Wednesday, March 21, 2018

10 Years of HOPE

While reflecting on the last 10 years, our family has learned so many valuable lessons:   
Our worries, revealed faith…
Endless treatments, needle sticks, and procedures brought us solutions…
Ongoing pain, showed us even greater strength…
Unsolved mysteries, taught us patience…
Physical barriers and road blocks guided us to alternate paths… 
Funding brought us research and closer to a cure…
Loss filled us with a never ending drive to battle on…
But the greatest lesson of all is LOVE. 
We are grateful to each of you who have loved us along the way;
… and we are grateful that together we have never lost HOPE. 

Our strong, incredible, forever hopeful kiddo has endured way too much these past 10 years.  His journey began in elementary school.  Kids should just enjoy being kids.  We will do all we can to bring JOY to children and their families by helping to not only fund a future cure, but also camp, family fun days, and conference for kids who are living in the here and now.  This is why we still ask for support year after year after year.  Because until there is no need to ask, we will. 

Please take a moment to scroll through Parker’s 10 year medical journey.  By no means has his life only been filled with these hardships, it’s only a piece of him.  He is so much more than this horrible disease.  I just encourage you to take a moment and pause and let this list sink in.   He is not the only child enduring Juvenile Arthritis; he is one of 300,000 children.  What if this was your daughter, son, niece, nephew, or grand child?  Wouldn’t you do whatever you could?  I shamelessly ask for your continued support…walk with us, pray with us, and if you can…donate with us.  Details are at this link:  https://events.arthritis.org/participant/Parker-Lentini

Could you imagine enduring all this for 10 years?
·         First year of symptoms, doctors ruled out:  Lymphoma, Leukemia, fibromyalgia, MS
·         It took 1 year 7 months to get a diagnosis; another 6 months later to receive the correct diagnosis of systemic on-set juvenile arthritis
·         His many symptoms:  intense pain, high fevers, roaming rash, paleness, extreme fatigue, falling down, difficulty walking, peeling fingers and toes, bruising, rough skin on face; swelling; and the pink finger tips
·         All joints in entire body affected (Did you know there are joints even in the ribcage?)
·         First year, Doc told him no contact sports, skim boarding, jumping, or skate boarding
·         Multiple organs affected: 
o   heart
o   lungs/bronchioles
o   lymph nodes
o   brain
o   eyes
o   vascular system
o   adrenal system
o   skin
o   kidneys
o   GI tract
·         Multiple overlapping syndromes/medical issues: 
o   allergies
o   asthma
o   raynauds
o   myositis
o   vasculitis
o   osteoporosis
o   hypogammaglobulinemia (immune deficiency)
o   brain pseudo tumor
o   papilledema (pressure/swelling on optic nerve)
o   psoriasis
o   anklyosis spondylitis
o   interstitial lung disease (pulmonary obstruction and restriction)
o   adrenal insufficiency/crisis
o   kidney stones
o   autonomic dysfunction
o   possible crohns
o   alopecia
o   cushings
o   4 rounds of pericardial effusion
o   pluersy
o   on the verge of MAS twice (life threatening)
·         18 medical specialists all throughout the state (up to 4.5 hours away)
·         2.5 years into journey, another lymphoma scare
·         2011 began pain meds
·         Many Meds (anywhere from 18 to 32 meds at any one time)
o   Shots tried:  Enbrel, humira, ilaris, stelara, cosentyx
o   Countless infusion room visits for treatments of IVs: Remicaide, actemra, kineret, rilonacept, simponi, rituxan (wipes out all B-cells), Reclast
o   7 years of IVIG (blood plasma to boost immunoglobulins to help fight infections)
o   4.5 years weekly chemo shots with anti-nausea meds
o   Growth and hormone therapy
o   Anti-organ rejection med
o   5 years straight of prednisone (steroid) with major weight gain
o   9 years of compounded meds due to allergies, with a high cost
·         Took place in a clinical trial:  RAPPORT Study
·         Surgeries: 
o   4 reconstructive surgeries
o   sub-clavicle port (permanent IV access over heart)
o   cystoscopy (remove bladder blood clot)
o   kidney stone blasting and stent
o   5 spinal taps
o   about 15 nerve ablations
o   3 Endoscopies, 5 colonoscopies
o   6 teeth extractions
·         Many many ER visits
·         So very many hospital stays, some in PICU
·         Many talks of dying and going to heaven to escape the pain
·         Altered school schedule, charter school, shortened school hours, hospital homebound, virtual school, and now on track to get GED…there really wasn’t a “place” for a kiddo with intermittent attendance and severe/complex health issues.
·         Special equipment: 
o   mouth splint for jaw
o   shoe inserts
o   ankle/foot orthodics
o   knee scooter
o   wheelchair
o   walker
o   hand splints
o   shower chair
o   therapy ball for seating
o   built-up spoon/toothbrush/pencils
o   night leg splints
o   wrist splints
o   blood pressure cuff
o   bi-pap machine
o   nebulizer
o   home IV pump/poll
o   storage and mini frig for all the meds and supplies
·         Medical Treatments:
o   2 rounds of occupational therapy (OT)
o   Ongoing rounds of physical therapy (PT)
o   Aqua therapy
o   Biofeedback
o   Acupuncture
o   Counseling
·         Multiple tests/scans: 
o   Xrays
o   Blood labs…so many blood labs
o   CT scans
o   MRIs, MREs, MRAs
o   hidascan
o   dexascans
o   pulmonary function box tests
o   field of vision tests
o   6 sleep studies
o   ultra sounds
o   EKGs
o   EEGs
·         Bullying, non-educated adult humiliation
·         Insurance denials, appeals, overrides, case manager
·         Children/friends have died
·         Make-a-Wish recipient

