I know I haven't made much effort to blog about anything lately, and I wish I had nothing important to blog about. But truth is, I have lots to tell, but nothing to say.
CliffsNotes
Remember those CliffsNotes in school, a long time ago? Are those still around? They basically took whatever literature you were supposed to read in English class and gave you just the important parts, the blow by blow, if you will. I wish I had that for our life now. Wait, actually, I do...its called Facebook. Honestly, I do most of my updating on Facebook. It allows me to just post the quick updates and photos and lets you know just how she's doing. Keeps me from going off the deep end, most of the time. Plus I'm so tired, that my writing is terrible and makes no sense lately.
In case you're not on Facebook, here's recap. Emma had surgery to remove a metastatic brain tumor in February, 2011. As always, she did exceptional in recovery. They placed a temporary shunt that helped to drain out her excess brain fluid, which meant she was attached to poles again--something she particularly hates--it prevents her from running around freely in her hospital room. We were back home after a week of hanging out in the biggest room on the 10th floor (party room); ecstatic to leave.
Sadly, Spring Break was not in Padre or Cozumel this year, but at Methodist Hospital where Emma began a treatment of 17 doses of focal radiation to the brain and spine in mid-March. Daily sedation early in the morning; not your typical vacation from school. She got through it with minor pain, minor discomfort, minor hair loss, full of smiles and grace throughout. We finished our last treatment on April 6th. She rang that bell so many times, you would've thought there was a fire somewhere.
We were slated to start chemotherapy by the end of April, but things didn't go as planned. Just two weeks after finishing radiation, Emma was back in the emergency center again. She had been vomiting, complaining of headaches, mild lethargy, and the fluid-filled, blister-like sac on her incision site was back and very hard; all signs that she was having excess pressure in her brain again. I tried to hold off as much as I could--almost a week, just waiting for things to calm down, her body to normalize, but to no avail. We were admitted immediately for overnight observation and told that she may have to have surgery to install a VP shunt (really good graphic on that link there). The next day the blister burst and all bets were off. Shunt surgery it is. They also decided to do an MRI as well.
Emma is amazing. Fantastic and awesome, that kid. She was perfect through surgery and recovery, though the pain was so much worse than the last 5 brain surgeries she previously had. This time, there was an incision in her abdomen that was causing her lots of pain. But she bounced back, though not as quickly as the other surgeries.
The shocker was the MRI results. Doctors found another tumor in her brain. Same location. The damned thing was there again, the cancer returned.
Extremely difficult news for all of us, which explains my lack of blogging. I hate reliving things. Hate it. Hate having to recall the moment, remember the medical jargon, relive the pain. Hate having to talk about it over and over again, as if every repeated word would somehow cure her. It won't. If it could, I'd scream it from mountaintops and never stop my endless babble. And it certainly doesn't help the pain either. But you get used to it. You get used to repeating the words "the cancer has returned, the tumor is back," again.
Anyhow, I digress. Sorry about that. I am at a much better place then I was a few weeks ago. I have to admit I hadn't been in the right frame of mind. It keeps getting harder to get back on the horse, when you just keep getting knocked off. But I'm okay now; we're okay. We keep on hoping and fighting. She keeps on fighting.
So the plan is another surgery on June 13th to remove as much tumor as possible. This is so the chemo can have a better chance at working. As it stands now, there is no cure for Ependymoma brain cancer. Doctors will perform surgery, radiation and even chemotherapy as part of the plan, but nothing has ever been shown to be 100% curative. Chemotherapy has about a 20% chance of working in Emma's case. Radiation didn't work, surgery can only get you so far. So we leave it up to the chemo to kill this cancer. And we leave it up to God to heal our daughter.
Spring Break
Our "real" Spring Break was this past weekend at the beach. Spring Break in May. It was cold and windy and perfectly lovely. It was the short reprieve that we needed from what is to come. Here are a few photos for your viewing pleasure (all shot with a point-and-shoot in case you wanted to know).
