Riley Connolly's Website >
What does Riley have?
Where can you find more information about this disease?
How can you help Riley or other children with LCH?
Riley has Langerhans Cell Histiocytosis or LCH. LCH is a rare blood disease that is caused by an excess
of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung,
liver, spleen, gums, ears, eyes and/or the central nervous system. The disease can range from limited
involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and
debilitating. In some cases, the disease can be life-threatening.
of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung,
liver, spleen, gums, ears, eyes and/or the central nervous system. The disease can range from limited
involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and
debilitating. In some cases, the disease can be life-threatening.
This disease afflicts only 1 in 200,000 people each year and the good news is there is an 85% survival rate.
But because the disease is so rare, the Histiocytosis Association has to rely on private funding for research.
You can make a donation at the histio.org website. To help Riley, an account has been set up to help with
medical bills that may not be covered by insurance and other treatments that Riley will have to keep him
healthy. You can send your contributions to: Bank of Arizona, 5050 N. 44th Street, Phoenix, AZ 85018.
Please make checks payable to The Riley Connolly Contribution Fund. The account number is 8091021119.
But because the disease is so rare, the Histiocytosis Association has to rely on private funding for research.
You can make a donation at the histio.org website. To help Riley, an account has been set up to help with
medical bills that may not be covered by insurance and other treatments that Riley will have to keep him
healthy. You can send your contributions to: Bank of Arizona, 5050 N. 44th Street, Phoenix, AZ 85018.
Please make checks payable to The Riley Connolly Contribution Fund. The account number is 8091021119.
Riley Connolly's fight
to beat LCH
to beat LCH
The best place to go to find out more about LCH is www.histio.org, then look at LCH in children. Riley has
single system LCH that has effected his lymphnodes.
single system LCH that has effected his lymphnodes.
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July 3, 2008.
Well, I have really slacked this time. We got home from Riley's Make-A-Wish Hawaii Trip on May 29 and I still
haven't added pictures to the website. We had an awesome time. We stayed in the 5 star Hyatt on
Ka'anapalli beach in Maui, which was beautiful all by itself. We took a helicopter ride over the volcano (which
is now just a crater), but it was still absolutely beautiful. And we were also taken over the waterfalls of the
rain forest in Hana. We also went snorkeling, took a ride in a submarine, chartered a deep sea fishing boat
for the day - (didn't catch a thing), went parasailing and did a lot of playing in the beach and pool. Mom and
Dad also took a break from our normal workout regime and managed to put away an awful lot of Mai Tai's
and Margarita's!!! The boys drank a lot of virgin Pina Coladas, that's all Finton wants now. Riley had a really
awesome trip and didn't want to come home. I don't know how we managed to raise these beach boys in
AZ, but they absolutely love the ocean. Someday we will have to move near an Ocean for them.
After Hawaii, I started a kids triathlon clinic for kids ages 5-12. I now have 11 kids, with my new addition this
week and it has been so much fun. I do it for free at my house and in my neighborhood. The kids have been
so amazing and are really into it. We swim laps, ride our bikes around the block and run around my park in
front of the house. These kids are going to be ready come July!! Our triathlon, Chances for Children, is on
July 27 and I plan to take lots of pictures.
I also started a home business selling the most amazing Vitamin/mineral supplement on the market today.
I started using this supplement first and within 2 weeks my elbow pain subsided and within 6 weeks, the
pain in my neck and shoulder from breaking my arm 4 years ago, was gone. Not to mention how great I feel
everyday of my life. The website is www.myvemma.com.connolly
If you are interested in trying Vemma, please make sure to sign up on my website as a member to get a
discount and rebates. Or feel free to contact me for more info or free samples. If you like energy drinks, you
have to switch to Verve!. It's the only healthy energy drink out there. It has the Vemma nutrition in it to make it
healthy for you.
So - here are some pictures - you can click on them to make them larger.
Well, I have really slacked this time. We got home from Riley's Make-A-Wish Hawaii Trip on May 29 and I still
haven't added pictures to the website. We had an awesome time. We stayed in the 5 star Hyatt on
Ka'anapalli beach in Maui, which was beautiful all by itself. We took a helicopter ride over the volcano (which
is now just a crater), but it was still absolutely beautiful. And we were also taken over the waterfalls of the
rain forest in Hana. We also went snorkeling, took a ride in a submarine, chartered a deep sea fishing boat
for the day - (didn't catch a thing), went parasailing and did a lot of playing in the beach and pool. Mom and
Dad also took a break from our normal workout regime and managed to put away an awful lot of Mai Tai's
and Margarita's!!! The boys drank a lot of virgin Pina Coladas, that's all Finton wants now. Riley had a really
awesome trip and didn't want to come home. I don't know how we managed to raise these beach boys in
AZ, but they absolutely love the ocean. Someday we will have to move near an Ocean for them.
