Poor Scott and Michelle

We have a full schedule at work , Michelle is exhausted from crazy chemo day yesterday and Scott is feeling sick. As far as Michelle she says she just needs a lifetime day. I remember those, those are the best. Scott says, it's chemo brain. So I decided to research chemo brain and there is such a thing. It is the cognitive dysfunction.

Subtle Shifts' People who have chemo-brain may find themselves unable to concentrate on their work, or unable to juggle multiple tasks. Some find they don't remember things as well as they used to. "The impact on the individual really depends to a large extent on what kind of demands they have at work or in life in general," said Ahles, a professor of psychiatry at Dartmouth Medical School and director of the school's Center for Psycho-Oncology Research. "People who have very demanding or stressful jobs, or have to multitask and need high cognition, those people are going to notice subtle shifts." Subtle or not, chemo-brain is frustrating to patients, who may suddenly find themselves unable to accomplish tasks they formerly completed with ease. And it's a mystery to doctors, who are still trying to understand what causes it and who is likely to suffer. But researchers are making progress, and new studies have yielded more insights. More Than Anemia or Depression In the past, Ahles said, doctors assumed chemo-brain was merely a byproduct of other chemotherapy side effects like anemia, fatigue, or depression. All of these have the potential to cause problems like memory lapses and concentration difficulties. Treating them, though, can often resolve the problem. The real riddle, Ahles said, is how to help those patients whose chemo-brain isn't caused by one of these factors. As many as 20%-25% of patients fall into this category, but as yet there's no way to predict which patients might be affected. One reason for this uncertainty is the methods used in previous studies of chemo-brain. In most, the patients weren't given tests to measure their mental function before they received chemotherapy. Without this baseline, judging the severity of chemotherapy-related mental decline is difficult. Newer studies, though, are taking measures of mental abilities before treatment and after; those results should help researchers narrow the field of potential chemo-brain sufferers. Researchers are also studying whether certain genetic or hormonal factors may make some people more susceptible to mental effects from chemotherapy. Estrogen and a gene linked to Alzheimer's disease are two targets of investigation. Another pressing issue, Ahles said, is which chemotherapy drugs cause problems, and how. Researchers are using MRI technology to identify what parts of the brain are affected by chemotherapy. "Without knowing what the mechanism is, it's hard to develop a more targeted treatment," said Ahles. "If we knew the path, we could develop ways to prevent [the condition], or at least find ways to treat it if it did occur." Finding Ways to Cope Until such answers are found, what's a patient to do? Talking to a doctor is imperative, Ahles said. A doctor can look for the most obvious causes of chemo-brain and treat them, if possible. If that doesn't work, there are strategies that may help people deal with their chemo-brain. In a workshop held last year, breast cancer survivors described methods that had helped them function more effectively (Journal of Clinical Oncology, Vol. 22, No. 11: 2233-2239). Many women decreased their workload and tried to avoid multiple tasks. They made lists to help themselves remember what needed to be done. They got more sleep. And they tried to avoid emergency situations where quick thinking might be required. Patients must also remember that most people do eventually recover fully from the effects of chemotherapy, Ahles said. "Lots of people have cognitive problems during chemotherapy, but there is a recovery process that goes on with time," he said. "A lot happens over 6 months, more over 1 year, and some after 2 years. "For a given individual, chances are that their cognitive function will recover to normal or near-normal levels a year or two after chemo." Additional Resources Coping with Physical and Emotional Changes: Chemotherapy Effects ACS News Center stories are provided as a source of cancer-related news and are not intended to be used as press releases.

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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.

Quite Fourth Of July

We spent our 4th of July quite. Just Scott and I. My mom's 60th Birthday Party is on the 29th
and I'm trying to hit deadlines for that. We fly out on the 30th Blake graduates Basic Training on
the 1st. Scott has more movement in his left leg and left hand. Hopefully he will be well enough
to travel. If not that's what cameras are for.

More Medication

Scott has had four seizures since returning home from the hospital. He has began taking his Dexamethasone again - this time @ higher doses per Dr.'s orders. He is also really sore where they placed the port but that will get better with time. He has reacted really well to the chemo. so far.

