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

Saturday Morning May 23rd

Yesterday was a very good day. My mom tends to be pretty tired throughout the day. Her body is doing some pretty hefty repairing. She is having some problems with her right eye still. Her vision (which got us to this point in the first place. See the post below "a little context") has gotten worse. It is only in her right eye and it is mostly her peripheral vision. She describes it as "dark" and she can't see you if you are standing on her right side and she is looking ahead. The eye is also slightly blurred. It becomes more evident when she walks. She moves very slowly and with assistance. From when she first started walking (a few days ago) to now her walking is 100% better but still not quite there. The physical therapist has given her some exercises she can do to get her back in the normal flow as quickly as possible. The therapist also told us your muscles start to atrophy after just 18 hours and for every day you are in bed and only get out to use the restroom, it takes 3 days to get you back to normal. She didn't tell her this to scare her, she told her to encourage her as she moved so slowly. The biggest issue causing her to walk so unsure is that eye. When she walks the eye throws her off balance a bit. The doctor said she should regain some of the vision back but there is a possibility she will not and it is unlikely that she will get all her peripheral vision back. God is bigger than her problem and we are praying for complete vision restoration! This news didn't seem to bug her. Given all the other news of the week, this was pretty easy to swallow. She didn't seem to care because she has lived with this vision problem for more than five and a half years. This doesn't mean she will walk like this the rest of her life, it means that her brain will have to adjust to seeing the world in this new way.

I forgot to tell you all this, modern medicine is pretty amazing these days. Right this minute the tumor they removed from her is is getting cultured in a lab. What they are doing is testing all sorts of chemo / radiation treatments to see what cocktail best dissolves her actual cancer! Not like the chemo of yesterday where they say, "well you have this cancer, lets try this chemo." No, it is tailored for HER EXACT TUMOR. The neurosurgeon said that she will more than likely taking a chemo pill in the morning with breakfast. She will still be able to keep her hair and it won't make her violently ill. Now this is not for sure. We are praying it is but it is whatever the lab results yield. We don't want to see her have to go through radiation or nasty chemo. So pray pray pray. We will know the treatment plan within the next few weeks.

If you were to talk to her, it is completely normal and so many visitors have been pretty amazed by this. She seems pretty normal. Mom is on ZERO pain medicine (not even Tylenol) and is now able to take her other medicine orally but again she just gets worn out pretty quick from all the trauma in her head. They have her taking pepcid for her stomach and an anti-seizure medication which is standard practice anytime you do surgery on the brain. The surgery was pretty intense. I will talk about it in greater detail a little bit later.

We are hoping she will go home today and there was a glimmer of hope that she might have been able to last night but both her Neurosurgeon and Neurologist are on vacation so when the new doctors had taken over they are being a little more cautious but the problem is we are getting a little more anxious. Both my mom and dad are ready to sleep in their own bed! Dad has been there every night.

I am at home cleaning the house and getting ready to go over there but I thought I would give a quick update.

Bottom Line: God is good! Pray for her full vision restoration, that the results of lab will call for a simple chemo treatment, that she will be able to go home today and for her fear. She still has times where the reality settles in and it is difficult.

-Marty

Friday Afternoon May 22, 2009 1:30pm

The therapy dog 'Chloe' had her first day on the job. Mom was one of her first visitors! If you know my mom you know how much she misses our dog Cooper! This made her so incredibly happy. We took a quick photo. You can see how well she is doing and you can see her battle scar on her head. (Don't worry, I asked her permission to post the picture) FYI you are seeing her scar before she does! She obviously can't see it due to the location. So far so good today! Keep praying for the fear. Reality starts to set in of what is happening and it starts to shake her up. It has gone so incredibly fast!














Also, below is a picture of my mom on Monday a few hours after we broke the news to her. The hospital let us bring our dog Cooper to see her. Nothing makes my mom happier than seeing her pup. (yes that includes my dad.....just kidding) You can see how happy she was and how meaningful the picture above of Chloe is! -Marty

Friday Morning May 22, 2009 10:00am

Im sitting in my moms room right now and thought I would give you a quick update. The night went ok. She still would like to have a full nights sleep but it can be a little challenging when they are checking her vitals every 2-3 hours. So we don't know the plan of action but we do know the type of glioma she has and have for a few days. Oligodendroglioma is the official type of tumor. This is the best possible type of Glioma she can have. In fact the surgeon was thrilled when they found out what type it was. Her nerologist hasn't seen this type in 3 years! This was GREAT news! Even better is the stage that it is at. Cancer is usually rated in stages 1-5 (correct me if I'm wrong Paula. There is a lot of info to take in) and her stage was not even rated. It would be considered below a stage 1. "this is as benign as it could possibly be" the surgeon said. Even though this is cancer and not fully benign, this is about as good as it gets. She has most likely lived with this "cancer" for around 7 years and has lived a completley normal life. Considering what it could have been the doctors couldnt have been happier! Bottom line: She is expected to live a long normal life but there is a long road ahead. PS Dad will be posting a little later today! -Marty

The overwhelming support!

