Chemo Day 1 (Jan. 27th, 2012)

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9:12 pm:

Phoebe was in a great mood this morning when I arrived. I found her singing to her Daddy from her bed as he was lying down on the couch in the room. He was singing back to her and they had a happy banter going back and forth. It was a good way to start the day.

At around 8:30 they walked us over to the Oncology clinic and Phoebe had a lumbar puncture where they removed some of the cerebro-spinal fluid and replaced it with chemotherapy medicines. These medicines will travel through her CS fluid in the spine and up around into her brain killing cancer cells. Phoebe was fortunate to not have any tumors on her spine as some AT/RT patients do.

Phoebe woke up about 30 minutes after her procedure and was a little groggy, but otherwise feeling good. She ate some lunch and drank some milk and had her first big vomit. She seemed fine afterward but a little more fussy than usual.

We had a long discussion with one of Phoebe’s Oncologists today where she detailed for us the treatment plan and the specific side effects of the chemo drugs Phoebe will be getting in the next four days. She also shared with us the probability that we will not be going home any time soon. In other words, as an AT/RT patient who also has Diabetes Insipidus and has to be monitored closely, Phoebe is not really on the “stay in-patient 4 days, go home for 4 days plan”. We will most likely be in-patient for some time with no definitive date for going home during these first several weeks. That was a bummer to hear.

Phoebe’s sodium levels have been great the past several days and they are very pleased with that. BUT, when Phoebe receives chemotherapy she has a high IV fluid intake which greatly effects her sodium levels. So, she has a catheter again and constant blood draws and sodium checks to make sure she stays in balance in spite of the fluid increase. Her ddavp dose will fluctuate back and forth between chemo weeks and non chemo weeks and will need to be monitored all the while. Obviously we can’t do that at home so she will not go home until they are confident that she is stable enough to be on a regulated two-a-day shot dose that does not need monitoring.

I am finding that plans are hard to make, dates are hard to nail down and nothing is set in stone when it comes to hospital/cancer treatment life. Each day has it’s own unknown variables, Phoebe responds well to some things and not so well to others. There is no “usually” in this situation. She already has an extremely rare cancer and has responded in an extremely rare manner to the DI in regards to her wild pendulum swings with sodium. Who knows what other rare situations will arise. But “typically” and “usually” don’t seem to apply so far which is difficult because you never know what to expect.

At 7:30 pm she was given Zofran for anti-nausea and that was followed at 8pm by Cisplatin which is an 8 hour drip. This drug can cause hearing loss given over time and that is something to be on prayer alert about. It is also one of the hard-hitters when it comes to nausea. Phoebe will have audiology tests scheduled into her regimen to detect hearing loss.

There is a drug called Amophostine that has been shown to guard against some hearing loss in clinical studies and we are considering that for her 2nd round. Unfortunately the decision is not an easy one because Amophostine is described as a horrible, “nasty’ drug that causes severe nausea/vomiting and stomach cramping. It might be worth it in the long run, but making the decision to make her feel  even more horrible is so difficult any way you look at it. It feels so weighty to be charged with decisions like this. Please pray for us as we wrestle with these decisions. Also, I just got a report that her sodium jumped from 144 to 161. Please pray as we are back again on the sodium roller coaster now that the chemo has started and new variables have been introduced. Here we go…

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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