Her Hair is Falling Out (Feb. 8th, 2012)

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11:35 am:

Her hair is falling out. Her bed is covered with sweet little blonde hairs and the hair on her head resembles a bird’s nest. I will cut some of it today to save and then I will wash it and see what happens. I can’t imagine Phoebe without her curls, but I do know she will be cute, even bald.

Last night was the first night I did not sleep at all in the hospital. Phoebe was sleeping peacefully because she got a morphine pump that allows me to push a button and give her morphine whenever she moans or is in pain. It will not allow you to overdose your child, so that option was nice and afforded Phoebe a great, relatively pain free night of sleep.

I however, was up tracking sodium levels and fluid intake all night and bothering the poor nurse because Phoebe’s sodium was all over the place. If her sodium drops too fast she can seize like she did twice in the ICU, if it goes too high, she can have a stroke, so I am a little obsessive about sodium levels. The first 30 minute long seizure she had in ICU is something I never want to witness again.

She received her DDAVP shot last night at midnight. It is supposed to last for 12 hours until she “breaks through” and starts dumping all of the fluid her body has been retaining. At this point she gets another shot. When the night began her sodium was 147, which we were pleased about because she was climbing back down from the high 163 a few days ago. 135-140 is the goal. Her next sodium came back at 154, grrrr. At 4 am she started breaking through and had four full diapers within 45 minutes. She usually doesn’t urinate at all while the DDAVP is in effect, so I chased down the nurse and we discussed why it was happening, to no conclusion. The dr was surprised too.

So, then of course I had to keep an eyeball on her for fear that she would make another giant leap in sodium. They tested her urine and found that she was releasing salt as well as water which is what normal people do, so they just kept an eye on her. I could not sleep though, and when she would wake up with pain (usually from the open sores on her bottom) I would check her speech and lucidity to see if she was still “with it”, hoping to detect if there was any change in her sodium.

Finally, around 6:30 she started asking for milk and juice! She was recognizing her need for fluids which is great. I gave her some milk and juice (the first fluids she’s had by mouth for about a week) and a couple of Goldfish crackers. At 7:30 they gave her the next DDAVP shot. We are now at 156. They still can’t explain why she continues to climb in sodium in spite of added fluids and a higher DDAVP dose. But, they can’t just load her up with fluids because she will then make a sudden drop that could throw her into seizure. It’s very frustrating, because high sodium really makes her feel crummy.

So, that was my crazy night. The great part is, I got to watch my Phoebe sleep all night. I got to snuggle her when she said “sleep wif me Mom.”, and pray her to sleep when she told me her bottom hurt. Praying always lulls her to sleep, I love that.
Today I’m feeling thankful that our friend Amanda Henninger and Nathan took some good pictures of her last week when she was feeling better and her hair was nice and clean. Our nurse today said “I’m finally starting to understand Phoebish.” I loved that, we now have coined a term for Phoebe’s cute form of language; “Phoebish”.

Hopefully I’ll get an opportunity to update this evening when I am home. Mom is coming to stay tonight with Phoebeliscious.
Thank you for fighting with us and for us! This very moment she is asking for french fries! I am praying that her appetite is coming back.

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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