Sunday, December 30, 2012

LOVE Pushes HOPE Higher and Higher

Waiting for Doc

For the last two and a half years we have made our 2.5 hour drive to the hospital every two weeks for treatment for Parker.  We are moving into 2013 with a much needed break from this schedule along with much hope for continued improvement.  Most of Parker’s treatment is at home now and we don’t have to go back to the hospital as frequent…we now go every 3 months.   In reflecting on this last year, a tremendous amount has happened.  With every hurtle we have continued with strength to take the leap of faith needed to get us to the place we need to be for our family.  Of course, Parker has been incredibly strong through all of this, but Logan has been just as strong, if not stronger.  As adults, Michael and I have tried to maintain day-to-day needs…but so has Logan. 


Logan's eyes get like this with the really bad migraines.

Logan has his own health issues with his relentless migraines this year.  This is a condition he has had since he was 5 years old and we have a very strong history of migraines in our family, but as Logan has entered his mid-teen years they have been more difficult to manage.   These migraines have not only impacted his health, but also his social life, education and stamina.  He continues to overcome and it is remarkable that he pushes forward while also supporting his brother and trying to create a balance in his life.  We are proud of the young man that he has become and his future has much promise and I am looking forward to the days to come.

Christmas 2012

We also want to celebrate Parker’s progress…this year pushed our hope higher and higher.  This year Parker has been on multiple biologic drugs to combat against juvenile arthritis.  I know that these drug names mean little to the general public (except maybe “Enbrel”) but bear with me as I process this…ready…he has been on actemra, then actemra with Enbrel and soon after he also began IVIG infusions (IVIG is a blood plasma to treat hypogammaglubulinemia and is not a biologic).  Then he took actemra with Enbrel and a round of remicaide, then he needed to stop all these (including IVIG) in order to proceed with the “study drug’s wash out process”.  During the wash-out of these previous biologics we had to up his steroids and begin the biologic kineret (twice a day) because he could take kineret up to 4 days prior to starting the RAPPORT study looking at the effects of the biologic rilanocept on systemic on-set juvenile arthritis.
Soon after starting the study, Parker’s health started to decline…yes, we are pretty darn certain he got the placebo and not the rilonacept.  Parker landed in the hospital in tremendous pain, swelling and pericardial effusion.  But looking back on all this, Parker has no regrets.  He knows he is playing a small role in impacting the future for children with JA.  Our family went into this last year knowing it was going to be a tough one.  We decided to put school to the side and be ok with hospital homebound while we worked on supporting Parker’s health.  We now feel like we are on the flip side…  What we have learned is that with each step forward…we are moving forward at a slow and steady pace…and although the journey may feel endless at times, we have felt tremendous forward propelling LOVE.

Surprise care package from Sloans via the infusion room nurses!

Thank you Ky for my special Parker Snowman!

This love has come from very unexpected places through very caring actions.  We know people lead busy lives with their own struggles and we are thankful for each and every person who has paused to show us love through your calls, emails, cards, text messages, and Facebook posts.  We are also incredibly appreciative for the actions people have taken…hugs, help with picking up Logan, meal prep/restaurant gift cards, doing laundry/cleaning, dropping by to say hi, leaving notes on the windshield, donations to the AF walk and High-5-Club, help to maintain work, comments on our blog, hospital visits, surprise packages, joining our walk team, helping fund raise, willingness to drive across the state to help us access an “out of stock” med, listening, encouraging, and validating our feelings.
We also want to thank the medical staff supporting Parker.  We know we are still on this journey…  Thank you for your passion in this field, your work is unbelievably difficult and we need more people like you in this world.  And I am not only referring to the doctors and nurses, but also all of the people behind the scenes who process the relentless amount of paperwork and insurance “overrides” because the insurance companies are not always open and willing to charter in untraveled territory.  Thank God that Parker was the first child in the state of Florida to get approval for the study drug once the study ended.  Multiple biologics failed him…this is the first drug that has had enough of an impact on him that we are witnessing some of the “old Parker” return.  When a devastating chronic illness impacts a family, you begin to try to create “new norms” and you work hard to find happiness in the little moments and pretend a bit that they are as wonderful, if not better than the happiness you experienced prior to the “disease” entering your life.  And in some ways they are…because they are felt with an increased intensity…emotional and physical pain does that to a person… But oh the JOY and renewed hope we feel with our “old Parker’s” return.  

Turning in wheelchair wheels for
skateboard wheels.
Logan and Parker are experiencing their brotherly passions again:  quirky fun, chitter chatter, planning events again, gaming together, and skateboarding…yes, skateboarding!  Logan spent his own money this Christmas to refurbish Parker’s board to make it safer for him.  He got him better wheels with a better center of gravity, bushings, bearing spacer, and stronger grip tape. 
Love is totally rolling this pair forward… and Michael and I love witnessing this…Here’s to continued happiness in the New Year.

Look Doc, I am working my stiff ankles!


  1. You are a strong young man! Growing up with any form of JA is hard and you are pushing through it with a great attitude! I've had JRA since I was 18 months old and now OA and Fibro. Keep up the positive attitude! I'll be checkin in to see how you're doing. check out my blog if you'd like. I told a story about going through school with JRA and deformities. Maybe it will help! Good luck with treatments and I hope you're having a great holiday season!

  2. Much love and happiness for the little things in life that are so simple but we sometimes take for granted!

  3. WOOT! Look at him go!!! :) I am so glad that Parker is feeling well enough to pick up his board!!! AWESOME!!! I am hoping that Logan's migraines are calming down again, and I hope that you are starting to feel some relief as well. I sure hope that 2013 is a fantastic, quiet, peaceful year for you all. Lord knows ya'll need a break! Our love to you all!