Day +1 through Day +16: A recap of Facebook Posts

Day +1 update

The headache is still with us, unfortunately. Kurt had a CT scan and we are thankful it was clear! Now, his team is trying to discern if the headache is from one of the medications he’s taking, the DMSO preservative the cells were frozen in, or just the body’s response to the transplant itself. They are trying a “migraine cocktail” now with some backup plans for later if it doesn’t help. Kurt has been very miserable with little sleep. Praying God will take this headache away and give him sweet rest.

Later (5/19/21) After trying several medications, Kurt’s team decided to try the migraine medication, Imitrex. Thankfully, it has brought his headache down from a “9” to a “3”! Praise God! Hopefully, we can stay on top of it and it won’t come back. Thank you for praying with us today. God’s peace was unmistakably felt. Kurt was even able to eat some dinner and take a shower! God is good!

Day +2 and into +3

Kurt's headache on Day +1 was finally resolved after a hot shower and the migraine medication Imitrex. By yesterday morning, the headache was gone completely! Praise God!

Kurt is having more GI symptoms, including some mucositis. Thankfully, he doesn't have any open lesions in his mouth right now, but his throat and mouth are very red and painful. Another aggravating symptom is thick saliva--making it harder to swallow and adding to the nausea. He's talking a lot less and we've been remembering some of the sign language we used when our kiddos were babies. To help with the mucositis, his team has given him a couple different mouth washes with some pain reliever/numbing agents. He's trying to drink more to thin the saliva. Eating has been difficult but he's making an incredible effort. So far cold apple sauce and Carnation Breakfast Essentials are the winners. The dietitian is making a protein rich milkshake for him later today. We are thankful for his team, including dietary!

Kurt also spiked a fever last night. He had been dealing with a low grade fever all day. The doctors ordered cultures and a chest x-ray. They also do stool and urine tests. We are so thankful that every test has come back negative--another huge praise! Kurt's on a stronger IV antibiotic now just to be safe. Fevers are common after transplant without indicating infection we are told.

Kurt slept well last night and goals for today include: eating and drinking more, along with walking more. He's been more awake this morning, but post-transplant fatigue is rough. His body has been through so much and just needs to rest too.

Thank you for continuing to pray along side us. Each day is a gift from God that we don't take for granted--even the hard ones. As another patient on the floor told us while we were walking, "Everyday is a good day, but some are better than others."

Day +4

Last night, we found out that one of the cultures taken on Thursday grew a type of "gram positive" bacteria. The team told us they will allow the culture to continue to grow, so they can identify the bacteria. They even do DNA testing on bacteria! Kurt began a stronger antibiotic called vancomycin last night. We believe this bacteria may be the source of his fevers. The team will continue to draw blood and watch the cultures until they are all coming back negative. Thankfully, this type of bacteria is very susceptible to antibiotics. It's very scary to hear the word "infection" when dealing with Leukemia, but his team has assured us almost everyone deals with similar infections post-transplant and they are well equipped to handle it.

Kurt was up more today. He even managed to play his ukulele for a few minutes and help me with a puzzle. Unfortunately, his mouth and throat are still extremely sore. His entire GI tract isn't at all normal. Eating was a challenge again today, but he tried his best! We have a couple different mouth washes he can use, a throat spray, and he even tried a pediatric dose of morphine. Some post-transplant patients end up utilizing a pain pump. We hope Kurt can avoid it, but it is nice know medications are here if he needs them. Even though pain meds help, it is very hard to deal with mouth pain effectively. Once his new cells engraft and start working, his GI tract should begin to heal rapidly (though taste and appetite are often effected for months after). His doctor told us that the cells know what areas of the body are damaged and in pain and will go to those areas first once they start working! Again, we are left in awe of how wonderfully God made us.

I helped Kurt cut his hair tonight and he trimmed his beard. His hair is already starting to fall out in response to the chemo and radiation last week. We look forward to it growing back again. Until then, he's cozy in the cute fleece St. Louis Cardinals hats his mom made him!

Please continue to pray Kurt will be able to eat, find pain relief and relief from GI issues, the bacteria will be completely eradicated by the antibiotic, and that his new cells will begin to engraft next week and work beautifully.

Thank you!

Day +5

Not much new to report today! While we can't wait for the mouth/throat pain and GI issues to be gone, we are thankful for an uneventful day. Kurt's pain level is pretty much the same. Meds do help dull the pain and he was able to drink a lot more. It's still a challenge. He's been up and about a decent amount too.

The culture hasn't grown anything--that's good news! They will continue to check for a couple of days to be sure. His temperature has been perfectly normal. Yay!

Kurt did need platelets before bed, but those go really fast thanks to the new catheter. We are so thankful for all the blood donors. If you can donate, please know it is very much needed and very much appreciated!

Pressing on...

Day +6

Kurt didn't get much sleep last night--tummy issues, so this morning we did some reevaluating and his team landed on another medication to try to help with GI issues and added a pain pump to his care. While he's on a lower dose of pain medication, the pump allows him to be in charge of how often he gets relief. I think we hit on a happy middle ground--he got a lot of pain relief today and wasn't drowsy/loopy from meds either. Win! Win! Kurt told me this evening his pain level went from 7 to a 2! It is still very hard to swallow but we are hopeful managing the pain better will allow him to start eating more.

His doctor also clarified that most patients don't engraft until around days +14 to +20. In our ALL group on FB, patients have talked about beginning to engraft from day +10 all the way up to day +25. We pray Kurt will be on the earlier side of things but adjusted our expectations accordingly. I'm still not sure where I saw the 7 -14 days, but we've had so much information thrown at us my brain is probably a little scrambled. We pray God will sustain Kurt this week, that he will be able to eat more, get continued relief, and, that by next week, we will start to see signs that the new cells are working.

