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!

From the Voices of Families….

Recently I asked families of children with Juvenile Arthritis, if there was anything they wanted the general public to know about JA what would it be…This list below is a paraphrased summary of their very heartfelt responses.  Just a window into the lives we live, thoughts we have, and strength our children possess.  From the voices of families…

·         Juvenile Arthritis is not an old person’s disease, it’s autoimmune

·         It affects internal organs, not just joints

·         Our children are not “fine”, just because you look good or are smiling

·         It hurts, even when smiling

·         It is more than just hurting joints

·         It affect joints AND muscles, skin, internal organs, personality, mood, emotions, and engagement/activities with others

·         It can be as bad as cancer…just because my child is not bald doesn’t mean he/she is not suffering

·         Kids do not always grow out of it when adults

·         Kids’s with JA can be as severe and worse than adults’ RA

·         There is no cure

·         It is not an old person's disease - it is an autoimmune disease!

·         it affects more than our children's "health"...it affects school, their relationships, their play, their quality of life...

·         it can attack anyone, at any time and we don’t know why

·         during one hour of the day they can look fine, and an hour late it can hit them hard

·         it can blind, cause deformities, and even kill

·         it does not discriminate

·         We also don’t know what these drugs will do to their bodies down the road.  Will they be able to have children?

·         It affects not only their health.  It impacts their school, relationships, play, and quality of life

·         Praying for relief so my child can live a normal life…for some this comes, for others it takes much longer, and yet others continue to have bumps in the road and struggle.

·         If the cure was spices, vitamins, and other crazy mixtures, all these children would already be cured

·         The roller coaster ride is never ending…bad days, good, days, emotions, doctors, stress, expenses, meds, remission, active disease, medicated remission, …and yet life continues to go on and we try to enjoy life and a happy childhood.

·         We do everything we can to let our children be children

·         It is not the same as grandpa’s arthritis, which is osteo….this is autoimmune and my kids may be cute but they hurt BIG time.

·         When people think our kids are fine and question our requests for prayers because they look fine, it is hurtful.

·         Brothers and sisters become fearful, emotional, and wonder if they too will get this.

·         The amount of chemo our kids use over their life-time is more than some cancer patients

·         You see my child smiling…I see my child when he/she cries, gets blood work, can’t sleep, goes through physical and occupational therapy, sleeping with splint on their wrists/ankles, getting ongoing IV’s, getting MRI’s, CT scans, xrays, joint injections, scopes, surgeries, shots, throwing up, in pain, with swollen joints, with fever, with rashes, struggling to walk, and yes…I too see my child smile and am so thankful that through it all he/she finds a smile.

·         It affects every child differently.  It’s an autoimmune disease and can be mild to severe and chronic and can be different from day to day

·         It strains a marriage, couples, relationships

·         It’s hard to balance between children

·         We advocate, educate…so others will begin to understand

·         We experience many financial burdens

·         It is hard to admit that I can’t “fix it”

·         A normal life is a struggle

·         Our kids miss out on things that their friends are doing, either because of their health, because of treatment, or because they cannot be around others with a flu due to a compromised immune system

·         There are over 100 kinds of JA

·         It affects our careers/work

·         It comes out of nowhere…one day you have a healthy kid, then you don’t

·         Some children are old enough to understand the seriousness of their disease…and the young ones who don’t understand are also scared

·         For those with severe forms of JA…kids face their own mortality…talk about dying

·         They ask us many difficult questions, some that we don’t have answers for

·         Some children talk about wanting to go to heaven so they won’t hurt anymore

·         We live in the moment, not thinking too far ahead

·         The drugs cause many side effects sometimes causing a need for more drugs

·         The alternative to not taking drugs could have grave consequences

·         The continual fatigue is the hardest

·         This disease steals “time” from all of us…

·         My child is losing their hair…and prior to her losing her hair, people didn’t realize how serious this disease can be.

·         We often hear…at least it isn’t _____...but hearing this does not make this disease better to families who live with it because it is affecting our beloved children.

