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Thursday, August 21, 2014

The Joy of WALKING...Don't Need That Wheelchair Today!

When Parker didn't get into summer camp this year it devastated him.  In the past 3 years, Parker has not been in traditional school due to his medical issues and so camp is one of the very few opportunities he has to be around other kids and to have fun.  He spends way too much time in hospitals, getting procedures/tests, and in doctor offices.  One night he was in so much pain that he tried using his bio- feedback and think of his "happy place" and he thought of Boggy...but that turned into much grief.  He came and woke me in the middle of the night crying hysterically, because in that moment, at 3:00 a.m. in the morning, he realized that he was not only in overwhelming pain but grief with the thought that he wasn't going to camp this summer.

Three days later (so much has been coming in 3’s for us lately), we got a call that a spot came open and he could go to camp.  We were hesitant to let him go because he would not get back from camp until just the day prior to school starting; and he was re-entering into high school this year.  We know that camp can completely wipe him out because he uses so much energy...But we decided to send him because this is the one thing in his life that brings him complete sustaining joy.

Because Parker was in his "happy place" at camp and we knew that he was being safely looked after with the amazing medical staff on hand, my husband and I decided to take a short weekend trip to the beach, our "happy place".  We have not been alone on vacation for 5 years.  And our oldest son came to visit us on the beach each day to skim board..."his happy place".  We all experienced the JOY of camp...

We were actually a little nervous to pick Parker up from camp because we didn't know what physical condition camp would leave him, as he had to start school the next day.  We never, in all this journey, would have expected to see the "Parker" that came home that day...He came home a happy, stronger, more energized child than we have seen in 8 long years of struggle with this very mean disease.  And, because the camp schedule has an early rise-and-shine kind-of day...his sleep schedule was also now on track for school days.



And the next day, the first day of high school...the first day back in traditional school with no hospital home-bound, no more on-line classes...Parker didn't just decide to re-enter school...he decided to leave his wheelchair behind and WALK through those doors and into his new-found strength and re-boot on “being a kid”.  He did it!  And he has been doing it all week!  We know that Parker's strength and drive brought him here!  We know that our many prayers and continued hope pushed this opportunity into his path.  But what we didn't know is that Camp Boggy Creek would give us and our sweet child a gift that is beyond measure and is full of JOY for our entire family.  

The words “thank you” are not enough. Our hearts burst with appreciation far beyond what we could say with our voices.  And we are so very thankful that the Arthritis Foundation made this possible; that Paul Newman had the vision and love to start these amazing camps for children with life threatening and life altering chronic diseases; and that there are volunteers, staff, and medical professions that give of themselves so that our children may simply LIVE LIKE KIDS.  We love you dearly!
Much HOPE and LOVE for LIFE,

The Lentini Family

Sunday, July 20, 2014

I Can See with my Heart…

In trying to “escape”, all becomes clearer.  I could focus on one moment at a time…  I was not “looking” for clarity, but it found me, through my heart.  Juvenile Arthritis is not something our family can “escape”… but it is our gift.

I often hear:  “I have JA, but it does not have me” or “My disease does not define me…”  I find both of these statements interesting.  I do believe that we are always PEOPLE first!  I do believe disease shouldn’t define you or “have you” and yet…even in moments when we try to “forget” or “escape” and just “be”, it is deeply entrenched in OUR lives.

I believe our family has somehow become stronger because of JA.  And we must “identify with it”.  It obviously is impacting us.  Three out of four of us have autoimmune and immune issues.  We must live with it…we cannot escape it. Yet…JA is only part of our lives.  We are a family; my kids have many talents; my husband and I both work with passion and drive; our family shares much love and fun with our family and friends who give it right back to us and fill us up with strength and joy.  We are blessed!

