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!

Saturday, November 24, 2012

Thankful Reflections of Our Continual HOPE

The house is quiet and still as I reflect on our JA journey thus far.  This has definitely been the “road less traveled by…” On our voyage, we have met the most amazing people, witnessed the deepest strongest random acts of kindness, been touched by supportive and energizing love, and through it all, our hearts have been overflowing with hope each step of the way.  Truly all these blessings are multiplied over and over again as we meet children and their families who ride alongside us.  And for those who choose to continue to love and support us, your lives are also forever touched by the beauty that JA can bring…

Yes, I said “beauty”…so many open and loving hearts pour out that beauty and as much as I try to explain it…this beauty can only be felt…it is indescribable.  Our family has experienced immense pain…we know of children who have passed away with the form of this disease that Parker has…Parker has processed those questions and concerns about death.  He has talked about heaven and being “pain-free” with no more sticks, swelling, over-taking fatigue, and being able to “play like other kids”.  That is a very profound thing for a family to discuss but a healthy discussion when it is a real feeling.  Parker has been as positive as possible through all of this and his wit and smile are contagious.  Those of you who have looked in his eyes know exactly what I mean.  Our struggles with JA have allowed us to feel true beauty.

For more than 2.5 years, we have made our two and a half hours ride every other week up to the hospital for Parker’s treatment and medical care.  For about four years, systemic JA has attacked our son.  We are joyfully sharing that we are witnessing PROGRESS!  Parker’s doctor has figured out a way to get his IVIG infusions at home.  This Sunday will be his third weekly infusion and last week, with the changes that were made, I am happy to report that he did not have an allergic reaction this time.  His weekly shot of Rilonacept is also doing what we had hoped…it is really beginning to calm his JA down. 

Since starting the RAPPORT study on Rilonacept, Parker’s intermittent fevers have ceased.  We are seeing less skin rashes too.  And in the last 2 weeks, we are also seeing less swelling around his joints, especially his ankles, and his vasculitis is less intense.  This progress has allowed us to start decreasing his steroids (after 2.5 years on them) and Parker is walking more and more.  And once he got past the “placebo” phase of the study, this disease has stopped viciously attacking his internal organs.  I know study drugs are scary…because we don’t know long term what the drugs do.  Our family has chosen to “live in the moment”…we KNEW the disease was attacking our child’s body in a very fierce way…Parker’s doctor recently mentioned that if we hadn’t done all these biologics (even the ones that didn’t “work good enough”), she is pretty certain he would already have contractures…and I hate to even begin to think what it could have done to his heart, lungs, lymphatic system, intestinal track, vascular system, muscles, skin, and who knows what else because nothing is the body is immune to systemic JA.  It is a very mean beast.

Some other celebrations since the RAPPORT study and reintroducing the IVIG infusions that you will be excited to hear about are:  Parker has bravely spent the night at a friend’s house and is planning to go to another friend’s house this Friday night.  He has not been doing sleep overs for the past 4 years.  We have to also be thankful to these families who invited him over because I know all his meds are a bit overwhelming J.  He is going to finish the year out with hospital homebound as we work on getting his levels up some more, but he is really talking about starting high school AT school and the principal is being quite supportive about meeting his needs.  This is humungous.  Parker is also able to maintain longer conversations…I know that sounds like a crazy thing to celebrate, but now he talks with his enthusiastic fun-loving voice again.  He is engaging, excited, and more energized.  It is such a beautiful voice to listen to.  There are also other, simple things, that most take for granted…but not us…Parker can cut his own food again, can shower independently these last 2 weeks, wants to try going to an amusement park again, can dress more often without our help, can eat without intense stomach pain nor food getting caught up in his throat, gets excited about “parties” again, is having less nightmares, is asking to have friends over again, and he seems to be getting stronger muscles.

We know that this journey continues for Parker and it is likely to be ongoing but we are so very proud of his strength and bravery.  Do you know that he is even sticking the 3 needle probes into his own stomach for his weekly home IVIG infusions?  WOW!

