Just a Bit of How Things Are…

I know we have been quite … Parker has not been feeling well at all.  As a mom, it is incredibly hard to watch your child struggle day after day.  I keep thinking, tomorrow will be better…we are going on two really rough weeks with loads of inflammation and some adrenal issues.  His adrenal insufficiency can be pretty scary and every time this starts up, I feel my heart squeeze so tight it hurts.  We came so close to losing him with one of his adrenal crisis episodes and I tell myself we are better equipped with both knowledge and meds now, but I still get scared. 

Parker is now taking a stress dose for his adrenal insufficiency because he might also be fighting a virus.  And he is also taking meds for his pain and inflammation.  During these last 2 weeks, he has barely been out of bed.  The balance of helping him move so he doesn’t hurt more from being stiff, and the balance of not moving too much that it makes things worse, is quite delicate.  And I admit, I am not sure if we will ever master that.

It’s been hard for me to write blogs lately…I have wanted to allow Parker to tell his own story.  But when Kristen was here for her extended stay, she and Parker told me that a mom’s perspective is also valuable and they encouraged me to blog more.  The thing is, it makes everything so “real”…and I keep thinking and praying that Parker will get better…in some ways he has but in other ways, well… It is just our reality. 

So I cry in private on the really hard days; and I try as hard as I can to be “normal”…going to work, helping others, being as social as I can, and sometimes just being quiet and to myself.  On the “good days”…I just want to do everything we can fit in because I want so badly for Parker to experience JOY.  Of course, there seems to always be a price to pay for joyful interludes. 

Having a child with chronic illness can be quite lonely…because it is chronic, conversations are hard.  Parties are harder… I don’t know if other moms have these moments too…where you stand in the middle of a room full of people in a buzz, usually for a joyful gathering and you feel totally alone.  It is the weirdest thing ever.  I don’t know how to begin conversations anymore.  And I don’t think people know how to converse with me.  And sometimes, I avoid … because it is easier, less exhausting.  It’s like I am holding onto my reserves.  Just this week, someone asked about Parker and when I started explaining his surgery it turned into “oh, I have arthritis too”….and I got to hear all about how this older woman had it so hard.   Then, I felt horrible because I think she has no idea how her comments hurt …but that is just it, so many have no idea.

And let me tell you…all you moms with young ones with severe chronic JA…well, when 18 hits…watch out.  My world is a bit upside down.  18 makes you reassess, plan for the future that you were certainly not prepared for, and oh the paperwork…  I know not all kids are as severe as Parker, but whoa…this 18 years old stuff is something:  Do we do permanent disability?  Then there is Medicaid (or will there be…)?  Will he live on his own; or should we get a home with a separate apartment or mother-in-law suite? How long should I work?  Will he work?  Will I run out of sick leave?  Will we ever take non-arthritis related trips/vacations?  Do we remove his port and put a new one in or not?

And then I remind myself…I can only do what I can do in a day.  So, we do what is needed in the here and now:  Like buying two pairs of shoes, because one foot needs a nine and the other needs an 11 due to the ankle/foot orthotic…Or bringing the puppy up on the bed for some Parker cuddle time and a joyful moment…And making a yummy snack of yogurt, granola, and berries because Parker will eat that.  So I admit, these last 2 weeks have been really hard and we could really use some better days in the near future.

Please Heal My Child…

I sit, praying, hoping, loving, watching…How can this disease steel so much from my child.  I find myself looking for signs of improvement…only to find that he still has signs throughout his skin and his actions.  Parker is currently in adrenal failure…barely traces of cortisol in his blood.  I watch him sleep, for his stomach to rise up and down as the bi-pap machine pressing air in and out of his lungs.  Sometimes the movement is so subtle that I feel I have to lay my hand on him…just to check, as I hold my own breath until I feel the soft rise and fall.

I look at his hand and feet…full of swelling with a mixture of red, purple, blue, grey, and white.  His vessels thick and at the surface, as if they will bust out of his skin.  Tiny bruises trickle across his neck and shoulder.  His face…beat red in one moment and pale grey in the next. 

