JA Lessons Learned

Being a mother is truly a gift.  This statement rings true for many…however, being a mother of a child with a chronic life-threatening illness is a gift that awards me with such deep teachings and gratitude for life and I want to share in my lessons learned.

I enjoy teaching so very much.  During my 10 years in a preschool classroom, teaching young ones with multiple disabilities, I always came home counting my blessings.  I was so grateful that I had two healthy beautiful boys, especially since it was uncertain I could even have children.  Both boys are my little miracles. 

Later, when I started working at that University, I was so wide-eyed and excited that I would be continuing my career as a teacher of teachers.  Daily, I marveled at what amazing teachers exist in this world…yet it was always the children that I learned the most from.  Recently, I have been doing much work coaching in classrooms.  There are so many young children with difficulties and those difficulties are quite the challenge for many adults.  I have been blessed with understanding the perspective of little ones and helping adults see things from their points of view.  But I am just a lens of sorts, bringing clarity …assisting adults to see things that were always there to see…

As an educator, teaching comes naturally …lessons are what we plan…  but as a mother of two children with juvenile arthritis, one with chronic serious issues, I have learned much deeper lessons.  These lessons are certainly not chosen and I most definitely didn’t look for them, but now I can clearly see them.  When Parker was diagnosed, I asked many questions, read many medical journals and even text books (yes, I ordered rheumatology text books…it’s what an “educator” does).  I researched so much that I started to re-read what I had already read…looking for answers and trying to understand as much as I could.  And yes, I learned much…much about treatment, disease, options…  Then, of course, there were some things I read that made me cry to the point of exhaustion.  And on the flip side, I even read about “cures” that made me laugh (…like, did you know gin soaked raisins can cure rheumatoid arthritis and at the car dealership you can get joint juice to ease the pain…); sometimes you have to laugh…

But the real lessons come with experiences.  Some lessons are painful.  JA has taught me who my real friends are and are not…and that in every walk of life there are mean people… and even when you try to do “right”, it can turn very very wrong.  But JA has also taught me that mean people might be processing tough stuff  and to love them through it…and what might feel wrong to some, might be very right for us.  

And my JA lens has shown me and my entire family that prayers full of love, acts filled with kindness, and joyful simplicity are amazing and to receive such gifts is truly life’s lessons.

I know that other mothers and fathers and siblings of children with chronic illness endure incredibly difficult journeys too.  I watch it every single day…  countless hours of worry, reveals faith… endless treatments, needle sticks, procedures, bring hope… pain, shows strength… mysteries, give patience… physical barriers and road blocks show us alternate paths…  but the greatest lesson of all is LOVE. 

I can see the love in doctors’ and nurses’ eyes as they tell us things we certainly don’t want to hear.  I also see love in their eyes when they celebrate the simplest of accomplishments.  I feel love from our friends and family with their notes, encouragement, acts of kindness, and prayers.  But the love between Michael, Logan, Parker and I …as we simply sit together, not saying a word, just being together…well that is true deep love and a lesson I gladly learn.

We are so grateful to Armanis Restaurant at the Tampa Hyatt for doing a wine tree fundraiser for Parker's Purple Playas.  

The CURE for Chronic Illnesses...by Logan Lentini

Today, Logan posted this on Facebook and I think it is worthy of a blog post...

Incurable, it’s a word that some of us are far too familiar with, and quite frankly I am tired of hearing it. Obviously there are countless diseases that are incurable; diabetes, arthritis, lupus, fibromyalgia, cystic fibrosis, and many cancers, currently have no cure, just to name a few. For many chronic illnesses, symptoms are manageable, but in other cases the symptoms can be lethal. 

When health professionals verbalize that a disease is incurable it can do one of two things. From a patient’s perspective, hearing that word can potentially eliminate all aspects of normalcy from their life. To a non-patient, hearing that something is incurable can stir up a whirlwind of emotions, especially if the non-patient personally knows a patient battling chronic illness. However, saying that chronic illnesses are incurable is simply false. Though there may not currently be a cure for a specific disease, that doesn’t mean that there is no cure at all. 

This is amazing news; if you think about it, there is, in theory, a cure for every chronic illness known to man. All it takes for a cure to be discovered is the right person conducting the right research. The cure could lie in alternative medicine, or genetics, or somewhere else, but there is a cure. We are on the right track as a society to finding these cures too; many chronic illnesses are now manageable through pharmaceuticals, and various other methods. Knowing how to manage the symptoms of chronic illnesses is the first step to understanding them on a cellular level, which in turn will eventually lead to the discovery of a cure. 

