Yes, We are Blooming with HOPE...

Last year, after the JA Conference, I visited the botanical gardens, and I saw this quote that spoke deeply to me…

“A flower does not compare to the flowers around it; it simply blossoms and blooms where it is planted. “

It is very hard not to compare…As parents, we see our children alongside their peers and friends.  We watch them grow together.  As a parent of children who both have juvenile arthritis, we can see differences in our kids' development when "comparing" them with children their same age.  We have seen them grow at different rates both physically and cognitively and in some ways through their social-emotional well being.  It is really difficult to observe the struggles that our children have to endure, but I do believe that it gives them a very unique perspective on live and has caused them to be in full bloom.

This life with JA is where our family was planted…this is where our family will bloom.  And with each new blossom we celebrate our Yeses…

Yes…After 2.5 years of hospital homebound, Parker is back in school.

Yes…Logan’s JA is under control and so are his migraines

Yes…Parker is walking more and using his wheelchair less

Yes…Logan is getting ready for college

Yes…Parker’s vision is restoring

Yes…Logan won the pinewood derby at the St. Louis JA Conference

Yes…Parker has friends who love him for him

Yes…Logan is an amazing guitar player

Yes…Parker is a great photographer

Yes…Michael and I are proud parents whose family has bloomed and grown to include many families impacted by JA.

Our JA family is one big beautiful bouquet.

I am getting so excited about this year’s Juvenile Arthritis Conference...There are many dedicated volunteers and AF staff working hard to make this annual event full of networking, education, and fun.  But as we worked hard this past week planning the schedule, I was reminded that there is nothing like the relationships that are built through these connections.   These people are giving, passionate, loving, and dedicated to working together to support families. 

And I adore the theme "HOPE Grows Here"...As we teamed together, it felt a little like we were tossing the weeds, planting the seeds, and nourishing our souls; so that we could watch our great big JA Family blossom and grow even more together. 

JA has a way of showing us what really matters.  It has taken a long time to truly feel like I have some deep roots, outstretching branches, and a good strong footing.  You see, JA is like that big storm that bashes at one’s heart. The STORM reminds us of our reality…but with each new family I meet and with every story shared, we not only share tears of sadness, but tears full of laughter and joy.  

That balance gives us that strong footing to grow stronger, love deeper, laugh harder.  YES…it is possible to find the joy in life and to choose to celebrate our victories great and small. For it is HOPE that makes it feel like YES is possible …for with each small victory we share we grow a little taller and stronger.

First we have to have HOPE, then we can champion our yeses.

A Balance of Hope and Love

Some days, LOVE takes my breath away…We feel deeply grateful to have love in our lives. Somehow, I feel living with chronic illness makes love oh so much richer.  I have not written much lately, I have been deep in reflection and realization…living life and appreciating its gifts.

Our family lives in constant hope.  Hope that we will see gains and improvement.  In many ways we are constantly pushing forward with hope as our shield.  And when we dare to lower that shield, we still hold hope in our hearts; because with hope, we grow with the possibilities.  If we didn’t believe in possibilities, how could we endure?

And yet, I must acknowledge our reality…everything we do, we plan, we celebrate…we do with much balance; for we know that there is a cost.  I think this is the most remarkable strength that Parker has, but with that balancing act, he has to decide what to say yes to and what he will do to make his “yes” a reality.  Let me give you a for instance…Parker wanted nothing more than to spend time with one of his cousins who was home for the holidays.  But in order to do so, he literally slept all day so that he could see him in the evening.  He has to bank his energy, power up in a sense, so that he can sit up in the evening to play games at a table.  He knows his capacity and he must allow for it accordingly. 

Much has happened since I last updated and once again, we are processing our choices and next steps.  The pseudo tumor and papilledema is still there but improved and holding stable.  He is still getting treatment.  We are hopeful because his vision is better. 

JA has been unkind to Parker's mouth...he had the last of 8 baby teeth extracted.  Now we wait for them to start coming in before going back to the orthodontist.  I am a little afraid to see the next bill with invisaline.

