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

Trees

Trees

(a work in progress..) 

    The day you were diagnosed with Leukemia, the weather was full into one of those humid August days in Kentucky. While the doctor spoke to us, I remember watching the trees outside the large windows of the exam room. Our room overlooked a little stone courtyard, empty except for one woman who walked in circles talking on her cell phone for ten minutes and then disappeared. The trees were tall, spindly things with curling bark. A few yellowed leaves had dropped from the branches and scuttled along the grey cement riding the hot breeze. The trees were tall enough and full enough to create a little canopy above the courtyard. The sunlight cut through the leaves making a dappled pattern on the ground. The room in which we sat was icy cold, and I shivered, goosebumps creeping up my arms, each hair standing on alert for some sudden attack. I checked my heart rate on my Apple watch. I saw it climb, sit steady, and then slowly fall. I watched the trees and tried to breathe. Every particle of my body longed to fling myself out the window and into their arms. 

    It was to the trees I often ran as a child when the world was weighty, my heart claustrophobic in my chest. Our yard, a country yard where the yard only stopped at the edge of as far as my dad was willing to mow, contained so many trees I loved: the large dogwood with the perfect branches for sitting and climbing and the huge stately pine where I got my fingers sticky from the sap and made beds of pine needles or woodland “soup.” There was a dip in our yard surrounded on either side by much smaller trees that created a ceiling above--my own Lover’s Lane, and the exotic Mimosa, whose wild perfume and pink blossoms transported me farway during the summer. There was the dark trunk of the cherry tree and the tart cherries I had to race the birds for and the apple trees that produced the most sour green apples as the seasons hastened toward Fall. 

    I loved each of them like a little dryad. It was to the trees I would run to play, having no brothers and sisters of my own. I would lose myself in the world of fairies, King Arthur and Anne. On foggy, rainy days, the rolling land became Dartmoor and I, a female Sherlock Holmes. It was to my dogwood tree that I ran to sit, cradled in its branches to write stories of my own. 

    At Christmastime, my dad created magic in the trees with large, brightly colored bulbs. He would string them through the branches of my dogwood tree until it looked like the glittering top of a carousel. I loved to sit inside our room with the bay window that overlooked the dogwood tree and watch the lights and snow at dusk. When allowed, I would bundle up and sit in the dogwood tree surrounded by the glow of the lights, December air stinging my cheeks. I remember the feel of the warm bulbs in my mittened hands--the primary colors with chipped paint, how their minuscule warmth competed with the whipping breeze. 

    As I grew, my trees grew with me and I found new friends: the tall trees standing like centuries over the picnic tables at the camp I loved. The tree outside Cherry Hall at Western Kentucky University that turned the most brilliant shade of yellow I had ever seen each Fall, such a brilliant yellow that it made my heart ache in the strangest way, the Bradford Pear trees at the first house we owned together and their white blooms covered in a late spring snow--how I cried the day the electric company cut them down without warning. 

    There is a tree that stands alone on a hill on our family farm. It overlooks the pond my dad built many years ago, where his cattle now drink. Everyone in my family knows that as my tree. I don’t know why I love it, for I haven’t spent hours sheltered under its branches as I did the trees of my childhood, but something about it’s strength and beauty draws me to it. It leans slightly to one side but stands resolute. I photograph it, trying to catch each angle but none of the pictures I take conveys the smallness I feel as I stand at a distance and admire it. There in that smallness I find a kind of comfort that cools the burning in my heart for a few moments. It is here and yet not here and makes me now think of the tree Niggle worked to paint in Tolkien’s short story that I want to read over and over as I struggle with my own words and thoughts and the difficulty of the craft of capturing them. 

    I remember the trees that lined the winter walk to our wedding reception--the forest was so quiet that only the sound of a stream could be heard running under our feet. I was not cold on that January day, as your hand warmed mine. I remember the trees in our yard that calmed our babies as they cried from colic and how they would blink their dark eyes open at the trees above, suddenly silenced by the change of the air and feel of the breeze. My heart again pained by a queer ache of knowing and understanding the souce of their comfort. 

    I love the trees that line the edge of the farm near my parents home, the sudden transition from mown grass to woodland mystery. The trees that shelter two small graves of my best companions. I think about the wind ruffling white fur, the dart of a squirrel up a tree, and the tumult of barking and paws. I think of the day the orange earth swallowed the tiny white body curled so perfectly at peace, and the mad urge I had to run, scream, rescue him from the cold ground--how I just stood against that urge and watched, wept, and crept silently back to the house. 

