Induction Day #16

     I wanted to hop on and give everyone an update on Kurt's progress so far. He is on day #16 (out of 29) of the induction phase. Yesterday (Day #15) was a chemo day. He received two chemo drugs through his PICC line and restarted steroids for another 7 day period. His clotting factors were low again, so he received two bags of "Cryo," which is basically the individual clotting factors pulled out from the plasma. It's pretty amazing how they can separate blood! The gold liquid you see in the IV bag above is the Cryo. This morning, his hemoglobin was also low, so he is currently getting some blood as well. Transfusions are pretty routine with Leukemia treatment, as the body is unable to make new blood cells.     

    Earlier in the week, we had noticed that Kurt's heart rate was higher and his blood pressure lower. We learned that his sodium was low. The doctors were able to alter the sodium levels in his fluids and both the heart rate and blood pressure improved. Fluids in the body need to bind with sodium to be retained and because his sodium was low, he was essentially still dehydrated while receiving all those fluids! We are thankful it seems to have been an easy fix. 

    Kurt has been feeling well this week. We have found that frequent snacks helped to maintain his glucose levels (though they will go up with steroids this week) and nausea. He hasn't been nauseous since the new snack regimen. He is eating really well and, besides some fatigue. is doing great! This is such a blessing to us. He lost a little weight but the doctor said this morning that weight loss could have been from the dehydration. He was back to his baseline weight today!! Our prayers are being answered daily. Chemo does have a cumulative effect, so we keep praying that he will continue to tolerate things very well.  

    Hospital life isn't very entertaining, but we have enjoyed movies, books, and just being together. We love getting updates from the kids. They have started making "Movies" for us using Hazel's ipod. We've enjoyed watching "Mighty Max" defeat the "Pantser" (Hazel as the villain) along with Police Woman Mabelle. Max is finally mastering riding his bike with training wheels (he hated it for the longest time....😜) and the girls taught him how to play Mario Kart on the Nintendo Switch. He's pretty proud of himself and gets embarrassed when he tells us he won a race. He covers his eyes and I can see his dimples pop out! The girls have been enjoying reading at home. Hazel loves to call and talk over Harry Potter with me, which I love. We will certainly be more than ready to be home with them. 

    We did get to talk to the discharge nurse this week about what things will look like when Kurt comes home. Lots of cleaning, hand washing, nurse visits and clinic appointments to come! Some chemo will require Kurt to be admitted for 3-5 days, but those admissions will be mapped out for us and we will have time to prepare. It was so refreshing to talk about getting out of here! I get to learn how to flush Kurt's PICC line, which sounds fun to me and probably a little scary to him! 

    Kurt's treatment plan is a three year plan. It seems daunting to think about three years of this, but we will take one day at a time and we are thankful for each one! Kurt is in the first phase of treatment "induction" now. The goal of induction is remission. Without remission, induction is repeated--we are really praying for remission the first time. After induction, we move to either the trial drug phase (if he is selected--we will know this after the bone marrow biopsy at the end of induction) or to Consolidation Therapy. Consolidation therapy involves more chemo treatments over a 56 day period. Consolidation is followed by Interim Maintenance Therapy for 49 days, Delayed Intensification Therapy for 50 days, and then Maintenance Therapy for the remainder of those three years. The intensity of treatments will decrease over time, but as long as Kurt is on some type of chemo, his immune system will be impacted. This will grow less over time, but is a huge concern to us as the world deals with COVID and we approach flu season. Even the slightest cold could be very difficult for him to handle--especially right now. 

    Several people have asked us about the need for a transplant, but we really don't know if he will need one at this point. Several factors go into transplant decisions (genetic factors/chromosome mutations and translocations, response to chemo, remission/relapse). So far, Kurt doesn't have any chromosome mutations, but we do still have some DNA testing pending. If he does get a transplant, that will alter the course of treatment. It's nice to have a "road map" forward but we know that any illness, reaction to drugs, relapse....could mean a deviation from the path. Leukemia can be a beast because things can really turn on a dime quickly. Jesus is really teaching us to live with thankful hearts in each moment. 

    We appreciate all of your prayers and encouragement. Please continue to pray for protection from infection or complications, no side effects from chemo drugs, for chemo to work perfectly, and for Kurt to be in remission and stay there! 

