ICU: Gratitude (March 6th, 2012)


9:04 am:

Neutrophil count yesterday….603.
Today……..3,000!!!    (Yes, this is a revision from the 339,000 I had here earlier, the nurse calculated incorrectly.)
An ANC # of 3,000 still means her immune system has recovered!

5:22 pm:

Imagine the thrill I had today when upon arriving to the hospital I discovered that Phoebe’s hands are HALF the size they were yesterday! Her whole face looks so much better and her eyelashes can be seen again since the swelling has gone down. She has even made a couple of peeks out at us which is just heavenly! We erupt in “oohs” and “awwwws” whenever she tries to open her eyes. It’s so sweet seeing her move.

She will lift her hand as if to wave, or grab the cord to her breathing machine and hang on to it. Her feet are getting better, but the only way you can tell is that the swelling is considerably less and the color has returned to the top of her feet. Until a couple of days ago her feet had the appearance of purple socks the discoloration was so bad. It is quite  obvious now, in spite of all the broken skin and burst blisters, that the blood flow and healing are starting to really make them better.

Today as I drove to the hospital I was thanking God that I could make that drive and actually enjoy it, that I had the luxury of a clear, unworried mind so that I could really appreciate things like the weather, the beautiful houses I was passing, the clouds. I am thankful to be able to breathe easy, to look at my girl and know that she is working her way back from this incredibly scary bout of sepsis. Eyelids less swollen and shrinking hands are miracles in my life right now and I hope it remains so.

How many times I have thought these last several weeks that I took our lives for granted before cancer and assumed my children would skate by without any major setbacks on into adulthood. I knew that Phoebe and I would be best friends, I imagined mother-daughter talks, shopping for her wedding dress and of course being with her when she herself became a mother. All of these things seem like precious gifts that I no longer automatically assume I will receive. They are the deep longings of my heart for a life with my daughter. There is so much to look forward to! My depth of gratitude for the seemingly simple, has multiplied by a zillion in the face of all this mess.

I know that it is unlikely that Phoebe will be able to have children because of her damaged pituitary gland that regulates hormone production and one of the chemotherapy drugs she receives. Realizing that for the first time caused a little place inside of me to go numb. Understanding  what she is trading for her life, for a chance to grow up, makes the fight all the more impassioned for me. Cancer has already stolen much and things like fertility easily fall by the wayside in the quest to just live. I don”t want to give up any more ground, don’t want to make any more concessions, but cancer drives a hard bargain and eventually I feel I might be willing to trade anything for her to live. That perspective really reduces any ingratitude I might have right down to zero.

Life is a gift, and now when I see people wasting their’s it makes me mad that Phoebe is fighting so hard just to have a taste at what they so flippantly throw away. “C’mon people!” I want to say, it’s a gift, an invitation to the most incredible adventure. It will be marked with bright beauty spots, seeing your baby for the first time, loving someone so much it knocks the breath right out of you, standing in awe of the majesty of a mountain or a sunset that deserves a hallelujah chorus. There will be parched desert seasons, and times when grief is a deep abyss or your goal for the day is just to get out of bed. But this is the stuff of life in a sin-tainted creation.

And now we have to beat it back, like cancer, we have to stare it down until it whimpers in the corner. I think of Genesis 4:7b)  And if you do not do well, sin is crouching at the door. Its desire is  for you, but you must rule over it.” And so I endeavor to rule over any ingratitude that might rear it’s ugly head. There’s too much to fight for, and having the opportunity to fight for what I formerly assumed was a “given” has given me the gift of being able to recognize the miracle in each moment.

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.

One response »

  1. You have given me new perspective on life with my daughter’s. My heart breaks for Phoebe and for your family. Please know that you are in our prayers. I am humbled reading this. Thank God for your courage.

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