The Gift of Life, Love, and Purpose

Every single day is a gift!  In the spirit of “Rare Disease Day” (which also happens to be my

grandpa’s birthday); we unwrap every gift before us with new wonder.  

A very cold, fatigued kiddo
during walk kick-off
Walk Team Page:  Join Parker's Team (click here)

This week was way busy with much reflection; and we feel certain that we are blessed with Parker’s very wise, compassionate doctors.   And this week we had discussions with 4 of his docs.  We feel like we are on a good path and that Parker has a voice in making decisions.  Needless to say, the decisions continue to be difficult and choices no child should ever have to ever consider.  And yet, Parker does …and he weighs it all out with more wisdom than many adults.

We had our walk kick-off this week and one of Parker’s docs spoke.  Her presentation sparked many thoughts for us.  She spent some time chatting with me after the presentation and helped explain some pieces of the “Parker puzzle” that we never quite fit together.  One of Parker’s meds, methotrexate (a chemo drug), was discontinued during a hospital stay a little less than a year ago.  He was switched to prograf, a drug usually prescribed to help the body not reject organ transplants.  We haven’t heard of any other children on this drug; and we are pretty connected in the “JA world”. 

So, I inquired why this drug is being given to Parker.  She said that it was because he was in MAS at the time.  For those of you not aware of what MAS is…it is pretty much every family’s nightmare that has a child with systemic on-set juvenile arthritis.  We knew that Parker was on the verge of MAS a couple of past hospital stays but we didn't know that he was fully in it and that was why prograf was chosen…and if we were told at that time, MAS was not the word used.  However, thinking back on that hospital stay, it definitely was an intense stay and he was very sick and they did explain the reasoning behind using prograf.  And I think that the doc was probably trying to keep me calm and protect my momma heart.  I definitely was hearing white noise and felt like I was in a fog as I tried hard to focus on her words and focus on my reaction and stay calm.  This is when trust is the up-most importance, because your child is witnessing so very much alongside of you and prayers become your constant inner voice.  For those of you who don’t know what MAS is, it stands for macrophage activation syndrome.  It is severe, dangerous, and life threatening.  It is the number one cause of death in kids with systemic JA.  Here are some links about MAS:

lhttp://www.the-rheumatologist.org/details/article/2041587/Systemic_Juvenile_Idiopathic_Arthritis.html

http://www.the-rheumatologist.org/details/article/973181/Macrophage_Activation_Syndrome.html

http://emedicine.medscape.com/article/1380671-overview

In addition to our walk kick-off, Parker endured two rounds of sacral nerve ablations.  He has two more rounds next week to complete the series of 6 for the sacral area.  This last round was pretty tough on him.  He is a strong little tough warrior.  He was then going to move on to the lumbar region; but we need to stop for a period of time to deal with some endocrine issues first.

The endocrinologist called and his labs and bone-age scans showed that he needs further testing.  So, we are scheduling a day long test day at the hospital to proceed with testing for possible growth hormones.  The “good news” is because he has not yet hit puberty and his bone age is “younger” than it should be, then he could potentially get growth and puberty hormone with good results.  So we are actually hoping he “fails” the day long tests, so that he can get help.  Yes, you read that right.

At first I was upset to hear about another round of “bad labs” but after seeing the rheumatologist Thursday, she explained things in a way we could better understand and that this could really help him.  So, we are going to stay in that mindset and hope for the worst to get the BEST!

Michael and I are pretty exhausted these days.  We are just trying to keep all the balls in the air and if one drops…we hope it is one that we can just do without and let roll away.  So much that is happening is movement in the right direction, it is just constant.  And there seems to be a domino effect.  And then there are my health issues and Logan’s health issues that also need attending to; we must remind ourselves over and over that we can only do what we can do in a day.

WWW.HIGH-5-CLUB.ORG

And we also must remember those precious gifts:  Parker is off of prednisone after 4.5 years and he is off of morphine after 3.5 years (one of his narcotics).  Parker re-started an on-line virtual class yesterday; and he is determined to not look back and to continue moving forward…wherever it takes him.  He is pushing through his pain and walking more and using his wheelchair less.  He is excited about his and Sadie’s High-5-Club; and they

Sadie and Parker deliver High-5 Care Kits

delivered their first set of High-5 care kits this week and can’t wait to do more!  Our family and friends’ encouragement and love continue to lift us up and power us on.  Our lives have purpose.  We have faith in what is meant to be will be… and it gives us peace and hope for the future.

 

So Many Thoughts…

As a family, we have chosen to openly share our journey with juvenile arthritis.  This was both a difficult decision and an easy decision.  Difficult because in some ways it leaves us vulnerable and somewhat open to “judgments” and “opinions”; however, we know there is a great need for awareness and advocacy.  Many are often shocked when I tell them that I have rheumatoid arthritis because I am “too young”…you can imagine their greater shock when they find out that our children have JA.

