Beyond the Tumor Update: Emily Hood

We first met Emily Hood a few months ago when we learned all about this passionate young lady.  Emily was diagnosed with DIPG in February of 2019.  She has tried a variety of treatments and most recently participated in the CAR T Cell trial at Seattle Children’s Hospital. I got the chance to follow up with Emily this past week. Emily has since stopped the CAR T cell trial treatment.  This was a personal choice due to her symptoms worsening.  She does not want her experience to discourage other DIPG warriors from joining this trial.  Emily believes that although this treatment was not right for her, the doctors are working hard to find the best dosage for each patient.  Her tumor remained stable during the CAR T Cell trial and she has also participated in another session of radiation.  Now, Emily is taking new chemo drugs, Avastin through infusion and Farydak by pill.  She is noticing her symptoms improving! She may consider another clinical trial in the future, but expressed some frustration that many clinical trials do not take patients who have had multiple treatments.

Although Emily says she has felt a bit weird since leaving the trial, she is excited about the future.  She is able to stay with her favorite oncologist at Seattle Children’s and loves giving him funny gifts.  Most recently, Emily gave her doctor a customized bobblehead that looked exactly like him! She is excited to have received the first dose of the Pfizer COVID-19 vaccine. Emily is hoping to start some classes at her local community college soon because she is a bit ‘stir crazy’.  She hopes these classes will help her prepare for a future college education and career as a pastor.  Emily looks forward to taking a history course because that is one of her favorite subjects. 

In the meantime, Emily is busy watching her favorite shows including the new Marvel series, The Falcon and the Winter Soldier.  She is a number one Marvel fan and even notices details about how you can spot good and bad characters! Emily also loves hanging out with her cats and laughing at them while they try to attack birds through the window.  She enjoys watching cat videos on Tik Tok and irony or satire comedy videos.  When I asked Emily about what has been giving her hope recently, she said “I just really like life”.  This girl has a passion for living and a huge heart.  She also said that her sister gives her a lot of hope.  She is in beauty school and Emily expressed that she is very proud of her. Emily’s sister loves to do her nails, but is still earning her trust before she cuts her hair! I loved catching up with Emily and am happy to hear all about her life adventures.  We cannot wait to see where else her strong spirit takes her!

By Grace Ison

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