My mom is truly blessed! This is how the week has been. These are some of my wonderful cousins and my brothers in Christ! Keep the prayers coming, we have a long road ahead of us! God is good!

A little context.....

So many people want to know if she had signs of all of this happening. Buckle up, we are off.... About five and a half years ago my mom started to lose her Peripheral vision. She went to approximately 8 doctors over the course of several years. Nobody had answers for her. She went to every kind of specialist known including several ophthalmologist, neurologist and family practitioners. Nobody seemed to have an answer. Several doctors seemed to think it was a tear in her eye others thought it was stress / anxiety and some said they had no clue. Being as paranoid as she is, she would ask the doctors, "is this a brain tumor" and all told her that there was no chance. Even up to a month ago her ophthalmologist from UCI said there is no way it could be a brain tumor, and she would have several other symptoms. Not knowing a definitive answer she was referred to a neurologist. The neurologist ordered an MRI for Monday May 18th and here we are today! Read my facebook postings below to get up to speed....Needless to say my mom has had ZERO symptoms other than this slight visual loss. Her life was not affected in any way. No motor skill problems, no loss of memory, no headaches etc.....

Everything so far......

Here are my facebook postings so far so you can get up to speed....

Monday Morning May 18th 11:00am: Please pray for my mom, she had an MRI on her brain this morning. The doctor just called back and they found some irregularities. My dad and her are on their way back to the hospital so she can be admitted.

Monday Afternoon May 18th 4:00pm: keep the prayers coming. We found out it is a brain tumor. Looks like they will be operating tomorrow. Pray it is not cancer. It is about the size of an egg an inch and a half deep.

Monday Evening May 18th 6:30pm: mom is having her brain surgery at 730 am. Please keep praying! Thanks for all the kind words. Please pray for the fear. My mom, dad and family

Tuesday Morning May 19th 5:30am: back at the hospital. They just woke her up and getting her ready for the MRI and surgery. Keep praying. My mom is scared, please pray for peace! Note: her nurses names are grace and mercy!

Tuesday Morning May 19th 7:45am: she just went in. Dr expects it to go for 3 hours. The actual sugery begins at 830. Pray no cancer! We will know about half way through.

Tuesday Afternoon May 19th 12:30pm: mom is out of surgery. They removed as much of the tumor as they could. The tumor is called a glioma and they are unsure if it is cancer or not. We will know in a day or two.

Tuesday Afternoon May 19th 2:30pm: just saw mom in icu. She is doing well. She will be in the icu through the night and hopefully be out of the hospital by the weekend. We still have one big bump in the road we have to get over. We have to see the results of the tumor. Pray for no cancer!!!

Tuesday Evening May 19th 11:00pm: its 11:00 pm and I just got home. It has been a good day. Prayer priority for tonight is pray for my moms fear. She is still pretty scared. The doctors are happy with everything so far. She is a bit sick. She needs to get some food in but is having a hard time from all the heavy drugs today. Pray she gets a solid nights rest and most important, pray that it is not cancer! Results come in a day or so!

Wednesday Morning May 20th 8:30am: 830 am and my mom is still feeling sick. She needs to get some food in. The pain is hard but overall the doctor is still pleased. She is still very afraid to hear the tumor bio results. Keep praying, no cancer and peace. Everytime the doctor comes in her heart races and starts to shake. The cancer docs will be in later to run some tests but final results may not come for up to 5 days.

Wednesday Morning May 20th 9:30am: 9:30am wed, moms surgeon gave the go-ahead to get her out of icu! Yay! He is happy with her progress. Big problem still remains, we need to get the tumor bio results. It is making her very scared and to be honest it is making me a little nervous. Worst case scenario is cancer however, it is very treatable. We are still praying for nothing. The waiting is going to be difficult. Up to 5 days

Wednesday Morning May 20th 11:30am: Taking a break from the hospital. Mom is moving to a standard room. My sister and grandma are with her right now and I just got to the office to try and get a little work done. Also an oncologist will be coming by this afternoon to do some tests on her. This is making her very nervous. Keep praying for her fear. (we will not know if it is cancer for 5 days, but the oncologist still needs to do tests)

Wednesday Evening May 20th 10:30pm: Ok. Good and bad news. Bad first: Unfortunately she has cancer. Good News: It is the best possible type she could have. It is the slowest moving type she possibly have. All the doctors are very happy. Although it isnt exactly what we wanted to hear, it is about as good as it could be. It is below a grade 1. They do not classify it by grade because it is so slow. It cannot spread and she is expected to live long!

Thursday Evening May 21st 9:30pm: good day today. The "c" word (cancer) is a little hard for her still but god has given my dad, my sis and myself incredible peace through this whole thing. We are waiting to find out the cancer treatment plan and we should know in a few weeks. Mom had a good day today and will hopefully be out on sat! Pray for moms peace and fear. We still need lots of prayer! Bottom line, god is god! See the pic I added. It...