Wednesday, April 25, 2012

Positive Purple Power by Parker

Logan, Mom, Dad, and Me
Southern Wine & Spirits Support My Dad

So last Sunday we had a fund raiser for arthritis at one of my dad's accounts, The Dirty Shame.  What we did is we were selling drinks and ALL the proceeds and even the TIPS were going to my team for the Arthritis Foundation’s walk.  At first we weren’t getting the crowd we really expected.  So what I did was sit in my wheelchair in front of the venue and asked for people to come on in and told them that it was for arthritis.  We had a couple people come in.  But we weren’t really getting any donations. So I asked for a cup that I could put money in so that people knew that they could donate even if they didn’t come in for a drink.  After a while, people started to say things like “I will come back later…” or “here’s a dollar…” and we started to get donations.
Mom's Friends from Work Help Out
Aunt Janey Took Pictures for Us

Logan Helped Get Donations

Aunt Sandy and Uncle John with Me
Aunt Sandy and Uncle John Even
Brought Friends who Also Donated
Then later, two old guys walked by.  I asked them if they wanted to come in because all proceeds went to kids with arthritis.  But they said they were just at a bar for the last 2 hours.  And I was kind-of sad.  But then my brother Logan said you can just donate here if you would like…you don’t have to buy a drink.  So the one dude said, “Ya, I guess I can do that.” And he gave us three bucks.  And then he started asking me questions about what it is for a kid to have arthritis and how it affects me.  So I briefly told him my story of what I have gone through.  And then his friend came over, the other dude who was also old, after I shared my story and ended up giving a dollar too.  And that made me feel like I had accomplished my goal.  If I can just tell one person a day that kids can get arthritis too, then everybody will know in no time.

Later, a lady walked by with her husband.  I told her about kids with arthritis.  And she decided to make a donation.  She gave $20 and grabbed my head and said, “God bless you.”  At the end of the day, I had ended up raising close to $400.

Mom's Early Childhood Friends

I want people to know what I go through but I don’t want people to treat me like a baby.  What I go
through is really hard and it really hurts.  But half the days I lay on the couch or in bed because I hurt so badly.  And sometimes I end up sleeping with my mom at night because I am scared I will wake up in more pain. 

Even Candy from the AF Came with
Her Husband

Aunt Regina, Victoria, and Uncle John

Anne and Chaz Brought Friends Along
We went inside when it started to rain
Sometimes I feel like the meds aren’t even worth it…they hurt my stomach sometimes and I don’t know anymore.  They need to invent meds that don’t hurt and taste good because then kids will want to take their meds.

Life is going to get better, I know it.  I know it’s hard right now but the future is bright for us.  I feel like I have helped the “arthritis community” because at least I am letting other people know about this disease.
I Invited People in
and also to Donate
Nice End to a Wonderful Event

Monday, April 23, 2012

Open minds and open hearts bring openings for possibilities!

I want it all to go away today…no more JA!  My heart breaks for my son.  It seems that no matter how hard we try to insert normalcy or fun moments into our lives the price Parker pays scares me. 

We want him to walk.  We want him to be active.  We want him to play.  As he should...  But there is such a fine line between the joy it brings and the misery that follows. 

Don’t get me wrong please…we are happy about so much (as you can read in the previous post), but this yo-yo life is so difficult to witness.  Only Parker LIVES it…we need to continue to raise awareness.  These children need a voice that is loud and proud!

We know that people don’t want to hear about depressing things.  We know that people don’t desire to experience heart ache.  We know that life is going on all around us and there is much beauty in life.  We actually feel that our hardships have taught us to appreciate life’s beauty all the more because when simplicity and good health is no longer…you cherish the moments of joy.  They are truly blessed moments…

But I want ALL to know, to listen, to understand the depth of what our family (and many other families) are dealing with in the privacy of their own homes.  This last week was extremely hard for Parker…again…As many of you know, he is now in hospital homebound.  This week was FCAT week.  He could barely get through the three mornings of testing, not because the content was too hard, but the mere fact that he had to “do it”.  He not only completed the testing in intense pain, but also through his incredible fatigue.  He fell asleep during testing, but also on the ride home, and again once we got home.  (Yes, we know that he can be tested at home…but they thought he could handle it at the test site and we wanted to try.  Parker wanted to try.) 

