Hold Down The Fort (Feb. 7th, 2012)

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5:56 pm:

Dr. Bowers told us today to “hold down the fort” until Friday-ish when Phoebe’s immune system is expected to start the upswing.

“Hold down the fort” is the perfect sentiment here because it feels like we are hunkered down, dealing with whatever attack comes next and holding our breath waiting for some relief for our sweet girl. Her heart rate has camped out in the 180″s today and should be in the 110-120″s range. Her breathing is very shallow and fast, possibly a combination of tummy pain and her compromised lung.

Her sodium is 156 which is much too high still. They are having a very difficult time bringing it down and are not sure why, which is disconcerting. We are told quite often that Phoebe obviously did not “read the textbook” when it comes to how Diabetes Insipidus works. She is all over the place with her sodium numbers and it is confounding the medical staff here. Is it not enough that she is one of only 40 children diagnosed with AT/RT cancer in U.S. each year? Now she has to do DI her own way. I think my gray hairs have doubled in the last 38 days.

Her oxygen is better today, and she is tolerating the TINY little bit of formula they are giving her through the ng tube. The plan is to up the cc’s slowly and see if she can tolerate the food. In the meantime she is still receiving IV nutrition as well as lipids.

So, we are hanging in, doing life with chemo. The last several days have been a crash course in what the next several weeks will be like and it is an intense pace. I know many other families have walked this road before us and come out on the other side, and those stories keep me going. I do find however, that I can not read AT/RT blogs of the children who did not survive. I start to hyper-analyze Phoebe’s situation and get fearful and neurotic. It’s not a good place for me to go.

I just have to live in this moment. Enjoy her in this moment, blow bubbles with her, watch Veggie Tales and make her days as fun as they can possibly be while she feels so bad. So, that’s what we’re doing.

I never know how much medical stuff to share on here. I know it’s easy to get bogged down in the medical details, but it helps me keep track of things and it’s good for me to just write it all out.

Thanks you all for praying, your sweet gifts and thoughts and words are a treasure to us.

PS. Averic is still struggling, but I think we’ve been given some direction from the Lord in how to help him, so thank you all for praying for him especially. We feel like we have a better understanding of what’s going on with him.

 

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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