Juvenile Arthritis Awareness Month

Since July is Juvenile Arthritis Awareness Month, I thought I would share some of Olivia's story. So, here goes...Olivia was diagnosed with SJIA/MAS at 10 months old. It started with a rash that lasted about a week. During this time the rash would almost disappear during the day and return at night. She was also experiencing fevers that would fade during the day and return at night. We had made several trips to see her pediatrician and at first they just thought it was a virus. After a week of this, they did some blood work and found that her WBC (19.5) was extremely high. They were still thinking it was due to a virus and said to monitor her over the weekend and return on Monday if she wasn’t any better. This didn’t seem accurate to us because she wasn’t showing any other symptoms that would make us believe it was a virus.

The day she was admitted. -2014-

We returned to the pediatrician on Tuesday and they did labs again to check her WBC and it was even higher (30) than it was on Friday. Unsure of exactly what was going on, he recommended we take her to the closest children’s hospital. We ended up seeing Infectious Disease, Rheumatology, and Hematology while there. Since Olivia couldn’t walk yet, we were unsure of any joint pain. She never seemed like she was in pain at all, but they did point out some areas that looked swollen. While there, she underwent a Bone Marrow Aspiration, a Lumbar Puncture, a TB test, a PICC line in her arm, lots of imaging, and lots of blood draws. She stayed in the hospital for three weeks total. We were there a whole week before they had an idea of what was going on. They began daily injections of Kineret and some steroids the second week and it cleared up her rash. They had sent off some genetic testing that tested for HLH also and she was put on extra medication for that until results came back. At the end of the three weeks, she was sent home on high dose steroids, Actemra infusions which were every two weeks at the hospital, Dexamethasone, and Cyclosporine.

This is Olivia now. -2017-

As she continued these medications at home, she began getting really puffy from the steroids and the Cyclosporine was causing hair growth. Our precious girl didn’t look like herself anymore, but she didn’t let any of that get in her way. She was always making us laugh no matter what she was doing. We were eventually able to wean off of some medications and change others. She ended up having an Anaphylactic reaction to Actemra, so we switched back to Kineret because it worked well for her in the hospital. Her HLH testing came back and it showed she just had MAS.

She’s now 3.5 years old and has had a few flare-ups with MAS, but we have been quick to get it under control. She is currently on Ilaris once a month and Prograf daily. She is very active and has shown that she loves swimming. We weren’t sure that she would ever make it to this point, but she’s showed us just how strong she is. If your interested in donating to The Arthritis Foundation, you can visit here. Olivia received a Power Pack a few months after she was diagnosed and really enjoyed opening it. She loves Happy Mail. If you haven't heard of it and have a child with Juvenile Arthritis, you can sign up here. Last but not least, if you want to raise awareness for Juvenile Arthritis, you can shop their site. We've ordered bracelets and I love their shirts. :)

Brooklyn's SJIA Story

I've been wanting to tell Brooklyn's story for awhile, but every time I get close to working on it, I get nervous. It's not OUR story, so I get scared that I might miss something or tell it wrong. You might notice Brooklyn's story is much like Olivia's story, but it clearly has it's differences.

Brooklyn is currently 3 years old. She is a very spunky little girl that loves playing outside and Sophia The First. They are currently staying with her grandfather in Texas. Brooklyn receives care in Dallas which is an hour drive from their current residence. Brooklyn was recently approved for Make A Wish and they will be making a trip to Disney in a few months so Brooklyn can meet Sophia. We also get to meet them for the first time since they will be an hour and half away from us!! :)

I first met Brooklyn's mom, Samantha, through another mom who's daughter had HLH (Hemophagocytic Lymphohistiocytosis) At the time we were both waiting on genetic testing to come for HLH. The Rex family was living in Durban, South Africa then and had been traveling to Cape Town, South Africa for most of Brooklyn's care. Not only was it amazing to be able to speak to someone who knew what we had been going through, but we also looked to each other for support. Just goes to show how awesome social media is that you can meet someone so far away and end up finding a best friend.