He doesn’t really want to talk…he just wants to be left alone…to sleep and distract himself with videos.  As his Hizentra infusion flows in him, I pray that it boosts him enough to heal.
Lily (our dog) is right by his side…she knows….dogs always know.

Why does this disease try to overcome our child…he is incredibly strong, completely determined to ride through this…always hoping that JA will stop hurting. 

Today he is really dizzy.  He is still having sweats and chills.  

The emotion is in the silence… with love in my heart, please heal my child.

 

HOME with Happiness in Our Hearts

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

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

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

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

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

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

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

From the Voices of CHILDREN with Juvenile Arthritis

Families with children who are journeying with Juvenile Arthritis are some of the strongest people we know.  Many of these amazing families shared with us what their children have to say about JA and gave us permission to post their words on our blog.  Thank you to each and every one of you for opening your heart so others may better understand what you go through.  Names have been removed to protect privacy. 

These children’s voices speak volumes…

·         Some days you ache really bad and some days you feel great.
·         Some kids have really bad arthritis all the time and we need to help them.
·         When you have arthritis, you get to go to a bunch of events that are only for kids who have it. You also get to meet a bunch of different doctors and nurses who are really nice. You can make different friends than you would make if you didn't have arthritis.
·         I like to go to the children's hospital, because I can have sushi for lunch.
·         I want more people to know that a lot of kids get it and it's not JUST arthritis. It is more serious than people think. Not that most people realize that kids get it.
·         The BEST thing about JIA is Camp Boggy Creek.
·         I really wish people could understand the amount of pain some kids suffer.
·         People seem to think that because we are children that our pain isn't as bad as it is.
·         The best part about JA is my JA Friends; they are like brothers and sisters who really "get" me.
·         It hurts and I feel yucky.
·         I gets a lollipop after my needle bag (infusion) and Santa comes to the hospital because I is special.
·         It is cool to go to Camp Boggy.
·         I want others to know that just because we have this disease, it doesn't make us WHO we are, it's just a part of us and something we deal with every day. Don't look at us differently or treat us differently because of this. We are people with our own personalities and we are fighters. We are in pain every day and we still get up, put a smile on our face and go and do things that "normal" kids do.
·         We can laugh, joke and have fun just like the rest of you so don't ignore us or make fun of us because you think we are different. Talk to us and be our friend and you might find that you just found the best friend you'll ever have...
·         And the Best thing about it.... As we get older and start accepting that we have this disease and gain a little more confidence, we find that we can do things we never thought possible, we meet people with the same disease or something similar and find that we aren't alone and eventually realize there is a purpose for us and when we find that purpose, you feel really good about yourself whether it is helping people, raising awareness or just making someone smile because you are smiling despite the pain and agony you are feeling.
·         I love going to her eye Dr. because I like to read the letters.
·         I hate shots; it’s the worst.
·         We talk about all the other kids who have arthritis and pray that they all feel better!!!
·         I miss school.
·         Sports hurt now.
·         JA kids are compassionate, sweet and caring!
·         Even though there is a smile on my face, I'm in a lot of pain.
·         It's hard when I can't keep up with my friends.
·         The best things about JA are new friends who also have JA at Camp Boggy.
·         You get to skip PE.
·         People shouldn't just think you can't do anything just because sometimes you are in pain, 'cause sometimes you are not.
·         You can go to fun places like Boggy Creek and if you are in your wheelchair you get to go to the front of the line at the parks. (Disney, Legoland, etc.)
·         I wish others knew the reality of JA and just how greatly it can impact the lives of those who battle it daily... Just getting up and out of bed can prove to be an arduous task.
·         And I think the best things about JA are derived from what we learn from coping with it... Tenacity and empathy are two of the most glorious gifts adversity can offer.
·         Arthritis took away my high jumps and fast running.
·         Shots on Thursday.
·         Cookie.  Juice. J
·         There is no magic cure, drink, or food that CURES this disease and even the medicines our doctors give us is not a cure it is a treatment.
·         The BEST thing about JA is how it has shaped and changed my life and myself. I would not be who I am today if not for my arthritis, and I like myself.
·         Arthritis is a disease that does not care what age you are... anyone from an infant to an elderly person can get this disease.
·         The best thing about having JA is going to conference and meeting other kids who also have this condition.

