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Saving Suzie

$29,147 of $50,000 goal

Raised by 395 people in 9 months
Created October 25, 2017
Suzie:
Suzie is the embodiment of love; she is warm, patient, generous, and kind-hearted. If you've met her, you know her adventurous spirit, eternal glass-half-full-ness, and tremendous capacity for caring for others.
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The Video Message of Love and Support:
SEE the video made for Suzie, sending her love and support from her friends and family...


The Story:
Suzie is a nurse, and is currently working on obtaining her masters in nursing. She is the kind of nurse that every patient deserves beside them- compassionate, intelligent, inquisitive, and determined.


Suzie is also recently married, just having celebrated her one-year anniversary to my brother, this past July. Their love for each other is the kind that can move mountains. Seeing Suzie with her husband is the kind of thing that makes you believe in miracles, and true love, and soul mates. It is the kind of love that grows old and wrinkly, but never loses its glow.
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Suzie is also in need of your help. She would never ask you for it, which is why I am the one writing this.
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Suzie was recently diagnosed with a very serious and life threatening cancer (High-Grade Adenoid Cystic Carcinoma) affecting her skull base and spine.  
Suzie's skull base tumor is shown in this MRI image, circled in red.  Since it is touching her brain stem, a special form of radiation is required to treat it.

Although she is in great spirits, she has a long and difficult journey ahead of her.

Suzie receiving Proton Radiotherapy at Massachusetts General Hospital; this is the special radiation treatment that will give her the best possible outcome.

Suzie recovering from her endonasal biposy surgery

This GoFundMe is not only for the already-mounting medical expenses, but also for the the other expenses associated with her care. Because of the location of the tumor, she has had to leave her home in Boulder, Colorado, and travel to Pittsburgh for surgery. Her and her husband will have to live in Pittsburgh for several weeks, or months, to continue to be monitored. This means extraordinary housing expenses and other costs of living.
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On behalf of Suzie and Jesse, I am so thankful for your support and for being there for Suzie during this time. If you are unable to donate, please share this with your friends and let them know how incredible she is. 

Help shoulder this burden so that Suzie can focus on healing.  That way she can get back to being the incredible smiling, laughing, singing, and dancing sister, daughter, wife, nurse, and friend that she is.

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Update from Jesse:

Family and friends,

I am happy to share that Suzie finished her 43rd and final radiation treatment, with curative intent, the first week of February. She handled the treatment's side effects 'remarkably well,' in the words of her radiation oncologist, and remained in good spirits until the last session.

During treatment, Suzie would often fantasize about being at the beach during treatment, and after she was finished, she wanted to swim in the warmest water possible.

Therefore, the same day she finished treatment, we boarded a plane to Miami and embarked on a cruise vacation in the Caribbean! A few days in the sun and sand were 'just what the doctor ordered,' and Suzie enjoyed the island destinations almost as much as the free unlimited ice cream cones on board.

We are now back in Colorado, rested from our vacation, and eager to return to life as normal.

On the treatment front, we are still pursuing a couple avenues. Your donations have, in part, funded Genomic Testing of her tumor by Foundation Medicine Inc.

We have contracted Foundation Medicine to perform an array of tests to identify which immunotherapy clinical trials will be the most effective, in the case that there is a local or distant treatment failure requiring systemic treatment. Immunotherapy clinical trials for AdCC are in their infancy (due to the rarity of AdCC), but there are are a few with solid scientific rationale that will be available if needed.

Of course, what we hope for the most is that the radiation successfully nuked these tumors from orbit - and we never hear from them again. That would be the best possible outcome. But we won't know this for some time, and will get used to frequent scans to check on her progress.

Here is one last update on how the funds are being used:

Housing in Pittsburgh: $4000
Housing in Boston: $8000
Food and Essentials: $3500
Medical Bills (2017): $4500
Medical Bills (2018): $4500
Foundation One Testing: $3000
Travel and Logistics: $1000
Total: $28,500

As always, thank you all for your continued support and for keeping us in your thoughts. We will keep you updated as there are new developments.

Warm regards,

Jesse Summers

Enjoying the Caribbean post-treatment!
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Message from Jesse:

Dear friends and family,

Thank you all once more for the outpouring of love and support. We have made significant progress in our journey thus far, thanks in no small part to your support. Suzie is fighting her illness fiercely though daily radiation treatments as we settle in to this "new normal."

As you may or may not know, Suzie is fighting a rare form of cancer called Adenoid Cystic Carcinoma (AdCC). Roughly one in 20 million people are diagnosed with this form of cancer. Her form of AdCC, poorly differentiated AdCC, is even rarer. There have been about a dozen cases ever documented in medical literature. As such, we are doing absolutely everything we can to set her up with the best available medical care.