Now I’m not saying that every chronic illness will have a known cure over night, or even over the next ten years, but I do believe that in this century we will find the answers that we are looking for. There is a solution to every problem, and there are cures to chronic illnesses. As long as we stay hopeful, and advocate for ourselves, the right person will eventually come to the table and make the discovery that we have been waiting for; the discovery that will change the world.

Difficult Decisions…

For many years I have felt a bit obsessed because my constant prayer has been for Parker’s healing…But I am not quite sure when that prayer shifted to: I just want what is best for him and for him to experience joy in his life.  It was probably a little more than a year ago.  I think it shifted when I tried to begin understanding what his precious life’s purpose may be. 

The struggles that this child has faced have been plenty and as a mom, each struggle is incredibly difficult to witness.  However, I will never give up on him; I will forever be his biggest cheerleader; and I will always stand beside him with pride and love.  I know some feel that we have made some wrong choices and by being public with our story, we have made ourselves vulnerable to judgement.  But what is right for him and our family is simply that, right for us.

The decisions made are carefully weighed given all of our circumstances and options.  Ultimately, we have to trust and have faith that we are on the right path for us at this point in time. 

So, in trying to decide what to do about school, we did indeed consider all our options.  For goodness sake, we have already tried hospital homebound, virtual school, traditional school, charter school, part-time school, and combinations of all these.  We know our legal rights; we know his IEP gives him the right to a least restrictive and appropriate free education; we know that we could continue to pursue…but what we also know is that Parker is fighting for his life and let me tell you…it is completely and utterly heart wrenching for us and totally exhausting for him.

We took much care in explaining to Parker all of his educational options.  What is most important to him is one, friendships and two, getting better/stronger.  We met with the school and they have agreed to allow Parker to continue to go to lunch with his friends at school, to attend events, and to volunteer.  He will also continue with one of the clubs he has been involved with and be a part of the community.  In addition, he is going to pursue his GED and then go to our community college.  This will allow him to focus on his medical needs and not have as much educational stress.

This decision wasn’t easy for him.  In addition to thinking about his education, he is also trying to deal with many medical decisions.  He will be getting his foot fused in about two weeks and once we over this first hurdle, then we will focus on the rest.  So, I ask that you simply pray and continue to shower our sweet son with love and we will continue to hope.

And to all who have reached out, we are so very grateful you are part of our lives.

Words are Hard to Come By…

I have been searching for the right words to update because we have been dealing with a ton.  And quite frankly, it gets harder and harder to share difficult news with people who we know care and love us dearly.  I want to desperately share only amazingly good news…unfortunately we have been bashed with more challenges.

Since my last update, Parker was discharged a day early from the hospital, at my request, so that we could check him into school on the final day of FTE week.  This is an important week in schools, because if children are not present at least one day that week, then the school doesn’t get their funding for that child.  And because Parker has an IEP, his school gets more money to support him.  We know that Parker requires more supports and work, so I really wanted to help the school out by getting him there.

As we left the hospital, we got his final test results.  Parker has been receiving replacement therapy because he does not make cortisol and due to this his adrenal system tries to shut down.  Well, even with replacement therapy, his levels were still low.  We were informed that I probably shouldn’t have transported him to the hospital last emergency.  This last time was a really close call because his adrenal system shut down and we could have lost him.  So, now his daily replacement cortisone has been doubled and we have been given an “emergency shot” to carry to save his life.  Now I carry an epi-shot and a cortisol shot for him.

We also got his MIR results.  His SI joints are inflamed and there is much synovial fluid around them with the left being worse than the right.  This would explain why he has had increased pain in his hips, groin, and lower back.  And apparently there could be a connection with the SI joint issues and his feet issues.  His doc is really confused by the SI joints issue.  This is not a common area of involvement with systemic JA.  She has been thinking on this and has asked us to give her until next week as to a plan of treatment regarding this newest discovery.

I cannot imagine how hard all of this constant bad news is on our son.  And I have to marvel, that despite all of his incredibly difficult health battles that he continues to persist.  And although he didn’t make it full days to school this past week, he went every single day.  He went because he is desperately trying to have some normalcy in his life.  He went because he is part of a community and is proud that he has achieved something that is important to him.  He went because this is the place where he is around his friends who encourage and support him and make him laugh and smile.  He went because to him, school is his safe place, a place where his is accepted, and a place that fills him with hope for the future.  And each day that he climbed into the car at the end of the day, he did so feeling accomplished.

