Happy JA Awareness Month

 

Juvenile Arthritis Awareness month has officially begun…The years seem to loop back around quickly and I feel a little bit like a broken record; but we desperately need a cure.  We have been a little quiet lately, not knowing what the future holds, trying to make big decisions, and wishing there was really big progress around the corner.  Parker has been in, what feels like, a holding pattern.  Every month, when we refill his cosentyx (now on for nearly 6 months), they ask if symptoms are improving, getting worse, or staying the same…I say staying the same.  They say great.  And then I say but same is not great…it doesn’t seem to have helped him yet.  He is also on Rasuvo (auto inject methotrexate)…but that darn med makes his leg go numb, so we don’t know how much longer he is going to use it.  Docs, nurses, and pharmacists all say that is not one of the side effects…I beg to differ because, at least for Parker, it is. (And by the way, he tried the other auto inject of otrexup and the numbness was even worse).

I am a little more worried these days, wondering what the internal organs are doing.  He has had many issues since my last blog post.  Gastrointestinal issues (possible crohns, but meds might be masking it), Kidney stone that had to be blasted out, many flares with fevers and rashes, the never ending battle of pain, adrenal crisis twice, possible dysautonomia flares, and the need for a re-do on this right foot/ankle/tibia.  He now has surgery scheduled for August 28.  The surgeon will be fusing that foot like his left, with 3 bolts.

Through it all, Parker fights with his driven spirit and is balancing these not-so-fun medical issues with real fun.  He is part of a large campaign that will launch later this month (yes, that’s a little teaser); he was selected to be a “Leader in Training” (LIT) at Camp Boggy Creek for cancer week; and he is gearing up for his first year at the JA Conference as a “young adult”…Yes folks, he is turning 18 on August 5.  I still can’t believe my kids are now both adults.

Friends Forever

Last night Parker decided to write down his thoughts after the JA Family Fun Day and then he asked me to post it on the blog.

This morning I woke up in a ton of pain. It wasn’t a surprise because I have been hurting really bad. But today I had to push through it because it was the family beach day thing. I slept the whole way there and really didn’t want to go. When we got there I still wanted to go home. But I started hanging out with my friends and things started to get better. There was one specific friend that I really connect with. And the whole day was ok when I was hanging out with her and my other friends. The best part of the day was that I won the best-dressed contest. I also got second place in a watermelon-eating contest. I ended up doing sooooooo much and now I’m in even more pain. After the fun though I still feel terrible. But remember your friends make everything better.

Cards for a Cause!

There are really amazing big-hearted people in this world!  I have been blessed to meet one such person, Helene Graziano.  Helene heard about Parker through a friend of mine who was sharing to raise awareness about juvenile arthritis.  My friend, Denise, told Helene about Parker’s giving heart and how another mom, Dawn Veselka, and I had started a non-profit to benefit children with chronic illness like Parker and Sadie (Dawn’s daughter).

www.helenespapercrafting.com
 

Helene and her daughter

Helene was very excited to hear about this because she has a business called Helene’s Papercrafting with “Stampin’ Up”.  Their new theme is “Making the Difference”.  Well, this new theme lead her to recruit her family’s help and set up a weekend card crafting marathon to benefit our non-profit, the High-5-Club.  Helene wanted to make a difference for children with chronic illness like Parker and their families.

Rochelle giving Helene a
High-Five

Now, what you need to understand is that Dawn and I have been working hard just to jump start High-5-Club and we only have a Facebook page, https://www.facebook.com/high5cluborg?fref=ts,  and a website landing page, www.high-5-club.com, so far.  We are a brand new non-profit with a 501c3.  We are still just trying to get everything lined up and along comes Helene who made High-5-Club her first official benefit event!  I just couldn’t believe it!

I went to the final of four card making sessions that she hosted.  As soon as I entered, I could feel the warmth of her heart.  Helene and her daughter greeted us all and guided us through such fun card crafts.  I knew I was there because of the benefit, but what I didn’t know was what fun it would be.  It was like I was transported away from my stress and I found myself relaxing, giggling, teasing, and conversing with an amazing group of women who were all there, not only to learn and craft, but to also give back to their community and make a difference.  I am thankful to each and every one of them.

