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.

Day 48

Wow. Time seems to be flying by once we hit outpatient. We barely have enough time to get things done. Of course, we have had Sara here since Saturday. She leaves tomorrow morning. We have enjoyed her company and her distractions. We have started learning some local ways to get around downtown like the Perimeter Shuttle and Bethesda Circulator. We rode the shuttle to dinner at the Inn on Monday. It went well. I rode the Circulator to Giant Tuesday to get groceries to make a meal Karly had been wanting, so decided to just cook like I cook at home for a crowd and invite the other house guests. Just about everybody joined us which was fun. Karly, Zach, and Sara rode the Circulator getting off at several spots to enjoy a lunch, bookstore, and Gelato. Because Karly's Creatinine(CR) has been getting higher and higher, we were asked to come in today instead of tomorrow for labs which revealed her CR over 2 now. They had us stay to give her 1 liter of fluids to see if this will make her kidneys happier. Another issue she is currently dealing with is Skin GVHD which is red and itchy. She also has some neuropathy(numbness and pain) of the finger tips and sides of her feet. The newest issue happening each on Monday and Tuesday is being lightheaded upon rising while seeing things through a Kaleidoscope and hearing Cicadas. Most of these things can be blamed on Tacrolimus being on the high side, but it is right where it should be. Not sure what to make of everything, but still just thinking Tacro is the bad guy. Just an update on the HHV6, it is still low positive. Please pray, pray, pray for these things. We are so thankful she doesn't feel completely horrible(easier for me to say). We had to forgo our trip to Great Falls, MD today, but we still hope to make it another time. I love the freedom of having a vehicle. I am so thankful for the ease of getting to places on & off campus and field trips for enjoyment and recovery. I have learned how to get into the garage at Woodmont without all the maneuvering. We have to go back to the hospital again on Friday to get labs rechecked. Another issue which would be helpful is knowing whether her renal arteries are still ballooned or are the balloons failing. The NIH isn't good enough at getting what we need, so there is talk if things continue to worsen of sending her back to Methodist for the test or to another hospital out here. Because she has history at Methodist, that seems to be the most reasonable approach instead of going to another location like Washington Hospital Center. It could be done quickly and not miss much of a beat here. Really just pray that God guides our path as always. We would all breath a sigh if the CR was lower from the fluids. We'll know more on Friday. At the same time, we have to stay pretty vigilant with how her heart responds to these excess fluids. We stopped a heart medication two days ago to see if it also was contributing to the CR increase. A balancing act. Yikerz! Also, the name of a new game Karly and Zach have been playing. It has been really great being at Woodmont. It offers some great things for long term families in that we can be more independent...part of community events. Sunday we will be walking to a Farmer's Market/Craft Fair, hopefully as a house, then grabbing lunch with the assistant manager. Monday some DC Chefs will be making yumminess in the Inn Kitchens therefore the event is called KitchINN. We will be attending and showing our thankfulness to those who donated to renovate the kitchens. Then we are off to the movies with the hospital rec. therapists. See what I mean...busy. Anyway, we just take one day at a time and are often changing our plans. Never-the-less, all is well. Thank you for praying!
Love,
Mom

Day 43

God is Good All The Time comes to my mind right now. Not just because things are going well, but I mean all the time.

Karly was discharged yesterday, and we moved into the Woodmont House which is sorta like the Children's Inn, but just off campus. It only houses 5 families at full capacity. It is very nice, quiet, and more like a family atmosphere. It is close to downtown and offers more adult type things for us. We will formally meet with a manager next week to find out all that is available. Sorry for not posting on the spot, but yesterday was non-stop with moving out of the Inn and out of the hospital by myself as Zach was sleeping and Karly couldn't help. Last night we went on a movie trip to the RIO Gaithersburg where we saw The Hundred-Foot Journey. We all totally enjoyed it.

We had to go to the hospital again today, then every Monday and Thursday for labs and check-ups. Her Creatinine is still unsettling reaching an all-time high since last weekend. Fortunately, it hasn't gone up any more this week...still just holding. Please pray that this number will return to normal and all labs stay normal by God's healing touch. The best guess is the Tacrolimus..it is a horrible drug. The nurses would hang it in IV form wearing a special blue gown and gloves and have another nurse confirm the drug. When Karly started taking it by mouth she had to chuckle because the nurse gave her a pair of gloves to wear to take it. Karly kinda just looked at her and said, "I'm putting it in my mouth." Oh, the stories.

