Thursday, July 09, 2015

The middle pages

I have found myself feeling, and staying, very low.  The kind of low that has you curled up in the fetal position on your closet floor.  The kind of low that makes you cry in public, randomly, and without discretion. The kind of low that clouds your thinking and inhibits your ability to do things that you HAVE and NEED to do.  Like parent.

My kids have been trying to support me and our roles have suddenly been reversed. It feels wrong and like a huge failure on my part. 


I walked down our drive to our mailbox in one of the only times of solitude I have had.  We had received the phone call stating that the cancer was still in Steven's marrow only an hour or so before.  The walk was filled with tears, and prayers, as well as questions and uncertainty.  Sobs racked my body like they hadn't since Steven's initial diagnosis and there was no keeping them in.

When I raised my head I met Lakyn's eyes as she was standing in the middle of the drive.  

I had no idea she was anywhere around and I immediately felt guilty that she had caught me in such an intense moment of weakness.  She came to me and hugged me and said, "It's going to be all right".  Unable to stop what had already started I found myself admitting that it just might NOT be alright.  There was no guarantee.

In the wisdom of someone much older she told me that she knew that, but that this was God's plan.  She hugged me and said that this time was an opportunity to draw closer to God and for her daddy to also strengthen his relationship with Him as well.  

I confessed that I was so afraid of losing her daddy and by my absence during these times, losing her and Blake as well.  I wasn't able to be there each day and night, and will be separated once again. Others celebrate with them the things I should be celebrating.  It was only when I choked out, "I'm your biggest fan!" I want to be here to cheer you on!" that she admitted that she was going to cry.

But she didn't.

With the determination that was given to her by her daddy's genes, she said that she could see the improvements that he was making every day and that he was tough.  This transplant might be all he needed and if not, she believed that HE was tough enough to go for a third.

She walked me back to the house and kept her arms around me.  I went inside and to my bathroom to wash my face.  She followed me and I apologized for my weakness and selfishness.  She rubbed my back and again, in a wisdom FAR beyond her years, she told me that she knew I had so much to worry about.  "You've got daddy, me and Blake to worry about and even more things than I know, but all I have to worry about is daddy...and you."

I am trying my best to eliminate my name from her list.  

The last couple of days I have noticed a concentrated effort on both her and Blake's part to lift MY spirits.  They won't fail.  I will not let them.  I have to rise above this.

Blake, the child who is wired like me, even reminded me of the bright side.  He came to me and said, "A week ago we didn't know that there was any option other than another transplant... Don't be upset that we are on the road we had originally prepared to be on."

He is right.

I will push my mind to stay on track.  I have to.

The kids both made me bracelets.  One says, "Smile Mommy" and the other says "sklb❤️shelton" (representing us all).  

(The orange bracelet was given to me by a friend that I met who has also went down the transplant path with her husband.)

Even more poignant was a quote the kids had written for me on the leaf of a handmade flower.  It was a quote they had heard years ago on a Richard Petty interview (of all places) and I didn't know they had even taken notice. It is, "Don't put a question mark where God puts a period."  I am reminding myself of this daily.

Please pray that I can see the story that God has written for my life as it is still unfolding.  I am spending all my energy trying to skip to the last page, trying to figure out how this story will end, instead of living out the pages that have been written in the middle.  


As I am writing this, Steven is currently receiving platelets here at Mercy.  

He will return on Monday and start chemo for seven consecutive days.  It is outpatient and an hour infusion.  I am thankful that we are at least close to home, and can return there each day.

The doctor stated that there is a small chance that this chemo could put him back in remission, but that would be a bonus, and not what they were expecting, or shooting for.  The intent is to merely keep the leukemia from exploding before transplant.  This round of chemo will be, in her words, "like water" in comparison to what he has been through.

We are also backing off on the immunosuppressants in hopes that Jammie's cells might kick back in and take over the lingering cancer for now.  However, another transplant is in our future in the next 6-8 weeks.

She didn't feel another aggressive round of salvage chemo would be worth the strain on Steven.  There is only a 10% chance that it would be effective since the last round wasn't.  She felt it more beneficial to do the seven day chemo regimine, allowing Steven to be at home and regain strength, weight and mental fortitude.  And he HAS gained weight. He is up ten pounds since June 23rd, weighing in at 123.

I have been doubtful of the results of the next transplant, simply because EVERY. SINGLE. THING. went right last time and then...the cancer came back.  We had every indication that Jammie's immune system was healthy and doing it's job, but this cancer is sneaky, and transforms and changes to fit the environment.  

How, oh how, could the next one go any better?

Dr. Jacoby assured me that it certainly could and that if they didn't believe it, they wouldn't be doing it.

I also have to remind myself of THIS daily.    

Please, please pray and ask for God to heal my husband, allowing him many more years to see the amazing people our children are becoming.



Anna Patton said...

Such a beautiful relationship your children and you have. Many parents would walk through fire to have that. I know you already are walking through fire so you have earned it. Try to enjoy the love and wisdom that is coming to harvest right now in your children's lives. You and Stephen are what has shaped them into the the extraordinary people they are. What blessings of light and love surround you as you walk through the darkness of the unknown. Many prayers and love from people you don't even know are lifted daily for your family. HE is with you always.

Angela Ash said...

You all are continually in my heart and prayers! You have a Beautiful family! You and Steven have two very Beautiful children inside and out! God Bless you all and a lot of people are PRAYING HARD for these treatments and the success of this next transplant.

Ben McGuffin said...

We are praying faithfully for you all but mostly for Steven's complete healing in Jesus name. Lord bless you with even more faith and love. With our best prayers forward! Ben and Lanai McGuffin

Linda Henson said...

I have never had any doubt that Steven won't beat this and that you would be there by his side all the way . Your kids have amazed me. Lakyn has the faith and encouragement that is unbelievable . Blake has come along so far. This shows me that you are the one that has taught them about faith and God. Your whole family has been changed by this and I know it has brought you all closer together. God has a plan and I pray every day that plan gives you all many years together. Love you all !!!!

Patty Macdonnell-Smith said...

I know it was hard, but what a blessing for Laykin and you to share that special time together. It takes you aback, I know, when your child is the strong and supportive one when you are in need. God's blessings come in so many forms. Remember to look for them even when you are so troubled. Steven and all of you are in my prayers. When you do get back to St. Louis, I'll bring my trick dog over and give you all a show!!