Feeding Tube and Homeschool (Feb. 2nd, 2012)

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2:36 pm:

I just wanted to post a short update to let everyone know that Phoebe got a feeding tube today. This is just a tube that goes down her nose and throat and into her stomach. This will help with taking her meds and eating and drinking since she is not really fond of any of those things right now.

What I’m learning about the chemotherapy meds is that you feel the effects for several days after receiving them and the cbc numbers usually make a dive between 7 and 10 days after chemo treatment. So, her nausea and not wanting to eat or drink are not so abnormal. I just can’t imagine not feeling thirsty after having nothing to drink for so long. They of course have been making up for her lack of thirst with IV fluids and now we will hydrate her through the feeding tube if she refuses to drink. They will also give us a formula that goes into her tube for food. Poor baby.

Some of you have asked for our personal address to send mail and if you e-mail me at hosea214@yahoo.com I will e-mail you back with that information.

Others have asked about the boys schooling during this time so I wanted to address that here as well. We have been home educators from the start with our boys and Nathan has filled in for me when I was teaching in a YWAM school or out of town or attending School of The Bible classes on our missions base in Mexico. We both enjoy teaching our children and it is just the way we have always done life with them. Nathan has been granted a sabbatical during this time that Phoebe is going through her intense chemo protocol and we are sharing the privilege of teaching the boys.

We will continue to home school during this season as we feel that it is how God has directed our family to educate. Our boys are doing much better now that they have a consistent daily school routine and have either Nathan or myself with them all of the time. When family members stay with Phoebe we are both with the boys and that is always nice.

In other news, if Phoebe does well with her feeding tube and is stable, they will let her go home this weekend!! Please pray that she would respond well to the tube and the formula and drinking. I don’t know how it all works just yet, but like everything else, we will learn. Having everyone under the same roof will be the most amazing feeling!

Thank you all for praying and hoping and believing with us! One day Phoebe will get to read all of the beautiful thoughts and prayers in her guest book and marvel that so many people were on Team Phoebe.

10:38 pm-Good News!

Phoebe’s Cerebro-spinal fluid tested negative for cancer cells!!

On Phoebe’s first day of chemotherapy she had what they call “intrathecal” chemo which is where they remove some of the CS fluid and replace it with chemo meds. The fluid they removed had been making it’s way through her brain and spine for the past 3 weeks without any chemo treatment. It passed right through her tumor site and yet it showed NO EVIDENCE of cancer cells!!

This was excellent news to hear! For now it means that Phoebe will not receive another lumbar puncture and intrathecal chemotherapy tomorrow morning, she will only receive her IV chemo. It also means that the nasty stuff is not traveling to her spine where it could cause more tumors.

It does not mean that Phoebe is totally healed. If Phoebe was totally healed she would not have the Diabetes Insipidus or the central fever that she is still having from time to time. If the cancer was gone, that healing would have to manifest itself in an obvious way because as far as I know with AT/RT cancer the only way to determine if the cancer is gone is to have a clean MRI with no tumor growth over a long period of time.

We are rejoicing to hear that the cancer is not traveling through her CS fluid! This is excellent news! Thank you all for praying for our girl. God is taking such good care of her (and us). I know this is part of the roller coaster and tomorrow could be a tough day, but for this moment we are smiling and at rest.

Still no news of when we might go home. Phoebe spiked a fever today and that does not bode well for home-going. It is likely a central fever, but they will culture her to be sure. She seems to be tolerating her feeding tube well so far, and I know she doesn’t miss taking her meds by mouth. A couple of our friends are coming tomorrow to give our house a good thorough cleaning and disinfecting just in case Phoebe gets released to come home this weekend.

We are beyond blessed by our friends and family and even complete strangers who are sending us cards, making home-cooked meals for our family and praying for us. Thank you…everyone.

All our gratitude,  Amey

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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