A Day In The Life......

Friday, September 29, 2006

Karl hanging in there

Karl's shingles are getting more attention and better. He's doing PT twice a day but still has limited use of his left side. Doctors are not sure if it will be perminent or just temporary. He's stay in room 683 and Presby Plano for this week and part of next but will be discharged and sent to either PT unit, short term unit or long term care or home care. We are pushing for the PT so he can work on getting his muscle coordination and strength back and get more attention.

I am putting out a call to local friends and local readers for some help, I really need visitors for Karl at the hospital so I can get a break and focus on some quality time with Anika. Even if you can come for an hour, that would be great. Just sit with him or watch tv/movie or hang out. If you can help him snack and drink water while you are there that would be great also.

I am continuing to coordinate with the Oncologist on clinical trials in the US and we hope to have something soon!

Tuesday, September 26, 2006

Karl getting more movement

Karl is getting more movement back in his left arm, leg, foot and hand. He's trying his best to move and do PT as much as possible. He really doesn't want to be in the hospital. His blood counts are good but his shingles have not gotten better and they are putting him on more antibiotics . We continue to search for a clinical trial that will help him beat this and I am hoping to get a list of more to our Oncologist so we can get the ball rolling and hopefully have something set up for when he gets out of the hospital. It looks like another week in there if not more depending on how much movement he can get back on the left side.

Sunday, September 24, 2006

Birthday Blues

Well, Karl spent his birthday and party on Sat in the hospital. We all went over to deliver his Portillo's italian beef sandwich and Rosati's Chicago pizza. He was in high spirits even though he couldn't be home. No news on him coming home anytime soon, he can only move his fingers and toes on his left side- he's not able to move his arm or leg. The shingles are still bad and painful but his overall pain has become manageable. I am starting to look at clinical trials and a call is going into MD Anderson. Thanks to everyone who sent him birthday wishes and gifts! Pam, he got your Frangos and we a sneaking them to him as he's on a low sugar diet due to the steriods causing his blood sugar to go through the roof! he doesn't trust them in the house alone with Anika and I.

Thursday, September 21, 2006

Bad week, Hopefully a better Birthday

Karl's birthday is tomorrow and we are trying to get him home to celebrate- He will be home for his bash on Saturday. Unfortunate news-Baylor Clinical Trials a no go and Karl is in the hospital.
Here's what happened- he had to be off the steroids in order to start the trial. Well, he was on a low dose and the latest brain scans showed no signs of major brain swelling so we got the green light to stop. That was last Friday. He seemed fine since then and even did some walking in the pool on Monday.
In the wee hours of Wed morning Karl was coming back from the bathroom to his study (he sleeps there because he gets up a lot and wakes me up) and fell- he couldn't get up and so just laid on the carpet and slept until I got up at 7 am and found him. I can't move all 212 pounds of him alone and he said he couldn't move his left leg at all- he said it "gave out on him". The day before it was no problem, he just complained of it being very heavy and rightly so as he has major edema in the leg making it hard to walk or wear shoes at all- Swollen like a balloon! Usually if I can get him sitting he can help lift himself up- not this time so I had to call 911 and take him in to the hospital.
His brain has swelled up again, blood is pooling in the spots where he had the cancer removed and on top of all that he has a superficial blood clot in his left leg. Oh did I mention his hemoglobin was down and he's anemic? He had a blood transfusion again yesterday. Scans have show growth and new cancer in his thigh lymph nodes on both legs. Yesterday he lost movement of his left arm and the left side of his mouth is not working (like when you have dental work). Doctors put him back on the steroids and are running tests but we've seen this before and a good 24 hrs on the steroids should have things working again! Blood clot is not a major threat and right now it's the least of our worries. His leg swelling is going down and he's not is as much pain as when they first brought him in.

Baylor was informed and we were turned down for their studies, Dr. Neumanitis said call him when Karl is off the steroids and assured me there would be a spot for him-they have around a dozen melanoma trials that should be open for a couple of months and new ones on the way. The problem is we don't know if he will ever be off the steroids. So we are back to searching for clinical trials that don't care if he's on steroids and trying to race the cancer clock- if he gets worse before we find something, it's going to get a lot harder.

Karl's in better spirits and can't wait to get home, turn 38- thank God for another year-celebrate with his dear friends-eat some cake and open his presents. Anika is bursting to tell him what she picked out!

Thursday, September 14, 2006

Baylor a Go!!!

Karl is accepted into the Oncovex clinical trial barring anything that comes up in the screening so we are one step closer ... Another wrench in the treatment is his Shingles. They have to be cleared up enough by the 25th or they will delay the start of the clinical trial treatment. Karl will go in to Baylor on Monday the 25th for screening and is scheduled to get his first vaccine on the 3rd of October. Keep praying and positive thoughts!