Home Sweet Home

After work Michelle and I headed to Orlando to visit Scott. When we got there  Scott let us know that he had been released and he could come home. He has tolarated the chemo really well so far. The port is really sore, as it should be for about a week.  At least he's home were we both can
rest.

Chemo @ 2:30 A.M.

I had stayed with Scott at the hospital Wednesday, Wednesday night and all day Thursday. We passed the time by playing aggravation - a game that Scott had never played. While we were playing he asked me why they called it aggravation - I told him I show him. His marble was almost home and I landed on it - sending it back to home base. I hung around last night until 8:00 pm waiting for them to give Scott his chemo. because I had to be at work @ 4:30 am and we were not even sure if they were going to give him his dose last night or today. I did try to stress to the nurse I really wanted to be there when they gave Scott his chemo but she had no control over it, the pharmacist had to mix it up and it takes 3 hours. They did end up giving him his first dose @ 2:30 a.m. .He said he did fine and so far feels no side affects. He will receive his next dose July 6 in Dr. Nick's office. Our office closes at 1:00 on Friday's so I will head back to Orlando. Scott may come home today, if not I will stay the night @ the hospital again.

Scott Has The PentHouse Suite

Scott and I checked in to Florida Hospital on Wednesday. He os on the 10th floor and has a beautiful veiw of the water. They began the Manatol and have continued it throughout. Scott did great through the surgery to place the port. They will either began chemo treatment tonight or in the morning. They sent both a physical therapist and an occupational therapist in to work with Scott. It seems his brain has forgotten how to make the left side of his body work. All the doctor's we are dealing with are top notch and Scott is in good hands. I will head back to the hospital tommorrow around 1:00, when I finish work. Thank you to all our family and friends. please, continue to keep Scott in your prayers.

On A Wing and A Prayer

Is how Scott and I live our lives. Scott was not getting any better so Dr. Nick moved his appt. up to today. He didn't like what he saw , when he saw Scott dragging in. Scott will be hospitalized in Orlando tomorrow. Because of the swelling in the brain, Dr. Nick will give him I.V. corticosteroids. That needs to be treated before he can began chemo. Dr. Nick will also place a port in Scott's chest and give him his first chemo treatment. He will use CBT-11 & Avastin. He said he did a clincal trail and it worked really well. Scott will have I.V chemo treatments on Fridays, 2 weeks on, 1 week off for 9 months. We should be able to see a difference in the MRI scans in 2-3 months. Scott is so fatigued I hope he will be able to get a little rest in the hospital - he will be in for 3 days. 

Plan B

We dropped off the recent MRI at Dr. Nick's. After reveiwing the films, there is a slight new area of growth. You have to be really looking for it to see it. We meet with Dr. Nick Thursday morning at 8:00 to discuss plan B. All we know right now is Scott will go off the temedor and begin IV chemo.

Unscheduled Appointment

Scott and I are going to see Dr. Nick today. Scott's Dilantin level is 13, which is normal for him. Scott explained to Dr. Nick's nurse what was going on with him.They again think Scott may have had a stroke. Without knowing for sure - I don't think they should make that diagnoses. It only rattles Scott more than what he already is. Dr. Nick called over for the report and there is a subtle change but, to be sure what it is Dr. Nick needs to see the scan. So we will drive to Orlando this morning to see what the change is. Dr. Nick did start Scott on Dexamethasone as a precautionary measure to reduce any swelling that there maybe.

The "I Don't Know" Monster

Scott had an appt. with his neurologist yesterday. He ordered an Emergency MRI . He was looking for a changed in the tumor or bleeding on the brain. Both were negative, which is great news. But, they don't know why his left side is dragging & why he feels fatigued. I talked to the PA when Scott returned to their office with the MRI films. Every question I asked her - her answer was "I don't know". Are you kidding me. Their solution is physical therapy and they will see him back in 2 weeks. I guess he is suppose to continue to drag around for another 2 weeks - then what? My thought is you would think they would start running test to try and figure out what is going on. Scott says I'm being impatient - I think waiting another 2 weeks is ridiculous. Scott did schedule an appt. in Orlando with Dr. El-Siad (the Dr. that did his sleep study) for Thursday @3:00 pm.

