Parker's Purple Playa Power..Pounding at Juvenile Rheumatoid Arthritis
Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
Never ever did I imagine my life would take me on this
journey…All my life, I have wanted to work with children with disabilities…but
never did I think I would have children with disability…I have dreamed of
becoming a mother…but never did I believe I would be the mother of two children
with chronic illness. I have hoped to
marry a loving, caring husband, but never could I imagine I would partner with
the most amazing individual with incredible amounts of love and he shares it
all with me and our two beautiful boys; and still he has love to spare.
Some days my brain feels like its on overload.Today is one of those days.Mixed feelings fill my heart, giving me a
sense of emotions-on-overdrive…I just went from tough mean-mommy, to having a
sense of stabbing sadness of what Parker has to endure if he wants to
walk, to my heart breaking knowing that he is telling us (PT, nurse and me) the
complete truth that he hurts so very bad, to knowing I must muster up that
tough love and MAKE him do what he doesn’t want to do because he knows it will
cause more and more pain…I had to make
him put those arms with flaring shoulders and wrists down and wiggle and scoot
and drag those million-pound legs/feet and lift himself into his
wheelchair.Then the torture continued
as we had to then get those legs off that bed and down onto the wheelchair foot
rest as tears rolled down his face and “I hate you all” came out of his mouth…But…
the one emotion that is emerging more than all the rest is incredible pride in
the strength and bravery that Parker is enduring this…because he DID it, he
really DID it with splints on his legs/feet, cadaver bones piecing him back
together in alignment, and pins criss-crossing through his bones holding it all
together and in place.
I know there are many adults with RA that have had
reconstruction…but we only know a few kiddos who have endured some sort of
reconstructive surgery.WOWZERS! I am so incredibly amazed with each and every
one of those kid-heroes.What they have
accomplished is a miracle.I just watched
my kiddo go from hating us to just about doing the entire transfer back into
bed, with such determination, that he did most of it with his own strength and
not one complaint.The nurse was
Gram & Gramp
This hospital does not have pediatric rheumatologist; and
so the medical staff rarely work with kids with juvenile arthritis.So, to have a kid like Parker and all his
complexity…well, let’s just say, that all have learned a ton this past week and
they have been absolutely open to learning.I actually really appreciate their interest and questions, verses just
pretending that they “know”.It is very
refreshing and Parker feels really smart as he educates them.
So if you are reading all this…YOU are one of those
really special people who care a whole lot.We so appreciate all the out-pour of love, support and prayers we have
received this week.It truly has powered
our entire family and we really needed it.Many of you have asked how you can help…there are two ways you can help both
us and children with JA.One, our whole
family is very involved with the National JA Conference this year because it is
being hosted in Florida.If you know a
potential donor, in-kind sponsor, or you would like to volunteer with either
prep or at the conference event, please contact us or Susan Cuellar (Florida AF
office:813-968-7000 or 1-800-850-9455
x11) and tell her you know us and how you would like to help. And two, as you
may know, the walk will be this May and we would love for you to sign-up (it is
free) and walk alongside our family on “Parker’s Purple Playas and Logan’s
Dream Team”.(Click here to sign up on our team.) And of course, we also welcome
donations to our walk team, too because we definitely need more research
towards a cure, to send kids to camp, and to scholarship families to go to
Like I said, never did I imagine that my life would take
me on this journey…but it has and I am proud to say that I have become a nurse,
a fundraiser, a conference planner, a JA educator, a counselor, a motivator,
but most importantly…I am a wife and a mother who deeply loves my family and am
so happy that there are people like you in our lives who love us too.
Parker's first post-op request was to see his brother, Logan.
We finally made it to the pediatric orthopedic doc. Yes…we have been putting it off, only because
it didn’t seem to be “the most urgent need”.
We went, thinking that the doc was going to recommend “bracing” Parker’s
left ankle. We were definitely shocked to
hear that Parker needs extensive surgery.
As Parker got off of the examining table for the doctor, his
right foot hit the floor first and the doc immediately commented “Oh that right
foot doesn't look too great”…but when that left one met the ground, he quickly
shifted all focus to that left foot and ankle saying, “Oh he definitely needs
surgery; this left one is way worse.”
