Thursday, February 4, 2016

Post-Op Report…Back on His Feet

Since November, I have felt like I have been functioning with heartache and moving in slow motion while the world around me whirls on in it's constant motion.  I finally feel strong enough to share this piece of my heart. (If you get sick to your stomach easy, don't read on...but this is what Parker endured and now lives is real and painful.)

Parker has been in such a fight during these past 3 months.  He had his “surgery re-do” on his left foot.  We had no idea how much more extensive this surgery was going to be in comparison to his previous bi-lateral surgery that was done in March.  The surgeon had to restructure and realign his foot, ankle and tibia.  This meant bone turning, ligament and tendon tightening and lengthening, pinning bones once again, and inserting THREE titanium screws to fuse his foot into place.  The medical terminology for his surgery: Subtalar fusion (joint between talus bone and calcaneus bone is removed and joint surfaces are fixed together to decrease pain and improved function) with calcaneal osteotomy (cutting the heel bone and shifting it to correct deformity) He endured a splinted cast (which adhered to his skin due to the blood and took 30 minutes just to remove), then a regular cast, then a boot cast with bone stimulators, and now he has a brace.

Just this last week, he has finally begun taking steps again.  He is so happy to be on his feet again.  Of course, his first few days of being able to stand, he way over did it.  He even danced some.  A tearful moment.  Then he went into a JA flare.  Another tearful moment.

These past three months we have seen him in more pain than I thought possible.  Week three through week eight were the absolute worst.  He is quite glad that now physical therapy (PT) can begin.  He was going to start PT this week, but yesterday we had to take him to the doc and they had us take him to the ER, where we spent the entire day/evening.  There was concern that he had pericardial effusion again.  He was having pain with breathing.  Such intense pain that it woke him that night.  His D-dimer blood labs were elevated which we found out could mean a blood clot.  After many labs, an EKG, x-rays, an echo-cardiogram, and a lung CT… he was cleared to go home to sleep in his own cozy beds.  Thank goodness all the tests were ok.
A few days prior to Parker’s surgery, a film crew came to video his pre-op appointment and our family to honor Parker at the Arthritis Foundation’s Night of Champions.  Logan went to the event in New Orleans to speak on behalf of his brother.  The event was the day after Parker’s surgery. Below you will see the video that the AF made to honor Parker. Parker is forever our champion. 

Wednesday, December 30, 2015

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.  

Tuesday, December 8, 2015

The CURE for Chronic 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.

Monday, November 2, 2015

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.

Sunday, October 25, 2015

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.

Tuesday, October 13, 2015

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.

Friday, October 9, 2015

Here We Go 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 18th 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.