Bumpy Day (Jan. 30th, 2012)


4:56 pm:

Phoebe is asleep, making up for a rough night without much sleep. I got a phone call from Nathan at 2:30 am telling me I might need to come up to the hospital because he was extremely nauseous and was afraid he had a stomach virus and didn’t want to be a threat to Phoebe. He decided to wait it out and call back if it got worse, but I never received the call. It seems he just ate something that disagreed with him.

During the day she gets IV meds that prevent kidney problems and help with other preventative measures against the effects of chemo drugs and at night the IV infusion of chemotherapy drugs takes place. She is often given pain meds in conjunction with the chemo to help her sleep.

The Doxirubicen that she was on last night made her pretty ill and she had some vomiting today. Her sodium was down to 133 this morning and she was craving Tostitos this afternoon. It’s amazing how the body craves what it lacks. She is now at 140 and just got her ddavp shot.

We had a nice day of school and I enjoyed speaking Spanish with yet another lawn care guy that came by to offer his services. We have met a few people in our neighborhood and everyone seems very friendly.

The night before Phoebe started chemo we took a trip the playroom. Phoebe was feeling particularly good that day and she was happily banging on the xylophone when a young Hispanic girl walked in with her son. As I watched her interact with the playroom volunteer staff, it became obvious that she didn’t speak English. I waited until she got her 1 yr old settled with a toy and introduced myself. Marta and I exchanged stories and she told me her son had Leukemia. I explained Phoebe’s cancer and surgery and we connected over our similar circumstances.

After a few minutes she asked where I learned my Spanish and that opened the door for me to share about our ministry in Mexico and that Phoebe has dual citizenship because she was born there. Marta and I laughed that she was from Mexico and her baby was born here and I was from here and Phoebe was a Mexican citizen. I soon found out that all of Marta’s family is in Mexico and that she is living with a host couple while her son has treatment. I immediately empathized with her. I have lived in her culture and know that if she was in Mexico right now, she would be surrounded by extended family as she goes through this heart wrenching time.

I know what it’s like to be in a foreign place in the midst of a medical crisis and not understand the language and to miss and need your family. My heart went out to Marta and her little boy “Angel”, and I am thankful that God gave me the opportunity to be a warm, understanding face in her life at that moment.

Tonight I met with a nurse who gave me an overview of what to look for as Phoebe goes through chemo. We talked about white blood cell counts, hemoglobin, platelets, neutropenia and how to administer ddavp shots. I had to give my first injection to the nurse. Poor lady, I can’t imagine that being part of my job, to allow rookies to give me injections! Anyway, I learned how to draw up medicine out of the vial, prepare the shot site and give the shot. Soon I will be the one giving Phoebe her shots and it will become second nature.

Right now Phoebe’s Mammaw is feeding her chicken and she is content. I am praying that tonight’s chemo infusion is not too rough on her, but I expect that it might be since it is the same medicine she received last night. After tonight Phoebe will get a break from most of these chemo meds for a few days and only be on one.

Thank you all for continuing to pray! When the kids are asleep and the house/hospital room is quiet for the night, I enjoy sitting down to read and be encouraged by all of the guestbook posts. Also, I apologize that I don’t have the time to individually thank you right now, but I do recognize some of the names in the guest book as people who have given towards Phoebe’s care. Some of you, we don’t even know in person, but know that we thank you and we are thankful for you!

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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