Dream Scenerio Come True

I am a couple of days late in posting, but after reading you will hopefully understand why.

Friday – I am at work when my cell phone rings.  It is Chicago and my heart just about stops. It’s too soon, they changed their mind, insurance denied right away…. Well. It ends up that it was the billing department. They needed my social security so they could submit the request to insurance. OK, I calmed down a bit and went on with my day knowing it should be a month or two before I hear.

Monday AM – Rosemary has been running a fever for 2 days now and I make an appointment for her to see her pediatrician. Fran (my MIL) and I are driving her there when I get a call from Aetna. I return the call knowing that she needed some information. My caseworker (who is now referred to as my Fairy Godmother) said she was just calling to tell me that I was APPROVED FOR A STEM CELL TRANSPLANT! What? Fran and I burst out in tears utterly confusing this poor woman. I swear I made her repeat it like 5 times. Then she tells me that my plan will cover up to $10,000 in travel. WHAT??? My parents are in Las Vegas, yet I’m the one that hit the jackpot. How can this be? We get to the pediatrician and call my parents. Rosie tells them I was approved. They freak out, I freak out, Fran freaks out and now we have to go into the doctors office. We make it, but poor Rosie has a virus and it will most likely be a long week for us. I get home and call The nurse at Dr Burt’s office. She thought I was only approved for the evaluation. So she went back to the finance team and I sent her the approval letter. She calls back and says we are a go for pretesting. I ask the dreaded question… When will I know if I will be treated off trial (go right to transplant) or on trial (randomized.. 50% go to transplant after pretest and the remaining 50% go to the control arm and are treated with medication. The control arm patients will get transplant WHEN they show signs of disease progression). She said I would hear after pretesting. Both are good, but obviously, I want to get the transplant as soon as possible.

Monday Afternoon – The nurse calls back about scheduling. Tells me she is going to get me in ASAP, but needed some info about my medications. We talk for a while and I ask her if I pack assuming I am going right to transplant. She was confused and I said.. If I go to pretest and then get control arm, do I just go home. She says “Colleen, you are off trial. I thought I sent you an email”. No, but who cares. It is happening. I will beat this disease that has crippled me in less then 2 years. I am going to Chicago…. And probably soon. I asked her what timeframe we are looking at and she said she was still trying to coordinate so she would email me Wednesday. Dream scenario come true.

There is no medication washout period for Copaxone and IVIG, so I will get treatment right up to travel in the hopes I stay flare free. It is so surreal. I am overwhelmed at all the love and support my friends, coworkers and family have shown me. It is so comforting when dealing with the unknown. I am blessed to work for and with people who truly care about me and my health, that makes a world of difference.

For now, I wait for a scheduler as I recover from a very hard IVIG treatment this week. Those of you who are my adoption friends know, we can wait like no others!


Up until now…

Where did it start…. Truly, I have no idea. I know that I have had my fair share of stress in my life so to pinpoint the exact time I had my first MS symptom is virtually impossible. I can start when I was diagnosed. Most people. You talk to tell you it takes years for Multiple Sclerosis diagnosis. For me, not so much. To me it was a shock.

In June 2013, I lost hearing in my right ear for some weeks. I was given steroids by an urgent care who attributed this to an inner ear infection of some kind. A week later, I went to my loved ENT who said although my hearing test showed a definite decrease in hearing, my ear looked fine. He sent me for an MRI. That MRI showed multiple lesions in line with demyelinating disease. He referred me to A Neurologist who specializes in MS. I expected months of testing or other diagnosis, but by the end of the appointment, I was diagnosed with RRMS. I began my first injectable drug Copaxone within 2 weeks.

Very shortly after beginning copaxone I had a flare of optic neuritis which caused severe pain in my left eye and the loss of nearly all my vision. I started IV steroid treatment for this. I continued the Copaxone and in September of 2013 had another episode of ON. I went on IV steroid treatment again and within 6 weeks had a 3rd. At this point, the doctor suggested that I begin IV infusions of IVIG with the copaxone for 6 months hoping that would keep things at bay. I continued this treatment until May of this year.

After my MRI in June, My doctor and I discussed the copaxone/IVIG and decided to switch to Betaseron. I was on that from May until September at which time my blood results came back with elevated liver and kidney function. I went off the medication and had blood test done 2 weeks later. This showed that they were back to normal and I began Tecfidera. This is a fairly new oral drug that my body, could not tolerate. An ER visit, some morphine and a few miserable weeks passed before that medication was no longer an option for me.

All was not lost, because at the doctors appointment in September. We discussed a trial that is occurring in Chicago. It is in its 3rd level and the results have been amazing. The doctor in charge of this study was also it’s pioneer. He has done thousands of stem cell transplants and the ones he has done for autoimmune disease have shown remarkable results. My neurologist gave me the doctors information and I sent in a letter asking to be considered. Friday, I received word that they would like to see me in person for an evaluation to see if I qualify for the study. My father quickly ran all over town gathering medical records and CDs of MRIs and we fexexed it to Chicago. I now wait for my appointment.

The first and most important hurdle is to qualify for the study. This is where the prayers are needed. If I qualify, I will go for further testing and then I will be randomly placed on one of two legs of the trial:

Stem Cell Replacement leg -this is what we want. It is hard. It will involve chemo and long hospital stays, but I want it. I want my life back.

Control Arm – this leg is still good. I will be sent home to my amazing neurologist who will monitor me on the medications available to me as part of the study. Every 6 months to a year I would go back to Chicago and get evaluated. If I progress, I am switched to the stem cell leg. So this is still a great option.

So here is my very edited MS history until today. We now wait to hear from Chicago to see when I can go. I pray to God it is soon and brings us the answers to our prayers.


Colleen – my MS insomnia is nearly passed and I will hopefully see sleep soon.