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, December 26, 2011

Home for the holidays

Phoebe is "home".  She was discharged on the 22nd and has been with us since.  We have also been back to the hospital every day since then too, to have her blood checked, levels of very important anti-rejection medications taken - to prevent Phoebe's body from rejecting the cells, and to have the doctors look her over and make sure that everything is okay.  So far, apart from extreme fatigue, weight loss, nausea and diarrea, everything seems fine.  Fine, just like the word "well", is a relative term.  All things considered, including the fact that Phoebe's little body has just been through extreme trauma, she is doing fine.  We have seen many smiles over the past few days, but Phoebe is still not herself.  She is slowly coming out of her shell, and getting stronger, spending more and more time awake during the day, and while she is awake she has played with her new toys from Santa.  She is not unhappy, but she is not herself.

It was wonderful to have all of us in the same place on Christmas eve and Christmas day, to not have to juggle children back and forth, wondering who would get to see Mae prepare Santa's cookies and milk - which she did expertly and even included a picture, or who would get to see the joyful reaction to Santa's arrival.  Jon and I were both able to do it all this year, and for that we are so grateful.  Christmas was full and complete and the generosity of family, friends and the folks at St. Jude and the Target House was incredible and overwhelming, in the best way possible. 

Although it is wonderful to be together, and it is where Phoebe is happiest, for one of the first times since all of this began, I think that she looks sick.  She is thin and tired looking, she has dark circles under her eyes, her skin is dry, with little elasticity or muscular definition.  She is no longer the perfectly plump baby with the big chubby cheeks.  Her hemoglobin is closer to normal than it has ever been, but it is not reflective in her complexion or energy.  She has been through more in one year than most of us will experience in a lifetime.  More pain, more hurt, more confusion and heartache and I am anxious for it to be over.  I am anxious to have my Phoebe back.  Mae too, appears to be anxious for the return of Phoebe.  She had commented to many people since she arrived home, that "Phoebe is still sick". Yesterday was the first day since Phoebe has been home that she didn't cry when Mae approached her.  It is heartbreaking.  I long for the day when they can play together without worry of tripping over feeding and IV tubing, when Phoebe isn't so fragile.  I know it will come.  Although Phoebe appears to be sick, I know that inside her little body, amazing things are happening.  She has now been without a blood or platelet transfusion for almost a week, her electrolytes are stable and within normal range, and her white blood cell count is holding steady.  She is exhausted because she is working hard and healing.

We can now think about the future and not be treated like we are crazy and unrealistic for doing so.  6 months ago, we were told by many doctors that Phoebe had zero chances of survival.  Zero.  Today, there is a wonderful and very real chance that she will survive.  We believe she will, and many doctors do too.  It is amazing.  My hope is that in making it to this point, Phoebe has not only changed our lives, but also changed the lives of other children who may find themselves in a similar and unfortunate situation.  There is now a little person of reference.  A person to prove what we have always known - that anything is possible. 

All set for a Christmas day walk.   

No comments:

Post a Comment