The last two days we have spent a lot of time at the hospital. Things turn on a dime with Phoebe and just a matter of hours after my last post we were on our way to the oncology clinic for a high fever. All of her numbers looked good except that her hemoglobin was low, so after two rounds of “just-in-case” antibiotics, we settled in at the “infusion room” for a 4 hour long blood transfusion. It’s times like these that I realize how fortunate we are that Phoebe is pretty laid back. Sitting still in a chair for four hours would be tough on any 2 year old, but in many ways it feels like God has specially equipped her with just the right temperament to handle this storm.
I on the other hand, seem to be grieving the loss of my healthy little girl again recently. It is wonderful to have her home and yet it reminds me how much our lives have changed. I suppose they ebb and flow, the hard feelings that come with cancer. I reorganized her closet and her chest of drawers the other day. There was the little purple shirt with flowers that she wore to the ER that first night. That tiny shirt would no longer contain her rounded frame were I to put it on her. Steroids and lack of excersize have given her a whole new shape. In my mind’s eye I can still see her walking down the hall in the ER in that little shirt and her khaki pants. I gave them to Goodwill. I might regret it, but when I see those clothes they just remind me how much she has changed, how much she has lost already. The little pink tennis shoes with sparkles she wore that night still have dirt stuck on the soles. That dirt reminds me that she used to walk and I leave it there. Now when I stand her up she cries out in pain, her feet have started to point downward and they often hurt. And I hurt… 12 weeks in to 52 weeks of chemotherapy…
And then I read a friends’ blog who has just recently lost her 2 year old daughter to Leukemia and my perspective shifts. She’s still here…with us. I saw her belly- laugh today and she called Nathan in from the other room so she could pray for him. She piped up out of the blue “Mom, I love you SO much!” and my heart did a little flip. And that is more than some families have tonight. But man, cancer is a beating. I need buckets of grace and super-powers just to do the everyday things. We live tired..it’s a constant state. And sometimes I wonder, “how can we do this for 14 months?”…one day…one moment at a time, and riding on the prayers of those who have the heart to pray for us. So when I say ‘thank you for praying for us’, I mean it in a genuine way. The highs are high and the lows are low and I never knew that I could be so grateful and yet so sad all at once. Phoebe is a trooper, I think it’s her Mom that is a little frayed around the edges right now, lol.
We are watching her for fever closely and if she has another one we will be admitted back to the hospital. They are really going all out to try and keep us home for as long as possible, but three high fevers in three days would be too much. Please pray that Phoebe’s body would regulate her temps correctly (if these are central fevers) and that we would be able to stay healthy and at home a little longer.