Friday, September 23, 2011

"Thanks" is Definitely not Sufficient to Express Our Gratitude

Our family would like to share our letter of gratitude for all that Make-A-Wish did to grant Parker's wish to meet Ben Zobrist and the Tampa Bay Rays.

September 18, 2011
Dear Norma, all Make-A-Wish Staff (including Melissa, Eva, and Maria), and the Rays,
My family wants to thank each of you for all you did individually and together to grant Parker’s wish.  I am sure you constantly hear that “there are not enough words to express our gratitude”.   I am going to do my very best to express our heartfelt appreciation.
As you know, Parker’s sense of self drastically changed the day that he learned that he has systemic juvenile arthritis (a.k.a. still’s disease).  He went from being a child who was actively engaged in sports and very active movement, to clearly being a spectator; but he still has a great appreciation for sports.  He has also struggled with thoughts of the possibilities of this disease taking over, not only his joints and muscles, but his internal organs.  This realization would probably be too intense for most adults, and so we greatly admire our son for his bravery and perseverance. 
A parent’s job is to keep our children safe, teach good values and problem solving, and to bring happiness to their lives.  As hard as we have worked to keep him safe, this disease has invaded his physical body.  We are desperately trying to stop its progression and the costs have been great.  As with many life threatening diseases, when one is faced with this reality the world seems to stop.  And yet, as our world stopped, the world around us felt as if it was moving at fast pace.  Our family has dealt with making hard decisions, examining what is important, and realizing that our faith must propel us forward.
When it was first mentioned that our child would qualify for Make-A-Wish, there were very mixed emotions swarming inside of us.  One was, “oh no, there are other children who need this more than our child”.  Another was, “well he doesn’t have cancer, so I don’t think he should apply”.  A third was, “but he is going to get better so this should be reserved for kids who will not”.  Then finally, we faced the “truth”…there is no cure for our son’s JA; he is going to live with this the rest of his life; and he deserved to experience happiness and something to look forward to and celebrate.
Of course his wish every single day and with every single shooting star, fallen eye lash, dandelion, prayer, and birthday candle is for a cure…we wish that Make-A-Wish could grant the cure!  And although our wish for a cure has not come true yet, Make-A-Wish and Ben Zobrist has helped us with raising awareness that a cure is so desperately needed for systemic JA and all juvenile arthritis diseases.  This gift, to a parent, is priceless. 
Most importantly, Make-A-Wish and Ben Zobrist has brought profound happiness to our child.  Parker has long admired Ben Zobrist.  Parker feels that he is the most “loyal” fan of all time.  He began following Ben’s career very early on and what he loves most is the versatility that Zobrist has.  When he talks about him, there is pure excitement in his voice and amazement in his talents.  He admires that Zobrist takes on a challenge and that he stretches himself and his possibilities.  As parents, Michael and I both enjoy this excitement around the game of baseball but we have always felt that Ben Zobrist is a great role model for children as an athlete, father and through his faith.  As an educator, I am deeply touched that he thinks of our youth and does the “take Zobrist to school” program.  In talking with Ben Zobrist over lunch, my thoughts were confirmed; he is an exemplary role model for our children.  Parker “believes” that Zobrist can achieve his goals.  Interestingly, Parker is a lot like Ben Zobrist…Parker doesn’t give up, he stretches his abilities, and he has faith that one day there will be a cure and that his life has purpose.
As you know, this entire experience has been bitter sweet.  The same week that Parker was granted his wish, we were also dealing with my grandmother being released from the hospital with heart issue and then my grandfather being rushed to the hospital with hemorrhaging on his brain resulting in a stroke.  On our way to our Make-A-Wish, I went to the hospital to say good-bye to my sweet grandpa. 
As we switched gears, the four hours we spent with Ben Zobrist and the Rays were shear bliss.  It was as if we escaped reality.  We were greeted with love and excitement and the Rays took thoughtful care in including our older son, Logan, in the day of excitement.  We so appreciated that gesture. 
We pushed Parker in his wheelchair to the field and he go out of his chair to walk to home plate.  From that point forward the adrenalin he experienced gave him the strength to stay out of his chair the entire time with the Rays.  After standing on home plate and swinging the bat, Ben Zobrist entered the field.  Pure delight engulfed Parker’s face.  That moment seemed to take my breath away.  The joy was apparent, in his face, in his body, and I am sure it was filling up his soul.  This joy continued to grow as he interacted with Zobrist.  As exciting all the gifts of signed cards, bats, and jerseys were, the gift of time, love, and pure engagement with our son was the true gift.  Ben Zobrist brought our son’s joy back to him and us.  If I wasn’t there, in the moment, I would not have believed that Parker was throwing that baseball so accurately and forcefully to Ben.  It was as if he was “cured”…
I am sure Ben Zobrist has no idea that Parker had not had much strength or endurance for quite some time.  In fact, as soon as Ben walked away to prepare for the game, Parker sunk back into his wheelchair and admitted that he needed all his meds and that he had to leave to lay down.  Most days he feels terrible and deals with multiple medical appointments each week.  But the four hours with Ben Zobrist took all that away.  He was a kid again, filled with excitement and joy.  He had fun and felt “normal”.  We are so thankful that Ben Zobrist agreed to meet Parker and he spent so much time truly in the moment with him.  This gift was amazing and it keeps on giving every time he tells someone about his experience.  He lights up all over again, his voice has energy and so much excitement; it is hard to believe how very sick he is when he recalls his Make-A-Wish. 
Ben Zobrist’s and the Make-A-Wish Foundation’s gift has also spread to others.  Parker’s brother was intensely inspired by Ben’s kindness.  Both boys can see there is so much good in this world.  Parker has been recognized by others as “the child who had his wish granted and met Ben Zobrits”.  He received the most amazing letter of encouragement and admiration from a youth leader in the community.  And his story has touch people beyond our community.  A woman in NY sent him a Ben Zobrist bobble head from time when Zobrist was with the Tri-City Valley Cats.  So his Make-A-Wish is truly the gift that keeps on giving.
I have wanted to write this letter much sooner than now, but as you know, my grandfather passed away the evening of Parker’s Make-A-Wish.  So our family has been swelling with the entire spectrum of emotions.  But I must reflect for a moment on my grandfather.  He has taught us much in his beautiful life time.  He was a man of pure kindness.  None of us who knew him can ever think of a time when he was angry.  He always treated others with love and a helping hand.  He had a gift of granting children many beautifully contagious smiles.  He had a way of sharing his heart and bringing happiness to others.  I know he would have said that Parker’s Make-A-Wish was “ the most to say the least” and he would have thought that meeting Ben Zobrist would have been “top drawer” and would have reflected on the fact that all we need is a “smile and a few kind words”.  Thank you Make-A-Wish, the Rays, the Don Cesar, and most importantly Ben Zobrist your smiles and kindness and for granting Parker the gift of happiness. 
With much love,