Happy Birthday Pappy

I think this is the sweetest picture. Skylar was so excited to celebrate Scott's Birthday. When we went to pick up the cake, she insisted we get fruit, ogurt (Yogurt) and a spongebob ballon for Pappy because those are his favorite things. Actually, they are all her favorite things. She helped Pappy blow out his candle - we only used one because we didn't want the smoke detector to go off. Then we put a candle on Skylar's slice of cake, lit the candle and sung to her about six or seven times. Skylar also made sure we had party hats and party blow horns. We kept it small. Just Skylar, Scott, Brandi and myself. We ordered pizza and had ice cream cake. Happy Birthday Baby...

Another Letter Home

Scott and I both received letters from Blake. They are hard letters to read. Scott's was really emotional. Blake talks to him about the lack of sleep, the awful food, he's beginning to get sick etc. etc. I guess there is red phase, white phase and blue phase. Each phase is suppose to get easier, right now he's in red phase. His letters seem to have him so beat down. My letter, he didn't let me know how beat down and what a difficult time he was having but, as a mother you can read between the lines. I can't imagine the letters that families receive when their loved ones are at war. Because, receiving letters from basic training pulls at your heart strings. I knew I would miss him but, I didn't know how intense it would be. I made our plane reservations for July 30 , July 31 is family day & he graduates on Aug 1. It's going to be a short trip and I hope he will be able to fly home with us. I can't wait to have him back home.

Functioning Is Still Difficult.....

Scott is still struggling with function on his left side. He is going to call Dr. Nick today , he is seeing Dr. Gold, his neurologist on Wednesday. It's very frustrating for him, so hopefully someone will figure out something soon. I am going to pick up Skylar on Tuesday so she can spend Scott's birthday with us. She loves Birthdays.

Finally

a letter home from basic training. I've been checking the mail everyday like a kid waiting on a birthday package. Yesterday I received a letter from Blake. He says he has lots of stories to tell and he is awaken everyday @ 4:30 a.m. by someone beating on a trash can. He said he has managed to stay out of the path of the drill sargents radar. I really miss him and it's going to be a long summer for both of us.

Experiment

Scott had such a hard time on his last chemo treatment that Dr. Nick wanted to try an IV push of Aloxi which is suppose to help with the nausea. Scott had the injection yesterday and begin his 8th round of chemo last night. He said he felt pretty good today. His Dilantin level is giving him problems again. He is below level, which has caused him to be extremely fatigued & problems with his coordination skills. We agreed that it makes perfect sense to have a neurologist on the coast to monitor his seizure meds.

Kudos Dr. Nick

Recently on the news there was a clip about a new procedure they are using for brain cancer. It involves scorpion venom treatment. I watched the clip and they interviewed the patient and then interviewed the doctor doing the experiment and it is Scott's Oncologist out of Orlando. Scott and I had an appt. on Friday and I was asking him about it. As it stands right now the tumor has to be 80% removable. That is not an option for Scott because it is to close to his motor track but, Dr. Nick has said they have done a couple inter venously where they didn't remove any of the tumor and the scorpion venom went straight to the brain and killed the cancer cells. I asked him in the future would this be an option for Scott and he said absolutely. The great thing about Dr. Nick is he is not only an neuro oncologist but is also big in his work into research. Scott and I both have so much faith in him. Dr. Nick did want to wait another week for Scott to begin his chemo treatment because of the last one making him so sick and landing him in the hospital. So on Monday the 11th Scott has an appt. to for an injection to be given inter venously to ease the effects and last him the 5 days he is in his chemo. This will be his 8th treatment and if everything goes to schedule he will only have 4 more to go.

One in a Million

  My first blog and it's about my wife. She is truly an incredible woman. She is a great friend to those who know her, often running herself to exhaustion to help out when needed. She is an exceptional mother, daughter, sister and most of all Gammy. We truly love our grandbaby.
  But most of all to me she is my wife. You see I waited for the right woman to come along and I was real lucky with my wife. She is always there for me no matter what the news, or problem I am presented with. Most times I tell people I'm the strong one when it comes to dealing with my cancer, but in truth I'm only this strong because of her. Some days I don't feel like doing much of anything and it's her that keeps me going. I am very lucky to have you Dalana, and no amount of words could say how thankful I am for all you do. But, I am. You are my wife, best friend and life long partner. I'm a better man to have known you. I love you very much, and more at every glance.