Our summer vacations are now built around the JA Conference each year.  This year, JA brought us to Colorado.  We were fortunate enough to be a family who the Arthritis Foundation helped fund going to this beautiful event and location.  This year was the 30th anniversary of the
30th Anniversary Tree planted by AF
JA Conference and over 1,000 people went back to where it all started, 30 years ago, with one mother’s dream who lead the way.  Back then, the conference started with just over 100 people…and now it is stronger and larger than ever.  I had the amazing honor of meeting this mom, Dawn Hafeli, and we talked about the then and now.  She was so pleased to hear how well Logan was doing, a little surprised that I too had RA and Graves, but you could see the concern on her face when she asked about Parker and I shared all that Parker has endured.  Yes, we have come very far with medicine.  There are options that never existed before…but we have absolutely no idea of the long term effects that these biologics, chemo drugs, anti-organ rejection drugs, and other treatments and what they will do to our children’s bodies.  We have become a generation of HOPE…dealing with the present time…the most urgent need…the lifesaving decisions…with the HOPE that it will be ok in the future, not looking too far ahead and trying not to ponder on the past…just escaping in the moment and living.

And oh how we lived it up in Colorado!  Conference is an amazing experience.  We had the opportunity to connect with our “extended JA family”, share what has worked and not worked, watch our children with JA and their siblings connect and smile through their joy, learn about the disease and treatment, shed a few tears of joy and sadness, and to feel hopeful through many stories.  I am always incredibly amazed and eternally grateful for all the volunteers who coordinate this event and to the medical staff who give of their time and expertise.  It is humbling and empowering.

There were three individuals who personally impacted me and my family a great deal on this trip.  We felt that we were meant to be in these moments with these individuals to “see with our hearts”.  Parker got very sick on Saturday during the conference and had to go back to the room with some very concerning stuff that I won’t get into because it is too personal…But because he went back to rest, he missed the one speaker he wanted to see the most.  As he put it…he wanted to see the “lady who could take her eye out”.  Yes, that news spread through the kids’ rooms like wild fire. 

The conference had ended and was all packed up.  As we walked outside, our little friend, Sadie, took my hand to take me over to introduce me to her new friend…”the lady who could take her eye out”… Joy!  I am sure Joy hears this all the time, but she exudes Joy and she does justice to the definition of JOY!  She was surrounded by her amazing family.  Like me, she is a mom with RA (really she grew up with JA) and has two children with autoimmune JA and she has an incredible supportive husband who stood by her side.  Joy grew up with JA and as a result has uveitis.  It took her vision from her but she sees more clearly than most people I know.  As our families talked with Joy, she explained what she has gone through, introduced us to her guide dog, and showed us her prosthetic eyes…and yes, Parker held them as Michael totally wigged out and had to look away.  That made us all crack up laughing. 

Joy then knelt down and listened to Parker’s every question and talked to him about his current vision problems with such care and love that she pulled me deep into her heart.  She knew…she knew what he felt, what he was thinking, what he was scared of…but she also deeply knew what I felt, what I was thinking, and what I was scared of because her daughter also has uveitis.  She stood and started speaking from her mom heart.  Her words touched me to the core.  She could see me fully and clearly with her heart.  NO ONE has reached into my heart so deep before…and as she began to cry in front of me my tears flowed.  Joy reached for me and held me in such a warm hug as our bodies both supported each other in a free flow of momma tears…together, crying, loving, hugging, and knowing…The whole bunch of us…standing there in tears with such a huge exchange of LOVE that can only be seen with the heart.  Of course, Parker was crying hard by now and Joy shifted from me to comfort and reassure him.  I watched as her words and care cleansed my son who had been holding in so very much for so very long.  And in that moment, I was glad that Parker had missed her session with his group because this was far more impactful and meaningful.  This understanding was such a gift and has been inspiring my son ever since. 

