Keith set up a page on giveforward.com where we asked you — our family, friends and community — for your help. Your gracious, abundant response absolutely blew us away. We are forever and deeply humbled by your love — thank you.
Below is the information from the Give Forward page, from September-October 2013.
After dealing with an aggressive case of Multiple Sclerosis for 5 years, my beautiful wife Emily will get a stem-cell transplant this Fall.
In March 2008, my then 20 year old fiance Emily woke up one morning with no feeling in her right leg. We went to the emergency room and then iNova Fairfax Hospital, where she was admitted for 10 days–during which the numbness grew up both legs and half her torso. After a week in the hospital with doctors, perplexed at such quick and aggressive onset of symptoms, suggested a few theories and sent her home. That was 3 months before our wedding. Then a week after our honeymoon, in June 2008, she had another episode and was diagnosed with Multiple Sclerosis. That was when the life we had imagined was rapidly altered, seemingly forever.
[MS is categorized as an autoimmune disease, where your immune system basically considers your own body an invader, and responds by attacking itself. There is no known cause or cure and no two people have exactly the same experience of MS, so the disease course looks really different from one person to another.]
My wife had an extremely aggressive form of MS right from the beginning. First it was the numb legs. Then it was numb hands and arms. Then vision loss and slurred speech. At one point she couldn’t walk, talk or see. This was all in just 2008. Because of the nature of MS, treatments don’t fix/heal, they only slow down the progression so it can be a bleak long term prognosis.
After the disease progressed quickly, in February 2009, we heard about a miraculous study at Northwestern University on the use of ones own stem cells to treat MS. Emily was a great candidate for phase 3 of the trial, which had shown to be very successful in treating the more aggressive cases of MS over the past 10 years, especially in someone as young as her. After months of doing everything we could, she was accepted into the study. But as part of the study, every patient had 50/50 chance to get the transplant. After spending weeks in Chicago preparing for the potential stem cell treatment, she was randomized to the control side. So we came home and Emily started the most aggressive and effective conventional treatment available. For a couple of years, this treatment showed fairly good results in keeping the MS at bay. Symptoms came and went, but there weren’t many extreme attacks.
In November 2012, after receiving this infusion monthly for 3 years, an antibody developed in her blood that meant she could no longer be on the monthly infusion due to a risk of a potentially fatal brain infection. Then earlier this year after being off the effective treatment for months, she temporarily lost her eyesight and ability to walk (naturally we got her a hot pink walker). The doctors at Northwestern asked to see her quickly because of a stipulation in the study that could allow her to cross over to the stem cell treatment side. She went through those tests in Chicago this past summer and the doctors determined that shed be a great candidate for crossing over. And If you know my wife, you know that she has kept a positive attitude towards all of this MS stuff. She has kept her smile, her encouragement of others, and positive outlook on whathas been given, rather than what has been taken.
On October 30, we will return to Northwestern and Emily will get the stem cell transplant in hopes of putting this disease into remission and giving Emily, and us, a fresh start with life.
Essentially, Emily’s body will be completely rebooted like a computers hard drive. The basic planis that she’ll get medicine to help her body produce more good cells, then high-dose chemo (4x stronger than cancer chemo) to wipe her immune system to nothing, and then reinfusion of her cells. Well be going the last week of October, and if all goes well, well be returning home around the beginning to middle of January. She’ll be mostly outpatient for the first few weeks, but then inpatient, in a special air filtration room consistently in December. As you can imagine, it is very risky to temporarily get rid of someone’s immune system.
There is some anxiety and some fear. But there is also joy and gratefulness for this opportunity. The people who have had this treatment are still showing miraculous results years later, so we are trusting that God is making all these things possible.
We cannot do this alone. As you might imagine, there are many costs associated with the season of life we have coming up. Praise God, the insurance company has covered most everything medically. (The total cost will be in the hundreds of thousands.) In addition, this past July, when we refinanced our house, we were able to cash out some money knowing that the possibility of this trip existed. We were also able to recently negate some of the cost by applying to multiple organizations that give money towards things like this. So we know that God is already providing. But even still, we will need almost $30,000 to make all of this possible.
Why $29,500? We have taken the costs that we know of, estimated the costs of the the rest, taken out what we have saved up, and $29,500 is as close as we could come to an estimate. It may be more or less, but for now $29,500 seems to be very close.
In addition to some medical costs, we need a certain type of room at a hotel next to the hospital for 2 months. For a few periods of time, Emily will be outpatient and need to be next to the hospital. Luckily, the staff has worked out a deal with people in our situation so we are getting a gigantic discount for staying 2+ months. Well also need groceries/food. Rental car and gas (well need one off and on). And anything else that comes up. Well also continue to have bills at home: mortgage; utilities; car; etc. I will be continuing to work as much as possible from Chicago so we will still have my salary to depend on for a chunk of these fixed monthly costs. Emily has enough vacation and sick leave built up that she will be paid through November. Because of the nature of an immune system, we may have to pay for some heavy duty carpet and air duct cleaning as well. But well cross that bridge when we come to it.
So at this point, we’ve done a lot of footwork and are trusting that through Gods grace and provision, friends and family, and prayer, that all of this will happen. Will you consider helping us on this journey? Can you invite others in as well? Please share with your friends, families, churches, communities, Facebook, Twitter, etc. Also, if you’d like to give to us directly to avoid the service charge that well incur, please email email@example.com and well let you know how!
We are truly humbled and thankful for all of your support, prayers, friendship and love.
Keith & Emily
ps. Here is the video we saw when initially hearing about the study:http://www.cbsnews.com/video/watch/?id=4789568n