    And so, the day the world tilted on its axis in such a sharp way, the day I had to work to coax each breath in and out of my body, the trees helped me again. Stand in the wind, bend with the breeze, they whispered. You will bend, you will not break, though your leaves yellow and fall. There is magic in the death of winter. Look for it. Be on the lookout for it. It will find you in the safety of the branches and in spring time, you will be reborn. 

Hyper CVAD B: Day +1

(Kurt getting spinal chemo 10/21-Kurt has not had any leukemia cells in his CNS. These treatments are preventative, as the leukemia can migrate into those areas.)

After 14 great days at home, we are back at UK for Hyper CVAD B Cycle. The best part about this cycle is that we should be back home after 5 days! We already are looking forward to being back in our own bed after the first night inpatient, but we know this time will be a little different for us at home too. Kurt has normally spent his "feel bad period" in the hospital, so he will be at home for that this time. We pray he won't feel terrible, that the meds we have to treat nausea and other symptoms will work wonderfully, that he can rest well at home, and his counts will recover quickly again. I am praying I can juggle taking care of Kurt with things at home too. Homeschool provides some really great structure to our day, but it is very hard for me to "let it go" if other needs arise. 

Since I haven't give an update in a bit, I'll back up and do that now: 

We came home from Hyper CVAD A cycle on 10/8 after a 16 day stay. We were so excited that we got to leave earlier than we originally thought! Kurt's counts were recovering really well, so we were able to be released to come home. There was some talk of going straight into Hyper CVAD B, but his platelet counts were a little low, so we got to escape home for some rest before biopsy and the next cycle. 

On 10/13, Kurt had his bone marrow biopsy at the clinic. I got to watch this one! Kurt is such a trooper through all of these procedures. He has never complained about any of them. The PA who did this biopsy was amazingly quick. Kurt said it was probably the best one yet. On Friday (10/16), we went back in to the clinic to meet with Dr. Ramlal and discuss the results. We had been told that Kurt may not be in remission after just one cycle and that proved to be the case. He has 7% of blast cells still present in the marrow. 

Timeline: 

Admission: 95% blast cells in the marrow 

Post Induction: 15-20% blast cells in the marrow 

Post Hyper CVAD A: 7% blast cells in the marrow 

The good news is that the blast count continues to decrease. The bad news is that it is resistant to chemo because of the MYC8 rearrangement. Less than 5% blasts in the marrow is usually the threshold for remission, but we are shooting for 0 blast cells as we head into transplant. Dr. Ramlal explained that the plan forward is to complete the Hyper CVAD B cycle and do another biopsy on 11/6. Hyper CVAD B contains chemo drugs that Kurt's leukemia cells have never seen before. The hope is that these drugs will do the job and clean up this remaining bit of bad cells. If the blast cells are not decreased, we will add the drug Blinatumomab to the next two cycles. We have heard great things about this drug. It targets a specific antibody on the cancer cells and has gotten many people into a very strong remission with 0% minimal residual disease (MDR). We want to go into transplant with 0 blast cells to give Kurt the best shot at a cure! Kurt also still has another Hyper CVAD A/B cycle to go, plus chemo for conditioning prior to transplant, so more chances to kill the leukemia and keep it gone.

We are still targeting December/January for transplant. All four of Kurt's siblings completed the bloodwork to see if they are a match for him. Those results started coming back while we were home and unfortunately all four siblings are only a half match. When looking for a stem cell match, doctors are looking at HLA markers on the cells. A perfect match has 10/10 of the same markers. Kurt's siblings only had 5/10 markers matching. The more perfect the match, the less chance of his body rejecting the cells and there is a slightly lower risk of Graft vs. Host Disease (GVHD). Now, we begin the search through the national registry (Be The Match). They even sent Kurt a little informational packet earlier in the week. There are around 30 million donors in the registry and Dr. Ramlal seems really confident Kurt will find a match there. We are praying we find a perfect match as quickly as possible. 