With Love, 

Priscilla 

Let Your Light Shine

 "You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all the house. In the same way, let your light shine before others, so that they may see your good works and give glory to the Father who is in heaven." Matthew 5:14-16

    One of the first songs I learned in Sunday school was "This Little Light of Mine." As we twirled our chubby fingers in the air and sang as loudly as possible, did we realize with what boldness we sang out those words? We were going to let our "lights shine" no matter what! We certainly did not want Satan to "pppfffttt" it out and energetically stomped our feet to let him know we meant business. As an adult, I don't often sing that rousing tune, especially now that our children are a bit older and Max's favorite is "I love you Lord" (that boy melts my heart!), but we do frequently listen to the words of Matthew 5 on the Slugs and Bugs Sing the Bible Vol. 2.  I found that song running through my head as I read the first few chapters of Matthew this morning. 

    Recently, I have longed to be in the four gospels, longed to hear again the words Jesus spoke. There is a closeness there that I want to wrap myself in like a cozy blanket on a bleak winter's day. I paused today, as I read those familiar words again...let your light shine--shine so that others may see---giving God glory. When our lives took a sharp turn with the word "Leukemia," I immediately desired to know why. Why? Why our family? Why now? Why Kurt? And I didn't ask in a whining, woe is me attitude at that first moment, though I am sure on low days I will wrestle there and need to refocus on Christ, but I wanted to know what purpose this journey will serve for God's kingdom. I felt that if I knew, I could march forward in confidence.  While I don't know all the reasons and may not see why God allowed this in our lives on this side of heaven, I know God has already challenged me in many ways to "let my light shine" for Him. There is something about that moment when life suddenly tilts on its axis--everything goes blurry and confused, and then suddenly you land on your new plane of existence. Some things become sharply clear. For me, the moment Kurt was diagnosed, I shook off any fears I had of sharing the gospel and being bold in love for others. The nervous butterflies are still there, but, below that, there is a steely resolve to be bold in the only hope I have, have ever had--in my savior. No matter what the "why" might be and no matter if I ever know it, I know that following Jesus and letting my light shine in the darkness through this and whatever else life might throw at us is worth it if it brings Him glory. 

     When you look at our journey, I hope you don't look at us as much as you look towards Jesus. Whatever "good works" we may do in our lives, the strength to do them and the very desires to do them, come from Christ. The good works are only good if they bring Him glory. And even though I will keep my light shining, sometimes the darkness comes very close. I cried out in the shower (why is the shower such a good place to cry?) that frankly, I just didn't want to have to do this. I just wanted to push pause and reset my world. I didn't want to keep picking up feet and take another step in the heavy quicksand pulling me down. I remembered what Jesus prayed before the cross, "My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as you will." Jesus met me in my grief there and I know He understands my grieving heart better than anyone else can. I am learning to pray with a "nevertheless" daily, to talk to my Father and tell Him my requests, but to always add the "nevertheless" knowing His will is higher, better, and more desirable than my own. 

    All of the grief, anxieties, worries, and normal human reactions to trauma still plague me. Knowing truth and choosing daily to follow Christ doesn't mean we are released from our struggle against our human nature, but when my eyes are trained on Him, I am able to see my grief, anxieties and worries in their proper sphere. I am able to see them as the temporal things they are and look beyond to a King and a Kingdom that offer eternal hope. Do I fail at this? Yes. Do I want to despair, give up, wail to the top of my lungs. Yes (and sometimes I do those things). But---the light... my little light shines...it grows in the darkness as I train my eyes on it, opening my pupils, driving back the darkness until the shadows disappear.  I have hope in that even after Jesus wept in Gethsemane, walked the lonely road to the cross, and spent three days in darkness, LIGHT burst through, the stone was rolled away and He lives. 

May that same light shine in us now and in the days to come. 

-Priscilla 

    

Chemo, Rapunzel, and everlasting joy...

 

Yesterday was day 8 of the induction process and it was also chemo day for Kurt. Thankfully, it was also the beginning of a 7 day break from steroids! In Leukemia treatment, steroids count as chemo too, but every couple of days he receives one or more of the "powerful" meds. Yesterday, Kurt received a dose of Methotrexate directly into his spine (he gets three of these treatments to protect his CNS during induction--one more to go!). He was also given vincristine and daunorubicin via his PICC line. Kurt did great during the administration of these medications and continues to prove that he really is Superman. 