·         We have wonderful friends and are able to help newly diagnosed.
·         It is not just bad to your bones; it affects other organs and your heart.
·         JA can affect any age.
·         Sometimes when you have JA you can also have other autoimmune issues.
·         Kids get arthritis too!
·         I have met a lot of cool people.

 

Parker was asked, “What do you want to do when you grow up?”

 (Written by Parker Lentini)  

This essay was quite difficult to write, not because I couldn’t think of anything but because of the topic itself. This is a very sensitive topic for me because sometimes I don’t feel like I’m going to make it to my adult life. I mean sometimes I am in so much pain that I don’t know if my body can handle it anymore and no I’m not saying I’m going to take my own life. It’s just sometimes I feel like one day I’m going to wake up and not even be able to move or do anything.  So, I did my best to answer this question.  I hope you like it.

 “What do you want to do when you grow up?” …a question kids are often asked in life, but who knows what we actually want to do. I mean we still have years before deciding. For instance, I could be a firefighter, a baseball player, an actor, or even the president. But I guess if I had to choose now, I would probably say, “I want to be a Child Life Specialist.”

The main reason I would like to be a child life specialist is because they are the one person in the hospital that everybody likes. I know the first time I was admitted into the hospital I was sad and scared. Then this lady named Amy came into my room with a big smile and said, “Hi I’m Amy from child life is there any thing I can do for you.” Then my mom said to her, “He’s not doing good, sorry.” But she wanted to do anything to make me feel better; so she asked if she could come in. After we met, she asked if I wanted to play any games and from that moment on I knew I wanted to be a child life specialist. Like I said, every body likes them because they do whatever they can to make your hospital stay fun.

The other reason I would like to be a child life specialist is because of the kids. These poor kids have to spend weeks at a time in the hospital getting infusions, x-rays, MRI’s, surgeries, difficult treatments, and sometimes even missing holidays. And having had all this happen to me, I know how much a friend can help. I just love being around kids, and if I was a child life specialist I could be with them everyday. Since I have experienced what they are going through, I can relate to them and help them cope. So I would do it for the kids.

That is why I would like to be a child life specialist:  one, to be the “one liked person” in the hospital and two, to help the kids who need a friend and cheering up. You don’t have to be a firefighter or the president to help people. And you don’t have to be an actor or a baseball player to be cool. A child life specialist is all that and more. So thank you to all the child life specialists for helping others and helping me find out what I want to do when I grow up.

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 8^th 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!

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:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html).  

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!

Parker is in the Hospital...

Just a quick note to update...Parker was admitted into Shands Hospital yesterday.  We visited cardiology yesterday for an EKG and Echo-cardiogram.  He has been having that feeling again and chest has felt pressure filled and he has had difficulty breathing.  Last week his nebulizer treatments seemed to help but not so much this week.  After the echo we went and had lunch and you know the saying "no news is good news", so after hanging in Gainesville for a bit we headed home.  About half way home we got the call to come back.

Parker has mild pericardial effusion again.  The good news is that they feel that it will correct itself and we won't have to drain it.  So, for now they are trying to make him confortable and we might increase his oral steroids because of this.  But we will see.  He is already on a hefty dose.  He is also having bad stomach pain and they are also treating that.

Because he is on the RAPPORT study there are some strick rules around medication and we don't want to jepordize the study but of course if he gets any worse we will not hesitate to do what we need to do to keep him safe.  He is looking better today, which is good.  He definitely has had 2 shots of real drug (rilonocept) because at week 4 kids are guarenteed real drug.  However we are pretty certain he was getting placebo the first 4 weeks.  He is just into week 5.

I will keep you posted as we know more. Thanks all for continuing your prayers and for keeping us in your thoughts.  It means a lot.  We are hoping this is a short stay.

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!