And the Last Chemo Date is…

March 25, 2019.

Justin will receive his last infusion of chemotherapy on this day.

We are planning an open house-type celebration at a local park this Spring. More details on this to come…

We are coming up on a MAJOR hurdle but this is not, in fact, the finish line. As of the end of March, Justin will no longer receive treatment, but he will still be seen in clinic every month for a physical exam and CBC. The following year, fifth and final, we will make the trip to clinic once every other month. Medical exams, heart monitoring and needle sticks will still very much be a part of his life until Justin is declared completely cancer-free.

Justin must remain in remission for a total of five years to be considered cured.

We are staying ever-positive and hopeful, but, of course, without the regular infusions of cancer-suppressing drugs, concern over relapse becomes far greater.

I am elated and I am terrified. Our hope is in the Lord.

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On Fiction and Forgiveness

Been thinking a lot about this lately. Not really sure why, but it prompted me to resurrect this fictional story I wrote a few years ago. Thinking about how Jesus was able to forgive, even those who put him on a cross, moves my heart attitude to a really good, grateful  place. Maybe it will for you, too. Please keep in mind this is historical fiction, a mere creation from my mind based on true events. But. I believe it is possible that events similar to this one may have actually occurred…

The Roman Soldier’s Wife (March 31, 2015)

It was evening when my husband came through the door. His face was not contorted with vexation, as was his usual greeting, but set in a weary, bewildered expression. His tunic and leather lappets were spattered considerably with blood.

I knew as much to quickly hush the children and hustle them into the back room. I kissed them good night and told them to lie very still.

Hurriedly, I began to prepare a meal for my husband. Wearing only a loincloth, he was sitting with his head in his hands. My eye caught sight of bloody clothes on the floor as I brought the wine and food.

I stood beside him ready to serve. He drank the wine but did not eat. He grunted at me, and I poured more wine. He gulped it quickly and, again, motioned for more. Staggering a bit, he disappeared into the other room. I did not move until I heard him breathing loudly. Then I cleaned up his untouched meal and shuddered as I got to work on the bloody clothes.

As I scrubbed vigorously, blood ran from the wool tunic over my fingers and down into the pail of water. I was no stranger to what my husband did as a soldier and I knew very well of what he was capable at home. I thought about what I had heard earlier that day while I was out in the court washing clothes with the other women. The Jews wanted to kill a man who claimed he was the Son of God, but Pontius Pilate said he couldn’t find any fault in him.

My thoughts were interrupted as my husband called out. I jumped and my heart was momentarily gripped in fear. I dreaded going to him but I knew it was better than him looking for me. When I reached the room, he was asleep, drenched in sweat, his face twisted in anguish. I waited. He called out again. His words were unintelligible, but he seemed to be calling for help.

I returned to my work and my thoughts. Could this be the blood of the Jewish man who claimed to be the Son of God? Had my husband assisted in putting him to death? I listened to him call out in his sleep again and wondered what it was that tormented him. My friends, in the court, today had also said that Pontius Pilate offered Barabbas, a murderer, and the Jewish man, Jesus, to the mercy of the crowd; one would be released and the other crucified. The Jews had chosen Barabbas to be released and Jesus to be crucified!

I was sitting on the floor by the window as I worked. The moon illuminated crimson stains on my husband’s leather lappets. Dipping a rag into the pail of water, I tried to wipe them clean. I had seen men hanging from crosses along the road and, always, I shielded my eyes. I felt a tug in my heart for this man, Jesus, who suffered the horrible fate of the cross and, it seemed to me, all very unfair. Tears ran down my face as I pondered it all.

I suddenly wished I had met this Jesus whose blood was, perhaps, on my fingers, now splashed on my tunic and still on my husband’s lappets. Not managing to get anything clean, I sat idle among the bloodstained clothes, crying softly, face turned toward the moonlight.

Lost in thought, I hadn’t noticed the figure looming over me. He took a step forward. Startled, I retreated into the corner and pulled my legs against my chest. I waited for the insults to come but there was only silence. I dared to look up. My husband’s eyes were wild, but not with rage and fury. He appeared like something I had never seen before. On his massive, muscular frame, that had struck fear in the heart of many, was the face of a helpless child.

Falling to his knees, my husband gently touched the bloody lappets that were lying abandoned on the floor. Then he looked into my eyes and spoke. He said that he had, indeed, participated in crucifying a man called Jesus. He spoke of the beating, scourging, mocking. His voice broke when he told of how they spat upon him. He said that through it all, Jesus never opened his mouth in defense or retribution.

His voice faltered again when he spoke of Jesus calling out to his Father, asking Him to forgive the very ones who had nailed him to a cross. Weighted by grief and laden with regret, my husband’s words seemed to pelt me like a rainstorm made of lead droplets.

My husband went on to say that all night he had dreamed of Jesus. He saw the blood, the nails, and the pain-filled, sad eyes of Jesus. He saw Jesus helpless and dying on the cross. But, still, in the dream, it was he who needed help and felt the need to call out for it repeatedly.

I listened in amazement. This hardened, cruel man, who, on more than one occasion, laughed as he recounted the torture of another at his own hands, was exposing emotions I didn’t think existed. This same man, who considered me a slave rather than his wife, was speaking to me as an equal and making eye contact for the very first time.

