SUPPORT PTAK FAMILY'S LOSS OF PAULA AND FUTURE

~AFTER THANKSGIVING, 2024 UPDATE:

DECEMBER 01, 2024:

Our darling angel, Paula, wife, mother, daughter, daughter-in-law, sister-in-law, aunt, friend, coworker has become one, and she now flies high amongst her spirit animal, the hawk.

We are devastated and gutted beyond measure.

Paula entered Paradise on Thanksgiving night, November 28, 2024 after 4 PLUS years of continuous battling this insidious disease and never catching a break of remission and prolonged positive news.

She passed peacefully and beautifully surrounded by dozens of people who meant the most to her.

We are now left with shattered hearts, especially her most immediate family and loved ones.

This loss is palpable and impossible, particularly on the day one is supposed to be sitting around a dinner table giving thanks rather than saying goodbye to someone so very loved and watching them slip away into eternal life.

As the Christmas season is upon us and the holiday which Paula loved most, Jay, Kemri and Jason are left trying to put one foot in front of the other and navigate life without the center of their universe guiding their way. HOW?? Somehow they will.

The season of joy, family and companionship is one which will never be the same for them. They will be determined do their best and make Paula proud even with their future so uncertain and sad without her.

Please consider supporting them so that the emptiness they feel with their world crashing has a little less uncertainty for them.

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****WEDNESDAY, NOVEMBER 20, 2024 UPDATE

ALMOST ONE WEEK BEFORE THE MOST GRATEFUL/THANKFUL DAY OF THE YEAR

Hi all,

Please please spread the word!!!

Not everyone has social media or facebook, etc. for that matter.

This is *NOT* the news we were praying for.

BUT, not only do not count Paula out of the game yet, BUT God never takes a vacation.

As my Italian father used to say – STOP HANGING THE CREPE!!!

This past Monday, November 18, 2024, Paula’s Chief Oncologist, Dr. Justin Gainor, met with her and Jay and laid all of the cards on the table.

The feasible and worthwhile options just did NOT exist for the current status in which Paula faces.

PAULA IS CURRENTLY HOME…IN HER OWN BED………ON HOSPICE.

This news is DEVASTATING for all of us in the Ptak Army.

But we march forward with tears in our eyes and determination in our hearts and spirit - as Paula has always and will always do...with prayers, love, and yes, walking beside her and lifting her and the entire family up….ESPECIALLY DURING THE MOST ALTRUISTIC TIME OF THE YEAR.

Paula being Paula, took this news on the chin, found her silver lining and said – everything will probably be fine (please take this with its “tongue and cheek” meaning).

For the rest of us, we were just gut punched.

Again, finding us in the midst of a horrific shit storm and having yet again, to accept life on life’s terms, and hating it, we try and do the only thing we can do to try and make a difference.

We have zero control in life besides our own actions. God and only God drives the proverbial bus.

Please consider the following – spreading it on your own personal page.

This is our way to help Jason Sr, Paula, Kemri and Jason Jr.

THE HOLIDAYS ARE NEARLY AMONG US!

Since the gift of perfect health is priceless, and we are unable to control that…let’s do what we can control and give the kids and family the Christmas they so deserve…our generosity and the stress of finances unburdening them in order to provide present and future security.

09/13/2024: UPDATE:

Paula has been on her new medication Capmatinib for a couple of months now. She is doing better, but still every single day has to live with that anything and everything can change on a dime. She has recently had scans, and the chest and abdomen look great. There ARE some new spots in her brain. HOWEVER, her care experts are thingking that they could be from the period of time prior to the new treatment of Capmatinib when the cancer was taking over her body. She had bloodwork yesterday, and as of today's virtual call, it looks better than the last time they took it.. God is in the details, and is good....always. Thanks be to God.

Paula and her family need us now more than ever.

Big Jay has recently (this week) gone back to work after being her 24x7 unwavering champion. His pay has JUST started to trickle in from being out for months supporting the love of his life. The car has been a source of a lot of stress and repairs lately, and with fingers crossed, it will stop leaking oil finally!!!!

