…71 Days Until Race Day
How’s your day going?
Well, this is Rio and today is his 6th birthday.
I’m just going to turn this over to his mom, LeighAnn.
“Look at that face!! That is the face of a sweet, brave 6-year-old boy! He is simply amazing! I don’t know where he gets his strength!
Rio has a rare form of cancer called Langerhan Cell Histiocytosis (LCH).
He was first diagnosed at only 5-months-old.
Three years ago, Rio started having bowel problems. He would have severe stomach aches and also blood in his stool each time he went to the bathroom.
We did extensive testing and finally Sept. 8, 2014 we were able to see the world’s foremost specialist, Dr. Kenneth McClain at Texas Children’s Cancer Center, who then informed us that Rio was experiencing a relapse with GI involvement.
Dr. McClain suggested we head back to Birmingham and start treatment immediately.
We spent months trying to work with the oncology team there to get Rio’s treatment started, but we were unsuccessful.
The doctor’s at home were adamant that Dr. McClain was wrong and there must be another explanation. They kept telling me I would ‘know’ if something was wrong.
I DID know!
They were the ones telling me it was all in my head but wouldn’t give me an explanation of what was wrong with my little buddy except, ‘They did not believe it was LCH.’
He has now been diagnosed with multisystem LCH (skin, mouth, GI and pituitary.) Rio also has Diabetes Insipidus as a result of the LCH in his pituitary. This is a life-long condition that he will be on medication for.
He also has an adrenal insufficiency. This is life-threatening if not maintained and treated properly.
Every two weeks, for 4 days in a row, he has poison put in his little body! It hurts my heart!!
Today I am struggling to find comfort. I am struggling to figure out how we are supposed to do this over the next year!
What we imagined would be a 3-month stay in Houston has now turned into at least another six to twelve months!
We must stay here because the doctors at home in Alabama, still refuse to work with Dr. McClain at Texas Children’s Cancer Center even though we have seen much improvement for Rio since we have found the right chemo protocol!
I want to go home to my job, where I don’t have to figure out where we will get the money for our next meal or to buy toilet paper or soap.
I am tired of begging people for money to help us live daily!
I feel like since we aren’t really around people from home, we are just forgotten. It is impossible to keep a job right now.
To KEEP MY SON ALIVE, I had to move 700 miles from home. If we don’t get more financial help the harsh reality is we may have to go back home so I can work and then pray the doctors in Alabama will work with Dr. McClain and Rio will get the treatment he needs.
I look around and I don’t understand what I have done wrong. I mean punish me, that’s fine, but my kids? They haven’t done anything!
I am so weak and so vulnerable right now! I am lost and hurt and angry! I am tired and I want to go home but we can’t. Not yet!
This little boy has to get well!
We have so much to worry about already it would be so incredibly wonderful not to have to worry about all the bills that are piling up while we are working to save my child’s life from cancer!
And so far, we are saving his life.
Along with his other medications we have started seeing significant improvement in his overall health.
Rio, this might be too much information, but I HAVE to share it so that you KNOW that today was YOUR day.
I ran 4.25 miles then had my own bowel problems.
I couldn’t stop though. You’ve had bowel problems and you haven’t stopped!
Plus, you aren’t 4.25 years old today. You are 6-YEARS-OLD.
So, I took some medicine, got back out there and ran YOUR AGE today, buddy.
Thank you for inspiring me, pal.
If you can help Rio and his family, they have a gofundme page. Here is the link: https://www.gofundme.com/riomahaffey
Off day tomorrow and I will post a photo that I think is hilarious.