Overall, Emily has been doing really well. Sometimes I’m afraid to keep saying that – it’s part of the reason I don’t update as often anymore. I sit down to write updates all the time but I never finish them because I feel like if I keep posting updates on how well she’s doing that I’m jinxing her in some way. I don’t know if that makes sense. But we’re coming up on her 1 year visit and things have been going so well that I’m afraid at some point it’s all just going to end again. Now I feel like just talking about jinxing her will jinx it. It never ends!
She has been fighting a cold off and on since THON (middle of February). Over the weekend her cough seemed worse and she was coughing all night long, which meant no sleep for anyone (even Lucy our dog would growl and sigh when Emily would start coughing!), so Monday we took her to see Dr. Powell. She was supposed to see him Wednesday anyway for her March visit and we were going to try to wait, but Emily was coughing so much we felt she needed to be seen early. Her chest x-ray looked fine and blood work looked good so she is taking an antibiotic for a few days. Her cough is a little better today.
Her blood work last month and this month is….normal! Last month was the first we’ve seen normal blood work in a long time so of course….I started to worry. WHY is the blood work normal? Does that mean the T-cells went away? Is her white count rising because of blasts (cancer cells)? Nope. It was just plain old normal blood work :-)Emily’s next doctor visit will be at CHOP for her ONE YEAR follow-up appointment on April 15th. It will be an exciting day because she finally gets her port out!! I’m not going to get ahead of myself because it’s still a few weeks away but we will have a lot to celebrate around that time: port removal, 1 year in remission, 8th birthday, AND her first communion happens to fall on the same weekend as her birthday! We’re hoping to combine everything into one party, which of course will include a visit to Party City for decorations
Emily and T-cells were in a few news stories the past few weeks including GMA with Robin Roberts and The New York Times again. Results of the first two pediatric patients in the CTL019 trial (formerly the CART-19 trial) were published in The New England Journal of Medicine (Emily is “Patient 1”). CHOP released this statement about the results. You can also read more about the story here and here.
We have a lot of things coming up that we are very excited about and should be a lot of fun! We will share soon!