Update: Monday, 25 February 2013

This post is a hard one for a couple reasons. First and foremost, Mark goes into the hospital on 2/27. That’s this Wednesday. The second, and no less important, is that we are launching a Donations page this week.

http://www.giveforward.com/supportingthegagnons

Why do Mark and Terri need your help?

When Mark was first diagnosed seven years ago, he was healthy. But last November, Mark got severely ill and was hospitalized four times from November to January. During this time Mark used all of his saved up sick and vacation time. So as he goes onto short-term disability, Mark is no longer receiving a paycheck. Which has had a long-term impact on their financial plans.

Mark and Terri planned and saved up enough money to cover normal cost-of-living expenses (like food and utilities) for the family for a few months. They did their best to anticipate their needs, but something that was unforeseen at that time was covering their insurance premiums. When they were both teachers in California, those expenses were covered, but their current insurance plan doesn’t cover these significant expenses.

The insurance premiums and cost of medications Mark has to take to stay alive are very expensive. One positive is the insurance’s maximum cap for medications is about $2,500. Still, the insurance premiums are over $500 a month until Family Medical Leave Act (FMLA) is over, and then the premiums shoot up to $1500 a month for the family under COBRA.

Unfortunately, the health insurance will not cover the travel and housing of their clients (people like Mark and Terri). Most insurance companies do, but Coventry, the insurance plan for the University where Mark works, does not. So they now have to cope with the costs of renting a place for Terri in St Louis while Mark is in the hospital and as Mark begins his recovery.

They have found a great place to stay, called “Almost Home”, dedicated to transplant patients and their families. Terri will be staying there as she helps Mark during the first 30 days of his isolation in the hospital. After that though, Mark needs to stay within 20 minutes of the hospital for next 30 or more days after Mark leaves. So they cannot return to Columbia, a two-hour drive, and must remain in or around St Louis. This again, is an unforeseen expense.

What can we as Mark and Terri’s friends and family do to help them?

First of all, is it appropriate for Mark and Terri to ask for help? Asking for money is perhaps the hardest thing for them in all of this. So they researched how other families have handled this. They found that it is advised by the National Foundation for Transplants (NFT) and the National Transplant Assistance Fund (NTAF) for people who face a major life threatening illness, like a bone marrow transplant, to have friends and family raise money through fundraisers to help offset the unusual costs of their medical treatment and expenses.

Many people have fundraisers through their church groups or associations. Mark and Terri never found a church they were comfortable with in Missouri. But they do have many wonderful friends and family! Many live in California, some live in Missouri, and some live all over the country!

Fundraisers can be simple. Place a donation cup with Mark’s story and a picture of the family at your workplace. Have a raffle. Throw party and invite all of Mark and Terri’s friends to donate a small amount to their cause. Utilize your strengths; maybe it can be a small music festival or a silent auction for local artists. It is impossible for me to coordinate fundraisers from afar. So I’m hoping someone locally can step up and organize one at your area.

Mark and Terri, the two of them need our help. It’s not easy as they go into this to ask for money, but they know how fast the medical bills will add up and so they’re putting their pride aside in honor of their friendships. Once you have finished the fundraiser, please use the Give Forward website: http://www.giveforward.com/supportingthegagnons  to place the fundraising money. It will make a big difference in their lives!

– Jeff

 

 

Update: 07 February 2013

As Mark and the family gear up for the 27 Feb procedure, we’re setting up a calendar where you can volunteer to help with various activities: from giving Terri or my parents a break to playing laser tag with Mark. Okay, maybe not so much the latter. But you get the idea.

The page will we be going live in a week or so through CaringBridge.com where we’ll outline all the things you can help out with.

To prep for this, we’re asking anyone and everyone to please sign-up today at:

http://supportplanner.caringbridge.org/planners/helpingmark

Once you do, you’ll be able to volunteer for the activities once we create the calendar. But if you can do it now, it’ll save you a lot of time in the near future.

As always, the entire family thanks you in advance!

-Jeff

**************************************************************************************

Hi, I’m Jeff.

