Many have been asking for an update on Christine's brain tumor. Since we got back from NIH, I have been inundated with things to get ready for registration and then first weeks of school at OHA is always hectic. My sister Shelly, her husband Kevin and their family as well as my Dad have all moved into their new “dorm” home and are in the full swing of a new school year. With everything going on, none of us have had much time to write an update--so when my sister Carol came to visit last weekend, she wrote this one, which we have adapted. Some of you may have already received much of this information from her e-mail but I will send it again so as not to miss anyone on my list.
Christine is doing amazingly well right now, and we are praising the Lord. She is looking very maternal, and is showing her pregnancy of five months along just beautifully. We will have a little girl sometime in mid-December, the Lord willing. Since weaning off the Keppra (an anti-seizure medication) a few weeks ago, Christine is feeling 100% better. No more dizziness, fatigue, insomnia, etc. She says, besides the normal fatigue of being pregnant and caring for a toddler, she is almost feeling nearly back to normal. Her speech is also greatly improved, but at times we can tell it's not quite normal yet. But, overall, she is looking well and feeling well, and able to do most things. She has a big scar across the top of her head where most likely the hair won't regrow. But, she is able to pull her hair back and it covers very well.
Our last visit to the NIH on August 17 revealed some good news and some bad news. I'll share the good news first. The MRI showed no growth in the remaining portion of the tumor, and in fact it was slightly smaller, which was expected since the last MRI was immediately after surgery and there was some swelling. The neuro oncologist who is top in his field and has written textbooks on brain tumors said that it appeared that the surgery had been successful in removing 95-99% of the tumor. That's really good! We understood after surgery that they had removed only about 80% of the tumor. The other positive fact is that Christine's tumor had the genetic marker called a 1p/19q co-deletion. Those patients who have this marker tend to have a better prognosis in general. This is in part because it seems these tumors are more sensitive to the chemotherapy agent. The plan is for her to have monthly MRIs until birth to monitor the tumor and not to begin any treatment until after the baby is delivered. They said that if she wasn't pregnant, they would want her to start on treatment right away. We are thankful that she is pregnant, because it gives us more time to research our options, contact other people, and time to process all of this. We also believe that God has a special plan for this little one through all of this.
Now for the not so good news. They said that the vast majority of the tumor was an oligodendroglioma grade 2 but that the few spots with greater cellular density had all the characteristics oligodendroglioma grade 3 tumor cells. As such the entire tumor has been up-graded to an "anaplastic oligodendroglioma." This means it is classified as a more malignant (cancerous), faster growing and more invasive tumor. These cells tend to infiltrate the brain and migrate and grow which is why the whole tumor must be upgraded. (Even if they had removed 100% of the tumor, some cells would still would be there because it infiltrates into the rest of the brain.) We were hoping the tumor would have been classified a grade 2 because they don't recommended any treatment for these but just to monitor them over time.
The doctor encouraged Christine to do both chemotherapy and radiation. They are recommending an oral chemotherapy drug called Temodor (temozolomide) which is typically taken daily for five days a month for one year, sometimes up to two years. In appears to be better tolerated by most people and have fewer side effects than most of the chemotherapy drugs. People who are taking it generally don't lose their hair or get really sick however it does have some common side effects (fatigue, nausea, etc.) and a small percentage of people do not tolerate it very well at all. It has only been around since around 2000 so its use with this type of brain tumor doesn’t have long term data on it but many patients who have been treated for this type of tumor are still alive 10+ years later. We will probably not do radiation at this point.
When Christine asked the doctor what her prognosis would be if we chose not to do chemotherapy and radiation, he told us that the tumor would most likely take her life within 3-5 years. Of course, we are doing all we can naturally to fight cancer. Christine is not eating any refined sugar (and eating lots of foods rich in anti-oxidants), and is reading a lot (as much as possible with a toddler and still some work for school), researching, and trying to learn all the ways to fight it naturally.
We are thankful for the good news and trusting the Lord through the bad. He has lead so far and we know he continues to lead each day. Our summer was consumed with the brain tumor but what a blessing it was that all this happened during the summer when I could be there 100% for Christine and then take care of Elliot when we got home and she was recovering. But how providential it is that she has recovered sufficiently just in time for me to be able to return to my full time responsibilities at OHA for a new school year. I know we must live one day at a time but the evidences of his guidance through all of this gives us great solace amidst the uncertainty.
Please know how much your love, support, and prayers have meant to us. Please continue to pray! God’s will be done.
With gratitude, trusting in His promises,