Someone once told me, during one of Parker’s hospital stays this last year, that they didn’t like the word “hope” because it didn’t sound certain, definite and that “faith” was a better word to use when you have a child with chronic illness.  I have reflected on that statement for about a year and I am pretty certain that “hope” has been the perfect word for OUR family.  Hope has kept us going during much uncertainty where nothing has seemed to have a definitive answer.  And during a year of what seemed like endless uncertainty, we are certainly thankful for much… And we will continue to faithfully HOPE!

Thursday, November 15, 2012

Parker Defines a Hero…

What defines a hero? This is a question we are often asked in life. A hero can be anyone from someone making you happy when your sad to a super hero like Batman. Every body has their own definition of a hero, but in my opinion anyone can be a hero, even you.
    A hero can be defined in many ways. For example a hero can be just a person who inspires you. In my case I am a 13-year-old kid with arthritis and some of my heroes are the little kids that are like 4-8 living with it. These kids inspire me a lot because they have had excruciating pain their whole life and they don’t know and may never know what it is like to be a kid and just have fun. A hero is also someone who keeps a positive attitude no matter what. My mom always says I’m her hero because with everything I go through I can still maintain a positive attitude.   She says, “Parker you are my hero because you might be little but your enormous strength shines through with every smile and with how you inspire others.” A hero can also be considered someone who risks their life or sacrifices it for the good being of others. The best way I can describe this is with our troops fighting the war. They risk their lives every day some even die just so their county can stay safe and have freedom.
    There are many examples of heroes out there but my biggest hero is Ben Zobrist of the Tampa Bay Rays. I met Ben through my Make-A-Wish in 2011. My wish was to meet him, but he did not only talk to me; he took time out of his practice to introduce me to all the players, give me a tour of the locker room, and play catch with me. But this is not the only reason I consider him a hero. The main reason I consider him a hero is because on May 5th 2012 I had the walk for arthritis. I thought it would be just like any other arthritis walk but then Ben Zobrist appeared. It wasn’t just him; he actually brought his whole family with him.
Normally when you meet a celebrity they just forget about you but he didn’t. He actually came to my walk and stayed and talked for 2 hours. Then a month later, I was put in the hospital but when I got home Ben and the Rays had sent a box of Rays bobble heads and an autographed bat. Then on my birthday I emailed him and told him I was going to the game and he actually came on the field and waved to me. And I know he did because he emailed me back saying “I saw you at the game today.” But it isn’t just the things he did for me that make him a hero. One big thing is that he plays every position on the field and strives to do his best at all of them. He also has strong Christian faith and his wife is a Christian singer. He is also a great father to his 2 baby children. Something that truly makes him a hero is that he is a good person a wonderful dad and a fantastic role model for all children.
    Now that you know what a hero is, let me explain to you what a hero is not. A hero is not selfish, and what I mean by that is he is not someone who does all the good things he does just so he gets good publicity. Or just helps someone he likes. Or even just helps someone because it benefits him. Also a hero isn’t always someone in tights like batman. I’m not saying batman isn’t a hero but what I am saying is a hero isn’t always someone in tights; a hero could be a old lady helping a boy up after he fell. I feel like a lot of people think that a hero has to be a super hero like batman when in retrospect anyone can be a hero.
    So a hero is someone who inspires you, like Ben Zobrist. A hero is also someone who always keeps a positive attitude through everything. A hero is also someone who risks or sacrifices their life for others. A hero is not someone who is selfish and not necessarily someone in tights. And that is how I define a hero.

Sunday, November 4, 2012

Our Most Valuable “Playa”, Parker: Thankfulness Sums It Up!

Thanks Ashlynn for
his very own Boggy M&M!

