Getting closer...

I had thought based on discussions with Karly's doctor that the transplant wouldn't happen this summer if it hadn't happened by May. Based on that information, we tentatively decided to travel to California for a friend's wedding, visit some very dear family friends, and see some amazing sites. We didn't make any hard set plans. We are used to not depending on anything more than a day away. Sure enough, our plans have been changed. We could choose to wait on the transplant, but looking at the new door God just opened, I'm thinking we are walking through it. Here's what happened on Monday.

On Monday, Karly had what appears to be something like a Transient Ischemic Attack. She had a brain CT and MRA; both look Karly normal. The best guess is that the IVIG caused a sluggish blood flow which temporarily caused something like a TIA. It lasted about 3 hours. It was scary. She is already doing all the things one would do to prevent something like this from happening. Just another symptom to move us closer to transplant.

We talked with our transplant doctor just before the "episode". The protocol for the DOCK8 haplo-transplant has been approved! He most probably will have to get an exception for her heart Ejection Fraction. We haven't got the report from her ECHO, but all indications show no more improvement in it. We have set the return date for June 29 to start the week-long qualification process. We hope to come home for 12 days between the testing and starting the transplant. Tyler would probably fly back with us. He will be her marrow donor. Karly interjected, "What a HUNK!"...Dr. Hickstein said that Karly would need a beefy specimen to receive an exceptional collection of cells.  Of course, all of this is subject to approval.

How do we feel about this? Let's ask Karly. Karly writes, "I feel like God has led me to this choice. When I was first presented with my less than desirable options of a transplant 2 years ago, I did not feel peace about it. I decided that I would wait for God's timing. Recently, with the addition of quandaries, I have felt more peace about the decision. With all the different unknowns to the transplant, I am being dependent on God. I have faith that God will carry me through predicable and unpredictable variables. However it turns out, I am happy with whatever God has in store for me. I give God all the glory!" 

How do I feel? I feel like we have prayed through this so much asking God to light the path we are to take, close any doors we try to walk through in our ignorance, and because we have complete trust in this we are truly walking the correct path. Do I get a pit in my stomach at times? Oh yes I do. It is usually when I start thinking about all that could go wrong having been there. So I quickly place my mind back to trusting God no matter what. I realize that this time is not last time. God's plan has not been revealed but one day at a time. I feel like Mt. Zion most of the time, "Those who trust in the LORD are like Mount Zion, which cannot be shaken but endures forever." Psalm 125:1 Also in Psalm 16:7,8, "I will praise the Lord who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because He is at my right hand, I will not be shaken." God is faithful!

Love,
Mom

Update on Karly

We returned home from NIH last Tuesday with an uneventful trip. YEAH! Other than her potassium being low, things were looking good. However, she did leave them with a sputum sample, because she had been goopy. She is growing things that need treated. We will be starting with an antibiotic nebulizer twice a day and see how this goes. We hope that IV antibiotics will not be necessary. She is not feeling well and sleeping bunches. We see her heart doctor on Friday to assess things again. One of the things we get asked is "what's next" because if she is to survive a bone marrow transplant is needed or a miraculous healing. The protocol for the haplo-transplant has been submitted, and we are waiting for final approval. It takes awhile because revisions are necessary. As it is currently written, her Ejection Fraction is too low. They may need to write for an exception. A question I've asked since her heart and kidneys became involved is, "Would having the transplant done at IU where her heart and kidney vascular people are available be a better option than NIH?" At this point, it still seems that the best option would be at NIH. However, we have asked if this is an option at IU. So far, the answer is "it's not an option". The transplant doctors have not talked, so a complete understanding has not happened. We are praying that God makes it obvious where this should happen and when.

A big praise for us was when a former homeschool student who graduated from HS with Tyler messaged me with the news that they were running a Bone Marrow Drive at IU Health on behalf of Karly. She is a nurse on the BMT floor. Not only does this give us another opportunity for a perfect match, but it also gave us a contact for a transplant doctor at IU. We are hoping that the IU and NIH transplant doctors will talk and decide where this halpo will take place.