With every birthday candle blown-out, cake cutting, shooting star, fallen eye lash, coin thrown into a well, 11:11, and dandelion blown….the wish is always full of HOPE:  We wish for no more JA pain and a cure for all children!  If you can, please join us for the Walk to Cure Arthritis on May 12.  

Again, details are at this link:  https://events.arthritis.org/participant/Parker-Lentini

We thank you for supporting us, crying with us, laughing with us, and loving us!
The Lentini Family

Wednesday, March 14, 2018

1 Step Forward, 2 Steps Back...By Parker


Have you ever heard of the saying “1 step forward, 2 steps back?” 
Well, never before has that saying felt more true about my life than now. 

All the "steps" taken to correct my feet/ankles over the last 8 years.
Bottom row is before surgeries  Top row is after surgeries.
As most of you know, I had my 4th ankle surgery this past August. They put 2 screws in and did a subtalar fusion of my foot and ankle. Earlier this year I finished doing physical therapy (PT) on it and for the first time in 5 years I haven’t had to use my wheelchair. 
Top right foot with 2 screws.
Side right foot with 2 screws.


Since that surgery I have only used my wheel chair for Disney trips; and I have been walking an average of 3,000 steps a day. This might not seem like a lot, but compared to before the surgery where I was walking less than 1,000 steps a day, it’s a big improvement. But that is just the beginning, for the past month I have been walking much more than that. At physical therapy I have been training my endurance and stamina by walking on the treadmill for 6-8 minutes at 2mph (Ludacris speed). And I do that up to 3 times in the hour that I am at PT. The main reason that I have been doing this is so that I would be able to walk the full mile at the Walk to Cure Arthritis this year, in under 30 min. And it was really looking like I was going to be able to meet this goal. Until yesterday.

Yesterday I went to see my surgeon because for the past month or so I have been feeling a bit of a sharp pain in my ankle when I walk too much. Now normally this wouldn’t concern me because I would just assume that it is some kind of arthritis pain, but ever since I got the same surgery on my other ankle I haven’t felt any pain like this. So, we decided to go see the surgeon and get X-rays. And this is where we started taking steps backwards. The surgeon came in with the X-rays and showed me where the screw is and explained to me that my foot never fused all the way and because of that the screw has become loose. And because the screw has become loose, whenever I walk the top of the screw is being pinched. 
Notice back space around screw.
Where the tip could be pinching since loose.





















