ICU: Will work for Neutraphils (March 1st, 2012)

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5:32 am:

Correction: Phoebe’s lungs are not collapsed, rather she has “small lung fills” because of the immense amount of fluid taking up space in her body. Sorry about that. Someone yesterday used the word “collapsed”, but apparently that was too strong of a word.

This morning she is receiving a transfusion to bring up her hemoglobin, platelets and hematocrits so she will have some help until her body starts producing more. She has had a peaceful night and her screen numbers look good, her body just needs to start producing those cells on it’s own. Please continue to pray for that until we see change.

2:16 pm-No white blood cells. No neutraphils. Boo:

I’m not sure if I have mentioned Phoebe’s feet yet in any of my posts, but please pray for her little feet. They are extremely hot, swollen, red, taut, and have petachie on the bottom.

petechiae /pɨˈtkɪ./) is a small  (1-2mm) red or purple spot on the body, caused by a minor hemorrhage (broken capillaryblood vessels).[1]

This morning the bottoms of her feet were also covered with broken capillaries and black and blue. They say they have never seen it before from chemo and are not sure what it is. Her hands are hot, red and swollen as well. They expect that when her immune system comes back, the problem will correct itself. More waiting. Poor baby, her feet look terrible and I can’t find a picture on the internet that comes close to what they look like right now.

The numbers on her screen look great; she is breathing comfortably with some help from her tube. They went down quite a bit on her settings and she has tolerated that very well. Her heart rate is excellent, 110 as I write. Blood pressure 100/64, breaths per minute, 39, oxygen 96. She is comfortable and riding out the storm peacefully. I just wish those screen numbers translated into an awake, breathing on her own, regulating her blood pressure – Phoebe.

Today they are taking out her central line to prevent infection and adding a picc line since her port line has moved over and up towards her neck. They will have to repair the port at some point, but not now. A picc line, I am told, can last a long time as well. The procedure takes an hour. They have been giving her a blood transfusion and platelets in order to get her ready to tolerate it.

All that to say, a lot more waiting for white blood cells and neutraphils around here. Next test for those will be at 4 am. Sorry I scared you with my 5 am post, lol! Day is night and night is day here in the ICU, and it didn’t even occur to me that I might wake you from your sleep and alarm you with an update at such an hour. I’ll try not to do that again! 🙂

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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