I am so thankful for the loaner car. It has been invaluable over the move and the trips to and from the hospital. We feel so free and able to just go do whatever comes to Karly's mind. The Woodmont has a garage, and I'm getting the feel of the land and vehicle.

Zach gets to return to normal days and nights. Karly and Zach are playing in the recreation/fitness room as I type. We were sad to see the family go Tuesday morning, but it was the boost we needed at that time. This week has been busy, and our friend, Sara Coggins, is making a pit stop here on Saturday to visit us for about 5 days. Anyone who knows Sara knows she causes trouble in her wake.

We were blessed on Wednesday to be able share a bit of our story in an interview at the Children's Inn. We shared how the Inn has helped our family through 3 really tough long spells and accommodated the clan during holidays, how it has evolved to keep up with needed changes, and grown in programs that help families. When a family shows up at the Inn, they can truly know that they have a place to rest and eat. Caregivers and patients alike stay well. When you have a sick person in the family, it affects the entire family, and the Inn is good at caring for the whole family. They will be celebrating 25 years and are putting together a video to raise awareness, thank their donors, and hopefully get more donors in showing how this "Place like Home" is invaluable. We have been going to NIH since February 2001. The Children's Inn has always been a place to relax, eat, meet others, and give kids a place to play and be kids after the long, often difficult days at the hospital. It has created so many programs over the years that help kids express themselves through art, learn other skills, keep up with school, go on cultural field trips, visit museums, and the list goes on.

We are all thankful for your prayers. I've seen patients go home after 60 some days and as much as 100 some days. Pray that we get the lesser, but stay content with the process. God Is Good All The Time!
Love,
Mom

Day 40

 

Sorry for the delay in posting.We were at my sister's 

all weekend having fun. The family arrived around 

1pm on Friday. We enjoyed the hugs, smooches, 

and smiling faces.

 

 

 

Later that day we decided to go on down to Hughesville. 

Karly wanted some Roadhouse chicken and ribs, so that 

is where we landed for a late dinner before arriving at 

Aunt Debbie's and Uncle Ridge's house.

Tyler Sandwich

Saturday we decided to go to Solomon's Island for 
whatever life was going to hand us. Karly was 
allowed to dangle her feet in the pool, and 
paddleboat with Zach. We just hung out, but really 

the best part was the fresh seafood. We enjoyed 
fresh steamed shrimp and crab legs while Tyler 
tried out mussels for the first time. Looks like 
Hannah and Rachel created a Tyler Sandwich. 
While it was a seafood restaurant, Trent 

commented that his burger was awesome and 
Zach said that his Crab Monte Cristo sandwich 
was one of the best sandwiches he ever had.

Sunday she was pretty tired and her skin GVHD decided to flare which is not comfortable. It is possible when it flares, it flares in her gut also. Anyway, she just rested all day. Food was big on the agenda for the weekend, so we continued with her menu that evening including mashed potatoes and gravy, sweet corn, fruit cobbler, and Uncle Ridge's grilled chicken thighs and legs.

Deb, Hannah, Konner, Tyler and
I went to mall to help Tyler find
some shoes. Looks like we got
distracted which is normal with
my sister. Tyler did get his shoes.

Monday was a day of packing, cleaning up after

ourselves, and of course more food...oven roasted

red potatoes, roasted vegetables, grilled pork chops,

and finishing all the desserts left in the house. As it

turned out, there was a catered Famous Dave meal

at the Inn when we got back. It was a great weekend.

Once back, labs were drawn. She is a little out of whack, but nothing too concerning. Her creatinine is still rising, so it would be awesome to see this come back down and normal would be great. Some other numbers are a little off. She is starting a new drug today that will alter some things. She starts another new drug tomorrow morning. We would like to see some of this be stabilized before going outpatient, but the team is talking about Wednesday or Thursday. She is still doing great! Pray for her to be strong in mind and spirit. She still has a long haul and won't be seeing the family again before she comes home.
Please keep praying that this transplant stays on course.
Thank you everyone!
Love,
Mom