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!

Real Mom Confession

If you someday find yourself overwhelmed with work, kids, laundry etc. etc. and a sore yucky throat and you have tried cough drops, tea, honey, chicken broth, fresh lemon, Tylenol and Gatorade yet the pain prevails, don’t drink expired baby Orajel. Be better than me.

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!

Day 1536

075B83EC-07DB-433B-8310-CB6C88317FCFJustin is exceeding our expectations — playing flag football and going to basketball camp this summer.

If I didn’t still have the nightmares, I wouldn’t guess three years of chemotherapy to look at him. 59024689-1A99-4FA1-AF5F-D96BA3ED7CF5

Thank you ever so much for your prayers.

It’s getting super weird out there. Stay strong. Grace be with you.

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Day 1478

E36E7610-B622-432F-AFC5-7619E71C391CAnd still counting. Justin was not able to have his routine monthly physical exams and blood draws in April and May due to the effects of COVID-19.

I remained calm but extra vigilant about watching for suspicious symptoms.

D9A15686-C273-454F-AFEA-10D405B03CF4He continues to struggle with physical strength and stamina. But he also continues to improve little by little, slow but sure.

However, despite chemotherapy drugs being repeatedly injected directly into his spinal and brain fluid, his mind remains sharp as a whip. He continues to surprise me with high level reading comprehension, impressive vocabulary and calculating math problems in his head.

I am incredibly thankful for this, especially since my own mind seems to be growing dull as a butter knife.

I know there are much bigger issues than one little boy’s journey through leukemia, so I thank you for any amount of small or momentary prayer. And I hope you are encouraged by the evidence of Justin’s healing.

God is bigger than cancer. Grace be with us all.

 

 

 

 

What About the Torn Little Children?

Staying home allegedly advocates for the elderly and immunodeficient.

But who is advocating for the thousands of children being abused every day?

Being abused RIGHT NOW.

These children are now stuck at home with their abuser, who has very possibly lost their job, with no chance to go to school or day care and get a break from the maltreatment.

Where is the outrage for these children?

I want you to see them. They are locked in dark cabinets, sheds, closets. They are beaten, burned and cut. They are starved or forced to eat revolting things like animal feces. They are naked, defiled, shamed. They are called names, screamed at, spit on. They haven’t been hugged, loved or held in months, years, maybe ever.

Yes, I am purposely using rhetoric that will incite an emotional response. Be disgusted at me if you will.

The fact is, child protective agencies are reporting up to fifty percent fewer calls pertaining to instances of child abuse. This is NOT because it’s not happening. It’s because these children are not being SEEN by teachers, day care workers and other mandated reporters. Social workers are seeing their kids on FaceTime or sometimes at the front doors of their homes. 

You can’t always see bruises and burns standing six feet away. 

I appreciate the problem of COVID-19 and I empathize for those who have lost someone. I really do.

But what about the torn little children?

Thoughts on Reinventing Mother’s Day and a Tribute to a Very Special Mom

Well, honestly, my first inclination was to post a picture of my three handsome boys piled all around me with breakfast in bed and homemade cards.

Then I realized how incredibly tone deaf that would be…

DCABA843-62FF-4C14-9E5B-DDB024143218Then I realized how incredibly tone deaf that would be for those who are hurting today. I know moms who have lost their children to cancer or drugs or just disagreements, people who have lost their moms, women who cannot have children, single moms, those rejected by their moms, those in foster care who were taken from their moms and, finally, those who cannot be with or have lost their moms to this current pandemic.

…take a moment to  “read the room” before jumping on our social media pages.

Today is supposed to be a celebration of motherhood, but for many it is bitter sweet or just plain bitter. However, most will post the same kind of pictures I almost did. Not that we shouldn’t we grateful for how we are blessed. Absolutely, we should. But we can have an incredibly thankful heart and still take a moment to “read the room” before jumping on our social media pages.

ECE2091B-0E55-45C9-803D-1D391C3CEE66While I am eternally grateful for my boys, instead of posting a picture that may cause another person grief because it is a situation that is currently beyond their reach, I want to dedicate this Mother’s Day to three people who had an amazing mom. Their mom had a beautiful smile and an infectious laugh. She listened without judgement and loved unconditionally.

She had a keen ability to laugh at herself and the hot pan of flying chicken was no exception. 

She was no artist in the kitchen and I’ve been told a story many times about chicken being thrown down the hall one time when one of her children complained, “chicken, again?” Years later, a piece of petrified chicken was found behind a picture frame. She had a keen ability to laugh at herself and the hot pan of flying chicken was no exception. 

2DCF70CE-748D-429B-9C27-02FC75DCD276But her creativity shown in many beautiful scrapbooks she made. You see, she had a disease that she knew would take her life in a cruel and untimely way. She made sure to spend her last years writing anecdotes, collecting photographs and telling her story so that she would live on with her children and grandchildren.

I know these three people very well who are missing this very special mom today. Because she is my mother-in-law, who passed from complications due to a long battle with multiple sclerosis in November, 2015.

80353C84-5898-447C-9A2F-8B01D599D93ESo to my husband, Jeff, sister-in-law, Julie, and my bro Jason, today, I “celebrate” Mother’s Day a little differently by sharing your burden and dedicating time to remember her with you. I also offer the reminder to hope in God. I know that Jesus carried Mom home because of her faith in Him and her understanding of Amazing Grace. 

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Katharyhn Helen Johnson-Pierantozzi 9/3/1945 – 11/9/2015