Day 1 Miles 103.5: Dedicated to Claire Biangardi, HLH Warrior

Every day of our ride is dedicated to an HLH warrior, today we dedicate our 103.5 mile ride to CLaire Biangardi.  She is 3 years old and was diagnosed with HLH in July 2013, she is lined up to receive a Bone Marrow Transplant in the months to come.  We wish her lots of strength n her fight for the life she deserves.  We hope that our day may be an inspiration to her to keep fighting.
To a special girl:

Courtesy of the Akin Foundation.

A few years back when Miabelle was going through her BMT, Justin Akin dedicated his first cycling day to Miabelle.  Still today it touches us that he dedicated a day to her.  Thank you Justin!

A quick word on Miabelle before I go nuts about this cycling trip, Mama said that Miabelle was doing much better but that she was misbehaving all day.  Good news is that she is better, bad news is that we have no idea where the fevers came from.  Well, time will tell.

As to the ride, it was not easy to say the least.  Not because of the muscles cramping up (that started happening in the last 10 miles) but who ever invented the road bike saddle did not really care about comfort... let me tell you our hineys are suffering BIG TIME!   I can barely sit on a chair to write this blog.

The day went something like this:
-Depart Jackson MS at 6am by car to Natchez Mississipi, the start (100 miles away).  Once we arrived the amazing thing was that a former nurse of Cincinnati Childrens (I think) had gathered an entire community to welcome us and cycle the first few miles with us.  There are some very nice people in Mississippi.  Thank you!!!!!

 Loading up on carbs!

Men in tights...Ladies Oh behave!

Ready Freddy....not really!

-At Mile 45 we had a lunch break.  Our supporting team had prepared a delicious sandwich buffet.  I think Gordon Ramsey would not even been able to top it.  Fatigue did start to set in at the last 5 miles of the first 45, but after a break we moved on.

 Finally a break.

 Support team - Thanks for your care.

 Dennis the Menace - still smiling.

Patrick Peloton leader - still smiling.

-At Mile 72, the support team again setup tent to welcome us for some snacks.  Well, just before getting there I will confess Dennis and I truly and definitely started to feel the hiney-does-not-like-the-saddle-no-more.  My goodness during them last two miles I started to wonder what the hell I was doing on the bike ride, but have no fear I am not a quitter.  These kids can fight HLH and survive a bone marrow transplant than I can get my hiney on a bike and put the metal to the peddle.  Once we were recharged we started our final 31 miles.

-Mama Mia!!!  After cycling 103.5 miles, it hurt so bad that I was cycling standing up.  We arrived, got changed and awaiting to go for dinner we looked like this:

Both of them actually fell asleep awaiting to go to dinner.

 Team Cycling for an HLH Cure

 Canada is present.

I would like to finish by saying that Sean, a young gentleman from Canada who had HLH in 2008 and received a transplant the same year, is a true inspiration and we are so blessed to have him on our cycling team.  Not only did he fight HLH and have a bone marrow transplant but he had a hip replacement as the result of the steroids he received to control the HLH.  Still today he has major muscle pains from all the steroids.  Well believe it or not but he cycled with us today and will cycle the remaining 600 miles.  He is an inspiration because he is a fighter but more importantly his attitude on life and the challenges in life is so amazing.  His drive and perseverence is impressive to say the least.   Despite the steroids, HLH and BMT he shows us all that you can do anything you put your mind to regardless of what destiny serves you.  An amazing young man.  We are so blessed to have you on the team and keep inspiring all these kids because you are the hope they need and deserve!

Personally I hope that Miabelle grows up to be the optimist that Sean is!

These are the stats:
103.5 Miles (166.56 km)
6280 Calories
6 h 28 M on the bike
2755 vertical feet (800 meters) of hills

Ok, got to go.  My hiney is killing me and I am REALLY REALLY REALLY tired!!!!

Sleepy sleep,

Papa

Day -1 Mile 0: Here we are in Mississippi

First the important news.  Miabelle woke up full energy and thus went back to school but by the afternoon things changed and fevers were back at 101.  Although she was energetic, fevers are just not a good thing.  The urine sample results were in and regretfully there is no sign of a viral infection which is what the pediatrician expected.  So we are in day 2 of fevers with no indication of what it may be.  Annoying and concerning us.  We will see in the coming days.  She is a strong cookie.

