No evidence of disease from monitoring scans! We did the normal leg MRI and blood work, but got to replace the chest CT with a normal chest x-ray to monitor recurrence per Dr. Thompson.

We met with Dr. Rosenthal in May. He was very excited for the 2 years cancer free marker approaching (he counts from surgery date on June 8th not end of chemo on October 28th 🙂). It’s not the 5 and 10 year marker, but still a significant milestone in the cancer world. 

Unfortunately the same level of excitement turned to an equal level of surprise that the full nerve function never came back to control Lily’s foot. He wanted to wait 2 years, so now he has referred us to an ankle/foot doctor for evaluation if Lily is a candidate for a tendon transfer surgery. Lily was understandably upset at all of this. 

She doesn’t want to meet for the consultation until the end of the summer as to not even think or worry about if they can or cannot do anything for her. This way if a surgery is even possible she can avoid having it cut into her summer. Plus she’s quite the thinker and realizes if she has the surgery later she will get to miss school. Middle school kids have not been the kindest, so we fully supported her thinking. 

Things are far from storybook perfect, but Lily is alive and there is no evidence of disease. We remember that and are so thankful everyday. We are painfully aware many kids every single day succumb to this awful disease. Sometimes it is difficult for a child to have that perspective, but I am so proud of Lily and how she handles and copes with life.

Next monitoring scans are November 1. We also are also due for an echocardiogram at that visit (every 2 years) to monitor heart damage due to one of the chemo drugs - doxorubicin (“red devil”) - Lily had to take 10 doses of. 

Thank you for the continued prayers and kindness.