I Can See with my Heart…

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

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

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

Our summer vacations are now built around the JA Conference each year.  This year, JA brought us to Colorado.  We were fortunate enough to be a family who the Arthritis Foundation helped fund going to this beautiful event and location.  This year was the 30^th anniversary of the

30th Anniversary Tree planted by AF

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

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

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

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

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

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

First snow balls ever!

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

Lisa & George at Fruitcakes in the Alley

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

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

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

P.S Then we played golf I won.

 We had an amazing trip and this year my aunt and uncle came with us to learn more about JA.  It was a wonderful time in Colorado.  Enjoy our pictures...

Keystone with Aunt Sandy and Uncle John 

JA warrior BBQ after the Conference

The Hoe Down

New Skate Boards

Smiles light up the room

Snow Tubing 

Silly pose

Love Land Pass

Lunch in Breckenridge at Kobe's

Hanging out in Breckenridge

80's Dinner

Miniature Golf

Roller Coaster Fun

Denver Botanical Gardens with Chahuly Exhibit

Snow Tubing

Aunt Sandy and Logan

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

Practicing our "Florida"  Announcement

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

We went snow tubing with the Tonnings.

Colleen and Rochelle

Logan and Caitlyn

Vail Trail

Our Elevator Buddies....

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

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

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

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

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

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

Parker's doc in PICU first met him at  Camp Boggy;
Nice familiar face!

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

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

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

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

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

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

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

The Gift of Life, Love, and Purpose

Every single day is a gift!  In the spirit of “Rare Disease Day” (which also happens to be my

grandpa’s birthday); we unwrap every gift before us with new wonder.  

A very cold, fatigued kiddo
during walk kick-off
Walk Team Page:  Join Parker's Team (click here)

This week was way busy with much reflection; and we feel certain that we are blessed with Parker’s very wise, compassionate doctors.   And this week we had discussions with 4 of his docs.  We feel like we are on a good path and that Parker has a voice in making decisions.  Needless to say, the decisions continue to be difficult and choices no child should ever have to ever consider.  And yet, Parker does …and he weighs it all out with more wisdom than many adults.

We had our walk kick-off this week and one of Parker’s docs spoke.  Her presentation sparked many thoughts for us.  She spent some time chatting with me after the presentation and helped explain some pieces of the “Parker puzzle” that we never quite fit together.  One of Parker’s meds, methotrexate (a chemo drug), was discontinued during a hospital stay a little less than a year ago.  He was switched to prograf, a drug usually prescribed to help the body not reject organ transplants.  We haven’t heard of any other children on this drug; and we are pretty connected in the “JA world”. 

So, I inquired why this drug is being given to Parker.  She said that it was because he was in MAS at the time.  For those of you not aware of what MAS is…it is pretty much every family’s nightmare that has a child with systemic on-set juvenile arthritis.  We knew that Parker was on the verge of MAS a couple of past hospital stays but we didn't know that he was fully in it and that was why prograf was chosen…and if we were told at that time, MAS was not the word used.  However, thinking back on that hospital stay, it definitely was an intense stay and he was very sick and they did explain the reasoning behind using prograf.  And I think that the doc was probably trying to keep me calm and protect my momma heart.  I definitely was hearing white noise and felt like I was in a fog as I tried hard to focus on her words and focus on my reaction and stay calm.  This is when trust is the up-most importance, because your child is witnessing so very much alongside of you and prayers become your constant inner voice.  For those of you who don’t know what MAS is, it stands for macrophage activation syndrome.  It is severe, dangerous, and life threatening.  It is the number one cause of death in kids with systemic JA.  Here are some links about MAS:

lhttp://www.the-rheumatologist.org/details/article/2041587/Systemic_Juvenile_Idiopathic_Arthritis.html

http://www.the-rheumatologist.org/details/article/973181/Macrophage_Activation_Syndrome.html

http://emedicine.medscape.com/article/1380671-overview

In addition to our walk kick-off, Parker endured two rounds of sacral nerve ablations.  He has two more rounds next week to complete the series of 6 for the sacral area.  This last round was pretty tough on him.  He is a strong little tough warrior.  He was then going to move on to the lumbar region; but we need to stop for a period of time to deal with some endocrine issues first.

The endocrinologist called and his labs and bone-age scans showed that he needs further testing.  So, we are scheduling a day long test day at the hospital to proceed with testing for possible growth hormones.  The “good news” is because he has not yet hit puberty and his bone age is “younger” than it should be, then he could potentially get growth and puberty hormone with good results.  So we are actually hoping he “fails” the day long tests, so that he can get help.  Yes, you read that right.

At first I was upset to hear about another round of “bad labs” but after seeing the rheumatologist Thursday, she explained things in a way we could better understand and that this could really help him.  So, we are going to stay in that mindset and hope for the worst to get the BEST!

Michael and I are pretty exhausted these days.  We are just trying to keep all the balls in the air and if one drops…we hope it is one that we can just do without and let roll away.  So much that is happening is movement in the right direction, it is just constant.  And there seems to be a domino effect.  And then there are my health issues and Logan’s health issues that also need attending to; we must remind ourselves over and over that we can only do what we can do in a day.

WWW.HIGH-5-CLUB.ORG

And we also must remember those precious gifts:  Parker is off of prednisone after 4.5 years and he is off of morphine after 3.5 years (one of his narcotics).  Parker re-started an on-line virtual class yesterday; and he is determined to not look back and to continue moving forward…wherever it takes him.  He is pushing through his pain and walking more and using his wheelchair less.  He is excited about his and Sadie’s High-5-Club; and they

Sadie and Parker deliver High-5 Care Kits

delivered their first set of High-5 care kits this week and can’t wait to do more!  Our family and friends’ encouragement and love continue to lift us up and power us on.  Our lives have purpose.  We have faith in what is meant to be will be… and it gives us peace and hope for the future.