Day +7

Holding steady on day +7! The pain pump has really brought a lot of relief and Kurt was able to eat more today. Thankfully, his mouth and throat don't seem to be getting worse at this point. We pray that things will just stabilize and then get better. His GI issues are still pretty prevalent, so that's still a challenge. It makes sleep hard when frequent trips to the bathroom are necessary.

We both had an afternoon nap today and went for a walk this evening. We also caught up on the latest "The Chosen" episode. This one was a bit of a cliff-hanger. The verse repeated in the episode is part of a larger passage of Psalm 139 that we have been praying. I loved when Jesus told Simeon the Zealot, "I didn't need you. I wanted you."

Pressing onward in faith.

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Day +8

Not much new to report today! We are just trying to stay the course, get Kurt as much pain relief as possible, and find things he can tolerate to eat. Today's victory included a few bites of mashed potatoes! So far, most of his diet is liquid. He's trying to learn to like the Breeze and Boost type drinks.

Sleep is still a challenge with the GI issues, so we continue to pray for that as well. Kurt usually naps a fair bit throughout the day too and that helps make up for the deficit a bit.

Because the cultures haven't continued to grow, Kurt is on the last two days of IV antibiotics. After those finish, he'll go back to the regular prophylactic antibiotic Levaquin.

Thank you for praying and for your messages. They are encouraging and give us strength. We are praising God for protecting Kurt and giving him the strength to endure this. We pray that relief will soon be on the way. Come on little cells!

Day +10

The past few days have just been all about holding steady. A few positives that have happened: Kurt slept much better last night, his throat pain seems to have decreased, his GI symptoms seem a tad bit better, he finished up the stronger antibiotics and can return to the regular prophylactic, and he's been getting some more fluids down.

Kurt's Tacrolimus and Sirolimus levels were high yesterday, so Siro has been paused and Tacro lowered while those come down. One of the odd side effects of the Tacro being high is a burning sensation in the feet. Thankfully, a nice foot bath in cold water brings some lasting relief. Getting the immunosuppressant levels right is a balancing act!

Today, Kurt begins a prophylactic medication to prevent a reactivation of CMV (cytomegalovirus). This is just another step in the post-transplant process for patients who tested positive for CMV prior to transplant. Like Epstein Barr, CMV is something most people have been infected with and it lies dormant the majority of the time. However, the weakened immune system post transplant can open the door for a reactivation of the illness.

We continue to tweak pain meds to help Kurt eat. His pain is much less when he is just being still, but eating or talking are still a challenge. He does have a few open lesions in his mouth, but his throat is feeling and looking a bit better.

Would you please pray that we can manage Kurt's pain well and that he will be able to eat more? Ultimately, we pray that he will begin to engraft over the next week, so that his body can begin repairing this area. We continue to pray for protection against infection of every kind.

Thank you for all your support.

"Be joyful in hope, patient in affliction, and faithful in prayer." Romans 12:12

Day +11

After 12 days of all neutrophils, lymphocytes, monocytes, and WBCs being 0, we were thrilled to wake up to these labs today. Based on this, Kurt’s body is starting to engraft! Praise God! He needs to have three days in a row of his neutrophils at .5 or above to be considered engrafted. His numbers could teeter-totter for a few days, but we should start to see an overall rise over the next week.

What wonderful news at the end of a hard week! There’s only thankfulness! God is so merciful!

We pray these numbers will continue to rise, Kurt’s mouth and GI tract will heal, that he will continued to be protected from infection and that he will have the right amount of Graft vs Leukemia effect and no GVHD!

Day +12

Kurt's neutrophils continued to rise today to .62! The oncologist said that today is probably the first official day of engraftment. If the neutrophils stay above .5 for the next two days, he will be considered engrafted. We pray they will hold steady and continue to rise.

Kurt's mouth is still quite sore. He's still on a mostly liquid diet, but is drinking more. Mashed potatoes and beef broth have been a good meal and he's managed to eat some soggy Rice Krispies in almond milk. We continue to pray his entire GI tract will heal this week so he can eat more and reduce the pain meds.

Kurt is quite sleepy most of the time. His body is obviously exhausted from the whole process, but the pain meds make him a little sleepy too. Last night, he made it through two episodes of "I Love Lucy" and a shower without a nap!

Tomorrow, his Tacrolimus levels will be checked again and we are hopeful they have come down within range. The burning sensation in his feet has calmed down, so that's great.

We've been at UK 20 days today and are so thankful for their wonderful care. Of course, we are looking forward to going home. Every day brings us closer!

Please continue to pray that Kurt has a smooth engraftment process, that he is protected from infection, and that his body will accept these new cells perfectly. We pray they would kill off any remaining Leukemia cells to keep Kurt healthy and that they would not see his body as foreign.

Day +13

Happy Memorial Day!

Kurt’s neutrophils continue to rise! They are at 1.02 today! His mouth and GI symptoms seem to be very slowly starting to improve. His throat seems much better, but he still has some lesions in his mouth. He did manage to eat some soggy cereal this morning!

Eating, drink, and some good naps are ok the agenda. We are SO incredibly thankful.

Day +14

Kurt’s neutrophils are 1.24 today and he is considered officially engrafted!! He still has a long recovery ahead but a huge hurdle has been overcome! Praise God! Join us in offering Him praise with a thankful heart today!

Day +15 (Day 23 at UK)

Kurt’s neutrophils inched up a bit more to 1.27. His mouth and GI issues are continuing to heal. This morning he even ate a bowl of cereal! He looks and sounds so much better. It’s amazing the difference a week can make!

