luray, VA with Debbie, Hannah, Rachel and a couple of their friends. Deana and her friend, Dave, joined us on Saturday. We started at the Luray Zoo home of the largest venemous snake collection on the East Coast. These snakes were quite entertaining...not your normal coiled lumps. Konner, I had to post the tarantula for your benefit. I loved watching the Capuchin Monkeys. In the evening, we thoroughly enjoyed a murder mystery dinner at the Mimslyn Inn. Sunday, the kids enjoyed zip lining through the woods. The final line started back in the woods and ended across the large open space up to the tower. Karly said she faced two fears...the heights and the snakes.

Karly is doing very well, although, the kidney and heart issues are still present. They are checking for causes of some other issues she's having, but if these pan out, then the fix is easy. We have her kidney and heart appointments scheduled in Indiana. Her CR is hanging out at basically 2.0. Her BP was not too elevated today. Next week starts her 100th day work-up so that we can come home on the 31st which is Day 98. We are cautiously excited. Happy Birthday to my sweet boy Trent!!!! We will officially celebrate as a family soon!

God knows! As long as we stay focused on Him, we will stay tuned to our response through the Holy Spirits guidance. May you all be focused and in tune.
Love,
Mom

Day 83

Weekend was awesome. Went to Gilley's on Saturday. We saw an interesting rendition of Godspell and enjoyed a yummy dinner. Sunday, we went to the movies and ate Uncle Ridge's famous grilled pork chops. Monday, we returned to our house whereupon it was requested I make homemade pizza. Zach and Karly went to their swing and salsa dance lessons while I enjoyed my Bible Study group via Skype.

Tuesday was clinic day. I don't have lab  results, but she is feeling and looking good. We have to remember how fragile she really is even though she looks marvelous. As each day leaves us we are thankful. The farther away from Day 1 we get, we are thankful yet again.  Karly and I met another DOCK8 patient, a 10 yr. old girl. She had the cutest southern accent...so precious. We will try to visit them again tomorrow. We have booked a flight home and hold it out to God. We continue to be busy which makes the time here buzz by. We have clinic again tomorrow, then a shopping trip for Karly and I. The kiddos were just too cute to pass up this photo opportunity, but Zach managed to hide before I could get the pic. I said I was done, but he could sense me hanging out at the foot of the bed. I grabbed the blanket to catch his smiling face!
"Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!" Psalm 46:10
Love,
Mom

Day 79

In exactly 3 weeks, we hit the 100 day mark! We were nervous about going forward with this transplant, but also knew without a doubt that it was God's timing to proceed. All we could do was trust in Him, keep our eyes and mind on Him, and let Him do all that is perfect and pleasing to Him. People often ask themselves "why me"? A friend I met out here who has survived multiple cancers and is now caring for her 25 yr old daughter in the midst of cancer from her deadly immune disease who is preparing for her bone marrow transplant next week, said why not me? I was watching Karly's story on youtube again this week. She initially asked "why me", but later realized that God will use her story for His good and for His glory. Sure, you can ask God, why me, and He may answer you now or you may get your answer much later, or never in your lifetime, but rest assured, He will not leave you or forsake you in your journey here on earth. The problem with the "why me" is the self-pity that keeps your eyes on yourself or your circumstance. The devotional the last 2 days has been reflecting on staying close to Jesus, your friend, your Lord, your Savior. Our journey has been uphill, downhill and all over the place and at times I think we do feel drained of energy, but fortunately those moments have been fleeting. We have chosen to grab hold of Jesus' hand and not let go. We have learned to trust our Lord and let Him control this journey.  We have trained our mind which has been a process of learning. How do you do this? Renew your mind everyday with Bible reading and make Jesus your best friend. We have been shown what to do. All you need to do is seek Him and He will draw near. James 4:8, "Draw near to God, and He will draw near to  you...." It is an action with a consequence. May all you actions reflect Christ!
Love,
Mom

Day 74

Labs are a little out of whack today, but love that the BP is normal. Her CR hit another new high today. Her sodium and phosphorus are high. We will have to hold the lasix this week to see what the CR will do. Pray her BP doesn't rise as a result. We hope to get some answers later this week after the MRA of the Brain and Renal Arteries are performed. She had a couple weird blister-like lesions on her hands this weekend. The first one was resolving, then another one cropped up on a different hand. Don't know what or why, but probably related to molluscum. At least, it is easy to blame it on that. It doesn't bother us. We just look forward to what another day will bring.

