First things first, to the death. No. To the pain.

This quote has been running through my mind since Eli had a bad pain episode a week ago starting about 3 am. He had texted me asking for water for his 3 am meds. I had been woken up by our 4 year old climbing into bed with Adam and me about 2:30 am, so when I got Eli’s text, I was already awake. When I went to refill his water bottle, I noticed he was in quite a bit of pain, in spite of the pain pump and having pushed the button.

After getting him a couple oral meds, I decided to call the on call hospice number. I explained to the nurse what was going on and she got to work getting the on call doctor paged to authorize an increase in the pain pump basal rate. Meanwhile, I sat with Eli, reading a book to him between oral doses of meds every 30 minutes, trying to manage the pain.

From the time that we were told that Eli’s cancer was no longer curable, they assured us that there were medications to make him comfortable and that he wouldn’t need to suffer. We admitted him to hospice because that’s exactly what hospice is supposed to do, keep him comfortable. However, as I sat with him hour after hour, waiting for their help, I felt powerless to stop his suffering.

This cancer fight is no longer to the death–the cancer will die with Eli, no chance for it to win. This fight is to the pain. Each thing it does to my son is another stab to my mother’s heart. It takes and takes and takes.

Running? Gone.

Walking? Painful.

Energy? Gone.

Breathing? Limited.

Swallowing food? Gone.

Laying down? Painful.

School? No more.

Pain? Constant.

Mobility? Limited.

Growing up? Gone.

A future without cancer? Not in this life.

It turns out that the number they put into their system for the doctor on call was one digit off. It took three hours of excruciating pain to get a nurse here with the doctor’s authorization to up his pain pump dose. Not acceptable. A plan was devised to enable me to adjust the meds under telephone supervision, in the event of another situation, but now they want to take away that safety net.

Not only am I heartbroken and feeling helpless against the onslaught of this disease, but my brief ability to have greater control over Eli’s comfort is being threatened. It feels like we’re fighting cancer and the system that is supposed to bring him comfort, all at the same time.

Now, if only we didn’t have to deal with plumbing leaks in the laundry room and kitchen, too, not to mention the vehicles that need fixing. We finally got the broken thermostat replaced, but it seems that houses and cars are a source of never ending repairs.

To the pain.

13 thoughts on “First things first, to the death. No. To the pain.

  1. lloyd and Rochelle augustine

    Thanks so much for sharing some of what is going on with Eli. Again, I just can’t imagine how difficult it must be dealing with all it takes under such circumstances, but also trying to live a somewhat normal life. I am sure the latter is impossible!

    Our thoughts and prayers are with you and your family!!

    Love you, Mom A

    Liked by 1 person

    1. Avery Booth

      i am so sorry it’s gotten this bad. that kiddo is something special and too pure and good to have to go through this. eli and the whole family is in my prayers every day. i know i’ve only met a couple of you in person but i love all of you and pray for each of you daily. keep going strong, you have made it this far and are handling this difficult situation better than most. 💞 once again, i know you all don’t know me well but if you need anything or i can help in any way please let me know!

      Liked by 1 person

  2. Carolyn

    Others have far more eloquently expressed their support and concern than I can. We’re sorry for the crucible you are passing through. So much love to you, Eli, and your family.

    Liked by 1 person

  3. Juleen Clift

    My dear Elaine,
    Wish I could do something to help. I will continue to pray for comfort and peace to be with you and the family as you continue to love and care for Eli. With love, Mom

    Liked by 1 person

  4. conniewebb1msncom

    When you pray, “Oh God, they will be done”, do you feel you should release Eli from this current life of pain? He has fought such a tremendously brave fight. Of course, I do not intimately know your experience, but there is something about you letting him go, so he will be able to also let go, if it is God’s will. Sending you my love and hoping for the comfort and peace that only the Savior can give.
    Connie Webb

    Liked by 1 person

  5. Mike and Tami Lish

    We are lost for words! We love Eli so much and can’t understand why such a beautiful spirit is having to go through all of this! We have followed all of your posts and are just devastated! God must have a special purpose in mind for Eli! Unfortunately, we don’t understand why such an awesome person has to suffer with such pain! Our prayers are with Eli and your family! We just have no idea what to say! So sorry!

    Liked by 1 person

  6. heathingolden

    You are now and will ever be an unparalleled Mom. If there were more to be done you would have found it and already had it done. You are a fierce momma bear who advocates for and protects each of her children. I love you, Adam, and each of your children. May the veil be thin. Eli surrounded by angels. May the Holy Spirit of Promise bring you each a measure of peace. That being said I acknowledge that your desperate days are not at an end. Anytime you may feel that you have reached out too much–I am here. If you have miss placed my number because of the pace of time and life, I can call the number that I have. I will wait awhile to give you time and space. You do not need to wait if I am needed or even if I am not. Leave a message if I can’t answer. I will call you back. You can count on that.
    Michele Ryals

    Liked by 1 person

  7. Ella Forsyth

    I love Eli from the bottom of my heart. He’s taught me more than a lifetime of how important family is and it’s helped grow my testimony so much. I love you Eli you’re such a blessing in my life. I miss seeing you every day 💗💗💗

    Liked by 1 person

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