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.
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.
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!
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!
O wow. You both teach me each day! Thank you.