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.

Friday, April 6, 2012

Sweet, wonderful chaos.

Yesterday was a busy day. It started at 7:30am with Phoebe's eye doctor and ended at 4pm with a visit to the medicine room - the room at St.Jude where all of the chemo, blood products, and other medicines the children need are given. Phoebe was there to get a drug that will help to protect her from the respiratory virus.

In between these two visits, we saw the neurologist whom Phoebe loves. When he sees her, he always picks her up and she giggles and snuggles her head against his chest. It warms my heart and makes me happy to see Phoebe being held and comfortable with someone other than myself or Jon. What also makes me happy is knowing that Phoebe no longer needs to be followed by neurology. We can see her friend the neurologist on social visits only. More happy news yesterday was delivered by the eye doctor, who told me that Phoebe's eyes are stable. They are still slightly elevated but to a degree that can be considered normal. And even more happy news from the transplant team who said that Phoebe's latest chimerism is still 100% donor cells and all of her blood work, apart from her slowly recovering liver enzymes, looks great. Normal.

Other than hospital life, we are making things work as a family of three right now and missing our number four. Phoebe is doing so very well, getting stronger and learning new things everyday. Yesterday she stood up all by herself in the middle of the room, she spends a lot of her time standing while holding on to something and bouncing, and at times she seems to "talk" constantly. I often understand very little of what she says, but she is making sounds and that is a very good thing. Mae is loving these new skills as it opens up a world of play for her with her sister, who up until four months ago, spent much of her days in a crib. Our days can be very busy, however, but I often find myself loving the chaos. Appreciating the fact that my family is complete and together. I have learned that each moment is precious, whether it be a moment spent in complete agony and stress with two kids in a tiny doctor's office, trying to talk seriously over the noise of Caillou or Dora (we had a few of those moments yesterday), or a sweet bedtime moment of stories and songs. Time, how ever it is spent, should not be taken for granted.

Throughout this journey we have met many families who have lost children to cancer and this week a friend said good bye to her sweet and fabulous two year old, Piper. Piper battled infant leukemia for most of her life and touched many lives with her strength and resilience. My heart breaks for each of these families and I wish and ache for a breakthrough, more research, more attention paid to the cancers that are killing children. We have seen first hand how research is evolving and helping to save children, or to give children like Phoebe a second chance and I believe that a cure will be found, hopefully in my lifetime, but I am all too aware of the need for more funding. I see it everyday in the faces of children and their families.

1 comment:

  1. thanks for the good news!
    take care, Sophie M.M.