ICU: Fungal Infection/Intubation (Feb. 26th, 2012)


9:37 am:

Phoebe’s blood pressure just dropped into the danger zone for the second time in the last several hours. They are having a difficult time getting it back up and are preparing to intubate her. They will also place a Picc line or central line (that can deliver meds directly into a main artery) because she needs more access.

Her cultures tested positive just this morning, for yeast and another unspecific fungus. The doctor said they will start anti-fungal meds immediately. In a sense, this feels like good news, because it gives a possible reason for her current state other than cancer metastasis. I know that sounds crazy, and I know a fungal infection is serious business especially while she’s neutropenic, but I’ll take it over cancer spreading any day. At least now we have something specific to focus on.

That’s all the news I have for now. I will update again later in the day. Please pray for her body to fight this fungal infection, that she will do okay with the anesthetic while they intubate her and during this next period of time while they keep her sedated. Pray for her blood pressure to regulate and that killing this infection will be the key to seeing Phoebe wake up and continue to fight this cancer!

2:27 pm-MRI Tomorrow:

She is intubated and peaceful with two new lines, one in her leg and one in her arm. She had her lumbar puncture this morning and we will wait to hear the results from that regarding the possibility of meningitis and/or the presence of free-floating cancer cells in her spinal fluid.

The MRI will be at 9 am tomorrow morning and we will most likely have the results at some point in the afternoon after the neuro-radiologist reads it. This MRI carries the weight of the world. If the cancer has metastatized the chemo stops. We have always known that. You get one good chance to fight AT/RT cancer. When it comes back after chemo, it rages like a monster. So, as you can see, our hearts hang on that MRI result.

We feel joy, that maybe we are “only” fighting fungal sepsis. We feel dread about what tomorrow could hold. We are staying in the moment because we have grace for that. Tomorrow’s grace has not arrived yet, we’ll get that tomorrow. Today’s worries are enough for today. We feel nervous, peaceful, hopeful, broken-hearted…a whole array of emotions.

Thank you all for continuing to pray and reach out to us. We gather strength and courage from knowing there are so many of you storming the throne for our Phoebe.

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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