Taking One Step At A Time
Brecken | Low-grade Astrocytoma Glioma – Hypothalamic Region | Diagnosed at Age 5
Written by Patti, Brecken’s Mom
At the end of March, 2015, Brecken began having some headaches and vomiting. As a pediatric nurse, I knew that it was something we needed to get him checked out. His headaches continued for two days in a row, but got better after he vomited. On April 1 (worst April Fools’ Day ever), we went to a children’s hospital to have a CT of his head. It was spring break so all of my family, including my husband and older son, Grant, came to the appointment and thought we would have a picnic lunch after the scan. I really thought the scan would come back fine. Never did I imagine that the doctor would call us just as we were exiting the parking garage saying that they saw a mass and he needed to get a MRI later that day. Needless to say, we were crushed. We had hours to waste before the MRI, so we decided to let the kids have fun and we went to ride go-carts. The kids had a great time, but we were worrying the whole time. After the MRI, we were admitted and had some tests run. The first neurosurgeon we saw wanted us to schedule surgery right away and remove as much as possible.
Seeking Multiple Opinions
Since brain surgery is a big deal, we wanted to make sure we were doing the right thing for Brecken so we decided to take some time and get some other opinions. We sent Brecken’s scans and information to a few of the top children’s hospitals in the U.S. We also saw a different neurosurgeon who worked in the hospital I work at, who recommended that we just get a biopsy (a sample of tissue taken from the body to examine it more closely). He felt that there was too much good brain tissue intertwined with the tumor and that removing it could be devastating to Brecken. We really liked this neurosurgeon and trusted him and decided to go ahead with the biopsy. We got the biopsy done and it seemed to take forever to get answers, but they finally called it a low-grade glioma – astrocytoma. Getting a brain tumor diagnosis was devastating to us. My mind automatically went to all the wrong places. Brecken was diagnosed on a Wednesday and we got family pictures taken that Saturday. We didn’t know how our lives were about to change and decided that we needed to have family pictures.
Brecken had a few surgical complications from the biopsy. He developed scar tissue in the tract from the biopsy and that caused fluid to back up and increase pressure. The surgeon went back in to break up the scar tissue and open some channels for the fluid to drain properly. Then the incision was leaking and they had to close it up with heavy duty sutures.
Since the tumor could not be removed, our oncologist thought that we would do a year of chemotherapy. One month he gets an IV infusion of Vincristine and Carboplatin in his port. That alternates every other month with five days of oral Temodar. Brecken’s MRI in October showed that the tumor had decreased in size and the latest MRI was stable. We have two more rounds left of chemo and he will continue to have MRI’s every three months for a year and then every six months for a year and then yearly, as long as everything is fine.
The Reality of Living with a Brain Tumor
Brecken has been great through all of this. He started kindergarten this year, on top of all of this. He has some behavior problems at times, but he had those before he was diagnosed. It’s hard to say if the behavior is from the tumor, being six, or being exhausted from the chemotherapy. He enjoys entertaining the nurses at his appointments and they enjoy seeing him. As a nurse, I have seen things. I assumed that Brecken would be sick and have a lot of inpatient stays, that he would require a g-tube and lose all of his hair. In reality, he has been really healthy and hasn’t required an inpatient stay since our surgical complications in July. He continues to eat by mouth and didn’t lose his hair, although it has thinned.
My husband and I are coping with the diagnosis much better now than we were in the beginning. Brecken is doing so well, that it’s sometimes easy to forget that he is “sick”. There was a period of time that I was scared to be alone with Brecken. I’m not sure what I thought would happen, but the surgeon finally told me to treat him just like I would have before the diagnosis. I have signed up for the bone marrow registry. I know that this won’t help Brecken, but as a parent, I hope that a stranger would be willing to help us if there was something to be done.
As a caregiver, you have to take care of yourself too. It’s ok to ask for help. Everyone wants to do something for you, so let them. I asked a friend to attend one of the appointments that my husband was unable to attend. It’s nice to have the support and an extra set of ears. Let people bring you meals, clean your house or do your laundry. My doctor prescribed some anxiety medicine for me and it helped a lot – a brain tumor diagnosis is a big thing to be going through and it’s ok if you need some medicine to help. I no longer worry about every little thing.
We have met a lot of great families through all of this. I had no idea that there were so many people with brain tumors. I would encourage others to start a blog or Caring Bridge page. Writing is therapeutic and it is a good way to update everyone. I also joined a local Facebook page for families with pediatric cancer. It’s a good way to connect with other families and ask questions.
My advice to others… don’t assume the worst and take one step at a time.