Thankful Reflections of Our Continual HOPE

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

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

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

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

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

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

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

We Spent WORLD Arthritis Day at the Hospital

We had our visit today with the doc and we are still here at Shands Hospital since it’s IVIG infusion day/night.  The good news is it’s just an overnight stay.  Parker’s doc is amazing and we are so fortunate to have her helping our kiddo.  She talked with the principal investigator physician for the RAPPORT study and bought us some time.  She got an additional 4 weeks’ worth of med.  I thought I was losing my mind a bit because I could have sworn we had until the end of December with drug.  I really thought that was what we signed up for…come to find out…YES, that is what we signed up for but because they are running out of money to run the study, we were going to be cut after the trial run was complete.  It really seems unfair on so many levels…but we are thankful for the additional time.  His doc is so very upset by this…she felt that he should get it because so many biologics have failed him but she can only do what she can do and we are frustrated right alongside of her.

In the meantime, an appeal was filed.  We are also going to appeal as parents too.  And his doc is going to call the drug company to see what can be done.  She is also contacting one of her connections at the National Institute of Health (NIH) to see if Parker could be seen up there.  We are feeling a bit desperate.  We do not want to see this disease attack his organs again.

We also talked about trying to decrease his steroids to see what happens.  We have a sense that the steroids might be holding some of the symptoms back.  So we will test that while he is still on the rilonacept.

Also, since Parker is going to need IVIG on an ongoing basis, his doc is going to try and set up home infusion…she said it kind-of works like an insulin pump.  He would get it once a week and it would run for 1.5 hours and infuses in the stomach.  There are a few advantages to this:  we would get to be home; and he would get more continuous levels of IVIG.  For those of you who are not aware, IVIG is an infusion of around 2,000 donors’ blood plasma.  This helps his immune system that is definitely not working correctly.  So we will see about that too.

If Parker cannot continue on the rilonacept and cannot get into NIH, then the only choice left is to go “backwards” and put him on what he has been on before and probably multiple biologics.   As for the symptoms that have returned…we will continue to monitor his temp, Raynaud’s, systemic rashes, and his vasculitis.  She said he has “hot spots” with his vasculitis.  And if by some miracle, he gets to continue on rilonacept long term he may still need to alternate it with another biologic because this darn disease seems to be outsmarting the drugs yet AGAIN!  Yes, it is crazy and we so want to see Parker comforted and feeling better.

Parker was super scared today and totally freaked when they told him he was going to have to share a room tonight with another patient (sweet kiddo by the way).  And even through all his fear, Parker was also super sweet…he asked the doc to come back so he could give her a hug.  He gave her a long hug and he cried.  He loves her so much and he knows that she is really trying hard to help him.  So please continue your prayers and encouragement.  We appreciate the support more than we could ever ever express.

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

Fear can seem to momentarily paralyze us…Michael and I feel like we have been hit hard in our gut and the wind has been knocked out of us.  The last few weeks have been tough to digest.  Parker has seen progress on the RAPPORT study and for that we are incredibly thankful.  However, he is not doing as well as the other children on the study and we have seen the return of some classic systemic JA symptoms.  But today, it was made official… we cannot get the drug approved for continued use after the study and next Friday is his LAST day of the study. 

I broke the news to Parker and he totally withdrew and told me to leave him alone.  So I honored his request…as hard as it was, because this was not his typical reaction to bad news…  About 40 minutes later, one of his hospital homebound teleclasses started and when the teacher asked him how he was doing (like she does with each student during role call), he could barely squeak out “not too good”.  She said he could just listen today.  He said “ok”, muted his mic, and burst into tears.  All I could do was hug him…

Even before he voiced his thoughts, I knew what he was thinking.  He is scared of regressing even more.  He is scared he will have to go back to multiple biologics.  He is scared it will attack his lungs or heart again and he will be hospitalized.  He is scared he will be back on 2 infusions a day of kineret.  The day that we had his Arthritis Foundation Walk (May 5) was quite the celebration because that was the last night of his kineret infusion.  That night we made about a 10 minute video in case other families wanted to see what our twice a day routine entailed.  

He has been through so much such then….

During our last visit to the ped rheumy, we also had confirmation that he does have hypogammaglobulinemia and it is NOT due to his use of biologics but his messed up immune system and we were told he would probably need IVIG infusions for the rest of his life.  She also shared that she really feels he also has psoriatic arthritis in conjunction with is systemic on-set JA and all the other overlapping stuff.  And although he has been back on IVIG, his numbers are not increasing like she would like them to.   It is incredibly frustrating and concerning.

We are processing a lot right now.  Michael is coming with me on his next overnight infusion of IVIG this week, so we can talk about next steps and try to make quick decisions.  We are trusting all will be ok and trying not to let fear take hold of us.

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!

A Week in the Hospital and Parker is Finally Feeling a Bit Better

Well, we just might be over the hump...today is definitely better than yesterday.  Yesterday, Parker was in so much pain that he couldn't even stand without intense pain.  And he was having sweats so bad he soked his sheet.  Unfortunately, yesterday was also that final day of toradol; so he ended up getting additional morphine.  My heart was breaking for my sweet kiddo...

Systemic on-set juvenile arthritis is one mean vicious disease.  Parker's joints (feet, ankles, wrists, hands, knees, shoulders, neck, ribs, hips)  were sizzling hot yesterday and the vasculitis in his feet and ankles was pretty horrible.  The pictures below don't capture the thickness of the vessel swelling with justice and the red and purple shades of his skin were pretty intense, but they will give you a bit of a sense of what this horrible disease "looks" like.

