Cancer

Stay With It One More Day

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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.

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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.  

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 The Perseverance Thing

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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.

 

Untold (Part One)

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img_3267We said goodnight to friends and I began to clean up the kitchen. My mind was troubled. Why wasn’t Justin playing with the other kids? I had taken him to see three different doctors and had two set of x-rays done, yet he still complained of hurting feet. I had put him to bed earlier with a dose of children’s ibuprofen.

A loud, frantic scream broke my thoughts. I froze. And then another. I abandoned dirty dishes and moved quickly to Justin’s side. Jeff was already there.

Justin was sitting up in bed, tears streaming, feet kicking; as if he could kick the pain away from him. I sent Jeff for an ice pack and took Justin in my arms. He was burning. I carried him with me to grab the phone. I dialed the number for our pediatrician, although I had already decided he was going to see a doctor that night.

Midnight. I did not want to wait for a sitter to come so we decided Jeff would stay home. I was all silent prayers and steady hands as I drove to Virtua pediatric emergency room. I denied it, emotionally, just enough to function. But, inside I knew something was very, very wrong.

Another set of x-rays and a blood draw. The IV placement was the worst part. Or maybe carrying him to radiology. I don’t know. It was all kind of me being determined to get answers, ignoring the I hate yous and tiny punches finding their mark on my back.

3 AM. Justin finally dozed off. My phone was dead. I needed water or coffee or something. I asked the nurse to watch him, found a diet coke and left my phone at the front desk charging station. Walking back to his room, I noticed the emergency room was eerily quiet and still. Then the doctor was there.

It’s funny what you can think about even when receiving bad news. She was talking, talking, talking. “Bone de-calcification, white blood cell count.” She has got to be eight months pregnant. “It could be rheumatic disease.” Arthritis? Like old people? “Red blood cell count.” Maybe even nine months. “We are transferring him to CHOP. Waiting to secure a bed. I’m going to call an ambulance right now. Lastly, I want to warn you so that you’re not blindsided.” Is she kidding right now? I am most definitely already blindsided. “I highly suspect that Justin has some type of leukemia. Do you have any questions?”

Me: Okay.

Her: Do you understand everything?

Me: What is bone de-calcification? Why didn’t the other doctors tell me that? I had his feet x-rayed twice.

Her: It means that the bones in his feet look like they have been eaten by moths. I pulled up his previous set of x-rays. It wasn’t there. The damage to his bones happened SINCE Justin’s last set of x-rays.

I tried to figure out the weeks. When did I have him x-rayed last? Right before Christmas. How long had he suffered? I didn’t know. I remembered, with guilt, sending him to school after he cried while putting on his shoes. But I couldn’t think because eaten by moths and leukemia rang so loudly in my ears; and that kind of hot, acidic stuff that definitely is vomit but you can swallow, still stung my throat. And there was no time for guilt.

Me: Okay.

Her: Do you have any other questions?

Me: No.

Her: I’m really sorry. Do you need anything?

Me: I need to use the phone.

This happened January 15, 2016, exactly one year before today.

 I love the Lord, because he hath heard my voice and my supplications. Because he hath inclined his ear unto me, therefore will I call upon him as long as I live. The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. Then called I upon the name of the Lord; O Lord, I beseech thee, deliver my soul. Psalm 116:1-4

 

 

Love and Lemonade

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A very special thank you to our friends who stopped by to support Alex’s Lemonade Stand in honor of Justin and other childhood cancer warriors. We dedicate our time and efforts to all the children and families living in this struggle.

Grace be with your every high and low, every needle stick and surgery, every fear and anxiety, every tear and tantrum, every mouth sore and stomach pain, every port access and adhesive removal, every victory and defeat, every “yucky oral meds time” and chemo infusion, every steroid-induced-binge-eating session and time spent vomiting, every physical and occupational therapy session, every rude stare and kind word, every blood draw and transfusion, every gift and sacrifice, every thought and feeling, every radiation treatment and scan, every piece of good news and bad, every shock and strand of hair lost, every sleepless night and day spent surviving, every exam and counseling session, every real and forced smile, every hospital stay and homecoming.

Every joy and every sorrow.

This post is dedicated, with love, to Alex’s family. Alex, you are a hero. Thank you for your legacy of love and lemonade.

Alexandra Scott

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Jan. 18, 1996 – Aug. 1, 2004

 

Love’s Greatest Victory

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cross-danger1Last night, I yelled at Nicky because he kept making careless mistakes with his math homework. Like really yelled at him. Like a lunatic. Over multiplication.

But I wasn’t really mad at Nicky or the fundamentals of fourth-grade math. I was just mad. Angry. Annoyed. Agitated. Because this recent cold, damp weather is not a friend to muscular dystrophy. Because my son has cancer. And because my days are filled with constant mind-draining, mentally exhausting negotiation with a five-year-old to STEP FORWARD “because everything is okay.”

Cancer has been like a tornado in Justin’s life, coming on suddenly and fiercely, leaving a path of destruction in its wake. He’s continuously disappointed over missed activities, physically hurting from chemotherapy and afraid of EVERYTHING. And, yes, there have been big victories and huge blessings. But there are days we just can’t seem to remember them clearly no matter how hard we try.

Yes, I get frustrated and angry and tempted to think that God is not good or loving. But I FIGHT those feelings with Truth. I often go to the Psalms and the promise found in Romans 8:28. “And we know that all things work together for good…”

But today, I am also reflecting on a sermon by Jonathan Edwards I’ve recently read. On Christ’s agonizing prayer to the Father on the night He was betrayed (Matthew 26:36-46), Edwards writes this:

Thus powerful, constant, and violent was the love of Christ; and the special trial of his love above all others in his whole life seems to have been in the time of his agony. For though his sufferings were greater afterwards, when he was on the cross, yet he saw clearly what those sufferings were to be, in the time of his agony; and that seems to have been the first time that ever Christ Jesus had a clear view what these sufferings were; and after this the trial was not so great, because the conflict was over. His human nature had been in a struggle with his love to sinners, but his love had got the victory. The thing, upon a full view of his sufferings, had been resolved on and concluded; and accordingly, when the moment arrived, he actually went through with those sufferings.

My favorite line is, “but his love had got the victory.” Oh praise him! Christ could have chosen to forego the cross, but He went willingly because of His great love for us. Love’s greatest victory was won for me! How can I not know and grasp and believe and rejoice that God is GOOD?!

Well I just put Quiche and organic broccoli in the oven and am able to take a minute to conclude this post. Don’t be impressed. We had hot dogs last night.

Today, I apologized to Nicky and asked for his forgiveness. Then I jumped on him where he was sitting on the couch and gave him hugs and kisses until he laughed and said, “Yes, I forgive you, mom, but you’re crushing my leg!”

If there is one thing I’ve taught my boys, it’s that we are all in need of grace. To be given as much as we have received.

My thirty-eighth birthday is next week. I’m too young for all this grey hair. 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.