Then, I asked him what could have caused this to happen. And he said that there were a couple of reasons that this happened. The first being that since I have osteoporosis it takes much longer for my bones to heal, which is why I used a bone stimulator after the surgery. Another reason is because I haven’t been wearing a brace since the middle of November, and this isn’t because I don’t like the brace or anything like that. It’s because our insurance wouldn’t approve the script for the brace because I don’t have diabetes. Which is such a stupid reason. So, now because the dang insurance didn’t approve my brace, my ankle wasn’t held stable and never fully healed. So thanks for that.

But it was the third reason that could have caused this problem with my fusion that really got to me. The doctor told me that because I have been walking so much and training so hard at PT, I had inadvertently caused my screw to become loose. And that was just devastating. I had been working so hard, pushing myself so much, and to find out that because of that I had been making myself worse…it just killed my motivation, my spirit, my drive to keep working harder at physical therapy. I was heartbroken.

So then I asked the surgeon what I can do to prevent this from getting worse, and he told me a couple of things. First, he said that I need to get a new brace for my shoe so that my ankle is supported. And now that we have new insurance hopefully they will approve it. If not, then we will have to pay out of pocket for it because we really don’t have a choice this time. Secondly, he said that I need to start using the bone stimulator again, which is no problem. It was the last thing he said that felt the final blow. He told me that I need to stop walking as much for 2 months. That means no weight baring training for the walk at physical therapy. If he doesn’t clear me in 2 months to walk fully again, that could mean that I might not be allowed to walk the walk. And that’s when I took the second step backwards. All the training that I have done for the last month was for nothing. Because now I can’t train for at least 2 months; and by then it will be time for the walk.  I won’t be prepared to reach my goal of walking the full mile in under 30 minutes. So I asked the surgeon what I was allowed to do. I am allowed to walk without the brace in the house to the bathroom and to get a drink. I am allowed to walk around outside the house and in stores, as long as I wear the brace. But there is one caveat. The moment I feel that pain in my ankle, I am no longer allowed to walk until it completely goes away. It’s hard because if my foot doesn’t heal and fuse correctly, he might have to go back in for surgery to re-fuse it. It just sucks because I thought that I was finally done with my feet and ankles. I thought that I wasn’t going to have to worry about them anymore. I thought that after 11 pairs of braces/inserts and 4 surgeries, I was finally done. But I just keep taking steps backwards.
 
With each new step, I keep growing.
Come walk with me at the next Walk for Arthritis:  Parker's Purple Playas walk page
Once you get to the page, click on "Parker's Purple Playa" to join our team.  It's free.




Sunday, February 4, 2018

Parker's in the Hospital...but We Celebrate Life

As I sit here in the hospital watching my courageous son chat it up with the nurses and docs, I am incredibly grateful for his presence in our lives.  There is an odd feeling that comes over me when people come in to see him because the word on the ward is "Parker's Here".  I use to get really sad that staff knew him because that confirmed that he has had some frequent flyer miles at both our local hospital and at the hospital his rheumatologist is at (2 hours away).  But now, I am joyful that that there are people who love him and seek him out just to say hi.  It is really comforting and a beautiful thing to witness him conversing with these amazing medical staff who truly know the value of life.

And I am so proud of the young man he has become.  Last night, in the midst of all that was happening with him, one of his docs shared that she really didn't understand why Parker has so many health issues and that things are not "easy".  And not only does he have multiple overlapping conditions, but he also seems to have crazy drug reactions and side effects.  But it's what she said next that really touched my heart.  She said that she knows that all this is hard but that she really feels that Parker is making a difference and raising awareness about autoimmune diseases.  

Sometimes, really difficult stuff happens and we have moments of fear and wonder how and why the things that happen, happen...but in this moment, it felt like his voice has purpose.  I shared this with Parker, because sometimes I don't think he realizes that although all this is happening to him, his story is reaching and touching others.  