Well, we knew it was worse but …gulp…surgery?! He then went into great detail to explain
that Parker needs surgery and for several reasons: both ankles are collapsing towards the ground
and the ligaments and tendons are not doing a good job holding things in place;
his foot/toes are turning along with his tibia bones; and he felt that the
issues with his feet, ankles, and legs could be contributing to the extreme
pain he is having with his knees, hips, and spine.
The solution, in two weeks, if all his docs clear him, he
will be having surgery on both of his feet, ankles, and legs. We had several docs recommend the doctor that
we saw; and we are very glad that he is also the orthopedic surgeon; so it was
a one stop shop. He will be working on
tendons, ligaments, and bones, making cuts in his bones to insert cadaver bones
and pins with a goal of aligning both feet and ankles.
Of course, Parker is not a straight up easy patient…not that
this surgery is easy, but there are many things for his surgeon to
consider. The last time he had broken
bones, it took 6 months to heal…much longer than usual. He has full-on osteoporosis and of course
His immune system is compromised due
to his meds and also because he has hypogammaglobulinemia. He has pulmonary obstruction and restriction. And so, the surgeon is talking to his docs
and he is going to use a bone stimulator to help with bone healing. We are praying hard that his body won’t
reject nor attack the foreign objects that they are about to insert to correct
his feet, ankles, and legs.
He will have at least three days in the hospital; thank
goodness this doctor is local. He will
then need to be out of school for at least a week. The good news is the surgery is right before
spring break…the bad news is recovery is during spring break… But we are really trying to focus on the fact
that he will not lose days at school since he is so close to going over 51%
days missed at school. But Michael,
Logan, and I feel so sad for this kid.
It seems that every school break, he is struggling with something big,
making it difficult to enjoy time off.
This means that Logan and Michael will be vacationing with our friends
without us…so Parker and I welcome visitors to cheer him up. Of course, call first.
Parker will have the first set of casts that cannot get wet,
on both feet/legs for 4 weeks and he cannot bare weight on them either. Then he will get a second round of casts that
he will be able to put small amounts of weight on. He should be able to return back to school,
in a wheelchair, after spring break.
When I think back on last weekend at Camp Boggy Creek and how he danced and kept stopping due to pain, I just cannot imagine how this kid does it. But he DANCED and he was HAPPY. We love him so very much.
So here we go... on our newest journey...the journey to
maintain walking and hopefully towards less pain. Then, Parker, you can DANCE your little heart out!
Last year, after the JA Conference, I visited the
botanical gardens, and I saw this quote that spoke deeply to me…
“A flower does not compare to the flowers
around it; it simply blossoms and blooms where it is planted. “
It is very hard not to compare…As parents, we see our children alongside their peers and friends. We watch them grow together. As a parent of children who both have juvenile arthritis, we can see differences in our kids' development when "comparing" them with children their same age. We have seen them grow at different rates both physically and cognitively and in some ways through their social-emotional well being. It is really difficult to observe the struggles that our children have to endure, but I do believe that it gives them a very unique perspective on live and has caused them to be in full bloom.
This life with JA is where our family was planted…this is
where our family will bloom. And with
each new blossom we celebrate our Yeses…
2.5 years of hospital homebound, Parker is back in school.
JA is under control and so are his migraines
is walking more and using his wheelchair less
is getting ready for college
vision is restoring
won the pinewood derby at the St. Louis JA Conference
has friends who love him for him
is an amazing guitar player
is a great photographer
and I are proud parents whose family has bloomed and grown to include many
families impacted by JA.
Our JA family is one big beautiful bouquet.
I am getting so excited about this year’s Juvenile
Arthritis Conference...There are many dedicated volunteers and AF staff
working hard to make this annual event full of networking, education, and
fun. But as we worked hard this past
week planning the schedule, I was reminded that there is nothing like the
relationships that are built through these connections. These people are giving, passionate, loving,
and dedicated to working together to support families.
And I adore the theme "HOPE Grows Here"...As we
teamed together, it felt a little like we were tossing the weeds, planting the
seeds, and nourishing our souls; so that we could watch our great big JA Family
blossom and grow even more together.
