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 1588

Justin was in at CHOP clinic Friday for a physical exam and blood draw. He is still cancer-free.

Just like residual anxiety, relief hits me at the oddest times. Today it was while baking. Overwhelmed with gratitude, I bawled all over my pumpkin batter. Those muffins will be interesting.

Thank you for continued support and prayer!

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.  

Parent Guilt

“Why are you sick again, mommy? I hate you!” my 4 year old exclaimed recently because I was having difficulty getting up to make him a peanut butter and jelly sandwich. Initially the words stung more than the pain in my back. But considering he is 4 and understanding that it is not me he hates but the illness that is changing his world a bit helped to put his words in perspective. Notice I wrote “his world” because for the most part kids truly think the world revolves around them!

Let’s talk parent guilt. If you have any chronic illness and you have children, you have most likely experienced a feeling of guilt because at some point you couldn’t make it to the dance recital, karate class, or soccer game. You couldn’t attend a field trip, throw the ball around, or cook a decent meal. You couldn’t take them to the park, beach or baseball game. You forgot to buy them shoes that actually fit, sign a permission slip or send in snacks for the school party.

Before I became ill, the needs of my boys were met almost instantaneously. I see now that perhaps it was a little too quickly. I am a very attentive mom and, before the pain and weakness, very active so I was able to hover and slave and well…spoil. It wasn’t always a coddling thing. Sometimes I gave them what they wanted quickly just to shut them up. Don’t judge. If you have kids, you’ve been there!

That day, my 4 year old said something that opened my eyes to a little monster who I created! My friends, through prayer and God’s grace, I have a new perspective on “parent guilt” concerning my illness. Our children do not need to grow up in some pseudo perfect existence where their needs are met in an instant and their parents bend over backwards to fill their social calendars.

Parents, my friends, we don’t need to feel so guilty if we can’t physically do something for our kids or with them! I have learned that it is actually good for them to experience a little disappointment in life because it’s REAL. Life is not Disney World and the sooner they learn that the better equipped they will be to handle bigger challenges they will surely face.

Please don’t get me wrong. I am not suggesting you just sit on the couch and say – yo kid you’re on your own!  But I think it’s important to discuss with them in a “kid-appropriate” way about your illness and explain why you may not be able to do something or attend an event. Another more practical suggestion is to come up with things you can do together such as movie night, reading books, computer games, or good old fashioned talking – imagine that! Also, ask a friend or family member to be your “stand-in”, someone who would be willing to go to the recital or game and cheer them on!

Psalm 103

Journey with me.