Creatinine #’s (Feb. 20th, 2012)


7:57 pm:

Phoebe’s Creatinine #’s are still the same and they are hoping to see them come down tomorrow after she has had some time to absorb all of the extra fluids she is being given. When the numbers come down they will know that she was just dehydrated to the point that it effected her kidney function. If the numbers are not changing then they will look more at the possibility of kidney damage. If there is kidney damage, it could be temporary or permanent, there are several unknowns right now.

She continues to be very groggy, zoning out here and there and incredibly overcome with sleepiness. She is also very emotional. I think tonight is the first time I have seen her cry simply out of sadness and for no other reason than she just felt sad and tired and worn out from it all. It was a very different type of cry than when something hurts or is uncomfortable. All I could do was climb into bed with her and hold her. She put her little noggin on my shoulder and just cried and cried, which in turn made me cry.

We will have to wait another day or two to find out if her blood cultures come back positive for infection. She has been fever free for most of the day and that’s a good sign. Her sodium is at 150 and they are trying to bring her down slowly once more. It is amazing how her tummy deflates when her sodium levels are good, and how instantaneously it gets hard and distended when her sodium levels are high. No one here has seen a patient present that way with high sodium levels, apparently it is very atypical.

It was a roller-coaster kind of day and I expect the next week or so will be much the same as her blood counts drop. Please pray that Phoebe’s body will have the strength needed to fight the cancer and maintain healthy function of all other organs. Also, please pray for her little spirit and her morale which seems to be pretty low right now. She is feeling down and needs a lift.

Thank you all for continuing on in this fight with us!

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.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s