5 month birthday

I felt like I just needed to give a brief update as today is Karly's 5-month birthday! She is doing so well. This is the most normal we've seen her in 5 years, so we have much to celebrate. She still goes for weekly labs, and we have been very happy with the results. The Creatinine is still high, but has been 1.9 for 2 weeks. We continue to just monkey around with the dosing of things and hang tough until we can start to wean them. We ask for prayer during this flu season, since the vaccine wasn't correct this year. We are remaining very vigilant with mask and hand washing. We return to NIH on January 7 for her 6-month check up even though it is early. Why? The good news is that she will be able to take the PTA class she had to drop last spring because of her heart and renal condition. What a praise! We are not sure how long that visit will be until they see her, but it shouldn't be very long. We look forward to seeing some friends we've met and also look forward to meeting others.

We had a Blessed Christmas! Being together and making those memories...fun, fun, fun!

I have been missing Kelsey. I've been dreaming of her. I've been wishing to give her big gushy hugs. I am thankful that I will see her again. I also think of my dad who died 5 yrs. ago tomorrow. We reminisce often about his silliness, his stories, his ways, and we cherish the memories we have as we continue traditions we had with him.

All I can say is love those around you for we do not know what tomorrow will bring. Live life with thanksgiving for all you have is from God.

Love,
Mom

Day 114

It is great to be home! I guess that is why I haven't written for awhile. I keep seeing things that were patiently waiting for my return. Two of the biggies were: Kassidy wanted to change rooms and I wanted to get the van back into the garage. Of course one thing leads to another. Happily, things are going very well. Karly has been getting labs drawn once a week. Except for the Creatinine remaining high, all are stable. We saw her advance congestive heart failure doctor last week. She was happy to see Karly. She would only add another heart medication, so we will see if this happens. It was sorta of based on the kidney ultrasound, so I really don't know if we need to add this medication. The kidney doppler ultrasound is worse than it was in June, but not so bad as to repeat the balloon procedure on the left renal artery unless her Creatinine rises higher and the BP increases as a norm. For the last 2 weeks the CR has remained the same and her BP except for a few days has been good. Karly has been attending her regular activities. Her days are more normal, so she is actually awake during the day. Continue to pray for her health to remain sick-free and stable...better than stable.

Well silly me. I asked Karly what she wanted to do for Christmas. She wanted to be somewhere warm. We started throwing around the idea of going on a short cruise. After researching if there was even a possibility, I finally asked the doctor if she could go. Sadly, she cannot. It would be too risky for her to be around more germs and so far away from medical care if something would arise. Then we asked her doctor to go too. Well, that got a chuckle. I should have known better. It is so hard to look at her and not think she is well. We will enjoy our time at home. It will be silly and full of warmth anyway.

Pray in general for us all to be healthy. I am so aware of people sniffling and coughing, so don't be surprised if I don a mask. We have all been healthy since I've been home. Praise Jesus!
Thank you for all your prayers and support! God is still good all the time!
Love,
Mom

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

Day 65

Lab numbers are still stable. CR(creatinine) has come down to an acceptable high. BP and HR still running higher than we like. Her tacrolimus was a little low, so had to increase dosage. She has periodic problems with kaleidoscope vision, sometimes with other symptoms like hearing cicadas, feeling lightheaded, tingly fingers, and numb hands. It doesn't usually last long. She had a several spell of this in early June which lasted 3 hours. The more recent times have been short-lived like 10-30 minutes. Don't really know what to make of it. She is seeing an ophthalmologist on Monday. If she doesn't see anything in the eyes, then we will keep trying to figure it out. The one in June mimicked a transient ischemic attack.

Karly and I enjoyed some shopping trips to Tysons Corner Mall on Thursday evening and Gaithersburg Rio on Friday. Zach enjoyed his usual activities...sleeping in late, reading, computer time, fitness work-out. Today I'm going on the NIH Natural History Museum trip. Karly is excited about Lora visiting her this weekend for some girl time. Zach will continue to do his usual. All is well on our home-front.

We are relaxing in Jesus' everlasting arms.
Love,
Mom

Day 60

Another stable report today. Her CR was a little lower than last week, so it is trending in the correct direction. Her BP(blood pressure) and HR(heart rate) are running a little higher than we like meaning her heart is working harder. All other numbers are where they would expect them to be. She slathered SPF 50 over her arms, legs, hands, and feet before going outside this weekend. The result: Skin GVHD didn't flare! This was good news. We hope that we have found a way to better tolerate this problem. Dermatology doctors were pleased with her progression. She will be evaluated Thursday by the allergy team to determine if she can have the flu shot. She will probably see someone from Cardiology also. Praising Jesus for all He's done and is yet to do!
Love,
Mom

Day 58

 Today we went on our own field trip to Great Falls, Maryland. It is only about 22 minutes from the house depending on traffic. We started with the intent to walk Billy Goat Trail B, because the reviews said Trail A was strenuous, rocky, slippery, etc. We ended up walking A because we went the wrong direction from our parking lot and found A first. Karly did great. She had to be very careful not to cut herself on the rocks and make sure her footings were secure, but it was awesome. We didn't get very far along Trail A because of her heart rate and stamina, but we enjoyed some neat sights of the Potomac River.

