Sunday, July 28, 2019

Parker’s Medical Marathon


As we started our week, Parker and I began to joke that we were ready to take on “Parker’s Medical Marathon”….He had 7 medical appointments at Shands UF Health.  Last week was totally exhausting with some good news and some not so good news.  We are processing everything and Parker has a lot more appointments in the future.  The glorious news is there is no tethering on his spinal cord; so there's no urgent surgery needed, and he can go to the JA Conference.   We really needed this small miracle.  He does have some spinal damage (35% curvature with scoliosis), swelling with ligaments/tendons, and herniation in thoracic spine (that was a surprise because he has pain in lower spine and neck, not this area). 

Next steps, we must deal with his scoliosis, the numbness in his limbs, his disfunctioning bladder and his bowel issues (pain in left quadrant and a bit of again).  All these issue could be related.  So the docs collectively feel we need to see the head of pediatric orthopedics, since she is a scoliosis specialist and scoliosis is a pediatric issue.  We have also been referred to neurology and they will team together to try and figure things out.  

In addition, we have scheduled a colonoscopy to see if Parker's motility issues have progressed and to hopefully figure out the source of the lower left belly pain. There are also issues with his bladder/urine...but still need more info.

Rheumatology was an intense visit. His biggest complaints are his neck and shoulders.  He is going to try massage therapy in this area.  His newest biologic shot doesn't seem to be working.  We are giving it 2 more months, but then she doesn't know what to put him on because he has exhausted all the biologics, except one (and not so sure that it will work with what is going on).  They also scheduled an ultrasound of multiple joints.  When scanning his left ankle and foot, there was a gasp...it does not look normal at all and bones could be crumbling; and there is something else going on because it looks like there is blood flow on the ultrasound where blood flow shouldn't be happening.  This could indicate inflammation.  So, now we are scheduling an MRI of that foot and ankle, too.  And then, we discovered his papilledema (swelling behind eyes) is back.  I cannot even begin to tell you how my heart sank in that moment.  His vision is blacking out again with change is positions.  So we go back to neuro-ophthalmology at Bascom Palmer.

His tibia breaks are healing but not fully healed yet.  He is pretty ticked off that the doc is making him use the wheelchair at conference, to get to and from locations, but then he can get up and walk, no more than 1,000 steps this week and then 2,000 next.  Each week he can add 1,000, until he hits 5,000, when we go back to doc.  He will start PT in 2 weeks.  He is excited about getting back to PT and hopefully ditching the wheelchair.

We are all trying hard to focus on the good...that his spinal cord is ok...but Parker and I are really exhausted and feel so defeated with all the other news.  We know that Parker’s Medical Marathon is not done and we are pacing ourselves.  I guess this is why they call it “chronic illness”.  This morning I saw a quote that spoke to me…”The only impossible journey is the one you never begin.”  This journey has been really difficult this summer. Although the path is not one we would have chosen, we are hopeful it is taking us where we need to go.

Tuesday, December 18, 2018

OUR Purple Playas Foundation is Up and Running!

For our "non-Facebook friends", we are so very excited to announce that our family has started a non-profit: Purple Playas Foundation!  And we have a website!  Wahoo!  Go check it out at:  https://purpleplayasfoundation.org/


The mission of the Purple Playas is to provide support and resources in the area of pediatric chronic illness and to gift smiles to children and their families.
Our 3 Goals:

  1. Provide social-emotional resources and information on coping with medical trauma to support families and children impacted by chronic illness. 
  2. Provide funding and resources to providers/families of children with chronic illness to bring smiles to children’s faces. For example: funding to camps that support children with chronic/complex illness, food/gas cards to get to treatment, gaming systems for hospitals, durable/medical equipment not funded by another means, family fun days to connect families, etc. 
  3. Support fellowships/scholarships in high need pediatric care with a critical shortage, beginning with pediatric rheumatology. 

We also have our first fundraising event scheduled for March 29 and 30, 2019!  We are hosting our very first annual Purple Playas Charity Golf Tournament, preceded by a “Pairings Party”. Our Pairings Party is sure to be loads of fun with our engaging host, yummy appetizers, and auction items. And we will auction-off some local celebrities to the highest bidders to join your golf teams the next day.  Tickets to the Pairings Party are $25 and anyone is welcome.  And if you are interested in attending, golfing, sponsoring, and/or donating for our auction, please contact us on our website and we would be happy to send you the information.

