He Doesn’t Want to Die

Eli is the main character in this tragedy.  There is no denying that.  But as members of the supporting cast, we each have a part in this story.  Mine is a little unique because I find myself having flashbacks or triggers of anxiety to my own cancer treatment.  And sometimes I’m caught a little off guard as to when that may happen.  I am basically a rollercoaster of emotions.

Children’s Hospital is on the same campus as Froedtert, where I received all of my care, and we drive the same route.  Typically at about 124 & Capitol, a lump forms in my throat and I feel a small bit of panic in my chest.  A flood of lumped-together memories come flooding into mind and a general feeling of dread about going back to “that place”  takes over.  My heart starts beating a little faster and I get a little sick feeling in the pit of my stomach, knowing that Eli is about to go through hard things every time we walk through those doors.

Today on that familiar drive, it was just Eli and me. A few minutes in, I glanced back at him and noticed “the change” in his face.  This happens every single time.  I’ve noticed it from the beginning.  I wonder what he’s thinking, but he never wants to talk.  In the beginning, when we were going for all the scans, I would sit in the back with him and we would just hold hands.  Now I’m the driver and I can’t hold his hand.  He still doesn’t want to talk.  The spark leaves his eyes and his mouth turns downward.  He just looks sad.  Today we had an unexpected conversation.

Eli:  “Mom, did you know that there are things that can make you live longer?”
Me: “Like what?”
Eli: “Well, I saw it on tv.  Like maybe vitamins?  And it makes you live longer.  And not die.  I don’t want to die.”
Me: “I don’t want you to die either, buddy.  Are you feeling sacred about that?”
Eli:  “A little.”
Me:  “Ok.  It’s ok to be scared.  I’m glad you told me.  I want you to remember you have a whole team that is here to help you, right?  And right now, we’re going to get your chemo to help you get better.  Ok?  I will be with you all day.  And we can hold hands.”
Eli: “Ok.”
Me:  “Is there anything else you want to talk about?”
Eli: “Well, maybe I just want to be a bug when I die.”
What????  For the record, he does know that we don’t become bugs when we die and we are actually hoping to get to Heaven.  But, instead we kept it light and started talking about what kinds of bugs we would be if we had the chance.  (He would be a spider.  I would be a butterfly.)  And even though our conversation turned fun and silly, my heart was breaking into a million pieces because my little guy is in a situation where he has started wondering if he is going to live or die.

This is not the first time Eli has brought up death.  A few weeks ago when we were waiting for results before his diagnosis, he and I were reading a book when he casually asked me if all animals die.  When I said yes, he asked if all people die.  I said yes, eventually, all people die.  He matter of factly announced that he didn’t want to die.  I was really taken aback with this conversation (and honestly, a little worried.)  I wondered at the time why he was thinking about death?  It was almost like he knew something was wrong with him before we did.  And then, we had another almost identical conversation after he was diagnosed.  That time we prayed together and told God that he didn’t want to die and to asked God to take care of him.

When I was diagnosed with breast cancer, I was never angry with God.  Yes, I was often angry with what was happening to me and to my family.  But never directed AT God.  I accepted that this was a thing in our life but I had this unexplainable peace in my heart that all would be well.  There were moments when I was afraid, but overall I did not have fear.  It’s very hard to explain, but I just had this peace and an overall positive attitude along with surrender/acceptance.  (I’m not saying that this is why my treatment has so far been successful.  I’ve had too many friends pass away from breast cancer and too many friends have recurrences and I am NOT saying that my feeling or desire to live is or was any greater than theirs.  Cancer is dumb and unpredictable.  I only know that I had this unspoken conversation with God and I have this peaceful feeling in my heart that I will be ok – with whatever is to come.)

Maybe Eli is too little to have the understanding of these kinds of feelings or conversations with God.  So I have them for him.  I tell God that Eli does not want to die and he has an intense desire to complete treatment and restore every single cell in his body to total health.  Eli tells us he wants to be a doctor someday.  Whether he will do that or something else, I tell God that Eli sure could do amazing things in this world.  I pray that God is listening to the desires of Eli’s heart and, if it is God’s will, Eli will be restored to complete health.

Our bug conversation in the car lightened the mood, but once we arrived in the parking structure of the hospital, the quiet moaning and the uncomfortable shifting began.  And so did the questions.
Eli: “So…will there be pokes?”
Me: “No.  No pokes today.”
Eli: “Ok.  So, no pokes.  Only chemo.  And we go home tonight?”
Me: “That’s the plan.”  I now know better than to make promises.  (On the day of the dreaded bloody nose, I told him we were going for just a quick doctor check and not staying over at the hospital.  Well, that was a big oops.  We were there for 2 days.)

We parked the car and Eli rode in the stroller because the walk is too far for his legs, which are still sore on and off.  On the Skywalk between the parking structure and hospital, he loves to pause and look in the window of the pharmacy to see the color of the  “potion” that day.  Today was orange.

