I think this is the longest span of time I have gone without posting. The most obvious reason is that Phoebe is home and life is moving along, but school is happening alongside a lot of fun summer activities, and my sister in law and her husband and children have been visiting from Liberia, Africa where they serve as missionaries. This was their first time to meet Phoebe and our first time to meet their second daughter, Myriam. It was so nice to see them after three long years and the boys had a wonderful time with their cousins.
Phoebe has been doing well for the most part. We did have to make 3 unexpected trips to the hospital this past week; her ng tube got pulled out on two separate ocasions and then we had an ER visit the other night because she had a qustionable mental status upon waking from her nap. At the time, we knew her hemoglobin could be low and that she was also likely experiencing some drug withdrawals from her Methadone wean. It’s always deflating to decide to go to the ER late at night and know that we will be there for several hours just to have her labs checked, but with the possibility of a dangerously low hemoglobin level, we couldn’t risk it. I don’t know how we would do this if we didn’t live 15 mins down the road from the hospital.
Now that Phoebe is home more often and life has settled down a little (a very little), I think the reality of this whole thing has taken root in me. I feel a pervading sadness underneath the surface most always. I know some things now that I didn’t really have time to process before. For instance, I now understand that come what may, if we are a year out, or two or more from Phoebe’s chemo treatment, we will live our lives with future MRI’s and their possible life-altering results forever. I know now that secondary Leukemia is a possibility down the road. I am aware that Phoebe’s fellow AT/RT friends are slipping into eternity…some of these, the very first families to reach out to us when Phoebe was diagnosed. These things weigh heavy in the quiet spaces of my life. I prefer distraction.
I also have realized the ways that Phoebe has changed. Her cognitive abilities are wonderful, her intellect intact. I could not have hoped for a better outcome from her brain surgery. But…she no longer has the attention span for books. She will not allow me to read to her or thumb through the pages of a book just looking at pictures by herself as she used to do. She has no attention span even for her favorite shows…she can not focus long enough to watch or follow a story line. The steroids that she must take for the rest of her life render her impatient, demanding and prone to mood swings. I miss who she was before, even as I love her now. These are the little losses strung out over this cancer road. These are the subtle ways our lives change a little every day. The medicine that kills her cancer, kills her attention span and healthy cells.
When Phoebe was first diagnosed, we looked into the Burzynski clinic that several people had mentioned to us. There is a popular documentary out right now about this controversial man and his cancer treatment that utilizes antineoplastins. We were warned to stay away by our neurosurgeon. He said it was the only piece of treatment advice he would give us. But, we researched, even called the Burzynski clinic for information. When they heard Phoebe was 2 and had AT/RT, it became apparent that they were not convinced they could help. Upon further research, I dicovered that they have a 0% success rate in treating AT/RT cancer. So, that was the end of that. Next to Gliomas, AT/RT is the big, bad, nasty childhood cancer. Thus we chose the Dana Farber chemotherapy protocol which has a 50% success rate in treating AT/RT cancer.
We made the only choice there was to make. But waiting for chemo to work or cancer to kill is a feeling akin to being trapped in a small, dark space. I wish I could expalin it better. Life is on hold. That’s what I mean. And “doing” cancer is maddening. The not knowing is of course the hardest part. Who will I be when this is all over? Well it depends on how it ends, I think to myself. But no, I’m forever changed either way. We all are; Nathan, myself, the boys…Phoebe. How will God shape this thing for our good, for us, who are called according to His purposes? All this growing thick skin is for the birds and I’m tired.
And that’s what I feel right now. I feel quiet. And never quite at ease. And unwaveringly grateful for the cherubic little girl asleep in her canopy bed right now…breathing and dreaming.
Tonight I am remembering these lines from Rilke’s Book of Hours, Love Poems to God….
God speaks to each of us as he makes us, then walks with us silently out of the night.
These are the words we dimly hear:
You, sent out beyond your recall, go to the limits of your longing. Embody me.
Flare up like flame and make big shadows I can move in.
Let everything happen to you: beauty and terror. Just keep going. No feeling is final. Don’t let yourself lose me.
Nearby is the country they call life. You will know by its seriousness.
Give me your hand.
~Rainer Maria Rilke