Several people have asked how they can get tested to see if they are a match. The best way to get tested is to go through Be the Match. You can go online and request a testing kit through them. If you are between 18-45, the whole process is free. The kit is a simple mouth swab that you do at home and mail back. If your DNA seems to be a match for a patient needing a transplant, you would then have some additional bloodwork for HLA typing. If you are registered with Be the Match, then you are a candidate for Kurt and many others in need! Donation is usually very similar to donating plasma--not a surgical procedure. You can read more about donating here: Be The Match  

So, we returned to UK yesterday for the start of Hyper CVAD B. Kurt had some pre-meds and fluids to prep for chemo today. He also had a spinal chemo treatment yesterday. Because of the issue with the headache he had last cycle, they did add steroids to the spinal chemo. We hope this will prevent headaches and help lessen inflammation. I snapped the picture above just to document how strong he is! Kurt has always hated needles, but he has done so well with all of the pokes. The oncologist who did the lumbar puncture yesterday is a big STL Cardinals fan, so he and Kurt had fun talking about baseball. I think that was a pleasant distraction. Kurt made sure to wear the Cardinals hat his mom made him because he knew Dr. Krem would notice! 

This morning, Kurt started receiving chemo around 9:30am. He will have methotrexate over the next 24 hours via his PICC line. The next three days, he will get doses of Cytarabine and a couple of other drugs to prevent and lessen the side effects of the chemo drugs. Kurt has had methotrexate and cytarabine in the lumbar punctures, but he has never had them via his PICC line. We pray they will do the job of destroying the remaining 7% blast cells. 

As long as Kurt's body clears the methotrexate, we will be able to return home on Sunday! So far, he has tolerated each chemo drug we have encountered really well. We pray he will do the same with these drugs. Typical side effects are fatigue, nausea, and vomiting a couple of days after chemo. Kurt does have some neuropathy that has gotten a little worse from one of the other chemo drugs (vincristine), but we have been told it will go away after treatment. One of his worst days was actually the day we were discharged from the last cycle (10/8), when he had bone pain from the Neupogen injections to help boost his WBCs. He will have this drug or a similar one post-chemo this time, so we pray the bone pain will either not show up or will be as minimal as possible. Thankfully, it went away pretty quickly after the last injection. 

Thank you for reading this crazy-long update and for praying with us! If you would like more information about stem cell donation, feel free to message me. As always, information about our meal train, etc are located on the right side of this page. We could not do this without your support! We are so thankful for all the meals, the household items, goodies to keep the kids busy, cards, texts, and words of encouragement. Your prayers mean the most to us and fill us with such joy and hope! You are a blessing to us! 

-K and P

Hyper CVAD-A, Day #13

 

Hyper CVAD-A, Day #13 

We are over half-way through this next cycle of chemo. Best of all, the chemo part is finished! Because of Kurt's residual disease on the last bone marrow biopsy, this is basically "Induction #2." The goal is still to get him into remission and to keep him there. The end goal is now stem-cell transplant after three more Hyper CVAD cycles. For this first cycle, much like the last induction, patients typically remain inpatient for the entire duration of the treatment. For Hyper-CVAD cycles that cycle is usually 21 days. We remain hopeful that if Kurt's counts recover quickly, they may be generous and let him go home early, but we aren't holding our breath! 

With this cycle of chemo, the bulk of the treatment was administered the first 4 days. On day #11, he had a final treatment of vincristine and started another 4-day round of steroids. Now, it's just a waiting game for his counts to recover enough to have the next biopsy. Right now, his neutrophils (those beautiful infection fighting cells) are 0. We need them to come up to around 500 for biopsy and discharge. It's great that the cell counts drop--that means chemo is working! Now, we just need them to rebound. In order to help his counts come up, he is receiving a daily injection to help boost cell production. 

This cycle of chemo was a little bit more rough than the first (as anticipated), but Kurt has really handled things so well. Big challenges this cycle have been a headache that is more positional in nature and some mild nausea/vomiting. The mystery headache has had everyone scratching their heads. It worsens when Kurt is sitting upright, but completely disappears when he is laying flat. The most likely cause is the spinal chemo. Spinal injections are notorious for headaches and chemo in that area can cause irritation and inflammation. However, being the tricky patient that he is, Kurt's headache didn't begin until almost 48 hours after the spinal injection, so we can't be sure that is the cause. He had some fluid on his ears, which has been treated with antibiotics, and has almost felt as though it was muscular in his neck too. Thankfully, his CT scan was perfectly clear and the headache seems to be growing less prevalent each day. In the future, the oncologists will administer some steroids with the spinal chemo to see if it will prevent this from happening. Massage therapy might also be stopping by. What a treat! 

