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, March 12, 2012

Day + 103

There is nothing quite like a baby on steroids. Nothing. And a very headstrong toddler on steroids is even worse. W are on day 7 of steroids to treat Phoebe's GVHD of the skin and she has spent each of these days eating, laughing, playing hard, drinking, gaining weight, and screaming like I have never heard a baby scream before. We are no strangers to fussy babies, but the past few days and nights have been difficult. This morning, the only thing that would console Phoebe at 3 am was her high chair. Her high chair tray full of her favourite BBQ chicken, cheese, and mandarin oranges. It is sad because all of this behaviour is related to the steroids, she has no control over how she feels or acts and she can't communicate any of this to us. There is screaming, throwing food, and then, when it is all over, a lot of kisses, hugs and giggles.

Thankfully, we have started to wean the steroids. We are hoping to see an end to these intense mood swings and insatiable hunger by early next week. Phoebe's rash is not as angry as it was and on parts of her body it is very faint. The plan is to continue to wean the steroids as long as the rash doesn't flare up and then keep going with the immuno-suppression for another few months. But it all depends on Phoebe and how her body and ths GVHD responds to treatment.

Phoebe's visit to the hospital went well today. Her counts are all steady and stable and her critically high liver enzymes are on their way down. From 1200 and 1800 on thursday to 300 and 900 today. They are still high, and the 900 is still critical, but they are moving in the right direction. The doctors think that the cause is a virus and not GVHD and have cancelled plans for a liver biopsy. They are not certain which virus has caused this and so far all tests have come back negative, but as long as we move out of the critical zone, that is okay right now.

And so now, we take things as they come, putting one foot in front of the other and slowly moving in the direction of home. Boxes are being packed, toys sorted, and plans made to send one member of this family on the road to home. The rest of us will hopefully follow soon enough, once Phoebe is ready and all of her complicaions and issues have been put to rest. What a wonderful and sweet reunion that will be when it happens. Feels good to make plans and to get back to some kind of normal, or at least try to.

Happy day + 103 ... Phoebe Rose has passed another major milestone on her road to recovery.

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