For those that don’t know me, I’m the brother-in-law and brother of Mark and Terri respectively. And they’ve asked me to help out in a couple of different ways as Mark goes through his stem cell transplant. Primarily, they’re asking me to coordinate the assistance — the help — they’ll need during the next year or two. Year or two, you ask? Well before you let that boggle your mind, take a breath and let’s understand a few basics first.

The stem cell transplant is an intensive and long process, but Mark’s not the only one who’s going to be affected by the transplant. My sister, Terri, is going to be the “primary caregiver” while Mark is in the hospital and afterward. My parents, Bob and Loretta, are total team players and are stepping up to help their kids, Caitie and Kai, for the two or more months that Mark and Terri have to be in St. Louis for the procedure.

So Ask Jeff (that’s me!) is a page where you can find out what the family needs in the way of assistance. I’m sure you understand that this is not going to be an easy time and that our family can’t do this alone. The immediate family is gonna need all of our help. And a lot of us are going to feel helpless and impotent, but there are many ways we can make a difference:

  • perhaps you can volunteer your time.
  • perhaps you can donate some money.

The fact is: Mark will need a 24/7 caregiver for the first 100 days and Terri is that caregiver. But she’s also a mom with two smart rambunctious kids.

  • She going to need breaks from her role as caregiver, so she can care for the kids, run errands…and just have some quiet alone time to regain her sanity.

Bob and Loretta, those ever-loving grandparents, are moving to Columbia to care for Caitie and Kai for two or more months.

  • They’re going to need breaks so they can return to their own home and take care of their own personal needs.

Basically, it’s gonna be hard on the family but we’re all committed to making it work. That’s what family does. But we know they, and we, aren’t alone in this. Because there are a whole lot of people who love Mark, Terri, their kids and my folks, and who want to help. For example, Mike (a friend of Mark’s) has volunteered to take the kids for a weekend or two to allow my Mom and Dad to go back to their home.

How can you help? Well aside from giving Terri and my parents some well-needed breaks, you should know that Mark will also be unable to work for several months (perhaps longer) and Terri will only be able to work part-time as she cares for him. They have been saving for several years, but that money will be used up.

So if you aren’t close enough to take Terri for a coffee, sit with Mark for an hour or maybe take the kids to the park, there are other ways you can help out. After all, when many people chip in to help a friend in need, small amounts add up. And that need is paid for. Some examples include:

  • Insurance premiums NEED to be paid and cannot lapse
  • Medications needed, until the deductible limit is capped
  • Rent on the place Terri, and eventually Mark, will be living at since they can’t be more than 20 minutes away once he leaves isolation

Here are couple areas where we’re starting out and beginning our search for the right way to donate. There are several options to consider, if you have experience or knowledge about these options, please post in the comments or contact me.

National Foundation for Transplants (NFT)
Contact: (800) 489-3863
Population served: Patients who need a stem cell transplant or who have had a transplant in the United States
NFT provides financial support services and patient advocacy for transplant candidates, recipients and their families.

  • Trains volunteers to set up a fundraising campaign in the patient’s community
  • Provides limited emergency assistance in some cases
  • Provides an incentive grant for new patient campaigns
  • Provides grants for bone marrow donor searches when insurance does not cover them

National Transplant Assistance Fund (NTAF)
Contact: (800) 642-8399
Population served: Solid organ, bone marrow or stem cell transplant patients in the United States
NTAF helps patients and their families organize, launch and sustain grassroots fundraising campaigns and providing fiscal accountability for the funds.

  • Helps mobilize communities to raise funds for medical needs and expenses not covered by insurance, such as lodging and transportation
  • Helps patients organize, launch and sustain successful fundraising campaigns based on the kind of support network and special events available in their home communities
  • NTAF serves as a trustee for the funds raised and redistributes to patient as reimbursements or directly to vendor

Other Options:

Some other fee-services and  private companies that provide these services are:

 

The point of all this is that, you’re not helpless to help them. Use this blog to discuss the best way to move forward, ask questions, get involved. It may not seem like an easy thing to get started, but it’s a lot easier on us that it will be on them.

Thanks for your time!

Love, Jeff

 

 

 

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