 
 

His pericardial effusion is looking better and he does not have h-pylori.  All good news.  More labs were drawn today.  He is staying until tomorrow with hopes of being discharged.

We are thankful for the friends and family who have checked in with us and who are thinking of our son and saying prayers.  We have been taking it one day at a time.  Tomorrow will be his third shot of rilonacept so we are hoping for a bit more progress with each new sunrise.

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.

Living While …..Waiting….Always Waiting

This school year has been one of much optimism, but our optimism has been shaped into “realism”.  We have pushed hard to keep Parker IN his middle school because with every new drug (and there have been many) we held on to hope that “any day now, things will get better”… and in moments of time, some things get better, as if to tease us of the possibilities.  Parker becomes so hopeful, rejuvenated, and motivated with every glimmer of hope for better days.  And let’s be totally honest, when it then doesn’t work, the entire family is deflated once again.  It is very difficult to explain this phenomena that keeps happening over and over. 

When we started this journey over 4 years ago, we just wanted an “answer” because we really felt that an answer would lead us to solutions.  And we felt like we would be better able to not only support Parker’s medical needs but also his educational needs.  Well, for 2.5 years we have known what Parker “has”…We STILL don’t know how to best support his educational needs and I feel like so much rides on the RAPPORT study that he is current on.

This disease is so complex.  It’s difficult to comprehend what could happen, while at the same time pushing to maintain optimism, motivation, and faith that it will get better.  We don’t make “promises” anymore around drugs…we don’t make plans without a back-up plan and we write in pencil on our calendar…we don’t expect huge gains….BUT we do continue to hope the cure will come; we do continue to make plans and hope we can follow through and that others will understand when we can’t; and we do push for tiny gains and celebrate successes because the small bits of progress are huge for Parker!

Parker has a huge powerful energy about him.  We really believe that his strength is unimaginable for some to even begin to comprehend.  And he is a great illusionist… he is engaging and smart and puts forth so much love …and he fools people in thinking he is ok “when he looks so good”.  And we are extremely proud of him because he does rise; he does push on; and yet he has had to learn to accept that his body does not cooperate with what he would like it to do…at least not yet…

I say all this because we want people to learn and to really understand…but I am beginning to believe that it is impossible to totally understand systemic on-set juvenile arthritis…shoot…doctors are still trying to “understand” it.  Here is what we do understand…without proper treatment, systemic JA:

·         causes incredible relentless fatigue

·         produces intense pain

·         causes oligo or polyarticular arthritis:  joint swelling is in every joint for our son with heat and redness (Parker has poly)

·         induces fevers

·         brings on rashes

·         causes pleurisy (swelling of the lung lining)

·         irritates the lining of the stomach and causes gastritis (swelling of the stomach lining)

·         causes pericardial effusion (swelling of the heart lining)

·         enlarges the lymph nodes (we learned there are even lymph nodes near the stomach)

·         causes erosion and joint narrowing

·         results in osteopenia

·         causes anemia

·         causes immune issues

·         stunts growth

·         causes thrombocytosis (increased blood platelets)

·         causes hyogammaglobulinaemia (decrease amount of immunoglobulins in the blood and can cause higher susceptibility to getting infections)

·         causes fibrinogen levels to be off (this can affect coagulation of blood)

How do we know this?  Because we have to know this… Parker has experienced all of this and more…because he also has overlap syndrome of:

·         vasculitis

·         raynaud’s (cold hands and feet that turn purple, red, and white)

·         myositis (weak muscles)

·         psoriatic features

We also know that sJA can cause issues with pretty much any organ in the entire body and many have issues with an enlarged spleen (our son does not have this…wahoo).  And in two thirds of the deaths that happen in children with JIA, they are with children who have systemic JIA (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html)

Parker is living…living and fighting this damn disease that is trying to over-take him, but he is fighting hard to stop it.  Parker’s voice was heard when he said he wanted to do the RAPPORT study.  At first, my husband and I were not going to do it because we had some issues with our insurance, but after Parker’s last hospital stay, he is the one who re-initiated the discussion around the study.  At this point, Parker was on 3 biologics (actemra, Enbrel, with a dose of remicade), along with IVIG infusions.  Not to mention the multitude of other drugs to control this disease (pain meds, anti-inflammatory meds, meds for meds, chemo, steroids, blah blah blah).  And the steroids are possibly his saving grace right now…because the “study drug” is not working (or he is on placebo).  One of our main goals has been to get him off steroids…he has been on them for 2.5 years…way longer than we ever expected. 

So with regards to school, Parker has been in hospital homebound because he barely made it to school first semester.  Oh, and first semester he was only on a part time school status with 2 classes on-line.  It took him all school year to complete the first semester of both of those on-line classes and he only has one test and his exam left.  As of today, he completed all of his hospital homebound exams and he is officially done with second semester of 7^th grade.  All year, he has been playing major catch up with school.  We feel like next school year totally rides on this study and if it works.  Needless to say, we have re-initiated hospital homebound for next year just in case.  Like I said, we are becoming “realists”...yes, me, who fought to keep him in school is realizing…but we must concentrate on helping him feel better because we don’t even want to think of what “could happen”…

So we are living…coping….comforting Parker…and constantly praying…and here we are again, waiting…waiting for 5 weeks to pass since stopping biologics and being ensured he will get the study drug…in two more days we know for certain Parker will get the real trial drug.  We are unsure if he has been getting placebo, or as Parker says “if this is the real drug, it sucks”.   Need I say more…

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!