If anyone has not yet been able to give - please know - every single amount is appreciated and will help alleviate the stress that this horrendous disease has robbed this family of. Please from the bottom of my heart, consider donating to the gofundme here.

In addition - THIS SUNDAY - September 15, 2024, there is a SEPARATE benefit being organized by Paula's brother, Jeff and his badass wife, Ashley Landry starting at 1pm - cover charge is a $20.00 donation and there are tickets to buy with amazing prizes of gift baskets. The benefit is held at the Eagles Hall on Litchfield Street in Leominster, Massachusetts. Please go and support the family.

Cancer affects EVERYONE and it takes a village of support - ALWAYS.

Thank you again for your consideration.

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ORIGINAL POST:

Imagine being approximately 30 years old, and having 2 happy, healthy, thriving, and beautiful children 10 and under; Kemri and Jason Jr.

You have a husband, Jason, whom you adore and loves you endlessly.

You have a full-time job, and life is just steaming forward as you pursue the American Dream.

Then horror strikes out of the blue.

One day, you start to not feel well.

No big deal.

It happens.

But, then you don’t feel any better.

You feel worse.

Over a period of time, you start chasing different doctor diagnoses.

…misdiagnoses…

After visiting several hospitals, you end up at Massachusetts General Hospital in Boston with a Stage 4 determination of ALK Positive (ALK+) Lung Cancer.

The ONLY silver lining in this storm is that she is receiving care by the most world-renowned doctors, nurses, care takes and hospital for this rare type of Cancer: Dr. Justin Gainor, NP Liz Krueger, Dr. Dejan Juric, and Dr. Henning Willers.

For the love of God and all which is holy, how can this be?

When you make plans, God laughs at them.

Life can change in the blink of an eye, and most unfortunately, did for the Ptak family...FOREVER.

Life has never been the same since that day…and never will be.

Imagine this is your life.

Paula never smoked.

Stage 4 cancer - means no cure – with a finite conclusion.

By the way, what the hell is ALK Positive Lung Cancer?!

In a nutshell.

ALK (Anaplastic Lymphoma Kinase) Positive (ALK+) lung cancer is primarily a cancerous tumor whose cells containing an abnormal configuration of DNA.

It is a genetic alteration of the lung cells’ DNA that causes these cells to grow abnormally and behave abnormally and ultimately behave as cancer cells.

ALK is a gene that is present in the body as an embryo.

It is a gene that aids with gut and nervous system development.

This gene is supposed to be “turned off” while you’re still in the womb.

However, if this gene is “turned on” again and joins/fuses with another gene, this can cause an ALK rearrangement (otherwise known as an ALK fusion).

If this fusion happens, it can cause ALK+ lung cancer.

As these cells begin to grow in the lung, they can potentially spread to other parts of the body.

In Paula’s case…they did SPREAD…to her brain, bones, fluid surrounding her heart, and now…her liver.

….only about 4 PERCENT of lung cancers are ALK+.

Leave it to Paula to be “extra.”

Through the time I have known one of my dearest friends, she has gotten the shit absolutely beat out of her.

Last year, Paula spent most of the spring and summer in the hospital with fluid building up to the point of LITERS of fluid around her heart being drained from her body.

She watched the beautiful weather and everyone enjoying life and summer activities through a window getting poked and prodded and in the most physical discomfort one can bear.

Most people would give up and put a bookmark in it, and say “I’m done…UNCLE…no more.”

However, Paula does what she does best.

She puts her loved ones first, and carries on and says everything will be FINE.

She loves with her whole heart and to her, everything will always be fine.

She goes to infinite games for her kids, strives to make memories, tournaments in Canada and never lets this stop her…even if someone has to push her in a wheelchair because she cannot breathe.

She shows up and is present for everyone and everything.

ALWAYS.

To say she’s one of my heroes and my person, would be an understatement.

She makes my “ride or die” list.

We are almost at 4 years of the anniversary of Paula’s first diagnosis.

Time is a thief.

This year started hopeful with a hockey tournament 9 inches from Canada.

Things were looking up, and then slowly but surely, life upended yet again for the Ptaks.

Chemotherapy was every 3 weeks.

Paula was sick for 2 of those weeks, and able to function for one of those weeks.

