Rio's Texas Medical Fund

Rio is 5 years old and has a rare form of cancer called Langerhan Cell Histiocytosis.  He was first diagnosed at only 5 months old.  We were lucky that at the time he only had skin involvement which was extremely mild and didn't require much treatment or any problems for him other than severe diaper rash and cradle cap.  I don't know he felt or the pain he felt because he was a baby but he was a strong little boy even then!

(Rio and his sister Christmas 2016)

(Rio right after his diagnosis (6 months)
(Rio's first hospitilization.. poor baby was so sick and couldn't breathe but he is ALWAYS smiling!!)
(Still smiling)

Fast forward to February 2014!  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 specialist Dr. Kenneth McClain who then informed us that what Rio was experiencing was a relapse with GI involvement.  Dr. McClain suggested we head back to Birmingham and start treatment immediately.

(Our first visit to Texas!  Rio and Dr. McClain)

We spent months in Birmingham 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.  After about 6 months of trying to convince them to just follow Dr. McClain's recommendations and them refusing I almost gave up!  The doctors kept telling me I would "know" if something was wrong.  Problem was 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 constantly telling me "They did not believe it was the LCH."

(Rio with Hand in Paw pup at the clinic while getting tests)
(Another test!  He had his sister with him to help!)
(More testing!)
(Rio the super guy!  Inpatient and more testing)
(Testing)
(More testing)

Rio's symptoms seemed to disappear for a bit so I assumed he was just getting better. I dropped it and we just went on with life.  After about 4 months of no symptoms they came back and boy did they come BACK!!  They were so much worse!  I got on the phone with Dr. McClain and we figured out a way to get Rio to Houston again!  When we got here Rio started chemo within about two weeks!  His little insides were a mess. 
 
(Rio on his 5th birthday right before his symptoms came back with a vengence)

He has now been diagnosed with multisystem LCH (skin, mouth, GI and pituitary.)  Rio also has something called Diabetes Insipidus and this is 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 most likely from the DI diagnosis.   This is life threatening if not maintained and treated properly.  Rio has a mild case right now but this too could progress as he gets older. 
 (Back in Texas with Dr. McClain)

Rio is on a chemotherapy called Cyterabine or ARA-C.  He gets weekly infusions that are typically 4 or 5 days of chemo every two weeks.  Along with his other medications we have started seeing significant improvement in his overall health.  We are blessed we were able to get to Texas for his treatment.

(Right after Port surgery)
(Chemo)

Once again we are asking for your help and support! What we imagined would be a 3 month stay in Houston has now turned in to what at least another six to twelve months!  We must stay here because the doctors in Birmingham still refuse to work with Dr. McClain even though we have seen much improvement for Rio since we have found the right chemo protocol!

Fortunately, up to now we have had affordable temporary accommodation but now the search commences, yet again, to find alternative and affordable accommodation which is very difficult in Houston. We need to stay close to the hospital so if Rio needs to get to the hospital we can get there quickly. Rents in Houston are high and we hope to find suitable accommodation at a somewhat reasonable cost.

(Getting his port accessed)
(More smiles while inpatient in Texas)

Without your help we can't possibly do this alone! Accommodation is our main concern but we also need help with day to day living expenses tied with having a sick child this includes parking which can cost up to $72 dollars in any one week... toiletries and food at the hospital. We would really appreciate your help and if you could share Rio's page we would be so very grateful! All donations count be it $5 or $1000.

(Mom take a picture of me and my port)

Without your help we will be unable to continue to stay in Houston which is the only way Rio will get the treatment he so desperately needs if you can host an event or support Rio in any way please do!  We would be eternally grateful!  If you can't donate or sponsor a fundraising event could you please just share his story?  Thanks so much!!!

(Running fever and at the ER)
(Got my big sister with me)
(Inpatient getting DI diagnosis)
(Always smiling! No matter how yucky he feels)