Suzie's primary tumor initially formed on her upper salivary gland, but rather than growing into the nose, as is the most common pattern for these tumors, it grew backwards onto her skull base. Due to this unusual growth pattern, it is now abutting her brain stem and carotid artery - a difficult medical situation. Her situation is complicated by the fact that there is a secondary tumor that was discovered during her PET scan on her cervical spine.

How we are fighting it:
Due to the rarity and severity of her condition, we will be re-locating as necessary each step of the way to the centers most experienced in combating this unique cancer. This has taken us from the neurosurgical team at the University of Pittsburgh to the radiation oncology team at Massachusetts General, and may bring us to Houston (MD Anderson) or New York (Sloan Kettering) in the near future. We are seeking treatments on the cutting edge of medicine, as there are no "definitive" treatment modalities for Stage IV AdCC.

I will describe our immediate next steps below, so that you may follow her treatment:

Radiation Therapy-
Suzie's first line of treatment is a combination of Proton and Photon radiotherapy, which is being delivered to both her primary and secondary tumor. She will be treated with 11 total fractions of Intensity Modulated Radiation Therapy (IMRT): 10 fractions for the skull base and 1 for the cervical spine. She is currently done with 9 out of 11 IMRT treatments. Today, she will switch to Proton Radiotherapy. The advantage of Proton Radiotherapy, for her specific case, is that it can be delivered incredibly precisely. High doses of radiation can be delivered just millimeters away from critical structures, such as the brain stem and carotid artery. This will give our team the greatest chance of killing the tumor while preserving her neurological functionality.

We will also need to address any systemic tumor cells, which is complicated by the fact that AdCC does not typically respond to chemotherapy. There is a chance, due to the aggressiveness of her specific tumor, that a better-than-average response to chemotherapy may occur. However, we need to also evaluate several novel second line treatments as well. Tomorrow we are meeting with the head and neck oncology team at Dana Farber in Boston to determine our next steps.

Most likely, our most immediate next step will be conducting genomic testing of her tumor. We will send a sample of her tumor tissue to Foundation One, an organization that offers genomic testing of tissue to determine whether or not the tissue tests positive for any of the 300 most common mutations found in solid tumors. Although adenoid cystic is an uncommon form of cancer, her tumor may share a genetic marker with another form of cancer that is commonly treated with a specific form of chemotherapy. Alternatively, this test may reveal if her genomic markers identify her as a candidate for an immunotherapy, or a cancer medicine that enables your immune system to effectively detect and destroy malignant cells. This test will not confirm whether these treatments will work, but they will guide us as to the best treatment path going forward.

After her radiation therapy is finished, we will heed the advice of her oncology team for the next steps. Possibilities include immunotherapy, chemotherpy, or watchful waiting. However, in the best possible scenario, we will be able to begin the next phase of treatment from home in Colorado.

Thank you for reading this, and thank you once more for your continued support. We are pushing the boundaries of modern medicine with her care to give Suzie every possible chance at the best possible outcome. We are incredibly grateful for the outpouring of financial help we are receiving through this GoFundMe page. At this point we have had the resources to travel as needed to give her the best possible medical care, and we are incredibly grateful for that.

So far, we've been able to avoid the following costs thanks to you:

-Medical Expenses ($4,000)
-Housing ($7,500)
-Food ($1,500)
-Logistics ($1,000)
-Genomic Testing ($5,800)

As we approach the holiday season, although this is the most difficult year we've ever experienced, we are still very grateful to each of you. Please keep Suzie in your thoughts during the holiday season as we fight this.

Kind regards,

Jesse Summers
jesselsummers@gmail.com

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Update from Jesse:

Thank you all for your continued support. Suzie remains in good spirits despite her symptoms as we step up our fight.

As you may recall, we re-located from Colorado to Pittsburgh for skull base surgery at UPMC. However the plan changed when the diagnosis and staging became clear. We now know specifically what Suzie is fighting, a rare cancer called high grade adenoid cystic carcinoma.

Due to these development, her medical team decided that rather than surgery, Proton therapy, specifically with the skull-base experts at Massachusetts General, will give her the best possible outcome.

With your help, we have re-located to Boston for Proton Radiotherapy at Massachusetts General and have secured an apartment convenient to the hospital for the next month as her treatment begins.

Once again, thank you all for your continued support as we do everything we can to fight. Please continue to send Suzie notes of encouragement, she reads and appreciates them all.

Warm regards,

Jesse
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Update: Suzie's surgery, with the goal of maximum total surgical resection, will be performed this Friday. We are thankful for the skill and expertise of her neurosurgical team, who are arguably the best in the world at resecting malignant tumors in this location. Please keep her in your thoughts during this major surgery and her initial recovery

Please feel free to keep sending her encouraging messages of support leading up to Friday, as she is grateful for every positive message she receives.

Thank you all, once more, for your donations and support- we are very grateful for your help during this time.

- Jesse & Suzie
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$29,147 of $50,000 goal

Raised by 395 people in 9 months
Created October 25, 2017
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