Karly completed her Sociology class with a high A. She is amazing. For now, the plan is to have fun and see what God has in store for her this summer.

Love,
Mom

It's a good thing Karly dances through the rain so well!

We saw her Advanced Heart Failure doctor on April 4.  The doctor said that when she starts to think about adjusting Karly's medications, then you know you are doing well. It was decided to switch from 18 blood pressure pills a day to 1 pill once a day if her creatinine level was below 2 on Monday, April 7. We were looking forward to this.

Around 3:00am Monday morning, Karly woke up with her face and hands swollen and itching body wide. She took some Benadryl and was able to sleep for a few hours. Around 7:00am, I woke her up to see that she was still swollen. We went to the Day Hospital around 8:00am for her IVIG. Upon seeing Karly, the doctor was called. Since we did not know what was causing this problem, the IVIG was suspended until we could figure it out. She had a chest x-ray to check why she had pain when breathing in. The chest x-ray looked good. She had an ECHO which was unchanged from previously. The Allergy Team came by several times that day. The good news Monday was that her creatinine was 1.48. The bad news was that the kidney team wouldn't let her take an ACE inhibitor as it creates a problem for the kidneys since she needs IVIG every 3-4 weeks. This combination would be bad for Karly. Finally around 6:30pm with the swelling down, the IVIG was given. Allergy decided to withhold the BP meds that day which had been the last thing she took before the swelling occurred. On Tuesday, they challenged her with one of the BP meds., and it went fine. At that point, we switched that BP med from 9 pills a day(3 pills 3 times a day) to 2 pills once a day. This has been a happy move. The other BP med was discontinued until further determination of its allergy potential to her. This was okay with us also(lost 9 pills there). Karly's BP remains good even with one less drug. She still has a drop in her BP about 2Xweek where it goes too low...this week it dropped to 63/35. We haven't figured this out yet. She now has to take Lasix once a day which may have been part of the reason she was swollen on Monday. This in turn makes her potassium too low, so she takes potassium once a day with weekly blood draws to check all her electrolytes and creatinine. It is quite an array of drugs on a daily basis. She remarkably keeps it 'all happening'.

She had to drop her Physical Therapy Assisting class which is sad. She is trying very hard to complete the Sociology class. She is one hard-working girl. Despite all her challenges, God is using her story and experiences in life to speak with people. We find God's grace and mercy throughout our story. We love that He uses all our(yours too) circumstances to bring people closer to Him. He is Almighty! While her current situation is stable, she is not. Her renal artery balloons are temporary and her heart function has not increased. We do not know what God's plan is, but if she is to have a bone marrow transplant, her heart function must increase and the kidney function needs to remain the same or get better. We are following the path God sets before us. Pray for us to keep our eyes on HIM and go where the light leads.
Love,
Mom

Finally at home...

I just counted how many days Karly was in the hospital since Feb. 28...a total of 21 days 15 which were in the ICU. This wasn't much fun from anyone's perspective especially a 19 yr. old. However, Karly was so happy to be able to participate in the Campus Crusade Beach Evangelism. This brings a smile to her face amidst a long, tedious fight for survival. Whenever you get a chance, please ask.

Karly was presented in a large cardiology meeting on March 20. Although there remains to be many opinions about what is best for Karly, it was determined to stabilize her and get her to a heart and kidney specialist in Indiana. We had our one contact from Indiana who highly recommended the advanced heart failure specialist and vascular interventional radiologist specialist that we made contact with. They seemed willing to work with NIH and us in order to get Karly in the best shape we can and God-willing get her ready for the transplant.

