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 1641

Justin is holding steady in remission, with great blood counts and a good physical exam today. He has been visiting the oncology clinic every two months, but, going forward, he will now receive quarterly check-ups.

We are told Justin will begin the survivorship program in 2022!

This morning, he said, “Mom, when I grow up I want to be either a preacher or a mall cop or probably both actually.”

(Um okay?)

Me: “I think that would be perfect.”

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!

Pictures of Pediatric Cancer

Swipe left to view our story in photos — almost 5 years of laughter and tears, joy and pain, triumph and loss, highs and lows, faith and fear, heartbreak and hope. And ultimately a new normal for a patient, a mom, a dad and two siblings — all survivors of pediatric cancer.

Be encouraged cancer parents, and hold onto hope!

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!

 

 

 

 

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.

IMG_9868

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.  

Absolute Edges

I received a beautiful letter from Michael last night.

It read:

My love for you is as far as the moon. When I’m sad, you make me laugh. When I’m hungry, you order pizza.

Well, it doesn’t say a whole lot for my “homemaker” skills. No, I don’t iron or cook much from scratch, but I will go to my absolute edges to make sure my boys laugh often and know they are loved.

Michael will start counseling Friday. Justin will have chemotherapy injected into his spine next week. Morning nausea and lower leg weakness for Justin, and frequently talking through “worries and scares” with Michael is my daily reality.

Picking up on my cues, Nicky has been really good at making us all laugh. He has developed a character named “Stupid Bob” who comes to visit when things get way too intense in here. Albeit very politically incorrectly named, Stupid Bob is much-needed comic relief and just has to exist right now.

It is said that in the part of our brain called the amygdala, exists our “fight or flight” stress response. But, this is, generally, supposed to be a short-term thing.

torrent-neufWell, I’ve been in “fight” mode for 501 days. I think of this as being at my absolute edges. I don’t know what this says about my sanity. But I am always and only, leaning into my safety guard rail whom is Jesus, particularly through the Psalms.

Also donuts. But mostly Psalms. Grace be with you, my friends.

Dirt and Pizza on Day 486

Justin has an ear infection and steroid side effects to contend with this week, which means we are cranky and eating everything in sight. Pizza and lemonade. A real steroid craving regular.


I’ve spent most of the week caring for him, homeschooling and, rather impulsively, planting vegetables and a flower garden. This is very possibly a sign of impending breakdown as this is way out of character for me. I generally don’t care for dirt and earthworms. However, we have made several “cancer friends” on social media and wanted to create something to honor them as well as their families. We chose plants that attract butterflies. To me, these amazing creatures paired with growing vegetables inspire hope. We have enjoyed sharing pictures with our friends all over the world.

Oh and lilac smells wonderful. So far, we have spotted one visiting butterfly.

Today, a sweet friend actually asked about an update as if she looks forward to reading. That was very much appreciated. If there is ever a significant amount of time between updates, it’s usually because I’m hiding in the laundry room with a box of Twinkies. Thank you for your prayers and support.

The earth is full of the goodness of the Lord. Psalm 33:5b

 

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.