Heavy Heart (Feb. 13th, 2012)

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8:45 pm:

My heart is heavy tonight as three AT/RT families we know of are taking their child home for hospice care or have lost their children in the past few days. What do I do with that kind of news? I just don’t know…

Tonight after dinner, the boys asked me to tell them a story. Of course these stories have to include light sabers, a villain of some sort and 3 boys on a mission. So, tonight I told a story about a monster that needed hunting down and three light-saber wielding boys who flew on a super-sonic skateboard until their swords detected evil with a loud ringing sound. The loud ringing sound started once they neared the hospital where Phoebe is and the boys tracked down the monster on the Oncology floor. The monster was named Cancer and the boys burst into each room defeating the monster with their light sabers and the Holy Spirit descended upon the child and healed him/her instantly, their hair grew back and they got up and put shoes on ready to leave the hospital. When I got to the part about Deacon defeating the monster in Phoebe’s room, Ben laid his head on the table and started weeping. My precious 9 year old boy is so broken hearted over Phoebe’s situation. I just held him and cried with him. I talked about it being good to cry with all of the boys and how important it is to say how we feel, how much we miss her, that it hurts to go through this etc. I’m glad it happened, but oh how my heart grieved for my boy.

Ben asks about her daily, wants to visit her often, but has been sick. I think I will take him first for our Mom and son day with Phoebe. Averic asks a lot of questions. Deacon says he misses her but doesn’t really quite understand.

After dinner we Skyped with Nathan and Phoebe at the hospital and I could tell Ben just wanted to reach out and grab her. He kept remarking about how cute she was. This was his first time to see her without hair. The other 2 boys tired of Skype and went off to play Legos, but Ben stayed glued to the screen talking to her, watching her color, giggling about her Phoebe-ness and her sweet little chuckle.

Phoebe has had a pretty good day herself, I think it’s just been a rough day emotionally for the rest of us. This routine is wearisome and not being able to bring Phoebe home has been a let down. We just miss her in our family, in our home, at our table, running around with the boys.

It’s hard to believe round 2 of in-patient chemo starts Friday. It seems so crazy to load her up with chemicals right now when she is still trying to fight her way back from the last round. Please pray for her little body to rally and be in a better place by Friday.

We have been receiving the sweetest care packages full of Valentine’s Day goodies for Phoebe, little knitted hats and headbands with bows and blankets and all kinds of fun things, so thank you if you’ve been a part of that. Phoebe is one very loved little girl and we have such fun giving her all of these things.

Our prayer requests tonight are the same: sodium level, tummy pain and bloating, open sores and fever. Thank you all for staying with us through this storm.

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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