ICU: A Little Good News Goes A Long Way (March 5th, 2012)


Phoebe is swollen to twice the size she normally is

7:15 pm:

Update coming soon with good news! Just a bit busy at the moment, but will have a detailed report later! Phoebe is on her way back to us!

9:54 pm:

Let me just make a list of all the good things that have happened today with Phoebe, that’s easiest!

Neutrophil count jumped from 126 to 603, with thousands more monocytes on the way!

Her eyes were very obviously less swollen today and the nurse was able to check her pupils again. (They have been too swollen to even open a bit until today)

Her sodium is remaining completely stable despite the large amount of fluids going in and out of her body.

She is coughing and not staying totally dependent on Respiratory therapy to remove the junk from her lungs, the coughing motion is also great for her lungs getting back in shape.

She has required considerably less pain medicine and remained comfortable.

She is moving her arms and legs quite a bit, but remaining peaceful all the while.

Her PICC line is in, and her central venous line is out (which is good because the venous line has a high infection risk if left in too long)

She had Physical therapy today to help her legs and hips and arms and she remained peaceful throughout.
Her vitals have been flawless all day.

Her breathing tube sprung a small leak tonight which is often a sign of decreased swelling!

As you can see, we’ve had much to be thankful for today. They told us it will be close to another week before we see any major difference in her swelling because it comes off slowly, but I was so pleased with how her eyes looked already. Her immune system is coming back beautifully and we feel very expectant about the changes we will continue to see in her this week.

Her hands and feet look horrible, to be quite honest, but they will heal in time and we are so thankful for that. The blisters on her feet have popped and her skin is laid open in areas, they are still swollen and black and blue on the soles, but the color on top is much better and it is obvious that her blood cells are getting to work there. Her palms are really incredible, both are extremely swollen, but she has a golf ball size blister on her left hand that almost appears as if she is actually holding something, it is so huge. They expect it to pop or reabsorb, but I have never seen anything like it.

She is being seen by wound care and dermatology for her hands and feet and will require a considerable amount of healing before she is able to walk or use her hands again. We will have to be meticulous about keeping infection at bay through that process. We haven’t been able to discuss with our oncologist what the plan will be from here as far as chemo, but we have some opinions and are more than a little relieved she will get a break from all the nasty drugs for a while as she heals. She will need her immune system to heal these hands and feet and recover from the sepsis.

It’s been a good day, with little milestones that mean a whole lot right now. My prayer is that each day this week will bring with it evidence of healing and that I will get to see my Phoebe’s eyes very soon!

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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