Each time I calculate and record the days of Justin’s ordeal, I imagine I am Tom Hanks in Castaway, scratching it out on a cave wall. Except I wouldn’t last two hours living as a primitive. No chapstick? I’m out.
Today, Justin will be seen in clinic for a CBC (complete blood count) and physical exam. There is a term coined “scanziety” in the childhood cancer world, and maybe beyond. Of this, I do not know. But, in our world, it refers to the apprehensive feeling a parent feels as they are placing their child into CT to scan for the possible return of a tumor.
Now, Justin had leukemia, a “liquid tumor” if you will. It flowed throughout his entire body. So he is not placed in a CT scan, rather the blood is checked for abnormalities.
I do believe there is yet to be a term invented for this. Let me try. CBCziety? No. Bloodziety? Dreadful. It just doesn’t seem to work for leukemia.
I decided that I won’t suffer from this disorder, whatever you want to call it. (Clearly, I already have other disorders, let’s be honest). I won’t live in fear of the cancer returning. What will be, will be. I can’t control any of it. So, instead, I choose to embrace each day, with all of their respective flaws, and try to make the very best of it all.
This kid has the idea. Grace be with you, my friends.
Every now and then I get in the mood to turn my kitchen into a science lab, producing something, hopefully, edible. This is hands-down the best chocolate cake I’ve ever had. I simply had to endorse and share the recipe!
Big bro Michael helped out with physical therapy today. Michael is older by sixteen months, but I am often asked if he and Justin are twins. You can see why. They share clothes and even a big drawer full of socks and underwear. Hopefully it’s all clean.
Justin is also swimming, eating well and getting stronger everyday. I mean we aren’t downing kale smoothies quite yet, but we are making healthy food choices in general.
He will be back in clinic next week for a check-up and CBC. Each time they tell us his blood is still clear of abnormal cell growth, also known as leukemia, my heart soars.
Thank you for continued support and prayer. All glory to God.
Today, with Jeff as coach and Justin the quarterback, their flag football team took the championship. Justin is on cloud nine.
For an eight-year-old who survived cancer and just finished three years of chemotherapy, this is the greatest success he can imagine at this time in his life. To Justin, this is HUGE.
Even when things are hard and painful and darkness is pushing in, still keep getting up. You just never know what God is going to do.
Thank you for continued support and prayer. Hold fast to hope. Grace be with you, my friends.
Remember my affliction and my wanderings, the wormwood and the gall!
My soul continually remembers it
and is bowed down within me.
But this I call to mind,
and therefore I have hope:
The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
”The Lord is my portion,” says my soul,
“therefore I will hope in him.” Lamentations 3:22-23
Life After Chemo
Justin continues to go to monthly check-ups where they examine his body for lumps and withdraw blood to analyze.
He will also have his heart monitored periodically. Monday we went for an EKG and echocardiogram.
We also met with a nutritionist to make a plan to slowly transition him from steroid-induced-craving-super-salty-junk-foods to more healthy choices. You can see how interested he was in THAT conversation.
But I am allowing him to make some of his own choices and that is huge. We made a list of foods he likes, with nutritional modifications, as well as some healthy foods he is willing to try.
Part of it is clearly behavioral and habitual. He felt terrible and out of his mind on steroids for 3 years, but french fries made it all better for 10 minutes. He wasn’t given any choice about being sick and in pain and having surgeries and taking needle sticks and living in the hospital, but demanding pizza made him feel a little bit in control of the rotten situation.
So I get this and realize it is a process that will take time. It’s about making fundamental changes rather than dieting.
It’s about working really hard to find our “new normal” as an experienced cancer mom and friend shared with me recently.
May God grant us wisdom as well as His continued undeniable strength. Grace be with you, my friends.
Still working on strengthening Justin’s chemotherapy-weakened body. But this week, physical therapy is on hold since strep throat came to town. Two out of three kids are man-down; it’s antibiotics and popsicles all around.
I was diagnosed with reflux and gastritis and told to “get less stress in your life” and “stop drinking soda.” The first suggestion is just laughable and OBVIOUSLY giving up soda would just lead to MORE stress.
I was asked to write an advice-style blog for a childhood cancer foundation in London. Please see my first article below and feel free to share with any cancer parents you might know.
A very special thank you to everyone who was able to attend Justin’s “last chemo” party! You helped create a very special, joyful memory for him. And thank you all for continued support and prayer.
May God be glorified as we continue moving forward in faith. Grace be with you, my friends.
It’s a little windy, but God gave us sunshine! So throw on a hoodie and come hang with us anytime 1-4pm, James Atkinson Memorial Park in Sewell.
We will gather in the pavilion next to main playground around 2pm to briefly say a few words, then plan to collect up your kiddos for a game of kickball at Justin’s request. Feel free to join the game or indulge in various baked goods. I know they will be extra yummy because they are products of friends, fam and the local bakery, not me.
Hope to see you there!
When your child is diagnosed with cancer, you just hope and pray they will survive.
Justin did survive. And I am beyond grateful.
But, after three years of chemotherapy, you are handed back a different child. A child with special needs. Emotional, physical, social.
These special needs may not last their entire lives. Or, they may.
And I am okay with that. I’m pretty much thrilled with that. But, it doesn’t make me feel anymore prepared.
As I’m sure any parent of a child with special needs will tell you, we don’t feel more equipped than anyone else. We are not any more qualified or composed.
We just don’t have a choice. And, if you have other children as well…then, there’s that.
So, we do the best we can.
And, sometimes, that may mean I look really together and on top of things.
Other times, it looks like me hiding in the laundry room up to my eyeballs in candy wrappers talking to the walls.
So, there it is.
Justin continues to work hard in therapy and wear his leg stretching boots during rest time. His therapist and I also put together a plan for him to wear orthotic inserts.
My goal this summer is to hopefully improve the condition of his legs and feet with therapy and exercise while also getting rid of the extra weight he has gained.
This week, Justin will have an echocardiogram as well as his first CBC and physical exam since stopping chemotherapy.
Justin is looking forward to celebrating the end of chemo with his friends and family this coming Saturday! All are welcome to join us from 1-4pm at James Atkinson Memorial Park.
I waited patiently for the Lord;
And He inclined to me,
And heard my cry.
He also brought me up out of a horrible pit, Out of the miry clay,
And set my feet upon a rock,
And established my steps.
He has put a new song in my mouth Praise to our God;
Many will see it and fear,
And will trust in the Lord. Psalm 40:1-3