A Day In The Life......

Wednesday, May 24, 2006

No Brain Surgery, Chemo continues

We went to the neurosurgeon yesterday and no brain surgery, they are going to let the chemo and radiation work. Karl is feeling much better and hasn't used his cane in two days. He actually went into work today! He will be doing radiation on his brain this week and next week. Chemotherapy starts the second week of June and they are hoping that they can tone down one of the chemo drugs so he doesn't have such a horrible crash. We are looking forward to the weekend as we have family coming in from Kansas City!

Saturday, May 20, 2006

Karl is Home

Karl came home Friday evening, all counts are up, back to normal. However he is still having problems with some brain swelling and the steriods are the only thing keeping his left side working. We see the Neurologist on Tuesday to find out what can be done- either we continue with the radiation and chemo or he will have more brain surgery.
Karl is extremely happy to be home and to have his medi port back in (he desperately wants to play in the pool with Anika and go to Hawaiian Falls next weekend. Oh, all his surgery wounds are completely healed so more wound doctor or dressing changes for him!

Thursday, May 18, 2006

Hospital Stay continues

Karl is working on getting his counts up slowly, he will be in the hospital maybe through the weekend. He might be getting a medi port put back in tomorrow, we requested it be done in the hospital so that he can rest uninterrupted. It's a fix for the PICC line which they had to take out and put a mid-line in. Mid lines are temporary and we need something more permanent for chemotherapy.
As soon as he gets out, radiation on the spot on his brain and he will start chemo shortly.

Tuesday, May 16, 2006

Melanoma Walk Many Thanks!

To EVERYONE who supported Celine, Anika and I for the Melanoma Walk, THANK YOU!
We had over $1000 donated to the +$25000 that was raised that day for melanoma research. Unfortunately Karl wasn't able to walk but Celine and Anika made the date. We also walked in honor of Kelley Lynch and Kelly Mc Dermott-Goldstein both who are melanoma survivors.

We appreciate immensely everyone's support- wether it be the walk, messages to the family or other acts of kindness- it's what helps us get through the hard times!
Karl, Celine and Anika

Hospital stay continues

Karl has a physical therapist in every day to work with his hand. He's getting better at gripping and lifting. The neurosurgeon prescribed some steriods and they seem to be helping with his arm. No idea when he will be coming home- he's having complications with his PICC line, they have had to change it twice and the infectious disease doctor really wants his medi port back in before he goes home. His counts are increasing slowly.

Monday, May 15, 2006

Karl Didn't Go home, Hospital for this week

Karl's counts have not gone up enough to allow him to come home. Oncologist thinks it's still the chemo drugs causing this. Karl also has been running a low grade fever, infectious disease doctor is worried about infection. Karl had numbness and inability to move his left arm and leg on Sat and was really out of it, doctor's don't know what caused it but are quick to give him a CAT and MRI. The CAT showed nothing except some brain swelling. Oncologist does not think Karl has any more brain tumors, he thinks it's just the drugs. Yesterday Karl had regained his arm and leg control with his hand gripping a little week. I will have updates later today.

Update on the MRI- nothing new except it looks like Karl is bleeding into his brain in the sites where he had the melanoma removed which could be causing the problems with his left side. His neurosurgeon does not believe he needs to do surgery and that they can control the bleeding with medication. This sometimes happens when the blood counts drop so low. Oncologist hasn't been in yet to check on Karl, we think nothing will change until his counts start to go up, it looks like another week in the hospital for him! They are sending a physical therapist to help him with his left arm which isn't getting any better.

Thursday, May 11, 2006

Karl Still in Hospital

Blood transfusion no problem but Karl's counts aren't coming up as nicely as they hoped. It looks like he's going to be in for the weekend. He is hoping to come home on Sat. but his counts are still so low that it's going to take a couple of days to recoup. He can now walk the halls with a mask and we don't have to wear masks in the room.

He's totally upset because of the melanoma walk, he really wants to do it. Anika and I will be participating. We also have big mother's day plans including brunch and the Gaylord Texan with my parents- Karl was hoping he would be home for it!

Tuesday, May 09, 2006

Karl Blood Transfusion

Karl's counts are the same as when he was admitted on Monday and they have decided to give him a transfusion to help his body jump start. He has had platelets transfused last time this happened. He got his "cocktail" tonight after Anika and I left.
On the way home Anika wished on the first star that she saw- she wished daddy would get better and come home in 3 days. (she was specific about the number of days)

Otherwise, Karl is going nuts in the room- he's tired and bored plus he is not able to leave it even to walk the halls. So if anyone who reads this of our friends and family want to, please call him or stop by for a visit, he could use the company!

Monday, May 08, 2006

Karl in the hospital

Karl's white and blood cell count dropped too low due to the chemotherapy, he's in Presbyterian Plano rm 679. He can't be out in the general population because he can't fight off germs, so he's in isolation. No idea on how long he will be in there, it depends on how he progresses. Feel free to call him, he's resting and little tired but otherwise in good spirits. No flowers or plants.


Wednesday, May 03, 2006

Baylor Passes on Karl

Well, the meeting at Baylor wasn't as uplifting as we thought. Their melanoma trials for vaccine Karl doesn't qualify for because he's had brain tumors or has had too many brain tumors. We were informed that we will be out of luck getting him on a vaccine trial for melanoma no matter where we go because of his brain tumors. So we are not holding any hope that MD Anderson is going to give us a different answer.
Karl doesn't qualify for any clinical trials right now because he has had radiation and chemotherapy. So that puts him out of luck for at least a month or two. We don't think we can forgo the chemotherapy to risk getting in a general clinical trial that isn't specific to melanoma. Also because his disease is still being agressive and not showing signs of letting up. Most of the general clinical trials are phase I (experimental), take anyone (guinea pigs) and don't offer much (no idea if it will work). Versus the melanoma vaccines which are phase III (pre FDA approval, proven to work). So we go back to the drawing board with Dr. Wyzinski to see what other options Karl might have to help slow down the progression of the disease---Maybe we will be taking a medical vacation to Canada or Mexico or something... ;-)

Tuesday, May 02, 2006

Scans back..more melanoma

We got Karl's scan results today. The melanoma has moved to his bones, specifically his legs. He also has multiple spots under his armpits, on his neck, on his lower back (in tissue, not bones). We are going to see the Oncologist at Baylor regarding the clinical trials and then will deal with treatment options after we get a better idea if Karl will be able to do a trial.
Dr. Wyzniski felt that the clinical trials are Karl's best treatment option right now as it appears the chemo and radiation is not working to stop the spread of the disease.

Please keep Karl in your prayers and that he will be able to try new options for a cure.