Rochelle, Michael, Logan, and Parker Lentini

Sunday, September 18, 2011

Make-A-Wish...A Picture is Worth A Thousand Words: By Parker

Limo arrives to drive us to meet Ben Zobrist

Stop at Subway to pick up food for our lunch with Zobrist




Dad and Mom in back of limo

Getting interviewed by the press






Giving Ben Zobrist some gifts for him and his kids

He thanks me for the gifts



Ben gave me some autographed baseball cards



Time to have some fun...Ben asked me to play catch

Ben and I playing catch




Ben and the family


As they stretched for the game they watched college football.


Longo autographes for us


Before game stretch


Time to answer some questions for the paper


Look at Zorilla on the wall


Answering some pre-game questions with Joe Madden


Dad and Kotchman


Logan and Upton


Upton and Zobrist laughing at our funny remarks


Johnny Damon signs my mini bat that Sadie gave me


Kotchman likes my number


John Jaso signs some stuff


Ben gave me his jersey and autographed it for me


Batting practice


Desmond Jennings didn't realize I had a lot for him to sign


Kelly Shoppach is very nice




Watching batting practice



Dad takes a picture of us and David Price



Mom poses for a picture with her new hat


Ben Zobrist hands


Ben Zorist signed my custom hat


Ben Zobrist feet

Don CeSar Sous Chef Jeremy Anderson


The pastry chef made me "the reveal desert"

We sat at the special table in the pastry kitchen


She made me an edible turtle, but I didn't eat it

The Don CeSar chefs gave me a shirt and cookbook

Thank you Make-A-Wish!!!!
  

Mom and Logan after Don CeSar tour






Saturday, August 27, 2011

Bad Stuff Happens to Good People...

