On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Monday, April 23, 2012

Standing, walking, dancing

Phoebe took six beautiful steps all by herself yesterday. At nearly 20 months old and completely on her own terms, she is learning to walk. Unlike her big sister, who when she learned to walk would excitedly walk towards my hands when asked, Phoebe will stand on her own with a big smile on her face, but when I hold out my hands and ask her to walk to me she says, or usually shouts, "no, no" and shakes her head. She chooses, instead, to take her steps when no one is watching and then laughs and claps her hands when we take notice. She is also becoming quite the dancer and will stand up and bounce to music. It is a beautiful sight.

She is doing so well and I am so proud of her. She is drinking milk with every meal and is very slowly gaining weight. Today at the hospital, her blood work looked great. Still wonderfully normal, or as close to normal as we have ever seen. There was even talk of sending us home. Home sweet home. The levels of all of her drugs are within normal range, or close to normal and they are re-checking them on Thursday. Then I am hoping we will talk about travel, airports and future plans.

When we do make it home, Phoebe will still be monitored very closely - about once a week at Sick Kids for blood work and levels of immuno suppression as it is important that everything remain where it should be, within normal range. We will also return to Memphis for more follow up monthly. We will be busy, but I envision it to be a happy busy. Phoebe will continue to be isolated from most things when she returns home - she won't be able to go to the grocery store or the public park, hand sanitizer will travel with us everywhere, she will need to avoid crowds, playgroups, libraries, and all of the "normal" things that most stay at home parents do will be on hold until she is farther out from her transplant. Her immune system is fragile and even a cold could be dangerous. She won't receive any immunizations until a year post transplant either so her immune system will be similar to a new born baby, or a new born on immune suppression. And it is becoming more and more difficult to convince her to wear the mask that is supposed to protect her if she finds herself in a crowded spot (like the airport), but she will be home and all of this aside, I think that just exploring her house, a place where she has only spent 2 months, and her backyard, will be paradise. And one day Phoebe will shop, explore, and do all that she wants to do and I can't wait.

1 comment:

  1. great great news! You deserve it soooo much!
    take care, Sophie