Update 12.30.08

Tom and I have been blessed with a beautiful Christmas. Except for an unexpected two-day hospital stay it was very peaceful...but I get ahead of myself.

A while back, not so long ago, Tom took a rather dramatic fall on the way into TIRR. He ended up getting a heck of a headache and was quite disoriented. By the end of the day we were in the ER getting a CT scan. All looked fine so we headed home.

The headaches persisted as did some pretty significant physical and mental deterioration. We were in constant contact with Dr. Kew (who was on break in India) and decided to check into the hospital for further tests. Dr. New was covering the department during the holiday and took good care of Tom. His steroids were increased (to reduce swelling and pain) and his Keppra was increased (in case he was having unidentified seizures). He improved right away.

We were released Christmas Eve and spent a wonderful quiet evening together. We have been blessed with the best holiday food ever from Penny and John's breakfast, to Flynn pasta, Klein (or Uncle Ralph's) enchiladas and virtually anything my mom makes.

Here is Tom wearing his new headlamp from Nic and Austin!



The love and support and help from our friends and family has been unbelievable.

Tom is now doing much better and gave such a good effort at PT yesterday he went home and slept until dinner after which he slept through the night. His MRIs indicate small if any activity, which is very good.

In a few days Nicole (my sister) is coming from Phoenix to spend a month helping Tom and I. Nicole is an AFT agent. While she is here I anticipate a surge of crime in Arizona while the criminals get it out of their system before she comes back and kicks butt again.

Finally, I hear the fund raiser planning is going great! We already have so many donations for the silent auction and the RSVPs are many many.

We are so grateful and blessed to each and every one of you. Please keep Tom in your prayers.

Love Theresa

Update 12.16.08

Hi everyone,

Tom has started PT, OT, and Speech Therapy. We are working through TIRR which has a great reputation. In OT the direction is on fine motor skills, and Speech is really about memory. In PT Tom is focusing on balance. Apparently balance is largely accomplished through visual feedback, feeling in our feet, and the vestibular system (something about his inner ear)

Tom also had a special eye exam which taught us that his peripheral vision is badly damaged and of course the feeling in his feet has not come back. He has learned to compensate for these well but the damage done to his inner ear is serious and requires a lot of therapy to overcome.

As such, his balance is very bad. He took quite a fall this morning resulting in a trip to the ER for a CT scan. Fortunately it came back negative. We were back on the road in a few hours and treated ourselves to a Big Mac. Sometimes fat and chocolate are just necessary.

We are both learning a lot. One my recent gains has been in learning about Gerstmann syndrome which is neurological condition brought on by brain trauma. It presents with difficulty with math, left/right distinction, and something else I can't recall now (probably something to do with memory haha). While we wish it was not occurring in Tom it is and it is good to have a name and action plan associated with the situation.

All this sounds bleak but it is not. Tom is so happy and we are loving this Christmas season. We laugh a lot and really enjoy being together.

We have terrific support from friends and family all the way from food delivery and rides to an amazing fund raiser in January.

We are so blessed.
Please keep Tom in your prayers.

Love Theresa

Update 11.29.08

Happy belated Thanksgiving. We are up in Arlington, Texas visiting Tom's mom, brother, and his family. It was a lovely few days and we are heading back soon. Since Tom is not driving now I am the chauffeur. It occurred to me on the way up I have never stayed awake that long in a car before!

Monday will be another big day for us. We are heading to TIRR and Tom will have a PT and OT evaluation. From there a therapy plan will be developed to focus on some areas of Tom's brain that have been damaged by the events of the past 17 months and to increase his physical strength. We are both very excited to start this education.

After that we head back to Methodist for another infusion.

Everyday things are getting a bit better. Thank you for your prayers and support.

Love, Theresa

Update 11.20.08

We have had some very good news. Dr. Kew believes the results of the profusion scan show the mass to be necrosis and not tumor. Dead tissue we can deal with as we then only need to create new pathways to learning...and boy are we working on that!

The Doppler looked good showing no increase in the blood clot and Tom's leg swelling is way down. He now only has to give himself one shot of Lovonox a day instead of two.

And finally the last infusion went well. I starting training to be Dr. Kew's assistant and felt very important. I even held my hands pointing up like they do on tv.

More importantly Tom did not have a bad reaction. It took us a full 10 hours to accomplish all the tests and chemo but we slept in our own bed so life is good.

Next infusion is after Thanksgiving and next profusion scan is in two months. In the meantime we are walking several mornings a week and have seen some amazing sunrises. We continue to be blessed.

Please keep Tom in your prayers.

Love Theresa

Update 11.14.08

It has been two weeks from our last infusion adventure and today Tom is back in waiting for the second. As an added bonus he will have a Doppler scan, a profusion scan, an IV, give blood, and listen to his neighbors argue about shopping at Walmart vs Sears. (She likes Walmart, he thinks Sears has better parking).

Yesterday Tom had his first post radiation MRI. It showed a rather significant mass on his right side. The right as you may recall has had radiation only (as opposed to the left which has had two surgeries and radiation). The MRI makes edema, radiation necrosis, and tumor all look the same. So in spite of all the technology we have no idea what is going on in the big ol' area.

At first we thought surgery was coming along quickly to get rid of the mass but now it seems we will slow down a bit and review the profusion scan to see if we know exactly what is inside and what to remove. The scan analysis will not be complete for a week or so which means a decision on going under the knife is still a few weeks away.

Well the neighbor has moved from Doritos to Cheetos which resulted in a huge belch. Once again I am reminded how $100 for a private room is a really good investment. Tom is snoozing so I am going down for the only comfort "food" I can really count on: Tall cafe mocha, non-fat, no whip extra hot.

Please keep Tom in your prayers.

Love Theresa

Update 11.4.08

Hi friends,

We have had one heck of an adventure this Halloween season! Tom went in for his chemo infusion Friday night. Ok allow me to clarify. We left for the hospital at 10a.m. and Tom got his infusion at 6 p.m.! But he got it! This is amazing (and not for the weak of constitution). First Dr. Kew removes THREE vials of CNS fluid from the middle of Tom's brain. It is clear and happy looking. Then she infuses Ara-C a cloudy chemotherapy agent followed by two vials of saline.

Tom said he could hear the air bubbles in his head.

The procedure went well but Tom reacted poorly. Sweating, dizzy, sick to his stomach. Apparently the body does not like the removal of its central nervous system fluid and replacing it with cell-killing chemicals and salt water.

The man rebounded however and after a few hours he was well enough to go home and we were in time for the last of the trick-or-treaters.

Saturday was a great day with errands and naps and healthy food. Sunday did not go as well. Tom had a delayed reaction to the chemo was knocked on his butt. Pain, nausea, exhaustion...and it lasted into and through Monday.

I feel like we are in a movie on the bad side effects of chemo infusions. Popcorn anyone?

This morning is better. We are both off to work and looking forward to a calm and and sunny Tuesday.

Please keep Tom in your prayers.

Love Theresa

Update 10.29.08

Hi Friends,

Tom's procedure went great. He sailed through like a champ and is in great spirits. Although it could be the Vicodin I think he is his usual Zen-master-super-calm-all-is-well-with-the-world self.


I of course maintain the universal balance by being manic and obsessive. Friday we go in for the first drug infusion. I think it is called Ara-C. -- Any brilliant folks out there pipe up if you know about this drug...

Thanks for all your prayers and love and especially for Erin's offer to go in a personally shoot all the bad cells. We may take you up on it.

Please keep Tom in your prayers.

Love Theresa