School has been his motivator.  He sets goals around school.  And although the make-up work has felt overwhelming, he has been mapping out a plan to accomplish it.  He even has a dry erase calendar to write out tasks in chunks.  He has been emailing his teachers, checking the online system, and prioritizing tasks…determined to succeed this year. 

Michael and I have marveled at his emotional growth this year and how much he has taken initiative.  One prime example of this is when he was added onto a group presentation this week.  The kids he was grouped with at the last minute never sent him the slides he was to present on.  So Parker took it upon himself to create a whole new presentation in PowerPoint from scratch to present on.  Now this is impressive…especially given how much make-up work is on his plate.

Friday was the last day of the grading period.  So, of course, we knew he would likely have to get incompletes.  Since the start of school, he has had lots going on medically, has missed days of school and has had two hospital stays.  We have worked hard to try to schedule all his medical appointments at the end of the day and when scheduling his upcoming surgery, we even went in and met with the principal to try and decide when to schedule the surgery so that it would have the least impact on school. 

For a kid that his endured incredible amounts of difficulties, you can imagine our devastation when we were told that he could no longer attend his school because this school is too rigorous and he is absent too much.  The depression has officially set in…for all three of us.  We have been processing, trying to think of our next steps, trying to figure out how to best meet his educational and medical needs… and we will figure out a plan…but for now, we ask that you just support and love us and pray for our strength.

Hoping Ilaris Will be Parker’s Miracle…

Well, the mean JA beast is continuing to attack.  As Parker shared in his last blog, the biggest sign that the rilonacept (the study biologic he has been on for 3 years) is no longer working well was because his knee blew up huge.  Since he wrote the last blog, he has continued to have low grade fevers, rashes, swelling, and increase pain.  We have made the difficult decision to move on to the next biologic, Ilaris.  It too is an IL-1 drug and for us that is promising.  But the scary part is, it is the last one to try.

Yesterday, Parker was admitted into the hospital to try to control his pain and swelling a little better but also to run tests.  Labs were taken last night and this morning.  Ultrasounds of his joints will happen soon and later today he is scheduled for a 4 hour MRI of cervical, thoracic, and lumbar spine along with SI joints and hips/pelvis with contrast.  The new doc in partnership with his pediatric rheumatologist is experienced with ultrasounds in pediatrics and joint injections and will be doing those tests.

While working on getting the insurance to process the Ilaris, Novartis Pharmaceutical has agreed to provide the first dose for free and it is being shipped here.  This is pretty incredible news because as the doc says, “this is like liquid gold at $30,000 a shot”.  We will cherish it and hope it does a fabulous job at helping Parker.  I literally just got news, thank God, that the insurance has approved the Ilaris for two years.  Incredible news.

And today I met the office manager that processes all these medical needs.  She came to Parker’s room herself to deliver the good news of a two year approval.  What a beautiful angel on earth.  There are so many people working behind the scenes for our son and I am eternally grateful.

My prayers have been constant.  I am praying, of course, for our son’s health to be restored.  I am also praying for his school to remain constant in supporting him.  I am most concerned about school and I know we shouldn’t worry because his health is most important, but I firmly believe that school is part of his health…his social emotional health…his opportunity to feel part of his community; his chance to connect with friends; and of course an education for his future.   This school year started off great and still to this day he has not used his wheelchair at school.  He has pushed through some tough days with remarkable strength and drive.  I also have been watching him grow in his relationships and his outlook of his future has been more optimistic.  These are all huge blessings.  So of course, I hope for this to remain possible.

I will write more later once we have more results.  We thank all of you for your support and care.

Much love.

Here We Go Again...by Parker

So these last couples of weeks haven’t exactly been the greatest. My arthritis has been at war with my body. I have started getting flares again and that’s pretty weird considering how I was feeling before this flare. Things were really good, I was making it to school almost every day and I wasn’t even using my wheelchair.

But then, all of the sudden, it was like a bomb got set off in my body and that bomb hurt. First it was my lower back, shoulders, and neck that started hurting; so I switched to a rolling backpack. The next thing I knew was my ankles and feet were being attacked. If you look at the picture to the left and look at the red circle, you would probably guess that bump is my ankle. Guess what, it’s not.  That is actually the bone in the arch of my foot trying to push out. This became a problem because I’ve been wearing braces since the surgery.  When I walk, that bone hits the hard plastic and very badly hurts.