After winter break, we need to set up an appointment with the orthopedic doc to talk about what we are going to do about Parker’s left ankle.  And recently, his pulmonology test showed that he needs a bit more pressure to help him breathe at night but that was easily amended on his bi-pap machine.  Finally, he is going to need to start gait training in physical therapy.  However, now that he is “aware” that his walking is out of whack, he is paying more attention to walking.

On most days, Parker is walking better and his doc would be so happy to see him swinging his arms in the halls of his school.  See he had to learn to “walk correctly”.  He is making school about 50-60% of the week and we are so grateful that his teachers are working with him.  This is the hugest success ever for him and incredibly draining.  He is beginning to make new friends at school.  For Michael and I, this is the most joyful thing we have experienced in a very long time.  It was so incredibly hard to see his friends continue on to the 10^th grade and for him to re-enter school after taking a year off for his health and go back into the 9^th. 

The coolest thing happened last week.  Parker had one of his friends over for a few of hours.  That alone was the highlight of his break…but when the mom came to pick him up, she looked at Parker and noticed how much shorter he was than her son.  She asked if they were in the same grade.  Of course, they were not anymore because his friend went on to 10^th and he was in 9^th…I said it was due to medical that he was held back  but they are the same age, thinking she must know about Parker’s JA…but she looked confused.  I said, oh, I am sure your son can catch you up to speed when you get home.  But in that moment, I was completely overjoyed…I wanted to yell…”Do you know you have the coolest son ever!  Do you know that he is the definition of a true friend?  Do you know that he sees my son for the cool kid that he is and the fact that you don’t even know that my son has major health issues is the best gift I could have received this year?!”  I knew that this friend of Parker’s was pretty amazing…but I love this mom for raising her boy to see “people”.

So we did try the growth hormone for Parker.  It was a daily shot and with each day he injected it, the worse and worse his JA got.  He got rashes, swelling, fever, and intense pain.  By day six, it was so incredible that we were advised to stop it.  Many asked if he really needed it anyway…well, yes…yes he does…his labs show he is not making growth hormone and he is not going into puberty.  His levels are whacked.  So yes, he needs it.  We never make medication decisions lightly.  We weigh the pros and cons and then try to make the best choices with much prayer for where he is at in this moment in time.  We have suspended the growth hormone and had to take Parker in for an infusion and even that was tricky because we didn’t want to make his pseudo tumor and papilledema worsen.  Also, with this last flare, his adrenal glands went wacky again.  So, once again, we had to increase the hydrocortisone.  I am happy to report, that after 3 weeks of intense pain, Parker seems to be on the down-side of the flare.  Now he seems to have picked up a bit of a cold though…he got his infusion of his immunoglobulin today and so we are hoping that helps. 

The pain management doc didn’t really like this last flare at all.  He is pushing us a bit to proceed with the nerve ablations that we have been putting off in his neck.  We decided to wait because Parker needed a true “winter break” with NO medical appointments.  The doc also talked to us about a new procedure that he really thinks will help Parker.  It involves a remote control battery that can be up to 3 feet away that Parker would use when in pain.  We are still processing that option, however, Parker is quite intrigued.

We had special guests for Christmas this year.  Michael’s cousin and her husband came to Naples for the month of December, so we had them over for Christmas. This was our first time meeting.  It was so fun to listen to them reminiscing about their childhood.  She even made some of grandma’s cookies.  It was all very sweet to witness.  But the most incredible thing happened…her husband shared that he works for a very large pharmaceutical company as a biochemical researcher.  Here I was meeting this delightful man who was super sweet AND an incredible wealth of information.  We had quite the conversation about biologic drugs, immunology and autoimmune diseases.  I got such an education and he knew all the drugs that Parker has been on and how they work.  It was such a great discussion because this is so hard to explain to others who are not immersed in this vocabulary.  I was so thankful to have time with him and his brilliant mind.  He also talked quite a bit to Logan about going into medicine.  It was one of those moments in time when I felt like all was right…in balance…and we were all exactly where we were supposed to be.

