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.
Tuesday, June 7, 2011
Phoebe has been making wonderful progress. Today she met with an occupational therapist who, among other things, will help Phoebe make the slow transition from IV nutrition and feeding tube feeds to oral feeding. The transplant and all of the chemotherapy that Phoebe has received has understandably had a huge effect on her eating. She has had fewer opportunities to try new foods and there have been times when her body has been too tired or in too much pain to even try and eat, let alone digest food. Being able to eat "normally" has been pretty low on the priority list but now that we are at the end of Phoebe's very intensive chemotherapy and treatment, we can focus on eating and trying to make her life as normal as possible.
In the past, feeling so desparate to get Phoebe to eat something before her next round of chemotherapy, I would dance around the room with her and the bottle trying so hard to get her to drink from it. Today after my talk with the occupational therapist I realized the importance in giving Phoebe a chance to actually enjoy eating. We talked about letting Phoebe have control, and allowing her to navigate her own way back to eating, all the while developing and learning to have a good relationship with food. One day Phoebe will eat and because of all that she has been through I would like the process to be as enjoyable as possible.
So we are starting slowly. Today Phoebe very happily sat in her high chair and played with cheerios and crackers. It was during her second time in the chair that she picked up a rice cracker and started munching. She seemed overjoyed to be reunited with her beloved rice crackers and very happy with the crunching sound she made as she bit down. She also held her own bottle and although she didn't drink from it, she was not horrified by it like she was last week when I presented it to her. We have made some definite progress and tomorrow is a new day with new opportunities and more chances to move forward.
On the home front, preparations are still being made to send us home. We are being taught how to take Phoebe's blood pressure, manage her many medications, and give injections. The plan seems to be to send us home soon after Phoebe has completed her antibiotics as long as everything is under control, but we want to make sure that Phoebe is ready and healthy enough to go home. She has yet to make her own platelets and red blood cells so we are very cautious and really don't want to take any chances with her health. When we eventually get back home, apart from out patient visits to the hospital, we would like it to be for good. So we are taking things one day at a time and not packing our bags just yet ...