survivor

Hills Not Climbed

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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

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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

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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!

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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!