Duvel BMT Support & Expenses, Rnd 1

Hello - I'm Jason!  I'm 41 years old, single father of two awesome, busy teenagers - Talia and Logan, turning 18 and 15 in August, who live primarily with me. We've lived in the KC area since September of 2004, and in Lee's Summit since the Spring of 2009.  We absolutely love the KC area and Lee's Summit!  Talia will be graduating from Lee's Summit North HS in 2016, and Logan is an entering freshman this Fall (two highschoolers?!) and they are both very active in a variety of activities.  I am a former software engineer and test analyst with 10 years at Cerner, but unfortunately in the Fall of 2014 we had to part ways and I'm now on disability.  As you can imagine, that does not help make ends meet.

In the Spring of 2012 I was diagnosed with Myelodysplastic Syndrome - MDS a hematological condition where my bone marrow isn't producing good blood cells.  I've been neutropenic the entire time, meaning I have low white cell counts constantly and am always at risk of infections.  I had 19 rounds of near monthly chemo from Dec 2012-Nov 2014 to slow the MDS down, but my body can't take any more.  Since early 2015 I've also been very anemic - extremely fatigued, weak, simply taking a shower or walking upstairs in my house leaves me short of breath and sitting down.  Unfortunately, the last year or so I've been unable to do much at all with my kids, and even going to the store has become extremely challenging - my daughter has had to shoulder a lot of that responsibility for us unfortunately.  

The only cure for MDS is a bone marrow transplant.  The only outcome for MDS is a form of leukemia but there is no telling when it will onset, and curing leukemia is much harder.  Unfortunately, my latest bone marrow biopsies show that leukemia is becoming a more likely outcome.  So we're moving ahead with the bone marrow transplant and as if that was not challenging enough, my daugther is going to be my amazing donor.  She's scared, I'm scared, we're all a bit overwhelmed in every way but these two are the light of my life and an absolute joy to know.  These are two of the most awesome individuals a person could know and so very talented.  I am blessed to have them in my life.
(first day of school, 2014)
(kids solo trip to St Louis for Talia to attend a college briefing from NYU and both of them to have a little time with their mom at the zoo, Spring 2015)

Seriously...those are two awesome kids right there.  :-) 

So... not only do I have a crazy transplant to survive but also extremely strict house rules for my 100+ days of recovery (and those are just the guest and visitor rules). This has a ton of challenges like needing someone to use a bleach wipe on every bottle of water or soda or anything that is handed to me, very VERY strict meal procedures, and needing my house to be thoroughly deep cleaned while I'm in the hospital and needing a caregiver in the house with me 24/7 for 100 days.  The rules for my recovery are intense and challenging by themselves and have a whole list of things for every member of our household to follow every day.  Including things like near daily visits back to the BMT clinic - that is a 30 minute drive alone, and my caregiver has to do that drive for me every time and has to do things to ensure the car is clean before I even set foot in it.  I will have to get my baby shots again later on! 

I'm fortunate and blessed that my mother is a retired wound care and infection control nurse and is able to take on my primary caregiving role, and that there are other family and friends willing to step in for my mom to have a few days off during that 100 days.  My dad is also traveling from South Carolina to help!  (me, my dad, my younger brother (yes, I'm short :p), 2013)

One area we are not quite so blessed is in the bank.  We're going to need help to get through this.  There are a lot of bills to take care of living here, driving to the BMT clinic and hospitals regularly, insurance deductibles, and the like, all while living on SS disability.  If I'm extremely lucky, in a years time, maybe a little more or less, I could be hunting for a new job.  Hopefully I will be able to do that without mountains of debt looming over us as I watch Talia head off to college.  

My family and I are asking for your help.  Our last vacation was the summer of 2012 to San Diego Comic Con and while we were hoping to go to Colorado and Utah this summer, that is not happening.  Right now, I am planning on a victorious transplant and full recovery thanks to that beautiful young lady you see in a few pictures above, and with a lot of help from family and friends, and a lot of prayer.  Hopefully in a year we can take that vacation.  Hopefully in the meantime we are able to make ends meet and pay off hospital bills and the like.  Just in getting my house ready for my recovery we are spending a lot of money to safeguard my health - I am having a mini-kitchen (sans sink) put in right next to my bedroom  so that the majority of my food prep can be 100% isolated from the kids and the cat.  We are constructing a makeshift temporary wall across the living room so my kids can do their own laundry still and not need to shower every time they walk in the front door from anywhere.  Tons and tons and tons of bleach wipes for every surface, every day as often as possible.  

I am from Rolla, MO, graduated from RHS  class of 92 (go Bulldogs!), and graduated from UMR in 2003 (just before it became MS&T - go Miners!).  My kids are Talia and Logan Duvel , born in Rolla in 1997 and 2000, and are outstanding kids and excellent students in the Lee's Summit R7 school district, both attending LSN HS this Fall (Go Broncos!!) .  My parents are Joyce & Butch Leuthart of Rolla, MO, and Ron & Melva Duvel of Lancaster, SC.  My brother and his wife are Jeff & Heather Duvel of Flat, MO.  I am a member of Soka Gakkai International  (SGI) a lay Buddhist organization with millions of members in 193 countries.  

My goals: 
* Victorious transplant and full recovery!!  Hopefully with minimal debt...
* See both of my kids graduate HS, college, and beyond!
* Camping and siteseeing vacation with my kids summer of 2016.  I have to be cleared for travel before then and make a good recovery, and hopefully, have a little money in the bank.
* Returning to work in some fashion...maybe following my dreams.
* Travel, particularly to London and Oregon!
* Returning to woodworking and chocolate making.  
* Buy a laser engraver - this actually goes hand-in-hand with the above hobbies.
* Learn to kayak.  I've wanted to do this for years.

Thank you for reading and for any support!