As to my crazy decision to cycle 700 miles with a team of as crazy peeps as me, left NY this morning at 6.30 am, connected through Charlotte and landed in Jackson MS at 11am.  Easy and comfortable flight.
Once arrived Dennis (HLH papa and fellow crazy cyclist) and I went to pick up my bike at the bike store and we went to get some provisions for the ride.  Then we were rather bored and made the not so intelligent decision to have lunch and a few drinks...yes we are true athletes loading up on carbs for the next day...then again I think a steak at Ruth Chris may have been too many carbs.  We just needed to get our nerves under control and what better than some unhealthy food.

In the early evening the rest of the crew arrived and we had a little motivational meeting and gave us our shirts.

There is nothing better than cycling for a cause, but I am not certain I lost enough weight to fit in these tight shirts and pants.  If I had known that I was going to be a man in tights, shave my legs (not going to happen) and put on the Chamois Butter (gross; look it up but gross), I might have reconsidered this crazy decision to cycle for HLH Awareness.

In addition, although leader Justin gave us maps to follow, I can predict that CNN will announce soon that a Belgian cyclist got lost in the jungles of Mississippi and this time I thing that I will not be the only one cause half of us bought GPS systems but have no clew how to use it.  I never said we were geniuses, I only said we were wannabee athletes.

Tomorrow we wake up at 5 and depart at 5.30am, and here I thought I was getting a week off.

Sleepy sleep,
papa

Day -2 Mile 0 + Miabelle spiked a fever

Miabelle is not feeling well.  Fever spiked at 102F, she is very tired and there is no indication what it is at this time.  Mama took her to the doctor and it seems she might have caught a virus.  They took again some urine and blood samples and we should have some results tomorrow.  Both mama and papa are nervous, it truly will never go away this over-concerned feeling that something little could be something big.  We will know more tomorrow.

In the meanwhile papa packed and is ready to go.  We are day -2 at mile 0 of the HLH ride for a cure organized by the Matthew and Andrew Akin Foundation (www.matthewandandrew.org) of which all benefits go to the HLH Center of Excellence of the Cincinnati Childrens Hospital for research and family support.  If you care to sponsor go to the Akin page, select Bike Ride and then Donate to a Rider (select Gillier or any other rider)

Am I ready certainly not but I will rank this ride among one of my craziest decisions.  Cycling 700 miles in 7 days will be a challenge but next to what these HLH warriors under go it is a little effort to create a lot of awareness.

On a positive note, I lost 30 pounds since our lock down days in Cincy.  That is 30 pounds less I can to drag 700 miles.  Thank smurfness!

On the Akin foundation page you can sign up to receive daily updates of our tour.  Hope you will stay tuned.

Agenda for the coming 10 days:
Friday: Wake up 4am for 6.30 am flight from NY to Mississipi: my first time in this state, I cannot wait!
Saturday: Bike ride starts: flat - I expect 7 hours on the saddle.
Sunday: more biking: flat - I expect 8 hours on the saddle.
Monday: more more more: flat - I expect 9 hours on the saddle.
Tuesday: Hills - I expect 2 hours in an ambulance and 5 hours in the hospital.
Wednesday: turns, cycle for a good 7 hours and then fly with my fellow cyclists back and forth to NY to attend the Icla Da Silva Foundation Hope Gala for bone marrow.
Thursday: more cycling
Friday: Arrive, hopefully alive, at Cincinnati Childrens Hospital in Cincinnati Ohio for the start of the HLH Global Conference.  Followed by a nice dinner in the Cincy Zoo.
Saturday: HLH Conference followed by the Red Tie Gala of the Ronald McDonald House in Cincinnati in benefit of housing for families of patients.
Sunday: Fly back to NY, and SLEEP for eternity and beyond.

Them papas on a mission are CRAZY!!!!!!!!!  But in this world some insanity keeps us sane.

HLH AWARENESS.  Spread the word, tell friends of our HLH ride for a cure.  Tell them to go to the Akin Foundation page to follow our journey.

Thank you and stay tuned!
Papa