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.