To Live Through It

To live as a parent of a child, formally a blood cancer patient. What does it mean to live through it?
Long after the last drop of your child’s blood is medically deemed unpolluted with an alarming number of mutated leukocytes, fear still lives in you like a latent virus infecting your own cells. Dormant. Inactive at times. But, still, it is alive. You almost forget it is there, until, what otherwise might be a minor event or innocuous comment, somehow inflames panic.
The fear virus.

The fear virus flares up like a raging case of dermatitis. You feel the painful swelling and annoying itch, yet must carry on with your duties. But you know it’s not your best work. You attempt to cover the defenseless, raw blemishes. But you know others can still see them. You lament the discomfort; the whole sleepless, joyless, listless ordeal.

You apply ointments and balms, oils and antiseptics. But nothing works. You just have to let it run it’s course.

All you can really do is wait for it to pass.

Likewise, you wait for the fear virus to pass. You pray and you wait and you pray. You hold tightly to God and hope. It doesn’t leave your body, but it does leave your sight. It does pass. It will pass. You will live through it.

Grace be with you, parents and friends.



(Former) Cancer Mom Confession

Justin says he has a headache. Okay, no problem. I give him water. Maybe some ibuprofen.

It was always Tylenol before. Ibuprofen does something to your blood. Leukemia patients can’t have it. I can’t remember why, but I remember Tylenol never did much for the pain.

And just like that, I can hardly breathe. A random thought memory sends me reeling back into the rooms with awful lights. Awful smells. Pain. A bag of stranger’s blood and a bag of chemicals dripping down into my child’s veins.

I am there again. And I can’t get out. I can’t get out unless I anchor my mind to something. Something good. Sometimes a good memory. But, most of the time, it is words. Words on a page force my brain from the disarray of fight or flight to whatever part is more logical. To me, the amygdala is completely unreasonable, but can be commandeered with words and sentences.

So thank you for reading my words and sentences that, even after 7 years, are still needed to quell the panic attacks, bring me back to the present and make me breathe.

Justin is not sick anymore. He is here. His eyes are full of life and he is holding a baby chick. So carefully. So tenderly. God is faithful.

Two Years Post-Chemotherapy

Many times I am still asked how Justin is doing and many times I am reminded we did not walk alone.

Thank you for that.

Justin has now completed 6th grade with good grades and a leadership award of all things. This is the same kid who hid in our closet on many school mornings, hysterical with anxiety.

Justin played intramural basketball, bravely said his lines in school concerts, went camping for the first time and scored above average on a cognitive abilities test.

We signed a mountain of paperwork listing possible side effects of chemotherapy, including physical, mental, social and emotional.

Justin experienced some in each category. But with patience, prayer and an endurance that can only be explained by the grace of God, he has struggled and fallen, struggled and persevered, struggled and conquered.

I hope our story encourages you. Keep praying. Keep pushing forward. Just keep getting up. Stay down for a while to rest but don’t quit. If someone offers to help, take the help. And when it all feels too heavy and too dark and too impossibly difficult, hold onto hope.

See I am doing a new thing! Now it springs up; Do you not perceive it? I am making a way in the wilderness and streams in a wasteland.” Isaiah 43:19

If you are a parent of a childhood cancer patient in need of support, please feel free to reach out. I get it. Grace be with you.

Hills Not Climbed

I am thankful and grateful for how far pediatric cancer treatment has come, but I can tell you about hills not climbed.

Patient and parent PTSD is real. I’m not ashamed to admit it and will gladly talk to anyone out there who is interested in initiating an intensive, comprehensive, therapeutic survivorship program. And I’m not talking about verbally trudging through feelings for an hour on zoom, attending a nutrition class, taking physical therapy or throwing survivors free baseball tickets. I mean that’s great and all but the fall-out from three years of chemotherapy, illness, trauma, fear, confusion, getting loads of attention then suddenly none, not being treated normally then expected to blend into “normality” runs MUCH deeper.

…they are also “fat” and “a loser”

I am talking about teaching and guiding survivors on how to re-integrate into just being a kid again:

Social skills.

Conflict resolution.

