The New “NORMAL” (Jan. 20th, 2012)


5:22 pm: Today was the most normal day I have experienced in the last 20 days. I woke up this morning in the same place as my husband and as the sun warmed it’s way through our window, one sleepy disheveled boy after another made his way into our warm bed. It was great. But I miss Phoebe at home.

Just before Christmas Nathan and I bought Phoebe her first little girl bedroom set off Craigslist and kept it in storage until we had a place to live. The other day when I went to our rent house for the first time, Phoebe’s little room took my breath away. As you can imagine, after having three boys in a row, a pink room full off ruffles with a bed canopy and baby dolls everywhere is almost magical. I can’t wait for her to see it for the first time. This morning Averic (7) said “Phoebe’s room is SO, SO frilly and girly!” with a hint of disgust. I said “I know, isn’t it great?!”

Phoebe takes a nap.

It doesn’t look like we’ll get the 2 days off at home with Phoebe before her first chemo treatment begins. Her sodium took so long to regulate and that has things running behind. They would like to get started as soon as all of her preliminary tests are complete. The AT/RT cancer that Phoebe has is very aggressive, so the sooner we get to killing it, the better.

I have received several e-mails inquiring about other more natural treatment options for Phoebe and if we have considered any of them. We are familiar with a few other more holistic cancer treatment options and as a rule, we generally fit into that mindset regarding many of our life choices. We water-birth babies au-naturale, we do not vaccinate, we eat on the healthy side and we’d rather do it ourselves when it comes to things like treating ailments or sickness. BUT…

Less than 40 children in the United States are diagnosed with AT/RT cancerous tumors each year. Just five years ago the Oncologists would have told us to take her home and enjoy her for the next 3 or 4 months until she passed because there was no chemo protocol aggressive enough to treat this cancer. We were in shock when the Oncologist told us that Phoebe’s baseball sized tumor most likely STARTED growing just THREE months ago. This is exactly what would happen again without chemotherapy. And not just any chemotherapy; this very intense, aggressive, hard-hitting 12 weeks that we are about to embark upon.

In other words, we do not have the luxury of time on our side, in seeing if a more holistic method would work. AT/RT is a nasty cancer and we have to fight dirty for lack of a better word. So, although my personal inclination is to gravitate toward a more holistic approach to fighting cancer, the protocol we are going to use with Phoebe is the only protocol thus far to have a 50% survival rate. If you read other protocol studies you will find a 10% survival rate or thereabout, but mostly you will find that AT/RT does not have a lot of research behind it because it is so rare and funding typically goes toward finding a cure for more prevalent cancers.

So, although we are not considering a “natural” approach to fighting the cancer itself, we are definitely looking into options for improving Phoebe’s over all health so that her body will be in the best shape to both withstand the strong chemotherapy drugs and fight the cancer. I appreciate all of you who have sent suggestions or recommendations and know that I have looked into some of these options for Phoebe.

Tonight Nathan’s parents are driving out to stay with the boys and help out for the weekend. Laundry and getting ready to start back to school on Monday are on the agenda. Nathan and I will work out a schedule for trading off teaching the boys and being at the hospital with Phoebe and we are all looking forward to getting back into a routine.

Phoebe is having a good night, eating lots of pretzels and oatmeal and fruit. Other than her pink-stained belly and her new port, you wouldn’t even know she’d had surgery today. She is very content. Phoebe can have visitors now that she is more stable, although there is a 50% chance she’ll be asleep if you come. Once chemo starts, her visiting will be very restricted since she will be immuno-compromised.

Thankful for a good day, hopeful for many more of those to come and SO blessed by the e-mails, messages, prayers and words of encouragement that have come our way.

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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