Rob’s Story

Site created on June 25, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Here’s the back story:
In July 2018 Rob had what we now know as an “episode” or “exacerbation”. At the end of a CrossFit class Rob’s right foot went numb and he had trouble walking.  At the time we dismissed it as a pinched nerve or just the result of a really hard work out. The numbness went away after cooling down.  We assumed all was well until it happened again :(   During a walk around our neighborhood, nothing strenuous, a numb foot again.  I actually had to help him walk home as he was unsteady as he appeared to be dragging his right foot.  It was pretty scary and we decided that it was time to make an appointment to see the doctor.
August 3rd, 2018: Meeting with the Primary Dr.
We met with the doctor to discuss dizziness, blurry vision, eye pain, vertigo, headaches and the recent numbness in his right foot after activity, and curious about a bump on the side of his jaw that we assumed was an ingrown hair which hadn’t gone away after several weeks.  The doc asked lots of questions, seemed pretty calm, then suggested an MRI to “get an explanation for the headaches, dizziness, and vertigo”, and a follow up with dermatology to investigate that small bump on his jaw.
August 9th, 2018: Mayo Clinic Charlton for MRI on the brain.
Doctor called at lunchtime and informed us that it could be many things and the lesions found on his brain could be MS ( punch to the gut).... and he wanted Rob to return the next morning for another MRI of the spine and back.  Rob was working from home that day.  The kids and I were out of the house at the time he got the call from his doctor, he was home alone.  When I returned home I could see in Rob’s face that something was wrong.  He told me about the MRI results and the fact that it could be MS and that he would need another MRI the next morning. We both stood in the kitchen and cried.  What did this mean for us?  Our future?  Our family? We were scared.
August 10, 2019: Mayo Clinic Charlton for 2nd MRI on back and spine.
Another early morning at Mayo Clinic for another MRI (the lady actually remembered him from the day before).  After this MRI the doctor called again to inform us that there are multiple lesions on the neck and spine (likely causing numbness in the foot).  He then referred us to Neurology.
August 24th, 2018: Mayo Clinic NW Dermatology.
I went in to the dermatologist for them to look at my bump on my neck.  They removed the bump and they thought it was just a cyst and they would send it to pathology.  Dermatology called and explained that the bump on his jaw was the result of carcinoma that was growing in his neck.  Cancer was removed a few weeks later and no evidence that it spread beyond his jaw and neck.
August 27th, 2018: Met with Neurologist for the first time.
We headed downtown to the Mayo Clinic for this appointment.  The neurologist informed us that many people get misdiagnosed with MS because there are a few other things that look like MS.  We went through the MRI’s.  He confirmed it.... it was officially diagnosed as Multiple Sclerosis. There were tears at this appointment.  We discussed medication, future outlook, future mobility, and a lot of other things that are a blur because they are things that no one wants to discuss, or know the answers to.  A lumbar puncture further confirmed the MS diagnosis.  Multiple Sclerosis is a disease of the brain and spinal cord.  Rob’s immune system attacks the protective nerve sheath which will make it difficult for his brain to communicate with the rest of his body.  He will gradually develop more symptoms for the rest of his life. 
There is no cure for this disease..... BUT!!! There is a way to halt the disease!! It’s called HCST! HCST (Hematopoietic Stem Cell Transplant) is a procedure where Rob’s own stem cells are harvested and treated with the goal of restarting the immune system after the faulty immune system has been destroyed with chemotherapy.  Following treatment, Rob will age normally and not be a prisoner of this disease. The treatment is safe and performed regularly around the world.  

Rob met with Dr. Burt at Northwestern is Chicago to see if he was a candidate for the trial study.  Dr. Burt accepted Rob for treatment under the condition that he have his spine fixed with surgery.  X-rays showed spinal stenosis and deterioration between C5 - C-7.

April 2018- Rob underwent spinal surgery at Rush university medical center in Chicago.  A lot of the issues he had were solved with this surgery!  Dizziness, numbness, headaches all went away!  After surgery he will recover for 3 months, stop his MS medication to flush his system and then he will be ready for HSCT! 

Newest Update

Journal entry by Beth Curtin

Rob got word this morning that his white blood cells were at .2 today!!  They were waiting for them to rise above 0 because when they did that means that the medication and treatment he has been receiving has been successful at tricking his body into creating new white blood cells!!  MS free white blood cells!!  MS FREE WHITE BLOOD CELLS!!  Rob’s body is producing healthy, clean white blood cells!  We are still trying to process this emotional journey!  Since Rob is showing signs of success with the treatment Dr. Burt thought that tomorrow would likely be the day he was released and the Nurse Prariotioner would be by at the end of the day to chat.  I flew to Chicago today knowing Rob would be released in the next few days and planning to travel home with him.  I checked into the hotel and got up to the hospital around 3 pm.  It was around 4:30 when Kate, the Nurse Practitioner walked in and told us we were discharged and free to leave!  What a great surprise!  Rob was so excited to get out of his quarantine cell of a hospital room that he has been in for 2 weeks!  They removed the line from his arm, which was amazing to see when it was out!  Then we packed up and headed out!  Rob has to wear a mask in public.  We went for burgers and milkshakes tonight, his first good meal that didn’t come on a hospital tray!  We walked around a bit, stopped and bought a container of purell and we are just enjoying the freedom!  Since Rob was part of a study he will have a 6 month follow up, and then a yearly follow up for 5 years.  He will have blood tests at home once a week to check his number and those will be sent back to Dr. Burt to monitor to ensure that he is still on track!
Northwestern was an amazing hospital!  I’m still in awe of Dr. Burt and his bottomless pit of a brain that seems to retain everything!  I’ll miss all of Rob’s sweet nurses!  Everyone took such wonderful care of him!  
We have had so many friends and family members reach out in support or prayer for us!  We feel surrounded by all positive things!  Thank you!   
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