When You Take Two Steps Back

Steve McKinionUncategorized13 Comments

Recently, Harrison has had a major setback of sorts. From the beginning he had struggled taking medicine. He still cannot swallow pills, despite working with a specialist. We’ve tried EVERYTHING.

Gleevec

Gleevec is the "miracle drug" that is both Harrison and his cancer hate to see coming

The past few days have seen an increase in Harrison’s struggle with the medicine, particularly the Gleevec, which is the most important drug he takes. We have had to crush the pills since the beginning, against the advice of the maker and pharmacist [crushing them causes puts us as risk, but we do it for him].

We’ve put them in rice crispy treats, peanut butter, ice cream, chocolate syrup, maple syrup, and fruit juice. Usually Harrison does well for a week or so with our “new” method, then begins to vomit every time he takes them. In the past several days, taking just the Gleevec has taken over four hours, taking a great toll on all of us, him especially. Most days he throws up the medicine three or four times before finally keeping it down. The shortest amount of time taking medicine requires is two hours, and several re-takes.  More than once we’ve used five days’ worth of Gleevec in one day.  At $4500 a month, our insurance company can’t be happy with that.

I tell you this part of our story to ask you to pray for two things in particular.

First, please pray that Harrison will learn to swallow pills. Even the specialist is struck by his determination to NOT swallow them. And until he does learn to swallow them pray that he’ll not make himself sick, subjecting himself to multiple, painful episodes every day.

And second, pray for strength for Ginger and me. It’s hard enough knowing our son has cancer, and that his cancer is a rare, previously untreated kind.  We have no way of knowing what odds he has of remaining in remission: there is currently a 0% survival rate for those kids who have had this.

But daily it’s painful to watch him get so worked up in anticipation of taking medicine that he sometimes gets sick before even taking it. It pains us to watch his struggle. And with that, there is also life to be lived, and jobs to be done. I can’t leave my wife with the two- or four-hour task of giving Harrison his medicine. And it is hard to explain to people how taxing that process alone can be. There is just so little “left in the tank” after four hours of fighting with medicine and watching Harrison become so violently ill.

I start every day with things I simply have to get done, and find myself either too occupied or too exhausted to get to them. I know it is hard for people to understand the toll caring for a cancer kid takes on a family; I honestly never understood it.  There are two teenagers who have very busy and demanding lives.  They both have sacrificed so much, and are willing to continue to do so, but their needs far outweigh their wants.

It’s nearly impossible to sit down to write a book, or make a phone call, or visit with a friend after a morning of pain and heartache.  It’s not a matter of will, but one of time and energy.  When medicine starts at breakfast and doesn’t end until lunch, the day is basically gone.  And so is ones energy.  If nothing else, I’ll be a more understanding man after all of this.

One day, this will all be better. But until then, there is another spoonful of poison-laced peanut butter I have to try to force into my son. Because if he doesn’t keep it down, the cancer returns. And I’d rather not re-live these last six months.

And if I don’t return that email promptly, please bear with me.  I’ve never been good about that before, quite honestly.  At least nowI have a good excuse.

Thanks for being to kind, and patient.  Most importantly, thanks for your thoughts and prayers for Harrison.  He’s in the battle that really matters.

 

13 Comments on “When You Take Two Steps Back”

  1. Steve and Ginger,

    You have probably tried this but just in case you haven’t. I make smoothies every morning and throw in my vitamins because I hate swallowing them. One in particular Glucosamine tastes like shellfish and I have worked hard to come up with a formula that would eliminate that flavor. Here’s my recipe:

    Frozen blueberries 1/4 cup or less

    Fresh or frozen strawberries 4 or 5

    1/2 banana

    1 cutie orange

    1 tsp sunbutter or peanut butter

    1/8 to 1/4 cup of vit. water or gatoraid berry flavored

    2 tsp vanila yogurt optional

    Make sure you blend it well to get a smooth consistancy.

    Hope this helps. We continue to pray!

    His Peace,

    Allison

  2. I am so sorry to hear about Harrison’s struggles. Poor baby; I’m sure his reluctance to swallow pills is a control issue with him. Children (and adults) often develop adversive behaviors as a means of control – good or bad. Harrison probably feels he doesn’t have control over anything in his life right now. I understand that having gone through cancer myself. I will pray for all of you today.

