Saturday, September 8, 2012

Progress with Systemic On-Set Juvenile Arthritis and the Drug Rilonacept

Week 17 on Rilonacept...These past few months I feel a bit like I have been “holding my breath”….waiting…to exhale and release…  I have wanted to update Parker’s status but have not known how to put into words the progress….AND lack of.  This morning, as I sit and try to find the words, I am still feeling at a loss.
Our family has been through a tremendous amount of challenges, while at the same time gaining strength, connectedness, new friendships, faith, clarity on value of life, compassion, hope, and love…We are so thankful for the loving support that has come from very unexpected places and people.  There have been strangers who approach Parker at the hospital and inquire about his illness; the video game store cashier has totally connected with our boys and revealed he has RA; the children from Parker’s school (where he hasn’t been for about a year) connect with him on x-box daily; the nurse at his school still collects tabs for the hospital’s Ronald McDonald House; our co-workers check in on us and help us out at work so we can attend to the medical needs; the nurses and child-life staff that come from others areas on the floor to Parker’s hospital room just to say “hi”; the early childhood professionals in the field who just come up to me and hand me a check to raise funds for these children and their families; the other “JA” moms who send me a quick note of encouragement; and the children and babies who look into my eyes and smile filling my soul up with joy…
We also extend our deepest gratitude to the team of doctors and nurses and researchers trying desperately to find a way to help Parker…of course one would "expect" that this would be a group of people who help…but it is “how” they are supporting us and treating our son that is most touching.  This group of people has become our angels on earth.  Systemic on-set juvenile arthritis has been the scariest experience for us and their persistence and patience is never-ending.  I have wanted to yell out to everyone that Parker has made progress on the study.  Rilonacept is definitely making a difference and has helped Parker make some gains…the incredibly hard part is he has soooooo far to still go.  As a parent and a sibling, we watch and want desperately for things to go back to the “way they were”…it is this part of the disease that is relentless.  We, as a family, are coming to the realization that this disease has attacked someone we love so very much and we cannot “stop it”…it keeps attacking.  I have to believe that it is going to get better…I have to believe that the drug is somehow helping and that if we were not doing this treatment it would probably be worse…I have to believe that God will protect our son and give him quality of life…I have to believe that our love and strength will pull us through… I have to believe that a cure will come….all while we hold our breath and wait….always waiting… 

A parent wants to protect their children…it is our instinct….it is our love.  We hurt when we see our children hurt.  Parker is still struggling.  And when Parker struggles, then Logan struggles…even though he doesn’t always “say it”, we see it; feel it.  Parker has been having very “yo-yo” like days.  Some days are better than others and we live in those moments.   But our reality is he still hurts big time.  He intermittently has bruising issues (this scares him because he knows the connections of what this means).  His shoulder is now popping/clicking and sometimes freezing up (we are doing x-rays this week, possible MRI). He is still having jaw issues and I need to get him to a specialist who can make a mouth guard (at the tune of $700-900).  He needs to have his scoliosis evaluated…  He is having red lines again.  The fevers are low grade but still there.  He has red hands and feet again with peeling (usually means he is fighting something).  And his immunoglobulins are still really low.  We find ourselves dealing with the biggest, most urgent medical need of the moment, but they ALL need attending to:  the splints need stretched out (swelling makes them uncomfortable yet again), his teeth are reacting to meds, he could probably use a visit to the counselor, and the list goes on….and on…and on.
But we are trying hard not to focus on the problems (although we cannot ignore them).  He is less swollen.  He does have less rashes.  He is moving better and on some days doesn’t use his wheelchair when out.  For this we are thankful…and he is making all his hospital homebound teleclasses (no absences).  He desperately wants to go back to his school and we were told this week there are no openings in 8th at the moment and he is crushed.  But we are hoping that he continues to improve and that an opening comes up.
Parker is voicing the impact this disease is making on his life.  He is trying to look into the future with optimism.  He is becoming a little advocate for JA.  And although we try hard to not allow JA to “define” him…it is now a huge part of his life…HE LIVES WITH IT…But he is still sweet Parker…our son, a brother, with incredible drive, undeniable strength, a passionate Tampa Bay Rays fan, with techy talent, and a contagious smile.  We love you so so much Parker!


  1. So many prayers for all of you. I hope each shot brings improvement and that each week is better than the last one. I love that he can get around without his wheelchair some days. Prayers he can get back to school soon.

  2. Lentini family, you continue to inspire and amaze... we love you all so very much!