In addition to all this, I started having daily fevers again. Now I know that fevers are a symptom of systemic JA but I take a drug called Rilonacept and that drug is supposed to do 2 major things for me. Those 2 things are to keep my pain and swelling at bay and to suppress fevers. So when all this stuff started happening, we were pretty concerned.   

Then, another pretty weird thing happened. There are 2 joints on my body that don’t swell too bad, and those are my elbows and knees. And guess what, my knee got huge this week. Just look at the picture to the right. I mean really, if I didn’t know any better I’d think that was a thigh. The next day I woke up and my knee was still pretty huge.  We called my doctor and she said to go to my orthopedic surgeon to see if he would drain it. So we went to go see my surgeon and he wanted to take some x-rays of the knee before the appointment.  Since  we were there, he wanted to also get some x-rays of my feet and ankles. Well by the time we got up to his office and ready to see him, my knee had gone back down quite a bit. But he still wanted to look at my surgical site x-rays, especially my feet x-rays. And this is where everything went down hill.

If you look at the x-ray to the left, in the red circle you can see what my foot looks like with the cadaver bone fusing with my bone. And it looks pretty good. But if you look at the x-ray to the right, in the red circle you can see where the cadaver bone was located. And well, it’s not there, it’s gone. It was basically rejected by my body and was completely absorbed.

Now my bone has a gap where the surgeon had severed it during the surgery.  And all this time it has felt like the bone is trying to escape my body by pushing out the side of my foot because it is actually pushing out and my arch is completely collapsed again.  As you can imagine, we decided that it’s time to switch to a new drug called Ilaris, as soon as insurance approves it.

So you may be asking, what does this mean? Well, it basically means that the surgery didn’t work in my left foot. And on November 18^th 2015, I go back into surgery but this time to permanently fuse my foot. This was a lot for me to take in and I’m doing the best I can to stay positive. So, I want all of you to remember that you’re never fully dressed without a smile.

So Close to Death and Life Wins

We have always carried in our hearts the knowledge that systemic JA is very complex and can be dangerous.  Sometimes this weight is too much to bare. So, as parents, Michael and I focus hard on the things in our lives that we can celebrate.  Our two most joyful celebrations we cherish are our two boys, Logan and Parker.  We have been so very blessed with all they bring to our lives.  As most parents, we wouldn’t trade them for anything in the whole wide world.  And because we adore them with every ounce of our beings, we also can feel such devastation when medical issues arise.

During the final week of school, we were painfully reminded how very fragile Parker’s health can be.  We know this to be true with our “minds”, but oh how we pray with our hearts for protection from this fact. 

For several months, Parker has had heart issues and is seeing a new pediatric cardiologist.  The cardiologist, and several of his other docs, feel that his heart issues are stemming from his autonomic system dysfuctioning.  This was firmly confirmed during his last hospital stay by the team of docs that surrounded the care of our dear child.  What makes this so incredible is that another young lady, whom we are very close to, is also experiencing autonomic dysfunction and it has been much more severe and she has been hospitalized for nearly 4 months (at two prestigious hospitals).  Her mom and I are close and much of the initial onset, lab results, and treatments were all the same for Parker.  Seeing her struggle is heart wrenching and makes us wonder “what’s to come…”.

Although this has complicated things for Parker, this is NOT what landed Parker in the hospital this month.  Very suddenly, Parker got incredibly sick with nausea and an uncontrollable gastro-intestinal virus.  Being nearly 16, I am sure he wants some privacy around this; so I will spare many of the details, but he did pass out and somehow made it back to his room after coming to.  I took his temp and he was running 104.9 degrees F; and he was completely delirious.  After calling his pediatric rheumatologist and leaving a message, I started packing because I already knew I was going to have to take him to the hospital.

Parker is on several immune suppressant drugs and one of them is a biologic, rilonacept (arcylist), that is specifically used for systemic JA because it is to keep fevers down.  In fact, it is also used for something called “periodic fever syndrome”.  One of its main purposes of this shot is fever suppression. We were advised, when he started the study on this drug, that if he ever ran more than 101 fever that we were to take him to the ER. 

After packing, I called the doc’s office back and by that time, Parker could hardly be awakened and was even more delirious.  I somehow got him into the wheelchair and into the car.  As we drove to the hospital, he was completely out of it and when we arrived he was starting to turn blue.  I was completely running through motions…pulling up to the ER entrance, pulling him into his wheel chair with the valet guy’s help, handing over my keys and rushing inside. 

