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About Team Tulio

The Journey Continues (2018)

Team Tulio’s accomplishments since inception in January 2014 have been astounding, only with the help of those near and far who have come on the journey with us.

While fundraising has always been essential, the activism and support of generous and selfless people has been amazing to witness. Our hope is we can continue on, in Kelly’s honor, to help and support others. 

Love * Laugh * Breathe

 

The Journey - A New Beginning (written April 14, 2016)

"She just got her Golden Angel Wings."

"Heaven just got a lot funnier."

God Bless Kelly, Dominic, Dominic Jr., and Raylin. You have all of our love, always.

Everyone's world has been forever changed, and we choose to celebrate a beautiful life.   In Memory of Kelly A. Tulio July 29, 1970 - April 14, 2016

"She fought until the very end. I knew it too.  Love, Raylin"

 

The Journey - Part 5 (written April 5, 2016)

We appreciate all of the care and concern and realize we have been vague, so we wanted to provide the most recent update.  A lot of this information goes back several months, and is a lot to take in.  Everyone believed at some point we would have only positive news to provide, but unfortunately Kelly has been riding a terrible and unimaginable rollercoaster ride, is currently in the hospital and in the midst of another grueling and scary battle.  Plus, as always we want their children and their privacy to be a priority.

As mentioned below in “Journey Part 4”, in September 2015 Kelly was diagnosed with PTLD, Post-transplant lymphoproliferative disorder the name given to a B-cell proliferation due to therapeutic immunosuppression after organ transplantation. These patients may develop infectious mononucleosis-like lesions or polyclonal polymorphic B-cell hyperplasia. Some of these B-cells may undergo mutations which will render them malignant, giving rise to a lymphoma.  In some cases PTLD  will progress to non-Hodgkin's lymphoma.

Kelly was treated with aggressive chemotherapy regiments several times through the fall of 2015, which again, was her SECOND bout and then culminating with a STEM CELL TRANSPLANT in December 2015. The stem cell transplant too, was a very aggressive and grueling process that had Kelly hospitalized at length, and her recovery was then long at home.  However, as usual Kelly fought through it, focused on her family and getting well.  

While still recovering from all that she endured in late 2015, and actually while just starting to feel better - Kelly started to develop and recognize some concerning symptoms:  one of which was fast weight gain which was fluid retention.   She called her medical team immediately and then Kelly and Dom met with the oncologist in early March, 2016.   They were told that the results of her latest PET scan were inconclusive and that further diagnostics were necessary.    Ultrasound identified several spots, including an orange sized tumor near her kidneys.   She was readmitted to The University of Pennsylvania Hospital on March 13, 2016 where they began treatment for complications with kidney function due to the tumor location.

Due to this being her THIRD time being treated for PTLD - Kelly is no longer eligible for further chemotherapy treatment, however, her oncologists are trying a very new and VERY aggressive immunotherapy drug “Blinatumomabhttp://www.prnewswire.com/news-releases/phase-3-study-of-blincyto-blinatumomab-met-primary-endpoint-of-overall-survival-in-patients-with-b-cell-precursor-acute-lymphoblastic-leukemia-300215641.html .  

Ideally, and known through clinical trial the drug is to be administered in a progression 24/7 which takes several weeks.  Because of a time issue, and the fact that her medical team is also monitoring and treating other arising issues, the doctors are increasing the dosage of Blinatumonmab that she is receiving ahead of schedule, something that has never been tried before.

Yes, this is all very unbelievable, even her team of doctors at John Hopkins, and Penn are dumbfounded.  PTLD at onset is to be “extinguishable” and she is on her 3rd diagnosis in 1 year.  And just know, the list of setbacks and other symptoms and issues that have arisen is too long to list.  

While we agree, this news makes us all feel so helpless – and Kelly is the only one who can physically do the fighting, WE CAN ALL help with praying, hoping, wishing, and KNOWING SHE WILL AGAIN OVERCOME.   Team Tulio supporters have already proven time and time again prayer and positive thoughts work, so please breathe in – breathe out and continue to pray, hope, wish, and know she’ll be ok.

As you can imagine, Dominic has been by her side, the only place he should be, which has kept him from working.   Therefore, if you want to help in additional ways, you can.   We ask you to visit our website and see HOW TO HELP, no donation is too small to help The Tulios while they focus on her health and getting her home to be with her children.  $1, $5, etc, no amount is too small as there are so many of you desperate to help and every penny adds up.  If you have any questions, please email teamtulio@yahoo.com as Dominic has been receiving tons of calls and text which are awesome and appreciative, but he has constraints of time and we want him to spend his time with Kelly and their kids so we are trying to help him by playing middle man in communications.