When the oncologists do the spinal injection of Methotrexate, they first take out some spinal fluid to be tested before injecting the medication. The results from Kurt's first spinal fluid tests were negative for any cancer cells in the CNS. This is great news! We pray that this proactive treatment will continue to protect those areas of the body. They left the tubes of spinal fluid on the computer desk to be picked up, so I had to snap a picture. His spinal fluid looked beautiful and crystal clear to me! 

When Kurt was admitted, his blast cell count in his blood (the bad cells that shouldn't be there) was around 16,000. After 8 days of treatment, his blast cells were 10. Not 10,000---10! It is wonderful to see that the chemo is working and working quickly. The best way to really see what is happening with Leukemia cells is a bone marrow biopsy. Kurt will have another biopsy to determine remission on day 29. Measuring the blast cells in the blood does let us know chemo is working well and that there should also be a dramatic decrease in those cells in the marrow too. When Kurt has the biopsy on day 29, they will do MRD (Minimal Residual Disease) Testing on the bone marrow. This can measure how many cancer cells are in the marrow (1 out of 10,000--1 out of 100,000--1 out of 1,000,000). We are praying for no evidence of disease! 

As his blast cell counts fall, so does his WBC. In a healthy person your WBC usually ranges from 4,000-10,000. If you are sick with an illness, your WBC rises. With Kurt's type of ALL, his WBC rose dramatically upon diagnosis. I think the highest count we saw before they started to drop was around 25,000. Some ALL patients are admitted with WBC's in the 100,000+ ranges. We are thankful his never got to that level. Even though he had a lot of WBCs, the ones his body was making were broken or immature. They were crowding out the healthy cells and making his RBCs low. Yesterday, Kurt's WBC was 1,000. This number will fall to zero over the next couple of days as the chemo impedes cell growth/kills cells. This is the time he is most vulnerable to infections and this is one of the reasons why he is hospitalized and watched so carefully during induction. He takes a lot of prophylactic medications to prevent infections too. He has also had two blood transfusions and probably has more to come to keep his RBC levels up. 

Kurt's next big chemo day will be on day 15. He will receive the vincristine and daunorubicin again, along with restarting the steroid (Dexamethasone) for another 7 day period. So far, he is feeling really well. There has been some fatigue and a bit of nausea this morning, but he's doing great overall. 

Looking out from the 11th floor has me feeling a bit like Rapunzel in her tower. Our family loves Disney's Rapunzel (Frying Pans, who knew?) and I keep thinking about her song at the very beginning of the film. She recounts all the things she does all day to keep busy. Who knows what skills Kurt and I may develop while we are here? Kurt's working on learning some tunes on his new Melodica and I have some hand-lettering supplies and some embroidery that I never seem to have time to work on at home. We have Bible studies, books, games...and yet our hearts long to be home. One thing chronic illness and now a journey with Leukemia has taught me is to cherish the ordinary days. Gifts from God we often take for granted are found in the simple daily tasks of an ordinary life. When I was younger, I was sure that I was destined for something great, something big, something people would notice. As I grew older and a little bit wiser, I realized that the greatest joys are in those normal moments of every day life--the joy of serving and not being noticed, in the quiet ways days easily flow into one another. These chaotic and strange days make me long for home---and not just my earthy home. I long for a home where the peace that floods those simple days will reign always. I have faith that God will rescue us from this "tower" and that we'll have some of those peaceful days again. I also have great joy and comfort in knowing that even if those days don't come again on this side of Heaven, I'll find them again there and they will never pass away. 

View from the top

 

    Yesterday, I finally made it back to the hospital to start my stay with Kurt. The visitation policy on Kurt's floor is always very strict and COVID has made it more so. While here, I am allowed to go downstairs to pick up food orders or things dropped off (though I should limit my visits downstairs). I cannot leave the building. If I do, my visit is over and I cannot return. Kurt only gets one visitor for this stay too. These are hard rules to navigate, though we understand and want Kurt along with the other patients to be protected. 

    Chemo begin on Wednesday. Kurt received a spinal injection of chemo, started steroids, and had two other chemo drugs via his PICC line. So far, he has tolerated those meds well. The steroids are making his glucose levels high, so he had to have that checked four times day. He also got a dose of insulin last night. The doctors have told us this will resolve once the steroids are stopped. His next dose of chemo drugs should be on Saturday. Today, we also found out that the fluid they took from his spine to check for malignancy came back negative. Praise God! We are so thankful for that good news. 

