Good Day/ Respiratory Tests

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She’s doing so well! Her bi-pap machine is really giving her some relief from working so hard to breathe and the difference in her energy level alone is pretty amazing. Her muscle strength is improving with her increased energy and she is more engaged altogether. It’s amazing what breathing correctly can do for a person!

The neurology team assessed her today and said that the weakness in her hands and feet is almost certainly chemotherapy induced neuropathy, but that they are unsure what is causing  her respiratory/diaphragm weakness. They would like to perform an ECG muscle test which is a not-very-fun procedure where needles are placed in her skin and then her muscles are shocked to see how they respond. It is an hour long test and the sad part is that she can’t be sedated while her breathing is compromised so she will be awake for the test. This will not happen any time very soon because she is neutropenic from her chemotherapy right now, but as soon as she recovers her immune system they will investigate further. I have mentioned Guillian Barre Syndrome after having done some research, but we’ll see what the tests show.

She still has not received the Vincristine and I’m not sure that she will get this drug again unless and until they pinpoint the source of her breathing issues. That makes me both nervous and relieved. I have a love/hate relationship with chemotherapy. I’m sure most people affected by cancer do.

She went for a “walk” in a walking device today that held her upright and she loved every minute of it. I know it felt good for her to be able to be up and moving albeit with a lot of help from a support device. Her morale is something to behold, she is so motivated and really wants to be up and moving, it’s precious to see her try so hard. Tonight as I was leaving the hospital she said for the first time “I want to go home.” She saw me leaving with the boys and wanted to come too, and it broke my heart. Now that she’s been home she knows where we’re going. I don’t know if home will happen any time soon since all of this breathing investigation is about to take place, but I am praying that we figure it out and move on quickly. I am ready to have her here again with us.

Please pray that we would be able to find the cause of her respiratory weakness, that her sodium would level out and for her strength.

~Amey

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.

9 responses »

  1. I love the new pictures! She looks sooo much better and more alert and glad she is motivated! I pray for her strength so she can come back home with the family soon. Hang in there. I know how hard this is on all of you but she’s a strong and brave little girl and you are a wonderful and loving mother. Your messages are always so inspiring, even the ups and downs that you’re going through. I thank you for always updating us so we can be a part of Phoebes journey.

  2. I loved seeing these pictures of her. She is such an inspiration to just keep on keeping on!! We will continue in our prayers and are lifting you all up daily! Thanks for posting!

  3. I love seeing her in the Lite Gait!!! I am a pediatric physical therapist and seeing her upright and walking is great for her and those muscles. Praying for her and you all daily to press on and continue to fight the good fight! She is amazing! Much love to you all!

  4. My prayers go out to this little fighter. She is a stronger little girl fighting a horrible thing, having to read that they want to do a ecg muscle test brought tears to my eyes and made my heart sink, I had it done whenever I was 17 and I would not wish it on anyone else. I pray that this little angel will not have to have it and keep on fighting Phoebe your are one strong little girl!!

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