Thankful Reflections of Our Continual HOPE

The house is quiet and still as I reflect on our JA journey thus far.  This has definitely been the “road less traveled by…” On our voyage, we have met the most amazing people, witnessed the deepest strongest random acts of kindness, been touched by supportive and energizing love, and through it all, our hearts have been overflowing with hope each step of the way.  Truly all these blessings are multiplied over and over again as we meet children and their families who ride alongside us.  And for those who choose to continue to love and support us, your lives are also forever touched by the beauty that JA can bring…

Yes, I said “beauty”…so many open and loving hearts pour out that beauty and as much as I try to explain it…this beauty can only be felt…it is indescribable.  Our family has experienced immense pain…we know of children who have passed away with the form of this disease that Parker has…Parker has processed those questions and concerns about death.  He has talked about heaven and being “pain-free” with no more sticks, swelling, over-taking fatigue, and being able to “play like other kids”.  That is a very profound thing for a family to discuss but a healthy discussion when it is a real feeling.  Parker has been as positive as possible through all of this and his wit and smile are contagious.  Those of you who have looked in his eyes know exactly what I mean.  Our struggles with JA have allowed us to feel true beauty.

For more than 2.5 years, we have made our two and a half hours ride every other week up to the hospital for Parker’s treatment and medical care.  For about four years, systemic JA has attacked our son.  We are joyfully sharing that we are witnessing PROGRESS!  Parker’s doctor has figured out a way to get his IVIG infusions at home.  This Sunday will be his third weekly infusion and last week, with the changes that were made, I am happy to report that he did not have an allergic reaction this time.  His weekly shot of Rilonacept is also doing what we had hoped…it is really beginning to calm his JA down. 

Since starting the RAPPORT study on Rilonacept, Parker’s intermittent fevers have ceased.  We are seeing less skin rashes too.  And in the last 2 weeks, we are also seeing less swelling around his joints, especially his ankles, and his vasculitis is less intense.  This progress has allowed us to start decreasing his steroids (after 2.5 years on them) and Parker is walking more and more.  And once he got past the “placebo” phase of the study, this disease has stopped viciously attacking his internal organs.  I know study drugs are scary…because we don’t know long term what the drugs do.  Our family has chosen to “live in the moment”…we KNEW the disease was attacking our child’s body in a very fierce way…Parker’s doctor recently mentioned that if we hadn’t done all these biologics (even the ones that didn’t “work good enough”), she is pretty certain he would already have contractures…and I hate to even begin to think what it could have done to his heart, lungs, lymphatic system, intestinal track, vascular system, muscles, skin, and who knows what else because nothing is the body is immune to systemic JA.  It is a very mean beast.

Some other celebrations since the RAPPORT study and reintroducing the IVIG infusions that you will be excited to hear about are:  Parker has bravely spent the night at a friend’s house and is planning to go to another friend’s house this Friday night.  He has not been doing sleep overs for the past 4 years.  We have to also be thankful to these families who invited him over because I know all his meds are a bit overwhelming J.  He is going to finish the year out with hospital homebound as we work on getting his levels up some more, but he is really talking about starting high school AT school and the principal is being quite supportive about meeting his needs.  This is humungous.  Parker is also able to maintain longer conversations…I know that sounds like a crazy thing to celebrate, but now he talks with his enthusiastic fun-loving voice again.  He is engaging, excited, and more energized.  It is such a beautiful voice to listen to.  There are also other, simple things, that most take for granted…but not us…Parker can cut his own food again, can shower independently these last 2 weeks, wants to try going to an amusement park again, can dress more often without our help, can eat without intense stomach pain nor food getting caught up in his throat, gets excited about “parties” again, is having less nightmares, is asking to have friends over again, and he seems to be getting stronger muscles.

We know that this journey continues for Parker and it is likely to be ongoing but we are so very proud of his strength and bravery.  Do you know that he is even sticking the 3 needle probes into his own stomach for his weekly home IVIG infusions?  WOW!

Someone once told me, during one of Parker’s hospital stays this last year, that they didn’t like the word “hope” because it didn’t sound certain, definite and that “faith” was a better word to use when you have a child with chronic illness.  I have reflected on that statement for about a year and I am pretty certain that “hope” has been the perfect word for OUR family.  Hope has kept us going during much uncertainty where nothing has seemed to have a definitive answer.  And during a year of what seemed like endless uncertainty, we are certainly thankful for much… And we will continue to faithfully HOPE!

