Friday, October 23, 2020

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. 

Thursday, October 22, 2020

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



Monday, October 5, 2020

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.