Fighting for Ella

What do you think of when you hear the word cancer?

Honestly, when I think of the word cancer, it feels like an elusive thing that people get, but you never really think it’s going to be you or someone you love, like your child.

In December 2021, that all changed when my 14 year old daughter Ella had two swollen lymph nodes: one in her armpit and one in her neck. We took her in for a routine check, thinking she was just sick with COVID. Within two days of her first appointment, the doctor suspected that she might have Hodgkins Lymphoma. Coincidentally, the doctor treating her just so happened to specialize in this exact cancer and had worked at Saint Jude’s Children’s Hospital previously and that is how we were able to catch it so quickly.

Initially, I thought it wasn’t that big of a deal. I thought her odds were amazing and that we were going to kick its ass, but it’s a lot more terrifying than I ever thought it would be.

Overall, treatment for Hodgkin Lymphoma is highly effective and most people with the condition are eventually cured.

But the treatment and the whole experience is terrifying. I was definitely devastated because no one wants to ever hear that their child is sick, let alone that they have cancer.

After all the testing finally confirmed she had cancer, we started her chemotherapy journey. She responded very well, and we thought it was gone after six months on chemo. Unfortunately, after further testing to ensure it’s remission, it turns out she is the 1-in-4 who are not cured by the treatments she had undergone.

Being able to work or focus on work has been nearly impossible, because I am constantly stressed and worried about her, and now I often leave work early because she doesn’t feel good and I rush to pick her up from school. I also have a family of 6, which includes Ella's twin sister, Avery (14), my younger daughter Kaydance (11), as well as my stepson Kodiak (12), with my husband Ty, so it’s a struggle for the whole family. Ty works full-time as a paramedic/firefighter and owns his own landscaping business, and I own a small business.

I have been so blessed to have such great insurance and have been mostly able to stay here in town for all her treatments thus far. But as things have progressed, we are now having a lot more tests, many more doctor appointments, and many more out-of-town visits up to Oregon Health and Science University (OHSU) in Portland, Oregon which is about 4.5 hours away from our home. This is where she meets with a team of doctors to look after her that can range from a specialist RN, hematologist, clinical oncologist, social worker, transplant specialist, and a psychologist/counsellor. One of her treatments coming up will entail a month's stay at OHSU Doernbecher Children's Hospital to be monitored after her very intense chemotherapy, to have a T-cell transplant, and possibly a blood transfusion. That’s a month with no income and as a small business owner, I don’t get PTO or sick leave.

Recently, on the very first occasion that I didn’t go to one of her appointments and my husband had to take her, she had a terrible allergic reaction where her whole body turned red and she felt like she couldn’t breathe and needed immediate medical attention. We may need to have to carry an epipen on us at all times moving forward. As a mother not being there for my daughter when she needs me the most was one of the worst moments of my life. I feel like I cannot afford to miss work, but I cannot afford to not be with my daughter either.

This is not the first bad reaction, and the side effects are numerous. Treatment could potentially cause her to be infertile, and we might have to save her eggs. She is so exhausted most mornings that she doesn’t have to go to school until later in the morning, and it’s starting to make her a little depressed that she doesn’t always get to be around her friends. Remember, in the middle of this is a 14 year old girl, in middle school, who loves concerts, shopping, cooking, walking around town with her friemds and annoying her mother with her sassy attitude (it’s ok now, I forgive her). She has lost all her hair and has to wear wigs to which have caused an unexpected challenge in her social life. Although she is starting to love the whole wearing wigs aspect and has every color of wigs you could think of. Other issues are her immune system is compromised and we can’t risk her getting sick because if she gets a fever, we have to immediately go to the hospital. The doctor said, expect unexpected visits to the ER.

I can’t help but cry every night wondering why my daughter and not me? But Ella also doesn’t allow me to be sad, because she doesn’t want me to baby her. So I have to keep a smile on my face every single day and wait until I go home, and shut my bedroom door to feel. And that’s really hard on those long drives home from Portland.

Her initial chemo treatments were every other week, and while her chemo treatments now are every 21 days, we are still at the hospital once a week to do blood draws. She has had three surgeries to date, plus two more coming up in a week, four CAT scans, three PET scans, and at-home shots to boost her white blood cell count.

The first surgery was to take the lymph node out to test it and biopsy it, the second surgery was to put her port in, the third surgery was to do a needle biopsy. The next two surgeries are to put a central line in and then take it out the next day.

Her upcoming doctors appointment consists of her and I sitting in the hospital for 5 to 7 hours while they collect cells for her future transplant. She will also have to have radiation when all of this is said and done up in Seattle, WA.

Previously, I wasn’t missing too much work, but now, within the last two weeks, I have maybe only worked a total of five days. And I’m going to be missing a ton more.

All of that is to say, I am struggling to work while taking care of her and supporting her through all of this. So any donations made will be going towards travel costs, any extra medical expenses that may not be covered by insurance, and the replacement of lost wages due to my inability to work during this time. I thank each and every one you for any support during this most uncertain, intense, challenging, stressful, and terrifying time in our life. I promise I will pay it forward.