Lap of America

Quote from Pascal

I will take a black unit when you get one ready!!! I can PayPal the 40 bucks or meet you and buy you lunch too.

I shall put you down on the list
Shoot me a note and tell me which options you want for stitching(red or black).
If your close enough I will put it your happy hands or install it when we meet

Quote from Pascal

I will take a black unit when you get one ready!!! I can PayPal the 40 bucks or meet you and buy you lunch too.

give me a shout Pascal. I think I can take care of you before I go back in for treatment next week

I have been kicking around this post for a few days now, in between tinkering on the Slingshot and making E-brakes for some of you.

You see I had a conversation with my oncologist and Rad Onc and have been told that my special powers have gone into remission after 200hrs of Chemo
No word on if I have to finish all 6 rounds or not but given the good news my doc is going to talk with my transplant team and conclude as to whether I should go straight to transplant after 4 rounds given my response to therapy and love of hospital food
Its just been a weird experience and something I never get to escape now. Sorta like a push forward and always looking back to make sure your 6 is clear only its just now starting to sink in, how its now just part of who I am and not who I was from now on.
Like all of these children you have all stepped up to help, none of us get to stop looking back over our shoulders but the view ahead is soooo much brighter than I remember it being before all of this began

So in a manner or ways I am getting ahead of myself and may still be required to finish it all rounds as per the original plan. Even so I will be half way there and in remission when I finish the next round starting on Monday
I will also still be sharing my experience of this therapy merry go round until it sinks in,... I pass,.. or feel I have tried my best to turn on that human light we all share for one another
So there ya have it folk.
Any day above ground is a good one, so share with your favorite group the price of a starbucks coffee once and awhile and make someone's day a bit brighter than it was the day before

Well 3rd round behind me for a bit more than a week now. That was a tough one for sure.
But I thought that I could express why I ask so many of you to share with St. Jude in terms more familiar. Financial!!!!!
I share my experience first hand with you so you can understand the physical and health portion but just how expensive is it for these children? Well here you go for those who are blessed with Insurance!!
Co pays of about $200 a week, every week for CBC labs, oncology visits.
Over $10,000 for a medical port implantation which is used to administer the Chemotherapy.
A few thousand dollars for the Methotrexate shot administered every month into the spinal column.
Over $10,000 for each 5 day stay at the hospital(100hrs of chemotherapy), Many of these children will be in patient for multiple stays for treatment. I have 6 of them.
An average of $375,000 @ bone marrow transplant(autologous).
$6,000 to $9,000 for lodging as near or on site(within 60minutes) for the Chemotherapy conditioning and transplant with engraftment period 60 -90 days from transplant.
So you might just understand the tough decisions these families have to make and the limitations of even the best of insurance.

This is why I ask you all on a regular basis to donate a five spot to St.Jude. I was not always a patient, in fact I started this before I knew my life was about to change but there is nothing to stop me from finishing what I have started.
Think about that the next time you grab a bagel or a coffee,...Who could use that small change even if its only once in your busy life.

Best regards to you all
Mark

Okay young Jedi.

I keep seeing donations pop up on my e-mail time to time and I figure I owe you all a deep and sincere thank you for sharing.
None of you had to give but you did so anyhow. Even when an e-brake was involved you gave more than I asked and as a result we are well over $5000 raised for the children at St. Jude.

Thank you all very much
Mark

Well round 4 is done as of last Friday and I feel human once again
Now the thanks to you gals and guys for all the good cheer and support for my efforts here and on a personal level
Will have several weeks before the BMT in October so I have begun work on a few interesting projects for myself but will be assembling some additional E-brake kits as well as a Carbon Fiber fresh air system(3"). The same process for the air kit will be employed as the E-brakes and will be for cost plus a donation.
As before this will be a not for profit deal and when I hit the road upon completion of the engraftment process this will come to an end.
Since I now have shirts the donation system will scale on how much for additional swag.
So you will get some arm bands as well as the shirt and bag depending on the donation level. Nothing crazy but there will still be $20 for the E-brake but the Carbon fresh air will be adjusted to $40 minimum donation. For extra swag I am thinking anything over $50 to St.Jude will get the bag and shirts on top of the arm bands that glow in the dark.
The goal is to provide you with a very cool and functional plug and play system for under $200 plus your donation of choice.
I will post some photos as soon as I have mine installed and I am satisfied with its finish and have tinkered on it. Each system will be mounted, adjusted on mine before its shipped.
Now there will be a period of time from October 8th until I can come home later in November and continue the recovery that I will just not be able to build anything so keep that in mind when asking me your questions. I should have enough time however to make several of each so stay tuned
Thanks again for all the help with this fund raiser and we shall see you all on the roads very soon

Mark

Well its been an interesting journey and here is the update thus far. Im here at Moffitt Cancer center and have already had the Bone Marrow transplant. From arrival to departure should be around 5 weeks or so but im not counting
I hope the tid bits of humor helped to fill in those grey areas about whats going on in this world and how it affects the kids we have all been helping.
Every one of those charities matter my friends and when in dought contact your local hospital and see if they have a Angel program to assist families in your own areas.
We even recruited some of the local staff here to help pass out some shirts and arm bands for the cause.
So with a little luck my following posts will pick back up on the air box and E-brake kits until I head out onto the road. In the meantime thank you all for your efforts to help all those families, especially your warm thoughts for our own family.

Mark

Hello gang. Well we have all been through a very interesting year to say the very least.
My funny little adventure seems to have come to an end at last. A few minor details and what could be considered monitoring(like house arrest) and thats about it and none too soon.
This little adventure was supposed to take place last August. Now unless the stars align to derail it once again I am going to try and put this dog to rest early May and see just how reliable the old girl is again on the back water roads of America.

You may have noticed that I stopped building E-brakes? Just had to start hoarding my fuel expenses and thats all. But I do have one last thing I am offering up here and around the globe. The gift bags @ shirt,bands and nick knacks that some of your E-brake owners got in your boxes. I am going over to the post today to check out the flat rate options available and then post up the results. Bags will be a $20 donation to St. Jude Childrens Research Hospital and I will see what sizes are available. I know my wife ordered womens cuts as well but how many of what are left I have to see.
A few pics of the basic and perhaps one of your e-brake owners can share on what else you might have gotten in your boxes.