Brooklyn was first hospitalized in April 2014. It all started with a rash and a fever. Her rash would come and go and get worse at night. Her fever, however, lasted for about a month. Medicine eventually would not even keep it down. She was tested for everything and was even first treated for Kawasaki Disease. When her body stopped responding to the medications for that, her doctor recommended testing for HLH. Testing for that included a Bone Marrow Biopsy and a Lymph node Biopsy. Testing for that came back positive for Macrophage involvement. Researching further, they came across Juvenile Arthritis. Through both of those they were able to find out about Macrophage Activation Syndrome (MAS). MAS is very serious and can cause life-threatening issues if not treated. Since there was not a physician in their area that had dealt with any of the mentioned diseases, they made a decision to fly to Cape Town to be evaluated.

Once they arrived in Cape Town and Brooklyn was evaluated by the pediatric rhuematologist, he said she had the worst case of Systemic Juvenile Arthritis he had seen yet. SJIA isn't something that just goes away, there is no cure. She was started on Methrotrexate, which is a form of chemotherapy, as well as, high-dose steroids and Cyclosporine (which helps with the MAS.) They had also spoke about starting her on a biologic. At the time, they discussed Kineret, which is a daily injection. This specific drug would cost them around $4,000 a month. Because Brooklyn needed this medication to survive, they made the choice to put on her this drug and do whatever was possible to have her treated. Since this medication is not something they could get in South Africa, it was shipped to them from the UK. They ended up taking her off of methotrexate pending genetic testing.

Fast forward a few months later, Brooklyn had been doing well up until she woke one morning with joint pain. She had also began getting rashes almost daily. They were under the impression that Kineret was no longer working for her. Her rheumatologist decided it would be best if she try an infusion called Actemra. Since this medication had to be administered every two weeks, their only choice was to move to Cape Town temporarily. [Olivia had been put on Actemra also when she left the hospital] Brooklyn had been doing well on Actemra, but was due for her third dose. Unfortunately, this medication caused her to have an anaphylactic reaction during this appointment. There was another medication she could try, but it wasn't something that was easy to be shipped to South Africa and Brooklyn didn't meet the age requirements for it yet. Their only option was for Brooklyn to start Kineret again and raise the dose of that and her other medications.

They had spoke to Brooklyn's grandfather a few times regarding possibly coming to the United States for care. It was clear that she was not getting the medical care she needed in South Africa anymore. Unfortunately, all of Sam's family and some of Darryn's live in SA, so that meant leaving them for awhile. But, when they found out Brooklyn was eligible for a consultation at Cincinnati Children's hospital that persuaded them to try it out.

After arriving in Texas, they made appointments with doctors in Cincinnati and tried to find somewhere to stay while being up there. Brooklyn was seen by a nutritionist, as well as, physicians from hematology and rheumatology.  She had labs done and also genetic testing done by them. After running out of funds to stay there and getting an estimate of how much it would cost to stay there for care, they packed up and went back to Texas. They were still waiting on genetic testing results. A few weeks after being back in Texas they received results and it showed Brooklyn didn't have any genetic mutations for HLH. With that being said, Her diagnosis would then be Systemic Juvenile Idiopathic Arthritis with complications of MAS.

Brooklyn started Methrotrexate once again, but was weaned off of cyclosporine and steroids. Brooklyn has been doing better, but every day is a struggle because her medications suppress her immune system. She can't go out and play like other kids. They have the constant worry about her getting germs and becoming sick all the time.

They are really struggling financially when it comes to household items such as cleaning supplies, diapers, wipes, and groceries. They don't have their own car so they have to borrow family members whenever they need to run errands or go to appointments. It's been vey rough adapting to living here and not working. They are here on a visitor visa which has to be re-applied for every 6 month's. They have to re-apply through their attorney that is here. They pay an additional $2,500 a year for that service. They are also still paying for Health-Aid back in SA because they aren't sure when they would have to go back. I have contacted a few local groups here in the US, but haven't been successful in getting any assistance for them which just breaks my heart. I was able to reach out to a sweet photographer in their area and she took some recent photos of them. [YAY!] If you have any ideas or if you know someone in the Dallas area that would like to help fundraise for them, please let me know. Also, if you'd like to send them anything, I can help you get in touch with them.

Here are some links to their pages:
Facebook: facebook.com/hopeforbrooklyn
Website: Brooklynrex.com
GoFundMe: gofundme.com/hopeforbrooklynrex (The money shown in the amount raised is not the amount they currently have. It does not reflect what has already been used)