So Many Thoughts…

As a family, we have chosen to openly share our journey with juvenile arthritis.  This was both a difficult decision and an easy decision.  Difficult because in some ways it leaves us vulnerable and somewhat open to “judgments” and “opinions”; however, we know there is a great need for awareness and advocacy.  Many are often shocked when I tell them that I have rheumatoid arthritis because I am “too young”…you can imagine their greater shock when they find out that our children have JA.

Each family that is impacted by JA has their own story, their own coping strategies, their own experiences…but we all have one thing very much in common…we all have a child whose life is impacted by an autoimmune disease.  All of our children are “children first”…they have dreams of children…they want friends; they need their education; they long to play.  As parents we try to provide them with the best opportunities we possibly can between therapies, hospital visits, doctor appointments, procedures, infusions, etc.

Lately, I have been pondering how perceptions are shaped by our experiences.  How we perceive situations based on our “view” will either allow us to take on another’s perspective or not.  There are moments when either my husband or I have been misunderstood; and we have also witness our children being misunderstood.  For instance, during our last hospital stay one might say “Parker was not very nice or he was not coping well” and in that moment probably not.  However, what was not immediately apparent were all the circumstances surrounding that situation.  It takes great skill to look at the bigger picture and try to understand the whole situation and to understand his perspective.  And please don’t misunderstand me…we still asked him to reflect on his actions and apologize.  When others take the time to truly understand, that is when the miracles have the ability to happen.  I do believe that social-emotional support is just as important as the medical treatment.

I know we are not perfect…no one is…I know we are making some mistakes along the way…that is our opportunity to learn.  And I am sure we will continue to make mistakes just as I am sure we will continue to learn.  We are dealing with an autoimmune disease umbrella that has limited answers and much uncertainty.

We have learned many lessons through this disease and our appreciation for life is greater.  We know that simplicity is golden.  We enjoy the breeze in the air a little more.  We feel the depth of love with deeper affection.  We cherish naps full of dreams.  We cuddle just because.  We celebrate laughter often, even when it’s through a few tears.

Do I wish none of this had ever happened?  Sometimes…we have felt and witnessed great anger, sadness, and pain.  But sometimes I think, but then we would not have met some of the most amazing individuals on this planet…who just show love without having to be asked…The human spirit is quite remarkable.

We want to tell everyone thank you for joining us in this journey, for supporting us during our fundraising and walks, for listening, for celebrating with us and for cheering us on.  We advocate for our family and all the children with autoimmune diseases in hopes that a cure will come for each and every child.

We are thankful that we have a support network that is willing to walk alongside of us…even when we don’t know where we are going.  We appreciate your willingness to simply just “be” with us.  Our family pulls profound inspiration from your support and together we are stronger…

Much love from the Lentini family (A.K.A. The Purple Playas)

HOME with Happiness in Our Hearts

Ever since Parker’s last hospital stay, his health has been a struggle.  We literally had to call him in sick to hospital/homebound teleclasses for the last month.  Thank goodness they were able to freeze his grades.  For the pass month, he has complained that his bones hurt and it feels like they are going to break and he has slept the days away.  We could barely wake him to take meds and eat.

We kept thinking he would bounce back because we would give him the rilonacept shot each week and he would be a bit better for a day or two…but then it would just continue to get worse and worse.  He was taking daily Epson baths and crawling back into bed.  He wasn’t even up for playing his Xbox (this is huge).

We kept trying to encourage him to get up and succeeded a few times only to see him make it to the couch and fall asleep again.  As I expressed to his doctors, this was really starting to concern me.  As I got to thinking (sometimes thinking is dangerous), I realized that it had been 9 months since he started rilonacept and I began to fear the worst…another biologic failing.  All other biologics that we had tried failed between 6 and 9 months.  And the last time he was on the verge of MAS (macrophage activation syndrome – a very dangerous complication that some kids with systemic on-set JA get), he acted similar.  So as a mom and dad, we were quite concerned about how he was presenting and behaving.  So of course, I contacted his primary pediatric rheumatologist and we were advised to come to the hospital. 

They did blood work, an MRI of his hips/groin, and meds were started.  That first night, I did lots of thinking (this time, not so dangerous…).  I realized that he has gotten worse since adding one of his two newest meds, prograf and baclofen.  So, the next day I asked if flushing and being extremely lethargic were side effects of either of his new meds.  Yes!  Prograf causes flushing and the baclofen could cause lethargy.  Then, while reviewing his labs and MRI results, we got marvelous news.  Our prayers had been answered…the rilonacept and hizentra are definitely working.  All his lab numbers look better…way better and his hips also looked good.  The meds are doing what we had hoped and are stopping this darn JA from progressing!  After further discussion, we also realized that Parker could not handle the baclofen at the dose he was at and also it shouldn’t be given with one of his other meds, which we have since discontinued.  We are already seeing a huge difference.  His is AWAKE, interacting, playing, and chitter chattering up a storm.

His doc also told us that she is re-checking his vitamin D.  Those results should come in tomorrow.  When children have extreme D deficiency it can literally feel like their bones are going to break.  So if that is the case, we simply need to increase his D.  Another great solution!  We are so happy to be home and to see our Parker looking better and feeling more alert.