Tomorrow, Kurt’s Tacrolimus will be switched from an IV med to a pill form in preparation for going home. He’s still getting daily magnesium and potassium, as the Tacro depletes electrolytes. His IV fluids were reduced a bit more too. He hasn’t needed pain meds since Sunday/Monday. Nausea still strikes at times, but meds knock it out. So far, Kurt hasn’t needed a blood transfusion (pretty incredible), but he has needed platelets several times. Thankfully, he hasn’t needed any for several days.

The tentative plan is that he might get discharged early next week! We are looking forward to being home when it is safe. After discharge, Kurt will still have daily clinic appointments for several weeks.

We are so thankful for how well he is doing and for God’s many blessings and mercies. We continue to pray against infection and GVHD. We pray these new cells will thrive and the Leukemia will never return!

Day +16

The upward trend continues! Kurt's neutrophils were 1.76 today. He made it into the bottom of the normal range (1.6-6.1). His platelets also rose a bit on their own signifying that his red blood cells are also starting to recover. His hemoglobin is still pretty low at 7.1, but we have been told that it will recover last. Kurt's hemoglobin was 15 when he was admitted to start the transplant process, so he is certainly feeling the difference. It's pretty incredible that he hasn't need a blood transfusion so far. We'll see if his hemoglobin can hang on and start to rise, or if he'll end up with a transfusion in the next day or so. No matter what happens, that's a pretty amazing accomplishment. His doctor was impressed!

Nausea still continues to try to pop up throughout the day, but Kurt is eating more. He managed to eat some bites of biscuits and gravy this morning and just finished a bowl of cereal.

Tonight, he'll get to take his first oral dose of Tacrolimus.

Overall, the days are getting more boring which is exactly how we like it! We praise God for "boring" days.

The next big milestone will be on day +30 when they do bloodwork to check the % of donor cells vs. Kurt's cells. We pray that his cells will be 100% donor cells. This test will be repeated at day +60 and then Kurt will have his first post-transplant bone marrow biopsy around day +100.

Counting up one day at a time!

Day 0, Transplant Day

 

After a week of conditioning, Kurt received his stem cell transplant today at 2:28pm EST. Days -8 through -1 included: 11 total body radiation treatments, chemo, and three treatments of Thymoglobulin. Kurt had to deal with fatigue, nausea, fever, rash, and rigors (shaking). Today, a little over 9 months after his initial diagnosis, he received the gift of stem cells and the hope of a future without Leukemia. 

In the Leukemia world, Day 0 is transplant day, a second birthday, a re-birthday if you will. After some pre-meds (that made Kurt pretty drowsy), the transplant team brought up the frozen stem cells. This beautiful gift from a stranger in Europe arrived in Lexington, bringing hope and new life. We are so incredibly thankful for Kurt's donor and his sacrifice of time, comfort, and stem cells to save Kurt's life. 

Kurt received 4 syringes full of stem cells through the tri-fusion catheter in his chest. The oncologist infused them each slowly over a 30 minute period. During that time, Kurt was asked to eat hard candy, as preservative to protect the stem cells can cause a terrible taste in the mouth and tickling in the throat. He appropriately chose "LifeSavers" candy. 

And now, we wait for those cells to enter Kurt's bone marrow, engraft, and to produce cells. Engraftment generally takes 7-14 days. As we wait for them to begin to work, Kurt's own marrow and cells are dying or already destroyed. His counts will be non-existent. He will require blood transfusions, prophylactic medications to prevent infection, and careful observation. Kurt has also already began immunosuppressant medications that will keep the donor cells from attacking his body. We hope he will have Graft vs. Leukemia effect where the donor cells kill off any cancer cells they encounter, but we pray he does not have Graft vs. Host Disease (GVHD) where the donor cells attack his body. They thymoglobulin treatments he had pre-transplant will also help in preventing GVHD. 

Over the next two weeks, as we wait for the cells to engraft and begin to work, we pray that Kurt will be protected from infection, GVHD, and mucosistis (mouth sores/sores in the GI tract). We pray that his body will fully accept these new cells and that they will work beautifully for many years to come! 

Today, Kurt completed another part of the marathon that his fighting ALL. We come now to the longest part of his journey--the post-transplant healing. We have been told to expect a rough time for the next two weeks. We know we serve an awesome God who can take away these nasty side effects! We also know that if this prayer isn't answered the way we want, He will walk with us through the hard days. 

Thank you for coming along side us and praying. That you for all the messages and encouragement today and on many other days. Thank you for praying for and supporting our children. We love each of you!  

And the count down begins...

 

Last week was a busy one for Kurt! On Tuesday, we met with the radiation team and discussed the radiation treatments Kurt will have as a part of transplant. Kurt also went through the process of mapping, so the radiologists will know exactly where to "shoot" him. He was pretty disappointed to learn that he won't become the Hulk or gain other super powers. If you ask me, he's already proven he's Superman! 

Kurt will have a total of 11 total body irradiation treatments during transplant. The radiation serves two purposes: it will kill any leukemia cells that might be hiding out and it will kill off Kurt's own immune system, so that there is room for the new donor cells to engraft. 

On Tuesday afternoon, we met with Kurt's oncologist. We learned that the most recent biopsy shows that he is still MRD -! We are so thankful that the Blincyto worked so well for him. The spinal fluid they tested was also negative for leukemia! Kurt was cleared for transplant and signed all the consent forms. His donor donated stem cells last Tuesday and Wednesday. We learned, based on paperwork Kurt signed, that his donor is from Europe. We know he is likely a young male, but we aren't allowed to know any further information. We are so very thankful for him and hope to be able to thank him one day! 