How to accept failure.

How to not use illness to manipulate circumstances.

How to distinguish between anxiety over being sick and actually being sick.

Understanding that they are no longer the center of attention every single minute.

Realizing that kids are actually mean sometimes and now that they are “all better from cancer” they are also “fat” and “a loser” or any of the other adolescent-go-to criticisms that insecure kids (survivors) actually believe.

For now, I’ll just keep making it up as I go along

I have other ideas, just can’t think of them all right now. But I plan this maybe-too-idealistic-unattainable therapeutic process in my mind often. For now, I’ll just keep making it up as I go along. Every day I see how Justin struggles. I struggle. We struggle. But there is also learning, reward, success, healing, growth, change, beauty, faith, joy and HOPE. God is good.

I really don’t pray for change in circumstances too much anymore. What has to be, will be. I pray for change in ME. Give me strength in mind, body and heart to press on.

And grant us a measure of grace for one more day.

Day 1,621

I actually forgot!

As we pass the FIVE YEAR mark since Justin’s diagnosis on January 16, 2016, I can report with gladness that the anniversary date of his diagnosis did not send me into a bout of struggling through post-traumatic flashbacks and unrelenting dark thoughts. In fact, to my absolute joy, I forgot the date until today. I actually forgot!

A Huge STEP…

This may seem like a gross omission, since we have looked toward this time with such faith, endurance and hope. But as one who has struggled and suffered and persevered with Jeff, Nicky and Michael, alongside Justin, all of these many days, I view it as a huge STEP. By His grace, I have been able to move forward. We have been able to move FORWARD.

There came a time when posting updates became too painful for me. I had to take time for self-care, rest and even moving into a new house. There are several reasons why we moved, but it is not lost on me that staying in the physical place where we experienced the longest of nights and greatest of pain was not healthy for the mind. We are so very grateful that God provided an alternative.

…only Jesus Christ can heal the heart and soul…

While it is true that I have walked through dark places with Justin, Jeff, Nicky and Michael and what often felt like being very, very alone, I also know what is not true. I was never alone. By His Spirit, Jesus was with me. I know this is true because we are HEALING and we are daily BEING HEALED. To me, forgetting the diagnosis date, even briefly, is evidence! Yes, chemotherapy, with its host of problems and side effects, CAN kill cancer. But only Jesus Christ can heal the heart and soul after being broken over and over again.

Justin will not officially finish treatment and move into the survivorship program until the end of March 2021.

If you are still receiving these updates, thank you for following and praying. Grace be with you.

“…And behold, I am with you always, to the end of the age.” Matthew 28:20b

Justin, age 10. Five year cancer survivor. It’s an honor and joy to be his mom!

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.

Day 1027 – Last of the Dreaded Spinal!

Tomorrow. Justin’s last spinal tap, also known as a lumbar puncture. He has had twenty-seven.

Tomorrow. For the last time, we will drug him with Ativan for his copious needle anxiety, refuse him food (because he has to fast), support him while they place an IV, then sit close to his face while they prep and sedate him. A large needle will then be injected into his spine, withdrawing fluid and inserting methotrexate (a highly toxic drug, but one which, thankfully, kills cancer cells) directly into his central nervous system. His little spine and developing brain. He will be conscious. He will feel the pain of the needle. But, too loopy to cry out, a single, large tear will run down his face. Then, mercifully, Justin will fall asleep for a bit, only to wake up to his favorite foods.

That last part isn’t so bad.

Tomorrow. For the last time, we will schedule another round of chemo. Tomorrow, we will have a date ready to announce for his last treatment!

If Justin does not relapse, that is. He will not be considered cured until March 2021. But we have to believe he will make it. We have to believe he will survive.

Tonight, Justin and I talked about what we think a “superhero” actually looks like. And we agree on this. A hero isn’t the strongest or the smartest or the fastest. A hero is one who gets knocked down and KEEPS GETTING UP.

We talked about how God has allowed and helped Justin to keep getting up.

We are endlessly grateful.

Thank you for continued prayer and support. Don’t miss the exciting series finale coming soon!

 

 

 

 

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.