Phoebe was diagnosed with ALL in August 2018, one week before her second birthday. A couple of days before Phoebe’s diagnosis she was fussy and not herself at all. Then the next day, she woke up with a low fever and her symptoms just started progressing rapidly. She went from looking a little off when walking to a limp, to refusing to walk by mid-afternoon. I took her to urgent care that evening and they found petechiae and sent us to the emergency department at our local hospital. After more tests, they transferred us to the Children’s Hospital of Philadelphia in the middle of the night, where she was admitted to oncology. In hindsight, Phoebe had been taking longer naps and had some odd bruising, but nothing that could have ever made us realize what she was going through. It felt as if Phoebe went from a happy- joyful toddler to fighting for her life overnight.
We have had to be extra careful to avoid germ exposure, which has meant that Phoebe has missed out on many of the experiences kids her age enjoy – for instance, at times she has stayed home from nursery school and she has not been able to do things like taking ballet lessons with her friends. We have had to avoid crowds, say no to events and vacations, and holiday celebrations because of possible germ exposures.
Phoebe’s health has been a source of stress and anxiety for all of us, but Talya, Phoebe’s older sister, has been most impacted as she has not always been able to participate in the activities she would like to do to protect Phoebe from germs. Now, with COVID-19 and Phoebe still having a weak immune system, her sister was not able to attend camp and could have to stay home from school to protect her sister. Our family life has had to put Phoebe’s health and safety ahead of all other needs and concerns. We do the best we can to support one another, but it has been challenging.
The worst is behind us, but the path forward will require lots of monitoring for Phoebe, therapies, and tests to see if the treatment left lasting damage to her physically or will create learning and memory problems as she approaches school age, and healing for our family.
Hope session by Jenni Fritz Photography | Facebook | Instagram