I loved the Jesus Calling devotional today. "Be willing to follow wherever Christ leads."  "You must walk by FAITH, not sight." Are you? I pray that you will walk where He leads and live keenly aware of His presence.

Love,
Mom

Day 72 & 73

 What a marvelous weekend! On Saturday, the sun was shining; the temperature 63. First, we stopped at the grave site of Francis Scott Key. Then we started our walk through historic Frederick, MD at this canal where a Farmer's Market was in progress. We enjoyed a meal at a local Irish Pub. It was interesting watching the people. Karly has been feeling more tired and her knee and ankle joints were very sore. It was still fun to see something new and get us out of our house.


Sunday was gorgeous also. The best part was just seeing Uncle Arthur, Karen and Carol, Michael and Jenna, Cora and Sophia. We met at Mike's Crab House and had a beautiful view of the water. I had a scrumptious seafood meal as did Karly and Zach. When in Maryland, eat like Marylanders. It was fun catching up on what's happening in our lives. Karen lives in Annapolis so she drove us into the historic part. We wandered around City Dock and up a few streets, around the State House, and through an Arts Festival. Again, Karly's skin GVHD acted up and her joints, but we had fun exploring for awhile.

Day 71

I went to the Natural History Museum last Saturday while Karly and Lora were off exploring Bethesda. I especially enjoyed the tarantula feeding. The big guy is holding a cricket suspended underneath him which they said would take about 4 hours to drain. Sunday, I grilled pork chops and prepared some oven-roasted potatoes and super yummy sweet corn from the Farmer's Market earlier that day. Monday, we were so excited to be able to meet 10 yr. old AJ from Nebraska. He is 14 months post-transplant. I was able to ask Sara several questions which helps me understand things to come. Monday and Thursday labs were okay. We were allowed to try lasix last weekend which definitely brought the BP back to normal. Her heart rate is still high. We are not allowed to take other BP medicine that could lower it right now. Also her CR came down as the tacro level went below therapeutic. As we increase tacro so does the CR increase.  It probably went high also because of the lasix. It is yucky high again. Her GVHD was worse again probably because tacro level was lower. As you can tell, it is quite the balancing act.
 

On Wednesday, we were blessed to be able to watch my sister and niece present at an Ethics Course for Freshman medical students at the Bethesda Naval Hospital, formerly known as The National Naval Medical Center. Several parents of difficult medical situations are asked to sit at a table after the presentation. The parent presents a 2-3 minute history of their situation. The medical students at the table ask questions that deal with ethics and things that would make them a better doctor. We were able to share our story at one table and lead the discussion. Ridge, Deana, and Debbie were among other table leaders. It felt useful. It is a fantastic program that all medical schools would benefit from. Afterwards, we were able to share a delicious meal from The Cheesecake Factory. Deana(sporting one of Karly's blond wigs) and Karly in photo to the left. Thursday evening was NIH Movie Night. We have mostly been at the House by ourselves. A mom and son(7 yr. old) from Jamaica moved in Wednesday, so we have another presence in the House. Tonight is game and dinner night at the House. Maybe we will get to know them better tonight. Karly, Zach and I will be going to a dance studio tonight to try Fox Trot and Swing Dance. We have a busy weekend planned. Frederick, Md on Saturday and Annapolis on Sunday. I am really excited about Sunday because we will be hanging out with my cousins. My sister will be joining us and maybe my uncle. All is well with us. Contentment, joy, peace and God's presence are with us. Things to pray about: she is getting the MRI of her Brain and Abdomen next Thursday. We hope to get some answers in regards to the Kaleidoscope vision, neurological symptoms, and arteries near her brain as well as see what is happening with the renal arteries. Thanks for praying. God is in control at all times!
Love,
Mom