One Month Anniversary (Feb. 1st, 2012)

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10:45 am:

One month ago today Phoebe was diagnosed with a brain tumor. I can’t believe we’ve been here every day of 2012 so far. She has come though everything so well, cradled in the prayers of thousands of people.

I woke up this morning to find Phoebe on all fours in her bed saying “I get down!”. I leaped up to help her just in time and got her settled on the couch with her Magnadoodle. She is feeling good today and looks great! They are now telling us that it is a possibility that we *might* get to take her home if we can get her sodium perfected with the ddavp shots on a 12 hour schedule and if she will start taking her meds without spitting. In other words, it could be several days, but there is a little glimmer of hope that we will get to be home even if for a short time.

We are still not *exactly* sure how the chemo rotation works and everyone seems reluctant to give us any type of “usual” framework since each case is so different and there are so many variables. If we go home tomorrow and she spikes a fever we come right back, hook her up to an IV and put her on antibiotics and we are in-patient again. If she starts to get very sleepy and lethargic and bruise easily, her platelets are low and we will come back for a platelet transfusion, and the list goes on. I can see why they don’t like to commit to “4 days on, 10 days off” etc., because seldom does it work out that way in the case of AT/RT children with Diabetes Insipidus.

Even if we got to leave just for a day to take Phoebe home and show her her bedroom and the new house and be together all six of us, it would be fantastic. I am thankful for the progress she has made in so many areas, but feeling nervous about her medicine taking. She has about 8 med-takes a day that we have to have down pat before we are released and right now she averages 30-45 minutes per med because she holds it in her mouth. She is holding her saliva in her mouth even when she’s not taking any medicine and won’t open her mouth to talk to people now. I know this is a process, but it’s very frustrating to see her take all day to do something that could be done in five minutes and to know we can’t go home over something so easily fixable.

The other good news before I sign off, is that Phoebe asked to use the big girl potty this morning for the first time since her surgery. She had been potty trained just 2 months when we came to the hospital and she has been on catheter and diapers since then for urine output measuring. When she was finally off the catheter and was able to use the potty she felt to weak and wobbly, but today, she proudly went! It was a progress marker and it felt great to see her more herself. Little by little, day by day!

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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