Chemoday

We have always done chemo on Friday's. Dr. Nick's nurse had an emergency in her family and chemo was switched from Dr. Nick's office to the fourth floor at the hospital. So on Friday we drove to Orlando for chemo and was informed his appt. was made for Monday. So Friday was kinda of a waste. Saturday and Sunday Blake had to be in Orlando @ 6:30 am, we left @ 4:45 to pick up on of his friends who needed a ride. We don't know what happened we got to Orlando and it was not drill weekend despite what the paper work had said. Michelle said if I ever needed a break she would take Scott to chemo. so today I took her up on it. Probably, wasn't a good day to ask her. It seems his appt. was @ 9:30 am but for some reason they didn't get started until almost 2:00. Michelle must be exhausted and Scott will sleep good when he get's home. I hope I am as good of a friend to Michelle as she is to me.

Happy 4th Birthday Skylar

This weekend we celebrated Skylar's fourth birthday. This years theme was tinkerbell/peterpan.Scott and I had taken her for pictures in her tinkerbell costume. I had stamps of her as tinkerbell for the invitations. I had a wooden deck built over my pool and we had purchased a kids table set that looked like a boat. We had the girls dress up as tinkerbell and the boys as peterpan. Although, the older girls wanted to be peterpan. Everything turned out nice and our signature cupcake bouquet turned out beautiful. We are still working on our website. Hopefully pictures will be up soon.

An Angel

I spoke with Skylar and she said she didn't even cry when she got her stitches out. I thought she would still be traumatized from her emergency room experience. It is still a little red and looks like it my scar. Her pediatrician called it a wellness visit and made an appt. in November for her shots. I went over and played with her in Monday after her appt. We played tag, she rode her bike and I chased her - she is really fast.

No Way Jose`

Skylar has her stitches out today and needs to be updated on her shots. Tom tried to have me or Scott take her. "No Way" It was hard enough holding her while they stitched her up. After she stopped crying she wanted to know why I held her legs down. Needless to say it's probably still fresh in her mind. I'll rescue her tonight and take her ice cream. Sorry Tom "no dice"

1:40 AM

Scott seems to waking up every morning between 1:30-2:00 AM. He wakes me up and we started talking about atrophy , so I started researching. He falls back to sleep but, I am wide awake knowing I have to get up in a hour and a half. So I start thinking about everthing I need to fit into my day. From Senior picture ads for the yearbook to Skylar's Tinkerbell/PeterPan birthday party. I need to plan my menu , and stick with it. All the invitations went out on Monday. I picked up her "PINK" escalade from Toys R Us a gift from her other grandmother and myself. Thanks "Uncle Matt" for putting it together. I still have to make the party favors, which I've already started. I just picked up Skylars Tinkerbell photos on Tuesday. It's funny how excited everyone gets over Skylar's party especially the adults, It's becoming an annual event. everyone's first question, What's the theme this year? Scott doesn't understand why we don't just have a normal birthday party. Define normal: Cake and ballons...boring....I love to see the kids faces when they walk into Skylar's party. All the hard work...it's all worth it. My kids didn't like parties. Skylar loves parties. After everything is over and she takes a nap she wakes and says that was fun let's do it again. It also gives us a chance to see friends we have not seen in awhile. Scott's busy trying to get our party business website up and running.
I know it's a little early but, I have even began working on the Christmas festivities. I received my ornaments , they are awesome. Now I need to order Christmas stockings. So much to do and so little time.