A quick update to get all of you up to speed on the Purple Playas’ most valuable “playa”:  Parker!  We are so incredibly fortunate to have a team of doctors, nurses, and medical office staff that powers on right along-side of us!  Through our appeals and persistence, Parker’s study drug, rilonacept, was approved through April.  The office manager said she thinks he is the first kid in Florida to get this approved.  Maybe now other insurance companies will jump on board and get this for the many others who also need it!  Truly the miracle we were hoping for!  We were so concerned about going backwards but now we can continue to move forward!
Another great piece of news is that this Friday will be his last overnight stay at the hospital for his IVIG infusion.  No he is not discontinuing it but rather he will be getting it at home weekly and a little bit differently (not through his port or IV).  The version he is getting is called Heizentra.  If I am understanding it all correctly, this is why:  by getting it weekly in a more concentrated but slower absorbing manner he will have less side effects and hopefully also better results.  This is because there will be a more constant level in his system.  There will be 3 probes (little needles) placed in his stomach and hooked to a small pump.  It will run for 1.5 hours each week and he can do other things while it is pumping in (tele-class, TV, Xbox…).  It also means less hospital stays, road trips to the hospital, and hopefully no more blasting headaches from the med.  He will also learn how to do it himself.   If we can get his levels up, he will also be able to be out and about without so much worry that he could easily catch something and land in the hospital.  Way huge!  We are very excited about this, especially knowing now that he is likely to be on this for life.  This will give him some normalcy back and empower him.  And we will all get to sleep in our own beds more often J!
We appreciate everyone who has rallied around us and supported us during all of this uncertainty.  We are incredibly thankful for your prayers, thoughts, and positive energy.  We know that Parker is an incredible and valuable “playa” and we are so happy you all are part of the Purple Playas Team!

Friday, October 26, 2012

From the Voices of Families….

Recently I asked families of children with Juvenile Arthritis, if there was anything they wanted the general public to know about JA what would it be…This list below is a paraphrased summary of their very heartfelt responses.  Just a window into the lives we live, thoughts we have, and strength our children possess.  From the voices of families…
·         Juvenile Arthritis is not an old person’s disease, it’s autoimmune
·         It affects internal organs, not just joints
·         Our children are not “fine”, just because you look good or are smiling
·         It hurts, even when smiling
·         It is more than just hurting joints
·         It affect joints AND muscles, skin, internal organs, personality, mood, emotions, and engagement/activities with others
·         It can be as bad as cancer…just because my child is not bald doesn’t mean he/she is not suffering
·         Kids do not always grow out of it when adults
·         Kids’s with JA can be as severe and worse than adults’ RA
·         There is no cure
·         It is not an old person's disease - it is an autoimmune disease!
·         it affects more than our children's "health" affects school, their relationships, their play, their quality of life...
·         it can attack anyone, at any time and we don’t know why
·         during one hour of the day they can look fine, and an hour late it can hit them hard
·         it can blind, cause deformities, and even kill
·         it does not discriminate
·         We also don’t know what these drugs will do to their bodies down the road.  Will they be able to have children?
·         It affects not only their health.  It impacts their school, relationships, play, and quality of life
·         Praying for relief so my child can live a normal life…for some this comes, for others it takes much longer, and yet others continue to have bumps in the road and struggle.
·         If the cure was spices, vitamins, and other crazy mixtures, all these children would already be cured
·         The roller coaster ride is never ending…bad days, good, days, emotions, doctors, stress, expenses, meds, remission, active disease, medicated remission, …and yet life continues to go on and we try to enjoy life and a happy childhood.
·         We do everything we can to let our children be children
·         It is not the same as grandpa’s arthritis, which is osteo….this is autoimmune and my kids may be cute but they hurt BIG time.
·         When people think our kids are fine and question our requests for prayers because they look fine, it is hurtful.
·         Brothers and sisters become fearful, emotional, and wonder if they too will get this.
·         The amount of chemo our kids use over their life-time is more than some cancer patients
·         You see my child smiling…I see my child when he/she cries, gets blood work, can’t sleep, goes through physical and occupational therapy, sleeping with splint on their wrists/ankles, getting ongoing IV’s, getting MRI’s, CT scans, xrays, joint injections, scopes, surgeries, shots, throwing up, in pain, with swollen joints, with fever, with rashes, struggling to walk, and yes…I too see my child smile and am so thankful that through it all he/she finds a smile.
·         It affects every child differently.  It’s an autoimmune disease and can be mild to severe and chronic and can be different from day to day
·         It strains a marriage, couples, relationships
·         It’s hard to balance between children
·         We advocate, educate…so others will begin to understand
·         We experience many financial burdens
·         It is hard to admit that I can’t “fix it”
·         A normal life is a struggle
·         Our kids miss out on things that their friends are doing, either because of their health, because of treatment, or because they cannot be around others with a flu due to a compromised immune system
·         There are over 100 kinds of JA
·         It affects our careers/work
·         It comes out of nowhere…one day you have a healthy kid, then you don’t
·         Some children are old enough to understand the seriousness of their disease…and the young ones who don’t understand are also scared
·         For those with severe forms of JA…kids face their own mortality…talk about dying
·         They ask us many difficult questions, some that we don’t have answers for
·         Some children talk about wanting to go to heaven so they won’t hurt anymore
·         We live in the moment, not thinking too far ahead
·         The drugs cause many side effects sometimes causing a need for more drugs
·         The alternative to not taking drugs could have grave consequences
·         The continual fatigue is the hardest
·         This disease steals “time” from all of us…
·         My child is losing their hair…and prior to her losing her hair, people didn’t realize how serious this disease can be.
·         We often hear…at least it isn’t _____...but hearing this does not make this disease better to families who live with it because it is affecting our beloved children.
·         This affects the whole family….these are our children...It's a full on battle everyday!
And yet through it ALL…our children
·         Endure it all
·         Are incredibly brave
·         Know a lot about compassion
·         Experience the depths of love
·         Are amazing
·         Are young
·         Want validation
·         Need encouragement
·         Want a voice
·         Do know how to have fun
·         Are overcoming tremendous obstacles
·         Are thankful for each other
·         Are blessed to have incredible strength
·         Can smile
·         Have a much better chance with better drugs…but more research is needed
·         Are strong
·         Hope for a cure
·         Want you to tell someone…everyone…raise awareness…please…