Parker barely did anything Friday or Saturday following FCAT.  But when he asked if a friend could spend the night Saturday we jumped on it and he did.  He had so much fun with his friend playing video games and chatting.  And hopefully we didn’t scare him too much with the infusions he witnessed. 

Parker then rested all Sunday morning to prepare for our Sunday afternoon fundraising event.  He insisted on going.  He took extra morphine, slept all the way there and he was a complete hit!  I really don’t know how he revved up the energy to be engaging and gracious with everyone who came out to support HIM; but he did it with a smile.  And he has been crashing ever since.  HARD.

When he was getting ready for bed he said to me that it didn’t matter how much money he raised today because he taught some strangers about juvenile arthritis and one of them was an old dude and his old dude friend.  I just love this kid.  He just wants people to KNOW that kids get this and it is an AUTOIMMUNE disease…it is not osteoarthritis!  He is so very strong. 

This disease is devious and deceiving…Parker can look fine on the outside, his spirits can even be high and then in the split of an instance things can change…and we never know when it’s going to hit.  This year we have learned a lot about this disease…one thing that we have learned that I didn’t want to learn is that few children with systemic juvenile ever go into un-medicated remission.  We have also seen children pass away from this form of JA.  That thought totally takes my breath away.  It makes me pause and truly appreciate every single God given moment we have on this planet together.  But the gifts we have are endless…we have seen when people open their minds (to accept this disease for what it really is), with open hearts (to show the love), then opportunities open up to endless possibilities…

I end with “William’s Wish” we prepare for our own local Arthritis Foundation’s walk.  William’s family is forever in my prayers and heart.  Rest in loving peace sweet dear William.  Please click on the link below…

Much love to each of you and may your heart and mind always be open!

Tuesday, April 17, 2012

With Deep Heartache Comes Happiness…

We are a happy despite all our struggles.  In fact, our struggles have brought us the richest, deepest happiness possible.  Through our intense sadness we have seen the goodness in people.  And for that, we are truly touched and blessed.

We have met so many people along our journey…all with their own kind of journey.  People of all walks of life…some we have met in our childhood, some through school, others through work, people through our common interests, many from family members, others through networks, and those who can relate with our struggles.  The connections we have made have webbed across this beautiful world of ours.  And this web keeps us connected… 

