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I am pretty sure most of anyone who knows me knows my wife, Elizabeth had brain surgery in August of 2013. The story, Elizabeth was diagnosed with a brain tumor, small tumor in 2010. In 2013 Elizabeth was pregnant with our second child and we were doing well. She was working full time and bringing home the bigger paycheck. In June she began to have migraine headaches, the OB doctors said this was normal in pregnancy. So we took this as prego problems. The headaches did not stop, she began to miss work and was fired from her job in late July, even though she was covered under the FMLA. Beginning of August my prego wife began having even more intense headaches and could not hold so much as water down without vomiting. So I took her to St. Elizabeth’s Hospital, to cut this short, 3 times over the course of 10 days. The did nothing, didn’t check her head, sent her away with Tylenol and fluids. Finally we took her to Memorial and they suggested we go to Barnes-Jewish in St. Louis. After a long night and Elizabeth’s memory beginning to fade she was diagnosed with a very large brain tumor that needed to be taken care of immediately.
Being pregnant the doctors were uncertain of what to do, the offered to monitor the baby and if there were any complications, they could stop the surgery and deliver the baby. She would have been 24 weeks and Elizabeth’s chances of survival were slim. The other option is no monitor, check the baby after. So I was left with this decision, I chose to not monitor the baby so they could concentrate on Elizabeth and get her taken care of. Rather than something happen and bring a baby how could have tremendous health issues into the world.
The next step, treatment 6 weeks of Chemo and 6 weeks or Radiation. But we still had this pesky baby to deal with. This was a very unique situation we had 4 different medical teams trying to figure out the best course for Elizabeth and the baby. Treatment needed to start 6 weeks after surgery. They gave us 8 and Helaina was born 32 weeks and she spent 5 weeks in the Special Care nursery, she is home and doing terrific now, she is 4 months old in 2 days. Elizabeth started treatment the following Monday and did it like a boss. She showed signs of fatigue, but powered through and got a nice break from Thanksgiving to New Years and she was feeling pretty good.
Elizabeth is at the moment doing Chemotherapy treatment to suppress or kill the tumor which is cancer. So my wife, 32 years old, 2 amazing children has brain cancer and is fighting for her life. This makes for a tough life and outlook for the future. We have tried to stay positive throughout this process and look for positive reinforcement. But it is tough when you look at the numbers, the survival rates are staggering and really scare the hell out of me. Again right now, she is doing Chemotherapy for 5 days a month, she has done her one shot of Radiation therapy in October and November along with the first of 12 rounds of chemo.
In December, right before Christmas we had a chance to see her first post Radiation/Chemo MRI and the treatment is working. Of course the doctor, Dr. Downer gave us the numbers, the survival numbers. We were still pretty happy with how the treatment is going and already knew what the survival rate is. We shortly after spoke with her surgeon and he marveled at how well she is doing and told up about current patients who are living and thriving with the Glioblastoma many years after surgery and treatment. She tells us, she has a lot going for her, good health and she is young, not to mention she is a fighter.
So we are on the second round of the 5 day chemo cycles and today is day 4 and it is rough. She has a tremendous headache and a lot of bad feelings in her stomach. She is napping right now and hopefully she will feel better when she wakes. These days scare me, I start to worry this thing is beginning to fight back. But of course it is also the Chemo doing its job. I just get nervous. Elizabeth has one more day then a break.
Now these are the survival rates for the Glioblastoma.
Prognosis is usually reported in years of “median survival.” Median survival is the time at which an equal number of patients do better and an equal number of patients do worse. With standard treatment, median survival for adults with an anaplastic astrocytoma is about two to three years. For adults with more aggressive glioblastoma, treated with concurrent temozolamide and radiation therapy, median survival is about 14.6 months and two-year survival is 30%. However, a 2009 study reported that almost 10% of patients with glioblastoma may live five years or longer.
http://www2.mdanderson.org/depts/Oncolog/articles/13/6-jun/6-13-1.html
Our doctor said between 2 and 5 years. I have read about cases of up to 12 years, but that is the longest. Reynolds would be 16 and Helaina would be 12. These numbers are 5 years old and medicine changes all the time. We have hopes the treatment will continue to work. But everyday having this knowledge is hard to live with. I could lose my wife in the near future and it scares the hell out of me. Being a single father of a 2 year old girl and 6 year old boy scares the hell out of me.
Sometimes I wonder if any of this has to do with her hormones changing and the hormones made the tumor grow, I am no doctor, but if that is the case no more babies for us.
No one can ever relate to what I go through, what we as a family go through on a daily basis and I hear things, “I know how you feel” all the damned time. Truth is, you don’t know. This is different for me, than her parents or extended family. Elizabeth and I have a great past and she is my future. But the future is so dark these days, between this medical madness, the mounting medical bills and living off my measly paycheck, it is hard and we see no end in site.
On the other side of the negative is some positive. Elizabeth’s tumor or cancer is reacting well to the treatment and she is fighting all the way. She is young and tells me her kids and myself are what gets her though everything. We also have a lot of people praying for her and Ma Benz, my best friends mom has been praying hard for us. Seems to be working.
This is the short version of everything, there are other variables that are included and so much more going on in our lives that this has effected. If you want to know the entire story, ask me.
The future is very scary, it could be a long future together or very short. I wrote this so people know what I deal with everyday. In short, my wife has a deadly brain tumor that does kill and fast. Everyday is a fight and we constantly worry about different outcomes. A life without Elizabeth would be terrible for me, Reynolds and Helaina. It is not fair.
rageofrayzor.wordpress.com 
My child has a grade 4 glioblastoma
look up novocure