Now we can focus on getting him better and better, getting back on track with school, having some fun and getting ready for the upcoming walk!  Thank you to all of you who continue to cheer Parker on and who send us positive vibes, prayers, and a giggle from time to time.  We are so fortunate to be surrounded by love.

Link to Parker's Purple Playas Walk Page:  http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=A84F7AF1A0954307A54209E85C953A06&supId=345360575

We Need Our Friends and Family

Dear Friends and Family~

We have had an incredibly hard several weeks…Parker seems to be struggling again.  The good news is that he does not have interstitial lung disease.  This is pretty huge.  The team of docs and us were pretty concerned about this because it is irreversible.  We embrace and celebrate this amazing news.

We also found out last week that Parker now has osteoporosis.  This is not only due to his disease activity but also because of the treatment.  As parents we make very difficult choices and sometimes the side effects are the lesser of the evils that we face.  His doc has already begun treating the osteoporosis with a once-a-year infusion of Reclast.  This would explain why Parker has had some difficulty with the wrist and thumb he broke more than a year again. 

Parker is still having lung obstruction and restriction.  Last week he was fitted for a c-pap mask to prepare for his overnight sleep study.  There is some concern that he may be having difficulty breathing at night.  This would certainly explain why he has been sleeping more than he is awake.  The overnight study is scheduled for April but we are also on the wait list for cancellations.

Parker’s vision seems to be shifting and becoming blurred.  We have an appointment with his ophthalmologist to check this too.

So as you can see, we have some new hurtles to overcome.  This week we have just been trying to keep him out of the hospital.  His symptoms have spiked…rashes, fevers, swelling, extreme fatigue, muscle weakness, and way intense pain.  He has missed the entire week of his hospital homebound classes, had to be excused from FCAT testing, and hasn’t even played Xbox or texted his friends.  His doc suggested we admit him on Friday but he really didn’t want to go.  Who could blame him…so we decided to see how this weekend goes since he was getting his treatment of the Rilonacept shot and his infusion of Hizentra.  Well, the good news is he got on the Xbox with dad for a bit last night.  And even though it totally wiped him out again, he had a good time.  He needed to have some FUN!

He woke up briefly this morn to take meds and to tell me to pack just in case.  Yes, he feels like we are going to have to go up to the hospital.

I really wanted to update everyone before we might have to make this trip up there but also to share why we fight so hard against this disease and are constantly trying to raise funds and awareness.  There is a saying that many of us who deal with chronic illness use….”don’t let the disease define you”…  We try desperately not to do this, but this disease has RE-defined who our son is in some ways…but it has also enhanced the goodness and kindness in him.  That is one of the major gifts that come from great struggles.  The issue is we cannot “escape” this disease….there are constant “reminders” of its existence in our life.  Every single week we have some sort of medical appointment or therapy.  Daily, there are meds, injections, infusions, etc.  And let’s face it, things are not the same in our family…some people have drifted out of our lives (we just can’t keep up with them…) and others have drifted into our lives.

We choose to celebrate the good that has come from this disease.  We have people in our lives that are “with us” because they truly LOVE us!  This is the most amazing gift and powers us forward.  Our children share that love through their actions and for that we are incredibly proud.

So we humbly but shamelessly ask for your continued support.  We need people like you in our lives.  We need people to continue raising awareness so our children have a voice and to raise funds to support research for a cure.  But I also want to share that funds are not only used for research…they are also used for other amazing things that without support wouldn’t be possible.  Here is where your dollars go:

Dancing at Camp

Camp Boggy Creek- “A Serious Fun Camp” that hosts JA Family weekends and summer camp for our children.  This camp gives us an opportunity to meet others whose lives are touched by JA but more importantly, it gives are children the opportunity for safe, medically supported fun.  Kids just being kids.  Click here to read more about Camp Boggy Creek
 

Connect events – the Arthritis Foundation (AF) hosts opportunities for individuals and families to learn and connect.  Click here to read more about Florida AF Happenings

Our Children Together

JA Family Fun Days – A group of JA families have initiated hosting events around the state each month to give families the opportunity to network and meet each other.  The AF helps with announcements and some of the food costs.

Florida’s JA Families Arthritis Foundation Facebook Page – a place to announce activities and connect with others.  Click here to connect to the Fl JA Families AF Facebook Page

Connecting at Conference

The National Juvenile Arthritis Conference – every year our state helps fund families’ travel and registration costs to attend this conference where the entire family learns more about JA, research, advocacy, and networking.  Many medical professionals volunteer their time to come and present and to talk with families about JA.  Children have their own classes and fun while adults are in their sessions.  Click here to read more about the JA Conference


Dads



JA Advocacy Summits – The AF sends families to both Tallahassee and Washington, D.C. to advocate and raise awareness.  Click here for more info on the JA Summit

The kids with JA directly impact our hearts, but there are also many adults with autoimmune issues/rheumatoid arthritis and I am one of them.

