Lance Armstrong's Tweet to my mom 7/18/2009

My mom had a pretty cool word of encouragement from the man himself, Lance Armstrong.

My soon to be, Aunt Jill, wrote him a message telling him about my mom. He replied with a message on his twitter page. Here is what he said:

"Go Deedee!!! I'm pulling for you and hope you're doing well. Livestrong!"

It wasn't a long message but the fact that he took the time to read Jills message and post that during one of the most intense races of his life left us all speechless!

GO LANCE! We are pulling for you!!!! Livestrong, through Jesus

-Marty

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

Wednesday Afternoon, May 22nd

Mom just got back from her appointment with her neurologist. Everything is looking good. She just reiterated what they already knew for the most part. The neurologist can be a bit of a pessimist so when she said she was "cautiously optimistic" it made my mom pretty happy. She also said given that the tumor is indeed cancer, it as benign as it can possibly be. The doctor was able to adjust her anti-seizure med dosage. Hopefully this will make her a little more stable mentally. She has an appointment with her neurosurgeon on Friday to get her stitches taken out and to get a quick check up.

The results of the tumor lab culturing still haven't come back yet and we won't know the treatment action for another few weeks. They have a panel of neurologists and oncologists that will be reviewing the lab results and will deciding the best course of action.

Oh last thing, the food everyone has brought by has been amazing! A quick tip of the cap to the Parkinsons, Hazens, Doverspikes and Petrosis for bringing us dinner the last few nights and a thank you in advance to all that are scheduled! You have truly made the evenings a little easier!

Thanks again for all of the prayer and support.

-Marty

A Message from Deedee - Monday May 25th 10:00pm

My dearest friends and family-

Words cannot express how blessed I am. I have had several people tell me they have never seen so much support and love for someone. What a blessed woman I am! I love each of you. The body of Christ here on earth in full force. I wish I could kiss each one of you right now. I have a few prayer requests. The seizure medicine makes me very depressed and barley functional. Please pray I can go off of it completely and that I will have no seizures. Also for periodic nausea. Pray God would completely rid my brain of any traces of cancer, that the treatment would be effective and that I would not get sickened by side effects. Please pray for Gods peace that passes understanding as I frequently very anxious and have adrenaline rushes in my sleep. One more thing, that God who we know heals the sick and gives sight to the blind will completely restore my peripheral vision. I covet your prayers. I love you so much!

-Deedee

Monday Morning, May 25th, 10:00am

Wow it has been exactly one week since mom was called back to the hospital from her MRI. It seems as though it has been non-stop. It almost seems like a blur and feels kind of surreal. Reflecting on the week I am so thankful that my parents decided to move so quickly with everything. Before we really had time to take it all in, the surgery, recovery, results and prognosis were already long and gone!

Yesterday was the beginning of a semi-normal day. I played at my church in Dana Point, ate lunch down there and got my car washed. It felt nice to get back into the routine and what an absolutely beautiful day! My sister was off to work and my folks got to spend a quiet Sunday morning at home. My dad made breakfast and both he and my mom sat around just enjoying the morning. We got some visitors around 2:30 and had them until around 6-ish. It was a pretty good day! I wish I had more to tell you but I guess that is a good thing!

My mom has an appointment to get her blood drawn and to see her neurologist tomorrow. Hopefully everything goes smooth as glass! My mom is on her anti-seizure meds that make her a bit paranoid and fearful still. She says she doesn't feel quite right and you know my mom she is very much a worrier. The fact that she listened to herself got her to see the neurologist in the first place. You can imagine now that she is in the hands of my dad and not medical professionals could cause some fear in any normal person let alone her! (Just kidding dad) Lots of doctors to see this week!

Note: We still do not know the treatment she will be receiving so she could really use the prayer for that and her fear.

We have had so many people making sure we are taken care of it is overwhelming! Flowers, cards, letters, meals and insurance claims are pouring in on a daily basis! Wow does my mom have a great army! (I guess because most of them are in God's army) Many people are asking me about meals and such for the next few weeks and luckily we have Trenna Berry around to handle it. So many people want to get involved and it is indescribable. We don't have to even think about it! Saturday night Luann and Gary Parkinson fed the family and Last nights meal was covered by Tom and Bridget Hazen. Thank you so much!

God has been doing amazing things over the past week and it is unbelievable to see him at work. So many things to be thankful for and amazed by!

I should probably go back to work now. It is nice to be back at the office!

The rest of the family should be making posts soon. My mom read the entire blog with all the comments. It has really encouraged her! She actually doesn't remember too much about the week. She likes to see some of the encouraging stuff! Thank you everyone for your concern and your prayers! Many things to come within the next few weeks.

-Marty

WE ARE HOME!!!!!

We just got her home about 45 mins ago! A few things happened today. Before the discharge we found out a few things about what she needs to do for the next few weeks. For the next 2 weeks she has to lay way way low. No laundry, bills or going out. (sounds like a vacation to me) Four weeks after that she needs to take it easy. She should not be driving and she needs to just lay low. She might be able to do a little work but we will wait and see how she does. Also, the blood work shows that she is anemic. This freaked her out of course but not of any high concern with the doctors. Obviosly she was able to go home so all is well. As we were wheeling her out, Paula, Doug, Taylor and Quintin showed up. Wow! This was totally God because my mom was concerned about the anemia news. They are sitting here right now (at home) and Paula was able to put my moms mind at ease! (Paula was an RN in an ICU for many years) How perfect! Her color has already changed and she seems very happy to be home. It was definetly God that Paula showed up and was able to settle her nerves when we got home. Everyday the timing has been amazing! Check out the pictures.....



Now you all know how much my mom missed her dog but I don't think you realize how much our dog missed my mom. Here is a picture of the dog earlier this week moping around while waiting for mom to come home.



We had another therapy dog that came to the hospital this morning and it really got my mom excited to see her pup! See below...


So obviously when we got home both my mom and our dog were thrilled to see each other. My mom teared up and Cooper went absolutely crazy! We had to calm him down but wow was he overjoyed! See below...





In other family news, my uncle Billy graduated with his Masters degree from Cal-State Fullerton. My mom wanted to be there so bad and started to cry when she knew she couldn't make it to the ceremony. As soon as the ceremony was over my uncle went straight to the hospital in his cap and gown to see my mom! Here is a picture....

Great day!

FYI, I HAVE BEEN READING ALL OF YOUR COMMENTS TO HER! SHE REALLY ENJOYS THEM! THANKS FOR ALL OF THE SUPPORT! We are going to keep the posts going frequently. There is a long road ahead and a lot of uncertainty. Mom has an appointment with her neurologist and neurosurgeon on Tuesday and her Oncologist some time next week. We still need your prayers and my mom told me to tell you all to keep praying as she is still very fearful. You will be hearing from my dad, sister and yes, my mom will be making a post soon. Check back! Thanks again!

-Marty