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)