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:

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:

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


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