·         This affects the whole family….these are our children...It's a full on battle everyday!

And yet through it ALL…our children

·         Endure it all

·         Are incredibly brave

·         Know a lot about compassion

·         Experience the depths of love

·         Are amazing

·         Are young

·         Want validation

·         Need encouragement

·         Want a voice

·         Do know how to have fun

·         Are overcoming tremendous obstacles

·         Are thankful for each other

·         Are blessed to have incredible strength

·         Can smile

·         Have a much better chance with better drugs…but more research is needed

·         Are strong

·         Hope for a cure

·         Want you to tell someone…everyone…raise awareness…please…

We Spent WORLD Arthritis Day at the Hospital

We had our visit today with the doc and we are still here at Shands Hospital since it’s IVIG infusion day/night.  The good news is it’s just an overnight stay.  Parker’s doc is amazing and we are so fortunate to have her helping our kiddo.  She talked with the principal investigator physician for the RAPPORT study and bought us some time.  She got an additional 4 weeks’ worth of med.  I thought I was losing my mind a bit because I could have sworn we had until the end of December with drug.  I really thought that was what we signed up for…come to find out…YES, that is what we signed up for but because they are running out of money to run the study, we were going to be cut after the trial run was complete.  It really seems unfair on so many levels…but we are thankful for the additional time.  His doc is so very upset by this…she felt that he should get it because so many biologics have failed him but she can only do what she can do and we are frustrated right alongside of her.

In the meantime, an appeal was filed.  We are also going to appeal as parents too.  And his doc is going to call the drug company to see what can be done.  She is also contacting one of her connections at the National Institute of Health (NIH) to see if Parker could be seen up there.  We are feeling a bit desperate.  We do not want to see this disease attack his organs again.

We also talked about trying to decrease his steroids to see what happens.  We have a sense that the steroids might be holding some of the symptoms back.  So we will test that while he is still on the rilonacept.

Also, since Parker is going to need IVIG on an ongoing basis, his doc is going to try and set up home infusion…she said it kind-of works like an insulin pump.  He would get it once a week and it would run for 1.5 hours and infuses in the stomach.  There are a few advantages to this:  we would get to be home; and he would get more continuous levels of IVIG.  For those of you who are not aware, IVIG is an infusion of around 2,000 donors’ blood plasma.  This helps his immune system that is definitely not working correctly.  So we will see about that too.

If Parker cannot continue on the rilonacept and cannot get into NIH, then the only choice left is to go “backwards” and put him on what he has been on before and probably multiple biologics.   As for the symptoms that have returned…we will continue to monitor his temp, Raynaud’s, systemic rashes, and his vasculitis.  She said he has “hot spots” with his vasculitis.  And if by some miracle, he gets to continue on rilonacept long term he may still need to alternate it with another biologic because this darn disease seems to be outsmarting the drugs yet AGAIN!  Yes, it is crazy and we so want to see Parker comforted and feeling better.

Parker was super scared today and totally freaked when they told him he was going to have to share a room tonight with another patient (sweet kiddo by the way).  And even through all his fear, Parker was also super sweet…he asked the doc to come back so he could give her a hug.  He gave her a long hug and he cried.  He loves her so much and he knows that she is really trying hard to help him.  So please continue your prayers and encouragement.  We appreciate the support more than we could ever ever express.

Kids with JA are My Heroes!

Parker says, "Happy Father's Day to Dad and Grandpa Nick!"

Parker is still at Shands Hospital.  We are happy to say that he is improving.  Pain is still pretty intense but the meds are helping to take the edge off.  He got up and walked a bit today so that is great.  His doc came in this morning and although he is still symptomatic she was pleased that many of his blood levels are improving.  There are improvements with his ferritin, platelets, white and red blood cells, CRP, fibrinogen, and his sed rate is good.  She said that with the study she is seeing improvement in the blood first, so this is fabulous news. 