JA has a way of showing us what really matters. It has taken a long time to truly feel like I
have some deep roots, outstretching branches, and a good strong footing. You see, JA is like that big storm that
bashes at one’s heart. The STORM reminds us of our reality…but with each new
family I meet and with every story shared, we not only share tears of sadness,
but tears full of laughter and joy.
balance gives us that strong footing to grow stronger, love deeper, laugh
harder. YES…it is possible to find the
joy in life and to choose to celebrate our victories great and small. For it is
HOPE that makes it feel like YES is possible …for with each small victory we
share we grow a little taller and stronger.
First we have to have HOPE, then we can champion our
Some days, LOVE takes my breath away…We feel deeply grateful
to have love in our lives. Somehow, I feel living with chronic illness makes
love oh so much richer. I have not
written much lately, I have been deep in reflection and realization…living life
and appreciating its gifts.
Our family lives in constant hope.Hope that we will see gains and
improvement.In many ways we are
constantly pushing forward with hope as our shield.And when we dare to lower that shield, we
still hold hope in our hearts; because with hope, we grow with the
possibilities.If we didn’t believe in possibilities,
how could we endure?
And yet, I must acknowledge our reality…everything we do,
we plan, we celebrate…we do with much balance; for we know that there is a
cost.I think this is the most
remarkable strength that Parker has, but with that balancing act, he has to
decide what to say yes to and what he will do to make his “yes” a reality.Let me give you a for instance…Parker wanted
nothing more than to spend time with one of his cousins who was home for the
holidays.But in order to do so, he
literally slept all day so that he could see him in the evening.He has to bank his energy, power up in a
sense, so that he can sit up in the evening to play games at a table.He knows his capacity and he must allow for
Much has happened since I last updated and once again, we
are processing our choices and next steps.The pseudo tumor and papilledema is still there but improved and holding
stable.He is still getting treatment.We are hopeful because his vision is better.
JA has been unkind to Parker's mouth...he had the last of 8 baby teeth extracted. Now we wait for them to start coming in before going back to the orthodontist. I am a little afraid to see the next bill with invisaline.
After winter break, we need to set up an appointment with
the orthopedic doc to talk about what we are going to do about Parker’s left
ankle.And recently, his pulmonology
test showed that he needs a bit more pressure to help him breathe at night but
that was easily amended on his bi-pap machine.Finally, he is going to need to start gait training in physical therapy.However, now that he is “aware” that his
walking is out of whack, he is paying more attention to walking.
On most days, Parker is walking better and his doc would
be so happy to see him swinging his arms in the halls of his school.See he had to learn to “walk correctly”.He is making school about 50-60% of the week
and we are so grateful that his teachers are working with him.This is the hugest success ever for him and
incredibly draining.He is beginning to make
new friends at school.For Michael and
I, this is the most joyful thing we have experienced in a very long time.It was so incredibly hard to see his friends
continue on to the 10th grade and for him to re-enter school after
taking a year off for his health and go back into the 9th.
The coolest thing happened last week.Parker had one of his friends over for a few
of hours.That alone was the highlight
of his break…but when the mom came to pick him up, she looked at Parker and
noticed how much shorter he was than her son.She asked if they were in the same grade.Of course, they were not anymore because his friend
went on to 10th and he was in 9th…I said it was due to
medical that he was held backbut they
are the same age, thinking she must know about Parker’s JA…but she looked
confused.I said, oh, I am sure your son
can catch you up to speed when you get home.But in that moment, I was completely overjoyed…I wanted to yell…”Do you
know you have the coolest son ever!Do
you know that he is the definition of a true friend?Do you know that he sees my son for the cool
kid that he is and the fact that you don’t even know that my son has major
health issues is the best gift I could have received this year?!”I knew that this friend of Parker’s was
pretty amazing…but I love this mom for raising her boy to see “people”.
