ICU: Advanced Neutrophil Count (March 4th, 2012)

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9:18 am:

Her “Advanced Neutrophil Count” is over 100 today! Yesterday it was 26. It should continue to double and triple these next few days! We would like to see it at around 1800 or higher. Phoebe is starting to pee off all of her fluids! They had to give her 2 extra doses of her ddavp last night to balance her out with all the fluid loss. This is great news! They also said that it will take several days to see the swelling come down even with all this fluid loss because they can’t allow her to lose the fluid too quickly because it creates metabolic and electrolyte issues.

But, this is the beginning! I feel so full of hope this morning. Her immune system is working it’s way back! They will also give her a shot this morning to help her bowels. Often the bowels will stop moving if the body has been on pain meds for an extended period of time and this is the case with Phoebe. The shot will help with that. Thank you all for praying and I hope this good news encourages you all as you head to church this morning! I know we still have some waiting to do, but it feels like we are getting somewhere now.

PS.  I do not mind at all the e-mails I receive with ideas regarding Phoebe’s care. They have all been very loving, concerned, gentle and not imposing one bit, so please do not get the impression that people are pushing their opinions on us. We are surrounded by an incredible group of people praying for Phoebe and we appreciate the correspondence.

Here’s to a great day!

7:22 pm:

Phoebe has had a good day. Nathan’s Mom spent last night with her and I enjoyed a night at home in my own bed. A half hour of boy snuggles in my bed this morning was the perfect way to wake up. They all piled in and we talked about Phoebe. Averic said he had a dream that Phoebe woke up and when he woke up this morning he missed her so much he cried. Poor baby. They all miss her a lot right now. We haven’t really “seen” Phoebe since February 17th and we feel her absence in our lives.

She is still swollen today and I can’t see any noticeable difference as far the fluid loss goes. She has gotten rid of a lot of fluid and her output is greater than her input which is really good. I just wish I could visibly see the fluid reduction in her body. She is on 3 different diuretics and as the immune system continues to ramp up she should start pulling off even more fluid. This is the waiting game and the doctors are guardedly optimistic although it feels really exciting to us. My enthusiasm is easily tempered by the doctors, and I wish I could just feel relieved without that nagging worry that they know something I don’t know.

All that to say, we have lots of waiting ahead of us. Waiting for more neutrophils, waiting for the golf-ball sized blisters on her hand to pop so they can start to heal, waiting for the fluid to slowly make it’s way out of her body, waiting for her to be ready to have the ventilator removed….lots of waiting.

Thank you for waiting with us. It’s been an encouraging day and we are looking forward to many more of those!

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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