Husband

p.s. It took me a bit to figure out how to add a picture, your right it's tricky. ;0)

G.I. Blake

                                                        Blake left for Boot Camp today. He will be gone for 9 weeks.  I had a hard time when I knew he was packing but, he was so excited I tried not to show to many tears.

Happy Birthday Blake

For Blake's 18th Birthday we all went Skydiving. I made Birthday shirts for everyone. Blake's shirt said I'm Legal - Let's Jump. All the our shirts said Happy Birthday.Blake has wanted to jump since he was 14 years old. He say;s it was the best feeling in the world. Blake joined the Army as a combat engineer and now he want to change to paratrooper. The following Saturday we had a 18th birthday party/going away party we had a outdoor movie theatre were he showed his video and then everyone watched Black Hawk Down. When the adults and all the little kids left the teenagers played x-box 360 on the 8' screen until 2:00 in the morning.  
Oh and all the nieces and nephews I sugared out on candy because I thought they were going home ended up sleeping over.

On The Road Again

Although Scott seems to have lost 20lbs. He seems to be on the road to recovery. He sounds good but becase his condition was so serious he needs to be careful. He will not began his chemo this round. His immune system needs to be built back up before it takes another hit. Thank you for all your prayers and phone calls. Scitt and I are house sitting for the doctor I work for for a few weeks. So Scott is recovering at what feels like a resort. There is a beautiful back yard with a dock and Scott has even thrown the fishing line in a few times.

Helping To Build Up The Immune System

I researched on line foods to help rebuild the immune system. Along with other foods I found Kale is really good for the immune system. So I printed out a couple recipes, made a grocery list and headed to the store. Last night I made a pot of zuppa toscany soup. It contains sausage, potatoes, onion and kale. I made individual containers so he can just pop it in the microwave. Scott seemed to enjoy it.He probably would have enjoyed it more if he felt better. Tonight I will try a brown rice pilaf recipe I found. It also was full of fresh veggies.

It's Beginning To Take It's Toll

Scott had a significant seizure this morning. He is still recovering from his hospital stay. We phoned Dr. Nick (Neuro-oncologist) the hospital was suppose to be checking his Dilatin level due to the IV antibiotics which depletes the Dilatin. It's hard when you have so many Doctor's treating and no one checks with the other to see what mixes with what. Scott will not begin his next chemo treatment because he is so sick. He's frustrated and depressed. Me, I think I'm going to baker act myself and ask for the suite with the padded room.

Home Sweet Home

Scott's home...Yeah!!!!He was treated for double pneumonia, a collapsed lung and pleurisy. He feels better but is still weak and has lost a lot of weight.

Update

Scott's lower left lung is collapsed. He has been doing breathing treatments and may be able to come home tomorrow. He says he iss feeling better but still seems weak. Thank You for all your prayers and phone calls.

Update

Scott is in room D615. We are not sure how long he will be in there. He phoned me @ 2:00 a.m. to let me know he felt a little better and the pain is not so intense. I don't know if the antibiotics are beginning to work or the morphine was talking.

Rolling With The Punches

Scott was admitted to Holmes Regional Medical this morning with double pneumonia. It's scary because in Scott's case it could be fatal.They are hitting him with strong antibiotics and morphine for the pain.

Speak Now

or forever hold your peace. Scott and I saw Dr. Nick yesterday. Emotionally, Physically & Physiologically Scott has not been doing well. Scott has such a zest for life and people and lately he seem to be slipping way from both. Dr. Nick has a white board in the patient room so I decided to write a few words to remind me what I wanted to talk to Dr. Nick about. Above my words Scott thought it would be funny to write Scott Zech's problems 101. When Dr. Nick walked in the room , extended his hand and ask Scott how he was doing. Scott replied, Great. I then asked Dr. Nick to look at his white board there were a few things I felt needed to be addressed. Physically - Scott does not use his left hand. He uses his right hand to do everything. Dr. Nick wrote beside my list Dr. Nick's solution's. He still still limps and drags his left leg. My solution was to rehabilitate his left side. Dr. Nick agreed that it had to be rehabilitated to remind it that at one time it functioned normally. So he gave Scott a prescription for an occupational therapist. I also was concerned about Scott doing chores and over working himself and explained how exhausted and how he couldn't function physically or mentally. Dr. Nick agreed that Scott should cut his chores by 50%. Emotionally - Scott is depressed, withdrawn, agitated etc. The antidepressant Lexapro is not working. Dr. Nick solution was to switch it to Effexor. Sleeping - I will wake up at 12:00, 1:00 etc. and Scott is laying there watching T.V. If he not's sleeping, he's not resting. Dr. Nick solution was to give him 3 mg of Lunesta. Scott has taken mine before and sleeps really well. He slept like a baby last night. Scott scan was great and he will proceed with chemo on Monday.

