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.

Thursday, March 1, 2012

This too shall pass ...

Phoebe continues to have 100% donor cells and she is most definitely kicking this Leukemia's butt. She is still eating, pulling herself up, standing, babbling and saying new words. Her favourite thing right now is to give hugs and kisses to Jon, Mae and I. It really is a beautiful thing and it warms my heart.

The rash, however, is still here. And although it is not any worse, it is not better either. The cream does not appear to be doing its job. Tomorrow, Phoebe will have a skin biopsy to help to determine if this is GVHD. The doctors are going ahead and treating it as such before the biopsy results are available because they are convinced it is and they want to keep it under control. GVHD is essentially the new stem cells attacking Phoebe's body. It can be life threatening and is something that I have seen many children suffer from. Phoebe's liver enzymes continue to be elevated, and this is another area that can be affected. We really don't want it to get any worse and so although the prospect of Phoebe being on more medications that carry with them many side effects scares and worries me, I think the alternative is far worse.

Treatment for GVHD is steroids, and the doctors plan to use as small an amount of these as possible. The steroids will hopefully burn out the GVHD and then Phoebe will also be on immuno-suppression. She will be on this medication for 4-6 months, if all goes well and its job is to prevent any more complicatons. It is, as much of this is, a fine balance. Weighing side effects with treatment, and ensuring that the delicate balance of immuno-suppression is there. Just enough to prevent GVHD but not too much as to affect these new and hard working cells.

There is one good thing about GVHD and that is that statistically, patients who have it have a decreased risk of relapse. I will add this piece of information to my list of all things good and positive about all of this, and think of it when the alternative and worrisome thoughts work their way into my mind.

As for the future and a possible homecoming, it will definitely be delayed. For how long, we are not sure and we
are taking things as they come. Phoebe will not be sent home with active GVHD, so that and all other things transplant related will have to be stable. How long all that will take will depend on Phoebe and how her little body responds to treatment. And really, as long as we are bringing home a healthy and Cancer free Phoebe Rose, it doesn't matter.

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