Swollen hands with red tips, greyness between joints,
paleness on hand





Red heels



Parker's abdomen and kidney ultrasound was good.  She does want to keep him in the hospital though because of the pain, pericardial effusion, stiffness, swelling and she is still waiting on some labs and she ran his immunoglobulins today.  He seems to breathing easier today.

We feel so fortunate to have such an amazingly thorough group of pediatric rhuematologists helping Parker.  In the last four days, he has actually seen all 3 of the docs and Michael and I know that their 3 brilliant minds always have Parker's best interest in their hearts because they not only treat him medically but with loving care.  We know that Parker has been difficult to treat and we appreciate their forwardness and honesty and their ability to explain things so that we can understand the whys and next steps and choices we have to make.  So, although it is never fun being in the hospital, we know that he is in excellent hands.

We are glad that Parker has moved past the "placebo phase" of the RAPPORT study and he says he has no regrets in doing it because he knows that he is helping find a cure.  And although Michael and I are incredibly sad to see our son in pain and that this darn disease has once again gone after his heart, we too feel that this next phase of treatment brings much hope. 

Last night was methotrexate night (all those families out there who have "shot night"...I feel for you all). We all thought Parker would be getting it as an infusion in his port....but because of the study and not wanting to compromise anything, it was ordered sub-Q (shot form).  Parker had a melt down...now mind you, he had his steroids increased again and he has been scared and then he was told he was getting the shot form...oh my gosh....we both were in tears.  He is fine with shots...but this method of giving him the methotrexate really makes him very nauseous and he was afraid he would puke.  Remember his stomach has also been really bad and they have been treating that along with the heart since they think his gastritis is flaring big time.  Methotrexate (for those of you who don't know) is a chemo drug and they not only were giving him a shot but an increased dose.  He finally agreed after much coaxing to do it.  They gave him IV zofran first to help and we did it right before bed so he could sleep through the worst part and I lay with him all night. 

It's crazy how I can hold it all together through so much and then something like this shot sorrows me to the core,especially since the doc is talking about continuing the shot.  For the last several months he has been doing the pill form of this because there is a methotrexate shortage of the shot.  And Parker really prefers the pills.  But we also think that the pills is what is irritating his stomach so bad.  I really hate systemic juvenile arthritis...I hate that we must treat it and so many of the drugs are so harsh that you have to give drugs for the drug side effects.  And yet, to not "treat" could have very grave consequences.  And , somehow these little kiddos endure it all....they truly are my heroes forever and ever.

Parker's brother, Logan, came to see him yesterday with Michael (Dad) and Great Aunt Sandy and Uncle John.  That was such a treat for Parker.  Especially when Dad showed up with a tattoo on his arm, just for Parker.  It says "Kids get arthritis too.  Parker's Purple Playas."  All the nurses and docs loved it too!  Pretty cool, huh!

We thank everyone who has checked in with us and who are continuing to say prayers.  Parker sends love out to all of you!

Parker is in the Hospital...

Just a quick note to update...Parker was admitted into Shands Hospital yesterday.  We visited cardiology yesterday for an EKG and Echo-cardiogram.  He has been having that feeling again and chest has felt pressure filled and he has had difficulty breathing.  Last week his nebulizer treatments seemed to help but not so much this week.  After the echo we went and had lunch and you know the saying "no news is good news", so after hanging in Gainesville for a bit we headed home.  About half way home we got the call to come back.

Parker has mild pericardial effusion again.  The good news is that they feel that it will correct itself and we won't have to drain it.  So, for now they are trying to make him confortable and we might increase his oral steroids because of this.  But we will see.  He is already on a hefty dose.  He is also having bad stomach pain and they are also treating that.

Because he is on the RAPPORT study there are some strick rules around medication and we don't want to jepordize the study but of course if he gets any worse we will not hesitate to do what we need to do to keep him safe.  He is looking better today, which is good.  He definitely has had 2 shots of real drug (rilonocept) because at week 4 kids are guarenteed real drug.  However we are pretty certain he was getting placebo the first 4 weeks.  He is just into week 5.