At one point, Helene shared why she went into this business and she shared that she was drawn to it because she was a social worker; and what she liked about paper crafting was that it allowed for her to build relationships.  Her words resonated with me a great deal and as she spoke about how impressed she was with children like Parker; she took my breath away.  She was incredibly genuine and in that moment I was thinking how we are all interconnected and the relationships we build are the greatest gifts in this world.  The human spirit…the love we share…this is what pushes us on.

Helene donated $600 to the High-5-Club.  A huge “high five” goes out to her for our official first benefit and first donation. Yet, Helene has given much more through her kindness.  We are so very thankful.

 

Love Connects Us

Epcot Perry
Scavenger Hunt

Logan and Dad at Concert

Raising a child with chronic illness has taught us much.  We have learned how to reflect on our family strengths and weaknesses.  Ironically, I have learned that my biggest weakness is also my strength.  Sometimes I “care” too much.  Caring leaves me vulnerable, but it also makes me human. 

I care about all children, all families, people, my family, my children…  Caring has made me who I am and who I will become.  I am thankful that I care, but caring means we open ourselves up to multiple emotions and that can include not only joy and love, but also hurt and sadness. 

Recently, I have been deeply hurt.  I have learned that there are some, who we thought cared about our brave children, but have acted with cruelty.  A small group has been bullying and making fun of parents and their children with JA.  The sadder realization was to learn they too have children with JA.  I have to admit, this really shocked me and it absolutely choked me up as I held back tears…tears for every family and for the poor mom who witnessed meanness against her own child.  My instant reaction was to break away from all social media and groups and focus only on myself, my husband, and my children.  For several weeks I couldn’t even post, blog, or communicate with others about this because I “care”…I have always cared what others think, feel.

I choose to be open to my emotions…feelings drive me forward and push me to be determined to overcome.  The depth of my emotions continue to teach me many lessons:  judgment is inevitable; challenges present themselves; and we will fall, but we can pick ourselves up.  As I ponder these lessons and as our family faces our challenges, we allow ourselves to feel and then let go…moving through these emotions brings a sense of peace.  Our peace fills us with strength and our love propels us forward.  And as long as we act with love in our heart, it may leave us vulnerable, but at least we are being true.

Because our family cares so much, we are given the amazing and powerful gift of love.  We love each other dearly, but this love also connects us to others.  It is with others that we can battle this incredibly beastly disease and still enjoy life.  We are so incredibly thankful to the many that have rallied around our family. 

Gaming with Troy during weekly infusioon

I will admit, the beast of JA does try to stop us…and it can feel relentless at times.  But after we move through the appointments, tests, treatments, and therapies we try to insert a little fun.  Sometimes that fun is within the walls of our own home…other times we make an outing of it. We treasure these moments with each other, family, and friends.

I am happy to report that Parker’s labs are much better and overall his strength is getting better and pain is less many days.  We are slowly decreasing some of his meds and increasing his activity level.  We are still battling pulmonary issues and we do have a few set-backs from time-to-time but overall there is improvement and we will continue to support him as he takes baby steps forward so he can begin to run circles again.  He has a goal to go back to school full time next year, as he enters the ninth grade. 

Logan went to the orthopedic doctor and he does have mild scoliosis.  We will monitor it and he is starting PT next week.  Logan has just completed 10^th grade and on Monday he will be a freshman at the community college.  He has chosen to take 2 classes this summer and will continue to be dually enrolled for the rest of high school.  This is something he really wanted to do and he is so thrilled that he went down to the campus today to check it out and find where his class will be.

You are my master,
 I love you so!
SQUIRREL

We are grateful to experience the love we have.  Love is such a gift.  It strengthens us and fuels our dreams and hopes. Love connects us.   I really do believe that together we are better! 