Grandchildren Pull At Your Heart Strings

Skylar has a bad habit of getting out of bed in the middle of the night to play. She only does it at her house. At first I thought she was sleep walking but, she can tell you everything she does. The other night she got up tripped over the vacum and hit her chin on the bird cage. When her dad went to wake her up her chin was split open and she was covered in blood. I got the call at 6:00 am that he was to the hospital. I tried to talk Skylar on the phone but, she had realized she was bleeding and was a little upset. I phoned Scott to see if he could meet Tom and Skylar in the Emergency Room. I couldn't stand it, so I decided to slip over to the hospital for some gammie hugs. It was a good thing, when they said sutures both guys bolted. It was the hard holding her trying to keep her calm as they injected lidocaine in her chin. We were both upset. I told her because she was so brave, I would pick her up from the sitters after work and take her to Toys R Us. When I arrived at the sitters, she already knew what she wanted. She choose a Barbie horse and a new barbie.

She probably could have talked me in to even more than that on that particular shopping trip. Blake had his forehead sewn up when he was two and I don't remember it being as traumatic for me.

What To Do

With the holidays being right around the corner, I was thinking I would do something different for Christmas. Not knowing when Blake will be with us again for Christmas. I didn't want to use the same ornaments, that I have collected over the years. So I thought of a Grinchmas. But, after I thought about that I had a problem with taking Christ out of Christmas. So I decided on a Holiday Whobalation. So I ordered my Grinch tree, found awesome christmas stockings and very whoville ornaments. I have a surprise planned for our Christmas cards. If anyone has any ideas on our Whobalation celebration I am up for suggestions.

Sometimes

medical results can be confusing. For the first time in over a year - I read the MRI report. Not understanding what alot of it meant, I search the internet. The results that were coming up were not what I was wanting to hear. So this is what I mailed Dr. Nick :

Hello Dr. Nick;

Scott and I showed up a week before our appt. and dropped off his films to be read and we didn't hear anything back. I had the report faxed over to me. Although the scan appears to be stable, appears slightly decreased in size : ) I had a couple concerns and questions.1. It says the other scatter in foci and the edema pattern appear to be essentially unchanged compared to June and July 2007. What does this mean?

2. The white matter edema involvement of the posterior limb of the right internal capsule, superior aspect of the corpus callosulm have stable mild mass effect with subtle effacement of the anterior horn of the lateral ventricle and midline shift. Is this new, and is it anything to worry about?

3. What does thinning of the cortex mean for Scott and is any of this related to his left side problems?

Thank You

Dalana

This is Dr. Nick's response:

I think we have attained stability and are trending towards improvement in some cases. What we are seeing is the secondary effect of diminished mass effect. :)!

Great MRI Reading

Scott got a great MRI reading. The swelling seems to be decreasing. Thanks to the Avastin that has been added to the Irrinotecin. So it's the best news we have had in 3 years. Before everything just remained stable, which was still good news but, shrinking is great news. He had his chemo today. At first we were not sure because he has been trying to fight off a cold. But, they went forward and if he gets worst they do a chest x-ray on Monday. He is seeing Dr. Gurgainios on Monday to talk to him about the separation between his arm and shoulder. From the atrophy, that left him with no control over his arm and it swinging it has begin to separate.
So hopefully the Dr. will have a remedy as what we can do. Scott had gotten news that the doctor had given his mom 4-6 months to live. So he is being hit hard both physically and emotionally.
Blake has taken on so much his Senior year. He goes to school full time, he has a full time job, he has to find time to run 2 miles in 14 min @ least 3 times a week, do 100 sit ups and 100 push ups everyday and his Grandmother on his fathers side, whom he is extremely close to, is being treated for lung, liver and bone cancer that had metastasized from breast cancer 11 years ago. My heart breaks for him. I know he is a man now but, for me he is still my little boy and I think that would be alot for an adult to deal with.
We are thankful for the blessings we are given and we will deal with the things we have no control over as they come.

It's For A Good Cause

This is mine & Scott's "God Dog"besides the many God children Scott and I have we also have 2 God Dogs, this particular one is our favorite. He has been entered in the Paw's & Claw's contest because he is so darn cute. The proceeds go to a good cause. Here are the particulars about the contest and a small bit of information about Boston, that was written by his mommy.

