Medicine Woes (Jan. 31st, 2012)

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2:42 pm:

Phoebe finished round 1 of her chemotherapy this morning! She had a restless night, lots of whimpering and feeling bad although she never seemed to be in extreme pain.

Our big issue is that Phoebe has learned all of our medicine giving tricks and has put her little foot down. Before we came to the hospital, Phoebe was a great medicine taker. Today she held her steroid medicine in her mouth for 2 hours and then slowly let it dribble out when no one was paying attention. Last night she started rejecting her Blue Bell ice cream thinking that we had put something in it although we had not. She will not drink for fear that meds are in her drink..*sigh…

So, we are trying the “Phoebe, you will take your meds in 5 minutes” approach and then squirting it in the back of her throat. We have tried this once so far, and she still spit a good bit out, so we’ll see how it goes.

This morning I gave her the ddavp shot for the first time. It went went and neither of us cried. I just finished a two hour meeting with the endocrine nurse and to be honest, it was overwhelming. I don’t think I really understood until now what Phoebe’s hormonal future and the necessary maintenance meds would look like. I have been so focused on her ddavp shots and regulating her sodium, when it seems the big deal is realy her inability to control her Cortisol levels.

I was taught how to give an intramuscular “emergency” shot for when she is not doing well, ie: cloudy, doesn’t recognize us, etc. The cause for this would be that a stressor has been introduced to her life, maybe a beloved pet dies or she has an injury like a broken bone and her body’s inability to control Cortisol levels compromises her. I will carry this shot around for the duration. It will be one of the things I check off my mental list before I leave the house each time. Whoever I leave Phoebe with must be able to administer this shot should the need arise. It holds her over until we can get her to the hospital.

When she is older she will have Human Growth Hormone injections to make her grow, and when it is time for puberty, that will be an intervention as well. When she is sick, I have to alter her standard every-day meds (which are many) based on if she is vomiting or not and re-calculate doses. Oy…I’m horrible at math!

The nurse talked about the importance of having people a hospital familiar with her situation if/when she has an emergency. It made me wonder how we can ever live away from here? So many concerns today…just feeling overhwelmed and needing prayer.

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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