After Hawaii, I started a kids triathlon clinic for kids ages 5-12. I now have 11 kids, with my new addition this
week and it has been so much fun. I do it for free at my house and in my neighborhood. The kids have been
so amazing and are really into it. We swim laps, ride our bikes around the block and run around my park in
front of the house. These kids are going to be ready come July!! Our triathlon, Chances for Children, is on
July 27 and I plan to take lots of pictures.
I also started a home business selling the most amazing Vitamin/mineral supplement on the market today.
I started using this supplement first and within 2 weeks my elbow pain subsided and within 6 weeks, the
pain in my neck and shoulder from breaking my arm 4 years ago, was gone. Not to mention how great I feel
everyday of my life. The website is www.myvemma.com.connolly
If you are interested in trying Vemma, please make sure to sign up on my website as a member to get a
discount and rebates. Or feel free to contact me for more info or free samples. If you like energy drinks, you
have to switch to Verve!. It's the only healthy energy drink out there. It has the Vemma nutrition in it to make it
healthy for you.
So - here are some pictures - you can click on them to make them larger.
July 22, 2008
A little over a week ago, Riley started having pain in his hip/groin area on his left side. He had not hurt
himself that we knew of, so when the pain didn't go away in a few days, we went to see the pediatrician.
In doing some standard tests, he noticed that Riley was weaker on his left side and ordered some
x-rays. He was looking for something called Legg-Calve Perthes Syndrome. I waited a few more days
to see if Riley would feel better..... I didn't want to get "more" x-rays on this poor kid. The pain continued
and was getting worse so we went for the x-rays on Friday afternoon.
The doctor called first thing Monday morning stating that there is an abnormality in Riley's left hip. We
are scheduled to see the Pediatric Orthopedic specialist on July 28 at noon. I called the Oncologist to
see if this syndrome could be a result of the chemo/steroid treatment and they confirmed our suspicion
that this disease is directly related to Riley's treatments.
Legg-Calve Perthes Syndrome is a degenerative disease of the hip joint, where a loss of bone mass
leads to some degree of collapse of the hip joint, that is, to deformity of the ball of the femur and the
surface of the hip socket. It is also referred to as Osteonecrosis in adults. Basically, the bone is lacking
proper blood supply from the artery and the bone begins to die.
We are not sure to what extent Riley has this or what his treatment will be - it could be as simple as
medication (more medication- what are the side effects from that stuff?) and physical therapy or as bad
as some sort of fixture to alleviate the pressure on the hip joint or surgery. Once we know exactly what
we are dealing with, I will update the website again.
We are hoping that this will be the only residual symptom Riley will experience.
A little over a week ago, Riley started having pain in his hip/groin area on his left side. He had not hurt
himself that we knew of, so when the pain didn't go away in a few days, we went to see the pediatrician.
In doing some standard tests, he noticed that Riley was weaker on his left side and ordered some
x-rays. He was looking for something called Legg-Calve Perthes Syndrome. I waited a few more days
to see if Riley would feel better..... I didn't want to get "more" x-rays on this poor kid. The pain continued
and was getting worse so we went for the x-rays on Friday afternoon.
The doctor called first thing Monday morning stating that there is an abnormality in Riley's left hip. We
are scheduled to see the Pediatric Orthopedic specialist on July 28 at noon. I called the Oncologist to
see if this syndrome could be a result of the chemo/steroid treatment and they confirmed our suspicion
that this disease is directly related to Riley's treatments.
Legg-Calve Perthes Syndrome is a degenerative disease of the hip joint, where a loss of bone mass
leads to some degree of collapse of the hip joint, that is, to deformity of the ball of the femur and the
surface of the hip socket. It is also referred to as Osteonecrosis in adults. Basically, the bone is lacking
proper blood supply from the artery and the bone begins to die.
We are not sure to what extent Riley has this or what his treatment will be - it could be as simple as
medication (more medication- what are the side effects from that stuff?) and physical therapy or as bad
as some sort of fixture to alleviate the pressure on the hip joint or surgery. Once we know exactly what
we are dealing with, I will update the website again.