Friday, October 12, 2012

We Spent WORLD Arthritis Day at the Hospital

We had our visit today with the doc and we are still here at Shands Hospital since it’s IVIG infusion day/night.  The good news is it’s just an overnight stay.  Parker’s doc is amazing and we are so fortunate to have her helping our kiddo.  She talked with the principal investigator physician for the RAPPORT study and bought us some time.  She got an additional 4 weeks’ worth of med.  I thought I was losing my mind a bit because I could have sworn we had until the end of December with drug.  I really thought that was what we signed up for…come to find out…YES, that is what we signed up for but because they are running out of money to run the study, we were going to be cut after the trial run was complete.  It really seems unfair on so many levels…but we are thankful for the additional time.  His doc is so very upset by this…she felt that he should get it because so many biologics have failed him but she can only do what she can do and we are frustrated right alongside of her.
In the meantime, an appeal was filed.  We are also going to appeal as parents too.  And his doc is going to call the drug company to see what can be done.  She is also contacting one of her connections at the National Institute of Health (NIH) to see if Parker could be seen up there.  We are feeling a bit desperate.  We do not want to see this disease attack his organs again.
We also talked about trying to decrease his steroids to see what happens.  We have a sense that the steroids might be holding some of the symptoms back.  So we will test that while he is still on the rilonacept.
Also, since Parker is going to need IVIG on an ongoing basis, his doc is going to try and set up home infusion…she said it kind-of works like an insulin pump.  He would get it once a week and it would run for 1.5 hours and infuses in the stomach.  There are a few advantages to this:  we would get to be home; and he would get more continuous levels of IVIG.  For those of you who are not aware, IVIG is an infusion of around 2,000 donors’ blood plasma.  This helps his immune system that is definitely not working correctly.  So we will see about that too.
If Parker cannot continue on the rilonacept and cannot get into NIH, then the only choice left is to go “backwards” and put him on what he has been on before and probably multiple biologics.   As for the symptoms that have returned…we will continue to monitor his temp, Raynaud’s, systemic rashes, and his vasculitis.  She said he has “hot spots” with his vasculitis.  And if by some miracle, he gets to continue on rilonacept long term he may still need to alternate it with another biologic because this darn disease seems to be outsmarting the drugs yet AGAIN!  Yes, it is crazy and we so want to see Parker comforted and feeling better.
Parker was super scared today and totally freaked when they told him he was going to have to share a room tonight with another patient (sweet kiddo by the way).  And even through all his fear, Parker was also super sweet…he asked the doc to come back so he could give her a hug.  He gave her a long hug and he cried.  He loves her so much and he knows that she is really trying hard to help him.  So please continue your prayers and encouragement.  We appreciate the support more than we could ever ever express.