The second individual who walked into our lives on this trip was not a stranger to us at all.  It was our sweet dear friend, Emily.  Emily also has systemic on-set JA and she has been a little mentor to me and a buddy to Parker.  In the beginning of this journey we met Emily at our very first conference in DC and we fell in love with her.  Ever since, our two families have been very close even though there is quite a few miles between us.  Emily did an amazing thing for kids with JA and their families…because she is amazing herself!  She hosted a golf tournament to raise funds for the Arthritis Foundation and High-5-Club.  At the conference, she surprised Parker and Sadie by presenting them with a check for High-5 for $2,500.  This gal has one mighty big heart!  She always has touched me with her contagious smile and I was so deeply touched by her excitement and love and her desire to help others.  We love you Emily!  You deserve the hugest of High-5’s!  And I am so glad you and your family got to spend time with us snow tubing and just hanging out.

First snow balls ever!












The third individual who allowed me to see with such clarity through their heart and love was quite unexpected.  In fact, we didn’t even see him in Keystone at the conference, but rather in Denver before heading home.  I got a Facebook message from his wife asking if we were in Colorado.  She had recognized the landscape…and get this, they live in Orlando, Florida but were in Denver for a benefit and wanted to meet us for dinner.  This was one of those moments when I realized we were exactly where we needed to be in this very moment.  So, we met George and Lisa for dinner far away from home…it was such a nice time because so often we see them at Arthritis Foundation events or the Parrott Head’s Fruitcakes in the Alley (they host the event) but we never really get to just sit and talk.  We started to tell them all about the conference and what fun we had in Keystone and that the boys saw snow for the first time and that we went snow tubing in the summer!  We shared how we met Joy and how amazing Emily was for raising funds… and then Michael told them that I was the chair for 2015 JA Conference; and it was going to be in Orlando! 

Lisa & George at Fruitcakes in the Alley
Well, talk about being in the right place at the right time…they asked more questions and they graciously offered to help!  This dynamic duo is quite the pair and anyone who lives in Florida knows why…every year they put on the Fruitcakes in the Alley bowling “party”…It is definitely a “party with a purpose” and they donate all the proceeds to the Arthritis Foundation in George’s daughter’s name.  His daughter, Jenny, passed away from systemic on-set JA.  When this group parties, it is for a major purpose…they know all too well the devastation that this disease can bring.  This was the very first time we got into a deeper conversation about Jenny.  Parker asked many questions.  I sat there in complete awe…Parker asking questions; and George kindly and lovingly answering… I could not even begin to imagine how hard that conversation was for BOTH of them.  And yet, George shared with such care telling us the struggles that Jenny endured and the things she overcame with such bravery.  A few things really impacted me…one, Jenny was driven to succeed and made incredible grades in school.  Two, she had every joint replaced…both shoulders, both hips, both knees, ankles, hands/fingers, feet, jaw…I can’t even begin to imagine that pain.  And three, she participated in first of the biologic drug studies.  I keep thinking how strong and brave both she and Parker were to do these studies that clearly are impacting future children’s lives.  And here, in front of me, sat this strong and caring father who has lost his most precious gift in the whole world; and he was giving my child the gift of life…through his daughter.  And he continues to give the gift of life…their team, the Parrot Heads, were the number one team in Florida this year raising over $30,000 …with dollars going towards family stipends to attend the JA Conference, funds making it possible for children to go to camp and enjoy “just being a kid” in a safe environment, and money towards a CURE.  I can see with my heart…love is in everyone and Jenny and George continue to share that love.

After reading all of this to Parker, he asked me to add this paragraph he wrote about the 4th person who really impacted him.  Please read below:


Recently I went on vacation to Colorado. I went there partly for the JRA conference but also for a family vacation.  In the beginning, it was pretty normal, just like the other conferences; but as we got into it, it got even better. On the last day of the conference, I met one of my brother’s friends, Kristen. Kristen is 20, so I was confused as to why he was introducing me to her. As we got to talking, we ended up having a lot in common. Then she told me she is starting Hizentra.  Hizentra is like IVIG but you give it to yourself once a week at home in your stomach with 3 needle probes that are attached to an infusion pump. Kristen told me she was nervous about starting it.  I was doing mine later that day; so she asked me if she could watch. So of course I said yes. Later that day, Logan called her to come over. We ended up showing her how to do the Hizentra infusion and I even made her poke me with the needles… she was freaking out but she did it. After we were done, she said she felt better about it now. When we were waiting for it to finish, we talked and really got to know each other. Then we finished and I made her take the needles out. I really felt like I connected with her.  Thanks Kristen, my Hizentra buddy forever!!
P.S Then we played golf I won.