Kurt's doctor also went over the plan for transplant with us. Kurt will be admitted on May 10th to begin the process. Here is the timeline she gave us: 

May 10th: Admit to UK (fluids, prep) Day -8 

May 11th: TBI (Total Body Irradiation) 3 Sessions Day -7 

May 12th: TBI 3 sessions Day -6

May 13th: TBI 3 sessions Day -5

May 14th: TBI 2 sessions Day -4

May 15th: Etoposide (Chemo) and Thymoglobulin Day -3

May 16th: Thymoglobulin, begin immunosuppressants Sirolimus and Tacrolimus Day -2

May 17th: Thymoglobulin Day -1

May 18th: Stem Cells Day 0 

After Kurt receives his stem cells, we begin to count up (Day +1, Day +2). We expect Kurt's new cells to engraft (begin to work) around day +7 to +14. Kurt will have a 4-6 week hospital stay and then daily clinic visits for several weeks. During the first 100 days, he is particularly susceptible to illness. When he reaches day 90-100, he will have his first biopsy and begin reducing the immunosuppressants. Hopefully, he will be able to be COVID vaccinated at 2-3 months post transplant. 

On Thursday, Kurt had his tri-fusion catheter placed. This is a relatively short procedure but took all day, as he got bumped back for an emergency. Unlike the PICC line that Kurt has had so far, the tri-fusion is in his chest and has three lumens instead of two. It should be much easier to use and take care of. Best of all, it should also have a lower infection risk. We are so thankful that Kurt never had an infection with the PICC lines during his treatment. Kurt was pretty sore for the first 24 hours, but is feeling much better now. 

It is hard to pack up and prepare for another lengthy hospital stay. We are so thankful for all the help we have had with our children and for all the prayers and encouragement we have received. We are both nervous about transplant but take courage in knowing we are safe in God's hands. 

As we head into transplant would you please join us in praying: 

-For Kurt to tolerate each new treatment well with minimal side effects. We specifically pray that he will NOT have mucositis (painful mouth sores/sores lining the digestive tract). This is a particularly painful side effect, prominent during transplants, often leading to weight loss and the need for a pain pump/feeding tube. God has protected Kurt from mouth sores so far and we pray that He will continue to do so! 

-For Kurt to be able to eat and maintain his weight during transplant 

-For Kurt's donor cells to engraft and work perfectly 

-For any remaining leukemia we can't see to be obliterated 

-For minimal Graft-vs-Host Disease (we want graft vs leukemia but we don't want the donor cells to attack Kurt's body) 

-For Kurt's organs to be protected during all of these treatments, particularly for his lungs, kidneys, liver, and GI tract to have no infections or complications 

-For Kurt to be protected from germs and the reactivation of dormant viruses like Epstein Barr or CMV

-For Kurt's heart to be encouraged and for God to give him peace and comfort daily 

-For our children at home to be comforted and have peace with mom and dad away for so long. We pray they will be protected from illness or injury during this time. We pray their hearts will feel God's loving care. 

-For our parents and family members caring for our children 

Thank you for praying with us and for us. If you would like get daily updates during transplant, please contact me for information regarding our Facebook group. 

At the Cliff's Edge

 

It's spring in Kentucky. The trees are putting on an early show with short bursts of color. The bright purples, pinks, and whites are a shock to the senses after the dull browns and grays of the long winter. The grass is starting to grow rapidly and has transformed from a dull, dark green into a vibrant, living, movement filled carpet that is so beautiful and bright it hurts the eyes. We are surrounded by new life. The birds are singing bright notes, the earth is teeming with living things. It's a low hum of life that will become louder each day until it reaches a shrill frenzy in the hot summer and regresses into sleep with the autumn days. 

We celebrated Easter and Christ's resurrection with a perfect blue sky day. I watched the bees happily making their way through the warm air. I listened carefully for the frogs singing in the evening, but I couldn't hear them from the hill on which my parents' house is perched. And while my eyes delighted in the colors and my skin relished the warm breezes, I also had to fight, claw my way out of the darkness, coldness that tries to control me. 

We've cruised past the one-year anniversary of Covid, one year of lock downs, isolation--one that was very different from all the years before. One year since I walked into a store, sat near a friend, hugged a friend, sat in our church, and heard voices lifted to Heaven. I could have made different choices early on in the pandemic, but God, in His wonderful grace and mercy, gave me peace regarding COVID, and also an odd desire to be careful that I couldn't always explain. I was fearful at first, like many others, but later it wasn't fear but some urging that kept me cautious. I thank God for that direction and how He kept Kurt safe. This time last year, Kurt first starting feeling faint at times, oddly out of breath. We chalked it up to getting older, being out of shape, and later I suspected Lyme disease, poor diet, anything, anything except Leukemia. 

Eight months ago, after months of isolation, church on the lawn, drive by birthdays, lots of Amazon orders and grocery pick ups, life was again thrown off in kilter an even greater way when Leukemia seemed to blindside us. I'm a researcher by nature and thankfully my degree has helped me to be able to find good sources of knowledge. What is at times a gift can also be a curse. I remember wishing during that time of waiting that I wish I didn't have the knowledge--just enough--to know that something was very, very wrong. They day we got the blood work back that sent us racing to a hematologist/oncologist, I saw the results first on the medical portal while in the van. We were somewhere in Indiana driving home from Missouri. I scrolled up and down frantically, reading the numbers again and again. I knew. My stomach sank through the floor of the car. My breath grew short. I felt bile in the back of my throat. "Whatever it is, it isn't good." I knew that. 

I think I have been reflecting on that day more recently, as we get closer to transplant day. A lot of those initial emotions have been washing over me again and again. There is fear of the unknown. No matter how much we read regarding transplant, no matter how much we feel prepared, we are stepping off another cliff and diving into a mysterious and unpredictable future. I, for one, am terribly afraid of heights. I can only climb onto the second or third rung of a ladder before I start become dizzy. I didn't expect the kind of cliff diving we would be called to do during the last thirteen months, but apparently metaphorical cliff diving also triggers the same dizzy, out of control feelings as I imagine the real thing does. 