Take a moment

I wanted to let everyone know that one of our friends in the battle against Cancer lost last night. Karl met Jim Janovsky at the Cancer center we both go to. We have gotten to know him and his family. Jim had a 6 year battle with melanoma and passed away last night at 11:30. Please think on and say a prayer for his wonderful wife Shirley and his 3 children.

Monday, September 11, 2006

Baylor Opens Up Options!

Our meeting this morning with Dr. Neumanitis at Baylor for Clinical trials is promising. There are two clinical trials we are shooting for right now. The first is called OncoVex, it's a vaccine that is injected into a tumor site and is suppose to shrink the tumors. Clinical jargon at: http://www.biovex.com/oncovex.html

In a press release, the researchers claim that OncoVEX is more potent than a regular herpes virus, enabling it to operate as an effective "oncolytic" -- or cancer-killing -- agent. The engineered virus is designed to target only harmful cancer cells, leaving the surrounding healthy tissue intact.
Scientists further reconfigured the virus by inserting an extra immune-stimulating gene, called GM-CSF, into its DNA. By adding the gene, the virus stimulates the body's own natural immune defenses into attacking stray tumor cells that might survive initial treatment with the virus. In this way, they hope to reduce the threat that localized cancers might spread to other body parts.
To date, Dr. Hu and her colleagues have conducted preliminary clinical trials using OncoVEX in 26 British patients afflicted with late-stage skin, breast, head, neck or colorectal cancers.
Two weeks after injecting anywhere from one to three doses of the modified herpes virus directly into the tumors, biopsies displayed evidence of "considerable" cancer cell destruction among all the various types of cancers.
According to the researchers, these findings suggest the addition of the GM-CSF gene is initiating the hoped-for protective immune response.If he gets on this trial, he will have a short stay in the hospital for the first injection. Then he goes to the center every 2 weeks for an injection and no hospital stay. They will be able to tell within 4wks if it's working and he will be on it for a long time.

Second trial we don't have details on yet, but it's melanoma specific and another immunotherapy. We will know more later this week. Please pray that Karl gets accepted as we hope he will.

Tuesday, September 05, 2006

Running out of options

Karl went to the Oncologist today and we got some good and bad news:

Good news- no more chemotherapy
Bad news- no more chemotherapy because Karl's body can't handle it

Good news- clinical trial search on
Bad news- that's the only option left for treatment of his cancer

Good news- no more new cancer in his body and his brain is clean now for 4 months
Bad news- the cancer is growing in the known spots and is in his bone marrow

Good news- Karl will be able to enjoy his birthday
Bad news- it could be his last

Sorry that last one wasn't so hopeful. So Oncologist believes the chemotherapy will kill Karl before the cancer does as well as it's not as effective as he hoped on Karl's cancer. Karl's platelets count is low, he's spending a night in the hospital and getting a blood transfusion. This is because the cancer is in his bone marrow and he can't effectively produce enough red blood cells to keep up. We are frantically searching for clinical trials that don't involve chemotherapy - back to the vaccine trials/biologicals to get Karl enrolled. If anyone wants to help our search, please email me or Karl. We are looking at TX first and then the entire USA.
Volunteers will have to do some internet surfing, calling a lot of doctors and hopefully getting through to get him an appointment. Oncologist is also helping but we think if we both call and bug that Karl might have a better chance getting into a trial.

We hold great hope that his future will be brighter and cancer free. He's in rm 698 at Presbyterian Plano for the night and all day tomorrow if you want to bug him:972-981-2698
You can also txt his phone or email to 2146810172@vtext.com. It's free! It can be simple like, "keep the fight" or "thinking of you" etc. If you want to use your txt messaging on your phone you can also send it to his cell number 214-681-0172.
Thanks... the little things are the most powerful!

Friday, September 01, 2006

Karl has shingles

Well, all that sharp back pain is being caused not by cancer but SHINGLES! Karl broke out in a rash two weeks ago, didn't tell me and when I discovered it sent him to the doctor. It's shingles- no wonder he's in a lot pain! Yes, shingles are adult chicken pocks and it is caused by low immune system-stress on the body that reactivates the dormant virus in your body. It's painful and can have long lasting effects. In other news did you guys see this today in the paper:

Gene Therapy Halts Skin Cancer
Researchers Shrink Tumors in 2 Patients With Advanced Melanoma

Aug. 31, 2006 -- Genetic engineers now can arm normal white blood cells with tools that let them weed out cancer cells and shrink large tumors. Researchers in a National Cancer Institute study had success using the technique to treat skin cancer in two men. (what they didn't say was the 2 out of 35-40 patients, those of which died)

Dr. Rosenberg is the lead, our Oncologist called him to see if Karl qualified for any clinical trials and we were turned down- not specifically for this one. But this holds promise if they can get it to work!