Also, we are hosting another golf outing – a great event that is in its 3rd year.  SAVE THE DATE – Saturday August 27th.  Please consider sponsoring (or asking your company to sponsor), playing a round, or coming to the happy hour and dinner.  More details to come, and we will post on here on the website.

One of our supporters just told us a story, that they met an 89 year old man, working as a volunteer greeter at an event, and after a brief chat he told them “always remember, know matter ones age, every day is a victory and on every one of those days we should tell at least one person we love them so they feel good and smile”.  We believe at the heart this is Kellys motto, and once she bounces back she will get back to making us all laugh and smile!  Until then, hug your loved ones, say a prayer for Kelly who is suffering and fighting, and consider helping The Tulio Family.

Thank you all for your messages, concern, love and support – it means the world to Kelly, Dominic, Dominic Jr. and Raylin, and it helps more than you know.   Much love, Goodnight.

 

The Journey - Part 4 (written October 5, 2015)

Kelly Tulio is currently fighting a re-occurence of PTLD (Post Transplant Lymphoma Disorder).  Kelly is inpatient at the hospital now receiving treatment.  She will require another 2-4 rounds of treatment (TBD), all of which will also require inpatient stays.  Dominic has has been out of work for the last several weeks focused solely on caring for Kelly, and their children.    Kelly is a WARRIOR, and will no doubt power through this most recent set back - but our help continues to be needed.   Many folks have inquired, and therefore we are reminding folks how they can help, which is several ways.  Prayers, love, friendship, and positive thoughts are always key however, right now we are getting back to fundraising, so we can try to ease some of the financial burden that exists.   WAYS TO HELP:  http://www.teamtulio.com/how-to-help/

We will continue to keep everyone informed via this website, and our Facebook page - so please check back.

The amazing outpouring of love, support and prayers has been overwhelming and continues to be extremely helpful to help them all stay strong!

Hug your loved ones!

LOVE, LAUGH, BREATHE

Team Tulio


The Journey - Part 3 (written April 21, 2015)

Eight months post transplant update: A letter from Kelly and Dominic.

We would first like to thank each and every one of you for your contributions to Team Tullio. Whether you have given financially, given your time ,donated goods or services and/or kept our family in your thoughts and prayers. Your love, kindness and compassion for us and especially our children is appreciated more than words can express. The journey continues for us with Kelly's recent diagnosis of PTLD, which we consider only a minor setback on the road to her full recovery. The ability to breathe overshadows all and is a precious gift for which we are eternally thankful. We would not be anywhere without our faith in God, His protection, Him guiding us and our decisions and giving us strength for each part of this journey. His gift of you, our friends and family. Thanks be to God , and each and everyone of you.

With love, Kel and Dom

 

The Journey - Part 2 (written September 2014): 

On August 15, 2014 Kelly Tulio had a successful bilateral (dual) lung transplant, which is absolutely incredible news, and the day that changed The Tulio Family's life!  We must also recognize the importance and immense meaning of the gift the organ donor has given to Kelly and her family. Our thoughts are with the donors family. 

Upon receiving a call from Johns Hopkins Hospital in Baltimore at 9:15pm on August 14th that lungs had just become available, Kelly was air lifted down via medical helpicopter from Philadelphia.  On August 15th around 10:30am the transport surgical team took her back for surgery.  An approximate 5+ hour surgery ensued in the afternoon, went as doctors "anticipated & expected", and Kelly as always stayed strong for the course!!  August 15th - 4:30pm Dr. Shah came out to Dominic to report "all went well, and she is breathing room air".  24 hours later Kelly was "awake & alert, and following simple commands". 

On August 16th, Kelly’s cousin wrote the following & we wanted to share it:  "I just had to share my thoughts somehow. It is just something to good, too beautiful not to share.  My cousin Kelly has struggled her whole life fighting Cystic Fibrosis, and as many of you know much of my time has been spent with her two beautiful kids, time that I will always cherish! Kelly has been and will forever be one of the strongest people I know. Her faith and resilience in this long and hard fought battle has been one that I have witnessed from the sideline...and in my short life have never seen so much determination and endurance. I will never fully understand the amount of effort she puts in day after day simply just to breathe. Even with all of her burdens she makes everyone around her belly laugh till it hurts. She shows nothing but grace and humility while quite frankly kicking Cystic Fibrosis in the ass. I am eternally grateful to God for blessing her with these healthy new lungs and for getting her through the transplant. I can't put into words how excited I am that she will now be able to run around with Dominic and dance around with Raylin. She is a true testament that the toughest and scariest times accompanied by faith and blessings from God have the capacity to bring the most amazing moments in life. No matter how difficult it gets, I have learned from Kelly that faith, love, humor and serious determination, can and will get you through anything. Good things really do happen to good people. God is good! So happy for the Tulio family! Please continue to pray for Kelly and her recovery, as well as a prayer for the donor and family."