The truth, however, is that we are always standing at the edge of a cliff, the edge of the mysterious and unknowable future. In the long run, as believers, we know the end of the story--the magnificent and glory-filled end. As finite humans, we don't know what's coming day to day, hour to hour, minute to minute, heartbeat to heartbeat. Leukemia, and I imagine any other life changing diagnosis, just brings the cliff edge into sharper view. What we once viewed through the hazy fog of our own weak willpower and human ability to think we are in control, is given over to a sharp, clear, binocular-like focus of the cliff's edge. We don't know if we will fall in the abyss or sprout wings and soar. Perhaps we will fall a little way and land on a surprisingly soft bed of grass or snow. We might be beaten, bruised, or impaled on the sharp rocks at the bottom. 

Approaching transplant is a bit like this. It's not a task that is undertaken lightly. It is a treatment reserved for when the "big guns" are needed. It's something to be avoided until it becomes absolutely necessary. It is a hope for a cure, but a road sometimes paved with hellish suffering. We won't know if Kurt will be among those who sail through or if he will be one who has a rocky road before him, until our feet leave the cliff's edge and and we jump headlong into the wind. 

I find myself rocking on the ocean of a thousand emotions. Some moments are so normal that they slip by unnoticed as they did before--the daily grind of dishes, laundry, school, bedtime routines, crafts, and family walks. Other moments are filled with such a grief-filled sorrow that I can only clasp the edges of my little boat, white-knuckled until they pass--folding his shirts, his wedding band on the dresser, the soft rustle of the bed as he climbs in--what if it all passes away? And I'm off, sailing through a private storm until my little boat catches, and the anchor pulls me back to calm waters. 

We are watching the sunrises and the sunsets from the cliff edge these days. They are frighteningly beautiful, so clear. Soon we will rise, dust off our feet, join hands and when he jumps into that darkness, I'll jump with him. We'll hold on tightly to the sides of the boat and trust God's hands will gently guide us through to the other side of the valley. 

"But those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." 

Isaiah 40:31

Early 2021 Re-Cap

     

(Kurt working on the Lego Disney Castle we got for Valentine's Day)

It has been a couple of months since I have done an update, so this will be a quick post to catch up on recent events in Kurt's battle against ALL.  

We really enjoyed the Christmas season and Kurt was able to rest a lot and recover from his last round of Hyper-CVAD B. Kurt's hemoglobin was really low for a few days around December 28th and he developed petechiae (small red bruises) all over his arms and legs. Thankfully, he was able to get two units of blood! Because the clinic didn't have an available chair, he had to have the transfusion down the street at Good Samaritan Hospital. It took several hours and I ended up picking him up around 11:00 PM, as no visitor were allowed. It was a long day, but the new red blood cells really helped him to feel better! 

 On January 8th, Kurt's bone marrow biopsy unfortunately showed that he still had 0.03% MRD. While it wasn't what we had hoped for, we took encouragement from the fact that his numbers continued to fall. Kurt's oncologist decided that it was time to switch things up and move from more traditional chemo to immunotherapy. She decided that Kurt would do 1-2 cycles of a drug called Blincyto (Blinatumomab). This drug specifically targets the B-Cells in Kurt's body with the CD19 marker. We had been able to hear about other patients' experience with this drug and were encouraged. It has had great success at getting people MRD negative and keeping them there! We felt that God was using this situation to make sure Kurt was able to reap the benefits of this drug. 

On January 19th, Kurt was admitted to start Blincyto. The plan was that Kurt would spend the first four days in the hospital, so that doctors could monitor any reactions. If all went well, he would be discharged to finish the 28 day cycle at home with an infusion pump. Blincyto has a short half-life in the body, so it would need to be given 24-hours a day without pause. During the first 36 hours of treatment, Kurt experienced an immune response to the drug. This is expected but carefully monitored to make sure it doesn't get out of control. He ran a fever and felt like he had the flu. At one point, his blood pressure was a little low. Kurt was put on continuous monitoring and labs were also ran to make sure it wasn't an infection instead. After the 36 hour mark, the fever left and he started feeling great. 

On the first day we were at UK, the nurses noticed that Kurt's PICC line seemed pulled out too far. They did an x-ray to confirm. We were soon surprised to learn he would be getting a new PICC line that night. Because of the nature of Blincyto, it is only paused once a day for a couple of minutes for the bag to be changed. Since Kurt got his new PICC line a few hours after the medication was started, he had the joy of having two PICC lines in for a little under 24 hours. He told me he was a "you pick two!" The removal the next day was quick and easy. I think the thought of it coming out was worse than the actual process! 

Our insurance was slow in getting things approved for us to go home with the infusion pump. After many phone calls and time spent on hold, we were finally given the all clear to come home on January 28th. It ended up being a much longer stay than we thought! We were thankful that Kurt felt really well for the remainder of that stay. He was able to do some work in the hospital. We caught up on some movies and were able to go for walks each night after 8pm on his floor. 

Nothing is better than being at home! We have been able to enjoy time at home since the end of January. What a blessing to be home and to have Kurt feeling well. Because Blincyto doesn't destroy all the cells as chemo does, Kurt's hair and beard quickly began to grow back. His hemoglobin has continued to recover and was a whooping 14.5 this week! He has been able to work every day and has had some busy days working from home. The children have enjoyed these more "normal" days too. Homeschooling is going really well for us and I feel so pleased with all the ground we have been able to cover during such a crazy time. This week, we will start our 24th week of school! 

