Join Jacob’s Journey with LFS

$9,345 of $10,000 goal

Raised by 83 people in 8 months
Created June 24, 2018
Jacob Tullo is an extraordinary 13-year-old.  He's an honor roll student, model big brother to his three younger sisters, and a friend to everyone he crosses paths with.  He's an easy going guy with a great sense of humor, a calm demeanor, and wisdom beyond his years.  He enjoys D&D, legos, pizza, and fishing.  Jacob collects rocks, keychains, and "ribbons".  

Jacob achieved his first two ribbons when he was less than a year old.  Gold for childhood cancer and grey for brain cancer.  By two he achieved lavender - the survivors ribbon.  But his journey was just beginning.  Jake was diagnosed with Li-Fraumeni Syndrome (LFS) - a predisposition for cancer.  Although Jake had conquered his rare brain tumor (Choroid Plexus Carcinoma) he was at great risk for other cancers to appear throughout his lifetime.  With the strong will of his mom, Kate, armed with endless research - Jacob began an intensive screening process for future cancers.  Frequent ultrasounds, lab work, brain MRIs, and full body MRIs became a normal part of Jacob's life.  Because of these screenings multiple tumors have been identified in benign stages in locations throughout Jacob's body.  Unfortunately after remaining stable for quite some time, our family has recently learned the heart wrenching news that Jake now has two malignant tumors in his right hip.  Upon informing Jacob of the results, one of his first questions was, "What ribbon now?".  We've awarded him the yellow ribbon for sarcoma/bone cancer and the multicolor ribbon for multiples. 

Needle biopsies have determined the tumors to be intermediate Chondrosarcomas.  These tumors are tricky and we are remaining optimistic that we will find the right path that will work in conjunction with Jake's complicated genetic condition.  We are seeking multiple opinions and options and although a path has not been fully determined - a surgery to remove these tumors and parts of his hip are most likely the first step.  We know these tumors have a high rate of reoccurrence locally as well as in other areas of the body.  Jake's already rigorous medical schedule has now become more intensive.  Jake continues to set an example for all of us through his resilience and positive outlook.  His insights on the upcoming surgery include turning to his mom and saying, "Isn't it amazing mom?  I get to take my first steps all over again!  You get to see me take my first steps again!".  

Friends and family have always come together to help Jacob and his immediate family bear the financial burden of his needs.  While we are now entering a new phase of Jacob's journey, we recognize that more help is required than we can provide without your help.  Financial donations will go towards medical expenses including medical bills and supplies - as well as maintaining transportation for the 6 hour round trip commute to and from the hospital and providing Jake with adaptations for a more accessible home while he recovers.  This assistance will also aid the family in maintaining daily bills so Kate can keep her focus on Jacob's care and his sisters.  We know Kate makes every effort to encourage Jacob to LIVE with LFS not in spite of it, and we hope that through our efforts we can show her that same support and love to allow her to remain fully present with her children on this journey.  Let's flood Jacob with the positive, loving energy that he's always putting out to others.  Please join us in Jacob's journey and may all your good come back to you.
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A quick update to keep everyone in the loop as we continue on Jacob’s Journey.

Jacob is home after being inpatient from Wednesday-Saturday. During his time at the hospital he underwent 2 surgeries and 2 rounds of chemo. A lot for anyone to go through in a short amount of time. While at the hospital Kate met with Jacob’s team of doctors. The doctors disclosed that the scans from last week now show active growth in his hip (impacting the soft tissue, bone, and bone marrow), as well as nodules in both of his lungs. He is facing 10 weeks of chemo, surgery, and then another 19 weeks of chemotherapy. Most of his treatment will be inpatient.

On a more personal note spending this time with Kate and Jacob has opened my eyes and my heart so much. I’m grateful for the moments driving into Boston, waiting together in pre-op and Jacob forcing me to do a “try not to laugh challenge” when he could see the worry on my face, and even for the more difficult times after surgery and after chemo. Jacob is incredible and although he’s feeling pretty down about everything happening right now he’s an inspiration whether he feels like he is or not. I’m grateful for his little sisters that make him crack a smile even when he doesn’t think he can. And I’m grateful for my sister because without her Jacob wouldn’t be able to continue to fight the way he has and will. Kate is so beyond intelligent when it comes to speaking with the nurses and doctors and just when it comes to knowing her child and his needs. They’re two extremely inspiring and courageous people that I look up to immensely.

I’ve ordered bracelets #JETpack (JET are Jacob’s initials and we are his pack) if anyone would like one you can contact me through email - E.zarnay@gmail.com
I’ll be selling them for $3 each

Thank you all for your continuous love and support and all your kind words to Kate and Jacob it means everything and more.