A young man in the waiting room looked at him and said, “Mam, is he ok?” as Parker was sweating horribly, blue, and slumped over.  All I could squeak out was “yes, thank-you”…knowing full well he was not.  As they were handing me the form to fill out, a nurse rounded the corner and just took him from me and said follow me, pushing his wheelchair into triage.  She put the pulse ox on him and his oxygen was low.  And again she pushed him in his chair and said follow me.  As she entered the ER room, I was only steps behind her…and in front of me about 8 people swarmed the room leaving me to stand in the backdrop staring at my blue child, praying, and not knowing what to do.  They were hooking him up to all kinds of things, starting his port with IV bags AND digging for second access point to start another IV line, in his collapsed veins.  After 4 pokes and a second nurse trying, they finally got the second line started in his hand.  Parker never woke.

The lead doc asked me all kinds of questions and thank God I have all his diagnoses, surgeries, docs, treatments, and allergies all typed out on a list in my purse because I honestly was in shock.  All I could think to do was to give him the rheumatologist’s cell number …because I knew she would be able to explain his complexity and what labs to run.  There is something about seeing your child laying lifelessly on a gurney and his clothes being cut off him and him never waking up through all this. In that moment, I was so incredibly thankful that Parker’s sweet, caring, brilliant doctor had actually given me her cell number because even during this I felt like I was intruding on her personal life but I knew this was realllllly bad; and she held many key pieces of information that the ER staff needed.  She had saved his life before.

I was in the moment I have feared most with this disease…he was literally near death…I think closer than he has ever been.  As I type this I can’t stop my tears…I have literally dreaded sharing this in writing because typing this out makes it all too real and I am reliving it.  So I apologize to the many who don’t use Facebook and you are just now finding out that he was admitted into the pediatric ICU on June 3.

As they pushed multiple bags of multiple medications through him, and they finally seemed to begin stabilizing him and calming themselves, I called Michael.  Once again, here we were in crisis and he was out of town.  Of course, he drove straight to the hospital.  I then called Logan, as I knew he came home to an empty house.  I let him know that Parker was in good hands and to pray. 

See, Parker’s body couldn’t handle getting this virus on top of his systemic JA and his immune deficiency. Remember, he was already in autonomic dysfunction (dysautonomia has several forms) and on top of all this, his body was going into adrenal crisis.  Just that, on its own, is dangerous.  I didn’t realize until later in the PICU that this was also going on.  

That night was a very long sleepless night.  I couldn’t sleep, I could only stare at my child and the monitors and pray.  They had to move and shift him many times in that bed and he never ever woke.  I kept telling myself his body is healing…that is all his body can do right now…it is healing…I could not lose my child.  Not now…

Many specialists surrounded our son’s care that next day:  neurology, cardiology, endocrinology, gastrology, pulmonology, and pediatric critical chronic complex care specialists (who we actually have been trying to transfer him to for the past month because his primary doctor felt he is too complex for her to continue to treat him).    It was very surreal…many of these docs were partners to the docs he actually sees at the hospital and to hear their take on all this just made me take slower and deeper breaths.

The first two days in the hospital were quite a blur for me…for Parker they don’t even exist in his memory.  He can’t remember anything.  But I think that is probably a huge blessing for him.  With each day that followed there were more and more labs and tests. On the 5^th and final day, he had an endoscopy that showed gastritis (which he has had for years now) and the doc shared pictures of where his pills hit the atrium wall of the stomach and there are tons of burn marks and blisters. So his meds have been adjusted some. They also took 5 biopsies that all came back negative.  Best news ever.

Parker was so thrilled to come home.  Due to all this, it has impacted school and he still has one final exam to make up but amazingly he passed to 10^th grade.  This is truly a gift and was so needed after all he endured.  He had follow-up appointments with almost all his docs and mostly things are looking better.  He is our miracle kid.  He still has to still see a specialist for the dysautonomia.  We are setting that up, but in the meantime, the cardiologist has ordered weekly infusions of sodium chloride at home…this is one of the least invasion treatments for this, so we are proceeding with that.

For now, we are putting off his 2 minor surgeries but are still trying to get them done for prior to school starting.  In the meantime, the doc will do an MRI and get it all lined up for the neck nerve ablations and the nerve stimulator trial in his spine.  Parker still wants to have them done.  I just can’t imagine living in so much daily pain.

