Monday, December 27, 2010

Our Daughter's JRA Story

Ok, so this is a shot in the dark but my husband says trying to post everything about our daughter on my facebook page is just too much and that I either need to blog or start a Twitter page and I think blogging maybe a little easier so I figure I'd try it and see if anyone follows our story.

My name is Lana and I'm a loving wife to my husband, Matthew, and proud mother of two amazing children. My son, Daniel is 10 and our daughter, Sami is 6, and being the mother of my children has been tough but I wouldn't change a second of it. Daniel has severe allergies and asthma and Sami has Juvenile Arthritis. And since I'm just now starting this blog I'm going to start from the beginning.

It was moving day, May 31, 2009, and Sami was 4 1/2, our family was moving into our new house and before the move I gave Sami a bath and when I was getting her out of I noticed her right knee was swollen and she was limping. We decided I would just go to the new house and try to get her to take it easy because we didn't know what was wrong with her but she also wasn't complaining that she hurt so we thought if she takes it easy then I would take her to the doctor in the morning. June 1st I took her to her doctor first thing in the morning, her peds doctor looked at it and thought she might have broken it and also had water on it so she sent us over the the local Orthopedic. Because of it being an emergency we got in right way so I went and picked up my husband and off we went. At the ortho they took X-Rays and when the X-Ray showed clear they decided to try to drain the water off her knee and nothing came out. The ortho she saw was stumped so he sent us up to All Children's Hospital to get an MRI stat. June 2nd we headed up to All Children's for Sami's MRI. While Sami was still in the MRI room her ortho was calling us on the hospital phone telling us that she needed emergency surgery because her knee was aseptic, and the pediatric ortho that was on call would be in to speak to us soon to go over everything with us.

I was so scared, they weren't even giving us time to call our family and get them up to us. Yes, I had my husband and son, who are my greatest protectors but I wanted my mom and family there to let me know my baby was going to be alright.

So, we got to meet the doctor that was about to cut our baby's knee open in efforts to try to save her life. As we started to talk to him he looked at her knee and told us "I'm glad I didn't get back there because her knee isn't aseptic, she's "Just got JRA"" and she needed to see the Pediatric Rheumatologist at the hospital. Oh was I relieved, just JRA, no big deal. He did also tell us that she had Discoid Meniscus, which was explained in great detail and he said it was nothing we needed to worry about right now, when she's a young teen she would need surgery to correct it but for now that was fine. I called the rheumatologist the next day because it was last and his office was already closed for the day.

Sami's appointment was June 11, 2009 and by now Matt and I had done some research on Juvenile Arthritis and we were praying that we were going to hear that Sami didn't have JRA but that wasn't want we heard. Dr. N confirmed that Sami in fact has JRA but we're lucky because it appeared it was only in her knee. He told us to try to keep her as active as possible and gave her anti inflammatory medication, he also told us we needed to get her eyes checked and have them checked every three months to have Spilt Lamp Exams done to make sure her eyes weren't infected with Uvitis.

Sami's first eye exam came and went with nice and clear eyes, we got in touch with our local Arthritis Foundation and we created a great support group for ourselves. We were totally ready to take on Sami's arthritis and we rocked cause it was only in her knee.

The Arthritis Foundation gave us a scholarship to attend the Juvenile Arthritis Conference in Huston, TX, and it was that flight that we first saw our little girl stiff and in pain. That flight was horrible for her so as soon as we got checked in we took her to the pool to try to loosen up her knee. It was that night at the "Family Dinner" that we meet a few more Florida families, and had our lives changed forever by their stories. The conference was amazing, Matt and I were like sponges trying to soak up as much as we could, and when we left we felt well informed but also left with some great friendships.

When we got home Sami started to complain that her shoulder and neck were hurting and then we noticed a "fat finger" so we headed back to her doctor and he informed my husband and I we were going to have to start giving Sami weekly injections of a medication used on people with cancer, SERIOUSLY. And then it was time to take her to her eye doctor again and this time we were hit with the bombshell that Sami had Iritis in her left eye and her cornea was attached to her lens. Because of how severe her eye was so quick her doctor wanted to be aggressive, so we started hourly steroid eye drops and dilation drops 3x a day after about 2 weeks we were able to start cutting down on the drops but after a few months with her eye still inflamed her doctors talked and decided we needed to start treating systemically with a mediation called, Remicade. Remicade is a super scary drug, it meant that we were going to have to go up to ACH every four weeks and have her get an IV with a medication that is 75% human DNA and 25% mouse DNA and cause a greater risk of cancer. Yes, you read correctly, or we had the choice of not treating her and her go blind. So Sami is now on Remicade and has been for a little over a year.

