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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?
There was a second name on the clinical trial list and in one bold stroke I sent off a much-labored over email outlining my husband’s situation. Even as I clicked the send button I wondered if I would receive a response. Fifteen minutes later, Jason came to me asking me about an email he had just received – it was from Northwestern Memorial Hospital – asking him to complete many medical forms and send medical records which we did via overnight mail. We were soon asked to send in two years of additional records, but waited three months to do so. We prayed every night asking for help – we wanted to be sure we were on the correct path.
After successfully completing his evaluations, Jason has now been accepted into the program at Northwestern. Even with insurance, he will have many uninsured transplant-related expenses such as:
co-pays and deductibles, travel and temporary relocation hosing to be rear to Northwestern for at least seven weeks, along with return travel and testing after six months.
To help with this financial burden of Jason, he may apply to receive assistance from HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Southwest Stem Cell Transplant Regional restricted Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider making a donation today and click the DONATE NOW button.
Thank you for your support!
Lindsey Maestas
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
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.
In one month, Jason will leave to Chicago. Time is flying pass. Good news, he is doing pretty darn good considering. It is truly inspiring how many people our helping us through this journey. Even though, my work load will be crazy in the next few weeks and months I have encouragement I will be able to make it.
Jason has received his second round of steroids. Hoping this will help bridge the time to the procedure. We are trying to get ready as much as possible. Making lists of items that we need to take or pick up prior to the procedure. Wow, it hard to believe it is less than two months away. It is coming quick and before we know it Jason will be there.
One and half more months before Jason leaves for Chicago. He is getting weaker and he will before he has a chance to beat this disease. But, he is doing good and we look forward to the upcoming months.
Gabe Beckstead is having a concert on August 24, 2015 at the Metro . Tickets are 10.00. He has offered 100% of the proceeds will be donated to our fundraiser. The Metro is located 615 W 100 S in Salt Lake City.
Wow, very impressed with the new doctor. He stated that Jason will be his 7 patient to receive this treatment. He was so excited and is counting down the days with us until Chicago. Home health is coming to our house today to start the 3-day treatment of solu medrol. We are so blessed by everyone's contributions and support.
We are excited two more hours before leaving to the new nero.
A new neurologist appointment scheduled for 8/7. YEAH!
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)
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
Hey buddy, I just did the 25$ but I hope it can help. Sending good wishes your way!
Chad Laflamme
Hey Jas! You got this homey ...
Nauni
I love you Jason! Match my $100 or better yet double it everyone.
Gabe Beckstead
P.S. Match my $100 dollars.
Joe Corey
Hope my little contribution helps you my friends. I challenge all of our old school friends to match this.
Joe Corey
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Jason Maestas
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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