Summer Snapshots

For the first time ever, Parker has gone 3 months between rheumy visits.  This is pretty amazing.  It is so wonderful that we are able to do his shots and infusions at home now.  He and his brother, Logan, go back to the rheumatologist in a couple of weeks.  And after going to the Juvenile Arthritis Conference last week, we have questions regarding both the boys.

So it is a very good thing that we have the blessing of a 3 month span because we have been very busy with both boys at various medical specialists and therapies.  Sometimes I find it so very interesting how one thing gives, so that we can deal with something else. 


OT

For instance, Parker has graduated from OT.  We are so incredibly thankful to his occupational therapist, Jackie!  We will certainly miss her…and just as OT has ended, Parker AND Logan have started up with PT (well, second round for Parker).  We found a wonderful PT just about 2 miles from our house.  And I have a feeling that I am going to need to start up PT soon too; and they see both adults and children. With our very busy lives and school starting back up soon, this too is a huge blessing. 

Parker is now doing auqua therapy and biofeedback.  We are happy with the progress thus far.  Our main goal for him and for himself is to help him building his “coping skills” and also strength, since we know this disease is not going away.  He is slowly gaining strength and using his chair less and less…but it seems to come at a cost and that truly is completely discouraging at times.  But he knows that his choices have consequences and he is willing to endure in order to experience fun.

Parker got to experience Camp Boggy Creek!  And even though he was in bed for 4 days after, he said that it was totally worth it.  The joy that this camp experience brings him is so profound.  With a childhood full of medical stuff, this is one place he can concentrate on “just being a kid” and we know he will be ok.  Camp Boggy Creek is equipped with medical equipment, nurses and doctors…along with a wood workshop, lake, fishing/boating, horseback riding, a theater, pool, basketball court, archery, swimming, crafts, cooking, a talent show, chants, friendships,  a dance, and much much more!  They accommodate all his needs, including food allergies.  If he needs an emergency infusion, they are equipped for that too.  Camp Boggy Creek is one of Paul Newman’s Hole in the Wall “Serious Fun” camps.  Check out their website:  http://www.boggycreek.org/   We are so thankful that the Arthritis Foundation’s Florida Chapter sends children to camp every summer and also funds Family Retreat weekends.

Kids Get Arthritis Too

A week after Parker returned from camp, our family headed to California for the JA Conference.  Let me tell ya, traveling with medical issues is quite adventurous.  Obviously we took the wheelchair but we also needed a suitcase just for all our meds, the nebulizer, and the bi-pap machine.  Lots of vials with liquid and lots of shots…of course everything needed to be double checked at airport security.  Even the head of security came over to give us tips for travel.  He was super sweet and he looked relieved for us when I told him this was our “one trip” each year.  He said, “Oh good, you’re not frequent flyers…”  In that moment, I definitely concurred.  Remembering to administer all infusions/shots was also a challenge…but we did it.  However, he might be anemic again…he was bruising something horrible on this trip.  We also had to make sure that his vials stayed cold while we traveled and that we got a frig in our room (which we had to have serviced because it wasn’t running cold).  Then there was the “rental car”…it had to be not only big enough for us and our luggage but also the wheel chair, but it cannot be too new that we are allergic to new carpet.  This is why we don’t travel much….

The opening night, Deborah Snyder, one of the Producers of Man of Steel, spoke to the kids about how they are all heroes.  She struck a huge cord with Parker because she too has adult on-set systemic arthritis (also known as Still's Disease).  This is what Parker has.  She took time to meet Parker and talk to him.  That warmed my heart.



 

Every year at conference, we meet new families and our children make new bonds.  This year, Parker became more “independent” which was really something to witness as he and his buddies hung out together.  Logan and I signed up to be AF Ambassadors and he is really excited about this.  I told him if we are going to do this, he would have to be lead.  He can’t wait to get started.  We also tacked on some vacation time after the conference and got to visit with Michael’s cousin.  What a fun day in Hollywood.



Parker, with his bi-pap machine on,
 woke long enough to put his
3 infusion needles into his belly
and start his infusion pump. 

Since returning from our trip, we have adjusted Parker’s bi-pap machine yet again.  We are hoping that he will feel even more rested and build more endurance since in several weeks he is starting high school and is planning on joining his brother at his school.  The boys had both of their ophthalmology appointments and both have clear eyes…we found out today that if the JA attacked Logan’s eyes, he would feel it and his eyes would get red…but he said with Parker it is quite different and it will silently attack with no clues.  That is why Parker’s eyes are checked more often.  We also saw the pediatric endocrinologist.    This visit just reminded us, yet again, how serious Parker’s disease is but we were not shocked by what the doc had to say….drum roll…..he is too short.  Well, when a kid doesn’t grow in 4-5 years, I think we knew this was coming.  But he said that according to his bone age test he would put him at about 5’6” to 6’…with him currently being at 4’9” we are going to put in on the bed each night and Michael will grab his ankles and I will grab his wrists and we are just going to stretch him out…do you think that will work?  But seriously, this does mean more tests and he said it was pretty likely that he would put him on growth hormones.  Some of this “shortness” could be due to his disease but we are sure that the long term steroid use has also contributed considerably.  Parker is taking it in stride…he said that he can be “Chip or Dale” at Disney and maybe even “Mickey” and then he informed me that there is a “payment” that people who are under 5’2” get due to their shortness (I think he is thinking of disability…who knows…and how would he know this).