Parker is now enjoying the start of summer, resting a lot during the day, counting down the days for Camp Boggy Creek and anticipating the National Juvenile Arthritis Conference where he is an Ambassador of Hope.  Last night he went to the AF awards ceremony where he and Logan got an award for being the top family fundraising team.  Michael and I have all of you to thank for that amazing moment of pride.  It is because of all of you that our gratitude overflows.  You make it possible for our boys to go to conference and camp.  You make it possible for studies to be funded to push us closer and closer to a cure…and you instill HOPE in our children, so that they can continue to say YES to all the possibilities life has to offer.  Our family loves life a little more fully, a little more deeply, and lot more happily knowing that Parker pushed through this scary time, reminding us how precious life is.  Please hug and love on your children and family and keep on HOPING.

Living in the Moment…

We really try to live in the moment…yes, sounds cliché but it is true.  We’ve learned that living in the here and now is much easier than looking too far into the future of what’s to come.    And we put much faith in believing that we are doing the best we can with each moment…and that is all we can do.

We are rounding up the end of the school year.  Logan has been done for several weeks.  He graduates from high school with an AA because he did early admission into college his senior year.   He received one scholarship and is waiting on several others.  This fall, he will start his junior year at the University of Florida, as he moves towards his dream of becoming a pediatric rheumatologist.    We are incredibly proud of him and we are packing in as much fun as possible, with our grown-up kiddo,this summer.

Parker has missed much school this year because of his chronic illness, the pain it causes, and because of the major reconstructive surgery he endured.  He’s been going back to school part days as much as possible.  He is only two weeks away from the last day of school; and he is still unsure if he will be able to proceed to the 10^th grade.  This is causing him much stress even though we are stressing to him that he can only do his very best and we will support him moving forward no matter what happens.  As much as we try to explain to him that his health had to be taken care of first, it is very hard for a 15 year old to watch his peers move forward over and over…often leaving him behind (in many ways).  In the big scheme of life, we all know that his health is his “life”…but oh how it hurts our hearts  to know that he knows that his friends go “out on the town”, have dates, go to all kinds of fun events, play sports, drive cars, and do all kinds of fun “teen things”.

So we try to focus on the JOYS…Yes, Parker went through a very intense surgery on his legs, feet and ankles and it was way tough beyond words…but now he is walking and he is aligned and his pain in his feet and ankles have gone from a daily 10 plus, down to a 6.  And he doesn’t need his wheelchair much at all.  He even walked across the finish line at the walk, only 2 months after surgery.  And…Parker and Logan made their walk fundraising goal and raise over $10,000 with nearly $13,000 raised this year.

Some of you know, Parker has struggled with some heart issues.  His blood pressure is running low and his heart rate is running really high (even when at rest).  We have been working with all many of his specialists, along with is primary doc.  In fact, his primary doc has felt that he is so complicated that she would like him to see someone with more expertise coordinating multiple health issues.  So she has sent all his records to a pediatric critical chronic care specialist at our local hospital and we are waiting to get him in.  We have done our very best to try and get him the help he needs without the trauma of a hospital stay.  And the last month has been way intense with lots of tests and specialty visits. 

We have been working closely with his pediatric cardiologist and he really feels that this last surgery triggered his autonomic system to go haywire.  And although he sees this more often in teen females, he has seen this happen in a few others after surgery on limbs.  He feels that Parker has autonomic dysfunction or POTS.  His heart rate actually went over 200 right in the doctor’s office during his EKG…  The cardiologist said the heart monitor he wore confirmed his concerns and since then, he has worsened.  He is also having some GI issues, trouble swallowing, difficulty urinating, and sweats/chills.  So, we are trying to control the symptoms, while we try to figure out what hospital to take him to.  There are only a few in the US that deal with this. He said the wait time is usually 2-4 months to even get in and he will be there a minimum of 5 days.  Our choices are Mayo Clinic-Rochester, Cleveland Clinic, Children’s Hospital of Philadelphia, and NYU.  Vandy has one too but they really only treat adults.  So in the next 2 weeks, we are trying a few things and researching to figure out, given all his issues, which hospital would be the best.

In addition, we have been working on approval for 2 surgical procedures that he hopes to have this summer so that it doesn’t interfere with school.    One procedure is neck nerve ablations and the other is insertion of a nerve stimulator in his back for a trial.  The cardiologist feels that he can proceed with these procedures, but I have to admit, I do have my reservations.  But Parker has a ton of HOPE with what these procedures could do to alleviate his pain.  He dreams of getting off of pain meds and learning to drive.

