March 21, 2014

Tuesday, March 18 we met with all of Jacob’s doctors (neuroradiologist, neurooncologist, neurosurgeon) and finalized our decisions about his treatment regimen. The tumor is out, and now it is time to try to kill any remaining cancer cells. We decided to do a one time GammaKnife radiation therapy to the tumor cavity and margins rather than a six-week wide field radiation regimen. The GammaKnife procedure is happening today, March 21.

Chemotherapy started at the time of surgery (the surgeon implanted wafers in the tumor cavity) but begins in earnest tonight with temozolomide, which is the standard oral chemotherapy for these types of tumors.  Supposedly this chemotherapy is “well tolerated.”  He doesn’t have to do any ports or infused chemo and won’t lose his hair.  He’ll just take pills every night for 6 weeks that happen to come in a biohazard bag when you pick them up from the pharmacy. 

Jake has also decided to go on a ketogenic diet under the supervision of the oncology dietician.  They are doing a study with that diet here that has shown some promise in the laboratory.  He’s not officially on the study because he is doing an alternative radiation therapy.  The idea of the study is that brain cells feed off of glucose, so you starve the brain of glucose, by feeding your body proteins and no carbohydrates, to weaken the cells during the 6 weeks of treatment to make the medications and radiation more effective in killing the cancer. The rest of the body knows how to convert fats and proteins into energy, but the cancer cells in the brain aren’t as effective in making the conversion and are weakened as they receive little to no energy and killed through the medication and radiation.

After this first round of treatment he will have a month off to recover.  At the end of that month, he will continue to take the oral chemo pill, for five consecutive days at the beginning of each month for a year. Jake will also have MRI scans to watch for a recurrence. He will have an MRI after the initial treatments, and then every two months after that. Jake plans to return to work at the end of the month.   

These last two months have been the most difficult of our lives. We have felt helpless as we’ve grappled with his diagnosis and all that thoughts, feelings, and emotions that accompany it. We have had no control over our life, and no idea of what would be happening from one day to the next.  

But with the surgery over and the treatments underway we feel like we can breathe. We feel like there is a plan in place, we have some say in that plan, and we know what is on tap for the coming week.  We feel like we are getting our life back.

A friend with a metastatic breast cancer told us that with cancer you develop a “new normal.” I think that phrase is fitting, and something that we are starting to experience. After the last 8 weeks of crazy ups and down and unpredictability, all we want is to return to regular life. To have Jake go to work. To have our girls go to school, piano lessons, and play with friends. To clean our house, play outside, and attend to church on the weekends. To get back into the comfort of a routine. 

Again, we cannot adequately express our gratitude for the support, strength, prayers, and love that we’ve felt from all of you. It has carried us through the days and weeks when we couldn’t cope on our own. Phase one of this experience is coming to a close. Jake describes this experience as a marathon, and we’ve heard the starting gun and crossed the line of no return. 

Picture taken March 19, 2014

Now there is a race to be run and as a family we are moving forward. We hope that Jake never has a recurrence (although recurrences are almost inevitable with this type of tumor and have their own treatment options) but want to know that when he does we have done everything in our power, trusting in the will of God.  We echo Paul’s statement in Hebrews 12: 1-2 and aspire to “run with patience, the race that is set before us, looking unto Jesus the author and finisher of our faith.”