I will keep you posted as we know more. Thanks all for continuing your prayers and for keeping us in your thoughts.  It means a lot.  We are hoping this is a short stay.

Peace, Power, Purpose…It’s Within Us All

Well, we haven’t blogged lately…partly because things have been so crazy in the Lentini House, but also because we have really been trying hard to look at the bright side and to stay positive through all our struggles.  Somehow, by writing, it feels like admittance of how hard things have been.  But we also realize that for many, reading about such difficult times is not very “uplifting” and is probably draining on our family and friends.  But our reality is we are definitely being challenged lately.

We are so fortunate to have so many people who care about us and we do know that you want to know what is happening…so I will try to explain as briefly as I can but it’s a lot.  Since this is “Parker’s” blog, I will start with him.  As much as we didn’t want to admit it, Parker has slowly been declining.  I think we were hoping that the IVIG would be the little extra something that would bump everything into gear.  It has helped.  We are seeing his immunoglobulins improve.  And with this improvement he is better able to fight off infections.  However, the actemra (the biologic infusion he has been on for about a year) has failed him.  His vasculitis is horrible, pain is through the roof, swelling is over the top, skin coloring is pretty bad, rashes are back, and he is behaving like he is having fevers with sweats and chills but temp is hanging between 96 and 98.4 degrees.  But actemra suppresses fevers ( a scary thing because then you also don’t have warning signs of illnesses).   

Day 3 and He Still Can Find His Smile

Last Friday was Parker’s regular infusion day.  He was doing so bad he was admitted into the hospital.  He is still in the hospital.  Because the actemra has now officially failed, we must change biologics once again.  He has now tried enbrel, humira, remicaide, actemra, and then a combo of both actemra and enbrel together.  All have failed.  People this is why we desperately need more research! 

We Are More Thankful Than Ever That We Decided on a Port for Meds

Today, the doc is moving to another class of biologic drugs called IL-1.  He is being given kineret (also called anakinera).  He just got his first does.  She says that some of the systemic features of his JA will slowly improve with each dose, but the decreased pain may take longer.  He is going to get 2 doses a day infused directly into his port by his loving, caring, and a little bit scared momma.  This means that his port will be accessed 24/7.  One of the reasons we have moved to this drug is that we have exhausted most options.  Another is because his doctor really wants him to be in a study.  He can be on kineret up to 4 days prior to the study.  We are highly considering this study and I am currently talking with insurance about this as being a very important option for us.  The RAPPORT study is also with an IL-1 biologic (Rilonacept) but it only has to be given 1 time a week.  It is in its third trial study; they are seeing great results; and it is a drug that is already FDA approved for intermittent fevers which is a huge feature of systemic JA. 

It's hard to see in this picture but his ankles were about the size of
tennis ball.  There was also redness and swelling above his little toe.

This was one of his ankles the next day.  A little less swelling, but vasculitis is
evident and he kept getting rashes.  There is a bit of a rash here
above his ankle.

Swollen little hands, with red fingertips, grey middle segments
and white hands.  (Picture doesn't show clearly)

Rashes on arm, again it's not clear, but there were pink lines.
Rashes come and go daily again.

Systemic JA is very very complicated and scary.  Children can die from this.  It attacks not only the joints but internal organs.  Parker has already had complications with his lungs, lymph nodes, stomach, and heart.  Michael and I are not willing to let this disease take over without everything we have to fight with being utilized.  We also will continue to advocate for each and every child with JA and related autoimmune diseases.  The world needs to know how desperate all families are for a cure.  No child should ever have to endure intense pain and no parent should have to observe powerlessly and with constant worry.  We pray that the time for a cure is soon!  We need to the cure now! 

A Gaspirilla Krewe visited and
handed out beads to Logan.