You can also visit us on Facebook or Pinterest.  Just search Purple Playas Foundation and we will pop up with our logo.  

Wednesday, August 22, 2018

Tuesday, August 21, 2018

Loose Screw and Stronger Than Titanium


First off, Parker is doing great, especially considering the major surgery he just endured.  We can’t even begin to tell you how proud we are of his “stronger than titanium strength”, his patience with the “unexpected”, and his resilience.  I am marveling at his growth since this time last year, when he only had one foot repaired.  There have been some frustrations that normally would have had him ranting, but he really has kept his cool and been polite regardless and he cried/complained when we were alone in the room.  This is huge, considering how little control he has over things right now.

Secondly, he is on the floor he adores, with the nurses he loves and who know him well.  That is a huge blessing since they were going to try and put him on an adult floor, because you know our kiddo is a man-child now.  Being on this floor gives him some predictability and the staff has amazing kindness and love.  The nurses are incredibly special to him because they care so much.  Plus they have watched him grow over the years.

Now for what HAD to be done…The left foot went as expected and even a little better than expected.  The surgeon was able to get the entire broken screw out of his foot without damage.  That was huge, because he really thought he would have to leave the back half of the screw in.  He used the bone harvested from Parker’s hip to repair the left subtalar fusion and added a new titanium screw.  Then, he went into the right foot and unfortunately there was a screw loose in addition to the cadaver bone failing.  So the loose screw was pulled out and he reinforced the bone with the harvested hip bone and put in a smaller screw to fuse the foot again.  The left foot/ankle is casted and the right foot is splinted.  Both feet/legs are numb from the epidural, which is awesome.  The left hip is screaming at him. They are working on controlling that pain with oral meds, so he can work on movement in the hip to get ready to start practicing transferring from the bed to his wheelchair without using his feet.  Most of that hard work will start on Thursday when the epidural is removed.

In the meantime, he will get SI joint injections.  Also, the nephrologist just called to share that the results of his 24 hours urine study didn’t show improvement and that she wants a med increased and has requested an ultrasound for another possible kidney stone.  I guess we are in the right place … so that is being added to the protocol for today or tomorrow. 

In addition, his lungs have been a little mean.  He has needed to use a rescue inhaler and do some lung exercises.  He has worked like a champ all morning and is now resting…didn’t get much sleep last night. 

We are pleased with his progress thus far.  He is in good spirits and loved having his brother drive into town last night to see him.  Once again, we thank all of you for your never-ending support.  Our family is most blessed to have such good people in our lives.  We love you all.


Saturday, August 18, 2018

Surgery…Again!


Parker asked me to update everyone on the craziness with his feet.  If you follow us on Facebook, you already know that he has bilateral foot surgery scheduled for Monday at our local pediatric hospital.  If this feels like déjà vu…well, it feels like that for us too.  This is the 4th time Parker is going under for his feet/ankles and for a total of 6 surgical procedures.  His disease is making things way more difficult because his body is seeing the cadaver bones as foreign objects and rejecting them.  Then they disintegrate and get reabsorbed back into his body leaving an open space where bone should be.  We have just decided that his body doesn’t like “dead people”. 

So here is what is happening:  the cadaver bone in his left foot is completely gone and the open space must have created such a torque in his step that it snapped one of the 3 screws in that foot right in half.  Yes, he is stronger than titanium. 
Broken titanium screw

So, the surgeon is going to try and remove the broken screw, but he may have to leave the back half in, if the bone around it is too brittle.  In addition, the right foot’s cadaver bone is hanging on by one corner and is very lacey. The doctor is going to replace both of the cadaver bones with bone harvested from the crest of his own hipbone. 

He is expected to be in the hospital for a week and while he is in-patient, he will also get injections of cortisone in his SI joints.  These joints have gotten progressively worse. So, this should help not only his joints and lower back but also some of the pain that will come with being bed-bound for a while.  He will be non-weight bearing on both feet; and we know that recovery will be at least 3 months before he can walk again.  One plus, is he has gone through this before; so he knows pretty much what to expect…one negative is, he has gone through this before and knows what to expect… 

Please keep our kiddo in your thoughts and prayers.  Much love to each of you.

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