Right Foot, Left Foot..No Good Feet

We have this kid who never gives up no matter what…Parker’s body doesn’t seem to have the same drive as his spirit does.  All my hopes and prayers are for his continued strength and healing.  For the past three weeks it seems that he has been having more and more increased pain in his back, neck, and jaws.  We have adjusted meds but it is not helping.

Tomorrow we are going up to Shands Hospital.  He has a late set of MRIs for his jaw and SI-joints in his lower back.  Back in November his SI joint MRI revealed huge amounts of swelling.  He had them injected with cortisone and has been taking meds that target this area, but the pain is intensifying.  I can’t remember the last time he hasn’t woken in the middle of the night due to pain.

And back in 2011, he had jaw issues and there were some issues on that MRI but the jaw has been fairly quiet until now.  So his doc is concerned that one of his overlapping conditions might be contributing to these flares since it is not common to have SI involvement in kiddos with systemic JA.  I actually giggle when I hear “not common”…like a nervous laugh…because nothing seems common with Parker.

Today a dear friend shared with me that her heart broke seeing Parker struggle through the family walk kick-off last weekend.  He came in his wheelchair and rested his head on the table as he slept through the entire event. Then, he asked to leave without even lunch nor going through the museum.  She said she always sees Parker smiling but he wasn’t last Saturday…and it so choked me up.  He wants to be present and a part of social interactions but he just cannot seem to maintain. 

He had a friend over this past weekend to play video games (a great pain distraction by the way) and after less than an hour he came out and said he just can’t do it anymore and needed to rest.  It is clear to Michael and I that something is not right and we are so fearful of what the labs and MRI will show.  The doc has said to pack our bags because she will likely need to admit him on Friday. 

The last few rounds of PT have been literally torture for him…and yet he doesn’t give up as tears stream out the corners of his eyes.  The PT checked his right foot (the one that he didn’t have this last surgery on) and he was manipulating it in a way it should not move and then advised me to call the doc because it could mean that the cadaver bone that was put in his foot back in March 2015 may have also been rejected and absorbed into the body because it was feeling like it wasn’t’ there.  It just breaks my heart beyond words at the thought that Parker might have to get his right foot/ankle fused too.  So we asked the doc to also set up an x-ray for tomorrow since we will be at radiology anyway. 

I am literally choking back tears for my kiddo.  I pray for understanding where there is no way I can comprehend what is happening over and over to my sweet kid.  This disease has literally taken his childhood from him and he knows it.  And yet, somehow he carries himself around each day on those horrible feet and ankles sharing his smile with the world and comforting others.

We will continue to fight with all our might for him and for funding for a cure.  We must because it is the one positive thing we can do.  Please know that we so appreciate every text, the sweet cards of encouragement many of you send to Parker, and every single penny donated to his walk team.  There are so many kids that need all of our support.

I will continue to update on Facebook as I can this weekend.  And I will try to update the blog too to keep everyone up to speed.  Just please continue to shower us with prayers, love, hope, and strength.

 And if you want to help, just click on the “want to help” tab at the top of our blog.  Much gratitude and love.

Choices That No Child Should Ever Have to Make

I will sleep good tonight…what a week.  I could barely drag myself through work this afternoon…and before I retire for the evening I just want to update everyone on our Purple Playa.  He is the strongest individual I know.  He has endured so much in his 14 years and I marvel every day at his ability to push, encourage others, and show so much love.

He is once again faced with such challenges and difficult choices.  Today, we officially withdrew him from school.  After having a conversation with his doctor, we felt that this was the best decision for where he is at and he is going to concentrate on his health.  This was as much his decision as it was ours and the doctor’s.  But even though this was the choice he made…it doesn’t make it easy.  He is, of course, keenly aware that he will not graduate with his classmates and will be re-entering the ninth grade next year.  He tried with all his might to go back to school this year, but his systemic disease has just been too hard on him and once again he is absent more than he is present.

This week he started acupuncture.  It was quite painful when the doctor put needles in his ankles and we thought he was going to give it up.  But then Parker suggested to maybe try a different location since his ankles are his worst joints.  The doctor, who is both an acupuncturist and pediatrician, was so thrilled that he was willing to try again.  She then went into his back and also added electric current and heat and he really liked it.  We even noticed that he seemed to have a little more energy that night and next day.  He will continue to get weekly acupuncture and we will see how it goes, be we are hopeful that it will help his pain.

