Cancer

Thoughts on Overcoming Defeat as a Cancer Parent

/ KP / Leave a comment

Defeat. You will go there as a cancer parent. I felt defeated, and many days, I was defeated, whether by circumstances or my own mistakes.

But what I kept going back to is that, no matter what happens, my soul cannot be defeated in Christ. Now, believing this will not fix your circumstances or relieve physical pain or mental stress in the moment. Not at all. Nope, it really does not do that. It will not cure your kid’s cancer or make you any less exhausted or pay your bills or do your laundry. It may or may not stop you from taking that drink or eating that whole cake or whatever vice or bad habit you’ve picked up along the way.

But this FAITH gave me HOPE.

I think they, whoever “they” are, say we can live through anything except having no hope. People with all good intentions said a lot of things to me about self care and yoga and kale chips and walks in the woods that never helped a thing. I won’t do that.

But one thing I did and do is hold onto hope by the tips of my scrawny bitten fingernails.

To Live Through It

/ KP / 1 Comment

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

/ KP / 1 Comment

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

/ KP / 3 Comments

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

/ KP / Leave a comment

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

/ KP / 4 Comments

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!

Last Chemo Date Scheduled

/ KP

March 25, 2019.

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

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 positive and hopeful.

I am elated and I am afraid.

Our hope is in the Lord.

Day 1027 Last Dreaded Spinal Tap

/ KP / 1 Comment

Tomorrow. Justin’s last spinal tap. 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  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!

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!

Upcoming Surgery and Perseverance

/ KP / 1 Comment

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 have a broken out teenager face and way too many thoughts about Amish 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 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

Untold (Part One)

/ KP / Leave a comment

img_3267We said goodnight to friends and I began to clean up the kitchen. My mind was troubled. Why wasn’t Justin playing with the other kids? I had taken him to see three different doctors and had two set of x-rays done, yet he still complained of hurting feet. I had put him to bed earlier with a dose of children’s ibuprofen.

A loud, frantic scream broke my thoughts. I froze. And then another. I abandoned dirty dishes and moved quickly to Justin’s side. Jeff was already there.

Justin was sitting up in bed, tears streaming, feet kicking; as if he could kick the pain away from him. I sent Jeff for an ice pack and took Justin in my arms. He was burning. I carried him with me to grab the phone. I dialed the number for our pediatrician, although I had already decided he was going to see a doctor that night.

Midnight. I did not want to wait for a sitter to come so we decided Jeff would stay home. I was all silent prayers and steady hands as I drove to Virtua pediatric emergency room. I denied it, emotionally, just enough to function. But, inside I knew something was very, very wrong.

Another set of x-rays and a blood draw. The IV placement was the worst part. Or maybe carrying him to radiology. I don’t know. It was all kind of me being determined to get answers, ignoring the I hate yous and tiny punches finding their mark on my back.

3 AM. Justin finally dozed off. My phone was dead. I needed water or coffee or something. I asked the nurse to watch him, found a diet coke and left my phone at the front desk charging station. Walking back to his room, I noticed the emergency room was eerily quiet and still. Then the doctor was there.

It’s funny what you can think about even when receiving bad news. She was talking, talking, talking. “Bone de-calcification, white blood cell count.” She has got to be eight months pregnant. “It could be rheumatic disease.” Arthritis? Like old people? “Red blood cell count.” Maybe even nine months. “We are transferring him to CHOP. Waiting to secure a bed. I’m going to call an ambulance right now. Lastly, I want to warn you so that you’re not blindsided.” Is she kidding right now? I am most definitely already blindsided. “I highly suspect that Justin has some type of leukemia. Do you have any questions?”

Me: Okay.

Her: Do you understand everything?

Me: What is bone de-calcification? Why didn’t the other doctors tell me that? I had his feet x-rayed twice.

Her: It means that the bones in his feet look like they have been eaten by moths. I pulled up his previous set of x-rays. It wasn’t there. The damage to his bones happened SINCE Justin’s last set of x-rays.

I tried to figure out the weeks. When did I have him x-rayed last? Right before Christmas. How long had he suffered? I didn’t know. I remembered, with guilt, sending him to school after he cried while putting on his shoes. But I couldn’t think because eaten by moths and leukemia rang so loudly in my ears; and that kind of hot, acidic stuff that definitely is vomit but you can swallow, still stung my throat. And there was no time for guilt.

Me: Okay.

Her: Do you have any other questions?

Me: No.

Her: I’m really sorry. Do you need anything?

Me: I need to use the phone.

This happened January 15, 2016, exactly one year before today.

 I love the Lord, because he hath heard my voice and my supplications. Because he hath inclined his ear unto me, therefore will I call upon him as long as I live. The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. Then called I upon the name of the Lord; O Lord, I beseech thee, deliver my soul. Psalm 116:1-4