Sixteen years ago today in a little apartment in Bedford, TX, I surrendered my life to Jesus. Looking back, I see a beautiful tapestry of God’s faithfulness, a life set right, a heart changed, a girl given a future and a hope.
Even today, as we sit at Phoebe’s bedside and watch her heart rate dip, I find it difficult to feel anything but gratitude. We have been so blessed with this girl, and oddly enough, by how cancer has changed us. Phoebe has set the tone with her joy despite circumstance, and who am I to rain on her parade?
So we watch her sleep, we smell her, memorize her, soak her up. We tell stories, laugh, remember, and then we cry.
She wakes up for 20 or 30 minutes at a time to blow bubbles, boss her brothers around or paint fingernails and then she goes to sleep again. We might get to take her home again, we might not. We know that now. The goal is to watch, and wait and see. This stomach virus has taken a lot out of her and there is the question of whether or not her body can rally back from it.
On July 26th we received the news that Phoebe’s cancer had returned. She was given 2 to 8 weeks to live. We recently passed the 8 week mark and we realize that each moment is an extra blessing.
We are not accepting visitors at this time, but thank you for continuing to stand with us, and thank you for the outpouring of love and support you all so graciously give. We love reading the comments on Phoebe’s site and seeing how many people are praying for our daughter.
She had a rough night, heart rate too low in the 60″s, low K, receiving blood transfusion now. Infection still wracking her little body. Keep praying..
Phoebe is feeling much better today! We still need to see her eat/drink without vomiting and we need a diagnosis for her tummy issues. She is being hydrated by IV because she can’t seem to retain anything in her stomach or bowel. But, there is a marked improvement from yesterday after all of the broad spectrum antibiotics she received. Thank you for your prayers and thoughts for our family.
With the blessing of hospice, we took Phoebe to the ER in the middle of the night last night. Her health has been declining rapidly recently and she hasn’t eaten in days. Last night she was profusely vomiting, had explosive diarrhea, fever, heart rate was elevated and her O2 sats were in the 70’s.
Because of the profuse vomiting, even the smallest amount of meds or fluids come right back up. She is has been admitted, receiving meds and fluids through IV and is on isolation. She will be there for the foreseeable future. We will try and give a more detailed update in the morning.
As always, “we walk by faith, not by sight!”
“God loves us and God is not a meanie” –Phoebe Fair
My little “bright, illuminated light” grows dim. It is almost imperceptible and then suddenly I realize that she is different. She doesn’t eat anymore, a bite of ice cream and then it melts in the bowl, or she carries a popsicle around until she decides against eating it. Suddenly- no need to stock her beloved pistachios- “stachios”, her tortilla chips or Cheerios. And she stares..off into a faraway place at times and I can’t call her back with my voice. Only my touch brings her back to me. Could be small seizures says Jan, our hospice nurse, but maybe not. She has a more difficult time completing sentences and loses her train of thought. And today:
Phoebe: “Mommy, know who slept with me last night?”
Me: “Yes, Grammy slept with you last night.”
Phoebe: “No, Jesus slept with me last night.”
Me: “Jesus slept with you?”
Phoebe: “Yes, God.”
She makes comments like this more and more and I wonder how thin the veil is becoming.
You know, when a light flickers just before it goes out? This is that. She has these moments of breakthrough clarity and tells me amazing things. And then she grows dim again. She speaks less, shuffles. She fell yesterday. And somehow I can get up and brush my teeth. Sufficient grace. Calm before the storm. I try to brace myself for what’s coming, ready myself for impact.
I have scrubbed this house from floor to ceiling, and there are 5 new bulging trash bags worth of stuff at Goodwill. I am nesting in reverse. Planning for the days I can’t get out of bed and face the world, when the sun is too bright and the birdsong outside my window doesn’t match the ache I feel inside. I am not unaware that those days wait for me. I have been there before, but this will far surpass those depths.
Jesus is in the depths. I know He is. I will find Him there, partake in His sufferings. There will be new insight. Hard earned.
I find myself needing to protect the time we have with her. The time for sharing is ending and the time for staying close is here. My mother love will orbit her, do what more I can do for her. I imagine it will be like in those first days, in our bedroom in Mexico, when the night breeze blew the leaves of the Jacaranda tree on our patio and in through our window where I nursed at 2 am and 4 am. By moonlight I stroked her head and marveled that at last I had a daughter.
In my mind I imagine a peaceful transition. I know it often isn’t so. Please pray for peace for Phoebe. God is already so obviously present with her and that comforts me to no end.
Some days are better than others for Phoebes…she is pretty emotional right now and that can be difficult for everyone. The car seems to soothe her and help her sleep so we have been doing a lot of driving. Nathan drove around town for 5 hours the other day so she could sleep well. She seems to feel more comfortable sleeping at an incline, likely from the pressure in her head. She won’t eat much else besides popsicles and sometimes ice-cream although she’ll ask for 5 different things trying to find something to make her feel better.
Today she grabbed her little noggin and took off at a full run trying to escape the pain. I remember her doing this before she was diagnosed with the first tumor and it is disheartening to see again. I am hopeful that we will see improvement as the radiation does it’s job reducing the tumor size.
For now, she needs relief, the boys need grace for her mood swings and we just need prayer. Thank you for surrounding us with your love and support.