On a joyful note, Parker's papallidemia is healed and so no more pressure on his optic nerves and they are almost completely restored.  This also means that the psuedo tumor is likely healed too!  Thank God!

Also, we are celebrating that Parker was nominated by his school for the Prudential Presidential Community Service Award and he won this year.  It was a complete surprise and he walked to the stage, in front of his cheering peers, to receive this amazing recognition that only the top 10% in the nation receive for their service.    

He is also thrilled that he got into Camp Boggy Creek for a week at summer camp.  This camp is really special to him and he really feels it is his heaven on earth.  This year, Michael’s work has a promotional fundraiser to send kids to camp too…I just love that they see the benefit of this amazing camp and what it does for kids with serious illness so that they can enjoy some serious fun!  We hope all of you have some serious fun planned this summer.

Entering Back Into the Real World: A Quick Update on Parker

Since Parker’s surgery, on March 2, on his legs, ankles, and feet, it is officially confirmed that Parker is OUR HERO and absolutely stronger than he ever thought he could be.   Tomorrow will be his first outing out of the house and we will be going to the doc to get his casts on.  Once the casts are on, then he can go back to school.  So, he is going to try go back on Friday to take the state writing test; since the deadline is Friday.

He is progressing but definitely has a very long way to go.  Last night was the first night that he didn't call over the “walkie talkie” for help.  Michael had a meeting with his pain management doctor yesterday morning and conference called me in on the phone and we are adjusting Parker’s meds to hopefully help him out.  The struggle has been the shooting pain, some minor bleeding at the pin-sites, numbness, and muscle cramps.  And even though he had a fever yesterday, we think it was more JA related than surgical…so we are incredibly thankful that there hasn't been infection.

We will try to update more this weekend.  For now, we thank everyone for the out-pour of love and we ask that all of you please either sign-up to walk with us on May 2 (it’s free to register) and/or please consider making a donation in honor of Parker and Logan.  Click here to get to the walk page.  Time has slipped away from us and the walk is just over a month away; so we need to get our team together very soon so we can make our shirt order.  We are forever grateful!

Much love,

The Lentini Family

P.S.  There is one more picture below so if you are skirmish and don't want to see a bruised up foot and a pin poking out, don't scroll down .

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Surgery is Done...Now for a Whole New Kind of Torture Full of LOVE

In Pre-Op

Never ever did I imagine my life would take me on this journey…All my life, I have wanted to work with children with disabilities…but never did I think I would have children with disability…I have dreamed of becoming a mother…but never did I believe I would be the mother of two children with chronic illness.  I have hoped to marry a loving, caring husband, but never could I imagine I would partner with the most amazing individual with incredible amounts of love and he shares it all with me and our two beautiful boys; and still he has love to spare.

Some days my brain feels like its on overload.  Today is one of those days.  Mixed feelings fill my heart, giving me a sense of emotions-on-overdrive…I just went from tough mean-mommy, to having a sense of stabbing sadness of what Parker has to endure if he wants to walk, to my heart breaking knowing that he is telling us (PT, nurse and me) the complete truth that he hurts so very bad, to knowing I must muster up that tough love and MAKE him do what he doesn’t want to do because he knows it will cause more and more pain…  I had to make him put those arms with flaring shoulders and wrists down and wiggle and scoot and drag those million-pound legs/feet and lift himself into his wheelchair.  Then the torture continued as we had to then get those legs off that bed and down onto the wheelchair foot rest as tears rolled down his face and “I hate you all” came out of his mouth…But… the one emotion that is emerging more than all the rest is incredible pride in the strength and bravery that Parker is enduring this…because he DID it, he really DID it with splints on his legs/feet, cadaver bones piecing him back together in alignment, and pins criss-crossing through his bones holding it all together and in place.   

I know there are many adults with RA that have had reconstruction…but we only know a few kiddos who have endured some sort of reconstructive surgery.  WOWZERS!  I am so incredibly amazed with each and every one of those kid-heroes.  What they have accomplished is a miracle.  I just watched my kiddo go from hating us to just about doing the entire transfer back into bed, with such determination, that he did most of it with his own strength and not one complaint.  The nurse was shocked!

Gram & Gramp

This hospital does not have pediatric rheumatologist; and so the medical staff rarely work with kids with juvenile arthritis.  So, to have a kid like Parker and all his complexity…well, let’s just say, that all have learned a ton this past week and they have been absolutely open to learning.  I actually really appreciate their interest and questions, verses just pretending that they “know”.  It is very refreshing and Parker feels really smart as he educates them.