The family (which includes Zach) drove Friday night and arrived Saturday morning to NIH. Karly wasn't having a very good day, but she was cheered up and smiley when they arrived. The plan became for Karly and I to fly directly from the NIH ICU to the Cardiac ICU in Methodist on Tuesday morning. The family made the 9 hour drive back to Indiana on Tuesday. Things moved rather quickly when we arrived to Methodist, and I was so grateful for how well the Methodist team received and worked on Karly. Wednesday morning, the vascular surgeon mapped her arteries and determined that ballooning both renal arteries would be best. He was able to successfully balloon both of her 90% blocked renal arteries and immediately got good blood flow into the kidneys. We have seen her BP(with the help of 3 blood pressure medications) hold at a nice pressure. Before, no matter how many drugs we were using her blood pressure wouldn't come down. Her creatinine has come down, and will hopefully keep coming down to a normal level. Her heart should be happier now, and we shouldn't see a worsening. We would love to see an improved heart over time. While all this is great news, it just means she is currently stable. We hope to see an improvement, so that she will qualify for her haplo-transplant. But, really what we hope for is a miraculous healing. No one is very excited about exposing her heart to more chemotherapy or her kidney to toxic drugs. Lord Come!

Now, let me tell you about all the exciting things we saw God provide. I will say that Karly and I were pretty nervous about leaving NIH. We have not had good experiences at other hospitals. When NIH wanted to send us some place else, we were expressively nervous, yet at the same time, gave it all to God. The Bible reading that day, said to "Trust Me and Don't Be Afraid" Okay, that is what we did. Sunday's reading was reminding me about my God of intricate details and overflowing abundance. I had no details, but said okay God has the details in the palm of His hand. The day before we are to leave our place of comfort, the reading was, "This is a time in your life when you must let go." Another reminder of what we do so often, but reminders help me to focus again. As we wait on our flight with 3 hours of delays, I'm reminded that delays are for a reason. Keep trusting. Once on our flight, Karly's tear duct tube all but comes out just as we are strapped in to take off. I'm not allowed out of my seat to find a mirror. I ask if she can just close her eyes and wait only to get no response which I know what that means. I lean over and ask two ladies sitting on the aisles across from me if they have a compact mirror and one does. They ask if everything is okay, because Karly looks visibly slumped over and in discomfort. I tell them a little of what is going on. They share with me that they are both nurses (not traveling together), but willing to help if needed. That is a relief. One of the nurses has just been speaking to Senators and Representatives to increase the funding at the NIH. Now isn't that neat! She also knew a friend of ours who just graduated from the School of Nursing at IWU. Isn't that neat! We finally get to Methodist and everyone is prepared for us...take us straight to her room and hook her up. We immediately are speaking to a doctor and getting a sense of what is going to happen. I had no idea that she was going to have the balloon/stent procedure done on Wed. morning, but knew that it was a possibility. We were just thrust into a whirlwind, but knew God was in control. I loved all the doctors and nurses we encountered...and that is saying something. I was pretty nervous about the procedure, but again God brought her safely out of it. While in the waiting room, a man gave me some insight about parking and staying on the campus. I asked where he was from only to find out that he was from a very small town that my grandpa and dad were from....unusual! This was timely because I had asked to speak to a social worker later that day, but didn't know what I really was after. Meeting this man helped me clarify what I was after. I met with the social worker that afternoon. She started by asking what kind of person Karly is. You cannot describe Karly without speaking about her faith. Immediately, the social worker says I knew it, "When I was in her room, I felt the Spirit of God." I described the trip that she had taken. Again the social worker is getting goose bumps. She had gone on a CRU beach evangelism trip in the 70's very similar to Karly's trip. They were able to share this experience. The social worker was able to get our family a room to stay in for as long as we needed. Fortunately, that was only 2 nights, but we were able to be all together. A friend of ours works at Methodist and got us lunch one day...what a treat! We had encounters with several Christian nurses building blocks of friendship and faith. We did not want for anything. God worked out ALL the details. I had told our people at NIH how nervous I was about leaving them, but was able to share all that God had done.

Karly is now at home. She is stable. Her BP is the best we've seen in years. We have an excellent team of doctors in Indiana now as well as in Maryland. We see her heart specialist every week at Methodist. We plan to travel to NIH on Sunday to get her Immunoglobulins replenished and repeat an ECHO. What marvelous news it would be to see her heart function return. Either way, we know that God has got this. Whatever His plan is for her, we are all in. Trusting God is the only way. May you find your complete trust in God also!

