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

https://www.nationalmssociety.org/About-the-Society/News/Antihistamine-Shows-Evidence-of-Stimulating-Myelin

https://overcomingms.org/first-drug-shown-promote-remyelination/

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.