  3. Steve,

    I have prayed along with you guys since reading Matt Chandler’s re-tweet last december. One thing that worked for us in having our children take medicine is to eat something ice cold before trying. It kind of numbs the throat area, making the gag reflex less intense. We’re still praying daily!

    Tom P

    1. Tom, that is a great idea. One I hadn’t previously considered when trying to give our 4 year old her chemo pills. There are also losenges that will numb the throat (usually used for sore throats) as well as mouthwash.

      Praying Harrison can overcome this.

      Marlaina

  4. My heart is heavy after I read this post. When I was a young child I was the same as Harrison, I refused to swallow pills. My mother would have to chop them up and put them in a sugar solution and I fought every inch of the way. When I think back to those days I really don’t undrstand why I struggled so, but I did. I want you to know that Harrison and your entire family are in my prayers. I heard about Harrison from my daughter in law, Tina Bredbury. There is not a day that goes by that I do not think of your family and how difficult it most be.

    I want you to know that I believe that Harrison is already healed. He was healed 2,000 years ago on the cross by Jesus Christ. I know that your family knows that and stands in faith knowing that all this some day will just be a memory.

    I am no stranger to cancer. My father died at the age of 38 when I was just two years old. He had colon cancer. Then my mother had breast cancer, I got breast cancer, my identical twin got lymphoma and my older sister right now is in the fight of her life with small cell lung cancer. Cancer stinks and satan can not win this fight. We are christians and covered by the blood of Jesus. He is in us, He who is in us is stronger than he who is of this world, Every morning I take communion, I take the bread for my healing and the blood for salvation. We are healed. I have a great book by Joseph Prince and communion. If you are interested I could mail it to you. When my identical twin sister was completley healed, she had stage 4 grade 4 in bones and every organ of her body, she asked God what was the difference and she clearly healed Him speak, communion. I know Harrison can’t handle pills but he will be able to handle the matza bread and grape juice. keeping you in ny prayers, in Christ Jesus, Cherie

  5. Steve & Family,

    I’ve been following Harrison’s story and came across it via twitter.

    I’ve been praying for you guys and will continue to do so.

    My 28 year old brother has been battling brain cancer for nearly 3 years and has been living with my parents since last july when he had a re-occurrence. I know what you mean about how things are taxing and mentally and physical worn out. my heart aches for your family and for my mother who is my brothers primary care taker. I pray for you and your wife. for peace, wisdom, strength, and guidance. I am also praying for Harrison, that he’ll be able to take the medicine needed and take it easily. I know how the tiniest details can make all the difference.

    Continuing to pray for Harrison and trusting in God for him.

    Cathy Webb

    Oregon

  6. So sorry to hear of the struggle with meds. My last whipping from my daddy was when I refused to swallow a pill. Reactions are repeated. I still lose my Benadryl or calcium pill, but my conditions are not life-threatening. Be praying.

  7. Just wanted you to know that I regularly lift you guys up in prayer. Thanks for being so public with the struggles, it enables me to pray more specifically. Know you are being prayed for today! God Bless!

  8. Praying for you all during this trying time. I cannot imagine the hardships you face daily. I pray that Harrison soon will be able to swallow the meds and keep them down. I pray that God will not allow the cancer to return. I am praying for strength, energy, comfort, and support for Ginger and you. I pray that Lachlan and Blakely needs will be met. Praying for you all that God provide for all your needs.

    Blessings,

    Anna

  9. Our whole church is praying for Harrison and you all. Thank you for your honesty and transparency. We will pray specifically for these things you have mentioned here. Love you guys.

  10. Hey Steve,
    Just a note to let you know, I hurt for you and Ginger. I can’t even imagine where you are, but I know that God is right there with you. I am here praying and hoping for God’s awesome will in Harrison’s life. I also am praying for you and Ginger that you both can walk through this with the grace and support of God. I love you all and know that God loves you also. Hang in there.

  11. My heart breaks as I read your story. I am a nurse and have had to try and get meds into someone who is not able to take them for various reasons. Sometimes the mind is stronger than we would like and can physically make us sick and throw up the medication. I like the smoothie idea, sometimes I make milkshakes for my patients to disguise the taste. I will pray for Harrison each night as I pray for Bryce. Sometimes life is not fair, but I do know that God is surrounding you all.

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