Stable, and Kidney Test Results

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So far this round of chemo has been fairly uneventful. Of course, seven or so days from now her counts should bottom out, so it will really be obvious at that time how she’s doing with this cycle. Phoebe’s sodium numbers have stabilized this week and we even got some answers about her kidney issues.

Nephrology stepped in and gave us some insight from their perspective after her urine tests came back and showed large amounts of Potassium being dumped. We have known that Phoebe’s body was not absorbing Potassium and have been supplementing her twice a day with large amounts to keep her numbers stable. We also knew that this was likely a kidney issue and have been told that these issues often correct themselves once chemo is completed.

About a month or so ago Phoebe was diagnosed with a nasty UTI infection. The kind of bacteria that caused the infection is extremely resistant to antibiotics and therefore must be treated with high dose, IV antibiotics that can also cause kidney damage.

It appears that Phoebe’s tubules sustained some damage, possibly temporary, that have caused Potassium dumping. The low Potassium messes with her sodium and on Sunday her Potassium was dangerously low, which in turn helped her sodium become dangerously low, which caused her seizure. It’s all a mess.

This week they have started Phoebe on a new drug that helps the body isolate and retain Potassium and we are hoping to see good results once it kicks in. This is big stuff..and it’s big because we can’t manage her sodium at home if her Potassium is a wreck. Although there are blood sugar testing kits for people with sugar Diabetes, there currently exists no such testing tool for blood sodiums.

So, aside from taking her to the lab every day to have her port accessed or blood drawn, we can’t track her sodium in a predictable way if her Potassium issues continue. Please pray for balance in her sweet little body. Electrolytes need to come into line. Kidneys need to heal and be restored.

Tonight is her last night of chemotherapy and typically she would be released to come home tomorrow, but with her current electrolyte issues she will stay a bit longer until everyone is confident we can maintain her stability at home.

She enjoyed a visit from her 2 favorite PT’s ever, Erin and Anna, and had lots of fun at the Christmas party in the Oncology playroom. I am always blessed and so impressed with Children’s Medical Center and how they go out of the way to make these kids feel loved and valued by creating a warm and fun environment for them while they are going through the toughest season of their lives. It ministers to my spirit to see so much goodwill and to see so many people loving on my girl.

I also want to say thank you to the life-group from The Village church who has been bringing meals, coffee, and treats for our family. Your hospitality blesses us more than you know and makes our hospital stays more bearable.

We are lying low this week after fighting off a tummy bug. Deacon and I seemed to take the brunt of it, and I am so glad Phoebe didn’t catch it. I have a lot of disinfecting to do before she comes home and we will be staying in a lot until Christmas is over, in hopes that we can keep everyone healthy enough to actually spend Christmas together. I am trying to keep my expectations in check because I know her counts will be low right around then, and there is a very real possibility we could be in the hospital getting a blood transfusion or platelets. But, I am praying for a Christmas together..

Thank you to all of you who love and pray for us,

Merry Christmas!

~Amey

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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.

13 responses »

  1. Praying that this medicine works and that you all can be home and healthy for Christmas. I love that photo and she looks so very cute:) merry christmas!!!!

  2. We’re still thinking of and praying for Phoebe. Even my kids think of her and every time they see a picture on the computer of a little girl they always squel with delight “it’s Phoebe” as if there long lost friends 🙂 even if the picture isn’t actually Phoebe.
    Hoping you all have a happy, healthy Christmas and that the new year brings much needed rest and healing. Love to you all

  3. MERRY MERRY CHRISTMAS Fair Family! I love you all and am continually praying for you and Phoebelicious. Praying for that balance not only for her little body but for your lives. We all need balance in our bodies and every aspect of our lives. The Lord made us that way for a purpose and He can restore and keep us that way. Whata Ya say Lord how about balance for Phoebe and a balanced Christmas together for the Fair’s. We love You Lord! Thank You God for Jesus,for the Holy Spirit, and for our lives. Thank You for your gifts of Grace, Mercy and Forgiveness. Thank you for the Fair Family, for Phoebe and for balance. (((Hugs to All)))

  4. She is so precious! You are in my prayers every day — prayers for the whole family. Please God, let this precious child be healed and this family comforted.

  5. Merry Christmas, Nathan, Amey, Benjamin, Averic, Deacon and Phoebe!!! Praying with you for balance to be restored to little miss Phoebe’s body and for time together as a family on Christmas!! Sending you lots of love from California and from my family to yours!! Singing praises to the Lord for crossing our lives and most especially for His perfect Son!! Christmas blessings to you all!!

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