Love,
Mom

Karly keeps us on our toes...

Since my last post on February 27, a lot has happened. On Feb. 28, she went for a test called Lower Extremity Arterial Doppler(by the way that was normal). After lying down 30 minutes for the test, she sat up to leave and noticed that it was difficult to tie her shoes, walking to the car, etc. She took a couple breathing treatments at home with no improvement. We called our NIH doctor describing the symptoms, and she sent us to the ER. In the ER, she was put on oxygen, and eventually a CT was done. She had 1 liter fluid around and in her lungs, with an infiltrate present in her lung. They determined that this could resolve on its own and were going to send us home. Our NIH doctor wanted her observed overnight, so we stayed. She was started on some lasix to remove the fluid. Our NIH doctor wanted an ECHO, but BMH wouldn't do an ECHO. After thinking about what could be causing Karly's symptoms and BMH not thinking this was anything beyond an infection, our NIH doc decided she should fly to NIH. She seemed improved, enough so that on Sunday morning, March 2, we could fly to NIH. We are thankful that the fluid was coming off nicely on lasix. After arriving at NIH, a follow up chest x-ray showed there was still some fluid but it was coming off. An immediate ECHO showed she had Congestive Heart Failure. Her Ejection Fraction(EF) had dropped from 50% on January 1, to 35% on March 2. Again, we are so grateful for our team of doctors here for getting to the issues quickly. Our goal that week was to make sure the fluid was off, adjust her meds to control her BP better, and get her to Panama City Beach, Florida with Campus Crusade for Christ. Meanwhile, we were waiting on some tests to determine a possible cause, what role her existing renal insufficiency is playing, and what do we do next.

Panama City Beach was an awesome experience for her. She learned more about God, made awesome friends, and I'm quite sure God used this trip and Karly's story in the lives of many. She had a very difficult time breathing. She couldn't go to some things, had to stop and rest a lot, and learn to cope with breathing difficulties. By the end of the week, she was pretty shot. She was flown directly from PCB to NIH. After assessing her, she was sent to the ICU. Her Ejection Fraction(EF) had dropped to 15-20% in 8 days. Nobody expected that. It is quite curious as to why this is happening. We only have speculation and are still looking for a cause. Meanwhile, this is a long haul. Her fluid overload is HUGE. Her kidney function is severe. Her prognosis unknown. Here comes a big BUT....

On Monday evening the ICU attending told me that one number they had seen earlier was back to perfect. He was rather impressed because this was unexpected. On Tuesday, they put in a Swan-Ganz Catheter which goes through her right atrium, her right ventricle, and into the pulmonary artery. This gives them precise numbers, so they can adjust medications and removal of fluid better. While the fluid level was more than they thought, the heart was better than they thought. In fact, an ECHO was done after the Swan went in, and the EF had come back to 33%. This got a "WOW" from the ICU attending. He said clearly he doesn't understand Karly and this situation. She has also been able to reduce the amount of oxygen she needs. She is still bed-ridden, sore, in pain from severe headaches(probably from high BP and BP medication), and really very sick. We don't know much beyond day to day right now. We do know that her numbers are trending in the right direction. Praise God! I was reminded today to read Psalm 139:

¹ You have searched me, Lord,
    and you know me.
² You know when I sit and when I rise;
    you perceive my thoughts from afar.
³ You discern my going out and my lying down;
    you are familiar with all my ways.
⁴ Before a word is on my tongue
    you, Lord, know it completely.
⁵ You hem me in behind and before,
    and you lay your hand upon me.
⁶ Such knowledge is too wonderful for me,
    too lofty for me to attain.