She ached, she was nauseous, and she was exhausted.

She still showed up despite feeling horrible, and drove to New Jersey 2 weeks in a row for her kids’ ball hockey tournaments.

One week with her and Kemri alone, and the next with her family.

Just when the doctor cleared her to spread out the chemo to 4 weeks and be able to enjoy life more, the cancer reminded her that it was still there…but not fully in charge…..thank you, Paula.

In early July, her scans revealed that the cancer in her brain started to grow again, and the tumors in her lungs grew significantly in size despite the regime of chemo and pill; Alectinib.

And also…<gulp> new spots were found in her liver.

How can this be…yet again?

Why Paula….why anyone?!

Why do bad things happen to good people?

To the best of what was told to her, plan A and B were for her to get different types of chemo depending on what further testing would reveal.

These kind of chemos would rob her of her hair, and not just make it thinner.

She would be bald.

Another “gotcha” for Paula to swallow and accept…yet again.

Thus, not having any control on her health, Paula did the only thing she could control. She took it on the chin.

She gave the middle finger to the status of her hair and had the kids shave her head completely.

As it was revealed later after the test results, it was not necessary for chemo at this point.

They went a different direction for her treatment.

And like everything else, Paula took it, and added her own positive spin on it.

Oh well, she said, and carried on, readjusting her proverbial crown and sash.

So now Paula’s hair matches her inner badassness.

Go, Paula!

As the days progressed after that latest horrific news, Paula’s breathing started to be hindered...dramatically.

She started using oxygen at home frequently, and it was difficult to breathe.

She spent most of the days in a dark, air-conditioned room, sleeping and trying to wrap her head around this new diagnosis and her own potential mortality.

Paula – being Paula suffered as much as she could, in silence, saying she didn’t need anything….but time.

On Thursday July 11, 2024, she had a follow-up in person appointment with Mass General Hospital (MGH) to finalize their plan of attack for the latest expanding growths in her lungs, brain and now new ones in her liver.

They admitted her immediately without question based on her present condition to inpatient hospital care.

After liver biopsy results and a subsequent CT scan at the hospital, the very best news of the worst news was revealed.

Amen….

The ALK gene had mutated, and that mutation was a new mutation of ALK now found in the liver.

This new mutation in her liver is called MET (Mesenchymal Epithelial Transition).

Again, in layman’s terms…when the ALK gene is mutated, it tells your body to make a protein that does not work the right way.

The ALK+ gene mutated to produce this MET mutation – now present in Paula’s liver.

Paula is the 10th (!!!!!!!) person WORLDWIDE (!!!!!)to have the ALK+ mutation with this MET mutation. Of course she is. Did I mention that Paula is an over achiever?!

On Saturday, July 13th, Paula was sent from her normal hospital inpatient room to the Intensive Care Unit because her breathing and blood labs were degenerating.

Kemri and Jason Jr. were literally in Canada living their best lives in a ball hockey tournament with friends.

Furthermore, they had ZERO comprehension and knowledge that this horror was even unfolding in Boston with their mom.

Paula and Jay put on brave faces and as always, put the kids first.

Paula was placed on a new, approximate $33,000 targeted drug specific to this mutation called Capmatinib.

However, there is always a new wrinkle.

With Paula’s labored breathing, there was a possibility that she could be unable to start the treatment.

If she swallowed the pills, coughed, or choked, she could aspirate to her lungs…and die.

With the perseverance and fierce advocation for Paula, by Jason Sr. and Laurie, Jason’s mom/aka Paula’s second mom they vehemently pushed and did not accept the answer “NO,” to get the nurses to give Paula the pill.

They were also blessed with the expertise and reassurance of an experienced ICU nurse that assured them she would not let anything bad happen to Paula while she was under her watch.

Ergo, the targeted therapy Capmatinib pill was administered to Paula, and healing began…slowly.

However, before the pill could fully work, and its intent was realized, the very worst news was delivered to Jason Sr.

Paula’s condition was depleting steadily, and the doctors told Jay to gather all loved ones to possibly say their goodbyes to Paula as the following 48 hours were imperative to see how the treatment played out with her breathing and lab work.

Her kids were in another country and uninformed.

