Oncology Floor Day 2 (Jan. 16th, 2012)

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4:47 pm: Nathan and I enjoyed a night at the Ronald McDonald House with the boys while my Mom stayed with Phoebe last night. Her fever persists and they are still trying to figure out why. Her blood and urine cultures continue to be negative for infection and she seems healthy.

She has had a bloated tummy the past couple of days and they decided today to order chest x-rays and an abdominal sonogram this evening after she has fasted for three hours, just to be on the safe side. They are also consulting with the Infectious Disease team to see if the parasite Phoebe was treated for before she was diagnosed with her brain tumor might still be causing problems.

Taking a walk with mom and dad!

The ID team did not re-test her stool for parasite when we were admitted because they decided it was too close to the end of her anti-parasite medicine to get a good read. Since she seems to be having tummy trouble again, they have ordered a 3 day stool test to see if we can at least rule that out. I pray she does not still have that pesky parasite on top of everything else.

The situation with my boys is really grieving my heart today. I see them misbehaving and acting out and I know this has been difficult on them. They just need life to return to normal and I’m afraid it won’t be that for a long time. Meanwhile, I feel like we’re losing ground in areas where we have worked diligently with them up until all of this. It’s difficult to remain consistent when they are with a different person each day and the rules change from person to person. They went home with my Mom tonight and I think it will do them good to get out of the hospital and our little room at Ronald McDonald house and run free in the country.

We found a house to rent and are hoping to move in on Wednesday. Nathan sent our pathology reports to his Uncle in Germany who is a pediatric cancer researcher and we look forward to hearing his insight into Phoebe’s case. He spent a large portion of this afternoon doing paperwork and getting things organized for our move. We did not ever imagine ourselves living in the heart of Dallas, that’s for sure. We thought we were on our way to an agricultural life. Never has our life course changed so drastically and so quickly in our married life together. It’s been quite the tailspin!

But we are thankful, things are falling in to place and we have had so many people willing to help, to be here in an instant if we need them and offer their services or talents to bless us…it’s been incredible. Thank you to all of you who have reached out to us in prayer or by ministering to our immediate practical needs. The body of Christ is beautiful in action!

This week we need to see Phoebe’s fever abate. Her sodium needs to be totally 100% regulated into a predictable pattern, and her tummy troubles need to resolve. We can not move forward with her treatment until her body is ready. Please pray for all of these things.

She is not feeling well right now with her tummy issues and has been sleeping quite a bit so we are trying to keep visitors to a minimum this week so that she can get healthy for the start of chemo next week. If she feels better, we’ll let you know.

8:44 pm-Prayer: Please pray for Phoebe, her hemoglobin is at a 7 (healthy is 12) and this is contributing to her high heart rate (200, supposed to be about 100-110). They are going to give her a blood transfusion to regulate her hemoglobin. Her intense abdominal pain is the other contributing factor. She is crying out and just very miserable. It might be a long night. Asking for prayer for these things.

10:13 pm-Prayers Answered: I feel like I just watched all of our prayers get answered in a matter of about 30 minutes from the time I posted asking for prayer! Phoebe’s tummy got soft and let go of a lot of air that was blocking up her intestines and her heart rate went from over 200 to 120 and she is sound asleep!! Thank you all for going boldly to the throne on Phoebe’s behalf, that was awesome. The blood transfusion is on hold since her heart rate is so good!!

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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