Last week, Kurt also had some nausea and vomiting one afternoon. I had gone down to try to meet a Door Dasher (our food was lost and never arrived--which Kurt said was God clearly knowing he wasn't going to be able to eat it!). I called up to the room to let him know and he told me he wasn't feeling well. By the time I got to the floor and rounded the corner, I could hear him. The nurses were talking--"Oh, that's Mr. Johnson." If you have ever been lucky enough to be around me when I have complained about Kurt's noisy vomiting, you'll know he could be heard clearly in the hall. We often have joked that he almost yells when he vomits. This loud vomiting trait seems to be hereditary, as Kurt's dad and brothers also demonstrate this wonderful quality. Shortly after we were married, Kurt got food poisoning during a trip to Seattle and I heard him vomit for the first time. Needless to say, I stood outside the bathroom door crying and asking if I should call 9-1-1. Now, I know what's up and quickly let the nurses know, "he's a loud puke-er." They agreed! Thankfully, it seems to have been brought on by an empty tummy (he napped through lunch after the spinal chemo that day) and, after a dose of meds, went on to eat a full dinner and has felt fine since. He joked about how loud he was and took it all in stride. "Welp, chemo is working" was one of his first sentiments. 

It's so hard to be stuck in the hospital, watching the cars on the street below, students walking to class, seeing the football stadium fill (only to 25%) and empty...life going on outside of these walls. We can find joy in the stillness of it all though. I am thankful for this time together. It isn't what we would choose, but we have been able to laugh until we've cried at each other's silliness, watch movies together, have long conversations, laugh at the past, and plan for the future in the face of this huge mountain before us. We have a deep hope and a joy that cannot be disturbed by the ripples on the top of the water. I am not making light of what we are going through by any means. Some days are really hard--seeing our kids over Facetime with anxious faces, worn out eyes, missing them and "normal" days. We are grieving life that was, life without the word Leukemia in it. We are missing our sweet dogs we lost this year. We are trying to process this whirlwind diagnosis that literally turned things upside down overnight. While we laughed later over Kurt's loud vomiting, I stood outside his bathroom door, fist on the wall, crying over the suffering, heartsick for him. And yet, we find God with us in the midst of all this. We hear His gentle whispers. We see Him working for us, using the hands and feet of others to hold us up. I feel like Moses in desert when Aaron and Hur held up his hands. We are thankful for those holding up our hands during this battle. We couldn't do this alone. 

Carry the Fire

 Sometimes we just don't get the answers we were wanting, but that doesn't mean God has left us for one moment or that He isn't working to bring about healing in a way we didn't expect. 

Kurt had his followup appointment to go over the results of the biopsy on day 29 of induction. Unfortunately, there was some residual residual leukemia in the bone marrow. The more interesting information regarding the biopsy was that the oncologist realized that these cancer cells have a "rearrangement" called MYC 8. This is a translocation within the cancer cells that can make them more aggressive and more prone to relapse. We didn't see this initially because it takes some super sensitive testing to look for it. The good thing is that the first biopsy to show the MYC 8 noted 12.5% and that number dropped to 1% with treatment. It did respond to chemo, but more is needed. Because of the presence of MYC, the course of Kurt's treatment will be pretty altered from what we thought. Instead of three years of chemo, attempting to avoid a transplant. He will now be on a transplant track. 

Next Wednesday, Kurt will be admitted to start what will be 4 rounds of different and a bit more intense chemo called Hyper CVAD. The cycles of chemo are classified into A and B. We were told the B cycles are "harder" than the A. For the first cycle, Kurt will need to remain inpatient for 14-21 days. They need to see how he reacts to the new drugs and monitor him more closely. His discharge date will depend on how quickly his counts recover (a quicker recovery means discharge closer to 14 days). They will also be be able to give him medicines to help his counts recover with these chemo cycles. For the remaining 3 cycles, he will probably be inpatient for 5(ish) days and then home through the treatment and recovery. Of course, hospital stays and being able to remain home depend on a lot of things, but we are praying he can be home as much as possible! The cycles will progress A, B, A, B. 