Hippity Hoppity

Easter's on it's way. Scott and I took Skylar to see the Easter Bunny today at the mall. People are so rude when it comes to their children and trying to get a picture. I was taken back when this women said excuse me and proceeded to jump in line in front of Skylar. The woman stated that she was there earlier and that her kid decided not to have his picture made and if he has to stand in line again it would give him time to think about it and he wouldn't do it at all. I wanted to tell her that - that happens I don't have any pictures of my kids with Santa or the Easter Bunny and if her kid freaks out in front of Skylar she's not going to have her picture made either. But, I didn't I bit my tongue and let her a head of us ( she was pushing her way through anyway). Did it not occur to her that she was making such a big deal she was freaking the little kid out more than what he already was. Well exactly what I thought would happen did - No way was Skylar sitting on this bunnies lap. It took a little coaxing from Scott but she did agree to stand in front of the bunny as long as he wasn't touching her and she wasn't touching him.

100%

Scott's back to his self. He has full strength in his left arm and leg. Dr. Nick has began decreasing his Dexamethasone. His last dose will be Friday. He will then go for a level check and hopefully start his chemo.

Toxic

I had phoned home yesterday to see how Scott. When he told me he was a little better I thought I would quick update the blog ("Making Progress")Any small change is progress. When I got home Scott could barely function. I urged him to call Dr. Nick to see if we should have seen a difference by now. It turns out we should. So Dr. Nick again reviewed the scans looking for a stroke, bleeding or change in the tumor. Confused they looked at Scott's bloodwork that was taken on Friday. Conclusion is his Dilantin level is high, making him toxic. He is to decrease his Dilantin by one, reduce his Topomax and have his blood drawn on Friday. We will re-evaluate and go from there. Scott is so frustrated. We just have to wait for his levels to decrease from 20 to 13-14.

Making Progress

Scott seems to have a little more strength in his arm and hand. Hopefully the Dexamethasone is doing it's job. He still seems really fatigued which is one of the symptoms with the swelling. I'm trying to help out and get things done before my shoulder surgery on Friday. It seems like there just isn't enough time.

MRI Update

Scott had his MRI yesterday @ 12:00 because it was early we were able to get the films and run them to Orlando. Dr. Nick didn't see any difference in the tumor, there was no bleeding & no sign of a stroke- Great News - Dr. Nick thinks there maybe some underline swelling in the tumor area that's causing Scott's extreme fatigue and his left side weakness. Dr. Nick has stopped the Temedor (Chemo) until Scott gets back on track neurologically. He has prescribed Dexamethasone - an anti-inflammatory to decrease the swelling. The swelling maybe post seizure from that last seizure he experienced while doing the seizure study in December.
Dr. Nick has also thinks it is a good idea that Scott - he is to weak to make any sudden moves. Thank you all for the prayers.

Emergency MRI

We saw Dr.Nick today. Scott has been having problems with weakness on his left side. The past couple of weeks has gotten worse. His left leg drags and his left arm hangs. Dr. Nick has ordered an emergency MRI for tomorrow and we will take the new film and 2 previous films at 8:00 a.m. to the hospital in Celebration. A few of the possibilities are bleeding, swelling in the tumor or he may have had a small stroke.We will not know until Friday morning after our appt. Dr. Nick has not ordered the next round of chemo until he sees the new MRI scan. Please say a prayer for Scott.