CliffsNotes
Remember those CliffsNotes in school, a long time ago? Are those still around? They basically took whatever literature you were supposed to read in English class and gave you just the important parts, the blow by blow, if you will. I wish I had that for our life now. Wait, actually, I do...its called Facebook. Honestly, I do most of my updating on Facebook. It allows me to just post the quick updates and photos and lets you know just how she's doing. Keeps me from going off the deep end, most of the time. Plus I'm so tired, that my writing is terrible and makes no sense lately.
In case you're not on Facebook, here's recap. Emma had surgery to remove a metastatic brain tumor in February, 2011. As always, she did exceptional in recovery. They placed a temporary shunt that helped to drain out her excess brain fluid, which meant she was attached to poles again--something she particularly hates--it prevents her from running around freely in her hospital room. We were back home after a week of hanging out in the biggest room on the 10th floor (party room); ecstatic to leave.
Sadly, Spring Break was not in Padre or Cozumel this year, but at Methodist Hospital where Emma began a treatment of 17 doses of focal radiation to the brain and spine in mid-March. Daily sedation early in the morning; not your typical vacation from school. She got through it with minor pain, minor discomfort, minor hair loss, full of smiles and grace throughout. We finished our last treatment on April 6th. She rang that bell so many times, you would've thought there was a fire somewhere.
We were slated to start chemotherapy by the end of April, but things didn't go as planned. Just two weeks after finishing radiation, Emma was back in the emergency center again. She had been vomiting, complaining of headaches, mild lethargy, and the fluid-filled, blister-like sac on her incision site was back and very hard; all signs that she was having excess pressure in her brain again. I tried to hold off as much as I could--almost a week, just waiting for things to calm down, her body to normalize, but to no avail. We were admitted immediately for overnight observation and told that she may have to have surgery to install a VP shunt (really good graphic on that link there). The next day the blister burst and all bets were off. Shunt surgery it is. They also decided to do an MRI as well.
Emma is amazing. Fantastic and awesome, that kid. She was perfect through surgery and recovery, though the pain was so much worse than the last 5 brain surgeries she previously had. This time, there was an incision in her abdomen that was causing her lots of pain. But she bounced back, though not as quickly as the other surgeries.
The shocker was the MRI results. Doctors found another tumor in her brain. Same location. The damned thing was there again, the cancer returned.
Extremely difficult news for all of us, which explains my lack of blogging. I hate reliving things. Hate it. Hate having to recall the moment, remember the medical jargon, relive the pain. Hate having to talk about it over and over again, as if every repeated word would somehow cure her. It won't. If it could, I'd scream it from mountaintops and never stop my endless babble. And it certainly doesn't help the pain either. But you get used to it. You get used to repeating the words "the cancer has returned, the tumor is back," again.
Anyhow, I digress. Sorry about that. I am at a much better place then I was a few weeks ago. I have to admit I hadn't been in the right frame of mind. It keeps getting harder to get back on the horse, when you just keep getting knocked off. But I'm okay now; we're okay. We keep on hoping and fighting. She keeps on fighting.
So the plan is another surgery on June 13th to remove as much tumor as possible. This is so the chemo can have a better chance at working. As it stands now, there is no cure for Ependymoma brain cancer. Doctors will perform surgery, radiation and even chemotherapy as part of the plan, but nothing has ever been shown to be 100% curative. Chemotherapy has about a 20% chance of working in Emma's case. Radiation didn't work, surgery can only get you so far. So we leave it up to the chemo to kill this cancer. And we leave it up to God to heal our daughter.
Spring Break
Our "real" Spring Break was this past weekend at the beach. Spring Break in May. It was cold and windy and perfectly lovely. It was the short reprieve that we needed from what is to come. Here are a few photos for your viewing pleasure (all shot with a point-and-shoot in case you wanted to know).
Please continue to pray for Emma.