These are just some of the reasons why Parker’s Purple Playas participate in the annual AF Spring Walk.  So please consider supporting us.  You can join our team for free, help raise funds, and/or simply make a donation.  Here is the direct link to Parker’s page:  http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=954C041C14F748CE90489BEEC614B979&supId=345360575

We continually thank you for your support and send each of you much love.

Mom and Dad Powering on to Find a CURE

LOVE Pushes HOPE Higher and Higher



Waiting for Doc



For the last two and a half years we have made our 2.5 hour drive to the hospital every two weeks for treatment for Parker.  We are moving into 2013 with a much needed break from this schedule along with much hope for continued improvement.  Most of Parker’s treatment is at home now and we don’t have to go back to the hospital as frequent…we now go every 3 months.   In reflecting on this last year, a tremendous amount has happened.  With every hurtle we have continued with strength to take the leap of faith needed to get us to the place we need to be for our family.  Of course, Parker has been incredibly strong through all of this, but Logan has been just as strong, if not stronger.  As adults, Michael and I have tried to maintain day-to-day needs…but so has Logan. 



Logan



Logan's eyes get like this with the really bad migraines.



Logan has his own health issues with his relentless migraines this year.  This is a condition he has had since he was 5 years old and we have a very strong history of migraines in our family, but as Logan has entered his mid-teen years they have been more difficult to manage.   These migraines have not only impacted his health, but also his social life, education and stamina.  He continues to overcome and it is remarkable that he pushes forward while also supporting his brother and trying to create a balance in his life.  We are proud of the young man that he has become and his future has much promise and I am looking forward to the days to come.



Christmas 2012



We also want to celebrate Parker’s progress…this year pushed our hope higher and higher.  This year Parker has been on multiple biologic drugs to combat against juvenile arthritis.  I know that these drug names mean little to the general public (except maybe “Enbrel”) but bear with me as I process this…ready…he has been on actemra, then actemra with Enbrel and soon after he also began IVIG infusions (IVIG is a blood plasma to treat hypogammaglubulinemia and is not a biologic).  Then he took actemra with Enbrel and a round of remicaide, then he needed to stop all these (including IVIG) in order to proceed with the “study drug’s wash out process”.  During the wash-out of these previous biologics we had to up his steroids and begin the biologic kineret (twice a day) because he could take kineret up to 4 days prior to starting the RAPPORT study looking at the effects of the biologic rilanocept on systemic on-set juvenile arthritis.

Soon after starting the study, Parker’s health started to decline…yes, we are pretty darn certain he got the placebo and not the rilonacept.  Parker landed in the hospital in tremendous pain, swelling and pericardial effusion.  But looking back on all this, Parker has no regrets.  He knows he is playing a small role in impacting the future for children with JA.  Our family went into this last year knowing it was going to be a tough one.  We decided to put school to the side and be ok with hospital homebound while we worked on supporting Parker’s health.  We now feel like we are on the flip side…  What we have learned is that with each step forward…we are moving forward at a slow and steady pace…and although the journey may feel endless at times, we have felt tremendous forward propelling LOVE.



Surprise care package from Sloans via the infusion room nurses!



Thank you Ky for my special Parker Snowman!



This love has come from very unexpected places through very caring actions.  We know people lead busy lives with their own struggles and we are thankful for each and every person who has paused to show us love through your calls, emails, cards, text messages, and Facebook posts.  We are also incredibly appreciative for the actions people have taken…hugs, help with picking up Logan, meal prep/restaurant gift cards, doing laundry/cleaning, dropping by to say hi, leaving notes on the windshield, donations to the AF walk and High-5-Club, help to maintain work, comments on our blog, hospital visits, surprise packages, joining our walk team, helping fund raise, willingness to drive across the state to help us access an “out of stock” med, listening, encouraging, and validating our feelings.

We also want to thank the medical staff supporting Parker.  We know we are still on this journey…  Thank you for your passion in this field, your work is unbelievably difficult and we need more people like you in this world.  And I am not only referring to the doctors and nurses, but also all of the people behind the scenes who process the relentless amount of paperwork and insurance “overrides” because the insurance companies are not always open and willing to charter in untraveled territory.  Thank God that Parker was the first child in the state of Florida to get approval for the study drug once the study ended.  Multiple biologics failed him…this is the first drug that has had enough of an impact on him that we are witnessing some of the “old Parker” return.  When a devastating chronic illness impacts a family, you begin to try to create “new norms” and you work hard to find happiness in the little moments and pretend a bit that they are as wonderful, if not better than the happiness you experienced prior to the “disease” entering your life.  And in some ways they are…because they are felt with an increased intensity…emotional and physical pain does that to a person… But oh the JOY and renewed hope we feel with our “old Parker’s” return.  

Turning in wheelchair wheels for
skateboard wheels.

Logan and Parker are experiencing their brotherly passions again:  quirky fun, chitter chatter, planning events again, gaming together, and skateboarding…yes, skateboarding!  Logan spent his own money this Christmas to refurbish Parker’s board to make it safer for him.  He got him better wheels with a better center of gravity, bushings, bearing spacer, and stronger grip tape. 

Love is totally rolling this pair forward… and Michael and I love witnessing this…Here’s to continued happiness in the New Year.

Look Doc, I am working my stiff ankles!