Sometimes, I wonder if the Rilonacept is working well enough anymore, but it has been the best biologic he has tried.  As we are adjusting and reducing some of his meds, it has been quite hard on him.  He has so much pain and is incredibly fatigued.  He is also having his rashes and fevers again, a classic systemic JA symptom.  I just hate how this disease seems to outsmart the drugs.  We have also increased his PT from once a week to twice a week.  And we hope to continue with some auqua therapy, if we can get in a heated pool with the winter months coming up.  We are still researching heating our pool or getting a hot tub.  And he is periodically going to counseling.  The counselor has a gift for helping him process all that he is going through.

We are considering bringing him to NIH (National Institute for Health) in D.C.  We discussed this a bit with his doctor and it feels like this is possibly the next best option.  However, with the government shut down, there is little we can do right now.
 

We are doing the best we can to support our “purple playa” and I know he so appreciates everyone’s encouragement.   Tomorrow is “World Arthritis Day”!  Please share with someone that children endure this disease and for Parker, it is not just in his joints, but it also tries to attack his internal organs.  We continue to pound at JA and we continue to hope that one day, he will be without pain.

Birds of a Feather Flock Together

Today I was asked, “How do you handle taking care of a son with chronic illness, while you have chronic autoimmune issues yourself?”  Of course I answered with the courtesy that I can usually muster up for such incredibly difficult questions…”I just try to take it one day at a time…and cherish each and every moment.”  But now as the day is coming to an end…I don’t think I am “handing it” very well.  How does one handle such heartache…besides praying and trying to cherish life.

My body literally tremors these days.   Yesterday, I was told that it is due to my two newest diagnoses.  I have both Graves Disease AND Hashimoto’s Disease.  Of course I asked the endocrinologist how in the world I could have both since they are pretty much opposite of each other…Graves with hyperthyroidism and Hashimoto’s with hypothyroidism.  She said that it happens and the two diseases have probably been battling inside my body for quite some time and Graves is currently in the lead.  No wonder I feel so horrible…now for those of you who have seen me lately, yes, I hide it well…but let me tell you …the way I feel inside is a complete battle.  My heart rate is way rapid and also irregular at times.  I am sweating like crazy.  My hands and legs have been having tremors and now my head also tremors off and on.  I am incredibly fatigued.  It is causing my glucose to be high and I also happen to be anemic.  My eyes have had some issues too with floaters, blurriness, blacking out in one eye, and muscle pain.  Walking has also become more difficult.  My muscles are quite weak.  And I am having trouble swallowing, difficulty breathing at night, and difficulty with projecting my voice and my RA is flaring…likely all due to the battle in my body. 

The doctor spent quite a lot of time with me and my husband explaining that my immune system is very compromised and that I am very likely to have more autoimmune issues down the road; especially since I already have multiple autoimmune diseases (severe allergies, asthma, endometriosis, rheumatoid arthritis, Raynaud’s).  She was concerned but felt that she could help me.  So that was very reassuring.  I am now proceeding with a radioactive thyroid uptake over a 24 hour period.  So I go in for the first scan…then back 2 hours later, then 6 hours later, and again 24 hours later.  The pulmonologist and the endocrinologist both think that my thyroid is now pressing on my esophagus and that could be causing the swallowing and breathing issues.   Once we get results, then we can move forward.

And as I read up on my newest of autoimmune diseases today, I ran across a reference to autoimmune diseases as “birds of a feather flock together”.  I read it out loud to my husband and we both just laughed.  So how do I take care of me….I have tried several times to take time off from work for “me” only to have something come up that needed my immediate attention…and I did’t get that “me” time.  Well, tomorrow is going to finally be my “me” day (after I get more labs in the morning).   And I am looking forward to it!

 

Our Most Valuable “Playa”, Parker: Thankfulness Sums It Up!



OUR STRONG KIDDO!
Thanks Ashlynn for
his very own Boggy M&M!



A quick update to get all of you up to speed on the Purple Playas’ most valuable “playa”:  Parker!  We are so incredibly fortunate to have a team of doctors, nurses, and medical office staff that powers on right along-side of us!  Through our appeals and persistence, Parker’s study drug, rilonacept, was approved through April.  The office manager said she thinks he is the first kid in Florida to get this approved.  Maybe now other insurance companies will jump on board and get this for the many others who also need it!  Truly the miracle we were hoping for!  We were so concerned about going backwards but now we can continue to move forward!

