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Avery's Little Army
Research Partner

Born: June 11th 2012
Diagnosed: December 19th, 2021

A “Life Changing” Discovery 

In late December 2021, after a long day of skiing, Avery and I were relaxing in the Mount Snow ski club.  As she was sipping a hot chocolate, I vividly recall her saying to me, “Mom, that was one of the best ski days ever,” with a lazier than usual smile.  I remember being relieved she had not experienced any headaches that day, as they had been persistent, on and off, for weeks.  

Little did I realize what was to come over the next several hours.  Once we made our way back to the condo, Avery’s headache came on with a vengeance.  My husband, Paul, and I tried everything to relieve her pain.  By 2am it became clear it was not going away.  We drove through a horrific snowstorm hoping to get to Yale New Haven hospital, but her pain and the weather were so extreme we only made it to the one- room Emergency Department in Brattleboro Memorial in Vermont; with her sister and dog in tow.   

“I am so sorry, it is a ‘mass’ in a really tough spot, I am so, so, incredibly sorry.”  Those were the words of the doctor in the ED in Brattleboro following her CT scan.  

After being rushed to Yale New Haven Hospital, Avery had an additional scan which even more clearly showed the tumor in her brain.  While in Yale ED in the middle of the night, my husband and I went into a small dimly lit room and sat across the table from a young looking resident with dark hair and glasses to review the results.  I do not remember the details of the conversation but do remember his words when we naively asked if there was a potential fix to this.  “No”, he said, “I think this is going to be life-changing.”  Little did we realize how right he was. 

Thrust into a Battle with an Impossible Diagnosis

We opted to biopsy the tissue which was her first brain surgery which was performed by Dr. Michael DiLuna, Chief of Pediatric Neurosurgery in Yale New-Haven.  In January of 2022, Avery underwent a beautiful resection surgery at New York Presbyterian Hospital with Dr. Mark Souweidane, Director of Pediatric Neurological Surgery, Weill Cornell Medicine, NYC.  Following these two surgeries, she was treated with great care and excruciatingly detailed planning by Dr. Ranjit Bindra, Therapeutic Radiology, Pathology, Pediatric Radiotherapy out of Yale New Haven.  Avery completed 33 sessions of her Standard of Care (SOC) Radiation by early 2022.  

During the course of the above whirlwind of treatments, we were enjoying ourselves in Dave and Busters on a Sunday afternoon when Paul’s phone rang and he stepped outside to take the call.  He was on the phone for quite some time with a Dr. Cassie Kline, an attending physician and Director of clinical research in the department of Neuro-Oncology at Children’s Hospital of Philadelphia (CHOP).  When he came back to the table to relay the conversation, I could feel her level of urgency through his description of the call.  She was working to get the genomic information ASAP and spoke to us about next steps and trials Avery may be eligible for following her RT.  It is her urgency and drive at the individual patient level (and no doubt extending into her research)… which make Dr. Kline exceptional.

Avery enrolled in clinical trial PNOC022 in May of 2022 at CHOP.  This was a combination trial consisting of two drugs, Paxalisib and ONC201.  For approximately the next year, Avery continued to live quite a normal life doing all of the things she loved – attending school, playing competitive soccer, skiing moguls, taking trips, and spending time with family and friends.  We made it to Florida a couple of times, took a variety of ski trips, and even met the US Women’s National soccer team through the Make-A-Wish foundation.  A special thank you to everyone who made all of this happen.  

Unfortunately in early 2023, we started to see signs of slight tumor growth in the MRI imaging.  We were devastated; hoping we would have seen benefit for a longer period.  As the months passed, it became clear the effectiveness of the drugs was waning as the tumor continued to change, and in July of 2023 Avery underwent another series of photon RT at Yale New-Haven.  She remained on PNOC022 under the recurrent arm of the trial and continued to have a high quality of life. However, it was becoming clear the disease was taking its toll.  

In early 2024, we saw spread and growth yet again.  Avery underwent a 3rd round of (palliative) RT.  She is currently on another PNOC trial, 021, to try to target some of the genetic mutations of her tumor.  

While we have made some beautiful memories as a family the last couple of years, we are heartbroken at what this diagnosis entails for us, and many others facing a similar battle.  

Perhaps we were like every family who goes into this with cautious optimism and hope.  Hope your child is “the one;” Hope that sleepless nights of reading complicated research articles uncover something your medical team has not thought of.  However, the grim reality is, while progress is being made, we are quite far from a cure.  

Bragging Rights…

Paul and I are not the type to boast about our children.  However we think Avery has earned the right to be talked about.   Our biggest fear is people do not remember Avery for who she truly is so I’ll close this by describing a little of her here.  

Most importantly, Avery is compassionate and caring.  In fourth grade she donated every penny she had (~$75.00) to an autism class fundraiser and then begged Dad to add in some more. She will spend HOURS researching gift ideas for family and friends for various holidays and birthdays with no worry about her own.  (Although she does like a good party!).  She lights up when they are opened and knows she made the recipient happy (particularly her sister, whom she adores).

Avery is bright and perceptive.  I remember going into one of her school parent teacher conferences and it starting with, “Avery is just so <insert curse word> smart.”  More importantly, is her desire to help her peers and create a team environment in the classroom; one where no one is left behind.  We’ve heard this from her teachers time and time again, in every conference we have ever had.  She’s won “Respect Stars” and “Superintendent Leadership Awards,” to name a couple, for which we are beyond proud.

Avery is funny.  She loves to poke fun at all of us in the family, with quick wit and sarcasm.  While less outgoing than her sister… as her sister is in the midst of telling a story about school in an excruciating level of detail, Avery can be heard interrupting with things like, “Lexi, so tell us exactly how many stairs did you have to climb up to get to class today?”  

Avery is athletic.  While sports became harder and harder for her since her diagnosis, she has a natural athletic ability, particularly for soccer.  

Avery is so many things and I could certainly write more.  Unfortunately the reality is, the course of her treatments and the overall progression of her disease have taken much of this away from her.

Plea for Help and Why we Fight

Closing on a more positive note, Avery is still here with us today and maintaining a pretty good quality of life.  Her side effects to the medications are few which we are grateful for.  We have good days and moments where we see “the old Avery” emerge, and we live for these moments.  

The research funded by organizations like ChadTough are getting us closer to a cure for these awful brain tumors; and that same research will prove to be beneficial for many other cancers as well.  

Our family continues to ask for help because we feel Avery has directly benefited from the research and trials funded in part by ChadTough.  However, as we are experiencing first hand, there is much more work to be done; for Avery, and for others facing this disease now and into the future.

With Much Love and a Little Hope,

Paul, Lisa, Alexis, and Avery Lafferty

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.