Tara, from the Arthritis Foundation, called me just a little bit ago and asked if Wesley and I would be interested in going with her to the WHOI news studio in Peoria on November 11th and then to WBNQ radio in Bloomington on November 12th to help spread the news on the Jingle Bell Run and also to help raise awareness on JRA! How great is that? I have to admit that I am really nervous about it, but I am also very excited that we are able to help get the word out! When we first became involved with the Arthritis Foundation, I never would have thought that it would have come this far for us... it's just AMAZING! I guess it is also kind of surreal and bittersweet. I wish I would be talking of "winning the lottery" or something, but yet I will be speaking of our sick child. Oh well. I have to keep a positive outlook and look at the fact that we are doing a great thing for so many kids struggling with this disease out there. We will share Wesley's story so that no child will ever feel alone battling this disease...
"Do what you can, where you are, with what you have." --Robert Schuller
Friday, October 29, 2010
Wednesday, October 27, 2010
His Story
Wesley's story began one morning in February of 2009. I believe it was around Valentine's Day. I woke him up for breakfast and noticed as he came down the stairs he was walking with a limp. I thought that maybe he had just hurt himself after wrestling around with his brother and sister the night before, but his pain seemed different. There was some swelling, but no visible signs of an injury. I called our pediatrician right away and got a same day appointment. After checking him over, she said what I had believed, no injury was present and she wanted us to check in with a Orthopedic Doctor within a few hours. After a physical examination and an x-ray, the ortho doctor sat down, looked me in the eyes and said "I believe that your son has Juvenile Rheumatoid Arthritis." My response was "Okay, so what now?" You could tell that he was concerned and I obviously didn't understand the depth of what he was telling me at the time.We were then told to find a Pediatric Rheumatologist. After several phone calls, we found a doctor in Peoria.
Wesley began months of labs work and physical testing to confirm the suspicion. We were told that a child must have a consistent 6 months of regular flare-ups before an actual diagnosis was made. We topped that with no problem. He was in pain and his little knees slowly grew larger and larger. He began waking up at night crying out that his knees felt like they were "burning" and someone was "squeezing them SO tight" and we tried everything to make it stop! Hot baths, heating pads, massages... nothing seem to work. After messing with a slew of medications that tore up his tummy, the Rheumatologist decided that we needed a stronger medication. Februaury of 2010, he was placed on Methotrexate (chemotherapy drug) to try to control the swelling and keep the disease from progressing. Wesley was in kindergarten and really started to fall behind. My husband and I along with the staff at his school, made the decision to pull him out and let him rest and try to get better. Everything seemed to work well until he was diagnosed with Pneumonia in April after developing a very low white cell count from being on the Mtx. Treatment was stopped for two weeks to allow his skinny little body time to recover.
Time went on and soon it was August. We had many, MANY appointments to follow up with his progress and all of which seemed to be disappointing. His Rheumatologist decided that his body wasn't responding well to the medication and he wanted to start treating him with weekly Enbrel injections. I had agreed b/c I trusted his judgment and began to sign papers stating all kinds of risks involved treating children with this TNF-Blocker medication... everything from infection to cancer. It was so scary. I came home and talked with my family and told them the news and right away, my mother in law said that it wouldn't hurt to get a second opinion. After some convincing, we agreed.
We soon found out that the Rheumatologist that we had been seeing was in fact and "Adult" Rheumatologist and wasn't all too sure about treatment with children. At no fault of his, he wanted to be too aggressive in treating Wesley and we honestly weren't ready for those side effects. Our second opinion came from a wonderful Doctor at Cincinnati Children's Hospital. Not only did he have a 4 hour evaluation, they brought in a "team" of doctors and physical therapists to check him over! It indeed was confirmed that he had 'Oligoarticular or Pauciarticular Juvenile Rheumatoid Arthritis" and it was most evident in his knees and hips. A physical therapist also told us that his right leg was growing more rapidly than his left leg and that it was rather common for children that had this type of JRA to have a limb longer than the other. So, we he was fitted with special inserts to put into his shoes to help correct his posture and his limp. We were SO grateful for the staff there! They truly cared about Wesley and his well-being.
Our last visit at Cincinnati Children's Hospital came on October 15th. It was for a follow up to surgery that Wesley had a month prior to drain fluid from his knees. The talk at that time was that if Wesley responded well to the draining and high-dose steroid injections, that we could begin to ween him off of the chemotherapy medication. We were so excited for him! Finally he could feel better and have more energy and maybe all of this would just subside for a little while... but, the doctors said that his knees still had fluid and stiffness and we needed to take him off of the oral MTX and start him on weekly injections and a higher dose of MTX to see if he would respond better. Apparently, the oral form of methotrexate isn't as "absorbent" into the body as weekly shots would be. So here we are... Wesley takes his first injection this Friday. Guess who gives it to him? Me. Yeah, kinda scary. I will write again this weekend and let everyone know how he is doing!