I am continually amazed with the goodness in people.  And the goodness keeps on giving.  And all the kindness that has touched our family gives us such hope and inspiration and energy.  People are touching our family in simple and yet very profound ways.  I just have to share a few of our amazing experiences…a small preschooler is collecting her “Pennies for Parker’s Purple Plays”; Ben Zobrist granted our dear boy’s wish and was so kind and engaging; a total stranger mailed Parker a bobble head, from many miles away, of Ben Zobrist after seeing his Make-A-Wish story; Logan’s doctor in the hospital personally called his school to tell them how wonderful he is and to encourage their support of him; our bosses are completely supportive of both of us; a preschool is raising money for our walk team; a youth group leader we have never met sent a letter of how Parker inspires his youth; a friend has volunteered to show up at 5:30 a.m. to help set up the walk (wow); our very special friends always remember to not only check on Parker but also our sweet dear Logan; my aunt has folded more laundry than I ever care to tell; our neighbors have helped with our dog when we rush off to the hospital 2.5 hours from our home; nurses and doctors who are not even assigned to Parker come to visit him when he is in the hospital; the Boy Scouts and Girls Scouts who are working hard on behalf of their friend Parker to raise funds; the amazing Child Life group works endlessly to bring joy to the floors of the hospital; many children have collected many many can tabs at school to benefit the Ronald McDonald House; friends send cards or call at just the right moments; teachers have continued to check-in on us; little children whose lives are touched by JA (including siblings) touch base with our boys and send texts and messages; the infusion nurses surround us with love through their care; colleagues have stayed close and connected during the most incredible time in my life; the Arthritis Foundation has given our family the opportunity to grow; learn, and meet others; the manager at the Ritz gave our family the opportunity to see Parker and Logan glow when meeting “Young the Giant”; strangers donated to our AF garage sale; Camp Boggy Creek gives so many families continual love; our camp counselor came to visit Parker in the infusion room; so many, many people have joined our walk team and are raising funds for the many touched by this disease; many people who have donated to our walk…some we don’t even know; a special someone who made a “Tucker Turtle” blanket to raffle with Parker’s story; the young man who taught us about power, peace, and purpose; the Dirty Shame who is hosting a benefit with 100% of the proceeds going to the Arthritis Foundation; the Parrot Heads support our children with JA; many early childhood providers/trainers came to play with all the many children at the Family Connect Day; the little friends who donated toys to the infusion room; the individuals who welcome Logan into their homes at any time on any day; the Elf with Elves that arrived at our front door with a purple mini Christmas tree and tons of love in their hearts; Parker’s doctors who take the time to connect with him….really connect with him; our friends and family who say just the right thing at the right moment or simply listen; my team at work who carry on no matter what; the children who push through their pain with smiles on their face that fill the hearts of all they touch; and the lady we recently met in the hospital who totally engaged my son and encouraged him to keep on keeping on….to each and everyone of you ….thank you.  Our lives are forever richer with you in it!

Keep paying it forward…Never under estimate the wonderful things that can happen when lives are touched by loving relationships…the best medicine in the whole wide world.

Sunday, April 1, 2012

We Will ALWAYS Push Forward! That’s What Parker’s Purple Playas Do!

Our journey with this horrible no good very bad autoimmune systemic diseases is teaching us many valuable lessons about strength, love, resilience, faith, hope, relationships, and perseverance…no matter what!  This disease is smack in our face every single day and I hate it with a passion and yet at the same time I love what it allows us to “clearly see” and “completely and fully appreciate”.

Never ever did I imagine that our journey would take us down a path of what feels like NO return to simplicity.  But yet, simple moments are what I am finding that I value the most!

I have told many who are following our journey and who lift us up in prayer or carry us along with their encouragement that I would share what our newest days are like.  Well, we are seeing some “good moments” with Parker’s health and he has been able to enjoy some fun activities again.  For this we are truly grateful to his doctor for continuing to think a bit outside the box.  We all know, Parker needs some “forward thinking” around his health issues.  However, our insurance has changed a bit with our state's new plan (I am a state employee).  We now have to go through a new company when ordering our medicine and that has resulted in some challenges and additional expenses.  Parker’s doctor actually wants him to get twice as much of the newest med but they will only approve half of the amount…Completely frustrating.

Parker has discontinued Actemra and Enbrel.  When he was in the hospital he got a “boost” of Remicade and was also started on Kineret.  He is still on all of his other oral meds with an increase of his steroids due to his recent hospital stay and huge flare of mean ol’ systemic JA.  And he is continuing his monthly infusions (right now every 3 weeks) of IVIG to boost his immune system.  Many families in the world of JA and RA refer to this newest med we are trying, Kineret, as the “evil med” because it is traditionally given as a daily shot and it burns so bad the kids, and adults, beg for something else.  (Yes, every single day these children are being tortured.)  Parker is not getting it as a shot (for that I am thankful)…but he is getting it and not once a day but twice a day.  And I am infusing it into his port.  His port is now accessed all the time.  And every 7 days, a home health nurse comes to change out the port access.