The goal of the Hyper CVAD is to get him into remission. The oncologist said she expects him to be in remission after two rounds...possibly after the first. There are also other drugs specific to B-Cell ALL they can use to get remission too, if these were to fail. As of now, Kurt won't be participating in the drug trial but the good news is that the drug in the study (inotuzumab) is something he can still take if needed. 

Following the 4 cycles of Hyper CVAD, Kurt will move forward with a stem cell transplant. We don't know much details about this, as the transplant coordinator will meet with us next week. Thankfully, he has 4 amazing siblings who will go through the process to find out of they are a match. His best chances at a match come from siblings! They told us usually 1 out of 4 siblings are a great match, so we are praying one of them will be as perfect of a match as we could dream of! We don't have a firm timeline, but the oncologist mentioned the possibility of transplant around December/January. 

So many things change quickly, so I am sure some of this could be revised in the future. We are still processing all this information and still have a lot of research and learning to do. It isn't what we wanted or expected to hear, but we are trusting that God is leading us down this path for a purpose. We believe that purpose is healing. I was so encouraged when I read the story of another B-Cell ALL patient who had a transplant at 41 and is now 71 years old! There are lots of risks with transplant and it certainly is the "scarier" thing we had hoped to avoid, but it also affords a chance at a cure.  

The coming days are going to be stressful and long. We will be in for an intense phase of treatment and transplant until the beginning of 2021, but we know God will carry us through. One of the first things I thought was that we have so much help! Friends and family have seen us through this first phase, and we know we will continue to have that support going forward. We are so very thankful! I can't even express the joy that springs up in my heart when I think about each gesture of love. 

Please continue to pray for Kurt. Pray that the treatments will work perfectly and that he will achieve the highest degree of remission. Please pray for his body, as he endures the treatments, and that he will retain his joy that has been unquenchable so far. Pray that we can find a perfect match for the transplant and that all will go smoothly in preparation for that process. Continue to pray for our children: each has dealt with anxiety and grief in different ways, but it as been especially hard for Hazel. Please pray that my own chronic health issues will remain in control and that I can be there to help and support Kurt. Pray we fix our eyes on Jesus and continue to trust Him. He has made a way for us so many times when there seemed to be no way--from adoption, to my own health issues, to Leukemia and we know He will continue to do so. 

One song that I have had on repeat during this time is Andrew Peterson's "Carry the Fire." One section of the lyrics say, 

I will hold your hand love

As long as I can, love

Though the powers rise against us
Though your fears assail you
And your body may fail you
There's a fire that burns within us

And we dream in the night
Of a city descending
With the sun in the center
And a peace unending

I will carry the fire for you

https://youtu.be/hahX10ofNYY

We will continue to carry the fire, trusting in Christ and His Kingdom--trusting in Him for earthly healing from Leukemia. 

Ways to help...

     Several people have asked for ways to help our family during Kurt's Leukemia treatment. Since I know there are several people who read the blog and are not on Facebook, I wanted to share that information here. 

If you are on Facebook, our small group has created a Facebook group called, "Ministry to Serve Johnson Family (Kurt and Priscilla). https://www.facebook.com/groups/669261783799732

In that group the following ways to help have been created/shared: 

Amazon Wish List for household needs and encouragement for the children:

https://www.amazon.com/hz/wishlist/ls/8VIHTFQSIF2G?ref_=wl_share&fbclid=IwAR0K9J8DO98xpORZY4cu1WTF4NhMHsxV1apZH-21ANMDpEKpFRIEDQSTpi0

Meal Train Signup: 

https://www.mealtrain.com/trains/mnv61l?fbclid=IwAR29ZMtESA9Gr2py--2GhgV3SULTXEZ7ohjitqipG9DQKcUf1r6srX9asVM

Sign up for ministry to the children: 

https://www.signupgenius.com/go/20f0d45abaf28a4f49-johnson

Go Fund Me for Medical Expenses: 

https://www.gofundme.com/f/xu5g5-kicking-cancer-where-it-hurts?utm_medium=sms&utm_source=product&utm_campaign=p_susi-sms-welcome&fbclid=IwAR0hkcV6oRqJGkwGWCwg2v2he5q7AL76icrHGungN0zQONBuDxeHI_KSpjw

Friends and family have been such a blessing to us! Mabelle told me recently, "So many people must love us and want to cheer us up while Dad is getting better." We have felt so loved. Above all, we appreciate your prayers most of all. Thank you for supporting us during these difficult days.