Trying to make up some work hours today and feeling a bit paralyzed in working.  So I just had to stop and write a moment.  This week has been incredible.  It began with having to take Michael for his scope and finding out that my grandma was in the ER and being admitted for her heart after a horribly pain-filled weekend for Parker.  And we also received news that one of my sisters was being scoped too.  Then on Tuesday we ended up in the ER for Parker.  Thursday we did tests on Parker’s heart.   I also found out on Thursday that my grant at work is being significantly cut.  Friday Michael had blood work and scheduled a scan for next week and it was infusion day.   Needless to say, Parker only made one period of school all week….And today, I woke to my other sister having to go to the ER.  And yet as I try to be “productive” I cannot because I just need to reflect on the week.
Michael’s scope went well…quote from the doc, “well, good news…he doesn’t have cancer” so now we can focus on his kidney stones, yet again.  But that we can handle.  Grandma is doing better, meds are adjusted and I am happy to say she is home and in great spirits.  My sister is still waiting on her scope results and my other sister is now home from the ER and also has a kidney stone.  So we can now start a kidney stone club (2 sisters, my mom, my aunt, and my hubby…any other takers….). 
Parker went to his pediatric rheumy yesterday and had his infusion.  We got to spend some time with friends.  Parker’s buddy Mark (same age) was there with is sister who was getting her infusion too.  And we met another lovely girl and her mom.  She is 14 with spondy  JA and hasn’t met any other families yet.  She now has met two J and we are surely going to get her connected.  And we brought another huge batch of infusion treasure box items.  Thanks again to everyone who donated.  We still have enough here for about 2 more trips.
Parker’s heart is doing good and we are so very thankful!  Even his pericardial effusion is better.  What a relief!  He is still having vasculitis and bruising.  And the doc is most concerned about his GI issues and would like him to be seen by a pediatric GI doc.  So that is our next stop.  He does have some pleurisy too.  Parker took all the news well.  Even his doc commented on his strength.  We also discussed his appointment with the physiatrist and she agrees with his recommendation for night splints on his wrists and ankles and a new wheelchair.  We reviewed how PT went and that we need to start OT.  And my goal prior to the next visit back is to get Parker a counselor.  We also discussed this and she was really good with Parker and explained to him that all that he is going through would be hard even for an adult and that it might help to just talk about it with someone.  Finally, the doc and Parker discussed that it was time to get a port.  I have to say that I was not surprised…actually Parker prompted the conversation because he told her that every time he comes, it take 2-3 sticks to get the IV started due to scar tissue and rolling veins.  So, we need to schedule getting that done too.
In the midst of all this craziness this week… I had begun discussing with Michael the idea of reducing my hours to 32 hours.  We sat last weekend and I could not figure out how to get more than 35 hours in, in a week because of all the medical stuff and therapies.  Not to mention that Parker is on an altered schedule with his IEP and Logan is very active with high school (and we want to totally support his involvement).  So I began discussing this possibility with work and I can do this and maintain health insurance, so we are pretty sure that I will move to this soon.  Because of this previous discussion of reducing my work hours, when I got the news that my grant was being cut 18% this seemed like a natural solution to that problem.  Otherwise I would likely have to let someone on my staff go. 
 I know that bad stuff happens to good people…but good stuff does too.  We have met amazing people through this whole JA experience.  We have seen the good in people.  We have received love and support.  And we are watching our own children strengthen and bond even more while also reaching out to others, advocating, and teaching.  Many children need this love and support.  Please continue to reach out, advocate, and educate others about JA.


Saturday, August 20, 2011

I Wish There was a Cure for JA!

Once again, a lot has happened in a short period of time.  In July, we were very excited to see Parker make some progress for the first time in 2.5 years.  For about 3 weeks, we really felt like the Actemra was starting to make an impact on slowing down Parker’s systemic JA.  We even saw his CRP levels drop to normal and he was moving smoother and out of his wheelchair a little more often.  So when we left for the Juvenile Arthritis Conference in Washington DC, we had some new found hope.  The conference was the most amazing experience we have ever had as a family.  Not only did we learn a ton, but our children and us made some wonderful connections and had lots of fun.  You can see our family JA conference video at this link:  http://www.youtube.com/watch?v=glSnMQn9ZHg

Soon after our return home, Parker got very sick.  We ended up spending 9 days in the hospital because Parker got a virus.  The virus caused his systemic JA to flare horribly.  I have to say that this is every parent’s fear for their children with sJA.  His joints swelled, his systemic rashes flared, he could hardly move for days (although he gave it a good try daily), his stomach and bowels got so bad he didn’t really want to eat, he got petechiae (tiny bruises) again, and his liver, muscle and heart enzymes went wacky.  So when he said his whole body hurt…his whole body hurt!  On day 4, he started running a fever and that caused great concern.  What I learned while he was in the hospital is that he will not present like most kids when he gets sick because of all the immune compromising drugs he takes.  So for him, he seems to have wacky body temperatures.  He hangs at 95-96 degrees a lot…when he gets even to 99-100 it can cause great alarm because he might not run a fever when other children would. 