Just to give you a true sense of what a daily infusion entails, we did our best to take pictures of the steps.  Cleanliness is key because the port is a direct access to his heart and we certainly do not want to infect it.  The whole procedure takes me about 20-25 minutes.
1.  Wash really really good…using paper towel to dry and open frig and doors with towel.

2.  Get Kineret shot out of frig and wrap hand around it to warm it up as I prep everything else.

3.  Clean bathroom area with Clorox wipes and clean drawer knobs and plate to hold all syringes/shot.

4.  Pull out 2 saline syringes, 1 heprin syringe, 1 empty sterile syringe, 1 cannula (sterile syringe cap), 2 alcohol wipes, 2 non-latex gloves

5. Place Kineret down (remember it’s been warming in my hand), put on gloves and open all items making sure not to touch tips and only loosening caps


6.  Transfer Kineret from syringe with needle to the empty sterile luer lock syringe and carefully cover with sterile cannula, place needle syringe in sharps container

7. Then I can take all of the items to Parker and get ready to administer using the nifty acronym that I was taught:  S.A.S.H. (however I had to add an extra saying to it because otherwise “SASH” doesn’t work at all!)  First “unlock” SASH, then “lock it back up”…

8.  So what this means is: 
Unlock clamp, clean with alcohol

Saline (taking great care to not touch tip AND remove all air bubbles at each and every step)



Administer med Kineret (over 3 minutes)

Saline (first portion is still very slow because Kineret remains in the tube)


Lock clamp

9.  In between each and every step the port access needs cleaned with alcohol and the air bubbles removed from the syringe by holding it up, pulling back on the syringe to remove the vacuum, and then pushing it up to the top of the syringe.
When done…let out a big sigh of relief!

Yes, it is all very stressful! Parker’s fevers are gone now and his movement and pain is a bit better on some days and he is getting a few bursts of energy here and there.  Yes, he is still in considerable pain; he still is having vasculitis, the rashes are trying hard to break through and are faintly there; his joints are still swelling but not as bad as when in the hospital; and he is still have quite a bit of fatigue…but he is also doing more because, like I said, he has small bursts of energy.  This autoimmune stuff is no fun at all because he gets so excited about being able to have some fun and be a bit more physical and then after he does, the price is costly…he spends much time in bed.  But he did have fun and he is glad he did!  He is having some stomach issues again, but we are very thankful that his heart, lungs, and other organs are doing ok right now.

I took his port out after his infusion Friday morning so that he could swim for bit…30 minutes.  My first de-accessing of his port ever!  Also on Fri, he was invited back to his middle school to join their neon dance.  He had a blast.  He saw his buddies, wheelchair danced so smoothly that he drew a big crowd around him cheering him on, and he even dance with a girl (a friend….and very happy that she asked him to dance).  He went on and on about how much fun the dance was and he now wants to go back and visit the school during lunch time so see his friend again!  He really has missed the face-to-face contact.

I really don’t want to give Parker these infusions twice a day!  I really don’t want to be scared twice a day that I might do something wrong or hurt him in some way!  I really don’t want to see this horrible autoimmune systemic disease outsmart every drug we try!  But we must, so we do!  And we will ALWAYS keep pushing forward…until there is a cure!  We are hoping to get Parker into the RAPPORT study that is an National Institute of Health (NIH) because that drug is much less intrusive than what we are doing now and is a drug already approved but for other uses.  But the other uses are somewhat related to symptoms of systemic JA.

If you are reading this, you can see that Parker is in the fight for his life.  We continue to be inspired by his strength, wittiness, and outpouring of love.  We want to support him every step of the way, but we cannot do it alone.  So thank you to each and every one of you reading this and thanks to those who are following our journey, praying for him, supporting us, and/thanks to those donating your time and/or money for our upcoming walk.  We only have a little more than a month until Parker’s Purple Playas Pound at JA at Al Lopez Park in Tampa, Florida on the morning of May 5th.  We will be the sea of 50 plus people in purple!

With HOPE...anything is possible, even a CURE!