(Look at that beard!) 

(Finished Castle)

Kurt finished his round of Blincyto on February 16th. He claims the hardest part was carrying his fanny pack and trying not to get snagged on things! Blincyto is technically a 6-week treatment, even though the infusion is only 28 days. So, on March 1st Kurt had an other biopsy preformed. We received those results this week on March 10th. When Kurt's oncologist walked into the room, her first words were: "I have GREAT news!" Kurt is finally MRD Negative! We were both thrilled to hear that right now Kurt is Leukemia free. It was wonderful to hear those words but also sobering because we know that the biggest mountain is now right in front of us: transplant. Because Kurt's ALL took longer to reach MRD negative and because of the MYC 8 rearrangement that showed up in his initial diagnosis, we know his ALL is somewhat resistant and more prone to relapse. His best chance at a cure is through transplant. We know God can cure him and pray He is using transplant as the means to do it. 

Kurt's oncologist told us that they have activated his donor and sent him some dates to choose from for donation. We are currently waiting to hear back if one of those dates works or if there will be a little delay. We were told if we didn't get a phone call on Thursday that things would be progressing. No phone call came, but we are still holding our breath a little until we hear from his transplant coordinator on Monday. If transplant is on schedule, it will happen as early as 2-3 weeks. If there is a delay, Kurt will need to do an interim dose of chemo or Blincyto to prevent him from going too long without treatment. This would push transplant back. We are trusting God to work everything out for Kurt's good. 

Right now, Kurt will be repeating some of the testing that he already did to clear him for transplant. We don't expect any hiccups, but continue to pray he stays healthy. Before transplant, Kurt will also have an outpatient procedure to place a tri-fusion line in his chest to be used instead of the PICC line in his arm. Before receiving his stem cells, he will have 6 days of total body radiation and chemo to ablate his own bone marrow. Radiation will be 2x a day. It is a lot to take in. but we know God will help us and protect Kurt. After the 6 days of conditioning, on day 0, Kurt will receive new stem cells and a new journey will begin! 

Please continue to pray for Kurt: 

-for protection against illness or anything that would delay transplant 

-for strength, for him to pack on the pounds, and stamina to endure transplant 

-for protection against mucositis (mouth sores) during the first phase of transplant. We are told this is one of the most common and worst side-effects. Many patients have pain pumps and even feeding tubes for a period of time. This usually resolves once engraftment happens around day +10. 

-protection against GVHD (graft vs host disease) post transplant 

-protection against weight loss (he's always been a skinny guy--I'm trying to fatten him up!)

Please pray for his donor: 

-for protection against illness 

-for a smooth donation process and no side-effects 

-pray that God will use this process to reveal himself to the donor, if he isn't a believer 

Thank you for praying for our family and for journeying along side us! We are so blessed. Kurt has done so incredibly well with everything and I know that this just shows how God is taking care of Kurt and being so merciful to him. There's no other way to explain it! 

We look forward to sharing more concrete days regarding transplant soon. 

-Priscilla 

As we close out 2020...

     2020. I can imagine years from now the mention of this date will bring with it a sigh and a heart ache for most of us. As I was reflecting on this year and trying my best to do some sort of planning for what the next couple of months could bring, I thought about some of the odd milestones we are about to reach. March 2021 will be one year since I physically went into a store! January and February mark the last months of our "normal life." March 2021 also will bring the last time we were physically inside our church building as a family--how saddened my heart is over that thought. July was the last time we saw our BFG (small group) at church outdoors. July was the last time we saw most of our Johnson family, and even that was socially distanced and outdoors. 

    Birthdays in 2020 were celebrated at home with drive through visits and zoom gatherings. We spent the 4th of July visiting cousins but staying 6ft apart and outside to watch Kurt's annual fireworks display. And just when we thought maybe, just maybe, it might be safe to do a little bit more, Leukemia sent us down a new path to an even deeper isolation. Shortly after, COVID began to surge again as well. 

For me, 2020 has been a year filled with both grief and joy. From talking with other families who have faced a cancer diagnosis and from our own experience, we know there is a lot of grief to process with the initial diagnosis. We grieve our "old" way of life. We grieve the sweet innocence we never really knew we enjoyed--time without direct and specific concerns for the future that seem to mar even the most joyful of days. 

Having had my own battles with chronic illness, I know a smidge of what it is like to grieve the loss of a "healthy" body, a body that hasn't betrayed you or limited what you can do. I know of the trauma that can result from suffering and how it sticks with you. While I believe this knowledge is a good gift in that it will help me understand more of Kurt's battle with Leukemia and be more empathetic, it also brings me much sadness in knowing how terrible and lasting some war wounds from illness can be. 

One of the most difficult things this year has been watching the impact of COVID, isolation, and Kurt's illness on our children. Anxiety, loneliness, frustration, behavioral changes have had to be met and dealt with. Sometimes we didn't deal with them well either, as we were nursing our own heartaches. 

One day at a time...365 days...and we have kept marching forward with hope and through the grace of our Savior. And here we stand on the precipice of 2021, looking back and we can find blessings too numerous to list or count. I want to list some of the major ones here, so that I do not forget the goodness God has shown us. In the hardest of years, He has surrounded us with love and encouragement. He has shown Himself ever faithful. 

2020 is really all about perspective, so I choose to shift mine: 

-Back in January and February, Kurt had to travel to California and New Orleans for business. We are so thankful that he remained healthy. He was in California right before the March shut down for COVID! 

-In the early part of the year, I was dealing with a flare up of health issues. While I am still dealing with some of them, I saw great improvement throughout the year. 