And as I said before we created an amazing support system and in doing so we created a team for the local Jingle Bell Run/ Walk for Arthritis, we are Team Chicken and because of our support system we were about to raise over $10,000 in 2009.

2009 finally came to a close, we thought things could only get better because of all the medications our baby is on. By her March eye doctor appointment there were only a few lonely cells left and her eyes were looking great, and she was moving like she did before everything took place. I was so happy to have my baby girl back.

In March our family also traveled up to Washington DC for the Arthritis Foundation's Kid's Summit. It was then we got to tell our story up on Capital Hill and be the voices of many other families in Florida. Sami is pretty shy when you first meet her, that's how she got the nickname Chicken, so it was her big brother who spoke load and clear on her behalf, I was so proud. But when we got some real one on one time with our Congressman that Sami opened up and she told him how it was to be so little with such a big illness. My husband and I came home as very proud parents.

In June we found out that we had received another scholarship to attend the JA Conference in Philly, I was again a sponge. And this time we got to meet a few more families that we had met on facebook though the Arthritis Foundation. I was a bit nervous about leaving because my grandfather was very ill, but he told us to go and learn all we could. It was 2 weeks after we got home from Philly that he passed. I was so close to my grandpa and I felt like my life had been turned upside down. And I don't know if it because of what all was going on but Sami's September Rheumy appt. really shocked me. It was at the appt the her doctor added both wrist, all fingers, both elbows, and her other knee as infected joints. I still don't understand how I missed them, I'm her mommy and I should be able to spot those things.

It is now December 2010 and she is having hip issues and her knee is also in a lot of pain again and after her Rheumy appt 2 weeks ago her doctor has raised the amount of Remicade she receives and is sending her for hip and knee X-Rays, but because of the holidays I promised my husband I would make the appt for after the holidays so she can have a nice break from school instead of spending it at the hospital. Dr. N, her Rheumy also believes that it maybe time to have her Discoid Meniscus fixed since having arthritis her knee is different than that of a normal 6yr old. So we will start out our New Year having everything looked at and a possible first knee surgery. She goes on January 11th for her consult and X-Rays so I will update you all then.

I hope you all have a safe and great New Year!!!!


  1. Great makes you feel good to get it down. Plus it is so important to hear all stories. I too see Dr. N and think the world of him. Im sorry she is not feeling well at this time

  2. Good job Lana!! I love blogging. It's another great way to connect with others like us as well as a great way to create a timeline for ourselves to look back on.

  3. Hi so sorry for what you are going through... My daughter is 4, she was diagnosed at 18 months with Jra, pretty much all of her joints were affected unti we started Enbrel last year... Praying that the find the right meds/ dosage So she will feel better soon :) I Also hAve a blog ...

  4. Hi Lana, thanks for sharing your story. Us moms and dads have to stick together. I hope chicken is staying warm...this is a hard time for our kiddos...sending hugs.

  5. I remember in Texas meeting you and Chicken and your hubby! You are doing an amazing job being a mommy to two children with health needs. JRA is not a easy path. You never know what the afternoon is going to be like- never mind tomorrow! Hang in there...Im so glad we have each other on this journey!

  6. I just read your story and all I can say is wow…my daughter, Bevin, is 1, she will be 2 in February…we noticed a limp and brought her in to see the doctor, she was diagnosed with JRA the week before Thanksgiving of this year. At first it was a “positive” diagnosis (they thought it was Leukemia) and should clear up after a week of anti-inflammatory drugs…no such luck. Bevin had her first Peds Rheumatology appointment on 12/6 and her first eye exam on 12/23. As of right now she is on Naproxen twice a day and has been for over 3 weeks with no change…we have to blood and urine tests every 6 weeks and will go for a follow up with her Rheumatologist in mid-Jan and see where we go from there.

    Being new to this, being able to read other blogs is extremely helpful…I’m hoping to meet more families to connect with.

    My thoughts are with Sami and your family.

  7. Thank you all for your support. It's so nice to have each other to lean on

  8. When Emily was first diagnosed on January 10, 2008 the first thing I did was look for other people's stories. I truly believe that we can really help other people, have an impact on other people's lives just by blogging. You & your family have already done an amazing amount for the cause. I think ya'll rock! :) (And blogging becomes addictive after a while...) Thanks for sharing!