So we did try the growth hormone for Parker.It was a daily shot and with each day he
injected it, the worse and worse his JA got.He got rashes, swelling, fever, and intense pain.By day six, it was so incredible that we were
advised to stop it.Many asked if he
really needed it anyway…well, yes…yes he does…his labs show he is not making
growth hormone and he is not going into puberty.His levels are whacked.So yes, he needs it.We never make medication decisions
lightly.We weigh the pros and cons and
then try to make the best choices with much prayer for where he is at in this
moment in time.We have suspended the
growth hormone and had to take Parker in for an infusion and even that was
tricky because we didn’t want to make his pseudo tumor and papilledema
worsen.Also, with this last flare, his
adrenal glands went wacky again.So,
once again, we had to increase the hydrocortisone.I am happy to report, that after 3 weeks of
intense pain, Parker seems to be on the down-side of the flare.Now he seems to have picked up a bit of a
cold though…he got his infusion of his immunoglobulin today and so we are
hoping that helps.
The pain management doc didn’t really like this last
flare at all.He is pushing us a bit to proceed
with the nerve ablations that we have been putting off in his neck.We decided to wait because Parker needed a
true “winter break” with NO medical appointments.The doc also talked to us about a new
procedure that he really thinks will help Parker.It involves a remote control battery that can
be up to 3 feet away that Parker would use when in pain.We are still processing that option, however,
Parker is quite intrigued.
We had special guests for Christmas this year.Michael’s cousin and her husband came to
Naples for the month of December, so we had them over for Christmas. This was our first time meeting. It was so fun to listen to them reminiscing about
their childhood.She even made some of
grandma’s cookies.It was all very sweet
to witness.But the most incredible
thing happened…her husband shared that he works for a very large pharmaceutical
company as a biochemical researcher.Here I was meeting this delightful man who was super sweet AND an
incredible wealth of information.We had
quite the conversation about biologic drugs, immunology and autoimmune diseases.I got such an education and he knew all the
drugs that Parker has been on and how they work.It was such a great discussion because this
is so hard to explain to others who are not immersed in this vocabulary.I was so thankful to have time with him and
his brilliant mind.He also talked quite
a bit to Logan about going into medicine.
It was one of those moments in time when I felt like all was right…in
balance…and we were all exactly where we were supposed to be.
This life we lead is with much balance, hope, and
prayer.We never know what is around the
corner.We can only live in today’s
moments and be joyful for the gift of love that surrounds us.
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.
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.
One challenge I think I might face in reaching my life goals
is surgery. My goal in life is to “make my arthritis hurt less”.So, one step I might have to take to get
there is having ankle surgery. My left ankle was the first part of my body that
began to show signs of rheumatoid arthritis. My ankle has been through a lot
and I have tried many things to fix it. First, I got better shoes (Asics). Then,
I got ankle splints. And now I have custom shoe orthotics. My left ankle is so
bad now that when I stand, my foot turns in and now my ankle nearly touches the
ground. While “surgery” is a challenge that I have to face, it is also a
Another challenge I might face on my way to reaching my
goal is friends. At the time I’m writing this my social life isn’t the greatest,
but I fear it will get worse soon if I don’t get a handle on my arthritis. I am
scared to go to school in my wheelchair because what people will think of me. I
am scared to miss work because people always say I’m lucky; but they don’t get that
I still have to make up all the work by myself without a teacher. Worst of all,
I’m scared of being absent because when I come back kids say mean things like
“you are in this class still” or “why are you here”. And if they don’t do that,
they say mean things when I sit down like “you don’t belong here” or “get out
of my seat”. That kind of stuff really
gets to me, because I just want to make friends. And what really sucks is that
I can’t do anything about this.
The third and final thing I will talk about is myself. Yes
I said myself. I think I’m my own biggest challenge/obstacle. Every day I wake
up not wanting to go on, not wanting to fight the arthritis any more. Every
single day I am in pain. Every day I’m fatigued and just don’t want to do
anything. But I have one solution, one reason to keep on fighting, and that is
my family. I have an amazing brother who cares about me and loves me. I have an
amazing dad who plays with me and watches TV with me. And I have the most
wonderful mom in the world. My mom comes to every doctor’s appointment, every
surgery, every infusion. My awesome mom even learned to use my port, give me
shots, and even set up my infusion so that I can do it at home instead of
always going to the hospital. Without them I don’t know what I’d do. I love my
family with all of my heart, ALL OF IT.