Help Ava Decker Fight Cancer

Dear friends and family,

Our sweet friends, the Decker family, who have always been the first to step in and help friends in need and have been involved in many local community non-profits, are now in need of our help as they find themselves in an unimaginable circumstance.

In late October of last year, Ava (then eleven years old and now twelve) was experiencing some mild discomfort in her left femur. Concerned, her parents took her to the pediatrician in November, who assured them it was merely “growing pains.” The discomfort, while still mild, continued to increase and Vanessa took Ava back to the pediatrician in December and asked for an x-ray. Fortunately (and sadly) Vanessa just had a gut feeling this was more than normal growing pains. A week before Christmas, Vanessa and Shawn were told that Ava had an unusual mass on her left distal femur that was likely osteosarcoma, and they were immediately referred to an orthopedic oncologist at UCLA. Ava had an MRI and biopsy and it was confirmed that her diagnosis was osteosarcoma (bone cancer).

Since last December, Vanessa and Shawn have been doing everything they can to help Ava fight this uphill battle. She sees a pediatric osteosarcoma specialist at UCLA in Santa Monica, so all her treatments are in Los Angeles, including ER visits of which there have unfortunately been many. On January 19, Ava started intense back-to-back chemotherapy regimens to try to shrink the tumor before surgery. This intense chemo lasted three months, and during this time, the family secured a one bedroom housing in Los Angeles so that Ava would have a place to recover during the time after chemo when she felt too sick to travel. This housing gives Shawn and James a place to stay near the hospital while Ava is emitted for days to a week at a time for treatment and keeps the family close to Ava’s medical team when that is what is needed. When Ava is in the hospital, Shawn and James are frequent visitors while Vanessa stays with Ava the entire time.

Ava like most kids was afraid of needles, surgeries, and hospitals. As told by her dad, he used to take her bandaids off by slowly rubbing moisturizer into one end until it painlessly slid off. Later Ava would allow her bandaids to fall off naturally with them just hanging on by a small corner for days. Vanessa and Shawn describe those initial chemos and hospital stays where Ava had to overcome fears, endure intense pain and discomfort, and prepare to do it again. Her first chemo she lost over 10 pounds from her 70 pound body due to nausea and not being able to keep anything down. She also had a severe reaction to a drug that was meant to help with the side effects, which caused hallucinations and panic. The MAP chemo regimen was very hard on her body and unfortunately, her cancer pain continued to gradually increase.

Following three months of chemo, Ava had major surgery to remove the tumor as well as part of her femur bone, which was replaced with a metal rod that will have to be extended as Ava grows. She also had a total knee replacement. The surgery came right when it was needed most. The week before the surgery, Ava’s cancer pain had reached an unbearable level and she was on narcotics around the clock. She was either sleeping or screaming in pain for the last couple of days before surgery. After surgery, the cancer pain was gone but replaced with the pain of recovery from a major surgery. At one stage her leg was stuck in a bent position, and she was once again admitted to the ER to manipulate it straight. But Ava returned to another round of chemo while healing from this major surgery, all in hopes of putting this behind her.

A recent routine CT scan, however, showed that the MAP chemo wasn’t working, and the cancer had spread to Ava’s lungs. A subsequent PET scan showed that the cancer had also spread to other bones. At that point, her doctors decided to stop the MAP chemo and switch to a new treatment (ICE chemo) which, thankfully, appears to be slowing the progression of the cancer. They are concurrently working with Ava’s medical team on a variety of alternative treatments.

As you can no doubt imagine, the cost of this journey has been insurmountable, and it will now be even longer than they had initially anticipated due to the metastases. Although the family is always grateful for prayers, they are now asking for financial support as well, to help cover not only the surgery and future surgery expenses and medical expenses but also the upgrade to their insurance, their time off from work, housing in Los Angeles for when Ava is too sick to travel back home to Santa Barbara, childcare for James, physical therapy, mental health therapy, Ava’s wheelchair and ADA home modifications. The family may travel to other areas to have access to clinical trials not offered locally.

Vanessa and Shawn are so grateful for the check-ins and support and hope that you will understand that they are too overwhelmed to always respond to messages. It is uncomfortable for them to ask for help, but we all know they would be the first to help any of us if we found ourselves similarly situated.

All donations will go directly to the Decker family.

Thank you,

Friends and Family of Ava Decker

UPDATE

We have been overwhelmed with the deepest gratitude for how much support we've received from all of you. It has made a huge difference for our family. Just a massive thank you to everyone.

As a brief update, Ava has done a lot of radiation at UCLA and it has provided some pain relief. Typically, her pain increases during and immediately after the treatment but then improves. She was also taking a chemotherapy pill, which was great as she could take it from home. Trips to LA were still necessary but she was able to be in Santa Barbara more, which she loves as her friends are here. I know she wishes she could see everyone more, but she gets very tired and it's difficult for her to move around, which keeps her in bed a lot of the time.

I do have some great news! She was approved for compassionate use of a new treatment option, which is also a pill. The side effects so far are minimal and while her cancer pain and neuropathy continue, they seem to have decreased. She goes to UCLA every other week, but it appears most of her time will still be in Santa Barbara.

We are grateful for and present to each day. We are so incredibly fortunate that we get to be the parents to our amazing children. Ava has been on this journey for about one year and three months. She has endured more trauma than most people do in their entire lives. We have experienced moments of the greatest joy and the lowest lows, trying to control what we can and plan for what we cannot (such as when her intense pain hits). Something all of you have helped in such a big way with is to relieve the financial burden and the heavy load of stress that it carries. This is very uncomfortable for me/us to ask for support, I couldn't bring myself to open this app for months after putting out the request over Facebook. I have been reading about the importance of receiving support and how to do it. As our journey continues, we need to increase the amount of our fundraiser as the medical expenses, time off from work, housing in Los Angeles, childcare for James, physical therapy, mental health therapy, and loss of income from Ava needing to be in a part of the house that was previously rented continue. Thank you again for your support.

With gratitude,

Shawn