Recently, PhRma contacted him to share that one of the interview/videos that he did with them as part of their #GoBoldly campaign has been getting loads of traffic.  We went to see just how much and we were completely blown away that this video has over 1.2 million views.  Check it out:

He was telling one of the nurses about it today and that we need to get the word out more that children can have some really difficult days living with juvenile arthritis and that for some it can be life threatening.  So even though we are at the hospital, it is moments like these that just make me pause and really appreciate life, my children, our family and friends, and all those amazing medical staff who have chosen to give back to this world.  I will always be grateful for the people who share in our lives.

Thursday, October 19, 2017

Just a Bit of How Things Are…

I know we have been quite … Parker has not been feeling well at all.  As a mom, it is incredibly hard to watch your child struggle day after day.  I keep thinking, tomorrow will be better…we are going on two really rough weeks with loads of inflammation and some adrenal issues.  His adrenal insufficiency can be pretty scary and every time this starts up, I feel my heart squeeze so tight it hurts.  We came so close to losing him with one of his adrenal crisis episodes and I tell myself we are better equipped with both knowledge and meds now, but I still get scared. 

Parker is now taking a stress dose for his adrenal insufficiency because he might also be fighting a virus.  And he is also taking meds for his pain and inflammation.  During these last 2 weeks, he has barely been out of bed.  The balance of helping him move so he doesn’t hurt more from being stiff, and the balance of not moving too much that it makes things worse, is quite delicate.  And I admit, I am not sure if we will ever master that.

It’s been hard for me to write blogs lately…I have wanted to allow Parker to tell his own story.  But when Kristen was here for her extended stay, she and Parker told me that a mom’s perspective is also valuable and they encouraged me to blog more.  The thing is, it makes everything so “real”…and I keep thinking and praying that Parker will get better…in some ways he has but in other ways, well… It is just our reality. 

So I cry in private on the really hard days; and I try as hard as I can to be “normal”…going to work, helping others, being as social as I can, and sometimes just being quiet and to myself.  On the “good days”…I just want to do everything we can fit in because I want so badly for Parker to experience JOY.  Of course, there seems to always be a price to pay for joyful interludes. 

Having a child with chronic illness can be quite lonely…because it is chronic, conversations are hard.  Parties are harder… I don’t know if other moms have these moments too…where you stand in the middle of a room full of people in a buzz, usually for a joyful gathering and you feel totally alone.  It is the weirdest thing ever.  I don’t know how to begin conversations anymore.  And I don’t think people know how to converse with me.  And sometimes, I avoid … because it is easier, less exhausting.  It’s like I am holding onto my reserves.  Just this week, someone asked about Parker and when I started explaining his surgery it turned into “oh, I have arthritis too”….and I got to hear all about how this older woman had it so hard.   Then, I felt horrible because I think she has no idea how her comments hurt …but that is just it, so many have no idea.

And let me tell you…all you moms with young ones with severe chronic JA…well, when 18 hits…watch out.  My world is a bit upside down.  18 makes you reassess, plan for the future that you were certainly not prepared for, and oh the paperwork…  I know not all kids are as severe as Parker, but whoa…this 18 years old stuff is something:  Do we do permanent disability?  Then there is Medicaid (or will there be…)?  Will he live on his own; or should we get a home with a separate apartment or mother-in-law suite? How long should I work?  Will he work?  Will I run out of sick leave?  Will we ever take non-arthritis related trips/vacations?  Do we remove his port and put a new one in or not?

And then I remind myself…I can only do what I can do in a day.  So, we do what is needed in the here and now:  Like buying two pairs of shoes, because one foot needs a nine and the other needs an 11 due to the ankle/foot orthotic…Or bringing the puppy up on the bed for some Parker cuddle time and a joyful moment…And making a yummy snack of yogurt, granola, and berries because Parker will eat that.  So I admit, these last 2 weeks have been really hard and we could really use some better days in the near future.

