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.

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.