Shands hospital was absolutely amazing.  The pediatric infectious disease doctors teamed with his pediatric rheumatologist/immunologist and the nursing staff was the best we have ever experienced.  I had enormous faith in their ability to provide the care that Parker needed. The child life specialist made a very special connection with Parker and even on the days he could not leave his room, she made it a point to bring activities and volunteers into his room.   The love and support that we received from so many people (some strangers to Parker) showed him that there are people who were praying for him and cheering him on to improve and we are so incredibly thankful for that.  Our last few days there were the hardest for me, although I could clearly see that Parker was slowly starting to improve.  I realized that Parker’s disease progressed during this virus…even though I had the sense something was happening with his heart, they shared the news that there was swelling and fluid around his heart (pericardial effusion).  I think I was handling things pretty good up until that moment…my heart ached for him so deeply it hurt.  I listened to his doctor explain the complexities of systemic JA to the resident doctors and it all the sudden seemed REAL…it was quite a moment…I remember thinking, this doctor is incredible and she is impacting the minds of these newest doctors and a part of me was cheering her on for advocating and educating… and then another part of me was thinking this is MY child… and as much as I try to explain to some people how real this really is, they just don’t or can’t seem to see the enormity of it.  I shared with the doc and the nurse practitioner that I wish they could explain sJA to “everyone” because it is so hard to explain.  They could relate.  They said that sometimes people say things without realizing what they are saying…even other medical professionals and they are always trying to educate.  For some reason that gave me comfort. 

Parker has had one infusion since coming home and we are slowly decreasing his steroids with success.  Yes, he still is hurting, but his joints are not swelling and he seems to have fewer rashes and better energy.  He still has these little bumps that we need checked but he is doing better.  In fact, he started school Thursday.  We LOVE his school!  They allowed him to do a presentation to the entire 7th grade!  We filmed it but the quality of the sound is horrible.  We are going to re-film it this weekend and try to post it.

We did have his IEP meeting.  He is now classified as “Other Health Impaired” and is on an altered scheduled.  He has a shortened school day with 2 classes through virtual school.  Virtual school starts Tuesday.  He is also staying home on Wednesdays to give him a “down” day.  The autmentive/alteranative technology specialist is coming soon to the school to evaluate him to see if there is a form of technology that could help him out since writing is incredibly hard for him now.  And Hospital/Homebound is still our challenge.  Will update later on that.  I am choosing to focus on the positives tonight J
 
Parker also had his 12th birthday a week ago.  He celebrated it twice.  One party with family and another with his JA friends.  His good friend Sadie also had her 7th birthday and together they collected presents for the infusion room’s treasure chest.  It’s going to take us about 3 to 4 more visits to drop off all the gifts we got so much!  Thank you everyone! 

In closing, with every birthday candle blow-out, cake cutting, shooting star, fallen eye last, dandelion blow….the wish is always the same:  We wish for no more JA pain and a cure for all children!  Prayers, love, hope, and healing hugs to each child who keeps on enduring with all the resilience their little bodies can muster up.

Monday, July 4, 2011

Our Family Stands Together

Today I take the leap…and write.  Lots has happened but little has changed…at least physically…medically.  But emotionally, our family is stronger…and getting better at dealing with the immense emotions that sometimes fill us.  We want to stay positive and hopeful… we feel some people are slowly drifting away from us.  We understand this, as we can barely handle what we are enduring…but we must and we do.

