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.

 

High-5 to Parker and Sadie for Starting High-5-Club!

Parker is now 14 years old.  At 8 years old, systemic on-set juvenile arthritis settled in his body and changed his life forever.  During these past six long years of blood labs, scans, tests, procedures, surgeries, 12 specialists, infusions, therapies, counseling, research studies, medications, acupuncture, educational plans, shots, orthopedics, hospital stays, equipment, and more, (whew…that’s a lot) we have been on quite the journey.  We appreciate our many blessings, our huge accomplishments, many new-found friendships, family togetherness, and life just a little bit more intensely than before JA.  On this journey, we have encountered kindness, strength, love, and incredible little people who challenge this disease each and every day.  But Parker met one very special “little person”, Sadie, and they are now forever friends.

Parker met Sadie in the infusion room where both endured many days together getting treatment.  They quickly became great pals because they understand each other.  They cry together, laugh at things that only children with chronic illness would find funny, and continually uplift and encourage each other.  They quickly recognized they were not alone in this journey.  So, they decided to help all kids battling chronic illness know that they, too, are not alone.  So four years ago, they began helping uplift other kids.  They celebrated their birthdays together by collecting treasures for the infusion room in lieu of birthday gifts. Then, they collected food and gift cards for families in need, but they wanted to do more.  So they officially started their non-profit called “High-5-Club”, a 501(c)(3) #23-3186664.

Why High-5-Club?  Well, they joined a sort of “JA Club” when they got diagnosed and yet, good can come from difficult situations….So, High-5s are a fun, quick and easy way to encourage other kids and their families.  Families enduring chronic illness are on a constant, chronic journey filled with unknowns and heartache.  Parker and Sadie have great big hearts and they want to encourage and recognize that all kids are incredible and deserve tons of love and great big high-fives!  So, Parker and Sadie began working on their “High-5-Club” (www.high-5-club.org), with a little help from us moms, and launched it to the world this month. 

What is High-5-Planning to do?  Our first High-5 goal is to boost the morale of families dealing with chronic disease by teaming with hospitals to distribute “High-5 Care Kits”.  These kits include pre-paid food and gas gift cards to help offset the cost of getting to and from medical appointments and treatment. After surveying families, approximately $150 on average are spent for each visit for medical treatment.  Medical treatments occur anywhere from every two weeks to 3 months, with many families going to monthly appointments.  And the more medical specialists a child has on his/her team, the more out-of-pocket costs add up.

As funding support grows, Parker and Sadie have four additional goals for High-5-Club:  The “Up High! ” Campaign (children encouraging other children), Social-Emotional Support (a webpage with resources and materials), Micro-Grants for Alternative Treatment, and Pediatric Fellowships.  These goals were chosen because we are trying to fill a gap in funding to meet needs of children with chronic illness and their families.  Parker and Sadie are kids on a mission and are very excited to share their joy with all of you.  

Many of you have already begun to ask about High-5-Club and how you can support Parker and Sadie.  There are several quick and easy ways you reach out and give “High-5s”. 

·   One, you can go to our Facebook page (Click here to go to our Facebook Page) and “like” High-5-Club; so you will get updates on what is happening and to reach out and give children virtual High-5s for the amazing things that they do. 
·  Two, you can make a High-5 donation by going to our secure website at www.high-5-club.org or by sending a check to High-5-Club, P.O. Box 621044, Oviedo, Florida 32766. 
·  Three, you can let us know about a company or program that might want to partner with us or match funds we raise. 
·  Four, you can share this information with your friends and family to spread the word and help us raise awareness that all kids need “high-fives”. 
·  And five, you can post High-5s to other children by using our “high-five” pictures on our Facebook Page, or by sending a High-5 encouragement card (on website soon) and let them know how amazing you think they are and why.

High-5 to Parker and Sadie!  We love you!

Click here to see Parker's and Sadie's Video!