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