So if you are reading all this…YOU are one of those really special people who care a whole lot.  We so appreciate all the out-pour of love, support and prayers we have received this week.  It truly has powered our entire family and we really needed it.  Many of you have asked how you can help…there are two ways you can help both us and children with JA.  One, our whole family is very involved with the National JA Conference this year because it is being hosted in Florida.  If you know a potential donor, in-kind sponsor, or you would like to volunteer with either prep or at the conference event, please contact us or Susan Cuellar (Florida AF office:  813-968-7000 or 1-800-850-9455 x11) and tell her you know us and how you would like to help. And two, as you may know, the walk will be this May and we would love for you to sign-up (it is free) and walk alongside our family on “Parker’s Purple Playas and Logan’s Dream Team”.  (Click here to sign up on our team.)  And of course, we also welcome donations to our walk team, too because we definitely need more research towards a cure, to send kids to camp, and to scholarship families to go to conference.

Like I said, never did I imagine that my life would take me on this journey…but it has and I am proud to say that I have become a nurse, a fundraiser, a conference planner, a JA educator, a counselor, a motivator, but most importantly…I am a wife and a mother who deeply loves my family and am so happy that there are people like you in our lives who love us too.

Parker's first post-op request was to see his brother, Logan.

Parker is Getting Surgery in 2 Weeks

We finally made it to the pediatric orthopedic doc.  Yes…we have been putting it off, only because it didn’t seem to be “the most urgent need”.  We went, thinking that the doc was going to recommend “bracing” Parker’s left ankle.  We were definitely shocked to hear that Parker needs extensive surgery.

As Parker got off of the examining table for the doctor, his right foot hit the floor first and the doc immediately commented “Oh that right foot doesn't look too great”…but when that left one met the ground, he quickly shifted all focus to that left foot and ankle saying, “Oh he definitely needs surgery; this left one is way worse.”  Well, we knew it was worse but …gulp…surgery?!  He then went into great detail to explain that Parker needs surgery and for several reasons:  both ankles are collapsing towards the ground and the ligaments and tendons are not doing a good job holding things in place; his foot/toes are turning along with his tibia bones; and he felt that the issues with his feet, ankles, and legs could be contributing to the extreme pain he is having with his knees, hips, and spine. 

The solution, in two weeks, if all his docs clear him, he will be having surgery on both of his feet, ankles, and legs.  We had several docs recommend the doctor that we saw; and we are very glad that he is also the orthopedic surgeon; so it was a one stop shop.  He will be working on tendons, ligaments, and bones, making cuts in his bones to insert cadaver bones and pins with a goal of aligning both feet and ankles.   

Of course, Parker is not a straight up easy patient…not that this surgery is easy, but there are many things for his surgeon to consider.  The last time he had broken bones, it took 6 months to heal…much longer than usual.  He has full-on osteoporosis and of course juvenile arthritis.

His immune system is compromised due to his meds and also because he has hypogammaglobulinemia.  He has pulmonary obstruction and restriction.  And so, the surgeon is talking to his docs and he is going to use a bone stimulator to help with bone healing.  We are praying hard that his body won’t reject nor attack the foreign objects that they are about to insert to correct his feet, ankles, and legs.

He will have at least three days in the hospital; thank goodness this doctor is local.  He will then need to be out of school for at least a week.  The good news is the surgery is right before spring break…the bad news is recovery is during spring break…  But we are really trying to focus on the fact that he will not lose days at school since he is so close to going over 51% days missed at school.  But Michael, Logan, and I feel so sad for this kid.  It seems that every school break, he is struggling with something big, making it difficult to enjoy time off.  This means that Logan and Michael will be vacationing with our friends without us…so Parker and I welcome visitors to cheer him up.  Of course, call first.

Parker will have the first set of casts that cannot get wet, on both feet/legs for 4 weeks and he cannot bare weight on them either.  Then he will get a second round of casts that he will be able to put small amounts of weight on.  He should be able to return back to school, in a wheelchair, after spring break.

When I think back on last weekend at Camp Boggy Creek and how he danced and kept stopping due to pain, I just cannot imagine how this kid does it.  But he DANCED and he was HAPPY.  We love him so very much.

So here we go... on our newest journey...the journey to maintain walking and hopefully towards less pain.  Then, Parker, you can DANCE your little heart out!