Pushing Through Can Bring Happiness…by Parker

Today I woke up and it was just like any other morning. I lay in bed for a while in pain wondering if I could get up. I went to eat breakfast and my teeth and jaw were killing me so I just pushed through it. Then I had to take a shower and the water was cold. Normally when I get out of the shower, I get in the bathtub with Epson salt to relax my body; but this time I couldn’t do it because I had class and I was running late.

After my class, I was too tired for a bath; so I took a nap. Then things got even worse my mom had to wake me up to go to O.T.  When I woke up, I was crying in pain. I walked into O.T. in tears.   My O.T. began to test my range of motion while trying to cheer me up.   

O.T. was hard today but when it was over I felt a little better. When I got home, I had to do math… so I was prepared and tried to get into my virtual school but they updated the software, so I had to reschedule.  I downloaded the software and it took a lot less time than I thought.   I called my virtual teacher back but she was already busy so she told me another assignment I could do independently. I did it and felt really good about myself.

This morning when I woke up I didn’t even want get out of bed but by the end of the day I was happy and feeling O.K.  So do you want to know how I do it?  Well, it’s all because of my mom. If my mom didn’t wake me up and encourage me, I would not have gone to O.T. and wouldn’t be happier. And throughout all this, she was by my side cheering me on.  So my advice to you… never under estimate the power of family and always keep them close to you.

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

Our Son’s Body is Under Attack But He is a Fighter

Michael and I have been processing a lot…should we blog….shouldn’t we blog… We know that people who care about us want to know what is going on with Parker, but we have been processing some hard information lately.  After a family talk, we decided it was time we share…but please know this is hard.  We have been working through a lot and we have been careful with our words because we don’t ever want to over burden or worry our oldest son, Logan, especially since he has been fighting his own battle with vicious migraines.  I am happy to report that these migraines are getting more controllable and along with his medicine and infusions he is now quite good at biofeedback.  His therapist is amazing and we are very impressed with this technique.  Last Saturday he got a migraine, took his meds, and did biofeedback and worked through the migraine and it went away.  This is pretty major and we are so proud of him.

One reason we haven’t blogged lately about Parker is we wanted to first find out how Logan is processing all of this.  He is in a better place now and he wants us to continue to blog.  Then there is Parker, he has been processing some very intense and heavy thoughts because we got some additional scary news about a week and a half ago.  We are quite proud of Parker too.  He processed his concerns aloud with me and his counselor.  He too wants us to share what is going on.  Michael, the boys, and I have prayed and talked and processed and we feel that others need to know because we need support; we want others to learn about the various paths this disease takes; and we need help raising funds so that one day there will be a cure for children with juvenile arthritis.

Parker has complained for quite some time that his chest hurts.  In fact, he has had chest pain throughout this battle against systemic JA.  Several times it has been costocondritis (there are joints in the rib cage and they can become inflamed and painful), other times it has been the pericardial effusion (swelling of the heart lining), and sometimes it was his asthma.  But even after his last round of pericardial effusion he has continued to complain.  And when we were at the rheumatologists this last month he was having the pain again so they ordered a stat echo cardiogram.  It came out fine.  Thank God.  So then we talked about how maybe since we have been trying to decrease the steroids, that maybe it was his bodies way of saying “hold on…I like those steroids…I am use to them…now I have to work harder to breathe…”  So we thought maybe it was causing his asthma to flare because he is so steroid dependent now.  But, he also had been on this dose of steroid for over a month now. 

We decided it was time he see a pulmonologist to get help with decreasing the steroids.  Because Parker’s rheumy is about 2.5 hours away, she suggested we go to our local allergist (who knows Parker very well) and get a referral to a local pulmonologist that she recommends.  So we went and the allergist ran a PFT (pulmonary function test)…he failed…moderate obstruction.  So she increased Parker’s inhalant steroid and sent us to the pulmonologist for consult.  At this point, we were seriously thinking this was just his asthma (please don’t take me wrong…asthma is serious too…but you have to remember we have been dealing with asthma his entire life and we have felt like we totally had that medical issue under control). 