A "Berry" Good Weekend

We started our weekend with taking Skylar to the Strawberry Fest. Our Saturday morning began with strawberry pancakes. Skylar found a new game. She thought it would be funny to walk to the end of the isle, cross over to the next isle (I was watching ever move see made) she was saying mommy, mommy , I lost. This poor lady kept pointing me out to Skylar but Skylar would never look at me because she was lost and that would mean the game would be over. She would cross over to the isle I was in and would run to me with her arms open yelling mommy, mommy I was lost. This game went on for a good 20 minutes but, the poor women who really thought Skylar was lost never caught on that it was a game.
They had huge blow up slides for the kids. Each slide was diffrent. Skylar liked the one with the
fishes that looked like Nemo. She would climb to the top and superman slide down. One of the
slides she had a hard time climbing the ladder so Michelle thought she needed help. The
beginning of this obstacle the kids had to dive through a tire. Poor Michelle dove through the
tire on her face. Then she could not decide if she should go over the obstacle or under - she
finally made it ti Skylar to help her climb the ladder so she could slide down the back side.
We then headed to the Home Depot kids workshop tent. Skylar had a choice of a birdhouse or butterfly house. She chose the birdhouse. So Scott and I helped her build her first birdhouse.
We then found the balloon man. He made a parrot and told Skylar to put out her finger so he could sit it on her finger. Skylar wanted to go back to the slides -where she spent most of her time. She was exhausted and fell asleep on the way home. When she woke up I think she thought it was a new day because she asked me what we were going to do today.I have posted a slide show of the day here.
Strawberry Fest

Sunday Scott and I went to see Uncle Sam and Aunt Alice in Daytona. We drove around looked at bikes ( it was the begining of bike week) and then did our yearly lunch at Red Lobster with them. Year to year they never seem to change. What a couple of great people.

Number 5

Scott finished his fifth treatment Friday night. He has been a little greener this treatment. Saturday we went out for alittle while. When we returned home , he slept for about 3 hours. Sunday my family invited us over for a cook out. Scott thought he felt well enough to go. We drove to Orlando but after a few hours we decided to head back home so Scott could get some much needed rest : ( I feel so bad for him - We are keeping our fingers crossed, as he hopes to be back in the gym today. Scott damaged his shoulder in December from the last seizure he had. We are hoping that a few injections through the muscle to reduce the swelling will be enough without surgery.

Thumbs Up

We saw Dr. Nick on Monday. The scan looks stable ; ) Dr. Nick did seem to be concerned with the weakness on Scott's left side of the body because the tumor is on the right side (which affects the left side) and very close to his motor tract. If Scott were to get an infection, flu etc...It would affect the left side of his body because it is more vonerable due to weakness there. Scott thinks he injured his shoulder during his last seizure. Dr. Nick wants him to make an appt. with his surgeon to have it checked out because if it is a shoulder injury it needs immediate attention. If it is not a shoulder injury than we need to take another look at the tumor to make sure the Temador is doing it's job in reducing the tumor and producing healthy neurons that will fight the bad neurons that want to attack the weakside of the body. Turner has also jumped on the bad wagon in supporting Scott. He has a new LiveStrong collar and matching leash..Thanks Michelle.. Scott and I took Skylar to have breakfast with Goofy and Donald on Saturday at Disney's Vero Beach Resort. Sunday we headed to Stuart for Anthony and Tina's first Superbowl party since moving back for Atlanta. We had to leave at halftime for the drive home but manage to catch the last few minutes of the game. We hope to see them more now that they are living closer.

Cuter than Cupid

Two of Skylar's favorite things are Chocolate and her baby.

The Toughest Decision I've "EVER" Had To Make

Blake has wanted to go into the military since the seventh grade. He has changed his mind between the different military branches but, has never changed his mind about the military. For four years I have pushed College and shed alot of tears over his decision. I had hope through the years he would change his mind. Scott and I took him to ground zero last January. The trip kinda back fired on me and Blake wanted to serve his country more than he did before. He wants to help prevent terrorism from happening on our soil again. Blake is 17 and will turn 18 in May. He approached me with a program the Army has it allows him (with parental consent) to attend bootcamp this summer and return home to finish his Senior year in High School while being in the Army. The recruiters came to the house to talk about the program on Monday. As I sat next to him on the couch and listen to him ask all these intelligent questions, I realized that "my baby" has grown up and has to live his dream not mine. The little boy I brought into this world had grown up in what seems to be a blink of an eye. Blake is sensitive to my feelings and over the years has done well with not making a big deal about it. I'm the type of person that needs alittle time to take everything in and time to think about the decision that I'm making and how it will affect not only my life but the live's of the people around me.Everything happened so fast. No time to think he will leave Thursday for testing and a physical on Friday. I respect Blakes decision and will support him.