⁷ Where can I go from your Spirit?
    Where can I flee from your presence?
⁸ If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
⁹ If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
¹⁰ even there your hand will guide me,
    your right hand will hold me fast.
¹¹ If I say, “Surely the darkness will hide me
    and the light become night around me,”
¹² even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

¹³ For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
¹⁷ How precious to me are your thoughts, God!
    How vast is the sum of them!
¹⁸ Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

¹⁹ If only you, God, would slay the wicked!
    Away from me, you who are bloodthirsty!
²⁰ They speak of you with evil intent;
    your adversaries misuse your name.
²¹ Do I not hate those who hate you, Lord,
    and abhor those who are in rebellion against you?
²² I have nothing but hatred for them;
    I count them my enemies.
²³ Search me, God, and know my heart;
    test me and know my anxious thoughts.
²⁴ See if there is any offensive way in me,
    and lead me in the way everlasting.

God knows what is happening; we intercede for her; we trust God.  He is good.
He is trustworthy. Thank you for remembering us in prayer.

Love,

Mom

Another update for Karly

Since the last update on Karly a few things have happened. We went to IU Health to see a Vascular Interventional Radiologist. We really like him, and he instantly seemed bonded to our story. He said to consider him a part of our team. What a blessing! He believes she has something rare called Mid-Aortic Syndrome. Even if this is not the correct terminology, we are in pursuit of finding out more of what is happening in her body. She has several arteries and vessels that are severe to critical in narrowing, with some calcified areas as well. Everyone has come to the same conclusion about what to do, and all have decided that stenting wouldn't fix the renals arteries. Because this is more widespread, we have started on the dreaded steroids. For a Dock8 patient, this means that her immune system will be even more immune-suppressed which also means the viruses will be able to wreak havoc on her. What we are praying for is that God would protect her from this and that the steroid would fix all the vessels as soon as it can, so she can come off of it. We hope for her creatinine to come down. It has increased again a lot over the last month. After being on the steroid for a week, we will test the creatinine again to see if it has come down which means the steroid is working. In theory, if the creatinine comes down, then the blood pressure will come down.(Double-edged sword because the steroid can increase the blood pressure and cause swelling). So far, the blood pressure has been okay, with only a little noticeable swelling today in her hands. Also, if the creatinine comes down, she can get the CTA to look at the vessels and arteries around her heart. Right now, the dye used to look at this is a problem, but hopefully it will be okay after the creatinine comes down. These are just some of the things we are trying to achieve in the next month or so. We just keep track of one day at a time.
Thanks for praying with us!
Love,
Mom

3 years later....

It's very hard for me to believe that it's been 3 years since Kelsey passed away. I still remember it like yesterday. The girls think it seems forever ago. What different perspectives. Recently I had them write an essay. The theme was, "Do not sorrow, for the joy of the Lord is your strength." It allowed them to reflect. I loved reading their thoughts.They talked about why it is important to be filled with the joy that we receive through Christ saying, "Living in joy is to our benefit; it makes us stronger and gives God glory. We learn to give comfort when we have received comfort. We give joy when we attain joy. We learn patient endurance when we suffer. God wants us to bring Him glory through our sufferings. God knows about all these things. God is making us perfect through a process of refinement. The next time you face trials trust Him completely. Consider it pure joy that you face the trial, for that very trial will be used by God to develop your perseverance toward maturity." By reflecting, they had time to think about what is facing them next and what response they would have.  You always have a choice...either draw near to God or turn away. I was grateful that their response was drawing nearer to God.  

So what is next? We feel as though it is time to choose the haploid-transplant. Kassidy was tested last month. She does not carry the EBV virus which is pretty essential in Karly's donor. I am currently being tested. Tyler gets tested on Thursday. Trent is going with Karly in 3 weeks to be tested. While I may have all that is needed, I'm not ideal because I have older cells. At this point, we need Tyler or Trent to have all that is needed to be Karly's 1/2 match. Please pray with us. We continue to walk through the doors that become open. We pray that God makes every step clear to us. At the same time we ask that this cup pass us by. BUT in all things we pray for His will to be done and that we glorify in all that we do.

Love,
Mom