August 18th, less than 48 hours post-transplant Kelly walked 70 feet thru the ICU ward breathing on her own!  She as always, was astounding those around her.

September 4th, Kelly was able to go home and see her children after a month of not seeing them.  This was truly an amazing day!

September 15th was 30 days since Kelly’s dual lung transplant.  She is truly an inspiration, and a force to be reckoned with.  Kelly continues to take one day at a time, be diligent in following all rules to take care of herself, and take positive steps in her recovery. 

We ask for your continued prayers for Kelly and her family as she battles through the lengthy recovery process, which currently includes weekly trips back to John’s Hopkins.  She continues to amaze us all, and we are very blessed.  We will continue to post updates of Kelly’s progress.

Team Tulio’s fundraising efforts have only just begun.  This journey could get close to $1 Million dollars, a staggering amount, and obviously worth every penny.  The cost of a transplant, including preliminary testing, the surgery itself and post-operative recovery costs, current & lifelong anti-rejection medications, travel, vehicle gasoline, and so much more.  Also, Kelly Tulio will always have Cystic Fibrosis, and there are lifelong costs associated.  Please continue to support our cause, and spread the word. 

Team Tulio is helping the family, raising organ donor awareness, and long term supporting others with Cystic Fibrosis.  On behalf of Kelly and Dominic, your inquiries, consideration, participation, and generosity are greatly appreciated.

Hug your loved ones!
F.C.F.

 

The Journey - Part 1 (written January 2014):

Kelly Morrissey Tulio has Cystic Fibrosis; she was diagnosed at 18 months old. Over the next 41 years she managed to keep this fact mainly a secret, remain somewhat healthy, achieve her MBA and multiple certifications, have a successful career in Finance, get married, have two amazing children, and so much more. All born, raised, and still living in Willow Grove, PA. Kelly, her husband Dominic (both Upper Moreland High School graduates) and their children have touched the lives of many people over the years. Kelly has consistently defied the odds, as she is focused, positive, smart, determined, and clearly one of the strongest people you'll meet. Most importantly, she's the funniest person, with the best laugh, and always entertaining!

Most people are unaware of the health issues Kelly and her family have faced. Kelly gave birth to their first child, young Dom, two months premature. After 1 month in the NIC Unit, he came home with a monitor for another 8 months. Her husband Dominic encountered his own health crisis 10 years ago. While Kelly's mother, Linda, was losing her long-fought battle with breast cancer, they were told Dominic needed a Kidney transplant. Dominic received a living donor transplant from his mother, Alexis, in what has shown to be a successful surgery, but requires lifelong aftercare.

Kelly has recently decided to begin the process of evaluation for a bilateral lung transplant. By nature of a bilateral transplant, Kelly will need a cadaver donor, limiting potential matches. For optimal results, she should be listed at multiple hospitals, but in order to accomplish this, she needs to travel near and far too each hospital for consultations and testing. These trips alone are extremely costly, let alone the entire process of their next challenging journey, exploring all options for Kelly’s lung transplant.

The fact is, for years their medical care expenses have been and continue to be unfathomable. They have managed on their own due to the financial planning Kelly handled well and their wise spending on what is now a one-income family. Kelly had to leave the financial career she worked so hard for and loved several years ago to focus on her health and the well-being of her family. Out-of-pocket expenses are piling up and will become unsurmountable before she even receives new lungs. After the transplant, they’ll have two "patients" in the home requiring lifetime anti-rejection medications, with two young children and increasing everyday living costs.

As a prideful family, reaching out for help is not something The Tulio's have ever done. Her loving family and supportive friends have begged them to let us help, and though hesitant, have finally accepted the offer. A fund has been finalized, many events are being planned, a website is in development, and tons of people are happily jumping in to help. We are spreading the word about how folks can help to provide them assistance, so they can focus on their health. Your consideration is greatly appreciated.

 

 

 

Love - Laugh - Breathe | Team Tulio