-I am thankful for a wonderful doctor who always responds to emails, checks on me, and has the capability to do virtual and phone visits. I'm thankful we could see her in July and that she re-checked Kurt's blood work, sending us on a whirlwind trip to a diagnosis with Leukemia before he was very symptomatic. 

-When COVID first hit, I will admit I was anxious and fearful. I had a slew of health issues that made me more vulnerable and I wondered what would happen if I caught it. We were very strict about isolating, mask wearing, and social distancing. I prayed for wisdom and discernment. I didn't want to be too lax, but I didn't want to live in fear either. God granted me such peace. I firmly believe He gave me the push to keep practicing wisdom through proper precautions because He knew Leukemia was coming and that Kurt was so much more at risk than we knew (during the summer). 

-I am thankful our children celebrated their birthdays. We now have a 5, 9, and 12 year old! Each birthday showed our children just how much they are loved. Cards, phone calls, safe visits, gifts from teachers and friends all meant so much to them. Mabelle keeps a poster signed by her teacher and classmates in her room and still talks about it often. 

-Because my parents have a lot of property, we were able to enjoy and explore outside a great deal. We loved hiking to the waterfall and spending time with Mamaw and Papaw in ways we normally don't get to do with hectic schedules. They let us put up a pool at their house and we enjoyed many hours swimming. 

-We lost both of our dogs this year. I still miss them so much. Their presence was such a comfort in hard times. I am thankful that they both were able to pass peacefully at home with the help of a a wonderful vet from Lap of Love. When Mattie passed, God worked to allow me to be able to leave the hospital and come home for several hours. I was able to return with no issues. 

-I am thankful that we have the resources of two wonderful therapists. They have helped our family process this year and have given us support in special ways. 

-In July, we traveled to St. Louis to visit Kurt's family. We didn't know it then, but Leukemia cells were crowding out his healthy cells at a rapid rate. It was on the way home from this trip that we got the call to find a Hematologist/Oncologist asap. I am so thankful God protected us from illness during that trip and we got home safely. 

-The week of Kurt's diagnosis is a bit of a blur for us, but one thing that stands out is how our family and friends immediately jumped into action to help us. Our parents cared for our children during that long 35 day hospital stay. Our BFG quickly organized meals, GoFundMe, and other resources to support our family. We could not have survived that time without our community. 

-We got the phone call about Kurt's "terrible" blood work while we were driving home from STL. I think we were somewhere in Indiana. I had pulled the labs up on my phone. I didn't know what was wrong, but I knew enough to know it wasn't good. Our doctor called us shortly after I saw them. She told us to pull over. Kurt got out to talk with her. He was as steady as could be and took it all in stride. 15 minutes later I found myself leaping out of the van while we got gas to walk and have a panic attack alone. We messaged a few medical friends from church and within an hour had an appointment with a wonderful doctor on Monday. Again, God showed us He would make a way! 

-I am thankful God allowed Kurt a quick diagnosis with mild symptoms. He was very stable and strong physically when he was admitted the first time. I know that gave him a great starting point for a hard journey. 

-Kurt's parents have been able to help us so much these past five months. We are so thankful that God used such a horrible thing to give us so much time with his parents. The kids love all the grandma and grandpa time and it has been nice to have them here for longer and more frequent stays! They are so helpful with everything from household chores to installing new lights! 

-We are thankful for Kurt's team at UK. How amazing that we live in a city with such a wonderful research hospital downtown?! Kurt's doctors have proven to be extremely knowledgable and also extremely kind. We are thankful that they choose to serve others by doing what we know is such a demanding and hard job--physically and emotionally. 

-My BSF study this year is on Genesis. I have marveled again over God's creation and the last few weeks have focused on his mercy and love for Abraham. We feel as though we have set out on a journey far from the life we knew. Like Abraham, we don't know what is to come, but we know WHO to trust! 

-Our church hung the verse Hebrews 13:8 over the year. "Jesus Christ is the same yesterday, today, and forever." What a verse for 2020! Reminding ourselves of God's steadfastness has brought such comfort on dark days. 

I could go on and on (if you made it this far, wow!). 2020 has been a hard, ugly year in many ways. There's no way to sweep that under the rug and pretend everything is just great. However, I am thankful for a merciful God who does bring good out of the bad. I am thankful that He is forever steadfast, forever merciful, and forever loving. With hope in Him, I can face 2021 with a deep joy and an abiding peace. 

As one of my favorite songs by Sarah Groves says, "From this one place I can't see very far. In this one moment I am square in the dark. These are the things I will trust in my heart: You can see something else." Even though I have felt completely blind a lot of times this year, I find comfort in the fact that He can see something bigger, something beautiful, something else that I cannot. 

Do as the old song says, and count your blessing...

Wishing you peace and joy this New Year. 

-P

From This One Place--Sarah Groves

I was about to give up and that's no lie

Cardinal landed outside my window, threw his head back
Sang a song so beautiful, it made me cry
Took me back to a childhood tree, full of birds and dreams

From this one place I can't see very far
In this one moment I'm square in the dark
These are the things I will trust in my heart
You can see something else, something else

I don't know what's making me so afraid
Tiny cloud over my head, heavy and gray with a hint of dread
And I don't like to feel this way
Take me back to a window seat with clouds beneath my feet

From this one place I can't see very far
In this one moment I'm square in the dark
These are the things I will trust in my heart
You can see something else, something else

From this one place I can't see very far
In this one moment I'm square in the dark
These are the things I will trust in my heart
You can see something else

You can see, you can see
Something else, something else
You can see, you can see something else
You can see something else

He just threw back his head
(Take me back, take me back, take me back)
And sang a song, it was beautiful

(Take me back, take me back, take me back) 

Hyper CVAD B #2

 

We continue trucking along on this crazy journey. Kurt had his second Hyper CVAD A treatment in mid-November and is now inpatient at UK for his second Hyper CVAD B cycle. The A cycle went well with some nausea following it and a bit more fatigue than Kurt's experienced before. In true Kurt fashion, I was soon talking him out of climbing on ladders to hang lights and into taking more breaks from work or other activities he wanted to do. You can't keep a good man down! I am so thankful that he continues to rebound well from chemo. We watched as he grew some facial hair and laughed as it all fell out again in a 24 hour period! His hair is really keeping up the good fight and trying to gain some ground. 

