My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Monday, April 15, 2013

We Choose JOY!

We are almost at the point where we were a year ago when our plans came to a quick halt and I begin to put other things in perspective and count my Blessings. I am thrilled to share my mom has completed her surgeries and treatment from her second round of breast cancer. We choose to stay in FL and postpone our move to TN to be support for my mom. She amazes me and am so PROUD of her and her bravery.   So... Here we are again approaching the BIG MOVE to TN within a few weeks.



 It's been awhile since I've shared the latest and the greatest of this crazy disease.  Sometimes I need time to process, accept and find the strength to push forward and continue to find JOY in our lives.  Other times, I think why share?  But I do understand by me sharing our experiences, it has helped many families along the way who are also faced with making similar treatment decisions for their child and trying to understand this crazy disease.

Last year, I traveled 9,866 miles on the highways for medical treatments for Jake and Hannah. There isn't a place on this Earth I wouldn't travel to IF it could take away their pain and allow them to simply be a child.  We have been fortunate to have excellent team of specialists and we trust they are doing anything and everything possible.  The disease simply has a mind of its own and I have learned to simply find JOY everyday and count my Blessings. We have had many great outcomes and healthy reports throughout the past several months and we are ever so grateful. ( Healthy eyes, weight gain and continual growth, healthy heart reports, fewer fevers, healing broken bones, skin infections resolved, good labs and much happier days) In between those happy days, we certainly continue to be reminded of this monstrous disease it affects our family.

Within the past few months, Jake and Hannah were both put on a second biologic- combined with their bi-weekly Actemra and Solumedrol infusions. It wasn't exactly successful for either of them, and honestly just more stress in our lives. Hannah added Rituxan in November, but had reactions to treatment while being infused and required overnight admission. Then, 14 days later, she got another loading dose of Rituxan and also reacted and was admitted again to Shands Hospital.  We have choose to delay her Rituxan dosages and reevaluate with physician.


 In January, a miracle happened and we were able to get Jake approved for Rilonacept- an IL-1 inhibitor.  This medicine is very expensive and not approved yet with FDA for children with JA.  Our awesome doctor was persistent and  able to get it approved under a different diagnosis due to Jake's frequent fevers. Jake absolutely HATED these shots and cried every Friday night. You'd think through the years he'd adjust to shots, but he HATES shots. After 8 shots, insurance decided to deny  any further Rilanacept without the diagnosis of CAPS ( Cryopyrin Associated Periodic Syndromes)and he couldn't be on 2 biologic's at once.  We were aggravated with insurance to start a new drug then stop it suddenly, but Jake was THRILLED to toss the $28,000 shots. Within the same time frame, our insurance also decided massages are no longer covered.  The kids recently had  a slight change in anti-inflammatory's- switched from Celebrex 200mg 2x daily to Tolmetin 200mg 3x daily. Other than these med changes- they both continue to receive Actemra and Solumedrol every 14 days at Shands. 

In January- Jake had another round of bilateral jaw injections with arthrocentesis.  The surgeon removed a unbelievable amount of fluid ( 300+ml -left and 200+ml -right) .  He awoken from anesthesia to learn that he couldn't barely swallow or talk without gagging due to tube used for sedation. What really happened with anesthesia- we'll never know?? Unfortunately, Jake  lost 7-8 pounds post his jaw injections/surgery.
Jake doubled his periactin immediately and did everything to stop weight loss and increase po intake. The worse part of it all- these injections barely brought any relief for Jake and insurance left us with a BIG $bill$.

Good news- Hannah's collarbone finally healed and she didn't have surgery. She broke her right clavicle in TN playing on our playset in November.  It was a bad break and we got very mixed opinions from her doctor's and orthopedic specialists. Disease, medications and steroid use for the past many years didn't help the healing  process. We were pleased that after 13 weeks- it finally healed and causing Hannah no problems. She was a happy girl to fling her swing and return to dance with her friends and back on Twiggie for Horse Riding Lessons after 3+months.

Jake recently had a Gastric Emptying Scan at Shands.  We are awaiting results- but am hopeful no news is good news. He did really well eating the radioactive egg breakfast, then laying still for 90 minutes while they watch at how quickly food leaves the stomach and enters the small intestine. Jake continues to have frequent diarrhea, episodes of vomiting, weight loss and overall no appetite. Am pleased to share he has worked hard at eating within the past few weeks and has gained weight that he had lost post jaw injections.  YEA!!

If we didn't know already, Hannah has a healthy heart. We are relieved to know that she just has sinus arrhythmia and costeochronditis.  Her cardiologist feels as Hannah flares, her heart over works and creates rhythm changes. Her past two  EKG's and heart ultra sounds indicate no cardiac concerns. The heart monitors worn in the past did pick up irregular rhythms, but nothing to indicate the heart isn't functioning to capacity.   She will be continued to be followed by Cardiologist and will continue to pray that her heart remains healthy.  Jake will see Cardiologist this week- hoping he gets a similar, healthy report.

The news that I have had lots of time to process is that Hannah has now been classified and re-diagnosed to Juvenile Ankylosing Spondylitis. This should not of been a surprise to me, but just not what I wanted to hear. Hannah has had new areas of pain and includes involvement of her tendons and ligaments. It doesn't change treatment plan, just added new areas of concern. Nothing good to say here-- we just continue to hope for better days and that God will hear our prayers.  Every prayer spoken, every penny we toss, every wish we make....... We always have that one wish!



Within the next several weeks, we are having to say our good byes to many friends and medical staff, and even horses who have been such a significant part of our lives.  Last weekend, our family was able to spend one last weekend at Camp Boggy Creek with many of our JA Families. I'm trying to remember what they say, " We Don't Say Good Byes , We Say See You Later".  As we transition to TN, I know there is JOY awaiting for my family, new friendships will be made and these relationships with Arthritis Foundation, JA Families and medical staff throughout FL will always be cherished.  For all our friends, family and JA supporters, we'll see you later.






Everyday, I remind myself to choose JOY!






1 comment:

  1. Does your son have celiac disease/gluten intolerance...celiac is also autoimmune

    ReplyDelete