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!

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.

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.

Progress with Systemic On-Set Juvenile Arthritis and the Drug Rilonacept

Week 17 on Rilonacept...These past few months I feel a bit like I have been “holding my breath”….waiting…to exhale and release…  I have wanted to update Parker’s status but have not known how to put into words the progress….AND lack of.  This morning, as I sit and try to find the words, I am still feeling at a loss.

Our family has been through a tremendous amount of challenges, while at the same time gaining strength, connectedness, new friendships, faith, clarity on value of life, compassion, hope, and love…We are so thankful for the loving support that has come from very unexpected places and people.  There have been strangers who approach Parker at the hospital and inquire about his illness; the video game store cashier has totally connected with our boys and revealed he has RA; the children from Parker’s school (where he hasn’t been for about a year) connect with him on x-box daily; the nurse at his school still collects tabs for the hospital’s Ronald McDonald House; our co-workers check in on us and help us out at work so we can attend to the medical needs; the nurses and child-life staff that come from others areas on the floor to Parker’s hospital room just to say “hi”; the early childhood professionals in the field who just come up to me and hand me a check to raise funds for these children and their families; the other “JA” moms who send me a quick note of encouragement; and the children and babies who look into my eyes and smile filling my soul up with joy…

We also extend our deepest gratitude to the team of doctors and nurses and researchers trying desperately to find a way to help Parker…of course one would "expect" that this would be a group of people who help…but it is “how” they are supporting us and treating our son that is most touching.  This group of people has become our angels on earth.  Systemic on-set juvenile arthritis has been the scariest experience for us and their persistence and patience is never-ending.  I have wanted to yell out to everyone that Parker has made progress on the study.  Rilonacept is definitely making a difference and has helped Parker make some gains…the incredibly hard part is he has soooooo far to still go.  As a parent and a sibling, we watch and want desperately for things to go back to the “way they were”…it is this part of the disease that is relentless.  We, as a family, are coming to the realization that this disease has attacked someone we love so very much and we cannot “stop it”…it keeps attacking.  I have to believe that it is going to get better…I have to believe that the drug is somehow helping and that if we were not doing this treatment it would probably be worse…I have to believe that God will protect our son and give him quality of life…I have to believe that our love and strength will pull us through… I have to believe that a cure will come….all while we hold our breath and wait….always waiting… 

A parent wants to protect their children…it is our instinct….it is our love.  We hurt when we see our children hurt.  Parker is still struggling.  And when Parker struggles, then Logan struggles…even though he doesn’t always “say it”, we see it; feel it.  Parker has been having very “yo-yo” like days.  Some days are better than others and we live in those moments.   But our reality is he still hurts big time.  He intermittently has bruising issues (this scares him because he knows the connections of what this means).  His shoulder is now popping/clicking and sometimes freezing up (we are doing x-rays this week, possible MRI). He is still having jaw issues and I need to get him to a specialist who can make a mouth guard (at the tune of $700-900).  He needs to have his scoliosis evaluated…  He is having red lines again.  The fevers are low grade but still there.  He has red hands and feet again with peeling (usually means he is fighting something).  And his immunoglobulins are still really low.  We find ourselves dealing with the biggest, most urgent medical need of the moment, but they ALL need attending to:  the splints need stretched out (swelling makes them uncomfortable yet again), his teeth are reacting to meds, he could probably use a visit to the counselor, and the list goes on….and on…and on.

But we are trying hard not to focus on the problems (although we cannot ignore them).  He is less swollen.  He does have less rashes.  He is moving better and on some days doesn’t use his wheelchair when out.  For this we are thankful…and he is making all his hospital homebound teleclasses (no absences).  He desperately wants to go back to his school and we were told this week there are no openings in 8^th at the moment and he is crushed.  But we are hoping that he continues to improve and that an opening comes up.

Parker is voicing the impact this disease is making on his life.  He is trying to look into the future with optimism.  He is becoming a little advocate for JA.  And although we try hard to not allow JA to “define” him…it is now a huge part of his life…HE LIVES WITH IT…But he is still sweet Parker…our son, a brother, with incredible drive, undeniable strength, a passionate Tampa Bay Rays fan, with techy talent, and a contagious smile.  We love you so so much Parker!

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

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