ICU: Lots of Prayer Needed (Feb. 25th, 2012)

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12:21 pm:
There is new movie  called “Deadline.” It is premiering in 40 cities across America. In each city the proceeds go to a local non-profit organization or cause. They  have chosen Phoebe for the Dallas premier. You can buy tickets and watch a trailer at the link below.

http://www.deadlinefilm.com/dallas

10:08 pm:

ICU is not my favorite. The waiting room is a sea of grief-worn faces, bleary-eyed parents still in their pajamas at 2 in the afternoon and family members looking forlorn, waiting for news.

We are not allowed to eat in the room here on the ICU unit, so we have to take our meals individually in the waiting room, and it’s just sad to be surrounded by so much pain. I feel fragile myself, and reluctant to talk to people about Phoebe’s situation lest I dissolve into tears in front of a complete stranger who is also weighed down by their own crisis. I remember feeling so scared to move to the Oncology floor because it made the reality that Phoebe had cancer really sink in. Now I just want to go back.

It’s hard to say how Phoebe is doing. One the one hand, her heart rate is beautiful at 138, she is peaceful and her sodiums are coming back in the mid-140’s range. One the other hand, her CT scan showed some pockets of fluid in her abdomen typical of kidney failure, her mental status is not changed, she still sleeps endlessly and her Diabetes Inspidus combined with kidney issues is making her fluid balance very difficult. This evening her blood pressure dropped to 49 over 20 after she had 2 huge wet diapers in a row and they had to give her an emergency fluid push in her IV to stabilize her.

They decided not to do the lumbar puncture to test for Meningitis because she is already getting the antibiotic they would give her if the LP came back positive. The MRI on Monday will definitively tell them what they want to know. The CT scan tonight told them that she does not have Neutropenic Colitis, which is good.

Her Oncologist still says that his working diagnosis is that she is septic from infection even though it hasn’t been detected on any of her blood screens. The ICU doctor says the part that doesn’t make sense, even if she IS septic, is that her mental status has not improved with the antibiotics which is usually the case. This leads to concern that her MRI on Monday could possibly show metastasis of the cancer throughout her CSF fluid. A lot hangs on that MRI and we are trying not to get ahead of ourselves, but it is difficult.

Regardless, Phoebe’s mental status needs to improve. She is all “there”, can answer questions correctly if we bug her enough, and will sometimes open her eyes and make eye contact for a split second, but she is not up at all. She can’t sit up on her own, gets easily agitated and won’t engage. So, we need a miracle..our miracle to return to us..to fight back. We have high hopes that early this next week when her immune system kicks back in, she will be looking better. Please pray for us, we are in the thick of it…

All our love to you all for praying and staying with us on the journey, Phoebe is one blessed girl to have the prayer team she has, and so many people loving her from a distance.

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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