It's been a while now since we found that Emma's tumor has grown back. I've been in a bad place. Lately, it's been really hard for me to function. I break down crying all the time. Chalk it up to stress as well as pregnancy hormones--whatever; I'm just a freakin' wreck!
I've been in denial, a little upset with God, wavering on my faith. Mike was like this for just a split second, but went to speak to Father Clint at our parish to "get right with God" and he's all better now. He has been urging me to go, but I'm not ready yet. I couldn't even sit at church during mass to pray for her without losing it and crying like a baby. It's been awful. I've had a hard time believing that Emma will be okay. I needed a boost of faith.
God answers prayers. He heard me calling. One random Monday in the month of October, my Mom decides that she wants to go to a "healing mass" at my Grandmother's church. Apparently, a "miracle priest" from Argentina was going to hold a mass for the sick. Ok, I'll buy it. What's the harm, right? Anything helps. Mike and I brought Emma and Hannah to the church and met my parents there. No one told me it was all in Spanish. Ok, that's fine. I'll just pray the whole time.
And so I did. As expected, I pretty much cried through the whole thing. Emma and Hannah were restless in the pews, jumping around and looking for pens and paper to keep them occupied. Mike just prayed in silence for the entire two hour service. After the first hour the priest started to walk around, holding up the chalice to bless the parishioners. He stopped at every pew. When he got to ours, he stopped for a longer period of time as though he knew that we needed him most. I looked into his eyes and began to cry and lowered my head in prayer. Mike was holding a sleeping Emma in his arms.
He said that when the priest was praying over him, he felt this wave of calm and peace surround him. Then he knew everything would be okay with Emma. I believe this is true. I felt that wave of peace as well, but much earlier in the service. In fact, God sent me a vision of the three of them--my kids--all grown as teenagers in a photograph. They were happy and healthy. And I knew this was the future.
Since that night, I've felt better, stronger. Good with God, unwavering in my faith. I feel at peace. I cry less now than I did before and I have pushed all bad thoughts out of my head. Sometimes a few will sneak in there, but I don't listen. I am positive and strong. I know Emma will survive this.
Another Opinion
A month or so after meeting with our team at Texas Children's Hospital, Mike and I asked for a second opinion on treatment options from different hospitals. Not like we didn't trust our team, on the contrary, we love our team so much. But somehow, I think Mike was searching for answers and looking in every possible place.
We asked TCH to send our information to St. Jude's Children's Research Hospital in Memphis, TN. There we sought the advice of Dr. Frederick Boop, a neurosurgeon, that has treated many pediatric Ependymoma patients. Interestingly enough, the recommendation came back that we should treat with chemotherapy first then surgically resect the tumor if chemo didn't get it all.
We also met with MD Anderson's Dr. Johannes Wolff. It was an odd meeting; he asked why the need for a second opinion if our team was a good and capable one? Um, okay. He suggested that we also consider chemotherapy. In fact, we should consider a very personalized form of chemo, "designer chemo."
I've been in denial, a little upset with God, wavering on my faith. Mike was like this for just a split second, but went to speak to Father Clint at our parish to "get right with God" and he's all better now. He has been urging me to go, but I'm not ready yet. I couldn't even sit at church during mass to pray for her without losing it and crying like a baby. It's been awful. I've had a hard time believing that Emma will be okay. I needed a boost of faith.
God answers prayers. He heard me calling. One random Monday in the month of October, my Mom decides that she wants to go to a "healing mass" at my Grandmother's church. Apparently, a "miracle priest" from Argentina was going to hold a mass for the sick. Ok, I'll buy it. What's the harm, right? Anything helps. Mike and I brought Emma and Hannah to the church and met my parents there. No one told me it was all in Spanish. Ok, that's fine. I'll just pray the whole time.
And so I did. As expected, I pretty much cried through the whole thing. Emma and Hannah were restless in the pews, jumping around and looking for pens and paper to keep them occupied. Mike just prayed in silence for the entire two hour service. After the first hour the priest started to walk around, holding up the chalice to bless the parishioners. He stopped at every pew. When he got to ours, he stopped for a longer period of time as though he knew that we needed him most. I looked into his eyes and began to cry and lowered my head in prayer. Mike was holding a sleeping Emma in his arms.
He said that when the priest was praying over him, he felt this wave of calm and peace surround him. Then he knew everything would be okay with Emma. I believe this is true. I felt that wave of peace as well, but much earlier in the service. In fact, God sent me a vision of the three of them--my kids--all grown as teenagers in a photograph. They were happy and healthy. And I knew this was the future.
Since that night, I've felt better, stronger. Good with God, unwavering in my faith. I feel at peace. I cry less now than I did before and I have pushed all bad thoughts out of my head. Sometimes a few will sneak in there, but I don't listen. I am positive and strong. I know Emma will survive this.
Another Opinion
A month or so after meeting with our team at Texas Children's Hospital, Mike and I asked for a second opinion on treatment options from different hospitals. Not like we didn't trust our team, on the contrary, we love our team so much. But somehow, I think Mike was searching for answers and looking in every possible place.
We asked TCH to send our information to St. Jude's Children's Research Hospital in Memphis, TN. There we sought the advice of Dr. Frederick Boop, a neurosurgeon, that has treated many pediatric Ependymoma patients. Interestingly enough, the recommendation came back that we should treat with chemotherapy first then surgically resect the tumor if chemo didn't get it all.
We also met with MD Anderson's Dr. Johannes Wolff. It was an odd meeting; he asked why the need for a second opinion if our team was a good and capable one? Um, okay. He suggested that we also consider chemotherapy. In fact, we should consider a very personalized form of chemo, "designer chemo."
There is a difference in opinion regarding a chemotherapy treatment plan between Texas Children's Hospital and MD Anderson. This is because each hospital follows different Ependymoma protocol; studies that were conducted on other patients, all with Ependymoma brain tumors. These are the numbers, the hard facts.
Dr. Su at TCH follows the studies that were done stateside at St. Jude's, while the MD Anderson bunch follow the CERN protocol. CERN is the Collaborative Ependymoma Research Network to which MDA is a member of. CERN protocol (correct me if I'm wrong) is based on research done in Europe which uses chemotherapies to treat Ependymoma tumors. According to the St. Jude's research, chemo doesn't do much for Ependymoma, which is why we never did it after the first surgery. The European studies believe that it does help. Who to believe?
Personally, I really don't want Emmy to do chemo. I wouldn't want her pumped full of terrible toxins and drugs that do awful things to her body, when the data shows that it won't do much for the tumor. I'm thinking quality of life here, right? But, it is not something we have crossed off the list, just yet.
There is something that Dr. Wolff recommends, which in a nutshell is "designer chemo," tailored to her specific tumor. It involves taking a look at her previous tumor, plus her current tumor and doing some mapping--looking for specific genetic markers and choosing the drugs that would best combat the makeup of this tumor.
It's an option, yes. We are somewhat inclined to just use chemo to shrink the tumor, as surgery would be so super tricky since the tumor is on the brainstem. So I think we might take the chemo over surgery for now. Let's see what the doctor's say. Our next MRI is scheduled for November 7th. Fingers crossed.