Boston is the sweetest puppy and has over come the odds to be here today. After having him for only three days he was rushed to the Animal Emergency Clinic by my brother Scott, where at that time he was diagnosed with Parvo. After five days in ICU he was able to come home and now he is a healthy and strong puppy. As shown in the picture, Boston now supports his Uncle Scott, who is fighting for his life by wearing a Livestrong collar.

Then, on Oct. 1, round one of voting begins. This is where the fundraising part comes in. A 25-cent donation is asked for each vote.

Voting can be done online, by mail sent to the address listed above or in person in the FLORIDA TODAY lobby from 8 a.m. and 6 p.m. Monday through Friday.

After three rounds of voting, the contest ends Oct. 28. One grand prize pet and four others will be featured in FLORIDA TODAY.

Cris Davies, Newspapers In Education manager, said fundraisers such as the pet contest are essential for helping teachers pay for newspapers used in class. Even with discounted rates, it's often difficult for schools to fund the program.

"I would like to raise about $30,000," Davies said of the goal for Paws and Claws.

For more information about Newspapers In Education and the Paws and Claws photo contest, visit www.floridatoday.com

The Years Have Flown By

I remember when I was pregnant with Blake. The first time they placed him in my arms, it felt like my life was complete. I remember each milestone like it was yesterday. I remember his first steps, now he runs through the door to grab something before jetting off in his car, I remember picking him up from kindergarten and him picking a flower from the school yard everyday and giving it to me , now he buys flowers for his girlfriend. I remember the love notes he used to write and place on my night stand, now he hides life size cutouts of people in the house to scare me. I remember how tiny his first pair of cowboy boots were, now he wears combat boots. I remember sending him to space camp for a week, he returned from army basic training in August,I remember the schools basic picture package, I just ordered Senior pictures. I can't believe it's been 18 years and it seems like just yesterday.  
       

Explosive Ordnance Disposal

  

Can you think of anything more dangerous? Blake renegotiated his contract with the Army for 6 years active duty. It requires allot of schooling, math particularly. He is very excited. I think his main goal is to work for the bomb squad. I think it's going to be a good career move for him. I couldn't have asked for a better son. I am very proud of him, at 18 , he has a plan. Although, I am slightly starting to feel the empty nest syndrome that my mother always talked and still talks about. I totally bombed the schedule for last week. I thought Scott had an MRI appt. with Dr. Nick on Thursday, we showed up MRI in hand, turned out his appt. was for this Thursday. Then I show up in Apopka at 6:00 to edit my mom's party video, he had forgotten we had an appt. and he was off at some Gala. So far two strikes. Scott had chemo at 8:00 am on Friday so we stayed at my mom's, which is only 15 - 20 min. away from Dr. Nick's office. So this Friday is an off Friday. Scott did well through chemo but, was in bed all weekend. Skylar spent the night with me on Saturday, her and I took turns swimming to the bottom of the pool to pick up the plumeria leaves. Sunday I took her to the park and called it a day. It seems like there is so much to do and not enough time to do it all in.

Sign Here On The Dotted Line

Blake is headed to Jacksonville this morning to decided if he was to keep his same mos or if he wants to change to something else. Depending on the job openings, depends on how long he will negotiate his contract for. For a descent job, it's probably going to be four years. I can live with four years but, can the people closest to me live with it. It's going to be tough - but, as a parent I want Blake to live his dream and see and experience places other than Florida. Maybe we will getting to see exciting places also.

Scott Can't Do Both Drugs

Scott and I were suppose to go for the h-CRF. The Avastin that we just recently got approved for does not work with h-CRF. Both drugs basically do the exact same thing. Except the Avastin is suppose to be better. I spent the weekend working in the yard. Monday Skylar came over to swim and Blake made tasty steaks on the grill. Blake signed his paperwork, to go active duty, when he graduates in May. I'm having mixed emotions, his MOS is combat engineer. So is not the safest job.