We went to the pulmonologist last Monday…Michael was out of town on business…oh how I wish he would have been home, because I felt like our world had turned upside down just as we had started to roll along a good path.  This newest doctor was such a kind and gentle spirit and I am so incredibly thankful that he had the nurse take Parker out of the room while he first explained to me what his impressions were.  It helped me hold it together better when he later explained to Parker. 

During our visit, Parker did the same pulmonary test again…again obstruction…then they gave Parker a breathing treatment…the doc’s theory was if the test results got better after using the meds then we know it’s just his asthma…if not, then it’s more…  He repeated the regular PFT and once again…obstruction.  This led him to further tests…a more complex PFT.  The spirometer reading was not good…  it showed not only obstruction but also restriction and this means he likely has mixed lung disease. 

So you might be thinking, what in the world does this mean…because I certainly didn’t understand it.  I am still trying to understand it.  Apparently there is no part of the body that is immune to the attack of systemic JA!  When they say it can affect any organ…well, now we really know this.  I mean…yes, it has already attacked so much…but this one organ really hit me hard…The crazy thing is, we have been celebrating because Parker’s blood work has improved so much.  He also had decreased swelling (although we noticed things are starting to swell again…and hurt more…and he is having a few low-grade fevers with rashes), but he has better blood work.  This disease is simply the cruelest thing I have ever witnessed. It teases with your emotions…gives you a false sense of security.   Our understanding is that with mixed lung disease, Parker is having both asthma and interstitial lung disease.  The pulmonologist said that he is like 1% of kids dealing with pulmonary disease.  This explains why his chest has been hurting and burning.  It also explains why he has been sleeping a lot more again.

So, yes, our son’s body is attacking itself!  And we are obviously all concerned about this.  The docs are working together…they are checking his meds, trying to figure out to what extent damage has taken place; we have more tests in the near future; and we are all arming up in our battle gear to fight alongside this JA warrior and win with PURPLE Parker Power.  Parker is strong-willed and we are so very glad that he is because he is fighting for his life and we love him dearly.

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.

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.

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



OUR STRONG KIDDO!
Thanks Ashlynn for
his very own Boggy M&M!



A quick update to get all of you up to speed on the Purple Playas’ most valuable “playa”:  Parker!  We are so incredibly fortunate to have a team of doctors, nurses, and medical office staff that powers on right along-side of us!  Through our appeals and persistence, Parker’s study drug, rilonacept, was approved through April.  The office manager said she thinks he is the first kid in Florida to get this approved.  Maybe now other insurance companies will jump on board and get this for the many others who also need it!  Truly the miracle we were hoping for!  We were so concerned about going backwards but now we can continue to move forward!

Another great piece of news is that this Friday will be his last overnight stay at the hospital for his IVIG infusion.  No he is not discontinuing it but rather he will be getting it at home weekly and a little bit differently (not through his port or IV).  The version he is getting is called Heizentra.  If I am understanding it all correctly, this is why:  by getting it weekly in a more concentrated but slower absorbing manner he will have less side effects and hopefully also better results.  This is because there will be a more constant level in his system.  There will be 3 probes (little needles) placed in his stomach and hooked to a small pump.  It will run for 1.5 hours each week and he can do other things while it is pumping in (tele-class, TV, Xbox…).  It also means less hospital stays, road trips to the hospital, and hopefully no more blasting headaches from the med.  He will also learn how to do it himself.   If we can get his levels up, he will also be able to be out and about without so much worry that he could easily catch something and land in the hospital.  Way huge!  We are very excited about this, especially knowing now that he is likely to be on this for life.  This will give him some normalcy back and empower him.  And we will all get to sleep in our own beds more often J!

We appreciate everyone who has rallied around us and supported us during all of this uncertainty.  We are incredibly thankful for your prayers, thoughts, and positive energy.  We know that Parker is an incredible and valuable “playa” and we are so happy you all are part of the Purple Playas Team!