Something had changed. Something impossible now seemed not entirely too far from my grasp. Could there be life outside of constant fear and suffering? Was it possible for me to be truly loved? Could I forgive my husband? Again, I felt a tug in my heart towards this Jesus, a man I had never seen nor met.

My husband moved toward me and I, instinctively, shrank backward. Understanding the movement, he buried his face in my hair and, folding his huge body against the wall, he began to weep. Over and over, he repeated, me paenitet. Mpaenitet. Mpaenitet. 

“I’m sorry.”

I felt waves of joyous shock emanating through me at this apparent softening occurring in my husband’s heart. Then my mind suddenly returned to the afternoon. While the other women and I were in the court doing wash as the children played, the sky had unexpectedly become very dark and the ground shook violently. Grabbing our children by their hands, we had left the wash and ran inside, terrified.

A thought that seemed to enter my mind instead of being formed by it made my heart seize then push hard against bone and flesh.

I put my arms around my husband’s trembling body. A sudden peace replaced the pounding in my heart as I understood truth. Just as dawn was approaching and first light streaming in, I lifted my husband’s face to mine and looked into his tear-filled eyes. I said one thing before we drifted off to sleep, together, on the floor as the sun was rising.

“Truly, Jesus was the Son of God.”

Stay With It One More Day

If you haven’t guessed by now, I can tell you I have an active imagination. One of my college professors referred to it as “rich” in reference to an essay or something we were assigned.

So this is one of my recurring musings. I am driving home from the grocery store. But instead of turning, I drive past my street. I keep driving all the way to the airport. Leaving bags of groceries to their own demise and with only my purse and the clothes I’m wearing, I purchase a ticket for the next flight to Phoenix. I probably also buy a donut or cheeseburger. Maybe both.

Upon arrival in Phoenix, I take cab. “Where to?” the driver says. “Grand Canyon, please.” Now don’t worry. I’m not planning to jump in or anything. That’s not where this is going. It’s just that this giant, massive hole has always fascinated me, and I have yet to see it in person.

That’s it. I get there and stare at it for a while. Then what? I don’t know. I guess I go home and deal with the melted ice cream and chicken cutlets rotting away in our mini-van. I suppose it’s really a very anti-climactic fantasy.

I write from the desk in Nicky’s bedroom because it’s currently the only place I can get a moment’s peace. I left the kitchen table because the piles of laundry, broken kitchen sink, sunburned kids watching cartoons and drugged-out-cone-wearing-freshly-neutered dog laying on the floor staring holes through me was too disarming.

But, eventually, I have to go back downstairs and deal with it all. I also have to deal with Justin’s meds and physical therapy and home-schooling.

Who wouldn’t fantasize about running away? Being a parent is the most sacrificial, mind-numbing, thankless job in history. Yes, of course, there are amazing moments, too. But I don’t sugar coat the drudgery. Add a chronically ill child with special needs? Your mind starts to think the Grand Canyon is calling to you.

It’s not only me. I know you have problems. You sometimes write to me about them, and I am thrilled there is someone out there who gets it. How does one manage? Well, of course, you know my faith is the main sustaining motivator.

But I also say this to myself. Just stay with it one more day, Katie. And then I’ll say that again tomorrow and the next day and the next.

Just stay with it one more day, my friends. And lean into grace with every ounce of the weight you carry.

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A very special thank you to Joyce and the Kisses for Kyle foundation for this family photo taken recently at one of my favorite places, Ocean City, NJ.  

Upcoming Surgery and The Perseverance Thing

shady-forestAfter a year, it’s time to remove Justin’s central chest line. Switching to IV’s in the hand when in clinic. Ouch, I know. Somehow we think it still beats repeated stabbings and large bandage adhesive removal on a sensitive skin chest area.

Conversations with mom and role play with an IV needle and a pin cushion “hand” with the child life specialist. He’s apprehensive but prepared.

Justin will have the surgery as well as a spinal tap this Wednesday morning. We are scheduled to meet with the surgeon this afternoon. Pre-op checklist: nurse informs me this can be a very uncomfortable procedure because body tissue has adhered itself to the central line. In the same breath, she says this particular surgeon doesn’t like to give pain medication. He thinks Tylenol is just fine. WE WILL JUST SEE ABOUT THAT.

We love to receive homemade cards if you have a moment and feel so inclined. Justin will be recovering later this week and I know funny pictures and encouraging words will lift his spirits. I believe a positive attitude and outlook can aid in healing and recovery, which is why we schedule FUN and LAUGHS and PRAYER and SCRIPTURE.

But the body can also be a downright funny thing. Feeling entirely calm in spirit, but I’m broken out teenager face and way too many thoughts about Amish buffet fried chicken.

Teaching Sunday School yesterday. The test of Abraham. One of my more interested, pensive students asks if we are “still tested today, like, could WE get a test?” Yes, my dear thoughtful one, and DON’T I KNOW IT.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything…Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. James 1:2-4, 12

Well I’m NOT doing cartwheels over here, but I AM now pretty good at the perseverance thing. Grace be with you, my friends.