Grace

To Live Through It

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To live as a parent of a child, formally a blood cancer patient. What does it mean to live through it?
Long after the last drop of your child’s blood is medically deemed unpolluted with an alarming number of mutated leukocytes, fear still lives in you like a latent virus infecting your own cells. Dormant. Inactive at times. But, still, it is alive. You almost forget it is there, until, what otherwise might be a minor event or innocuous comment, somehow inflames panic.
The fear virus.

The fear virus flares up like a raging case of dermatitis. You feel the painful swelling and annoying itch, yet must carry on with your duties. But you know it’s not your best work. You attempt to cover the defenseless, raw blemishes. But you know others can still see them. You lament the discomfort; the whole sleepless, joyless, listless ordeal.

You apply ointments and balms, oils and antiseptics. But nothing works. You just have to let it run it’s course.

All you can really do is wait for it to pass.

Likewise, you wait for the fear virus to pass. You pray and you wait and you pray. You hold tightly to God and hope. It doesn’t leave your body, but it does leave your sight. It does pass. It will pass. You will live through it.

Grace be with you, parents and friends.



(Former) Cancer Mom Confession

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Justin says he has a headache. Okay, no problem. I give him water. Maybe some ibuprofen.

It was always Tylenol before. Ibuprofen does something to your blood. Leukemia patients can’t have it. I can’t remember why, but I remember Tylenol never did much for the pain.

And just like that, I can hardly breathe. A random thought memory sends me reeling back into the rooms with awful lights. Awful smells. Pain. A bag of stranger’s blood and a bag of chemicals dripping down into my child’s veins.

I am there again. And I can’t get out. I can’t get out unless I anchor my mind to something. Something good. Sometimes a good memory. But, most of the time, it is words. Words on a page force my brain from the disarray of fight or flight to whatever part is more logical. To me, the amygdala is completely unreasonable, but can be commandeered with words and sentences.

So thank you for reading my words and sentences that, even after 7 years, are still needed to quell the panic attacks, bring me back to the present and make me breathe.

Justin is not sick anymore. He is here. His eyes are full of life and he is holding a baby chick. So carefully. So tenderly. God is faithful.

Two Years Post-Chemotherapy

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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

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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 1641

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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

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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!

Dirt and Pizza on Day 486

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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 Perseverance

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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.

 

The Dawning Time

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fullsizerender-39The people walking in darkness
    have seen a great light;
on those living in the land of deep darkness
    a light has dawned. Isaiah 9:2

Leaving Nazareth, he went and lived in Capernaum, which was by the lake in the area of Zebulun and Naphtali—to fulfill what was said through the prophet Isaiah:“…the people living in darkness
have seen a great light;
on those living in the land of the shadow of death
a light has dawned.” Matthew 4:13-16

What has impressed on me more than anything this Christmas is the link between Scriptural prophecy on the coming of Christ and the fulfillment recorded in the gospels. I mean I KNEW about it and I BELIEVED it. But this year it’s really jumping off the pages for me.

God said Jesus was coming. People wrote it down. Everything He said would happen, did happen. People wrote it down. And the pages survived and flourished in translation for thousands of years. This is unequivocal reliability.

We will all most likely spend the next twenty-four hours or so in various kinds of traditional Christmas activities or preparing for said activities. And we will feel joy, nostalgia, sentiment, perhaps great sadness. But, to me, none of this comes close to the soul-bending awe that results when I think about the dawning of a Light that has reached down, in great hope, to our helpless state of darkness.

Even on a day sometimes referred to as the Festival of Lights, we can experience that dimmest kind of murkiness, simply resulting from our imperfect existence. May you know and see and feel and believe that which darkness CANNOT prevent from breaking through.

To me, Christmas is a beautiful reminder and celebration of the dawning time.

My sincere gratitude for your prayers and support as we continue to journey with childhood cancer. Justin and the boys enjoyed decorating cookies last night. Grace be with you, my friends.

I Won’t Ever Let You Stay Down

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Taking care of Justin is like taking care of a newborn or a toddler. I spent most of the day cleaning him up, supporting him while he walked, carrying and feeding him.

Tonight he got up from the couch to use the bathroom. I couldn’t get there in time to “spot” him as he was walking. He lost his balance and fell to the floor. Of all the painful, scary things we have been through, seeing his weak legs give out affected me the most.

Because it drove home feelings I’ve had nagging at me all week. Cancer is robbing Justin of being a little boy. Justin was active, rambunctious and loved to play sports. He was a fast runner and really good at soccer. Now he has weak, pencil-thin legs that can’t support him when he is tired. He is quiet and despondent. My heart aches desperately when I look into his blue eyes, once bright with mischief and enthusiasm, now darkened with fatigue and sadness.

Seeing him fall also hit a little too close to home. I often struggle with muscle weakness of the legs and mine have “given out” on me on more than one occasion. I hated seeing it happen to my five-year-old child.

So I drench my pillow and pray, “How long, Lord?” And I plead with Him to heal Justin and restore my little boy.

And people say to me, “How can you have faith? Why does God allow this to happen?”

I understand those questions. And I do pour my heart out to God in anger, frustration, fear and sadness. But I never ask why. Because whatever purpose God is working through all of this is too fantastic for me to understand. His ways are not our ways. (“For My thoughts are not your thoughts, Nor are your ways My ways,” says the Lord.“For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts. Isaiah 55:8-9)

And because the God of the universe doesn’t owe ME an explanation.

And because I trust God. I trust His reasons. After all, He was willing to allow His own Son to die on a horrid cross for me. When I think of this incomparable measure of grace, I trust the One who is the author of my faith. (“Looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. Hebrews 12:2)

To put it very simply, I trust Someone who was willing to do THAT.

Although I don’t expect to know why Justin is suffering, I AM promised that God is with me and we are not forsaken. (“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8)

So I cling to this promise for dear life and continue to hope in my salvation and my God. For God alone my soul waits in silence;
    from him comes my salvation.
He alone is my rock and my salvation,
    my fortress; I shall not be greatly shaken. (Psalm 62:1-2)

After I held him in my arms, I told Justin this, “You know what I do when I fall down? I get back up. Falling down doesn’t make us weak, staying down does. I won’t ever let you stay down.”

Grace be with you, my friends.