On the 8th, Kurt saw his hematologist/oncologist for an appointment. Since there wasn't a biopsy after the last cycle, there wasn't much news to relay. We did get a chance to ask and have some more questions about transplant answered. Transplant is such a BIG thing--we always have new questions pop up and want to try to be as prepared for what it will be like as possible. Our plans are still the same regarding a timeline:

-If Kurt's next biopsy (probably around January 1st is MRD Negative (0 Leukemia cells)), he will proceed to the prep for transplant. This will include organ function testing and the placement of a Trifusion catheter to replace his PICC line. The Trifusion will provide three lumens for more access points than the two on his PICC and is a bit safer and less cumbersome than the PICC line. Placement does require mild sedation. He will most likely have the Trifusion in his chest until at least 100 days post transplant. 

-We were told that if he is cleared after the biopsy, it will probably be 2-3 weeks until transplant begins. Some of the timing depends on the donor. The donor's stem cells will need to be harvested and transported to UK before Kurt begins "conditioning." 

-"Conditioning" for transplant will be 5-7 days of intense chemo in the hospital counting down to "Day 0" when Kurt will receive his new stem cells. The purpose of this part of the regiment is to obliterate Kurt's own bone marrow to make room for the new stem cells. He will have intense chemo and radiation. Current chemo simply is enough to kill the Leukemia but allows the bone marrow to continue functioning. "Conditioning Chemo" will be so strong it will permanently damage Kurt's bone marrow to the point it can no longer work properly, allowing the new stem cells to engraft and take over. 

-During transplant, we expected to be in the hospital for 4-6 weeks. Engraftment generally starts to take place around day 10. Kurt will probably experience some degree of of Graft vs. Host Disease (where his new stem cells attack his body). This usually manifests in skin, mouth, and gut issues. Some degree of GVHD post transplant is a good thing as it creates a "Graft vs. Leukemia" effect where the new cells fight any remaining Leukemia cells! However, we don't want GVHD to get out of control and actually cause harm to Kurt's body either. It's something that is carefully watched, especially during the first tenuous weeks. 

-For the first 100 days after transplant, Kurt will be on immunosuppressant drugs. If all goes well, on day 100, he can begin weaning off of those drugs, giving his new immune system a chance to really start to work and defend against germs! We will have to continue to be extremely careful during that first 100 day period of his recovery. For the first year after transplant, Kurt's immune system will still be like that of a newborn baby. We will have to be careful, especially with the COVID situation but we look forward to this healing process and getting closer to see those we love in person! 

-If Kurt is not at 0 after this next biopsy, the plan is to do a round of the drug Blincyto for 28 days. Blincyto is not a chemo drug. It is a pre-programmed antibody that binds to certain markers on the Leukemia cells and destroys them. It is a revolutionary drug that we have heard great things about, getting many patients to 0 for transplant. For this medication, Kurt would do 7 days inpatient to make sure there are no reactions or side effects and then come home with a pump that would administer the drug 24-7 for the reminder of the 28 day period. We would then do another biopsy and proceed with transplant at that time. 

-The great news is that there have been many donors identified for Kurt. Praise God! His doctor will choose the best fit for Kurt based on HLA typing. Male donors are preferable because many women who have given birth have additional antigens from their children. They also like to match blood type when possible. The more ways Kurt and his donor can be compatible reduces his risk for severe or chronic GVHD. 

During this whole process Kurt has also been receiving spinal chemo through lumbar punctures (similar to an epidural). To administer the spinal chemo, a small amount of CSF is taken out to "make room" for the chemo (because the CSF system is a closed system, some must come out before more can go in). This allows the doctors to test the CSF for Leukemia cells. ALL is a tricky cancer and is prone to relapse in the CSF. We are so thankful that Kurt's CSF has remained clear of any Leukemia cells. His doctors had a goal for him to have at least have 8 spinal chemo treatments and Kurt completed his 9th Lumbar Puncture on Thursday. He will have one more, for a total of 10, on Monday. This should be the last one! He had some pain from scar tissue with the previous two LPs, but God showed mercy and answered our prays on Thursday. There was no pain! 

If all goes well and Kurt clears the Methotrexate from his body, we should head home on Monday. I am so thankful that I am able to be with Kurt during this round of chemo. COVID restrictions at the hospital are tight, but we are so grateful that they are still allowing one visitor per patient on the Markey floor. We have also been able to walk the halls from 8-11PM. I think Kurt really enjoys getting out (I can go down for food, so I usually get one walk in a day to pick up dinner). We wear our eye shields and masks and get a little exercise. Tonight, we counted 8 doors labeled "BMT." 8 people going through the incredibly scary and taxing process of a transplant. Please pray for those 8 patients, especially as we know this is a lonely season for many of them. 

Thank you for continuing to support us in prayer and through your generous gifts and service to our family. We can never express how grateful we are: meals dropped off, cleaning supplies, toilet paper, treats, gift cards, even help for Grandma and Grandpa when van battery died! We are so loved and so thankful for our families and our friends. We will continue to update you as we draw closer to transplant and we are praying that God will provide full healing and a cure for Kurt through this miraculous process. 

With much love, 

K and P