Friday, February 27, 2009

Feb 27th

Today I have been home with the boys for the entire day and they have been my motivation for everything and anything that seems difficult and/or challenging. They have been working with me to gather items for our yard sale and have been very generous in giving up books and toys to sell in the name of charity. They have been enthusiastic about the work that needs to be done prior to the sale. Bryce is ready to hit the streets to gather items to raffle off. They have been cooperative and their attitudes remind me that the effort put into our projects is worth it.
We have planned a trip to Disney and are excited about the chance to get away and have fun together. When scheduling the trip we were asked if we were celebrating any special occasions and initially we said no. When asked again - I responded that we were celebrating 'Life'. Robert explained about his diagnosis and the representative questioned if he was telling the truth. We were not trying to shock her, but it is a story of hope and a story of the power of people. Without the people working to treat and search for a cure - and - without the people who care for us emotionally we would not be doing this well. It is a 'good' story in the respect that it demonstrates that people can pull together and make a difference. We are incredibly thankful for the good people in our lives.

Thursday, February 19, 2009

Feb. 19

We are doing well and keeping active - which is a good thing. The boys are well and so we are well. They are growing, playing, and learning at a rate that is astonishing to Robert and me. They surprise us every day. I watch them play and am reminded of their ability to,live in the moment and be totally focused on the activity in which they are engaged in at that moment. I wish that, as an adult, we had the ability to truly focus on the moment without the worries or stresses we have creeping in on and infringing on our bodies and minds. There are situations that we are totally engrossed in the moment, but the seem to be the exception rather then the rule. We have a lot to learn from our children - they play hard and love hard.
They are innocent in their actions toward each other. They are open minded, open hearted, and open to the diversity that surrounds us. They are forgiving and loyal to each other and share with out hesitation. Each day I will focus on sharing or doing something thoughtful in the hope that everyone else will do the same.

Tuesday, February 10, 2009

Feb. 10th

We are looking ahead and planning ahead and that feels good. We will be participating in The Race for Hope - DC on May 3rd 2009 and are excited for the opportunity. It is energizing, emotional, and rewarding to be a part of an event that is structured to raise money for research of better treatments and ultimately a cure. Being there last year was uplifting and inspiring. This year we want to do more. More with our team, more with our fundraising efforts, and more with the goal of raising awareness for brain tumors and brain cancer.
We invite everyone interested to join our team and walk/run with us on May 3rd. For those friends running remember there is one rule - After running to the finish line you must walk back to those of us who will be walking and finish the race with us. We will also be holding a yard sale to raise money and awareness. We have a team of great friends who are working to plan an successful and profitable sale. We are also contemplating some additional fundraising ideas to be conducted after the race as donations will be accepted until Sept. 30th 2009.
It is often difficult to ask people for support - monetary and/or emotional, but we will - because of the realization that it is necessary to find a cure. We feel so thankful to have been supported by so many and believe that we have done well because of it. For every person who sends us positive energy we THANK YOU! You are our inspiration to do better and to be better.

Monday, February 2, 2009

Feb. 2nd

It is Feb. and it is hard to believe. We are well and trying to keep it all together. The time passes quickly and we struggle to get it all done. We are doing better at completing the logistical matters that are necessary, but still find ourselves discussing it, adding it to a list, and revisiting it before completing anything. We are not living in the fog that we once found ourselves in, but planning and completing jobs still takes some extended time. I'm sure that this is a problem faced by many, not just us.
Robert will have a mole removed on his foot today and will be on crutches for 2-3 days. In Nov. he was referred to a dermatologists at Hopkins because of concerns over the high number and suspicious number of moles seen on his back, chest, and one on the bottom of his foot. Two moles have already been removed and came back as moderate to severe atypia - Basically, not malignant and they removed them in time. We will know more about this latest mole within ten days. The good news is that they are only removing one mole instead of the three that they had originally identified.
The other good news- The boys are taking sports classes and are ready for the warmer weather to get back outside. Bryce starts indoor soccer tonight and Trey is enrolled in mini-sport class that covers t-ball, soccer, and basketball. Bryce will play baseball in the spring and Robert is relieved that he wants to play, as he went back and forth on this decision. All guys are excited and eager to play. Robert is looking forward to getting on the softball field himself. Activity is good and I am happy to have everyone playing.

My Condition - Glioblastoma Multiforme (or GBM)

I was diagnosed with Glioblastoma Multiforme (GBM). This condition has four different grades (I - IV). My tumor is a grade IV GBM. This is the most aggressive GBM tumor. I have included a little section of The Essential Guide to BRAIN TUMORS below to describe the condition more completely.

Astrocytoma

An astrocytoma develops from star-shaped glial cells (astrocytes) that support nerve cells. These tumors can be located anywhere in the brain, but the most common location is in the frontal lobe. Astrocytomas are the most common primary CNS tumor.

The physician, usually the neurosurgeon or neurooncologist, will discuss the type and location of an astrocytoma. The pathologist will assign it a grade. Astrocytomas are generally classified as low or high grade. Low-grade astrocytomas (grades I and II) are slow growing. High-grade astrocytomas (grades III and IV) grow more quickly. The main tumor type is listed for each grade. There are additional tumor types in each of these grades.

The WHO classification divides astrocytomas into four grades:

  • Grade I Pilocytic Astrocytoma
  • Grade II Low-Grade Astrocytoma
  • Grade III Anaplastic Astrocytoma
  • Grade IV Glioblastoma Multiforme (or GBM)

Characteristics

The characteristics of an astrocytoma vary depending on the tumor’s grade and location. Most people are functioning normally when diagnosed with a low-grade astrocytoma. Symptoms tend to be subtle and may take one to two years to diagnose. This is because the brain can often adapt to a slow-growing tumor for a period of time. Highgrade tumors may present with changes that are sudden and dramatic.

Symptoms

  • Headaches
  • Seizures or convulsions
  • Difficulty thinking or speaking
  • Behavioral or cognitive changes (related to thinking, reasoning, and memory)
  • Weakness or paralysis in one part or one side of the body
  • Loss of balance
  • Vision changes
  • Nausea or vomiting