Wednesday, June 25, 2008

Update 6/25/08

Exciting news on the Tom front!

Based on a podcast sent to us by Donna Flynn we became aware that the National Institutes of Health sometimes reviews brain cancer patient's history and offers second opinions. We were able to find the right people to talk to and Howard A. Fine, M.D. (Chief, Neuro-Oncology Branch National Cancer Institute; National Institute of Neurological Disorders and Stroke and National Institutes of Health) has agreed to review Tom’s history and offer us his opinion on how to best proceed. Here is his profile online:

To do this we will need to fly to Bethesda, MD to meet with him and his team at the National Institutes of Health. We have been able to obtain an appointment on July 11, 2008. We will travel July 10 but have been able to set it up to return on the weekend. We have very mixed feelings about this opportunity but cannot pass up the opportunity to learn more.

This all seems to be going great. Tom feels fine and aside from hair loss made it through radiation well. Thursday we have an appointment with Dr. Kew his oncologist and the chemo starts up again.

Thank you for your thoughts and prayers.

Love, Theresa

Monday, June 23, 2008

Update 6/22/08

One year ago today Tom had his first brain surgery. This is our one year anniversary of fighting to win this battle over nasty cells with happy molecules.

Yesterday Tom put it well: "The last year has been terrific aside from a few minor challenges." It is probably not the way I would describe it but that is because I am neither actualized nor particularly positive.

At any rate I thank all of you for the love and prayers that allowed Tom to spend this fine year with us. I fully expect to write the same message every June 22 for the next 10 years (at least).

Love Theresa

Friday, June 13, 2008

Update 6/13/08

Radiation ended Tuesday 6/10/08 and Tom is one happy man. He will continue to have the radiation working in his system for two more weeks. After that we go in for his first post-radiation MRI and to start back up on chemo!

Here is Tom "ringing the bell!" You get to ring the bell on your last day. He had the best support crew ever!

Love Theresa

Friday, June 6, 2008

Update 6/6/08

Peripheral neuropathy

What is that you may ask?

Peripheral neuropathy (pronounced per-if-eral new-rop-athy) is a term used to describe changes in the way that particular nerves work.

Hmm you ask? Can you give me some background?

The nervous system is made up of the brain, the spinal cord and a complicated network of nerves that thread throughout the body. It has two main divisions:
the central nervous system (CNS), which consists of the brain and spinal cord
the peripheral nervous system (PNS), which consists of nerves that carry messages between the brain, spinal cord and the rest of the body (such as the arms, legs, hands and feet).
Nerves carry nerve impulses back and forth between the areas of the body and the brain. Nerves are made up of nerve cells called neurons.

Neurons are very thin. Some are very small, and others can be 3 feet (1 metre) long. Many are shaped a bit like stars that have been pulled at each end so that they have long fingers. The fingers of one nerve cell reach almost to the next neuron, but there is a gap between them.
Motor nerves carry messages out from the brain to all the muscles in the body. Once the muscle receives the message it will react with a movement. Messages can be sent from the brain to any part of the body.

Sensory nerves in the body carry messages to the brain from sensory receptors all around the body. They enable us to sense physical feelings such as pain, touch and vibration and also allow us to know where our body is in relation to the space and objects around us.

When a nerve cell is stimulated by a message such as heat, cold, touch, or sound vibrations, it begins to create a tiny electrical pulse in the cell. This electrical impulse causes a chemical change in the nerve that travels the full length of the neuron. When the electrical impulse reaches the end of the cell it usually triggers the release of chemicals that carry the electrical impulse to the next nerve cell. In this way messages can be sent from nerves anywhere in the body to the spinal cord and then up to the brain.

Wow you are thinking...what are the symptoms?

Muscle weakness - Damage to the motor nerves may cause weakness in the arms and legs, which may make it difficult to walk or to do daily tasks. You may find that your arms or legs feel heavy
Pain in the area - Known as neuropathic pain
Numbness - Known as hypoaesthesia
Loss of sensation - Known as anaesthesia

And finally you may be pondering...why is this in Tom's blog?

Chemotherapy and other drug treatments for cancer are the most common cause of peripheral neuropathy in people with cancer as they can cause damage to peripheral nerves. Ever since Tom got his blood clot back in August 2007 he has had varying degrees of pain, numbness, and weird feeling in his hands and feet. Luckily he brought up to his doctors so often that I had the discussion memorized. Mostly the doctors say it is due to the blood clot. Unfortunately it took a visit last week to another doctor for us to learn that this presentation is either due to his chemo meds or a result of surgery. Since the symptoms vary it is probably chemo related so when he is cured and off chemo these symptoms will reduce and may go away.

How weird is it that finger tingling and foot numbness could be due to a drug designed to kill your dangerous brain cells? Sounds like a sit com.

Thank you for your prayers and thoughts.

Love Theresa

(primary source:

Tuesday, June 3, 2008

Update 6/3/08

Tom is in the final stages of radiation. Up until now they have been giving him a standard dose in and around the tumor cavity. Yesterday they started giving him a boost. This is roughly double the radiation in a very specific area. The area is that which has been identified as the one where the last tumor regrowth started.

Tom's energy remains fine and his doctor is amazed that Tom continues to work his usual long hours. Tom has experienced "some" hair loss but otherwise his appetite and attitude remains great.

Tom has a great radiation team that actually specializes in treating children. The guy on the left is Dr. Paulino and his nurse Peggy is the blond front right. The team has been terrific and we are blessed to be working with them.

Love theresa