For November, we went back to Washington and Seattle Children’s Hospital. We would like everyone to meet Savayah “Savvy” Lewis who is fighting her battle against medulloblastoma. We haven’t planned this with everyone so far, but Savvy also recently had a birthday. She is now three. Savvy has also finished her chemotherapy treatment this month and her scans remain clear.

When we first decided to do this we thought it wouldn’t be too difficult as we had been through a similar path with a lot of these families. We wanted to do something for all these children. We definitely wanted to tell the world all these stories that go unheard. It has been three months, and we have been overwhelmed by the many families who had struggled to get a diagnosis. It seems that cancer is the last thought. As we share these stories, we hope they bring more awareness so that maybe another family doesn’t have to go through this. Without further delay, here is Savvy’s story as told by her mother, Amy.

The worst of my life started when we took Savayah to the urgent care because she threw up 2 days in a row in the morning only. The urgent care told us to head to the ER because they were worried about it being something serious and they didn’t have the equipment to do a CT scan. We arrived at the ER and waited hours to get seen. Once we finally went back to a room, the Dr hardly checked her out and said she’s fine. She was acting and behaving totally normal and he said it was excessive to give her a scan & he wouldn’t do that to his 2 year old. So we left. The next day I made an appt with any doctor at her regular Dr’s office. This doctor seen us that day and said it was constipation. I was very upset and knew it wasn’t that. So we left and waited and prayed for her to get better. The next morning she woke up throwing up in her sleep and couldn’t even walk or keep her head up the entire morning. So we took her to Seattle Children’s Hospital. We waited so many hours there and finally got into a room where they repeatedly kept telling me it's probably a virus. I told them no way and that I wanted a scan and blood work. They agreed. An hour passed and they came in and told me the most devastating news ever. Savayah had a tumor in her posterior blocking the spinal fluid from releasing and needed surgery right then to relieve the hydrocephalus it caused. Ever since that day, we didn’t leave the hospital more than 2 weeks total. After EVD surgery, shunt surgery, tumor resection surgery, and hickman line placement surgery, we started chemotherapy. We are currently on cycle 4 of 6 and it has been the most emotional roller-coaster. Finding out she had the worst (group 3) of the 4 subgroups of medulloblastoma was where I thought for sure I wouldn’t have my baby girl with us much longer. Also, for some reason, losing her hair was extremely sad to me because it made it that much more real. Then seeing the first bag of chemo come into the room made me so sick to my stomach. I just wanted to take her and run away. But I knew I had to stay to save her life. She has been losing her eyelashes recently and cannot walk because of where the tumor was located. It is so scary seeing her not be able to walk but we will focus on PT once the chemotherapy is complete. I am so thankful to have her alive and here with us. We had to completely rely on the doctors to give our baby girl the best treatment plan. Worrying nonstop if this will rid her of the cancer is so stressful and there was absolutely no time to think on it. She needed it all asap.

This happening to her has made it so hard to be a family. I had to completely leave my older kids and our house so that I could be by Savayah’s side. The hospital won’t allow siblings so they can’t even see their sister. I would say that has been our biggest hurdle. It’s been hard on my older kids seeing their little tiny sister go through this and can’t help her or see her. There’s literally nothing that can make another person understand how this feels unless they’ve been through it and seen first hand how bad it really is. All I know is that I am guilty of not knowing how childhood cancer was before all this started and I wish there was more that could be done to help these innocent kids and better treatments. I can’t say there has been many positive times but there are many times that we are thankful for such as going home, even if it is a short time, the doctors removing all of her tumor, getting over viruses and infections that scared us so bad and just having Savayah alive with us is the best blessing ever. I am still hoping and praying everyday that Savayah makes it through this and lives a long happy life.

Savvy has a Caring Bridge page set up if you would like to follow along in her journey, https://www.caringbridge.org/visit/savayahlewis as well as a GoFundMe.