Back to ICU: Phoebe Fights (Feb. 23rd, 2012)

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5:15 am:

I am awake in the wee small hours watching this sweet girl who continues to keep the doctors (and her Mama) on their toes with her ever changing potassium, magnesium and now ammonia levels in the blood. Please pray for Phoebe and her renal issues, they have talked about a transfer back to ICU if things don’t improve. They are drawing labs consistently to keep a close eye on all of her blood levels. It seems that she keeps throwing them curve balls, when one level starts to improve, another level drops or soars out of range. Her electrolytes need balance and her neurological state needs improvement. Thank you all for praying!

11:24 am:

We are being moved to ICU. Her electrolyte issues are more than they can keep up with on the Oncology floor. Waiting on MRI until the metabolic issues are in a more stable place. PICC line being placed when we get to ICU so that she can receive more fluids as needed since she is being heavily supplemented. Kidney damage confirmed, not sure how long it will take to reverse or IF it will reverse. Chemo drug Cisplatin is the damaging agent for kidneys as well as Methotrexate which she received both of this past week on round 2 of chemo. She will continue to get Cisplatin, most likely continue to see kidney damage, but killing the malignancy is more important….so much to take in…

8:06 pm:

The (tentative) diagnosis is that she has a raging infection and is septic. It is only “tentative” because she has not had a blood culture grow anything yet. But, the kidney failure, the metabolic issues, the labored breathing and fever and sky-rocketing heart rate and low blood pressure are all infection/sepsis indicators. She is not very lucid and her oncologist used the word “delirium” to describe her right now. She is ‘there’ and she responds to us when we make her, otherwise she sleeps in a very heavy sleep with labored breathing.

She is getting Magnesium and Potassium and free water and her TPN nutritional IV to help balance out her electrolytes. She is getting phosphate for her kidney function and of course a couple different antibiotics. Her fever is 103.1 right now and her heart rate is hitting the 200’s. Her blood counts are bottomed out, she is neutropenic. She has nothing to fight with right now physically, this is where we fight for her. And you have been. We see thousands of you..and we are built up and strengthened. We feel your love, your prayers supernaturally holding us up.

Several times today I thought “why am I okay?” It is truly the peace of God that passes understanding, there is no other explanation.

We met with Dr. Bowers tonight and felt so much better after talking with him. Neutropenic Sepsis is nasty. The good thing is, when her immune system comes ROARING back in the next 4 or 5 days, she will have what she needs to fight this. Until then, we stand in the gap for her and pray her little body through. I know God is there with her in her ‘delirium’, giving her courage and comforting her and that is what I am trying to meditate on. She is not alone in this even when I feel like I can do nothing for her.

Tomorrow she will have an MRI so they can get a more detailed picture of her brain to look for new tumor growth (although they detected none on the less detailed CT scan) and Methotrexate toxicity to see if this could be a cause for her impaired lucidity. He expects that her lack of  lucidity has to do with the fact that her body is overcome with a nasty infection and it has no tools to fight right now. This taxes her body incredibly and upsets the balance of everything. He also assured us that this IS the “I want to quit” part of chemo that will be part of this first 12 weeks. It is always reassuring to hear him say that.
Some have asked about the difference in the first 12 weeks of Phoebe’s protocol and the rest of the 40 weeks. I will write about that more in detail when I fully understand how the protocol works and when I am not so worn out from the events of the day.

Phoebe needs your constant prayers especially these next 4 days while her body is neutropenic and raging with infection. Thank you all for the love and support you have shown us!

 

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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