As I was making my way over to the hospital yesterday (thanks for the ride, Savannah!) it felt so odd to see UK's campus coming to life with the arrival of college students. Even in the midst of a pandemic, life marches forward. In a way, it seems as though life stopped and took a sudden, sharp dive last week. But isn't that always how these things tend to go? Sometimes, I am thankful for the sharp turns and steep dives because they don't require as much exertion during those anxious "wait and see" periods. A friend shared Psalm 57:1b with us last week: "...I will take refuge in the shadow of your wings until disaster has passed..." and I keep coming back to this verse. I feel like a weak little sparrow hiding under the wings of a much stronger father. Here, we are safe from the winds and storms that rage outside of his protection. Over the last couple of days, God has granted us so much peace. For someone who tends to want to fall into anxious thoughts, this has been such a blessing. It's a blessing that I know can only come from our good Father, through the prayers of those lifting us up to Him. Last night, I slept so well. I fell back asleep each time someone came in to do vitals or other checks. The first time I awoke and realized I had been sleeping so well, I quickly breathed "Thank you, Lord" before drifting back off. Those of you who know my past sleep issues, especially sleeping in other places, will understand the miracle of this. The biggest blessing is that I know, even when I don't sleep, when the way seems dark, I am sheltered beneath his wings. 

 We want to thank everyone for their generosity, prayers, and the different ways our family is being served: from encouraging notes and messages, to gifts for the children, food and gift cards, to ice cream--we are so thankful and so blessed by you! 

Kurt was excited to get some Grater's ice cream last night! Thanks, Bekah! 

Being on the 11th floor has its advantages: a room with a view. As we look down on Lexington, we are reminded to pray for our community, our friends, and family. As we peek out into the halls on occasion, we are reminded to pray for the thirty-ish other patients on this floor. I pray God also uses this journey to open our eyes more to the needs of others in our community and how we might meet those needs through prayer or other avenues. 

 

Please continue to pray for Kurt as treatment progresses. We are praying for: 

-wonderful tolerance for chemo drugs 

-as few side effects as possible 

-for protection from infection

-for sleep 

-for my health to continue to be stable 

-for our children at home 

-for grandparents caring for them

Much love in Christ, 

Priscilla 

Shadowlands

 On August 5th, 2020 Kurt was diagnosed with B-Cell ALL (Acute Lymphocytic Leukemia). This diagnosis came after a quick succession of appointments that were kicked off by some mild symptoms that started back in June. Kurt noticed dizziness when standing quickly, some fatigue while doing yard work, and PVC's (skipped/double heart beats). We assumed he was anemic and bloodwork seemed to point toward that or an infection initially. We retested and numbers improved. On July 28th, we repeated the bloodwork and third time. Kurt was feeling great--better than before and we assumed that whatever it was had resolved. On July 31st, our doctor called to let us know his bloodwork had returned and it was worse than the initial results in June. More concerning was the presence of immature cells in the bloodstream and blast cells. She urged us to get in to see a hematologist and oncologist as soon as possible. 

No one ever wants to hear those words. Our hearts sank, but we took courage in knowing God knew we were going to get that call. We have never left His caring and loving hands. Thanks to a friend in the medical field, we were able to get a Hematology and Oncology appointment Monday (August 3rd) morning. The doctor told us that he was sure there was an issue with Kurt's bone marrow, but the only way to really get a firm diagnosis was to do a bone marrow biopsy. On Tuesday, August 4th, he had a bone marrow biopsy. The procedure was pretty pain-free (until soreness later) and we came home to wait. 

Waiting is the worst part and we were told we had an appointment Friday to hear results. Instead, we got a call Wednesday to come in at noon to talk over the results. We learned that Kurt had ALL (Acute Lymphocytic Leukemia) at that appointment. ALL is more common in children (confirming what we already knew about Kurt being big kid!) and that he was considered a "unicorn" in that he was so healthy at diagnosis and his counts (while bad) were not as bad as they usually see. While ALL is a beast of an illness to have, it does have a more optimistic prognosis than some other adult Leukemias. Part of this has to do with Kurt's age, health overall, and that he can be treated with a young adult protocol. We have been blessed to hear the words "treatable" and even "cure." And while those words are not used lightly, we cling to the hope we have in Christ and the thought that it is possible! 

We were instructed to head to U.K. Hosptial to be admitted that afternoon. Kurt's immune system is extremely fragile right now and even something as simple as brushing his teeth could cause a problem. We are so thankful God led us to be careful during this COVID crisis. If we had been more lax, Kurt could have ended up very sick. 

