HSCT for Jodie! Farewell MS!

For: Jodie Bissig
Laton, CA
Organizer: The Stevens & Bissig Families
HSCT for Jodie! Farewell MS! (Jodie Bissig)
of $20,000 goal.
Raised by 83 donors
52% Complete

The Story

Thank you for visiting my page! My name is Jodie and I live in Central California with my husband Russell and our two kids, Mia (11 1/2) and Matthew (8). We are fundraising for the costs we will incur as I particiapte in a clinical trial for MS. Here is my story:

My health problems started with vision loss, which to a mother, photographer, and artist, was terrifying enough. Then came the words “multiple sclerosis.” Multiple Sclerosis means “many scars.” For unknown reasons, my body attacks healthy nerves and tissues and leaves behind damage called lesions. My legs are incredibly weak, I feel off-balance, I am exhausted beyond words, and it’s a challenge just to get through the day.

And then things got worse: my medications weren’t working. I’ve had one relapse after another and my disease is aggressive. I’m now on the strongest drug available – one my neurologist calls “the big guns.” But big guns come with big risks and big side effects. Most patients can only safely be on this drug for a few years… and I’m only 37 years old!

Even with the medications, I am struggling. What do you do when you feel your life, your independence, and your movement, slowly being taken away?

Me? I am participating in a clinical trial. Clinics all over the world are pioneering a stem cell transplant (HSCT) that has the promise to stop MS. Essentially his treatment will reboot my faulty immune system using chemotherapy, and then rebuild it using my own stem cells. Patients who have had this treatment no longer require MS medication and the majority have NO NEW MS symptoms!

So here we go! I need strength and support and financial help to fight harder than ever to overcome this dreadful disease and be here for my daughter and son. Your donations will help with medical expenses, travel costs, and will help keep things running smoothly at home while mommy is away getting tests and treatment.

Thank you for reading my story and thank you for your donations. I am humbled and honored by the friends and family who are supporting me in this biggest challenge of my life.

Fundraiser Updates

Posted on January 2, 2018

Posted on January 2, 2018

I have so much good news to share! At the beginning of December, I got my MRI results - no new lesions! This is the first time I have ever (ever!) heard these words.

Then, on December 22nd, I received an even bigger Christmas gift. I won my insurance appeal! Insurance has denied me twice and this was the final appeal and handled by a third party independent review and the doctor saw an obvious medical necessity for me to have the stem cell transplant! Yahoo! I am working with Denver to schedule my pre-testing and transplant for the Spring! I will post again once I have more of the details worked out.

Posted on June 30, 2017

Posted on June 30, 2017

Denver said yes!

We visited Denver last week and had a nice time exploring the city and the Rocky Mountains. We met with the staff running the clinical trial and the neurologist, all of whom were very kind and took their time with the exams and our questions. 

And today they called and said I am eligible for the stem cell transplant! This trial is in phase II, which means no randomization and no nonsense, just my CURE - coming soon! I will now connect with a transplant coordinator who will get me scheduled for pre-testing and begin the process of renewing my insurance approval (it has unfortunately expired). We are hoping and praying this will be an easy process and I can begin treatment in the next few weeks/months. 

It’s been an exciting day! Today is actually the 15th anniversary of the day my husband proposed to me, so this must be a good day to say “YES!” 

Posted on May 26, 2017

Posted on May 26, 2017

A lot has changed since my last update. Chicago wanted me to come back for a re-check in June before my next doses of medication. I thought and wondered and prayed about it for several weeks before deciding not to go. I’ve gone there FIVE times and I am no closer to getting the treatment. I just don’t feel like a re-check is going to make any difference at all and, quite frankly, I’ve lost confidence in this process. It’s an expensive trip – not just financially, but emotionally and physically, too. I told them I was declining the “offer” of re-testing and would stay with my twice per year schedule, as required by the trial.

In the meantime, I decided it’s time I look at some other options. There is a similar clinical trial taking place in Denver and Seattle, although I had been told meeting the criteria was very difficult. I figured it wouldn’t hurt to apply. So I did! They almost immediately responded that it seems I am eligible. They requested my medical records from alllllll of my doctors, reviewed those, and called and said they’d like to see me for an evaluation. Everything on paper looks like I am a good fit. The best news of all? This trial is in Phase II, which means if I get in, I will get the stem cell transplant (no risk of getting control group again).

They’ve scheduled me an appointment in about three weeks, so we will fly to Colorado and see if I’m eligible. I haven’t quit Chicago’s trial, and I’m struggling with guilt from the idea of giving up. But I need an easier option. I’ve felt like every step of the way with Chicago has been a struggle and a battle and they’ve broken my heart too many times to count. Denver, so far, is feeling much easier and like a much better fit.

I’m not sure where exactly I’m supposed to end up, but right now, I’m hoping for some answered prayers and an easier path. Thank you for all who continue to support me and pray for me. I hope I will have some wonderful news to report after my visit in Denver in a few weeks.

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