Today is Today…the Day Before Tomorrow

I think that today was one of the hardest days I have had to face so far.  I am not quite sure why.  Maybe it was because this week was so intense (endoscopy/colonoscopy, port insertion, ankle/wrist splint fitting, and infusion treatment).  Maybe it’s because of all we, as a family are juggling (work, two boys with busy lives, housework, tons of medical appointments, etc).  Maybe it was because of the constant unknown and never being fully prepared. Or maybe it was simply because it’s been raining non-stop and it seems to be affecting every kid with JA that we know.

We try to desperately believe that things will get better.  We constantly pray for healing, strength, and relief.  We continually marvel at the strength of our family.  We pause to celebrate the little things that bind us to each other and appreciate the support of those who care about us.  Our hope is vast…but today is today…and in this moment, we are struggling to make huge decisions all while we continue on.

Every time Parker exerts his joy in the moment, it seems there is a harsh price to pay.  All week has been hard on his body.  He tries to push himself but with caution.  But it seems to be a constant battle to find that balance his body demands.

He made 2 hours to school this week.  This was amazing considering this week.  Half of his tests came back from his endoscopy/colonoscopy.  He does have gastritis (swelling of the stomach lining).  One small reminder that all his organs can be affected by inflammation of his systemic (hate that word these days) JA.  If this was the only thing we were dealing with, it might not be as big of a deal…but he is not eating well.  The other half of the tests are still being processed…stay tuned, hopefully with good news.



Parker's Port on Day 4, healing nicely.



His port is in and functioning well.  However, his body would not behave normally for this either.  The surgeon could not find a good vessel in his chest, so he had to go in his neck, therefore his port is subclavical (higher than normal).  And the surgeon also noted that he bruised more than normal.  He has some issues with how his blood pools and is bruising pretty easily.  When he came out of his surgery, he reported that his pain was at a 6.  Now let me clarify a bit.  He was a 10 at his joints, 6 at his surgical site.  And even when all his local anesthetics and anesthesia wore off, it never got above an 8.  Initially this totally excited me because he hasn’t reported his pain level below a 10 for about a year now.  He says it’s a 10-, 10, or 10+ every day.  But then as this sank in, my husband and I realized that Parker is in pretty significant pain daily.  So, we are incredibly proud of his perseverance, resilience, enthusiasm, and persistence.

Parker had a good friend over last night.  They had such a good time.  They played video games and chatted and watched movies.  When he left though, Parker hit rock bottom.  He slept all afternoon.  Yet another reminder of the energy that is lacking, despite how hard he tries.

Thanks Mina for visiting Parker in the Infusion Room.
Parker had fun playing a joke on the doc and nurses.
He said he was tired of all the attempts to get his IVs started
(thus the headband with syringe), so he decided to get a port.

So, Friday was Parker’s infusion treatment and doc appointment.  We got news that his muscle enzymes have been off since his hospital stay in July.  We were asked how we felt about the treatment he has been on for 6 months now.  I feel like we have some big decisions to make again.  I am not ready to give up on Actemra yet, as it is the only thing that has even touched this horrible disease.  But as I was reminded about his pericardial effusion, elevated enzymes, pluersy, and now his stomach, I felt like someone was punching ME in the stomach.  This is all VERY REAL…and I keep trying to be optimistic and yet there seems to always be some new battle to buck up and fight.  Parker is now considering joint injections.  We will see…  Parker asked lots of questions this last visit and has been processing a lot this weekend.  We all have.

Beautiful tile mural on the 4th floor of Shands Hospital!

On the up-side, Parker has picked out really cool colors for his new light wheelchair that we hope gets approved.  We had a fabulous time at our Boggy Creek Family Weekend and Parker’s Pal came and visited him in the infusion room Friday.  Thank you so much Mina!  Logan is planning the most amazing Family Connect Day and we have so many fabulous speakers and volunteers and a wonderful venue.  And all our laundry is done!  Very therapeutic ;O) 

Logan and Parker had so much fun at Boggy Creek with
Mina (he lost a bet and had to wear a dress...it was Pirates and "Princess" weekend) and Jake!
Thanks guys, you were the best and we look forward to the day you are both Docs...Maybe Pediatric Rhuematologists? Hint, Hint.

"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

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







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.

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 7^th 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 12^th 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 7^th 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.