No Ommaya, Mixed feelings

Standard

An Ommaya Reservoir is a port placed in the brain ventricle for the delivery of chemotherapy to the CSF fluid. In Phoebe’s case, the reservoir would allow chemotherapy to be delivered directly to her tumor site where any lingering cancer cells might be. In an earlier post I mentioned our discomfort with the idea of delivering Methotrexate directly to Phoebe’s brain because it was suspected that this drug may have been responsible for the blisters and swelling on Phoebe’s hands and feet as well as the somnolence she experienced the days following her last spinal injection.

We were told to consider the idea this week because it is part of the protocol Phoebe is on and is an extra punch to those nasty cancer cells, but that is wasn’t totally out of the question to skip it and continue to give Phoebe her intrathecal chemotherapy through lumbar puncture. Today, Phoebe’s neurosurgeon and oncologist met to look at her MRI scan and discuss the placement of the Ommaya Reservoir and it was decided that her ventricles are too small for proper placement.

Part of me feels glad and relieved, and sure that God knows she doesn’t need it and that is she getting to pass on a procedure that might do more harm than good. The other part of me feels nervous that she is missing out on an important part of this protocol. There is a sense of peace though, in having the decision made for us and not having to go back and second guess if we are doing the right thing. So, no Ommaya for Phoebe. I can’t say that I was excited about the prospect of another brain procedure, no matter how small. I’m glad Phoebe is getting a break.

Today was eventful, with some more dehydration. I have to say, I appreciate that I feel “heard” by the nurses and doctors on the HEMONC floor because as soon as I told them I was seeing Phoebe demonstrate symptoms of dehydration, they gave her fluids and consulted with Endocrine to get more fluids in her feeding regimen. Later in the day when I noticed that her resting heart rate was still high and told them that I thought she was still dehydrated, they agreed and gave her more fluids again. So NICE to be able to work together to see Phoebe feel better.

We didn’t end up having a jewelry party last night after all, she was having a rough night and struggling with withdrawals, agitation, insomnia and dehydration. Her breathing still needs to improve quite a bit before we can consider going home and her dehydration and fluid balance need to be stable as well. In spite of her sleepiness today, she was a champ in her PT, OT, and Speech therapy. She drank from a straw and swallowed some pudding and is on her way to being an eating, drinking person again very soon! Her little legs are like sticks and are so lacking in strength, but she still scoots forward on that chair and leans toward me to try to stand on her legs. Her motivation to work hard is so beautiful. She doesn’t whine or complain or give up…she pushes through even though it’s uncomfortable. She impresses me and she teaches me. If she’s not losing heart, how can I? She is so brave and I am so proud of her.

Tonight I sleep at home and Grammy pulls the night shift. I wish I had some pictures from today to share, maybe next time. Thank you all for praying for the Phoebster. She is an amazing girl and I am so proud to be her Mama.

~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.

4 responses »

  1. Oh Amey, this is all so hard! So thankful that sweet Phoebe girl is fighting and working so hard. She is such a light and example. God loves you all so much. Praying that he continues to make his presence known to you and carry each of you! Love to you all.

  2. You won´t loose heart – never – God has not given you a spirit of fear !!!
    Phoebster is like you and she´s fighting like you and your family is. God has it´s plan and if it is on we will see Phoebe one day going home and being healed!
    Our little Miss miracle is great!! Go on for training for the Olympics again!!! And Lulu said if she could she would send you her grandma´s applesouce. It´s made from her appletrees and we all are addicted to it!
    Phoebe soon it´s time to have a french fries party again! So get strong and ready to dance!
    LOL Chris

  3. Yes, that is God saying she doesn’t need that drug on her brain! Praise the Lord!
    With her courage and will to fight, none of us can loose heart! Praise the Lord!

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