Strangely, we almost felt some relief as we left the office. We knew what we are up against. We had hope. The hardest part of that drive was knowing we would have to tell our children. They have been through a lot with my own health issues over the years and we knew it would be hard to have dad "sick" and both of us gone during this process. God is guarding over their hearts and they are doing well now. 

The first part of leukemia treatment involves an "induction" phase where the end goal is remission. This means a 29 + day hospital stay. In the hospital, Kurt has been given a number of medications to protect him from fungal, bacterial, and viral infections. There are medicines to protect his kidneys too! He has had lots of bloodwork, a PICC line placed, and another biopsy. He also had some baseline tests to measure heart and kidney function. We learned he has the most common form of ALL: B-Cell and are currently waiting for a few other genetic markers to return before Chemo begins. 

One of the first things Kurt said to me after he was diagnosed was "Think of all the people I can share Jesus with because of this?! If it brings glory to Him, I am fine with any diagnosis."  He has been a pillar of strength this week. We have both had our sad moments and some anxious ones (that's always more me!), but God has been good to comfort us in those places. He has shown us such goodness through friends and family who have jumped into action to help support us. He has shown us mercy through a quick diagnosis, connections through friends, and by giving us a sense of hope in the diagnosis itself. 

Last week, Andrew Peterson's song "Dancing in the Minefields" kept playing in my head. If you have never heard it, google it now. These are the lyrics: 

Well, I was 19, you were 21
The year we got engaged
And everyone said we were much too young
But we did it anyway
We got the rings for 40 each
From a pawn shop down the road
And we said our vows
And took the leap now 15 years ago
And we went dancing in the minefields
We went sailing in the storms
And it was harder than we dreamed
But I believe that's what the promise is for
Well, "I do" are the two most famous last words
The beginning of the end
But to lose your life for another, I've heard
Is a good place to begin
'Cause the only way to find your life
Is to lay your own life down
And I believe it's an easy price
For the life that we have found
And we're dancing in the minefields
We're sailing in the storms
And this is harder than we dreamed
But I believe that's what the promise is for
That's what the promise is for
So when I lose my way, find me
And when I lose love's chains, bind me
At the end of all my faith to the end of all my days
When I forget my name, remind me
'Cause we bear the light of the Son of Man
So there's nothing left to fear
So I'll walk with you in the shadow lands
'Til the shadows disappear
'Cause He promised not to leave us
And His promises are true
So in the face of all this chaos
Baby, I can dance with you
So let's go dancing in the minefields
Let's go sailing in the storms
Oh, let's go dancing in the minefields
And kicking down the doors
Oh, let's go dancing in the minefields
And sailing in the storms
Oh, this is harder than we dreamed
But I believe that's what the promise is for
That's what the promise is for.

Kurt and weren't quite as young when we got married but plenty young enough at 22 and 25. In early 2021, we hope to celebrate our 15th wedding anniversary. We've been dancing through the minefields all these years together and we plan to keep dancing through this one. I am thankful I get to be the one to walk through these shadowlands with him. I'll keep walking, with Jesus' help, until they disappear. 

We are still processing everything that has happened, so I am sure I will post some more reflective thoughts later. Right now, Kurt is inpatient and we are waiting for chemo to being Tuesday or Wednesday. Because of the strict visitation policy, I am at home getting things settled and will go to be with him on chemo day. Once I go, I am not allowed to leave. If I leave, I cannot come back for the duration of his stay. This is VERY hard. 

Would you please pray for the following needs: 

-Kurt's protection from infection while in the hospital 

-That Kurt's chemo side effects will be as mild as possible and he will tolerate it beautifully! 

-That Kurt will achieve remission during this first round of treatment and get to come home at the end of the 29 days. 

-For each of our children, as we are away. Their little hearts are grieving in their own ways and we know they are anxious about the future. 

-For grandparents, as they care for our children 

-For sleep for me in the hospital and at home. For my own health issues to stay controlled.

-For some favor possibly in the visitation policy.

-For our little dog, Mattie, who is in her last days. 

Thank you all for praying for us. Thank you for all the messages, gifts of food, and all the other ways in which you have already blessed our family. I will post regular updates here and share them via social media. 

Thank you for walking with us. We're going sailing in the storms...

-Priscilla