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Evie Hooper- Olfactory Neuroblastoma

$26,160 of $25,000 goal

Raised by 323 people in 1 month
Created December 29, 2018
Fundraising Team
on behalf of Veronica Hooper
Evelyn (Evie) Hooper was first diagnosed with cancer at three weeks of age. Bilateral Retinoblastoma caused tumors to grow in both of her eyes. She lost her right eye to cancer before she could begin treatment in Toronto.  After four rounds of chemo, laser and cryotherapy treatment, and many EUAs (examinations under anesthesia), Evelyn was considered a survivor by the time she was 7.

In August of 2018, Evie noted that her sinuses were bothering her and that her nose wouldn’t stop running. While waiting for the cold or sinus infection to clear up, Evie’s left eye began to swell, and her lymph node in her neck was bothering her as well. After treating her with saline, steroid sprays, and antibiotics and seeing no improvements, Veronica (mom) took her in to the Alberta Children’s Hospital  on November 9 th , where she had a CT scan. The doctors referred her immediately to have an MRI, and a follow up with an ENT as there was something visible in her sinus. The results of the MRI were gutting. Evie had a large mass growing in her sinus, and the doctors had her admitted immediately to perform a biopsy on the mass. The results came back positive, and showed that the tumor had metastasized to the lymph nodes in her neck. After many tense days of waiting, they were finally able to give her tumor a name: Olfactory Neuroblastoma.

Olfactory Neuroblastoma is a rare cancer that is primarily in adults; in other words, they do not see it in children. In adults, the survival rate when the cancer spreads to the lymph nodes is 20%. The Hooper family’s world was turned upside down. Treatment began immediately for Evie after celebrating her 11 th birthday on November 24 th.  Adults with Olfactory Neuroblastoma are not treated with chemotherapy as it does not tend to shrink this very aggressive tumor. Typically, it is treated with surgery and radiation.  As of right now the surgery that needs to be performed would be very invasive due to the size of her tumor, the plan is to use chemotherapy and hope for the best prior to surgery and radiation. With Evie’s history of the genetic form of Retinoblastoma, radiation puts her at a high risk for secondary cancers.

Before Christmas, Evie began chemo, which has yielded some positive results. She still has another 2-3 rounds of chemo to go before they will perform surgery to attempt to remove the mass from her sinus. In all likelihood, they will also remove the large lymph node that was visibly affected by the cancer, but they will not remove the other lymph nodes from her neck. The third course of treatment involves radiation therapy to try to neutralize any cancer cells that are still in her sinus and throughout her lymph nodes. To help improve her chance of survival, the team at the Children’s Hospital are sending her to receive proton radiation therapy, a more precise and less invasive form of radiation that is less likely to trigger secondary cancers post treatment.

Proton radiation therapy is not available in Canada, so Evie and her family will be travelling from Airdrie, Alberta to Jacksonville, Florida as soon as she has recovered from her surgery. Evie’s treatment will be 30 minutes a day, 5 days a week for a minimum of 28 treatments, plus time required to perform scans and tests prior to beginning radiation. The minimum length of time that they will be required to stay in Florida is 2 months, with a strong possibility of needing additional treatments and time spent away. The family hopes to be able to stay together throughout the length of treatment to make the most of the time they are given to be with each other.

The family will require financial support to be able to stay together. Evie has three siblings: Gwen (12), Sully (6), and Celeste (3). Mike and Veronica will be taking time away from work to keep the family together, and the financial burden will be great.

Things they will need to cover in addition to regular monthly expenses include:
- travel expenses for the siblings and Mike
- lodging in Florida
- the cost of food and living at the US exchange rate
- any other incidental costs that arise while treating a critically ill child away from home

The family is very thankful for any and all support they receive, financially or otherwise. Evie is a bright light that deserves all the love she can get while going through a battle that she has already been through.
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Greetings Friends,

Evie finished her second round of chemo like a true warrior and had her end of round MRI on Monday. Today we found out that she will be doing a third round of chemo starting on the 21st. This isn’t what we wanted to hear, but it’s not a bad thing as the doctors are still confident that she is responding well and it will make a difference in her surgery. It bumps her radiation date back as well, I figure if all goes to plan and we don’t have to do any more chemo that we will be going to Jacksonville in May and June, but we should know more soon.

A giant THANK YOU to everyone who has donated to the campaign- we hit our goal and beyond. I cannot express the difference it has made along this journey, being able to focus on Evie’s treatment right here right now without having to figure out how to stay together during her next steps is an incredible gift for us all.

Stay warm everyone!

Love,
The Hoopers
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Hello Everyone,
I am sharing this for those of you who haven’t seen this update on Facebook yet.

Love,
The Hooper Family
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Hey Everyone,
Thank you for your continued support.

Just a quick update on the next few weeks, Evie has her first consultation with the surgeon on Monday. We are feeling all kinds of things about this, there are a lot of questions we have that will hopefully get some answers.

Her next course of chemo starts on January 31st over 5 days. Then she will have another MRI to see how the tumour has progressed. Depending on what the docs think, she may have another 6 weeks of chemo. The hope being that we can see enough shrinkage in the tumour that the surgery can be as uninvasive as possible.

Our trip to Jacksonville for treatment is completely dependent on her surgery date, so we will keep you all posted as soon as we hear anything.

Love to you all,
Veronica
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Now for the news that’s everyone’s been waiting for... Evie got a new hat!

Seriously though, the MRI results after the first round of chemo were amazing. The tumour is responding well to chemo and we are feeling very hopeful as we start round 2 today! The docs are discussing a third round of chemo so long as everything keeps shrinking, and we’re totally on board with that so that the surgery will be as uncomplicated as possible. Radiation is dependent on her surgery date, so no news on when we will be heading to Jacksonville just yet.

We know that all of the prayers, thoughts, and love is being heard. Even if things were to change tomorrow, our girl is living a miracle. Our family is living a miracle. Life IS the miracle.
Blessings.
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$26,160 of $25,000 goal

Raised by 323 people in 1 month
Created December 29, 2018
Fundraising Team
on behalf of Veronica Hooper
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