Every day I marvel at Parker’s strength.  He has faced many challenges and he continues to problem solve, push forward, and plow through it all.  I love that even though his body is “weak”; he is not letting it defeat him.  At the conference this year, the children were asked to dress up like a superhero.  Parker decided he was going to be Professor X from the X-Men.  He had his bald cap, black pants, black shirt, olive green suit jacket, and of course, his wheel chair.  Professor X is the leader of the X-Men and he teaches these “mutants” (as they are called) that although they are different; they have much to offer and each has unique talents that impact this world.  Professor X is also an advocate for equal rights where all could live together in harmony.  Parker even made a poster with favorite quotes from “Professor X” to put on the back of his wheelchair.  But on opening night, he went to put on his Professor X outfit and the pants didn’t fit.  He quickly changed gears (even though we knew he was quite upset about this) and he put on his “Robin” shirt and cape that he had for his day at Magic Mountain.  And he still put the quotes on the back of his wheelchair.  So in “Professor X” style, he went out with his head held high and had fun.

 

 

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.

 

So Many Thoughts…

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

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

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

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

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

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

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

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

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

We Need Our Friends and Family

Dear Friends and Family~

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

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

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

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

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

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

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

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

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

Dancing at Camp

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

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

Our Children Together

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

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

Connecting at Conference

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


Dads



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

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

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

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

Mom and Dad Powering on to Find a CURE

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.

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.

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!

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.

From the Voices of Families….

Recently I asked families of children with Juvenile Arthritis, if there was anything they wanted the general public to know about JA what would it be…This list below is a paraphrased summary of their very heartfelt responses.  Just a window into the lives we live, thoughts we have, and strength our children possess.  From the voices of families…

·         Juvenile Arthritis is not an old person’s disease, it’s autoimmune

·         It affects internal organs, not just joints

·         Our children are not “fine”, just because you look good or are smiling

·         It hurts, even when smiling

·         It is more than just hurting joints

·         It affect joints AND muscles, skin, internal organs, personality, mood, emotions, and engagement/activities with others

·         It can be as bad as cancer…just because my child is not bald doesn’t mean he/she is not suffering

·         Kids do not always grow out of it when adults

·         Kids’s with JA can be as severe and worse than adults’ RA

·         There is no cure

·         It is not an old person's disease - it is an autoimmune disease!

·         it affects more than our children's "health"...it affects school, their relationships, their play, their quality of life...

·         it can attack anyone, at any time and we don’t know why

·         during one hour of the day they can look fine, and an hour late it can hit them hard

·         it can blind, cause deformities, and even kill

·         it does not discriminate

·         We also don’t know what these drugs will do to their bodies down the road.  Will they be able to have children?

·         It affects not only their health.  It impacts their school, relationships, play, and quality of life

·         Praying for relief so my child can live a normal life…for some this comes, for others it takes much longer, and yet others continue to have bumps in the road and struggle.

·         If the cure was spices, vitamins, and other crazy mixtures, all these children would already be cured

·         The roller coaster ride is never ending…bad days, good, days, emotions, doctors, stress, expenses, meds, remission, active disease, medicated remission, …and yet life continues to go on and we try to enjoy life and a happy childhood.

·         We do everything we can to let our children be children

·         It is not the same as grandpa’s arthritis, which is osteo….this is autoimmune and my kids may be cute but they hurt BIG time.

·         When people think our kids are fine and question our requests for prayers because they look fine, it is hurtful.

·         Brothers and sisters become fearful, emotional, and wonder if they too will get this.

·         The amount of chemo our kids use over their life-time is more than some cancer patients

·         You see my child smiling…I see my child when he/she cries, gets blood work, can’t sleep, goes through physical and occupational therapy, sleeping with splint on their wrists/ankles, getting ongoing IV’s, getting MRI’s, CT scans, xrays, joint injections, scopes, surgeries, shots, throwing up, in pain, with swollen joints, with fever, with rashes, struggling to walk, and yes…I too see my child smile and am so thankful that through it all he/she finds a smile.

·         It affects every child differently.  It’s an autoimmune disease and can be mild to severe and chronic and can be different from day to day

·         It strains a marriage, couples, relationships

·         It’s hard to balance between children

·         We advocate, educate…so others will begin to understand

·         We experience many financial burdens

·         It is hard to admit that I can’t “fix it”

·         A normal life is a struggle

·         Our kids miss out on things that their friends are doing, either because of their health, because of treatment, or because they cannot be around others with a flu due to a compromised immune system

·         There are over 100 kinds of JA

·         It affects our careers/work

·         It comes out of nowhere…one day you have a healthy kid, then you don’t

·         Some children are old enough to understand the seriousness of their disease…and the young ones who don’t understand are also scared

·         For those with severe forms of JA…kids face their own mortality…talk about dying

·         They ask us many difficult questions, some that we don’t have answers for

·         Some children talk about wanting to go to heaven so they won’t hurt anymore

·         We live in the moment, not thinking too far ahead

·         The drugs cause many side effects sometimes causing a need for more drugs

·         The alternative to not taking drugs could have grave consequences

·         The continual fatigue is the hardest

·         This disease steals “time” from all of us…

·         My child is losing their hair…and prior to her losing her hair, people didn’t realize how serious this disease can be.

·         We often hear…at least it isn’t _____...but hearing this does not make this disease better to families who live with it because it is affecting our beloved children.

·         This affects the whole family….these are our children...It's a full on battle everyday!

And yet through it ALL…our children

·         Endure it all

·         Are incredibly brave

·         Know a lot about compassion

·         Experience the depths of love

·         Are amazing

·         Are young

·         Want validation

·         Need encouragement

·         Want a voice

·         Do know how to have fun

·         Are overcoming tremendous obstacles

·         Are thankful for each other

·         Are blessed to have incredible strength

·         Can smile

·         Have a much better chance with better drugs…but more research is needed

·         Are strong

·         Hope for a cure

·         Want you to tell someone…everyone…raise awareness…please…