We Need Our Friends and Family

Dear Friends and Family~

We have had an incredibly hard several weeks…Parker seems to be struggling again.  The good news is that he does not have interstitial lung disease.  This is pretty huge.  The team of docs and us were pretty concerned about this because it is irreversible.  We embrace and celebrate this amazing news.

We also found out last week that Parker now has osteoporosis.  This is not only due to his disease activity but also because of the treatment.  As parents we make very difficult choices and sometimes the side effects are the lesser of the evils that we face.  His doc has already begun treating the osteoporosis with a once-a-year infusion of Reclast.  This would explain why Parker has had some difficulty with the wrist and thumb he broke more than a year again. 

Parker is still having lung obstruction and restriction.  Last week he was fitted for a c-pap mask to prepare for his overnight sleep study.  There is some concern that he may be having difficulty breathing at night.  This would certainly explain why he has been sleeping more than he is awake.  The overnight study is scheduled for April but we are also on the wait list for cancellations.

Parker’s vision seems to be shifting and becoming blurred.  We have an appointment with his ophthalmologist to check this too.

So as you can see, we have some new hurtles to overcome.  This week we have just been trying to keep him out of the hospital.  His symptoms have spiked…rashes, fevers, swelling, extreme fatigue, muscle weakness, and way intense pain.  He has missed the entire week of his hospital homebound classes, had to be excused from FCAT testing, and hasn’t even played Xbox or texted his friends.  His doc suggested we admit him on Friday but he really didn’t want to go.  Who could blame him…so we decided to see how this weekend goes since he was getting his treatment of the Rilonacept shot and his infusion of Hizentra.  Well, the good news is he got on the Xbox with dad for a bit last night.  And even though it totally wiped him out again, he had a good time.  He needed to have some FUN!

He woke up briefly this morn to take meds and to tell me to pack just in case.  Yes, he feels like we are going to have to go up to the hospital.

I really wanted to update everyone before we might have to make this trip up there but also to share why we fight so hard against this disease and are constantly trying to raise funds and awareness.  There is a saying that many of us who deal with chronic illness use….”don’t let the disease define you”…  We try desperately not to do this, but this disease has RE-defined who our son is in some ways…but it has also enhanced the goodness and kindness in him.  That is one of the major gifts that come from great struggles.  The issue is we cannot “escape” this disease….there are constant “reminders” of its existence in our life.  Every single week we have some sort of medical appointment or therapy.  Daily, there are meds, injections, infusions, etc.  And let’s face it, things are not the same in our family…some people have drifted out of our lives (we just can’t keep up with them…) and others have drifted into our lives.

We choose to celebrate the good that has come from this disease.  We have people in our lives that are “with us” because they truly LOVE us!  This is the most amazing gift and powers us forward.  Our children share that love through their actions and for that we are incredibly proud.

So we humbly but shamelessly ask for your continued support.  We need people like you in our lives.  We need people to continue raising awareness so our children have a voice and to raise funds to support research for a cure.  But I also want to share that funds are not only used for research…they are also used for other amazing things that without support wouldn’t be possible.  Here is where your dollars go:

Dancing at Camp

Camp Boggy Creek- “A Serious Fun Camp” that hosts JA Family weekends and summer camp for our children.  This camp gives us an opportunity to meet others whose lives are touched by JA but more importantly, it gives are children the opportunity for safe, medically supported fun.  Kids just being kids.  Click here to read more about Camp Boggy Creek
 

Connect events – the Arthritis Foundation (AF) hosts opportunities for individuals and families to learn and connect.  Click here to read more about Florida AF Happenings

Our Children Together

JA Family Fun Days – A group of JA families have initiated hosting events around the state each month to give families the opportunity to network and meet each other.  The AF helps with announcements and some of the food costs.

Florida’s JA Families Arthritis Foundation Facebook Page – a place to announce activities and connect with others.  Click here to connect to the Fl JA Families AF Facebook Page

Connecting at Conference

The National Juvenile Arthritis Conference – every year our state helps fund families’ travel and registration costs to attend this conference where the entire family learns more about JA, research, advocacy, and networking.  Many medical professionals volunteer their time to come and present and to talk with families about JA.  Children have their own classes and fun while adults are in their sessions.  Click here to read more about the JA Conference


Dads



JA Advocacy Summits – The AF sends families to both Tallahassee and Washington, D.C. to advocate and raise awareness.  Click here for more info on the JA Summit

The kids with JA directly impact our hearts, but there are also many adults with autoimmune issues/rheumatoid arthritis and I am one of them.

These are just some of the reasons why Parker’s Purple Playas participate in the annual AF Spring Walk.  So please consider supporting us.  You can join our team for free, help raise funds, and/or simply make a donation.  Here is the direct link to Parker’s page:  http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=954C041C14F748CE90489BEEC614B979&supId=345360575

We continually thank you for your support and send each of you much love.