I Wanna New Drug

Scott could be a candidate for a phase III study on a drug called h-CFR. It is used to treat edema in patients that are being treated for brain cancer. It was on T.V the other day with who again Scott's neuro-oncologists - this doctor is up to date on the latest trails and results on everything. I would volunteer Scott to be used as a laboratory rat but this drug seems to have excellent resultsand with Dr. Nick's backing. I e-mailed the doctor doing the trail studies and he is beginning phase III and is interested in meeting with Scott, our appt is on Tuesday. The h-CFR takes the replace of Dexamethasone , when you are on Dexamethsone for so long you begin to have other problems, one is that your body forgets how to make it's own steroids. The h-CFR drug is giving by injection twice a day, Scott won't give him self injections so meet nurse Dalana. The drug reduces the swelling in the brain and also promotes the body to make it's on natural steroids. This is the article I had gotten off the WFTV health website.
BACKGROUND: For thousands of patients with brain tumors, managing the side effects of treatment is half the battle. Many patients must take steroids, like dexamethasone, to reduce the swelling in their brains. Without these potent drugs, the swelling around the tumor can cause neurological problems. Nick Avgeropoulos, M.D., a nuero-oncologist from Florida Hospital Cancer Institute in Orlando, says: "The swelling can sometimes cause a much worse deficit than the tumor does by itself. Steroids work very well at suppressing the swelling, in general, but the problem is, over time, steroids can carry a lot of side effects." Some of those side effects include: » Insomnia » Psychosis » Blood pressure and blood sugar irregularities » Weight gain » Muscle weakness A NEW OPTION: Now, researchers are testing an alternative to steroids to reduce brain swelling. The new agent is called h-CRF, or human corticotrophin releasing factor. It is injected two times a day. The therapy works by helping the body stimulate its own steroids. "For so long, the body has been exposed to steroids in a pill form, and the body, many times, forgets how to make it, so it stimulates it but without all of the adverse events and with a more pure and natural way of using the body's own mechanism to replace and get back to normal," says Dr. Avgeropoulos. THE STUDY: Researchers are currently analyzing the data from Phase II of the study, but they say the results look very encouraging. "We have had pretty much, across the board, very good results with some dramatic results," says Dr. Avgeropoulos. Right now, researchers are testing the drug on the most needy patient population. Researchers are enrolling patients for Phase III of the clinical trial at about 35 centers around the country. For a list of those centers, go to http://www.clinicaltrials.gov/ct/show/NCT00088166?order=3 THE QUALITY OF LIFE FACTOR: Dr. Avgeropoulos says one of the unique and important aspects of this clinical trial is that the new drug is helping patients' quality of life. Many have been able to get off steroids and avoid the harsh side effects the drugs pose. "We know that even if a therapy does not necessarily improve the quantity of life, if that quality of life is 90 percent instead of 10 percent, well we have done something, and we have done something affirmative, positive and good for our patients," says Dr. Avgeropoulos. OTHER APPLICATIONS? Although h-CRF isn't being used to help patients with other disorders right now, Dr. Avgeropoulos says it very well may be studied for rheumatologic conditions like lupus in the future.

Copyright 2007 by wftv.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed

Blue Man Group Rocks

Michelle, Matt, Scott & myself had bought tickets to see the Blue Man Group. .  We left early afternoon to hit Margaritaville for dinner and those famous margarita's. Good thing we didn't have more time than what we had because Michelle and I probably would not have  been able to walk unassisted. I didn't eat much of the day because I knew I was going to drink (dumb idea). We arrived to the show and our seats had plastic bags draped over our seats. Ummmm , we were third row from the stage middle seats not bad. Until Scott has gotten hit with a flying jello blob. It's all fun and games until someone gets hit with a flying jello blob. Good thing you had on your plastic cape
Scotty. Although, Scott said it really hurt. It was nice to actually be out of our usual
environment. Food was good, drinks were better and the company was great. Scott did a lot
of walking but he hung in like a trooper and did great.