Legally Drunk

We saw Dr. El-siad on Friday. Scott couldn't even stand without falling into things for a couple of weeks. He felt horriable, he couldn't get his left leg or left hand to operate etc...Seems the Lyrica he was on was posioning him and leaving him feeling drunk. Dr. El-siad felt really bad because he was trying to help a situation and ended up making Scott worse : ( Good news is that by Sunday he had started to feel and walk better. He sees Dr. El-Siad again on Friday at that time he will either up Scott's Topomax or try something new. Scott and I are tired of the Dr.'s wanting to experiment on him like a labortory rat. So we will push to up his Topomax. After seeing Dr. El-siad in Orlando we drove to Apopka to celebrate our niece Kailyn's 9th Birthday. I was telling her that it seems like yesterday that Uncle Scott and I were putting together her crib. It's amazing how everyone's lives have changed in those 9 years.
We also have a new addition to our family a brand new 2007 4 door Jeep and it is loaded. Skylar graduated from her car seat to a booster seat. I don't know which she liked more the new jeep or her new seat.

Busy Week

We saw Dr. El-siad on Friday. He stated that the study went well and he had gotten the information he needed from Scott's third seizure. Dr. El-siad says it was very painful for him to watch ( which made me sad ) He added a new mix called Lyrica in addition to Scott's other seizure meds. We will see how this works and eventually maybe he will omit one and add a higher dosage of the Lyrica. The side affects are the same as all the other seizure meds. sleepiness, dizziness, dry mouth, trouble concentrating, blurry vision, weight gain etc....Dr. El-siad will see him again in 2 weeks.
Scott finished his fourth cycle of the Temedor on Friday. He did well but seem to have a few more green days. We went to see "The Lion King" on Saturday - he was not feeling well and wasn't sure if he was going to be able to go. I know he wasn't feeling well because he allowed me to drive us there and back (my driving scares him) I am the only one that has not had an accident in the history of our insurance company. The show was amazing, if you ever get a chance to see it - see it. This week is crunch week for mine and Michelle's first paid party on Saturday. We have created a Strawberry Shortcake Party along with dress-up. We couldn't find a tea-set that went with our party so we painted one. It turned out very cute.

Thank God for Grandchildren

Scott and I are beginning to get our heads spun back around from our last appt. with Dr. Nick. Skylar seems to always do that for us. We see Dr. El-Siad on Friday for the results from Scott's seizure study.

Deep Breath

 We saw Dr. Nick yesterday. The MRI report the radiologist had written and sent with Scott's December 29 MRI stated the lesion looks to be slightly larger. Dr. Nick measured using Scott's MRI from October and says he doesn't see it.  Instead of doing the regular scheduled MRI in 2 months, we will do one the end of this month and see him February 5 for a new reading.  This is all very stressful but, Scott and I both have the upmost confidence in Dr. Nick. 

Happy New Year

With no signs of our lives slowing down anytime soon, we decided to bring in the New Year quitely. We took Skylar to see the Doodlebops on New Years Day. We had perfect seats 10
rows back from the stage. Skylar was approached to go on stage with Dee Dee
Doodlebop and she said yes but, when they came to get her she said NO : ( .
She met a little friend there and they took turns turning on each others Doodlebop
flag , all the kids enjoyed dancing in the asile. Tom was starting to show slight
signs of stress toward the end of the show. His Eagles were in the playoffs and the
"BIG" game started at 4:15. He was on time for his game - matter of fact an hour early.
I didn't do any of the New Years Day tradition's this year. I am working on a personalized
Strawberry Shortcake Birthday Party and it seems to be keeping me pretty busy.
It is turning out to be adorable. I can't wait to see the kids faces. Scott surprised me with
tickets to see The Lion King in Orlando January 13, I am so excited. We have 5 birthdays to celebrate this month. Scott returns to see Dr. Nick today for his 2 month MRI check and we
see Dr. Elsiad on January 12 for the results from his Seizure study. I am sorry I have not
loaded any pictures for a few months hopefully I will have time to do this soon. We wish
all our friends and families a HAPPY NEW YEAR