We are hoping that this will be the only residual symptom Riley will experience.
August 5, 2008.
Riley had his MRI this morning and the doctor already called to say they don't see any abnormalities in the
bones, tissue or lymph nodes. So he could have had some inflammation or a virus that caused the pain.
He has been on Motrin twice a day for the past week, so he hasn't complained of pain. We will take him off
the motrin and see how he feels. School starts tomorrow so if he is still in pain, we will know after he
spends a few days at school. Thank you for all your caring messages and emails.
Riley had his MRI this morning and the doctor already called to say they don't see any abnormalities in the
bones, tissue or lymph nodes. So he could have had some inflammation or a virus that caused the pain.
He has been on Motrin twice a day for the past week, so he hasn't complained of pain. We will take him off
the motrin and see how he feels. School starts tomorrow so if he is still in pain, we will know after he
spends a few days at school. Thank you for all your caring messages and emails.
January 3, 2009 HAPPY NEW YEAR!
Riley had his 6 month visit with the Oncologist last month. His blood count is low and his lymphocytes
are high....essentially this means that he is lymphopenic.....his immune system has still not recovered
100%. Considering this news, Riley has been extremely healthy..and I hope we don't get jinxed after
writing this! He has been in remission and off chemo for 18 months and is doing awesome. He is in
3rd grade and is getting straight A's, he turns 9 this month, on the 11th. .
Sean was promoted to Lieutenant in September and is working 2nd shift and weekends again. Luckily,
since I am not working, this hasn't been a major issue for us. We see him less, but that will change
with time.
Finton turns 12 this month, on the 15th. He is in 6th grade and is doing well. It's hard to believe he will
be in junior high this Sept...not to mention the fact that he is pretty much the same height and weight as
me! That is a scary thing to look at your child and be eye to eye with them. He eats non-stop and has a
passion for football, he plays flag right now because that is what they play in Junior high...he can't wait
until he can play tackle........ but mom can!
We hope everyone had a wonderful Christmas and Happy New Year. We wish everyone health in 2009!
Riley had his 6 month visit with the Oncologist last month. His blood count is low and his lymphocytes
are high....essentially this means that he is lymphopenic.....his immune system has still not recovered
100%. Considering this news, Riley has been extremely healthy..and I hope we don't get jinxed after
writing this! He has been in remission and off chemo for 18 months and is doing awesome. He is in
3rd grade and is getting straight A's, he turns 9 this month, on the 11th. .
Sean was promoted to Lieutenant in September and is working 2nd shift and weekends again. Luckily,
since I am not working, this hasn't been a major issue for us. We see him less, but that will change
with time.
Finton turns 12 this month, on the 15th. He is in 6th grade and is doing well. It's hard to believe he will
be in junior high this Sept...not to mention the fact that he is pretty much the same height and weight as
me! That is a scary thing to look at your child and be eye to eye with them. He eats non-stop and has a
passion for football, he plays flag right now because that is what they play in Junior high...he can't wait
until he can play tackle........ but mom can!
We hope everyone had a wonderful Christmas and Happy New Year. We wish everyone health in 2009!
June 4, 2009
I can't believe it has been 6 months since I updated Riley's website. Another 6 month visit is upon us.
Riley's blood work shows a high creatinine level - this relates to kidney function. So we have to do a
creatinine clearance test and collect Riley's urine for 24 hours, then get another blood test. This is to
double check the results and see if anything really is wrong. This could be from a number of things, but
a couple caught my attention, eating too much meat and possible onset of diabetes. We eat some sort
of meat every day, but not really red meat, mostly chicken and turkey, but since Riley doesn't like PB &
J, he eats mostly ham and/or turkey for lunch. Our doctor appt is June 11 and hopefully we can get
more answers then. I will update again after that visit. Otherwise, life is great!
I can't believe it has been 6 months since I updated Riley's website. Another 6 month visit is upon us.
Riley's blood work shows a high creatinine level - this relates to kidney function. So we have to do a
creatinine clearance test and collect Riley's urine for 24 hours, then get another blood test. This is to
double check the results and see if anything really is wrong. This could be from a number of things, but
a couple caught my attention, eating too much meat and possible onset of diabetes. We eat some sort
of meat every day, but not really red meat, mostly chicken and turkey, but since Riley doesn't like PB &
J, he eats mostly ham and/or turkey for lunch. Our doctor appt is June 11 and hopefully we can get
more answers then. I will update again after that visit. Otherwise, life is great!