Another great piece of news is that this Friday will be his last overnight stay at the hospital for his IVIG infusion.  No he is not discontinuing it but rather he will be getting it at home weekly and a little bit differently (not through his port or IV).  The version he is getting is called Heizentra.  If I am understanding it all correctly, this is why:  by getting it weekly in a more concentrated but slower absorbing manner he will have less side effects and hopefully also better results.  This is because there will be a more constant level in his system.  There will be 3 probes (little needles) placed in his stomach and hooked to a small pump.  It will run for 1.5 hours each week and he can do other things while it is pumping in (tele-class, TV, Xbox…).  It also means less hospital stays, road trips to the hospital, and hopefully no more blasting headaches from the med.  He will also learn how to do it himself.   If we can get his levels up, he will also be able to be out and about without so much worry that he could easily catch something and land in the hospital.  Way huge!  We are very excited about this, especially knowing now that he is likely to be on this for life.  This will give him some normalcy back and empower him.  And we will all get to sleep in our own beds more often J!

We appreciate everyone who has rallied around us and supported us during all of this uncertainty.  We are incredibly thankful for your prayers, thoughts, and positive energy.  We know that Parker is an incredible and valuable “playa” and we are so happy you all are part of the Purple Playas Team!

Trying Not to Let Fear Take Hold...Trusting All Will Be OK

Fear can seem to momentarily paralyze us…Michael and I feel like we have been hit hard in our gut and the wind has been knocked out of us.  The last few weeks have been tough to digest.  Parker has seen progress on the RAPPORT study and for that we are incredibly thankful.  However, he is not doing as well as the other children on the study and we have seen the return of some classic systemic JA symptoms.  But today, it was made official… we cannot get the drug approved for continued use after the study and next Friday is his LAST day of the study. 

I broke the news to Parker and he totally withdrew and told me to leave him alone.  So I honored his request…as hard as it was, because this was not his typical reaction to bad news…  About 40 minutes later, one of his hospital homebound teleclasses started and when the teacher asked him how he was doing (like she does with each student during role call), he could barely squeak out “not too good”.  She said he could just listen today.  He said “ok”, muted his mic, and burst into tears.  All I could do was hug him…

Even before he voiced his thoughts, I knew what he was thinking.  He is scared of regressing even more.  He is scared he will have to go back to multiple biologics.  He is scared it will attack his lungs or heart again and he will be hospitalized.  He is scared he will be back on 2 infusions a day of kineret.  The day that we had his Arthritis Foundation Walk (May 5) was quite the celebration because that was the last night of his kineret infusion.  That night we made about a 10 minute video in case other families wanted to see what our twice a day routine entailed.  

He has been through so much such then….

During our last visit to the ped rheumy, we also had confirmation that he does have hypogammaglobulinemia and it is NOT due to his use of biologics but his messed up immune system and we were told he would probably need IVIG infusions for the rest of his life.  She also shared that she really feels he also has psoriatic arthritis in conjunction with is systemic on-set JA and all the other overlapping stuff.  And although he has been back on IVIG, his numbers are not increasing like she would like them to.   It is incredibly frustrating and concerning.

We are processing a lot right now.  Michael is coming with me on his next overnight infusion of IVIG this week, so we can talk about next steps and try to make quick decisions.  We are trusting all will be ok and trying not to let fear take hold of us.

Living While …..Waiting….Always Waiting

This school year has been one of much optimism, but our optimism has been shaped into “realism”.  We have pushed hard to keep Parker IN his middle school because with every new drug (and there have been many) we held on to hope that “any day now, things will get better”… and in moments of time, some things get better, as if to tease us of the possibilities.  Parker becomes so hopeful, rejuvenated, and motivated with every glimmer of hope for better days.  And let’s be totally honest, when it then doesn’t work, the entire family is deflated once again.  It is very difficult to explain this phenomena that keeps happening over and over. 

When we started this journey over 4 years ago, we just wanted an “answer” because we really felt that an answer would lead us to solutions.  And we felt like we would be better able to not only support Parker’s medical needs but also his educational needs.  Well, for 2.5 years we have known what Parker “has”…We STILL don’t know how to best support his educational needs and I feel like so much rides on the RAPPORT study that he is current on.

