Decision

Ken has made the decision to participate in the clinical trial, and actually begins tomorrow (wednesday) at 7:00 am! Fingers crossed!!

Post Surgery Follow Up

Today marks the 10th day since the surgery, and Ken is doing great! He has "ditched" the walker completely, and is getting back to his normal self. The physical therapist finally came today, and she has no plans to see him again! An occupational therapist is scheduled to evaluate him on Sunday, but I anticipate pretty much the same results. We had an early morning today, Ken had an 8:00 am appointment with Dr. M in New York, followed by the removal of his stitches. Sooooo...the appointnment was much more complicated than we had expected. The pathology shows that the tumor was, in fact, a grade III. There is now a decision to be made about further medical therapy. Because the resection was so successful, and Ken is young and in good overall condition, the Dr. feels that this may be the time to pursue more innovative therapy. This would be in the form of a clinical trial. Other options include going on a daily "maintenance dose" of Temodar (the chemotherapy that he has been on previously) or another form of chemotherapy, which may carry greater side effects. However, the Temodar is readily available, and he could go on that at any time. There is also the possibility of the clinical trial that we had previously been considering, which is a combination of the drug Avastin, plus radiation; however being on the Avastin would make him ineligible for future therapies. We could also check into clinical trials at Dana Farber or NCI. Or there is a clinical trial opening this week at MSKCC that our doctor has suggested. This would involve receiving a drug via IV once a week (in NYC) as well as an oral medication to be taken daily. There are 3 spots available, and one is reserved for Ken; however, if he declines there are about 10 people in line behind Ken waiting for those spots. So we would need to decide and fill out paperwork on TUESDAY, and likely start trial on Wednesday. The trial would run indefinately...until the tumor reoccurs...so once a week for months or possibly years. Side effects include elevated cholesterol, acne-like rash, mouth ulcers, etc. Oh, and the potential for a "brain bleed", so he would need an MRI after first dose. "No Pressure" but we have to decide NOW. His doctor feels that if he is going to participate in a clinical trial at some point, this is the time to do it...often it is easier to qualify after the first or second recurrence, rather than later on. And this therapy would not close the door on future therapies. Also, it seems easier to prevent a reccurence, than to get rid of a tumor that has already surfaced. So those are our options, at least as I interpret them. We are a bit overwhelmed, so if anyone has any questions or suggestions, I would appreciate it!

Sunday Evening

Ken is home and making terrific progress!! He was released from the hospital Friday afternoon...the kids were so excited to see him! He spent most of the day yesterday resting, but this afternoon he maneuvered the stairs and spent the majority of the afternoon watching basketball from the couch, and even had a few visitors. The home nurse came today and said he is doing really well, and physical therapy and occupational therapy should start tomorrow. He even managed a shower tonight, which, believe me, is a good thing!! Someone set up a "meal train" for us, and I think we have dinner coming every night for the next two weeks, for which we are so grateful. Ken is housebound for the next few weeks, so if anyone local would like to visit, I'm sure he would welcome the company....try to call or text me first, so I can make sure it doesn't interfere with his therapy schedule.

Evening post

Surgeon and Neurologist were both just here, and it looks like Ken will be going home tomorrow! Fair warning to anyone who may wish to visit in the next day or two - he may come home with a walker, but don't be alarmed it is more precautionary than necessary. He seems to be getting better by the hour, and is currently sitting up in a chair watching the basketball tournament. He may need some occupational therapy over the next few weeks, but it's just to get him back to 100%.

Day two

Ken is feeling much better overall this morning. The occupational therapists have not yet been in to officially get him up and walking, but he's "snuck in" a few steps already. He's officially declared his boredom and his extreme dislike of the hospital bed, the food, and basically all things associated with the hospital. So he's ready to go home! Hopefully he will be released tomorrow.

Evening update

Ken is doing much better...still nauseous, but able to sit up and stand up briefly. He had an MRI this afternoon, and his doctor said it looks great. He will need some further treatment, to be determined after they receive the final pathology...most likely chemo of some sort. Looking forward to a better day tomorrow :)

The morning after...

Good morning! Everyone is asking for updates, so here is a quick one...Ken was moved to a regular room in the neuro ward this morning...he is having a bit of a rough time...not feeling well from the anesthesia & meds...occupational therapists have been trying to help him stand but he is having some issues with balance, etc. So he is not allowed out of bed at this point. The Dr.'s haven't been in yet so I have no report from them. I will try to update later. Thank you all for your support!

He's out!!

Ken is out of surgery. Surgeon said it went very well, he removed all visible signs of tumor. They did not do any pathology in the O.R., he feels that it is a grade 3 tumor...but will await the actual pathology report. Ken did great throughout the surgery, has come out of the Anesthesia, but is somewhat agitated...I asked if he's taken a swing at anyone yet, and he said no...phew! I should be able to see him within the hour. Dr. Gutin did remark "he's one big - ass guy!". LMAO!

Surgery update

They didn't actually take him back to the o.r. until about 1:45, so it will probably be a while before we hear anything! All things considered, he is in good spirits, and thanks everyone for their messages!

Pre-surgery update

Ken's surgery is scheduled for early afternoon tomorrow. He doesn't have to report in until 10:30 am, and surgery is typically scheduled approximately 2 hours later. He is in the MRI now, and we are spending the night here in the city. We greatly appreciate all of your prayers and good wishes!