In addition to our battles with JA, our other son, Logan, was hospitalized multiple times with severe migraines.  I know many out there reading this will be thinking about his well being and the stress of JA on our family system impacting Logan.  Of course it does!  How could it not?!  But we are pretty sure that these migraines were a combination of triggers.  One, he’s had migraines (that have been under pretty good control) since he was 5.  More recently, the combination of JA stress with his brother, puberty, and the IB program have certainly triggered this 7.5 week long intense migraine.  After a huge scare that this episode could have also been autoimmune related (he is ANA positive which is a marker in the blood) and thus ruling out vasulitis of the brain, we are very relieved that a combination of meds is now controlling his migraines again.  He is also going to be in biofeedback therapy soon which we are sure will give him some great coping tools.  Then hopefully we can also wean some of the medications.

Logan's Spinal Tap

Then there is my health…Without going into too much detail because we are still trying to figure “me” out, it is looking like I have an autoimmune disease.  The rheumatologist that I have been seeing for about 8 months now thinks it is a connective tissue disease.  I wasn’t going to talk about it on this blog, but then I got to thinking about how brave Parker is being and if I am going to be “true” about advocating, I thought it was time to share this news.  Actually, today was going to be the day that I talked to the doc about my own treatment, but that is now put off a bit due to Parker being in the hospital.  But as you can see, there seems to be a genetic link with all this autoimmune stuff.  I feel stronger than ever that this autoimmune stuff needs to be figured out now for our future generations of children.  I recently had an ER visit myself and ended up being admitted.  The intense pain that I felt hurt me emotionally more than physically because all I kept thinking is that my child is in this kind of pain every single day and I cannot seem to stop it for him.

Michael is the rock in our family.  He helps us all “keep it together”.  Thank goodness he is healthy.  His love, support, and understanding means more than words could ever portray.

Today, we have a glimmer of HOPE again as we journey down yet another path.  Parker also saw his karate teacher that he met in the infusion room.  He had class on the floor today and Parker went to part of it.  We learned to bow with peace, power, and purpose.  Today we worked on building peace within us, using the power within us, and utilizing our purpose…to teach the world. Please, if you are reading this, consider supporting us and other families battling autoimmune diseases.  Of course juvenile arthritis is near and dear to our family’s heart.  We invite you to join our team, Parker’s Purple Playas Pounding at JA, as we walk on May 5^th.  It is free to walk with us and you simply need to go to this link to sign up:  Click to link to Parker's Team Page

If you are not local, consider joining your community’s Arthritis Foundation’s walk.  And of course, donations are also needed as they help fund research, education, and camp for our children.  You can also support us in another way; join us virtually on International World Arthritis Day on May 20^th.  For more info go to: World Arthritis Day - Click to learn more   

And finally, you can support us by continuing your encouragement, prayers, positive vibes, and by sharing our story and educating others.  Only when the word spreads will there be enough awareness to “teach the world” and promote research for a cure.  Be there for the future of our children and their children.  

Much hopeful love, the Lentini Family

Latest News…New Med...New Hope

Well, I have been avoiding putting into words this last week’s events.  The purpose of our blog is to raise awareness around juvenile arthritis and we very much want to do that, but it is also hard to put into words what we have been experiencing.  The emotions have been from one extreme to another, but continually felt with love.  Our fear that Parker might have lymphoma was very real and yet, through it all, we were always hopeful.  Parker was aware of what he was facing and asked many difficult questions and when the pain grabbed hold of his little body he stopped himself from saying from what he sometimes says, “I just want to die and go to heaven, so I don’t have anymore pain” and he began to say, “I don’t want to die” or “why is all this happening to me”…But he knew he might have to fight and he would also say, “I know we can do this, cause I have you and dad and Logan.”  We were ready to battle and move forward with whatever we were told. And when the oncologist called to say Parker did not have lymphoma, it was as if the doctor gave me back my breath.  I hadn’t even realized how tightly I was holding myself together.  I could breathe again.  And I thought, “Oh thank goodness he only has Juvenile Arthritis”…and then I thought, “Oh my gosh, he still has arthritis… and now our battle resumes”.  Don’t get me wrong, I know they are not the same and having only one chronic illness is so much better than having two; and of course lymphoma is much more serious…but what so many people don’t realize is that JA is an ongoing painful battle that can also be life threatening. 

