09/11/2026
🎗️💜🎗️💜🎗️💜🎗️💜🎗️💜🎗️💜🎗️💜🎗️
Yesterday we had our first nurse visit with hospice. Ollie also had a really good day which got us through this tough appointment. She was very talkative, silly, and also voiced frustrations about her cancer. We try really hard to allow her to be part of the decision making and conversations. I am so proud of her!
Hearing hospice really sets off this tug of war in my mind. The word HOSPICE is often associated with “the end”, “no more time left”, and “dying”. While all those things can be true, right now Ollie seems to be doing okay. This service will add extra support to her and our family as well as provide counseling services for us and our kids should we need it. Her new team seems to mesh well with us and we are so grateful!
For the last almost 7 years of fighting this awful disease, I feel like we’ve been stuck in survival mode leaving very little time to slow down and process the most life changing events that have occurred. We’ve been pulled between being with Ollie and advocating for her to get the best treatments and giving her the best quality of life, to spending quality time with our other kids while fulfilling their needs, working, keeping each other sane, keeping a strong marriage, and navigating every day life during not so normal circumstances.
We were told in the beginning that most parents stop working because of the many appointments, side effects of treatments, and duration of treatment . We’ve been lucky enough to have Jason become a stay at home parent shortly after diagnosis. I’ve had jobs that have been mostly understanding and flexible. I battle with being her primary caregiver but also being the source of our family income. I want to be present for all the things but there is only one of me. Jason and I are a pretty good team when it comes to the divide and conquer portion but it takes its toll for sure. Ollie was diagnosed at the start of COVID and with restrictions and the number of kids we have, it’s been a lot of navigating this journey together but also on our own and alone.
Today has been a particularly hard day. Every now and then these days happen when my body is tired and I’m forced to think about what we’ve been through. I mask anxiety and depression very well and usually spend my time caring for others or making others laugh or smile. Yesterday triggered the fact that here I am discussing our daughter’s DNR, Hospice, quality of life goals, and how we need to go ahead and have a plan in place for if/when she needs a funeral home, and who to call if she passes at home. Those are extremely hard to hear out loud and even harder to discuss. 9 year old’s should be discussing their toy wishlist, favorite shows, playing, and having fun. They shouldn’t be discussing chemo, medications, ports, tube feeds, and g tubes, or how she sees her medical team more than she sees her friends or attends school. We thoroughly understand the necessity of these conversations but after all ,it is our child. She’s an innocent life that has been pushed past the limits any human life should ever bear. Also, did I mention she is a CHILD!
On a positive note, Ollie had labs today. Her counts are on the rise! Her recent scans show much improvement to many lesions. She does still have quite a bit of cancer to her hips/pelvis, and right leg. Her bone marrow biopsy wasn’t a great sample and couldn’t really rule out low disease in the marrow but I still see this as a victory and we will take it!
Next admission is 9/28 and we are discussing chemo and immunotherapy or just immunotherapy. Our goal is the least amount of time in hospital but also keeping the disease burden at bay. We want Ollie to have fun and do kid things!
🎗️It’s childhood cancer awareness month🎗️Wear a yellow ribbon, donate blood, talk about cancer, raise funds for research, donate to cancer foundations that support families in their journey, and do it all for kids like my Ollie. 🎗️💜🎗️💜