Can you find the little lizard in the next to last photo?
Can you see the green garter snake in the bottom photo?

















On the map you can see Anglers which is the point at which we hiked the Billie Goat Trail A.
After we left the Billie Goat Trail, we decided we had enough energy left to go view the falls.
I'm so glad we did. It was beautiful!We drove up to Great Falls Tavern Visitor Center and hiked to the Great Falls Overlook. In the last photo, if you look very closely, you can see a brown snake coiled up getting ready to head into the water. I am quite glad we didn't come across any Copperhead along the trail. Supposedly they are common in the park. God's creation all day!

Day 57(September 19)

We finally had our first Spanish lesson. Now we have homework. Friday afternoon we were all reading books, and Karly and Zach fell asleep. I love Friday nights at the house when we get together and eat. Since we are the only family at the house right now, we skipped the games and went out to a restaurant for dinner...one of Zach's favorite....mexican. It was super fun to get to know the manager better, and the food was yummy!

Day 56(September 18)

Clinic Day. Her labs are about the same, so I guess that is good. The CR is still running high, but seems to just be hanging out there. Her BP and heart rate have been a little higher for some reason. Her skin GVHD is manageable and tolerable. All in all, things are still going well. Karly and Zach enjoyed a very awesome time with a group from the Inn on the Young Adult Night Out(YANO). They went to Top Golf Alexandria. All I know was they seemed really happy went they got back to the house. I was able to meet up with a mom I've met for dinner at the NIH Western BBQ event. We enjoy each others company.

Day 55(September 17)

I went sailing with a group from the Children's Inn on Wednesday, Sept. 17. The man has been taking groups for several years. While it wasn't a windy day to sail, I enjoyed the peacefulness of the weather, a book, the scenery, and of course the Bay. Karly didn't feel as though her skin GVHD would do well with that many hours on the water, so they just stayed around the house all day.

                                                       

Day 54

Nice weekend! Sunday we walked to the Farmer's Market with the one of the house managers and another house guest. We purchased some yummy sweet corn which we ate tonight(awesomely good), nectarines, and a beefy red tomato for momma. We also ate lunch together, and I thoroughly enjoyed a gyro pita sandwich. It was a beautiful day.

Monday was clinic day. All labs pretty much stayed the same. While we would love to see these numbers come down, we were very thankful they didn't rise. Doctors were pleased also, so we are going to try the normal Mon & Thurs schedule this week. The word "home" was also mentioned for the first time. There is a reason they keep people for 100 days, but so far, everything is going well. If this continues, we might be coming home within the month. We don't get our hopes up, but remain quite contented with where we are and what we are doing....one day at a time.

We were excited to attend a special event at the Inn yesterday. It was to show appreciation for the donor's who made it possible to renovate two of the kitchen areas. There were some famous chefs from the DC area. We tasted several samples and then scurried off to the hospital for the movie trip. We are so glad to be able to stay busy and do normal things.

Today was a "stay at home" day. I made Karly some cinnamon rolls from a gluten-free mix. They were more like sticky buns. I think I will make them from scratch in the future. The smell gave way to my decision to make Zach and I some also. Now, those turned out tasty.

 After the rolls were finished, we walked to a nearby park to play tennis. Now that was fun. I would like to do that more often. We saw the strangest thing...a squirrel drinking from a dog dish placed at that fountain. The squirrel was so cute nibbling on his nut that we had to take a photo.










After tennis, we had a 3-hr knitting lesson. I learned two stiches:   stockinette and purl. Karly even learned the ribbing which she will teach me later. I took the shuttle over to the Inn for the massage man. When nobody else is waiting, he works with my super out of whack neck, head, shoulders and even my legs so he tells me. He gives me pointers and exercises that help keep me out of my severe headaches. By the time I got back to the house, Karly and Zach had left on the Circulator to get a few groceries.