This life we lead is with much balance, hope, and prayer.  We never know what is around the corner.  We can only live in today’s moments and be joyful for the gift of love that surrounds us.

The Life of Parker: VIDEO Blog

CHECK OUT THE VIDEO THAT PARKER MADE TO TRY AND EXPLAIN WHAT HE GOES THROUGH WITH SYSTEMIC ON-SET JUVENILE ARTHRITIS

Click below on video picture or on this link: The Life of Parker

Logan's Lovin' the Good Life ~By Logan

Everybody wants a good life. This may sound obvious, but it still renders true. So what exactly constitutes what is, and is not considered a good life? Well, this is a very subjective topic, which will surely have many different answers; I think that it all comes down to happiness. In order to have a good life, in my opinion, one must be happy.

            
Of all things, I have found happiness in helping others. When I was in seventh grade, my younger brother was diagnosed with systemic onset juvenile rheumatoid arthritis, a form of arthritis that not only attacks one’s joints, but also their internal organs. When I first learned about the severity of his disease, I was at a loss for words, but from that moment on I knew what I wanted to do; I wanted to become a pediatric rheumatologist. I immediately put this plan into action, by starting to volunteer at the Arthritis Foundation. Though the work may not have seemed like a lot to most, I knew that I was helping the Foundation in a large way. Soon they assigned me a larger task; they saw the leader in me, and asked me to organize an event for families to come together and network. I gladly accepted this task, and when I saw the smiles of the people attending the event I was ecstatic. Knowing that I could help people, and bring them joy made me the happiest person on the planet.

If we fast-forward a few years to the present, I am still helping people, but now on a national level. The arthritis foundation has made me a committee member on the young adult committee for the National Juvenile Arthritis Conference in 2015. Now I am bringing people together from across the country to network and advocate for juvenile arthritis. I feel like I am truly making a difference now, and changing people’s lives, for the better, along the way.

My undergraduate experience, however, will not prepare me for ‘the good life’ because I am already living that. On the other hand, college will prepare me for a better life, by helping me reach my ultimate goal of going into pediatric rheumatology. Once I become a pediatric rheumatologist, I will have a chance to eliminate the pain that hundreds of children suffer from on a daily basis, and that will make me the happiest person on the planet.           

Challenges, By Parker

One challenge I think I might face in reaching my life goals is surgery. My goal in life is to “make my arthritis hurt less”.  So, one step I might have to take to get there is having ankle surgery. My left ankle was the first part of my body that began to show signs of rheumatoid arthritis. My ankle has been through a lot and I have tried many things to fix it. First, I got better shoes (Asics). Then, I got ankle splints. And now I have custom shoe orthotics. My left ankle is so bad now that when I stand, my foot turns in and now my ankle nearly touches the ground. While “surgery” is a challenge that I have to face, it is also a solution.

Another challenge I might face on my way to reaching my goal is friends. At the time I’m writing this my social life isn’t the greatest, but I fear it will get worse soon if I don’t get a handle on my arthritis. I am scared to go to school in my wheelchair because what people will think of me. I am scared to miss work because people always say I’m lucky; but they don’t get that I still have to make up all the work by myself without a teacher. Worst of all, I’m scared of being absent because when I come back kids say mean things like “you are in this class still” or “why are you here”. And if they don’t do that, they say mean things when I sit down like “you don’t belong here” or “get out of my seat”.  That kind of stuff really gets to me, because I just want to make friends. And what really sucks is that I can’t do anything about this.

The third and final thing I will talk about is myself. Yes I said myself. I think I’m my own biggest challenge/obstacle. Every day I wake up not wanting to go on, not wanting to fight the arthritis any more. Every single day I am in pain. Every day I’m fatigued and just don’t want to do anything. But I have one solution, one reason to keep on fighting, and that is my family. I have an amazing brother who cares about me and loves me. I have an amazing dad who plays with me and 
watches TV with me. And I have the most wonderful mom in the world. My mom comes to every doctor’s appointment, every surgery, every infusion. My awesome mom even learned to use my port, give me shots, and even set up my infusion so that I can do it at home instead of always going to the hospital. Without them I don’t know what I’d do. I love my family with all of my heart, ALL OF IT.