 We had an amazing trip and this year my aunt and uncle came with us to learn more about JA.  It was a wonderful time in Colorado.  Enjoy our pictures...
Keystone with Aunt Sandy and Uncle John 
JA warrior BBQ after the Conference
The Hoe Down

New Skate Boards



Smiles light up the room
Snow Tubing 
Silly pose

Love Land Pass

Lunch in Breckenridge at Kobe's

Hanging out in Breckenridge

80's Dinner

Miniature Golf

Roller Coaster Fun

Denver Botanical Gardens with Chahuly Exhibit

Snow Tubing

Aunt Sandy and Logan


High-5 to the Assistance Fund for donating to the AF!

Practicing our "Florida"  Announcement

The kids announcing that the 2015 conference is in Orlando, Florida


We went snow tubing with the Tonnings.



Colleen and Rochelle
Logan and Caitlyn




















Vail Trail




















Our Elevator Buddies....
Jennifer made us shirts this year!  How cool is that!  JA brought us together and the elevator made us life-long friends. And finally, enjoy the video of my wish for all kids with JA.
video

Thursday, June 5, 2014

We Have a Super Hero Comedian in the Family!

Our super hero, Parker, is the strongest and bravest kid that we know!  After two days down on the pediatric floor, he was moved back up to the pediatric intensive care unit (PICU).  Yes, we got a new “fish bowl” room to swim in.  Can I just say, the PICU needs some major funding and if any of you out there reading this know of someone who can help, please contact us.  It is the floor with the most critical children and yet this place is not attractive at all, there are little to no children friendly activities, games, art supplies, movies, etc.  They have “hand-me-down” equipment (because all the other pediatric units have been remodeled and updated) and half the beds don’t work correctly nor do they put kids in a good physical position (it was actually causing Parker to have shallow breathing and setting off the bi-pap machine and he had to get a new bed).  And the families shares a bathroom (that is disgusting) with the rest of the floor and all the public guests; and children are expected to also shower in there, if they can physically shower. 

When we were told we were going back there I just felt so defeated.  We were then told that because Parker uses a bi-pap machine for breathing at night, then he will always go to the PICU from now on and that he should never have been moved down to the regular floor.  I totally lost it…I boo-hoo’ed out in the hall until I am sure I was quite ugly.  The thought of being in these conditions every visit made my heart totally break for Parker.  I am not quite sure how I can make this floor better but I feel like we were put on that floor to see these conditions.  It feels a little like the PICU is not benefiting from funding and I am definitely going to investigate that more. The staff in the PICU is incredible and they should not have to continue to apologize to families for the condition of the rooms and bathroom situation.  I deeply believe that happy children spill over on to the nurses and that happiness can lead to much better healing.  Joy in the PICU is much needed!

Amy, child life specialist, gives a High-5 before going back to PICU
So… late in the night we were moved back to the PICU fish bowl room and they prepped Parker for another spinal tap that took place after midnight.  And they did the spinal tap right in the PICU room with the curtain pulled and the glass door open… while I stood right there in the hall…hearing the whole thing.  Parker proceeded to “help” them prep…yes, he knew what was coming and what he had to do and he completely amazed the medical staff with the terminology that he knew, with how calm he was, and with is humor.  He made them all count to see how long it would take to “put him out” and his goal was to beat his last time of 90 seconds.  This round took him 105 seconds to “go to sleep” and they wrote it really big on the board for him to see when he woke.