As parents, we have extremely difficult decisions to make with very little JA research to back our decisions.   We don’t know what long term effects our decisions will have but what we do know is that we have to do something.  See, we had to halt treatment of his JA until we knew he didn’t have lymphoma because the infusion that his pediatric rheumatologist needed to start him on increases chances of lymphoma.  So we make our treatment choices with a huge leap of faith and we tightly embrace our hope that this next round of treatment will slow down Parker’s JA.  Recently, one of his toes has started to turn in and his hands seem to always be inflamed and in pain along with his ankles, knees, neck, ribcage joints (did you know there were joints in the ribs) and several toes.  And the dentist has been keeping an eye on his jaw because he has had swelling and trouble with it too.  Then there is the constant close eye on his eyes…And we think that his intestinal tract is also affected by the JA.  And of course we still treat his allergies and asthma condition, which has been going pretty good. 

So, last Thursday Parker and I spent the day at the hospital for his newest treatment.  We have discontinued his once-a-week enbrel shot and now he gets infusions of remicade.  The nurse had some trouble getting his IV started (evidence of this resulted in a big fat bruise).  They started with “pre-meds”.  He took his special compounded acetaminophen (all over the counter brands contain corn and he is allergic to corn…in fact, 4 of his meds have to be compounded special for him); then he was given solumedrol (steroid) and Benadryl in his IV.  These are preventative in case he reacts to the remicade and then he received the remicade followed by additional pain meds (due to his flare that day) and they included his regular methotrexate (a chemo drug but at a lower dose than for children with cancer).  By giving him his methotrexate in his IV, we were able to have one week without Friday night shots (a very nice break).  So four hours later, we were on our way home.  The treatment left him very nauseous and for about 24 hrs. he had an extreme head ache, but then they subsided and he seems to be doing somewhat better.  We go back in 2 weeks for his second round and then hopefully not back for 4 weeks.  Once he gets to 4 weeks, he will then get the infusion monthly.  Parker was instructed that he could now get sick easier because his immune system is even weaker than it was with the meds that he is on.  So Miss Clean Gene me will probably be even more of a “germ-a-phobe”…

Many families are experiencing a lot of difficulties this year around their children’s JA.  Please keep them all in your thoughts and prayers.  Many of our JA friends have had changes in treatments, financial burdens, and multiple medical tests that are quite traumatic for young children.  So, we continue to be thankful and hopeful that some day there will be a cure.  We choose to live life fully and we love each other and laugh together. 


This week there was a new publication that might shed some light on how JA is triggered.  Read below:


Science Daily (Jan. 17, 2011) — “Scientists have identified a protein that acts as a "master switch" in certain white blood cells, determining whether they promote or inhibit inflammation. The study, published in the journal Nature Immunology, could help researchers look for new treatments for diseases such as rheumatoid arthritis that involve excessive inflammation.”
http://www.sciencedaily.com/releases/2011/01/110116144132.htm

Where to Start and Where are We Going?

As I sit to write this very first blog, I wonder how to start putting our "journey" into text.  And I wonder if putting our experience in print will somehow make this experience even more real...too real.  It's been 2 long years, yet it seems like yesterday I watched Parker play and excel at every sport he tried.  He would literally run circles around his older brother...we use to tell him to slow down...but today,  I am pushing him in a wheelchair just so that he is not left out of fun and can participate in his community. 

