Wednesday, January 6, 2010

Iowa City Neurosurgeon Appointment

Monday, December 28, 2009 -

Today we (Ed, myself, Oliver, Jared - Ed's brother, Emily - Sister in law, Natalie - niece, Addison - niece -- they were visiting from California after they had heard the news...) met my mom and two brothers, Bryan and Chad down in Iowa City at the University of Iowa Hospital and Clinics (UIHC) to meet with Dr. Menezes, a neurosurgeon. I had heard from a friend that he is one of the best in the nation and so I was hopeful after we had talked. Although I expected more of the same difficult news, it still didn't soften the blow to hear it again and to hear it from a specialist.

A nurse had checked Oliver out for awhile before the doctor had come in. He was looking at the MRI that we had brought down from Waterloo. The door was open and the first thing I noticed when I saw the doctor coming into the room was his eyes. It had looked like he'd been crying. A pain just shot through my heart, not wanting to hear what he had to tell us. Before he talked with Ed and I, he introduced himself to Oliver and did many of the same things with Ollie asking him to perform several of the same tasks. When he was finished he asked Oliver to leave the room so he could talk with Ed, myself, my oldest brother, Bryan and my mom.

He showed us the MRI results and explained that Ollie has Diffuse Pontine Glioma or Pediatric Brainstem Cancer. He showed us several scans of Ollie's brain and explained the significance of each one. The most devastating news was that it is inoperable because of where it is located and because it is 'diffuse' meaning that it's all over in the brain and impossible to be able to operate and remove it. His brain stem is twice the size it should be which is causing various problems, such as double vision which was the reason for alarm in the first place. He said that it was difficult because the brain stem is where all the vital functions take place. He told us that without treatment of any kind he would be gone in three months time. That just took my breath away. With treatment 9 - 15 months was more likely. Although this is what we had read online and what Ed confirmed with our pediatrician on the phone, it was still shocking to hear and unbelieveable. NOTHING can prepare you to hear those words. Absolutely NOTHING. It's like someone just knocked the wind out of me. I kept trying to repeat "You have to be strong. You have to be strong" over and over in my head, but I just burst out in tears.

Treatment options are primarily radiation in hopes to shrink the tumor and relieve pressure of brain fluid and chemotherapy. Many articles and research has shown that there isn't much benefit to having chemo at this time as it doesn't increase the survival rate and it decreases the quality of life as it makes them so sick. Oliver's health is already compromised as he has asthma and allergies that he deals with on a daily basis. We can only do what we can and pray for guidance to make the best choices we can for Oliver and continue to fast and pray for healing to come and for the tumor to shrink.

Ed and I were concerned about how to approach the topic of cancer and so we asked his professional opinion. We asked him point blank what we should tell him. He said don't say the "c-word" (cancer) or the "t-word" (tumor) as they immediately cause fear. He told us to tell him that he's sick and that he needs treatment (radiation) and possibly medicine (chemotherapy) in order to help him get better. Since he is the specialist and deals with having to break this kind of news to people, including parents, we figured we would take his advice and tread carefully on the subject. He told us to be honest with him if he asks us questions, but to not offer too much unnecessarily causing anxiety or fear. He said that we can do all we can for him, but ultimately it's in someone else's hands... as we very much agree with.

We then were introduced to Dr. Buatti, the radiation specialist, and talked with him about his treatments and set up a time to meet with him again the following day as well as with the Pediatric Oncologist to discuss what he thought about chemotherapy for Oliver. The doctors left and I just broke down crying again and had to compose myself before going out to the waiting room to see Oliver. I just couldn't believe how hard it would be to work there and to have to give people, other parents this type of devastating news. *sigh*

Oliver was crying in the waiting room and it was so sweet as I watched his five year old cousin, Natalie, walk over to him and wipe off a tear with her winter coat sleeve. Those moments just melt my heart as I see the love and tenderness that children show towards one another. It was very helpful to have family there with us for support. I am grateful for their love and I hope they can feel my love for them as well as Oliver's love for them. I am blessed to know that our relationships that we nurture here in this life will continue as we pass on to the next life. That comforts my heart so much as I think of the future.

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