A Day at the Doctor’s Office, by Parker

So we went to the doctor Tuesday and well it didn't go well. First, I saw the doctor and she told me that there isn't one drug out there that will do what we need it to do for me. She said in order for me to feel better, I need to be on two biologics. The preferred ones being Ilaris and Cosentyx. The main problem now is insurance. One, they won't approve more than one biologic for me even if that makes me better. Two, I'm currently on Simponi and the insurance usually won't switch drugs until I get 2 more doses of Simponi.

This creates even more problems. One being that this drug is taken every other month, meaning it would be 4 months before I can stop taking it. Another problem with this is that the Simponi just straight up doesn't work for me. Also my doctor told the two month span between infusions is tough on many kids. She said she could try to get the insurance to move my dosing to once a month so I can be done sooner, but that’s still 2 months before I would stop taking it. So she is likely going to take me off of it all together since my systemic issues are returning and those issues are more dangerous.

I was also told that my SI joints are doing very bad. She said that even if the nerve ablations work and the SI joints don’t hurt, they are very inflamed. Now normally I don’t care what my joints look like as long as they feel good, but this time is different. My nurse told me that if we don’t treat it soon (meaning switch to a med that WORKS) they could be permanently fused and I would walk hunched over for the rest of my life. I know my doctors are doing the best they can but I can’t help but feel hopeless.

We even talked about the NIH (national institute for health) and my doc is willing to try to get me in.  But she felt that because I am such a rare situation and there aren't many like me with these overlapping conditions that there isn't enough of a sample size to do a study.  That was hard to hear.

My doc told me she prefers to take me off the Simponi and fight to get back on Ilaris. Ilaris is an IL-1 blocker and that is what is needed for my systemic issues with fevers, rashes, and internal organs.  However, I really also need a TNF blocker due to my ankylosing spondylitis, which is inflaming my SI joints and causing my back and neck issues.  I just hate insurance right now and I feel hopeless. And I was finally feeling like I was #strongerthanja.

HOME with Happiness in Our Hearts

Ever since Parker’s last hospital stay, his health has been a struggle.  We literally had to call him in sick to hospital/homebound teleclasses for the last month.  Thank goodness they were able to freeze his grades.  For the pass month, he has complained that his bones hurt and it feels like they are going to break and he has slept the days away.  We could barely wake him to take meds and eat.

We kept thinking he would bounce back because we would give him the rilonacept shot each week and he would be a bit better for a day or two…but then it would just continue to get worse and worse.  He was taking daily Epson baths and crawling back into bed.  He wasn’t even up for playing his Xbox (this is huge).

We kept trying to encourage him to get up and succeeded a few times only to see him make it to the couch and fall asleep again.  As I expressed to his doctors, this was really starting to concern me.  As I got to thinking (sometimes thinking is dangerous), I realized that it had been 9 months since he started rilonacept and I began to fear the worst…another biologic failing.  All other biologics that we had tried failed between 6 and 9 months.  And the last time he was on the verge of MAS (macrophage activation syndrome – a very dangerous complication that some kids with systemic on-set JA get), he acted similar.  So as a mom and dad, we were quite concerned about how he was presenting and behaving.  So of course, I contacted his primary pediatric rheumatologist and we were advised to come to the hospital. 

They did blood work, an MRI of his hips/groin, and meds were started.  That first night, I did lots of thinking (this time, not so dangerous…).  I realized that he has gotten worse since adding one of his two newest meds, prograf and baclofen.  So, the next day I asked if flushing and being extremely lethargic were side effects of either of his new meds.  Yes!  Prograf causes flushing and the baclofen could cause lethargy.  Then, while reviewing his labs and MRI results, we got marvelous news.  Our prayers had been answered…the rilonacept and hizentra are definitely working.  All his lab numbers look better…way better and his hips also looked good.  The meds are doing what we had hoped and are stopping this darn JA from progressing!  After further discussion, we also realized that Parker could not handle the baclofen at the dose he was at and also it shouldn’t be given with one of his other meds, which we have since discontinued.  We are already seeing a huge difference.  His is AWAKE, interacting, playing, and chitter chattering up a storm.

His doc also told us that she is re-checking his vitamin D.  Those results should come in tomorrow.  When children have extreme D deficiency it can literally feel like their bones are going to break.  So if that is the case, we simply need to increase his D.  Another great solution!  We are so happy to be home and to see our Parker looking better and feeling more alert.

Now we can focus on getting him better and better, getting back on track with school, having some fun and getting ready for the upcoming walk!  Thank you to all of you who continue to cheer Parker on and who send us positive vibes, prayers, and a giggle from time to time.  We are so fortunate to be surrounded by love.

Link to Parker's Purple Playas Walk Page:  http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=A84F7AF1A0954307A54209E85C953A06&supId=345360575

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



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!