Phoebe’s Busy Day (Jan. 23th, 2012)


12:52 pm: Our day began bright and early with a room change, we are now in Room 222 on the same floor. They do this so they can deep clean the rooms. Right as we got all of our things into the new room, they came to get us to go down for Phoebe’s MRI. She was not scheduled for this today, but 2 days ago I noticed a pocket of fluid on her scalp right beneath her incision area from the brain surgery. The Neurosurgeons originally were not concerned, but last night before bed I felt her head again and the mushy pocket had turned to a firm goose-egg. Phoebe’s neurosurgeon stopped by this morning to check it out and decided that she needed a quick/un-sedated MRI to check her fluid build-up in the brain. So, off we went.

Phoebe did great in her little 3 minute MRI and actually fell asleep, but not before she danced a little jig for the MRI people and clapped her hands to the Dora music they played over the speakers. She lives up to her name meaning: “Bright, illuminated light”. Right after that we were taken over to get prepared for Phoebe’s lumbar puncture and sisternogram. They will test her spinal fluid to rule out infection as the cause of her persistent fever and she will have scans every couple of hours to follow the progress of the dye they injected during the sisternogram.

Mom and I went down to the cafeteria and had some lunch while we waited for Phoebe. I have now tried almost every single food item in this hospital.  They just wheeled her back into the room and now we are headed back downstairs in a few minutes to get the excess fluid drained from her head.

After that we are supposed to have a consultation with the GI team because Phoebe’s liver enzymes are high for no reason that they can discern. I look forward to discussing pro-biotics with them and how we can get her tummy flora back in balance. I know that her GI stuff has been all out of whack since she was on the anti-parasite medicine and I’d like to correct that and see if doesn’t completely heal her tummy issues.*sigh…when it rains, it pours. We have been going since 6:30 this morning and Phoebe is pretty pooped.

9:52 pm-After the Busy Day: Amey still doesn’t have internet so she text me to update everyone tonight. It was a day of tests: The MRI didn’t show any fluid buildup in the brain..only the excess fluid on the incision site which they drained today. They want to see if it builds up again and then make a plan from there. The instant test for bacterial on the spinal fluid was negative (Praise God) but they will do a 3 day grow test to get definitive results. We still have not SEEN the GI doctor but he ordered the Doppler ultrasound on her GI tract tonight. The doctors will look at the results and discuss with us tomorrow why her liver enzymes might be high. Like the game, “where’s Waldo,” we could say that about the GI doctors. We have Neurosurgeons, Oncologists and Endocrinologists coming and going but it has taken almost a week to see a GI doc? The X-ray showed that her bowels were less backed up than a few days ago but still a problem. Her stomach is not as big as it has been so her breathing is a little easier. She still has a fever but she hasn’t been on Antibiotics for a few days indicating to the doctors that the fever is from her hypothalamus not regulating itself.

I went to see Phoebe tonight. When she saw me, she asked for my son, Robert. We played Patty Cake for a few minutes. Her face is rounder from the steroids but she was worn out. She fell asleep quickly, talking in her sleep, but as soon as she was quietly sleeping, she had to wake up because it was time to go downstairs for another test. This is the first time that I have heard her cry. Poor baby is so exhausted.

The Oncologist came by and confirmed that there was no sign of the tumor on the MRI. I asked if she would start chemo tomorrow, as planned. She said that the team would have to meet to discuss it. They want to get it going since this is an aggressive, fast growing disease but the fever is worrisome.

Please pray for Phoebe’s temperature to stay normal. Please pray for her to have no bacteria in her spinal fluid and her digestion and liver enzymes return to normal. Please pray for the fluid in her head to not build up. Please pray for wisdom for the doctors and nurses.

I thank the Lord for all of you and your prayers.

Please pray for ANSWERS today. Why does she still have fever? Does she need a shunt to drain the fluids off her brain? What is causing her elevated liver enzymes? Is there anything we can do to help her tummy flora and thus her tummy pain?
These are the current concerns and issues we need covered in prayer. We are being blessed by some incredibly generous givers who are helping to meet our financial needs during this season. Thank you for being a part of Phoebe’s care. And to all of you who are praying your hearts out, sharing Phoebe’s story in your churches and Bible study groups and with your friends and family, thank you! This is awesome to see. It’s so wonderful to read through the guest-book entries and see the ways that we are connected to you all…

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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