Two years ago, Parker got very sick and spiked high fevers that lasted months and months.  He had weird rashes and reynaud's.  We knew he wasn't having an allergic reaction because he has also had severe allergies and asthma since he was 18 months old.  These rashes were different than hives and they would disappear as quickly as they came and would come and go.  He also complained constantly of pain in his neck, back, hips, and legs in those first few months.  His lymph glands were very swollen.  His primary doctor began running tests and referring us to his regular allergist, an immunologist/allergist, and a neurologist.  He had tons of blood labs, CT scans, MRI's, bone density scans, x-rays, brain scans, GI and bowel scans...and at first the only thing that would come up as positive was sogren's syndrome and a few other levels were off.  The primary doc suspected juvenile arthritis but the expert immunologist/allergist said no because Parker's intelligence was so incredibly high (WHAT?!)...and he diagnosed him with fibromyalgia and we started PT and continued seeing the neurologist.

The primary doctor continued to monitor him and express her concern and at one point (called us on Christmas Eve) to tell us that he might present with lymphoma and that it often doesn't show up in blood until years after it progresses.  So she has continued to measure his lymph nodes throughout these last 2 years and every time she takes out that measuring tape my heart jumps a beat.

The neurologist couldn't seem to figure out what was going on...then Parker started seeing spots and headaches were getting worse and the neurologist talked privately to my husband and I to tell us that this was all psychological and that I (mom) was likely making it worse for him.  This was a very difficult time as we realized that he was sharing these thoughts with Parker's primary and she also talked to me about psychological help for Parker and myself.  Yet, as my husband and I talked through what was happening we realized he was not catching something...Parker's teachers and school nurse even were sharing physical symptoms that they were very concerned about...paleness, extreme fatigue, difficulty walking, falling, fevers, rashes...and yet he had "good moments/days".  I think that this confused matters. Then we realized that the med that the neurologist put him on had side effects of head aches and "seeing spots"...duh?!

About a year and a half into tests and multiple specialists, we switched to the partner of the immunologist/allergist because he also had a office near our home and he specialized in immunology/rheumatology.  After 2 visits, Parker got the firm diagnosis of Juvenile Arthritis.  So we came full circle.  I called my husband immediately and then called the primary to tell her she was right all along.  It was quite a moment for us...it was not psychological and we thought...oh, this isn't that bad...it's arthritis...we can deal with that...well, we had no idea where our journey was going to take us!

We are now seeing an amazing doctor at Shands Hospital (about 2.5 hours from home), but totally worth the drive.  We have been with her for about 4 months now.  It's been a very intense four months as we have tried to decrease Parker's steroids (on them 8 months now) and add medications that are suppose to slow the progression of rheumatoid arthritis (we are told it's not curable...but kids can go into remission).  For the past 3.5 months we have been giving Parker 2 shots each Friday night.  A biologic drug (enbrel) and a chemo shot (methotrexate).  No luck!  So a few weeks ago Parker went to the hospital for an infusion of sulumedral (1,000 mg)...to get him over the hump.  It worked for 3 marvelous days.  Parker was his old self for a moment in time.  He then got worse...much worse...pain and swelling has been horrible and steroids were once again increased. Parker has pain in every joint...even the little ones in the ribs and jaw and toes... Then we got the call!  Parker's JA is progressing.  The enbrel is not strong enough.  This week we start remicade infusions.  My husband and I had to make the hard decision to put him on this as there are little options...see this medication can increase chances of lymphoma 20%...but if we don't treat the JA he could have permanent joint damage and lots of pain.  So, we will be going to Shands this week for his first infusion and it could take 3.5-6 hours since they need to monitor him closely and check vitals every 15 min.  So I wonder where this new medication will take us...

I wish that more people knew more about how much Juvenile Arthritis impacts a child.  It's not just for "old people"...It doesn't just affect their joints...it affect their internal organs, their developing little social selves, school, their former sense-of-self, and the pain...oh the pain...how do they do it?!  We are very very proud of Parker.  And we can't even begin to talk about how amazing Logan is with supporting his little brother!  The night before our first visit to Shand's Hospital he sat at Parker's bedside singing Bob Marley..."Don't worry, about a thing, every little thing is gonna be alright..."    We're gonna be alright.