PLEASE SEE INFO FOR LINK - Arlo's Fund (2019)

Due to changes with GFM, we had to create a new fundraiser . Please use and share this link: http://gf.me/u/y7p86b

*Update 11-6-20 from Ericka*

As most of you know, Arlo had his third craniotomy in October. There was discussion of residual disease versus a relapse. Unfortunately we will never know the answer, but here’s what we know-

1) The mass was surrounded by a hard casing, possibly from his immune system. Within the casing, the cells were angry and rapidly dividing and trying to spread.

2) A new test has been created since Arlo’s original diagnosis. We were originally told he had Grade III Ependymoma RELA fusion positive. Now we know he has something similar to RELA mutation, but it’s just now starting to be recognized as it’s own category (C11orf95 fusion-positive). Because it’s similar, it doesn’t change prognosis, but it’s still not preferable to other categories/mutations.


3) This time everyone is confident that the resection was clean (even more so than the first time- there was always a bit of question due to his skewed anatomy during his first surgeries)

4) The best outcome for Ependymoma is a gross total resection followed by radiation. He was too young for radiation last time. That’s why we did chemo. We knew chemo wouldn’t kill any cells or stop a recurrence, the goal was to give us as much time as possible before it came back.

Epenedymoma is known for its frequent recurrences even 10+ years later. Arlo’s oncologist is vigilant with statistics, medical journals, studies, and asking the people she trusts their opinions and experiences. She decided to bring Arlo’s case to a National tumor board last night where everyone overwhelmingly said we should not put off radiation any longer. Without doing this proton radiation it’s not wondering if the cancer will come back, it’s when.

Due to his age, he needs proton therapy which is only available at big centers. Currently we are waiting to hear what our insurance covers and who will accept him, but our first choice is Boston. Proton therapy is roughly 7 weeks long, 5 days per week. Since he is only 2, he will need anesthesia. Every. Day. Arlo and I will spend roughly 4 hours per day in the hospital because of this (the proton therapy itself only takes 10 minutes each session). We are required to stay close to the hospital throughout the treatment, but we are hoping to come home a weekend for the holidays. I am so happy to be able to not be working and be with Arlo all the time, but that puts an astounding amount of pressure on Sean to maintain working even through all of this. Not to mention me being pregnant and the holidays quickly approaching.

*Update 11-6-20 from Danielle*

The costs of cancer is overwhelming. The cost of travel, lodging, food, etc is overwhelming. The cost of giving up one spouse's income is overwelming.

It is estimated that Sean and Ericka will spend $5000 just on a place to stay during Arlo's treatment. Their medical expenses out of pocket will be maxed in January since Arlo will actively be in treatment. They will also be paying all their household bills while their home sits empty over Thanksgiving and Christmas. Ericka and Sean are also expecting their second child, so all of this is happening while my sister is pregnant, which absolutely adds another layer of stress to the impossible situation they are in. If you are able to help them get through this immensely challenging time, we are so grateful. Thank you for reading, sharing, and donating <3

*Original Post*

It breaks my heart to be creating a Go Fund Me for Arlo. Monday, August 12, Arlo went to the ER for a believed ear infection, and it was discovered that he had a large mass in his brain. After an MRI, it was decided that surgery would be required to drain the fluid and remove the tumor. Unfortuntely, the tumor could not be removed entirely, and will Arlo require chemotherapy, possibly out of state, to continue treatment.

Expenses are beginning to mount for Ericka and Sean, as they are at the hospital (and out of work) around the clock to be there with Arlo. Ericka will likely not be returning to work for an extended period of time, which adds financial worries to the already monumental stress of Arlo's health.

If you'd like to help ease the burden for Ericka and Sean, you can donate here. Money will be used for medical bills, household expenses, as well as the costs associated with being at the hospital (food, parking, gas, etc).

Arlo, Sean and Ericka all have a long road ahead of them, so any little but helps and is appreciated


Thank you for all the positivity and prayers these last few days.