Mamma Bear

Mama Bear had to take some big deep breaths this entire week to stay the calm bear in the bunch.  Whoa!  What a wild week we had.  Between finding out Parker was bullied at school his whole first week, to him having trouble breathing and going to the ER, to Parker being admitted and then trying to go to a few classes to show he is truly trying his hardest (because we desperately don’t want him kicked out of traditional school)…and finally, then ending the week with Logan going to the ER with a “false alarm” due to something he ate…I was so very very ready for a three day Labor Day weekend, even though I barely got to “work” this last week and have to make up hours.

People tell us all the time:  “things will get better” or “hang in there…” or “I can’t believe all you guys go through”…  I am here to tell you that when you go through has many challenges as we often do, you get really good at problem solving…but sometimes I wish we didn't have to do so much of it.  This week we had to face so many of our fears!

If you have been keeping up on the blog, you know that Parker had a great time at Camp Boggy Creek and an amazing first week of school.  We truly were a family full of joy and felt so blessed to have such a smooth transition back to school after 3 years of him being out.  When I picked Parker up at school on Friday, Parker informed me, with all the bravery he could muster, that he has been bullied all week.  He would not tell me by whom, because he didn’t want to be a tattle-teller.  He is trying so hard to just fit in and not stand out, but this bully found him anyway and he was so cruel.  He used nasty vulgar language, insulted his intelligence because he was “back in 9^th grade again”, and insulted “his mother” in such a mean way that Parker could only tell me through tears because he was so very embarrassed.  Yes, the Mama Bear in me wanted to cuddle him and also stand on my hind legs and attack. 

I called the school and addressed it with the principal.  I assured her that this student had to be a new, as children at this school never spoke this way…and especially not in the classrooms on a daily basis.  I gave her as much detail as I could, given what Parker told me, and that this kid was in multiple classes with Parker.  I also said that I felt like this child needed support, because for him to behave this way, he clearly needed help.  She assured me she would be talking to her teachers and dealing with this.  I also assured her that I would be “coaching” Parker on how to deal with this too.  The good news is, this kid did need help and because I alerted her he is now getting the support he needs to be successful.

On Sunday evening Parker was having trouble breathing.  He said it hurt to take breaths.  So, when bedtime rolled around, he slept with me, with his bi-pap machine on, and I pretty much was awake most of the night to make sure he was breathing.  When he woke, breathing hurt more.  So, we called the pulmonologist and took him to the ER of the hospital where the pulmonologist works.  Besides taking an x-ray of his lungs and almost giving him Tylenol (he is allergic), they pretty much did nothing else for him in the ER except cause us complete misery.  They didn’t even hook him up to monitors; even though I told them why I brought him in; and that he has a history of pleurisy and pericardial effusions.  They did run some routine labs and it did show elevated CRP (an inflammation marker).  As evening approached, the resident doc came in to tell us that they felt that he was in a flare and that we should consult rheumatology.  So, I suggested we leave and take him to the hospital where his pediatric rheumatologist is…He said he felt that would be ok and he left and I went outside to call his doc to see how to proceed.  

Unfortunately, I could not get through on the phone, so I went back in to the ER to all hell breaking loose.  There were about seven staff outside Parker’s ER room and they stopped me to tell me that they wanted to admit him.  The attending doc then went on to tell me that my husband and Parker were quite upset but she felt that this was best.  She went on to say that if we left we would be going against medical advice and they would report us.

For a moment, I could feel the room spin…surely this ER doc wasn't insisting that we get treatment from the very pediatric rheumatologist we had left many years prior?  And why were all these people in front of Parker’s room.  As I look around I could see stern straight faces on all of them, several with their arms crossed, all standing firm, and all looking at me.  I felt a panic beat in my heart, I started to sweat, and I knew I had to stay calm and help them see this from our perspective and surely all would be ok. 