Just wanted to write a quick THANK YOU to the staff at LeRoy Elementary School. They have been there to support Wesley 110% and you couldn't ask for better teachers or friends! Becky, Amy and Nurse Jenny as well as Wendy... are an amazing group of people who are making a huge difference in this world. THANK YOU for your kindness, your big hearts and your concern with our son. We will forever be grateful. Another big THANK YOU to Nancy (like my 2nd mom) who has been there since Day 1! We couldn't have done this without you! Words can never express what you mean to me... We love you!
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
Wesley began months of labs work and physical testing to confirm the suspicion. We were told that a child must have a consistent 6 months of regular flare-ups before an actual diagnosis was made. We topped that with no problem. He was in pain and his little knees slowly grew larger and larger. He began waking up at night crying out that his knees felt like they were "burning" and someone was "squeezing them SO tight" and we tried everything to make it stop! Hot baths, heating pads, massages... nothing seem to work. After messing with a slew of medications that tore up his tummy, the Rheumatologist decided that we needed a stronger medication. Februaury of 2010, he was placed on Methotrexate (chemotherapy drug) to try to control the swelling and keep the disease from progressing. Wesley was in kindergarten and really started to fall behind. My husband and I along with the staff at his school, made the decision to pull him out and let him rest and try to get better. Everything seemed to work well until he was diagnosed with Pneumonia in April after developing a very low white cell count from being on the Mtx. Treatment was stopped for two weeks to allow his skinny little body time to recover.
Time went on and soon it was August. We had many, MANY appointments to follow up with his progress and all of which seemed to be disappointing. His Rheumatologist decided that his body wasn't responding well to the medication and he wanted to start treating him with weekly Enbrel injections. I had agreed b/c I trusted his judgment and began to sign papers stating all kinds of risks involved treating children with this TNF-Blocker medication... everything from infection to cancer. It was so scary. I came home and talked with my family and told them the news and right away, my mother in law said that it wouldn't hurt to get a second opinion. After some convincing, we agreed.
We soon found out that the Rheumatologist that we had been seeing was in fact and "Adult" Rheumatologist and wasn't all too sure about treatment with children. At no fault of his, he wanted to be too aggressive in treating Wesley and we honestly weren't ready for those side effects. Our second opinion came from a wonderful Doctor at Cincinnati Children's Hospital. Not only did he have a 4 hour evaluation, they brought in a "team" of doctors and physical therapists to check him over! It indeed was confirmed that he had 'Oligoarticular or Pauciarticular Juvenile Rheumatoid Arthritis" and it was most evident in his knees and hips. A physical therapist also told us that his right leg was growing more rapidly than his left leg and that it was rather common for children that had this type of JRA to have a limb longer than the other. So, we he was fitted with special inserts to put into his shoes to help correct his posture and his limp. We were SO grateful for the staff there! They truly cared about Wesley and his well-being.
Our last visit at Cincinnati Children's Hospital came on October 15th. It was for a follow up to surgery that Wesley had a month prior to drain fluid from his knees. The talk at that time was that if Wesley responded well to the draining and high-dose steroid injections, that we could begin to ween him off of the chemotherapy medication. We were so excited for him! Finally he could feel better and have more energy and maybe all of this would just subside for a little while... but, the doctors said that his knees still had fluid and stiffness and we needed to take him off of the oral MTX and start him on weekly injections and a higher dose of MTX to see if he would respond better. Apparently, the oral form of methotrexate isn't as "absorbent" into the body as weekly shots would be. So here we are... Wesley takes his first injection this Friday. Guess who gives it to him? Me. Yeah, kinda scary. I will write again this weekend and let everyone know how he is doing!
Just wanted to write a quick THANK YOU to the staff at LeRoy Elementary School. They have been there to support Wesley 110% and you couldn't ask for better teachers or friends! Becky, Amy and Nurse Jenny as well as Wendy... are an amazing group of people who are making a huge difference in this world. THANK YOU for your kindness, your big hearts and your concern with our son. We will forever be grateful. Another big THANK YOU to Nancy (like my 2nd mom) who has been there since Day 1! We couldn't have done this without you! Words can never express what you mean to me... We love you!
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
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