Monday, August 28, 2017

4th Foot/Ankle Surgery by Parker

As I am writing this, I am less than 24 hours away from my 4th foot/ankle surgery. I am actually excited for this surgery because last year I had the same surgery on my other ankle; and since then I have been walking more. So, I know this will help, but part of me can’t help but be a little nervous. However, I am not nervous about the surgery but what I am nervous about is the recovery.

The recovery for this will be anywhere from 2-4 months. I will probably have a cast on for about a month, then a boot for another month after that. Next, I will have a brace that goes up to just about my knee for a month, then one that just goes above my ankle for another month after that. Meanwhile, during this whole process, I will be doing physical therapy. The part that is the most annoying to me is having to shower with a cast. Luckily, I have done this before so I know what I’m getting into.

So I sit here thinking to myself, how am I going to do this?  The first thing that comes to my mind is one of my best friends in the whole world, Kristen (Kmac), and how she is the strongest person in the world. If you didn’t know, Kmac ended up paralyzed due to her arthritis. Now she lives her life in a wheelchair. But that wheelchair doesn’t hold her back. Kristen still lives her life to the fullest whilst being completely independent. But the reason that Kmac is the first person to come to mind is because of something that she said to me earlier this year at the Houston arthritis conference. What she told me was that before she was paralyzed, she was in constant pain but at least she was able to walk; and now that she can’t walk, she isn’t in constant pain. It was what she said next that truly inspired me. She said that she would go back to being in constant pain if that meant she could walk again. So for the rest of that trip, I refused to use my wheelchair when I was with her (which was all the time), because I felt that since I do have the ability to walk; I should use it no matter how much pain it caused me. On the last day of the trip, Kristen came up to me and told me that she was so impressed that I walked the whole trip even though it caused me to be in immense pain, which meant the world to me. She then said that she wanted me to use my wheelchair that day. So I did and that trip made me realize that I am capable of far more than I realize.


The next week I went to camp to be a counselor and I decided that I wouldn’t use my wheelchair for the whole week. And you know what I did? That week I may have had to take extra meds but I walked a total of 60,000 steps. That was even more than my dad had walked that week. So at the end of the day, I want to thank Kristen for giving me the strength to get through this upcoming surgery tomorrow. And to you, Kristen, if you are reading this, in my eyes you are the strongest person in the world; so keep fighting and I love you girl.

Saturday, July 1, 2017

Happy JA Awareness Month


 

Juvenile Arthritis Awareness month has officially begun…The years seem to loop back around quickly and I feel a little bit like a broken record; but we desperately need a cure.  We have been a little quiet lately, not knowing what the future holds, trying to make big decisions, and wishing there was really big progress around the corner.  Parker has been in, what feels like, a holding pattern.  Every month, when we refill his cosentyx (now on for nearly 6 months), they ask if symptoms are improving, getting worse, or staying the same…I say staying the same.  They say great.  And then I say but same is not great…it doesn’t seem to have helped him yet.  He is also on Rasuvo (auto inject methotrexate)…but that darn med makes his leg go numb, so we don’t know how much longer he is going to use it.  Docs, nurses, and pharmacists all say that is not one of the side effects…I beg to differ because, at least for Parker, it is. (And by the way, he tried the other auto inject of otrexup and the numbness was even worse).

I am a little more worried these days, wondering what the internal organs are doing.  He has had many issues since my last blog post.  Gastrointestinal issues (possible crohns, but meds might be masking it), Kidney stone that had to be blasted out, many flares with fevers and rashes, the never ending battle of pain, adrenal crisis twice, possible dysautonomia flares, and the need for a re-do on this right foot/ankle/tibia.  He now has surgery scheduled for August 28.  The surgeon will be fusing that foot like his left, with 3 bolts.

Through it all, Parker fights with his driven spirit and is balancing these not-so-fun medical issues with real fun.  He is part of a large campaign that will launch later this month (yes, that’s a little teaser); he was selected to be a “Leader in Training” (LIT) at Camp Boggy Creek for cancer week; and he is gearing up for his first year at the JA Conference as a “young adult”…Yes folks, he is turning 18 on August 5.  I still can’t believe my kids are now both adults.