The doctor has confirmed (although we knew) that Parker is severe.  As hard as it is to hear that your child’s condition has no cure (yes we knew this too)…but to “hear” it aloud…hurts to the core of our hearts.  Yet, Parker’s doctor spoke with compassion, determination, and love.  As real as she was about the enormity of what we are dealing with, she paused to be a real person and for that I am forever grateful.  We are in this together…Our goal is to slow the progression of both the vasculitis (http://www.webmd.com/rheumatoid-arthritis/guide/vasculitis-treatment) and the systemic effects of the JA.  Just to catch those up to speed who don’t realize what this mean.  With the systemic effects of this disease not only are his joints at great risk, but also his internal organs (heart, liver, spleen, and eyes).  We also talked about his physical activity.  We agreed to let him try to be physical, even if we know the consequences…because if Parker is willing to deal with the consequences then so are we.  After Parker plays physically, he usually is in immense pain and his joints, especially his ankles, balloon up and he sometimes needs an intermittent infusion/meds.  But we all feel strongly that he needs to “be a kid” whenever he can.

We will do absolutely everything we can to stop the progression of his JA.  The doctor even mentioned a child who had a whole bone marrow transplant but we are not anywhere near going down that road.  The good news is that there is a new study through CARRA called RAPPORT (drug: Rilonacept) (http://clinicaltrials.gov/ct2/show/NCT00534495) and it’s for children with systemic JA (http://www.medicinenet.com/stills_disease/article.htm).  Parker’s doctor is working on getting university approval right now to be a part of the study.  This is huge; it means that there is still something else to try.  But it is also incredibly scary…however; every biologic drug we have tried so far has been scary. 

There is some really good stuff also happening in our life.  We got a scholarship to go to the Arthritis Foundations Juvenile Arthritis Conference in Washington DC.  This is a great opportunity to meet other families and to learn more about JA.  The lead principal investigator (http://www.jrheum.com/subscribers/05/05/763.html) of the RAPPORT study will be at the conference and we will have the opportunity to hear him present.
 
Parker also went to camp last week at Boggy Creek (http://www.boggycreek.org/).  Boggy is a camp for children with serious illnesses.  It is one of Paul Newman’s “Hole in the Wall” camps.  What an amazing place!  I am hoping that Parker will blog soon about his experience there.  In some ways, this experience showed him how involved he really is…sadly he was teased by some children with hemophilia (they joined children with JA that week) because he had to use his wheel chair and they didn’t understand why sometimes he needed it and other times he didn’t.  He also needed an emergency infusion by mid-week.  While getting his infusion, one of the counselors stayed with him and played games.  Thank you Trent!  You were amazing with Parker!  Parker made it at camp all week.  He made incredible friendships and he knows that he is not alone in his battle.  He missed being there immediately.  While at a family party the day we picked him up, he started to cry because he missed the people he met at camp.  Thank you Boggy Creek for giving my son a gift like no other.

Parker's Cabin Group at Camp Boggy Creek

Last Friday night, the Make-a-Wish dream team came to our house.  Another bitter sweet moment for us…Parker could not maintain the conversation.  He had to go to bed because he had his Actemra (http://www.actemra.com/actemra/rheumatoid-arthritis.html) infusion that morning and it totally wiped him out.  The 2 beautiful women who are Parker’s wish granters were so sweet and excited and it was fun to “dream” together.  We will let you know what comes of his “wish”.

So again, I apologize for the length of this blog…I know that I should probably blog more frequently to avoid this.  But honestly, this is so hard for me because I want to write about good things…who wants to only read about negative stuff…I know it can be draining, but imagine for a moment…”living” this.  This is our reality.  Life continues on all around us.  We watch the hustle and bustle of folks’ day-to-day happenings.  We continue with our daily tasks:  work, meals, chores, and a little bit of fun here and there.  Yes, even we have some fun.  And then we have all the doctor appointments and we live at the pharmacy.  Seriously, we are there 3-4 times a week.  And then there are all the daunting tasks that still need to be attended to, all of which will take “time” in our hustle and bustle:  physical therapy, dental, extra eye appointments, new eye glasses, and ortho appointment…oh wait, and 7th grade immunizations (but they can’t be live vaccines…).  Can I just say, thank goodness that school is out for the summer!

Of course we also try to balance all this with fun stuff for Logan!  He just finished row camp in prep for joining the high school crew team.  He is really gifted at rowing and loves being on the river!  So in spite of all the difficulties in our journey we have many gifts…two amazing boys with a fabulous relationship, new friendships (with our JA families), a new car (the van could no longer make the journeys to the hospital), and both boys made straight A’s.  WOW!  And then there are the beautiful flowers in our front yard …that remind me daily that the world is full of good....while their blooms stretch upward towards the shining sun and their supportive roots are planted firmly in the soil so they stand up strong…our family is standing up strong!