Day 1027 – Last of the Dreaded Spinal!

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!

 

 

 

 

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Stay With It One More Day

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.  

Absolute Edges

I received a beautiful letter from Michael last night.

It read:

My love for you is as far as the moon. When I’m sad, you make me laugh. When I’m hungry, you order pizza.

Well, it doesn’t say a whole lot for my “homemaker” skills. No, I don’t iron or cook much from scratch, but I will go to my absolute edges to make sure my boys laugh often and know they are loved.

Michael will start counseling Friday. Justin will have chemotherapy injected into his spine next week. Morning nausea and lower leg weakness for Justin, and frequently talking through “worries and scares” with Michael is my daily reality.

Picking up on my cues, Nicky has been really good at making us all laugh. He has developed a character named “Stupid Bob” who comes to visit when things get way too intense in here. Albeit very politically incorrectly named, Stupid Bob is much-needed comic relief and just has to exist right now.

It is said that in the part of our brain called the amygdala, exists our “fight or flight” stress response. But, this is, generally, supposed to be a short-term thing.

torrent-neufWell, I’ve been in “fight” mode for 501 days. I think of this as being at my absolute edges. I don’t know what this says about my sanity. But I am always and only, leaning into my safety guard rail whom is Jesus, particularly through the Psalms.

Also donuts. But mostly Psalms. Grace be with you, my friends.

Dirt and Pizza on Day 486

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

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

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.

Love and Lemonade

 

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