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#BrynnsArmy

$20,045 of $20,000 goal

Raised by 298 people in 8 months
Created November 1, 2018
Melissa Lonergan
on behalf of Jessica Lonergan Tobin
In February 2017, our lives were forever changed when we learned that our sweet two year old Brynn was diagnosed with a highly malignant and rare form of brain cancer, Anaplastic Ependymoma. She had a successful surgery, 6 weeks of radiation to her brain where she dressed-up as a princess each day, and has been monitored ever since to ensure that her tumor stayed gone. She bounced back amazingly and was a truly normal kid taking dance lessons, participating in soccer, swimming, and most recently learning karate with her 6 year old brother. We were convinced that she had beaten cancer....

A look into Brynn's past year:
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On a last minute weekend trip to Pennsylvania to visit Elmo and friends at Sesame Place, now 4 year old Brynn became oddly ill and was evaluated at Children’s Hospital of Philadelphia (CHOP) where we found that her brain cancer had relapsed, this time to a different part of her brain. 

It is our worst nightmare come true: our Brynn now has metastatic brain cancer and there is very little chance it can be cured.

CHOP is one of the leading hospitals in the world. We believe that she was meant to be in Pennsylvania this weekend to be close to these healers and helpers. On Tuesday 10/30/18, she had another successful surgery where all visible tumor was removed from an incredibly delicate area of her brain. She woke up from surgery telling jokes, moving her body, and with all faculties in tact – another miracle!

Brynn now faces another huge fight as we explore treatment options to give her the best chance at living a long, healthy life.

Her family faces numerous challenges in this second battle for their daughter’s life. Their family lives in RI and treatment may involve far distance travel and follow-up care out-of-state. This will include lodging & travel expenses, and additional medical bills as they seek the best possible care that insurance may not cover.

Become a part of #BrynnsArmy & help support #BrynncessTheBrave. 

Your positive thoughts, prayers, and contributions along with Brynn’s amazing strength and resilience gives us all hope that she will overcome yet another battle. Let’s make sure that Jessica, Jeremy, Braeden and Brynn know they are not alone in this fight.

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Brynn has officially been on her chemo (temozolomide) and Indoximod trial medication for one week. She had labs drawn today and there was some change, but nothing overly concerning at this stage. Her MRI results were okay as well, one area of concern that the doctors believe to be a blood vessel but that we won’t know for sure until next scan in 2 months.

We can’t thank everyone enough for the continued support. We learned that in addition to the chemo and lab tests, we will be responsible for every other MRI out of pocket because it does not meet insurance guidelines for “standard of care” which for our insurance is an MRI every 4-6 months. Brynn’s last MRI that we paid out of pocket was in November and was about $16000 (brain and spine was done) so I just want to let everyone know that every dime you’ve donated whether here or at the community fundraisers that others have hosted is being put to good use! We believe in this trial and want to keep Brynn on it as long as she is benefiting from it.

Brynn is doing well (as seen in these pictures). She is enjoying cheering on her favorite hockey team this week, she’s had energy for parks/walks, has visited the Pandas, gorillas, and orangutans at Zoo Atlanta, and has explored every Target in a 40 mile radius. She is somewhat tired by the end of the day, but with how busy she’s been it’s understandable!
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Brynn scanned on Feb 27th as planned, followed by a clinic visit. The initial read on her MRI scan was great but it was followed just moments later with a concern in her spine after the doctor received/reviewing the final report. Just minutes after this devastating news, we learned that Brynn was accepted to the treatment protocol we’ve been following closely in Augusta, GA - despite the promising clinical trial being closed. The very next day we learned that the neurooncologist wasn’t concerned any more with her spine. Up, down, up, and more up. We’ll hold on to this “up” as long as we can!

Last weekend was the amazing Princess Day celebration/fundraiser put on by the family of one of Brynn’s preschool besties. It felt like the whole town of Coventry turned out as well as some incredible support by local businesses. It was such a fun day - and in total over $8000 was raised!!

Please continue to share this page and Brynn’s story! We are so grateful for everything raised so far but even if people can’t donate we know the more people praying and thinking about our girl the better! We do know that we are looking now at roughly $8000/month for Brynn to remain on this trial for hopefully as long as possible. That includes the drugs associated with the protocol, the twice per month travel to Augusta, GA by plane with needing a rental vehicle, and the hotel/RMH stays. The goal for this trial is not a cure - but the next best thing - stability - to get to at least 18 months out from this most recent radiation to be able to consider full cranial-spinal radiation as a curative treatment. This trial has been so promising for the other children with Ependymoma - some kids have been on it for 2-3 years which is amazing! Our doctors feel this is our best chance to get Brynn where she needs to be.

Thank you all in #BrynnsArmy for all that you’ve done to support our little princess warrior and our family!!
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Brynn has continued to enjoy being home and getting back to her routine as much as her energy allows. She has developed something called Somnolence Syndrome from radiation, which is a known side effect of cranial radiation. She is sleeping about 16-18 hours/day some days. This could last 6-8 weeks more. When she is awake she does have the energy to do dance, karate and go to school about 3 days per week. She just begged me to sign her up for spring soccer, which Mom just got cleared for Brynn to do. She’s very much enjoyed visits from the Patriots’ End Zone Militia and going to the Providence Bruins games.

She has her first post-treatment MRI scheduled for February 27th in Boston. We are praying that she is NERD (no evidence of recurring disease) which is the best we can hope for, and hope she stays that as long as possible.

As always, much love to all in BrynnsArmy for the love and support for our sweet girl!
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Brynn’s proton radiation ended on January 16th, and after a couple of follow ups Brynn came home from Boston this past Saturday. She was so happy to bring all of our things home and that we didn’t have to drive back on Sunday.

Brynn went back to her pre-K school class on Tuesday and was greeted by all of her friends, including a running hug from her bestie. After school she asked to go to karate and take a class. She came off of the dojo beaming. So I’d say she’s adjusting to being home well.

We sadly learned that the promising immunotherapy clinical trial for her diagnosis was closed to new participants the same day that Brynn completed treatment. This trial would have relocated us to GA for at least 4 weeks and then monthly for as long as she qualified to stay on it. We were initially sad to have missed it by moments; however, seeing Brynn get back into some normalcy makes it worth it.

The principle investigator was hopeful that we’d be able to still get the trial drug outside of the trial in a few months. This would be approximately end of March/April. We’d be responsible for the cost of all investigational drugs and procedures out of pocket due to being off-trial, and you can only imagine what that cost may be. That is where this GoFundMe money and other fundraising efforts will be going to - extensive travel expenses, missed work, clinical trial treatment-related expenses (whether this trial or others that she qualifies for), and necessary interventions that will keep Brynn alive long enough for there to be a breakthrough. We know she cannot be cured with how her disease progressed, but we have to believe that some brilliant mind out there is working on her miracle.

We can’t thank you enough for the support - physically, emotionally, financially and spiritually. We love you #BrynnsArmy and couldn’t be in this fight without you!
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$20,045 of $20,000 goal

Raised by 298 people in 8 months
Created November 1, 2018
Melissa Lonergan
on behalf of Jessica Lonergan Tobin
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