One more thing. The doctor told me that we all have to get flu shots. Tracy is the only one in our family that has ever had one. We just never get the flu. Anyway, we cannot take any chances and must have the flu shot. The doctor is not flexing on this one. That holds true with anyone who expects to spend any amount of time with her....close friends, family, grandparents, and if they don't she cannot go hang out with you without wearing a mask and gloves. She will have to probably do that in certain scenarios. I don't know all the restrictions. Currently if she is in a crowded area, then she has to wear a mask..like on a bus, or in a movie theater or restaurant when not eating. I will be getting mine before I leave here. Another thing to know is that if you choose to take the flu mist, then she cannot be around you for about 3-4 weeks. Take that into consideration when choosing what you will do. She is just a baby when it come to her immune system and must be careful. Thanks for understanding.

As always, thankful for you, your prayers, your help, your encouragement and all that sustains us in these times.
Love,
Mom

Day 50(September 12)

Friday, Sept.12 was Day 50...the halfway point of coming home. Of course, this isn't any kind of magic number, just a guess...could be sooner or later...but at the rate we are going maybe sooner.
Sept 11(Scientific Day) and Sept 12(Survivorship Day) celebrated "Twenty years of Allogeneic Stem Cell and Bone Marrow Transplantation at NIH" After Karly's appointments Friday morning, we made it to the end of the caregiver talk, but just in time for the Survivorship Panel. They had 5 transplant survivors share their stories...each one for a different disease. I loved the fact that 3 of the 5 shared just how important their Christian Faith was in the process. That stood out the most. The first transplanted patient here at NIH, 21 yrs. ago, spoke. He didn't speak English, but was translated. He didn't speak about his disease, but rather started out with a verse from John 5:5-15. Wow! He related how Bethesda NIH was his Bethesda and how Jesus used this place to heal him. He was extremely thankful as was the many survivors that were present. As Karly gathered for the Survivorship Photo, she was told she was the baby one of the group...only 50 days. She was surrounded by 4 yrs, 6 yrs, and 10 yrs. I keep saying as a believer there is such power in your story. You can relate and learn from the stories living out their FAITH because those stories are the ones that have living power. At the reception following the panel discussion, the survivors signed a tree that was made for the celebration by a couple of the recreational therapists. Can you find Karly 2014? I love God's timing. The celebration was just what we needed at the end of that week.

Friday's labs were about the same as the rest of the week. Creatinine ranging from 1.98 to over 2  back to 1.96...these are mostly the same. We were mostly excited that it didn't go higher. After the liter of fluids on Wed, her heart number was higher on Friday. We hope that this was just a bump from the fluid. We will know more on Monday. She overall feels okay...doesn't notice a huge change, but the molluscum seem to be lessening around her eyes and on her face. We can see the whites of her eyes again. The Skin GVHD seems to be the biggest challenge for her as that is what makes her feel uncomfortable...well so does the gut, but not as much as it comes and goes. All of these are the things that keep us here. These are the things that need to stabilize and fall into a routine...predictable..so we know the cause and effect...so when they see the labs they have an idea of what is happening at home. Anyway, we are thankful and grateful for all that is happening...for the prayers..for the community that sustains us...for the car...for our housing...for the opportunities...for the life we have. May you all be thankful every moment of everyday. It is a choice!

 For although they knew God, they neither glorified him as God nor gave thanks to him, but their thinking became futile and their foolish hearts were darkened. Romans 1:21 

Devote yourselves to prayer, being watchful and thankful. Colossians 4:2

Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Colossians 3:15

 Give thanks in all circumstances; for this is God's will for you in Christ Jesus. 1 Thessalonians 5:18

Therefore, since we are receiving a kingdom that cannot be shaken, let us be thankful, and so worship God acceptably with reverence and awe. Hebrews 12:28

So many more to choose from....

Love,

Mom

 

Day 49

Entrance #2

I thought I would share some photos of where we are staying. It is really nice and feels very comfortable. Here we are at 8324 Woodmont Avenue, Bethesda, MD 20814. We walk through the front door to the entrance displaying the stars showcasing the donors and where we sign in and out. If we continued up the stairs in this second photo, you could access the 2nd and 3rd floors where the bedrooms are. In the 3rd photo we will proceed into the community kitchen. I have enjoyed cooking here better than the Inn. It is easier to find things and clean up after ourselves. We generally eat in the kitchen when it is just us. From there we walk into the large dining room where as a house we gather to eat and play games on Friday nights. You can see the manager's office on the left side of photo 4.

Kitchen #3

Dining Room #4

Family Room #5

Family Room looking out onto the patio #6

2nd floor business office and Rm 204, Our Room #7

Inside our bedroom looking out to balcony #8

Our Bathroom #9

Photos #5 & #6 are the family room where we watch movies. I enjoyed a book on the patio today.