So I took a huge deep breath, and looked right into the attending doc’s eyes and then over to the charge nurse and began my story.  I explained that when Parker was 8, it was very hard to get help for him.  For over a year and a half we took him to specialists before we finally got a diagnosis of JA for him.  Then we started seeking treatment and medical care at this very hospital with the pediatric rheumatologist.  Months and months went by and Parker continued to worsen.  Clearly what was being done was not working.  Parker began running daily fevers that came and went and his rashes were increasing and he was so very swollen it was completely visible.  But back then, as it still is now, seeing him in pain was the very worst thing.  Parker was bad but back then, we didn't have a follow-up with that doc for 4 months.  I called and called and called…I kept getting excuses from the nurse practitioner as to why the doc hadn't called back and she kept telling me her hands were tied, she couldn't bring him in unless the doc said.  This went on for 8 weeks as Parker continued to get more severe.  This doctor would not call us back or allow us to bring him in…he wouldn't even give our primary doctor a call back.  Finally, our primary doctor said we could not wait any longer; we must get him to a doctor who could help him.  So, she mailed over 100 pages of records to the doctor he now sees.  We were seen the very next day.  We then were on a fast track for treatment and soon Parker was hospitalized.  These were very difficult times and I explained to this attending ER doc that I was sorry that my husband was so angry and that Parker was crying, but that I felt that they had every right to be upset.  Because see, we have been told…on multiple occasions…that if Parker would have gotten better and quicker treatment in the beginning, then he would likely not be as severe as he is now.  The nurse said to me, “please don’t apologize”.  The attending doc, with her straight face, said she still wanted him admitted here and under rheumatology.  I asked why he couldn't be admitted under the pulmonologist and she said he doesn't admit.  I then asked why I couldn't take him up to his regular doc, who knows him best and works with all his docs.  She said because he needs observation.  I said, “Then we could transport him.”  She said, no, because they have docs here who could treat him.  I asked that he not be seen by the doc we left.  She said she didn't know if that was possible.  I then continued with that the resident doc said it would be ok if we left, but she persisted that if we did leave then we would be reported for going against medical advice…that is when I glanced over, because I saw her eyes drift to the people who looked like administration in suits and then I saw that the “red light” was on outside our room…indicating the alarm would alert them if we were to leave.  And much like a caged animal, I felt trapped.

I asked who was on-call.  As I silently prayed that it wouldn't be the doc that would totally stress out Parker to come face-to-face with… It was the other new rheumatologist.  Finally, I agreed we would stay if they would only allow the new doc to see and treat Parker and I didn't want the other doc even seeing his records.  They agreed.

So, finally, after a very long day in the ER, I went into the room to explain to Michael and Parker what happened in the hall and what was going to occur.  I could see the anger on Papa Bear’s face.  I could see the fright on my Baby Bear’s face…  I had Michael leave to get dinner for all of us, since we had been in the ER all day, but also to just get out and chill down.

Echocardiogram

Soon after we all ate, we finally went up to the room.  We had been assigned a floor doc as a case manager and it was obvious nothing more was going to happen that night.  So, Michael went home.  Tests/scans/labs were all done the next day.  What it came down to is Parker was in a flare, likely brought on by an unidentified virus and his rib cage and surrounding muscles were the most inflamed.  He was given morphine on the floor; his lungs and heart were ok; and by that evening we were home.  All of the tests that were done on the floor could have easily been done in the ER the day prior. 

My niece and nephew on a hall
picture as we left the hospital

Wednesday, Parker slept the entire day.  Thursday we went to the Pain Management doc and came up with a plan with his pediatric rheumy.  I took him to school for one class and he cried and didn’t want to be there, due to the pain…I left him crying (along with the admin and nurse)…one class, just one class… and then I just went to my car and cried my eyes out.  I cried for my son who must continue to live with pain, who I must push to keep moving, even though it hurts, because it always hurts…and he has to live with that pain…and then I said my prayer for him…took some deep breaths…and drove to work.  Because life goes on…

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