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 |
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 5th. 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 20th. 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