Here I stood as they did the spinal tap on the other side of that curtain.
As I stood out in that hall, just 7 feet away from the whole procedure on the other side of that curtain…I cried, I prayed, and I laughed as I shared with the nurse, who was so kind to stand with me, how incredible I believed our Parker to be.  The whole procedure took close to an hour and when the whole thing was done, Parker became our 2:00 a.m. comedy act.  The nurses and docs were totally cracking up at him as he conversed with us all.  And yes, we caught him on video…ENJOY!  Click here to view the YouTube Video of Parker coming off of anesthesia.

Parker’s cerebral spinal fluid (CSF) pressure has improved some; but it was still too high at 34 (remember, it is supposed to be under 20).  But last time it was 42 so this was hopeful news.  The next afternoon, we headed home and we slept hard and sound and long.  Then I resumed with our med routine (because they wouldn't let us in the hospital) and gave him his sub-q infusion of his Hizentra.  Yesterday, we were pretty sluggish.  

Neurology follow-up appointment...look, they have fish too!
Today, we went back to his local neurologist and they felt that his papilledema was still too predominant.  They want us to proceed with pursuing getting special approval to go to Bascom Palmer in Miami where they have specialty neuro ophthalmologists.  They were happy that his rheumatologist/immunologist was able to desensitize him to the Diamox and they want to start re-increasing his Topamax.  So in other words…they are doubling up the meds in hopes to decrease the CSF pressure and avoid shunting.  They shared the same concerns about Parker’s very compromised immune system and the shunt.

Our family is so glad that each of you in our lives and supporting us through all of this. And on a happy note, Logan’s migraines have improved some and he has made up all his missed work for school with only one more day left.  Bring on the summer!  May each of you have a summer full of JOY and LAUGHTER!


Saturday, May 31, 2014

When You’re Stuck in a Fish Bowl…Just Keep Swimming




Day 4 in Pediatric ICU and we think Parker is making progress and may move down to main floor soon.
  For those of you who have not been following on Facebook…Parker’s head pressure continues to progress.  On Tuesday, we made a trip to see his pediatric rheumatologist (because he missed his regular check-up when in the hospital for his spinal taps).   Parker’s Juvenile Arthritis (JA) is actually doing ok.  He has pain; but swelling is minimal.  Yippee!  However, his pseudo tumor’s head pressure and papilledema continues to progress.  There is much concern, that after 2 spinal taps and taking the Topamax, that this approach is not working.  Parker’s neurologist had recommended we see a pediatric neuro ophthalmologist but those are pretty non-existent in Florida.  There is one down in Miami but is not on our health insurance.  So, his ped rheumatologist sent us over to a pediatric ophthalmologist who teams with her and a ped neurosurgeon that same day.

We saw the pediatric ophthalmologist specialist who ran multiple tests and shared her concerns about his vision and she felt with his high CSF pressure he would need a shunt.  She called the neurosurgeon while we were there; and he agreed to see Parker in the morning.  So we stayed in town overnight and saw the neurosurgeon in the morning.

Parker is not an easy child to medically treat.  There are so many medical issues to consider, but I am so grateful that his pediatric rheumatologist/immunologist took the reins on this to steer us in the right direction and to coordinate with Parker’s docs because I honestly didn’t know what to do for him anymore.  The neurosurgeon agreed with our concerns about his multiple spinal taps and increased cerebral spinal fluid.  After much discussion about the complications of putting in a shunt for a child so immune compromised and a little more fragile than most, the decision was to make a very scary and bold move but under medical observation in the pediatric ICU (intensive care unit).

Topamax was obviously not working.  His vision is so precious; we could not continue down the current path.  Parker’s pressure was increasing even more and his head aches and visual intermittent blindness was increasing.  Originally, his neurologist wanted to use Diamox to treat him, but couldn’t because he has both a sulfa allergy and a corn allergy (corn is a binding agent in many meds).  But because the Topamax was not working his team felt we needed to actually try Diamox even with his previous allergic reaction. 

