More Hair Falling Out (Feb. 9th, 2012)


Most of Phoebe's hair came out while I brushed it.

11:10 am:

Yesterday evening while Phoebe was asleep, I got the comb and started brushing her hair. The room was peaceful and the lights dim, the star machine that projects the galaxy on the ceiling splayed a thousand green stars across the darkened room. It came out easily, her hair, in soft clumps that pulled away as I gently combed. She didn’t even wake up. I turned her head and continued on until a huge nest of hair sat beside me on the sheets. All that was left was a thin layer of soft strands. Nathan came up to the hospital to take pictures and I cut the rest short so that it would not get tangled in her face tape and ng tube as it has been for most of the day. I think the rest will fall out today or tomorrow.

She looks like a chemo patient now and that was difficult. But I didn’t cry. She was sitting up playing with toys and enjoying Daddy blowing bubbles while I cut her hair and I didn’t want her to see me sad.

She had a rough beginning to her night last night, with almost 3 hours of pretty intense pain from her open sores on her bottom. Dr. Bowers said those should heal right up as soon as her immune system kicks back in. I pray so, poor baby is more bothered by her bottom than anything else right now. It took a while for the morphine to trump the pain, but they finally got it under control and she is now on a constant Morphine  drip. We still have the pump as well so when she seems to be really struggling with pain we can push the button to give her an extra dose.

Deacon is still sick and it looks like the other boys are coming down with it as well which means they can’t come to the hospital. This week when Nathan and I trade posts at the hospital, I have to call him when I pull up to the front of the hospital, he has a nurse stay in the room with Phoebe and he meets me at the van to take the boys and I go up to her room. They won’t let you past the front desk with a cough or runny nose which is great, but it has taken some creative logistics on our part.

Nathan’s parents come today for four days and that will be a big help. We have had a lot of help and feel really taken care of. The only thing that no one can help with is the intensity of life at the hospital right now. As soon as I walk into her hospital room after sleeping the night at home, I feel the stress descend upon me like a cloak. I am fixed upon screens with all her numbers; heart rate, oxygen levels. I am consumed with sodium levels and always waiting for the next report, thinking maybe I can prevent disaster.

We are really hanging our hats on seeing an improvement in her overall well being this weekend. She needs a break from hurting. Please pray for the neutrophil levels to leap back up and for her sores to heal. We are encouraged that today she continues to snack and drink by mouth, that is a good sign!

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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