Tuesday, October 9, 2012

Trying Not to Let Fear Take Hold...Trusting All Will Be OK

Fear can seem to momentarily paralyze us…Michael and I feel like we have been hit hard in our gut and the wind has been knocked out of us.  The last few weeks have been tough to digest.  Parker has seen progress on the RAPPORT study and for that we are incredibly thankful.  However, he is not doing as well as the other children on the study and we have seen the return of some classic systemic JA symptoms.  But today, it was made official… we cannot get the drug approved for continued use after the study and next Friday is his LAST day of the study. 
I broke the news to Parker and he totally withdrew and told me to leave him alone.  So I honored his request…as hard as it was, because this was not his typical reaction to bad news…  About 40 minutes later, one of his hospital homebound teleclasses started and when the teacher asked him how he was doing (like she does with each student during role call), he could barely squeak out “not too good”.  She said he could just listen today.  He said “ok”, muted his mic, and burst into tears.  All I could do was hug him…
Even before he voiced his thoughts, I knew what he was thinking.  He is scared of regressing even more.  He is scared he will have to go back to multiple biologics.  He is scared it will attack his lungs or heart again and he will be hospitalized.  He is scared he will be back on 2 infusions a day of kineret.  The day that we had his Arthritis Foundation Walk (May 5) was quite the celebration because that was the last night of his kineret infusion.  That night we made about a 10 minute video in case other families wanted to see what our twice a day routine entailed.  
He has been through so much such then….
During our last visit to the ped rheumy, we also had confirmation that he does have hypogammaglobulinemia and it is NOT due to his use of biologics but his messed up immune system and we were told he would probably need IVIG infusions for the rest of his life.  She also shared that she really feels he also has psoriatic arthritis in conjunction with is systemic on-set JA and all the other overlapping stuff.  And although he has been back on IVIG, his numbers are not increasing like she would like them to.   It is incredibly frustrating and concerning.
We are processing a lot right now.  Michael is coming with me on his next overnight infusion of IVIG this week, so we can talk about next steps and try to make quick decisions.  We are trusting all will be ok and trying not to let fear take hold of us.

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!

Wednesday, July 11, 2012

What do YOU think of when you hear the word “ARTHRITIS”?

When I was younger, if I didn’t know the meaning of a word, my mom would say “look it up”…well, I decided to look up “arthritis” for the fun of it…

Merriam-Webster dictionary defines arthritis as: “inflammation of joints due to infectious, metabolic, or constitutional causes; also: a specific arthritic condition (as gouty arthritis or psoriatic arthritis)”

Let’s dive in a little deeper… Most of us hear the word arthritis and think of the form called “osteoarthritis” and yet we use the word “arthritis” as if it is interchangeable with the word “osteoarthritis”.   We all know someone, usually an older person, who has arthritis…in fact, it is so “accepted” as the norm that many elders will say something like “oh, it’s just my arthritis acting up” if you ask why they are moving with caution in some way.  Our culture/society expects this because it’s only natural as one ages.  But why do we accept pain as acceptable…it’s not something anyone should have to experience.