I knew he was perking up after the potion, because suddenly he was waving at passers-by.
Me: “That is so nice of you to be friendly.  You are probably making people happy.  Did you see how they are smiling at you?”
Eli: “I like to make people happy.”
Me: “You’re really good at that.”
My heart was happy and swelling with pride at how he can be so brave and strong when I know he is uncertain and scared.

We entered the Day Hospital for chemo and got settled in our room.  He double and triple checked with our nurse that there would be no pokes today.  Once he was satisfied, he began charming the nurses and entertaining them with his silly antics.  More than one person commented today on how they just love his laugh, how funny, and how smart he is.  I wholeheartedly agree.

We spent some time in the play area and were visited by my friend Leah and her daughter Mallory for a while.  Overall, the day was long.  We arrived at 8:30 am. and left at 4:15 pm.  He seemed “done” about 5 hours in.  He refused to nap all afternoon, but was asleep about 2 minutes after we exited the parking structure.

I, too, was exhausted.  It doesn’t sound like a difficult day, but it was just draining.  Dragging an IV pole across the Day Hospital for him to use the bathroom 6 or 7 times, the constant stream of people “popping in to catch us” and discuss some upcoming procedure (which always makes my head spin) or coming in to check in on him.  I have to encourage him to keep eating and drinking enough fluids to keep up his energy and flush out the chemo while also protecting his bladder, on top of interacting and entertaining him for 8 or so hours. I also knew I would arrive home to find 4 more children ready and anxious to have conversations or needing help with something or just wanting a piece of me.

And so, I did a lot of deep breathing on the way home today, trying to relax my aching neck and just calm down whatever anxiety I was holding.  But the tears came anyway.  I’m a rollercoaster, remember?  Maybe it happened because I glanced in the rearview mirror and saw him sleeping.  I just knew his body was exhausted.  My little boy.  So tired.  So brave.  Chemo coursing through his body.  He should have been at the zoo or playing outside or doing something fun today.  And yet, he made the most of what he has been given.  He charmed the nurses, asked all his good questions when people came in to check on him or draw blood or change his fluid/chemo bags, got to try out fun doctor/nurse tools like the lights used to look in eyes and ears (for the record, he said mine are clear.  His nurse, however, found Batman in Eli’s left ear and Robin in his right ear.) I just loved every minute of watching and listening to my little boy be funny and smart and brave.  My heart is so full and I am blessed by every second we spend together.

And yet, my heart aches.  I looked at him sleeping in the back and remembered my own feeling of going home after my treatments.  The odd sensation of chemo running through my body, not feeling “quite right” but dealing with it. Wanting to rest, and yet, desperately not wanting to miss anything.  Wishing things were different and wanting things to work out.  I wonder how he feels and what he thinks.  I wish I could take this all away from him.  I can’t.  I can only hold him, love him, and pray for him.

God, watch over and protect my baby.  Hold him close when he is scared or sad so he can know and feel your great love. I pray that Eli will tolerate his chemo well this week.  I pray for total healing.  If it is your will, may Eli experience complete health in every cell of his body before the end of this treatment.  Let this healing be evident by showing us healthy bone marrow during his biopsy on Friday.  We place our trust in you.  Amen.

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16 Responses to He Doesn’t Want to Die

  1. Anonymous says:

    Aunt Betty Dresselhaus and family are so sorry for Eli’s illness. You are all in our prayers.

  2. Kathy Kiss says:

    Jamie – We have been praying so hard for Eli and you and your entire family. I wanted to pass along someone’s number that has a son that was diagnosed at around 4 and went through the long road of treatment and now doing well. I will send you an email with their details.
    Sending love and healing thoughts… Kathy xo

  3. Rebecca says:

    Praying for you, your family, and Eli. You may not remember us but you and your husband taught our baptism class.
    The Beckers

  4. Theresa Koorsen says:

    Praying for your family

  5. Tracey Schuch says:

    My husband and I pray for Eli and your family regularly. Thank you for sharing your story. Your faith is inspiring?

  6. Megan P says:

    I am praying these beautiful words of healing along with you. You are such a good mom. Thank you for sharing the story of your family.

  7. Paula Perkins says:

    You are all in our prayers. Thanks for sharing your feelings with us.

  8. Beth Stauff says:

    Prayers for Eli, brave, strong and true!

  9. Michelle Jackson says:

    Sending lots of love and prayers!

  10. Bless your sweet heart

  11. Anonymous says:

    So many prayers coming your way❤️

  12. Carrie Williams says:

    Praying, hard.

  13. Karen says:

    No words but prayers often. Love you all

  14. Sue Farrell says:

    Oh, Jamie, being a three time breast cancer survivor I know the highs and lows you have experienced. Please know there is a world of people praying for all of you. Hugs~~Amy’s grandma.

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