Do you know what Paula’s response was to whether to let them know….?

She told Jay that she wanted them to finish the tournament….which they did.

Less than one week later, things are seemingly on a different path.

Everything is trending in the overall right direction!!!!!

Her lab work has improved, and breathing is less labored.

We have thanked God over and over and over, and know that only He is in charge.

We are endlessly thankful to God, and everyone praying.

We are also hopeful for the future.

Without hope, we have nothing….

Besides the realization of health and taking it for granted that we will always have the best it, life still goes on.

It’s like the tide – it always recedes, but comes back in, sometimes burying you with sand and water.

Paula and Jay now only have one income with 2 activity involved children and pets.

Paula is not working and is rightfully considered disabled.

Additionally, when Paula is sick, Jay is 100 percent present mentally and physically for her by her side.

He does not go to work, and misses income during that period….sometimes lasting weeks.

The world we live in today, as you know, is full of unbelievably, overwhelming expenses.

Kids add a whole other dynamic….and pets.

Kemri and Jason Jr. deserve the world and the chances that every other kids with two healthy, loving parents deserve.

For them to maintain selflessly for their kids (which have to live every day with a gravely ill mom at their young and tender ages) is impossible with their current situation.

Please survey your own life…do we know which end is up these days?

However, dear family, friends, peers, people that do not even having the pleasure and honor of knowing her…WE CAN HELP.

PLEASE HELP.

Many many people have asked how they can help. This is literally how you can:

If you have read this far, you are invested and caring enough about Paula and the Ptaks…or maybe unfortunately, you can identify.

We are all blessed to have Paula in our lives or are fortunately connected to her in some way.

We can take some of the stress away from this family and alleviate some overwhelming burdens from them so that they can focus on Paula recovering and make it to the finish line of immortality.

We can try and have them maintain a normal life when it is anything BUT that.

Paula literally could be your spouse, child, sibling, parent, friend, relative, peer….YOU.

She got dealt a shitty hand, but she always picks herself up and dusts off her crown.

I certainly would not be as graceful.

Would you be?

While we are unable to cure her, we can control some things.

If you know Paula, you know beauty – on the inside and out.

You know the sparkly personality, the talent, and the spitfire she is.

She is strong and she carries on – even through her suffering.

She loves her people fiercely with her whole heart.

She is present and she is supportive.

In an nutshell…you WANT Paula to be your friend.

You want her always in her life.

She always adds a period to the end of my sentence when I tell a story about “fucking Paula” followed by my laughing…HARD.

Whether you know Paula or not…she is the epitome of life and living it.

She’s the sun in my sky and her kids.

She makes me laugh and she is one of the best people I have ever known.

My life is better with her in it.

I never want to know nor even comprehend a thought of a day where she is not in my life.

For the love of all which is holy and from the bottom of my heart, I’m begging…please help in whatever way you can in order to diminish some of the overwhelming load off of their shoulders.

If you think your amount does not matter…it does.

If you think you cannot contribute much, that is enough.

A dollar, five dollars, more than that, less than that….is absolutely overwhelmingly appreciated and perfection.

You CAN help.

Whatever that can be offered is in and of itself a gift….if it comes from your heart with the spirit of selflessness.

It takes a village.

This money will be used to alleviate the expenses that it takes to run a household and family of 4 with pets to survive and thrive day to day while focusing solely on getting Paula as much quality of life AND to beat and win against what unfair hand she and her love ones were dealt.

I started this plea out with asking you to imagine yourself being Paula with one day your life is driving along on the road, and the next day it hits a concrete wall.

It literally could happen to anyone of us, and I pray it never does.

The Ptaks live a nightmare and are reminded of it daily. Paula is presently 35 years old. That's insane. She is young and full of piss, vigor, and life.

It takes no break nor vacation and is a constant reminder of who is seemingly in charge.

With your offering, let’s not let any part of this disease win by decimating the life that the Ptaks' built in happier, healthier times.

Thank you everyone for your time and consideration.

May you and your loved ones always be blessed with the best of health and happiness, because that is the only thing that matters in this world.

Peace, and gratitude….more than you could comprehend,

Paula’s family and friends.