Merriam-Webster dictionary defines Osteoarthrtits (OA) as:  arthritis typically with onset during middle or old age that is characterized by degenerative and sometimes hypertrophic changes in the bone and cartilage of one or more joints and a progressive wearing down of apposing joint surfaces with consequent distortion of joint position and is marked symptomatically especially by pain, swelling, and stiffness—abbreviation OA; called also degenerative arthritis, degenerative joint disease, hypertrophic arthritis”

OA is NOT what children with juvenile arthritis have!  Juvenile arthritis is a form of rheumatoid arthritis and more specifically is differentiated from OA because it’s an autoimmune arthritis.  Juvenile arthritis is not NATURAL in any of its various forms.  Yet, many families experiencing JA have heard at one point or another, something to the effect of “Oh, I know about that (referring to JA), I get arthritis in my …” or “My grandma has arthritis…” or  “I had tennis elbow and that really hurts…”  All of these comments are very well-intended.  They are a way of showing compassion or an attempt to relate to a disease that many know very little about.  But as a parent or a child/teen dealing with the disease, these comments are incredibly frustrating to hear spoken aloud because we painfully know that osteoarthritis is not synonymous with Juvenile arthritis in any way shape or form; except that they share one commonality in that the diseases both affect joints.  Juvenile arthritis (also known as juvenile idiopathic arthritis and juvenile rheumatoid arthritis) is an autoimmune disease.

Merriam-Webster defines rheumatoid arthritis as:  a usually chronic disease that is considered an autoimmune disease and is characterized especially by pain, stiffness, inflammation, swelling, and sometimes destruction of joints—abbreviation RA; called also atrophic arthritis”
and autoimmune is:  of, relating to, or caused by antibodies or T cells that attack molecules, cells, or tissues of the organism producing them”

and atrophy (verb: atrophic) is:  “decrease in size or wasting away of a body part or tissue; also : arrested development or loss of a part or organ incidental to the normal development or life of an animal or plant”

Juvenile arthritis (JA) comes in many forms and severities range from one end of the spectrum to the other.  Just as the various 100 plus forms of JA differ, so does the treatment.  Researchers are still learning about JA; there is still so much that is unknown.  And even if one treatment plan works for one child with the very same form of JA as another, it doesn’t guarantee it will work for every child with that form.  Each child is an individual.  Thus the challenge for pediatric rheumatologists is great.

I know that families who read our blog, especially whose child is newly diagnosed, may worry even more after reading about Parker.  But I want to reassure families to remember that just because something doesn’t work (or does work) for our child, doesn’t mean the same will happen if the treatment is used for their child.  I have heard that some families get really scared after reading about Parker.  We never intended to scare anyone, but we do ALL desperately need a cure for our children no matter where we are at in this JA journey.  Parker does have a severe and progressive form of JA called systemic on-set juvenile arthritis (also known as still’s disease).  Recently, we have learned that even with systemic on-set there are some who have less than 5 joints involved (oligo) and some who have more than 5 joints involved (poly) and that it’s children who are poly in nature that seem to have a more progressive form of the disease and that children with systemic on-set seem to have more immunology issues. For readers who are not familiar with systemic on-set JA, these children not only have joint involvement but also can have issues with rashes, fevers, and inflammation in any organ in the entire body   (source:  

Our family has chosen to be vocal about our experiences because we feel it is one way we can raise awareness and advocate for what is needed for ALL CHILDREN with autoimmune diseases.  They ALL deserve equal attention and we really feel that if researchers could figure out one autoimmune disease, it would help with making progress on all autoimmune diseases.

Michael, Logan, Parker, and Jesse (Logan's best bud) watch the sunset

So tonight the rain clouds drifted away as we watch the sunset on another glorious day.  We send out love to all families dealing with Juvenile Arthritis in any size, shape, or form.  May we all see a CURE become reality for our future children!