POST UCLA VISIT Tuesday Morning 6/23/09

Hello All! It has been a while! I know! I have been very busy trying to keep up with life! FYI My mom has access to this too and she has not updated either!

Anyway, time to get you all up to speed.......quickly

Mom has been doing well, she is being eased off the crazy anti seizure meds and onto a new one that hopefully won't make her feel too out of it.

We have been getting pushed in a lot of different directions. Her neurologist, neurosurgeon, oncologist, and radiologist all have different opinions and it is hard to know who to listen to. The bottom line is that moms tumor and type of cancer is really rare (in a good way) and her neurologist hasn't seen this type in 3 years! Nor have the Oncologist or Radiologist. So with a little help from cousin Lisa and some referrals we got her into a world renown Neuro-Oncologist from UCLA medical center for a second opinion.

We made the journey out there around 11:15am yesterday and got her into the office at 12:30 (right on time). We waited and waited and waited. At 2:45 they called her back! IT TOOK FOREVER! As we waited it was hard not to do a little people watching. The reality of peoples hardships was so intense in that waiting room. Mike Roach said it best, "Very very sick people go where the treatment is very very good!!!" Well put Mike! It was so sad to see these young kids and adults that you knew could literally count down to their last breaths. In fact an ambulance was called for a patient while we were there.

When we finally went back to the room the doctor greeted us and asked us if we had all of her records. Thanks to my grandma, we did although we had St. Jude send them to UCLA and they didn't send nearly the amount they needed. Grandma saved the day with her 5 inch binder of every medical record, test, procedure and CD copies of all the MRIs and cat scans! It is pretty impressive!

The doctor took a look at everything and then our list of 1000 questions began! What was truly impressive is that she was able to answer every single question with ease and facts backing it up. She said that my moms cancer is indeed rare but they still see it at a frequency of about 1 of every 10 patients. A lot more than St Jude and rightfully so. After all, this is their specialty!

I will save you every detail and get you the quick recap:

-UCLA wants to do their own pathology report to test a few additional things that St. Jude did not and also to verify the grade of tumor. To do this we need to go to St. Jude and request slides.

-She shouldn't be on they type of anti-seizure meds she is on and to start to go off of them. The type she is on would interfere with treatment.

-They want an MRI at UCLA (Higher resolution machines) in August after all of the trauma in the brain has fully healed so they can reveal exactly the results of the surgery and treatment plan.

-The same day as the MRI will be an appointment with the doctor. This will determine the plan of action although she believes given what they know thus far that it will be a "watch and wait" plan. No reason to do anything if there is a possibility the tumor won't grow back. MRIs every 90 days for the next year and every 6 months after that for the next 5 years. If it starts to show signs of growth than a treatment plan of either radiation or chemo will be used. Both of which are very effective, safe and easy to handle.

-Normal life can resume in 2 weeks! She can start driving, going to work slowly and just ease into a state of normality!

Bottom line: WE ARE THRILLED!!! WE FINALLY FEEL SHE IS GETTING DEFINITIVE ANSWERS, WE ARE AT THE RIGHT PLACE AND HAVE GOOD DIRECTION!

Monday Evening June 1st 2009, 8:00pm

Yes, I have been a little behind on the posts. Mom is doing pretty well. On Friday she got her stitches removed and was able to wash her hair! Huge boost in how she felt after that! Her hair covers the spot nicely and the stubble holds the rest of the hair in place like velcro! It helps that she has a hair stylist in the house to make sure that area is covered. Mom and Dad went to church yesterday and she realized that it was a little much for her. If her neurologist knew she would have flipped out. Lesson learned Dr. Rosenthal!!! She is having some bad allergy spells right now that is not helping her head out. This morning I woke up, my dad had already left for work and my mom was sitting on the couch teary eyed. I stayed for a few hours until my sister got back from her chiropractor appointment then I was off to work. I am very very blessed that I am able to work from home with my laptop and my boss is very understanding. This is still tough for her to swallow but for the most part her spirits are high. She has adjusted very well to the anti-seizure meds and is walking very very normal again. We do 3 walks a day around the block to keep her a little active and to keep her lungs clear. There still is the occasional nausea though so you can keep that in your prayers. We are anxiously awaiting the results of the tumor culturing to see what the best plan of action is. Bottom line, the doctors are very impressed and she is doing well. Continue to pray for the fear and the results. I will let you know as soon as we get some new news. She has a few more weeks to go before treatment begins. Thank you for all of the flowers, cards and food! It is like a halmark store in here! It is amazing!

-Marty