Mom and Dad Powering on to Find a CURE

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"...it 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…

LOVE Powers Our HOPE

Wow!  What a week we have had… I have been pondering over how to write our “thank you” all week in the midst of all of our happenings…As many of you know, Parker was accepted into and started the RAPPORT study which is an National Institute of Health study on the drug Rilonocept and its effects on systemic on-set juvenile arthritis.    So between work, labs, and a trip to Shands Hospital, I am finally sitting down to write about our Arthritis Foundation Walk and the thankfulness that overflows in our hearts…

Well, here it goes…  People walk in and out of our lives each and every day, it just naturally happens.  Taking the time to build lasting relationships with people has blessed our lives immensely.  And it’s moments like we have experienced when you realize how interconnected we all are… On May 5^th, we had the pleasure of sharing in one of the most remarkable experiences with many many people who will forever be IN our lives and dear to our hearts.  May 5^th, Parker was showered with love that totally wrapped around our family in a way that words cannot quite explain.  As we pulled into the parking lot, we gasped at the sea of purple starting to wash over the park.  We knew a lot of friends and family were joining us, but it’s overwhelmingly powerful to actually “see” it.  In addition to our team, there were many people out supporting various other teams…definitely more than last year.  All I kept thinking is how much love was in that park for one single cause!  Everyone’s lives were touched by the many forms of arthritis.

We are so very thankful to all the people all across the nation who wore their purple for our sweet boy, Parker.  And we are incredibly thankful to the over 130 people who came out to walk with Parker’s Purple Playas.  There were friends from my work, University of South Florida, and Michael’s work, Southern Wine and Spirits, who not only generously donated but also came to walk with their families and friends.  And did you know that Southern Wine donated each and every one of the 202 shirts that were made with the drawing of Parker’s Purple Playa on the front saying “I’m not fat; I ‘m puffy!”  It was so wonderful to have all our family and friends join us and even many strangers who quickly joined our circle of friends.  We had several early childhood colleagues/friends from multiple agencies and preschools who walked and some even hosted fund raisers to donate to the cause.  Girl Scout Troup 65 and Boy Scout Troup 212 joined with their families and also worked together to raise funds.  My aunt and uncle came out to pop kettle corn and donated all their proceeds to the Arthritis Foundation.   And a very special thanks to Joseph who went to all the staff from Parker’s middle school and shamelessly collected donations for his friend Parker.  We even had some staff and kids from TCMS’s Junior K Club join us.  Team mates also asked their friends and family to donate and walk.  We had complete strangers opening up their hearts to us.  Children from Westchase Aftercare gave up their coins to donate; and a very special little 4 year old Purple Playa, Kailyn, collected her precious “pennies for Parker”.  We had donations from all over the nation…from colleagues, friends, family, and complete strangers…all touched by one sweet boy, our boy.  We love him dearly.  If you haven’t met him yet, here is a short video that he made to explain what it is like to live with systemic on-set juvenile arthritis…I am sure if you watch, you will see how people fall in love with him too.  Parker's YouTube Video Link

As Parker was getting his team ready for our walk team picture that morning, I was in the bathroom helping the Tampa Bay Ray’s mascot, Raymond, get over to the team.  When I walked around the corner holding Raymond’s hand and looked out at Parker’s Purple Playas positioned for the snapshot, I could see Logan at the very tippy top of the mountain-like jungle gym.  Logan, Parker’s older brother, right at the top of it all.  I was totally overwhelmed at the site.  Logan has endured all of this right alongside of his brother and in that moment I was so very proud of the young man he has become.  He has strength, compassion, brilliance (the kind that shines), and he so deserved to be “on top”.  At first he was all I noticed…and as we got closer and closer the white nose I was hearing turned into cheers.  My breath escaped me…and my eyes glassed over with the tears that were trying to flow.  We were all there…in the moment… together!  For one cause!  With HOPE in our hearts! 

Parker grabbed his bull-horn that Logan had covered in duct tape…purple duct tape, of course.  He cheered his team on while we snapped pictures…  We love each and every one of the Purple Playas.  So much of the morning felt like a blur…  As we all began the actual walk, I kept thinking how incredible it was to share in this moment…all of us…walking together.  As we rounded the second corner I felt compelled to thank everyone…We were at the front of the walk, so I turned around and started to walk against the flow of traffic.  That was pretty funny because my husband also had the same idea (we had separated somehow but met back up as we walked against the crowd).  We knew the only way we could try and say thank you to everyone was to walk all the way to the end…so we did.  If you are reading this and we missed you somehow, please know that we are eternally thankful.