Jacob’s Auntie Lizzie
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With opinions from MSKCC, Mayo Clinic, and MD Anderson, Jacob’s diagnosis is Osteosarcoma. In the last two days Jacob has had prechemo appointments involving audiology, shunt X-rays series, echocardiogram, Jimmy Fund meeting, chest ct, pelvic MRI, and said goodbye to his physical therapist in Waltham. Jacob will begin a 29 week chemotherapy regimen on January 2nd. I can’t thank everyone enough for how they’ve come together to support my nephew, my sister Kate, and our family through the last six months as they have battled. Please continue to send prayers, love, and positive energy their way and if you’re able to, please donate, anything helps on the long road ahead. The needs of this family has grown as the majority of Jacob’s treatment will need to be inpatient in Boston, three hours away from home.
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We hope everyone had a great Thanksgiving, we spent the weekend with our family in New Hampshire - we have SO much to be thankful for!

What a wild few weeks - After consulting, doctors at MSKCC in NYC are standing by their pathologist’s diagnosis of a high grade osteosarcoma and they believe Jacob should already be on an intensive chemotherapy regimen. The further difficult news is that their radiologist in NYC question if his scans show a reoccurrence of the tumor at the hip surgical site. Jake underwent PET and CT scans in Boston last week to hopefully bring clarity. The facilities are working together to develop a plan going forward. We are also pursuing further pathologies at other hospitals.

We truly believe we are assembling the right team. We also believe we may never know what this beast is - but we’ve always been set on beating it. It’s hard to believe we are only at the very, very beginning.

The diagnosis of osteosarcoma is a devastating road - but we see signs of hope that his cancer is treatable. We did not have that same hope with a diagnosis of dedifferentiated chondrosarcoma. In the coming weeks we will be presented with treatment options to decide on. MSKCC is working with Boston to present our family with a joint opinion.

Jake has recovered well from his knee surgery. The BEST news is that tumor was a beautifully BORING and BENIGN osteochondroma - we are so blessed! He has begun physical therapy again and his first session was very frustrating for him. We know he will be back on top in no time!
— Kate

Just a quick side note from Auntie Lizzie — I want to thank everyone that has contributed to Jacob and his family over the last six months - whether it’s a donation or sharing this page every bit has helped more than you know. Your gifts of love have helped them with many trips (56 appointments this year) 130 miles each way to Boston, has provided Jacob with necessities post op, and has helped them survive the first leg of this battle. When the insurance has attempted to postpone scans or appointments while they gather more information from doctors, Kate has been able to keep appointments and sign authorizations knowing she can cover them should the claims be denied. Thanks to all of you, Kate has been able to keep searching. Our combined efforts have led us to what we’ve all hoped for - treatment options for Jacob. Please continue to share Jacob’s Journey ❤️ it means everything to us.
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Here’s an update from Kate:

What a crazy week!

The BEST news is that Jacob’s three month abdominal ultrasound and chest CT show no evidence of disease! His pelvic MRI looks stable but with some post surgery artifacts that the radiologists have recommended a baseline CT to evaluate. We are working with his oncology team to obtain that scan - but we are considering Jacob a NERD (no evidence recurrent disease). We are BLESSED.

Friday Jacob heads to Boston to have a tumor removed from his knee. He’s looking forward to putting this behind him and continuing to progress with physical therapy. His positive, easy going attitude continues to set an example for all of us... and he sure keeps us all smiling with his dance moves.

The other BIG news - we had a second pathology completed on Jacob’s tumors in NYC and it did come back differently than Boston. We are anxiously waiting for a team in NY to gather the information they need to make further recommendations for Jacob. We really aren’t sure what this could mean just yet and appreciate any positive energy you could send our way as we continue to seek HOPE.

We continue to discuss his diagnosis and potential options with Boston. Jacob’s team is helping us to coordinate our search for other opinions and options and we are thankful for that. We will continue with close monitoring as they develop a plan for his remaining tumors. And - - Yes, that was us broken down on the corner of Jimmy Fund Way and Brookline Ave Friday night at rush hour. Always an adventure!! Thankful for a pleasant tow truck driver who kept us smiling and that our van some how found it’s way to someone who returned an act of kindness by discounting the work by almost half. We have many more miles to travel.

Please send healing energy and light to Jake this week and guidance to all of the people joining together on Jacob’s journey with LFS.

Endless thanks.
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$9,345 of $10,000 goal

Raised by 83 people in 8 months
Created June 24, 2018
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