This site was originally created to tell the journey Mara Adams, our 6-year-old daughter who was diagnosed on October 18, 2007 with a rare form of pediatric brain cancer known as DIPG (Diffuse Intrinsic Pontine Glioma). She passed into heaven’s welcome doors on September 22, 2008 after an 11-month fight with this devastating disease. Her family now blogs here in Mara’s honor as they attempt to live life without her in their physical presence.

Here’s how the journey began (November 2007):

Mara Allison Adams is our 6-year-old daughter. She has an 8-year-old brother, Max, a 4-year-old sister, Natalie, and a 1- year-old sister, Katrina. She just started kindergarten this year at Arthur Jacobsen Elementary School in Auburn, WA. We think she’s a pretty cute kid, but we’re a little biased.

We had started to notice some minor problems with Mara in September of 2007. She was drooling a bit at times, almost uncontrollably, and complained that her mouth hurt. Her speech was a little hard to understand at times (probably from the drooling) and she was a little more uncoordinated, falling down a lot more. She was also very emotional. We initially thought any or all of these were probably attributed to adjusting to a new schedule attending kindergarten, or maybe from cutting new molars. We finally agreed it made sense to have a doctor look at her to see if there was anything causing this. Our pediatrician didn’t find anything, but referred us to a neurologist in Tacoma.

On the 18th of October, Heather took her in for an appointment that morning in Tacoma. The neurologist (a wonderful Dr named Dr. Korol) suggested certain tests, an EEG and an MRI. The EEG came back fine. Mara had done great in the MRI and didn’t even need to be sedated. She was very cute, but definitely exhausted from a long day. The neurologist who was now on call at that hour came and pulled Heather and I into a separate room, while one of the nurses sat with Mara and colored with her. The neurologist proceeded to tell us that Mara has a brain stem glioma, which is a brain tumor in the brain stem. It is also referred to as a diffuse intrusive pons glioma or DIPG. It is considered cancerous and malignant. It is not operable because of its location. The common treatments are radiotherapy and sometimes chemotherapy, however these have not proven to cure the tumor, but rather to help delay the symptoms. The standard prognosis is not good. We were obviously devastated.

The succeeding days were met with numerous appointments with different oncologists to learn about the treatment options. We really liked all of the professionals we worked with in both Tacoma and Seattle. We have ultimately decided to participate in a clinical trial through Children’s Hospital in Seattle. The standard treatment would be radiation and then following that with some type of chemotherapy depending on how the radiation had worked. This clinical trial would combine the radiation treatments with a chemotherapy drug, capecitabine. The theory is that the chemotherapy drug will help make the radiation treatments more effective. Given the difficult prognosis with this type of brain tumor, there really aren’t a lot of treatment options, and none of which have been proven effective long term. So, this clinical trial at least offered us something that hasn’t been proven not to work.

Mara has begun radiation treatments at the University of Washington Medical Center through Dr. Douglas. She will have treatments every weekday for 6 weeks. She has done a great job at this, lying still in her radiation mask, which avoids the need to sedate her every day. This has been a small miracle in and of itself. The medical professionals at UW Medical Center have been outstanding and are taking great care of Mara. The chemotherapy drug is being administered through Dr. Geyer at Children’s Hospital. The medical professionals at his office have also been wonderful to work with. She will be on the chemotherapy drug (with a few scattered breaks) throughout the radiation treatment period and for an additional roughly 14 weeks (for a total of 20 weeks).

We have been overwhelmed by the outpouring of love and support from family, friends, coworkers, church members, members of the community, and many whom we don’t know. We certainly would not be able to deal with this situation without the love and prayers of so many. The odds are not in our favor, but we hope and pray for a miracle and trust that God’s Hand is in all things. Right now, Mara is doing pretty well. She is handling the treatments quite well, even though she is more tired and sluggish than usual. The fatigue is mainly the result of all of the drugs she is on, which are also impacting her appetite, she’s eating quite a bit now. She is attending her morning kindergarten class most of the time and now has an aid in the class to work specifically with her (thanks to the school and many friends for helping to get that set up). She still goes to dance class once a week and seems to enjoy many of the same activities she always has, including playing with her sisters and brother. Again, we cannot state enough how grateful we are for all of the phone calls, emails, cards, gifts, visits, etc. that we have received. We have been amazed by the generosity and kindness of so many. We hope to use this website to keep people aware of what is going on so we will try and post updates as appropriate. Thanks again for your love and concern.