When we finished walking, the crowd dispersed somewhat to play games, enjoy the playground, and to check out the vendors.  And then a marvelous surprise arrived.  Parker has always adored one of the Rays baseball players…and guess what…his hero, Ben Zobrist, came to see his buddy Parker and he brought his beautiful family with him.  They were so gracious with their time and posed for the many pictures and chatted with the small crowd that gathered.  And when the crowd dispersed, I was deeply touched that they just hung out and played with their dear children.  Julianna Zobrist was so delightful and the fact that they took time out of their precious family time to join our family in this event was so special.

What touched me the most though, was that my father, mother, sisters, nieces, nephews, and aunts and uncles and my dear sweet grandmother all came out to join the walk.  I kept looking over at how beautiful my grandmother looked sitting under a huge oak tree with a smile full of love on her face and I couldn’t help but to think of my grandpa who passed the same day that Ben Zobrist walked into our lives when Parker got his Make-A-Wish…and there was one person who made so much of this come together for both of these events…Jen Funk.  She works with the Rays, often behind the scenes...and she is an amazingly giving and caring individual.  Thank you Jen! 

When Parker and I were saying prayers that night, Parker said to me “Mom there were a lot of people out there today for me.  It feels good to be surrounded by so much love.”  My thoughts keep going back to my grandpa… who would have thought that the Parker’s Purple Playas are “the most to say the least” and that all we need is “a smile and a few kind words” and that he would have thought that this event was totally “top drawer!”  I am sure he is up in heaven right now with Grandpa Tony, Memere and Pepere thinking how very blessed we are to be surrounded by love!

If you would like to see pictures from the walk please visit these 2 links (and there will be more…my uncle is still editing some) : 

Photographs by Denise Veselka

Photographs by Jane Winstead

Love from our family to all of Parker’s Purple Playas…Together we raised over $15,500.  Join us again, same time, same place, next year!

P.S.   And Happy Birthday Grandma Dianne.  We know you couldn’t walk with us, but hopefully you could share in the experience by reading this.  We love you very much!

Open minds and open hearts bring openings for possibilities!

I want it all to go away today…no more JA!  My heart breaks for my son.  It seems that no matter how hard we try to insert normalcy or fun moments into our lives the price Parker pays scares me. 

We want him to walk.  We want him to be active.  We want him to play.  As he should...  But there is such a fine line between the joy it brings and the misery that follows. 

Don’t get me wrong please…we are happy about so much (as you can read in the previous post), but this yo-yo life is so difficult to witness.  Only Parker LIVES it…we need to continue to raise awareness.  These children need a voice that is loud and proud!

We know that people don’t want to hear about depressing things.  We know that people don’t desire to experience heart ache.  We know that life is going on all around us and there is much beauty in life.  We actually feel that our hardships have taught us to appreciate life’s beauty all the more because when simplicity and good health is no longer…you cherish the moments of joy.  They are truly blessed moments…

But I want ALL to know, to listen, to understand the depth of what our family (and many other families) are dealing with in the privacy of their own homes.  This last week was extremely hard for Parker…again…As many of you know, he is now in hospital homebound.  This week was FCAT week.  He could barely get through the three mornings of testing, not because the content was too hard, but the mere fact that he had to “do it”.  He not only completed the testing in intense pain, but also through his incredible fatigue.  He fell asleep during testing, but also on the ride home, and again once we got home.  (Yes, we know that he can be tested at home…but they thought he could handle it at the test site and we wanted to try.  Parker wanted to try.) 

Parker barely did anything Friday or Saturday following FCAT.  But when he asked if a friend could spend the night Saturday we jumped on it and he did.  He had so much fun with his friend playing video games and chatting.  And hopefully we didn’t scare him too much with the infusions he witnessed. 

Parker then rested all Sunday morning to prepare for our Sunday afternoon fundraising event.  He insisted on going.  He took extra morphine, slept all the way there and he was a complete hit!  I really don’t know how he revved up the energy to be engaging and gracious with everyone who came out to support HIM; but he did it with a smile.  And he has been crashing ever since.  HARD.

When he was getting ready for bed he said to me that it didn’t matter how much money he raised today because he taught some strangers about juvenile arthritis and one of them was an old dude and his old dude friend.  I just love this kid.  He just wants people to KNOW that kids get this and it is an AUTOIMMUNE disease…it is not osteoarthritis!  He is so very strong. 

