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Another New Approach

Another new approach is where we found ourselves at the end of Zine’s MRI and doctor’s appointment.  There are many mixed emotions over this.  Life with MS never goes away we are discovering.  Even the best appointments are reminders that we live with a significant disease.

Mixed Emotions

Grateful.  Grateful that we do not have to endure chemo this year!!!

Skeptical.  Skeptical that just a brain MRI reveals complete truth about chemo progress.  Zine’s C-spine is where we have always seen the most lesions, yet they based the chemo/no chemo decision off of a brain MRI without a look at his C-spine.

Apprehensive.  Feeling apprehensive about a new approach that has not been researched much.

Relieved.  Relief that Zine’s body doesn’t have to go through a chemo that takes almost a year for him to recover from and that our family doesn’t have to feel the stress and weight of that season again.  Relief that the new approach isn’t week long chemo sessions.

Grieved.  Grieved that even when we leave an appointment with a bit more positive feel, the reality is Zine still has MS.  He still has a disease that is significantly affecting his body and our lives.

Hopeful.  Hopeful that this new approach of treating MS is a positive change with long-term results.

I’m sure I could continue this list of mixed emotions.  However, I think I have given you a glimpse of the fact that there is quite a bag full of different feelings we are experiencing.  We want to be positive and excited over no chemo and we are.  However, the excitement and positive emotions are mixed in with doses of emotions that counteract the enthusiasm and positivity.

Another New Approach

New approaches seem to be our life.  When Zine was first diagnosed with MS, Zine gave daily shots of a drug called Copaxone.  At that time, the medical staff was telling us about this new drug coming out that was a miracle drug.  That drug happened to be called Tysabri.  Zine did switch to monthly Tysabri infusions for three years before another approach entered the picture.

The next approach was chemo every three months.  A drug called Novantrone.  This entailed a port, an oncologist, and smurf juice chemo every three months that left Zine weak and sick and bald.  Then came another new approach.

This approach was another chemo called Lemtrada. They have done much research on this drug since Zine first took the chemo.  Many, many are receiving this chemo because it is the next new miracle drug.  And Lemtrada has slowed the progression of MS in many, Zine included.

Now we encounter our next new approach.  An antihistamine drug that has proven to be of some benefit to mice in the process of remyelination. This medicine is in clinical research trials right now in humans.  However, it will be four years before the results are known.  The good news is it’s not a brand new drug.  It has been around, just not studied much in humans as it relates to MS.  I have done some research as you can imagine since coming home. Zine, being the intelligent person he is, already knew of this drug and its studies. If you are the kind of person who likes to details, here are some links that discuss the drug.  I gave you links that people like me can read and understand.  Zine reads articles that my mind can’t even grasp!

Research Links

Jumping Ahead of Research

Given that Zine’s disease is so far advanced than many with MS, the doctor felt that it was worth going ahead and taking this medicine and not waiting the four years to see what the results were.  Zine will be taking the drug at a higher dose than typically prescribed with no long-term research on the health impacts it has.  As Zine brought up a question last night, will being on an antihistamine all the time cause frequent sinus infections.  Other questions have arisen since we’ve had time to think.  I’m sure there are no answers yet to those questions.

I understand the doctor’s approach and am super grateful that we have a doctor that is on top of what is going on in the MS world.  I’m super appreciative that every patient is a battle for Dr. L.  His ultimate goal for each of his patients is first to make you feel better by treating symptoms and second to find a cure. However, if you think we put all these drugs into Zine’s body with no side effects, that would be wrong. As we have discovered with Chloe, drugs impact our bodies in many ways.  The emotional effect of going from one approach to another to another is just horrible for your emotional status.

Life with MS is a constant battle.

Zine and I both felt that our appointment was a positive appointment.  Trust me when I say we have had MUCH worse appointments.  We are super duper grateful not to be repeating chemo this year, even if there are new lesions in his C-spine.  However, it was a reminder that despite all the different approaches, Zine has MS and MS is a constant battle.  We want a one time cure.  Take this drug, and your problems will melt away.  However, what is becoming more and more evident is that our battle with MS is going to be one drug to the next new drug to the next new drug.  This approach to that approach to yet another approach.  To think that this will be the last new drug Zine takes would be faulty thinking.  This is just the next approach.  There will be more.  Maybe one day, there will be a cure for MS.  Maybe there will be the one drug fixes all approach.  However, for us, it’s a battle every day and it’s one approach to the next.

We are called to trust God one approach at a time.

Our lives are NOTHING like we expected.  Expectations for what our children’s lives should look like are nothing like we thought.  Our future is unknown.  Will there be a cure eventually for MS?  Who knows.  Will the drugs have detrimental effects eventually on Zine’s body?  Who knows.  Will we have to do chemo again?  Who knows.  Will Zine develop secondary cancer due to the chemo he’s already taken?  Who knows?  Will Zine ever feel that he has a purpose in this life?  Who knows.  We live our lives trusting God one approach at a time.  Trusting God to direct Zine’s physician and trusting God to direct our thoughts as well.   We trust that this approach is a right decision for us.   Continuing to trust that God is always at work in our lives to prosper us and not to harm us to bring us a hope and a future.



Wife of 20+ years. Mom to 3 children. Love sharing my life with weary hearts so that we can know the One who is Good, who is in Control, and Whose strength is made perfect in our weaknesses.

This Post Has 5 Comments

  1. Beth Edwards

    Is this a trial that Dr L is conducting or helping with. If so he will know the trends, even though he doesn’t know the results. The times that I have had a brain MRI- it has been both Brain and c-spine. Did you ask , why they didn’t do both?
    Zine has a purposeI have seen him work so well with teens. I think there is a place for him to help there. He can be in a wheelchair and still listen to teens. Thats what they need , people to listen to them Where I don’t know- Maybe with foster or at risk teens, or those already in the system

    As for Chloe. I remembered a couple day ago. That a friend of mine had a daughter that was having migraines that hospitalized her. There were other issues too. Her parents researched and decided to try Gluten free. It worked- no more migraine and she grew 2 inches in a year (at 15)- She did get a stress fracture because she grew so much.
    Prayers for all of you

    1. kksmith8694

      I am super hopeful that going gluten free helps her migraines. There’s a whole list of symptoms that I am super hopeful this helps. I have been saying for years, there is something going on no one has discovered that is going to tie all these things together. I am so hopeful this is the missing link!!

    2. kksmith8694

      Oh, and no it’s not a clinical trial Dr L is involved in. I didn’t ask about the MRI why? I should have asked since it has continued to bother me.

  2. Stephanie

    This is exciting but I’m hearing what you are saying Karen. I appreciate how you give us the full thoughts… It’s easy to hear that it’s a new medicine and get excited about the possibilities. However, you’ve been there and seen the other side — the side effects, emotional effects, and also the disappointment when it’s not what you expected. I pray God will use the medicine in a mighty way and again am so thankful for your family’s openness to share with the rest of us❤️

    1. kksmith8694

      You get it my friend! I felt so terrible that I wasn’t just overjoyed that we weren’t doing chemo this year. After three or four years of chemo, to have a break should be super exciting. Instead, I had trouble rejoicing in that fact. I’ve been burned about getting excited about new drugs. I’ve been there and done that more than once. I do believe God could work a miracle with or without medication. I totally believe that. I have had to learn to balance my faith that God could choose that with the fact of my current reality! Zine is only on a half dose of the medication and we up it next week. I have already seen side effects. I have my concerns for sure. However, still trusting in the next step and will walk this road for a time anyway. Hope you’re feeling better!

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