Back Home

Scott and I are back home. Scott almost immediately has usage in his left hand but because so much muscle mass has been lost he really has to work hard in physcial therapy. It's good news because we were not sure if the tumor was growing into the motor skills tract or if it was infact swelling. Dr. Nick says it's a good sign and points more towards swelling, and not tumor growth. We are going to take the after noon and rest, we are both exhausted.  Thank you for 
all your prayers.

Please Pray For Scott

We are headed back the hospital this morning. Dr. Nick is admitting him for three days. To administer , Avastin & manitol. In doing this along with his original chemo irinotican we are hoping to reduce swelling in the tumor so Scott will have more useage of his left arm.

Home Sweet Home

Scott had chemo on Friday. He still lags alot on the left side. The lagging seems to be getting worse. It is hard for him to dress himself. He doesn't have the mobility in his left hand to tie his shoes. There is more swelling in the brain so until that is under control then this is suppose to be normal. It's frustrating for him and exhausting for his right side to compensate for his left. He is still in physical therapy and will continue with that. In the mean time Dr. Nick is on vacation and no one seems to have any answers.





Sunday Michelle and I gave my mom a 60th Birthday party. Our theme was "Bringing Back The Oldies"It was great we threw it @ Captain & the Cowboy in Apopka ( my hometown) My mother's sister's one from Texas and one from St. Louis flew in for the big event. I had done a slide show from her as a baby all the way through her children and grandchildren, that was shown through dinner. Michelle and I made centerpieces for the tables and we built a jukebox with working lights to be used for the cards. Captain & the Cowboy said they have never had a party thrown like that there. The head of events tried to buy our props - we told her we had a party business, then she wanted to rent our our things. We also had guests dress the part. Scott dressed the part but, because of his condition couldn't really enjoy the dancing or visiting with the guests.

Monday morning Scott and I flew to St. Louis, rented a car and I drove 2 hours to Ft. Leonard wood for Blake's graduation as a solider. After a short briefing ceremony on Tuesday, on the does and don't s mostly don't s we were able to see and take Blake for the afternoon. The first thing he wanted to do was eat and eat and eat, not even Scott could keep up with him. Wednes
was graduation. Scott and I are very proud of what Blake had
accomplished. The training they put them through was unbelievable. Not everyone that started the basic training finished The ceremony showed how hard they worked and words can't even describe it. After graduation Blake showed the respect that his drill sargents had instilled in him and shook each one hand and thanked each of them. On the way back to the airport we had stop at a resturant to grab a bite to eat. Blake was standing at the salad bar when the chef yelled hey, soilder. Blake walked over to him and he asked Blake if he could cook him a steak. Blake replied with a yes sir, the chef asked Blake how he liked his steaks. The chef personally delivered the steak to Blake and saluted him. When we arrived to the airpot I noticed our tickets and and seats were not together. I went to the ticket counter and asked if they could place us together because we haven't seen him in 9 weeks and he just graduated from basic. She asked if he was in uniform and he was so she bumped us all to first class and told Blake they supported all they do.
Blake can hold his head high because he is an American Soldier.
"Congratulations Blake"

Chemo And Other Things

Scott had his chemo treatment on Friday. He felt nauseated on Saturday so I gave him 2 ginger root pills.  Today he seems
like he feels better. It amazed and saddened me the amount
of people that either drive their self or get dropped off for
their chemo treatments. I could not imagine either  Scott
driving himself or me just dropping him off.  Skylar spent
Saturday and Saturday night with us. Michelle came over so
we could build a jukebox card holder for my moms party.
It was challenging going shopping for supplies and trying to
build, keeping  an eye on Skylar in the pool, at about 5 and
seeming to be getting no where we decided to call it a day
 I received a letter from Blake from basic I don't know
who is more excited about him coming home he or me.