Parker's doc in PICU first met him at  Camp Boggy;
Nice familiar face!
So, Parker was admitted into the pediatric ICU and that night he was giving Diamox via his port because there is no corn in the intravenous form.  The doctors and nurses all stood in his room, with epinephrine shots, benedryl, and crash cart on stand-by, during the 15 minutes it took to infuse the Diamox into his port.  As a mother, this was incredibly intense…as I am sure it was also intense for Parker.  We distracted him with videos and he actually did awesome while it was going in.  I was so hopeful…then about 10 minutes later, he started turning bright red with hives; and he said his throat was feeling thick like something was stuck in it.  Everyone started to ramp up in the room…benedryl was given, then more benedryl was given, then solumedrol was infused.  He was beginning to breathe easier… and everyone started calming (except my beating heart…).  He WAS breathing and that was good but through that very long sleepless night afterwards, I was on pins and needles.  Thankfully the benedryl helped him sleep.  But with the blood pressure cuff going off every five minutes for two hours and then about every 15 minutes the rest of the night…along with many beeps and alarms on the monitors…I did not sleep at all.  We were told by the night doc that this probably meant we were going to have to do the shunt.

All that night, I was on high alert and trying to prepare for my baby to go into surgery.  By morning, the plan had changed.  His rheumy came to discuss not wanting to give up on the Diamox quite yet, despite his reaction.  I have every bit of trust in her but I was absolutely frightened.  I explained to her that I have gone into anaphylaxis many times and that this was a huge concern.  She too was concerned and she brought an allergist into the mix of docs to discuss this.  She explained his complex medical issues in great detail to the allergist and as I listened and processed, it reminded me how incredibly blessed that this doctor is caring for our child and that she totally has his best interest in mind.  Because he didn’t go into full anaphylaxis, they felt that it was worth a try to desensitize him to this drug under continued observation in the ICU.  This was really hard to share with Parker. The doc did a great job firmly explaining what was going to happen; and that they were going to keep him safe.  Then I watched the doc soften, and share so much love with her eyes and gentle caring touch and Parker seemed to understand and trust her fully.  He then told her that he believed in her because she has already saved his life.  It took every ounce in me not to burst into tears as I watch the doc’s eyes well-up.  I know she understood the enormous trust that we had in her.

Prior to starting the desensitization process, the priest came and we prayed and he anointed him with holy oil and put much hope into the process he was about to endure.  So we started again, but instead of pushing the med through his port, they had him drink it (majorly yucky).  Over the next two days, the Diamox dose was slowly increased all day long.  Parker did amazing!  Yes, he still had hives.  Yes, he still itched like crazy.  Yes, he felt absolutely miserable with fatigue and pain…but he could BREATHE.  This was really remarkable.  I know angels surrounded our child.

Now he is at the full dose and he has maintained it for a day, even under these very uncomfortable and itchy conditions.  We were just moved down to the floor he is usually on for a few days to continue to monitor how he does on the full dose.

Our family wants to express our incredibly deep gratitude to everyone who has been following Parker’s journey and encouraging us.  Systemic juvenile arthritis is a disease that needs more attention and funding and these families who endure what we go through are the most resilient individuals we have ever met.  This week was especially emotionally difficult for me because three individuals passed from this disease.  I feel so fortunate to have our smiley, funny, compassionate Parker in our lives.  We must continue to share our story, as hard as it is, so that others may understand and we can get closer to our much needed cure.

We thank all of you for your ongoing love, prayers, and donations.  We had several friends and family make High-$5 donations in Parker’s name and this has really made Parker smile huge.  When you don’t have much control over what is happening to your body, doing something positive and good makes all the difference.  Parker is thrilled to be able to help other families who have children with chronic illness through High-5-Club. (Click here:  www.High-5-Club.org) 

We are thrilled to be able to leave our “Fish Bowl” room in the ICU (pun intended) and  we will “just keep swimming”…And with every stroke, Parker gets a little stronger.  We love you all!