This disease is devious and deceiving…Parker can look fine on the outside, his spirits can even be high and then in the split of an instance things can change…and we never know when it’s going to hit.  This year we have learned a lot about this disease…one thing that we have learned that I didn’t want to learn is that few children with systemic juvenile ever go into un-medicated remission.  We have also seen children pass away from this form of JA.  That thought totally takes my breath away.  It makes me pause and truly appreciate every single God given moment we have on this planet together.  But the gifts we have are endless…we have seen when people open their minds (to accept this disease for what it really is), with open hearts (to show the love), then opportunities open up to endless possibilities…

I end with “William’s Wish”...as we prepare for our own local Arthritis Foundation’s walk.  William’s family is forever in my prayers and heart.  Rest in loving peace sweet dear William.  Please click on the link below…

William's Wish broadcast

Much love to each of you and may your heart and mind always be open!

Almost 1 Year!

I know this is a long entry, but I have totally been avoiding blogging.  I am having such a hard time emotionally…for about a week now.  Parker has been very sick.  He has h-pylori and is now on 3 additional medications to treat it.  Parker is allergic to five antibiotics to so we are on pins and needles hoping he doesn’t react.  We just need to get him through this next week.  His past reactions have mostly occurred around day 7-10 of taking the med.  So far, so good…no reaction.  Tomorrow is day seven.

Once again, he is missing school.  The h-pylori is a stomach bacteria and it has put him in tons of stomach pain, horrible bowels (won’t go into the details), decreased appetite, and it is totally flaring his JA.  His pain is intense and he is very very fatigued.  Last Friday he seemed to be turning the corner and so we had one of his little friends over who has JA on Saturday.  She is 6 and she is into frogs and so we gave her Parker’s old frog tank.  The two of them had a pretty fun day and went swimming, cause we thought it would be “good for him”…not so much.  He got so much worse that night and next day.

So let me just share a little tid bit about pain…it is not something to take lightly.  He is trying so hard to not let the pain get the best of him but it’s turning him into Mr. Grouch.  I know he doesn’t mean to be mean.  Not only does the pain make him edgy but he is also on massive steroids and they are contributing to this horrible mood…we are trying to be patient but at the same time using it as an opportunity to teach him how to calm and breathe through it.  The pain is so bad; he is waking up totally drenched, with a temp in the 95’s.  I do think that it is worsened by the infection he is fighting; so I keep saying “this too shall pass”…

But my emotions are a mess…I just realized that we are approaching ONE YEAR since his diagnosis…We have learned a lot, have met some wonderful people, and we have actually seen some progress since he started the actemra.  So for these things I am very thankful; yet I find that I am fighting back tears…

When Parker was diagnosed we were told over and over, “at least it’s not cancer”…And people still say this, so I need to talk about this a moment.  Many of the families I have spoken with have had “cancer scares” and have gone through multiple tests to “rule it out”…including us with Parker.  And yes, I am very thankful it’s not cancer…but it is said to parents as if having JA is better than having cancer (I know they don’t realize what they are saying).  But JA should not be considered acceptable or better.  It deserves recognition.  It is a vicious, horrible, painful, and life altering disease.  And it can even be life threatening, as in Parker’s case.  And the medications that are given to children with JA warn that they can increase the chances of cancer and yet we choose them…because there are no other choices.  Parents hope for “good days” and remission.  We use these meds because our hope is to stop the progression and give our children a quality of life.  We need a cure!

We deal with very real issues.  I watched my son run a few weeks ago because he won a raffle at the arthritis walk and he ran up to get it.  It’s the first time I have seen him run in a long time.  I was excited and then I looked over at my husband and we both realized his balance was totally off and he was waddle running.  This was a moment of excitement and fear all in the same moment, for both of us.    Then there are the days he sleeps and sleeps, like this last week.  When this happens, I find myself checking to see if he is still breathing.  But the worst is in moments like tonight…he asked me if he was dying….

One of the receptionists at the hospital, who checks in all the children as they come in for their infusions, got into a conversation with me recently.  She has seen us come in to see both the rheumatologist and the oncologist because the docs share clinical space and the infusion room.  She shared that she sees so many children but she watches the children with RA experience so much pain and that is really hard for her to watch because they come for treatment until they are adults and age out of the pediatric care.  And she sees them at their worst.  And yet these children try to smile…

Don’t get me wrong, there are moments that children with JA have fun and run and do what other kids do…that’s what the public sees and it confuses them.  But when kids with JA are in a flare, they are NOT seen.  They are home, at doctors, in labs, in therapy clinics, getting tests in radiology, in infusion rooms, in the hospital….  Thus they are not heard…They need a voice.  Be their VOICE. 

It is Arthritis Awareness Month.  I cannot believe that the anniversary of my son’s diagnosis is in the same month as JA awareness month.  I need your help.  My family needs your help.  My son, Parker, needs your help.  Tell others about Juvenile Arthritis.  Send them to this blog…help others learn that YES kids do get arthritis and it’s very different than grandma’s arthritis…it’s very real and involves real children with real families with real hopes and dreams for the future and a cure.