Three years ago, I married my 7th grade crush. Two and half years ago, my husband was unexpectedly diagnosed with Multiple Sclerosis (MS). During his first attack he lost sensation from the waist down. I should say this was his first attack that we knew of once he received his MS diagnosis. For the past two and half years Jason has been in and out of hospitals, gone to many doctor appointments, has had various labs tests and infusion treatments and many wonderful two to four hours of MRI’s.
I started researching any therapy that would help my husband. I started with www.clinicaltrials.gov. I was so overwhelmed. I didn’t know how or who to contact. I wrote down two names of stem cell research projects that were being conducted for MS. This thought was pushed aside until February 2015 when I renewed my research efforts. To my surprise, the two stem cell trails that I had previously read about were still being conducted. I called one of the names listed as a trial contact to learn more about the process only to be told that the procedure would cost us $15,000 and might have to be repeated in five years. Not quite the answer I was hoping for. My head was full with many thoughts. There are so many “what ifs” a caregiver would have if given the opportunity to save their loved one – what if I could help get rid of my husband’s pain?
Updates (9)
November 29, 2015
Hi,
I hope everyone had a fantastic Thanksgiving with friends/family. We had a great time. During the last two weeks, I have been slowly getting ready for the second part of Jason's procedure. Last Saturday, I made 20 frozen crock pot meals for Chicago. I found a website that stated 20 in 2 hours. It took a total of 5 hours if not longer. About the 3rd hour, Jason said to me “only someone who really loves someone would do this for them”. I am hoping this cuts down on eating expenses and provides a break from eating out and hospital food.
Jason hasn't left the house every much, trying to save himself from any sickness. He was able to get out for really the first time yesterday for an hour or so. I admire him that he is able to stay inside for so long without driving himself crazy. We have been trying to slowly decrease his pain medication. In doing this he has been sick for the last three days taking pedialyte, pepto-bismol and imodium a-d. Either it is withdrawals or all the dairy from Thanksgiving. Praying he is not sick.
Been preparing for Christmas when Ezekiel comes out to visit. We are both so excited and hope that he is able to make it to Ohio. PJ's and stocking stuff checked off of list. One thing this disease has taught me, there is never enough planning you can do. This is because you don't know what tomorrow will bring.
This Tuesday we will be heading back to Chicago. The protests in Chicago appear to be over and the city is back to normal at least the news in Ohio is no longer reporting about the protests. Hopefully, the weather won't be a hurdle for us on our way back up. There is a snow and cold weather being reported for Chicago the night we get in. The weather alert had North Lake Shore drive flooding with 8 to 15 ft. waves. Wow, I found that interesting to find a lake could have that big of waves. That just demonstrates how big of a lake it really is. Wednesday Jason will go in and get his pic line in his arm and Thursday he will be admitted. He will than start 4 days of chemo.
We look forward to returning and miss family, friends and (our dog) Izzy.
Enjoy each and every day. Live life to the fullest.
Love,
Jason and Lindsey
October 14, 2015
Jason leaves for Chicago on Saturday. I will leave the next Friday. We are super excited and at the same time nervous. We are very blessed to have loving family and friends.
Guestbook
October 24, 2015
Hello Jason & Lindsey, I clicked on a link from Twitter and saw your page. I had a stem cell transplant with Dr. Burt at Northwestern over 4 years ago for Devic's Disease. It was the absolute best decision for me. It's a difficult journey but so worth it! The team there is amazing. I just wanted to send you some words of encouragement from someone who's been there. I know how scary it can be for the both of you but you are in great hands. It's not much but since I know the costs involved, I hope my little donation helps. Prayers to you both and sending you love
Janelle (SheSingsSweetly)
October 14, 2015
Jason I am so excited for you to have this opportunity at life. Know this many prayers and thoughts are being offered for you and Lindsey. may God bless you and your family. I am proud to call you my friend.
John Perkins
August 24, 2015
Hey buddy, I just did the 25$ but I hope it can help. Sending good wishes your way!
Chad Laflamme