Each family that is impacted by JA has their own story, their own coping strategies, their own experiences…but we all have one thing very much in common…we all have a child whose life is impacted by an autoimmune disease.  All of our children are “children first”…they have dreams of children…they want friends; they need their education; they long to play.  As parents we try to provide them with the best opportunities we possibly can between therapies, hospital visits, doctor appointments, procedures, infusions, etc.

Lately, I have been pondering how perceptions are shaped by our experiences.  How we perceive situations based on our “view” will either allow us to take on another’s perspective or not.  There are moments when either my husband or I have been misunderstood; and we have also witness our children being misunderstood.  For instance, during our last hospital stay one might say “Parker was not very nice or he was not coping well” and in that moment probably not.  However, what was not immediately apparent were all the circumstances surrounding that situation.  It takes great skill to look at the bigger picture and try to understand the whole situation and to understand his perspective.  And please don’t misunderstand me…we still asked him to reflect on his actions and apologize.  When others take the time to truly understand, that is when the miracles have the ability to happen.  I do believe that social-emotional support is just as important as the medical treatment.

I know we are not perfect…no one is…I know we are making some mistakes along the way…that is our opportunity to learn.  And I am sure we will continue to make mistakes just as I am sure we will continue to learn.  We are dealing with an autoimmune disease umbrella that has limited answers and much uncertainty.

We have learned many lessons through this disease and our appreciation for life is greater.  We know that simplicity is golden.  We enjoy the breeze in the air a little more.  We feel the depth of love with deeper affection.  We cherish naps full of dreams.  We cuddle just because.  We celebrate laughter often, even when it’s through a few tears.

Do I wish none of this had ever happened?  Sometimes…we have felt and witnessed great anger, sadness, and pain.  But sometimes I think, but then we would not have met some of the most amazing individuals on this planet…who just show love without having to be asked…The human spirit is quite remarkable.

We want to tell everyone thank you for joining us in this journey, for supporting us during our fundraising and walks, for listening, for celebrating with us and for cheering us on.  We advocate for our family and all the children with autoimmune diseases in hopes that a cure will come for each and every child.

We are thankful that we have a support network that is willing to walk alongside of us…even when we don’t know where we are going.  We appreciate your willingness to simply just “be” with us.  Our family pulls profound inspiration from your support and together we are stronger…

Much love from the Lentini family (A.K.A. The Purple Playas)

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

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!

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 5^th 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.

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!

Positive Purple Power by Parker

 

Logan, Mom, Dad, and Me

 

Southern Wine & Spirits Support My Dad



So last Sunday we had a fund raiser for arthritis at one of my dad's accounts, The Dirty Shame.  What we did is we were selling drinks and ALL the proceeds and even the TIPS were going to my team for the Arthritis Foundation’s walk.  At first we weren’t getting the crowd we really expected.  So what I did was sit in my wheelchair in front of the venue and asked for people to come on in and told them that it was for arthritis.  We had a couple people come in.  But we weren’t really getting any donations. So I asked for a cup that I could put money in so that people knew that they could donate even if they didn’t come in for a drink.  After a while, people started to say things like “I will come back later…” or “here’s a dollar…” and we started to get donations.

 

Mom's Friends from Work Help Out

  

Aunt Janey Took Pictures for Us



Logan Helped Get Donations



 

Aunt Sandy and Uncle John with Me

 

Aunt Sandy and Uncle John Even
Brought Friends who Also Donated

 

Then later, two old guys walked by.  I asked them if they wanted to come in because all proceeds went to kids with arthritis.  But they said they were just at a bar for the last 2 hours.  And I was kind-of sad.  But then my brother Logan said you can just donate here if you would like…you don’t have to buy a drink.  So the one dude said, “Ya, I guess I can do that.” And he gave us three bucks.  And then he started asking me questions about what it is for a kid to have arthritis and how it affects me.  So I briefly told him my story of what I have gone through.  And then his friend came over, the other dude who was also old, after I shared my story and ended up giving a dollar too.  And that made me feel like I had accomplished my goal.  If I can just tell one person a day that kids can get arthritis too, then everybody will know in no time.

Later, a lady walked by with her husband.  I told her about kids with arthritis.  And she decided to make a donation.  She gave $20 and grabbed my head and said, “God bless you.”  At the end of the day, I had ended up raising close to $400.



Mom's Early Childhood Friends



I want people to know what I go through but I don’t want people to treat me like a baby.  What I go

through is really hard and it really hurts.  But half the days I lay on the couch or in bed because I hurt so badly.  And sometimes I end up sleeping with my mom at night because I am scared I will wake up in more pain. 



Even Candy from the AF Came with
Her Husband





Aunt Regina, Victoria, and Uncle John



Anne and Chaz Brought Friends Along
We went inside when it started to rain

Sometimes I feel like the meds aren’t even worth it…they hurt my stomach sometimes and I don’t know anymore.  They need to invent meds that don’t hurt and taste good because then kids will want to take their meds.

Life is going to get better, I know it.  I know it’s hard right now but the future is bright for us.  I feel like I have helped the “arthritis community” because at least I am letting other people know about this disease.

 

I Invited People in
and also to Donate

Nice End to a Wonderful Event