Chemo-eve (Jan. 26th, 2012)


4:54 pm:

Phoebe didn’t sleep much last night, her tummy troubles were in high gear and she had 3 doses of Morphine throughout the night to try to help her get some relief. She started on the IV drip of Flagyl this morning and we’ll see how that goes.
Last night was wearisome, today has been fabulous. Phoebe has been talkative, silly, feeling well and had a great time in the playroom. She was on her second walk around the floor this afternoon when Dr. Bowers (her Oncologist) came walking down the hall. It was his first time to see Phoebe up and walking and smiling. It did his heart good and it was reassuring for me to observe his response to her. I know people who sign up for a life of treating cancer in children must truly love children, but it was almost like he passed a secret Mommy approval test today when he lit up to see her doing so well.

We had a discussion about Phoebe’s big day tomorrow and I asked a few more questions. I’ve had a difficult time pinning down how I feel towards Phoebe’s neurosurgeon and her Oncologist. At first I felt suspicious, skeptical, then trusting and full of confidence. Now when I see her neurosurgeon I want to throw my arms around him and thank him for so expertly removing the baseball sized tumor from my daughter’s head. But, I refrain. Poor guy, it would be awkward I know, but have you ever felt SO grateful towards someone? I wish I could just tell him how thankful we are, and we have, but I wish he could really know how blessed we are by his skill and what he has done for Phoebe. I won’t dare ever attempt that conversation though, because I would be a sniveling heap of tears and snot. It would not be pretty. I might even break into the ugly cry. Anyway, I’m thankful for the man.

And today when I saw Phoebe’s Oncologist light up with her, it softened something inside of me. He’s a rather clinical guy, but is warm in his own way. I had the revelation while standing there in the hallway that I am entrusting Phoebe to this man’s care. It made me feel like we are on a team, team ‘Fight For Phoebe’s Life” together. The Oncology team here is already becoming so familiar to us, I know they will feel like family as we are in and out week after week, month after month, as Phoebe gets sick to get well. I see why they find satisfaction in their career.

As I write this, Phoebe has been taken off all of her IV fluids and is fully clothed walking around the room talking and playing with toys. She looks healthy, I can’t see the port under her little dress. She looks like she could walk down the hall and right out of this place, it’s bittersweet. We have had a few visitors today which will decrease greatly now that chemo is beginning. For the first while there will be only immediate family allowed and even then only 2 people allowed in the room at one time. We must be diligent about germs and her risk for infection since she will be immuno-compromised. Chemo also generally entails some severe nausea and vomiting and it is of course not convenient to have visitors when she is in that condition. Once we can gauge how she responds to the chemo, more visitors will be allowed although mostly in the common area on our floor.

I have enjoyed the calm before the storm today with Phoebe. I have had her to myself most of the day and it has been good for my soul. Tomorrow a new chapter begins and we step into the unknown. We step into it holding tightly to His hand, the hand that has held a thousand little hands just like Phoebe’s as they walked this path before us. We trust Him with this girl He gave us.

Please pray for Phoebe tonight and especially tomorrow as she begins chemo.

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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