This disease is so complex.  It’s difficult to comprehend what could happen, while at the same time pushing to maintain optimism, motivation, and faith that it will get better.  We don’t make “promises” anymore around drugs…we don’t make plans without a back-up plan and we write in pencil on our calendar…we don’t expect huge gains….BUT we do continue to hope the cure will come; we do continue to make plans and hope we can follow through and that others will understand when we can’t; and we do push for tiny gains and celebrate successes because the small bits of progress are huge for Parker!

Parker has a huge powerful energy about him.  We really believe that his strength is unimaginable for some to even begin to comprehend.  And he is a great illusionist… he is engaging and smart and puts forth so much love …and he fools people in thinking he is ok “when he looks so good”.  And we are extremely proud of him because he does rise; he does push on; and yet he has had to learn to accept that his body does not cooperate with what he would like it to do…at least not yet…

I say all this because we want people to learn and to really understand…but I am beginning to believe that it is impossible to totally understand systemic on-set juvenile arthritis…shoot…doctors are still trying to “understand” it.  Here is what we do understand…without proper treatment, systemic JA:

·         causes incredible relentless fatigue

·         produces intense pain

·         causes oligo or polyarticular arthritis:  joint swelling is in every joint for our son with heat and redness (Parker has poly)

·         induces fevers

·         brings on rashes

·         causes pleurisy (swelling of the lung lining)

·         irritates the lining of the stomach and causes gastritis (swelling of the stomach lining)

·         causes pericardial effusion (swelling of the heart lining)

·         enlarges the lymph nodes (we learned there are even lymph nodes near the stomach)

·         causes erosion and joint narrowing

·         results in osteopenia

·         causes anemia

·         causes immune issues

·         stunts growth

·         causes thrombocytosis (increased blood platelets)

·         causes hyogammaglobulinaemia (decrease amount of immunoglobulins in the blood and can cause higher susceptibility to getting infections)

·         causes fibrinogen levels to be off (this can affect coagulation of blood)

How do we know this?  Because we have to know this… Parker has experienced all of this and more…because he also has overlap syndrome of:

·         vasculitis

·         raynaud’s (cold hands and feet that turn purple, red, and white)

·         myositis (weak muscles)

·         psoriatic features

We also know that sJA can cause issues with pretty much any organ in the entire body and many have issues with an enlarged spleen (our son does not have this…wahoo).  And in two thirds of the deaths that happen in children with JIA, they are with children who have systemic JIA (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html)

Parker is living…living and fighting this damn disease that is trying to over-take him, but he is fighting hard to stop it.  Parker’s voice was heard when he said he wanted to do the RAPPORT study.  At first, my husband and I were not going to do it because we had some issues with our insurance, but after Parker’s last hospital stay, he is the one who re-initiated the discussion around the study.  At this point, Parker was on 3 biologics (actemra, Enbrel, with a dose of remicade), along with IVIG infusions.  Not to mention the multitude of other drugs to control this disease (pain meds, anti-inflammatory meds, meds for meds, chemo, steroids, blah blah blah).  And the steroids are possibly his saving grace right now…because the “study drug” is not working (or he is on placebo).  One of our main goals has been to get him off steroids…he has been on them for 2.5 years…way longer than we ever expected. 

So with regards to school, Parker has been in hospital homebound because he barely made it to school first semester.  Oh, and first semester he was only on a part time school status with 2 classes on-line.  It took him all school year to complete the first semester of both of those on-line classes and he only has one test and his exam left.  As of today, he completed all of his hospital homebound exams and he is officially done with second semester of 7^th grade.  All year, he has been playing major catch up with school.  We feel like next school year totally rides on this study and if it works.  Needless to say, we have re-initiated hospital homebound for next year just in case.  Like I said, we are becoming “realists”...yes, me, who fought to keep him in school is realizing…but we must concentrate on helping him feel better because we don’t even want to think of what “could happen”…

So we are living…coping….comforting Parker…and constantly praying…and here we are again, waiting…waiting for 5 weeks to pass since stopping biologics and being ensured he will get the study drug…in two more days we know for certain Parker will get the real trial drug.  We are unsure if he has been getting placebo, or as Parker says “if this is the real drug, it sucks”.   Need I say more…

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”...as 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…

William's Wish broadcast

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

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)

Heprin

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 5^th.  We will be the sea of 50 plus people in purple!

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

Join US for the AF Walk May 5th and/or Make a secured donation:  http://2012awtampa.kintera.org/faf/search/searchTeamPart.asp?ievent=1002436&lis=0&kntae1002436=22CB076514A4413A842EFBD89E814BCB&supId=0&team=4910470&cj=Y