change of plans

It seems that we finally have some good news to report for the first time since May. Cleve has been taking a chemotherapy drug called Temodar for the last month because it crosses the blood brain barrier and we were hoping it would help with the brain radiation. Normally this medication is given via infusion for one week every month. Dr. Hwu put Cleve on an oral dose that is small, but over time, every day, delivers more medication. It looks as though it has quieted the cancer and taken away the small spots in the lung and left leg. Woo hoo! The tumor is still present in the shoulder and lower back but seems to be "at rest". So, this means that we are canceling our trip to Houston to see what happens. We are however waiting on one test to see if Cleve is N-RAS negative or positive,  this test will take a few more weeks. I dont even know if we want negative or positive at this point, but if it comes back the way we dont want, we will go down to Houston to resume the treatment plan. It seems as though some prayers have been answered for the time being. Thank you to all who are praying and please continue to do so, we need more results like this.

Preparations

We have been busy, busy, busy these last few weeks. We got our will and medical power of attorney completed and making other appointments to get our affairs in order. We also had a photographer come out to the house (big thanks to the Metwally's) to take some family pictures, that was so fun! We all had a ball and the kids cooperated, yay! Cleve also had his PET scan done today to take down to Houston next week. He just glanced at it but he said it looks like the small spot in his lung and leg are gone thanks to the second chemo drug he's been taking. We can only hope, but I will let you all know once we know for sure. Im a firm believer of preparing for the worst so hopefully it wont happen, I just hope its comes true in this case. I just wanted to give everyone a quick update, I know you all are wondering whats going on.

What we have next is I think another MRI of the brain. I think Dr. Hwu wants to check on brain swelling, and then Cleve's band plays on saturday night, and then Monday we are flying down to Houston. As usual I will have my electronics with me and hopefully everything works. I will keep the blog updated, probably daily since I will have nothing else to do, and hopefully be able to upload some pics while down there. For now, the photographer emailed us a sample picture, one of her favorites from our session on Sunday that I will share with you now. Our first family picture in a long time. A typical weekend morning.

Home

Cleve had his last treatment today and everything went great. Before treatments, one of the doctors gave him a steroid to reduce the risk of swelling of the brain, but it also has helped him to generally feel better, so yay for steroids. It was a long day and drive home but if feels so good to be back. I want to say thank you to Yaser for making the trip with us and to Sandy his wife for letting him come. Two very wonderful individuals.

As promised I have pictures of the last week to share with you all. These first ones are of Cleve and where he had treatment and the room in which the treatment was administered.

These next pictures are of the Stanford campus and two pics of Palo Alto at night.

And finally, Stanford has a collection of Rodin sculptures, these are just a few that I liked. I hope you enjoy them too. The first one depicts the gates of hell, followed by Eve and then Adam. The next is titled the martyr, and i'm sorry but I cant remember the last three's titles.

Good/bad

It's been a rough few days for us. Monday was busy and Cleve really felt it on tuesday. After the fitting appointment in the morning we had breakfast, Cleve took two Vicodin and slept until about 9 pm. He was up for a good three hours and then fell asleep for the rest of the night. The good thing is that after the naps, Cleve has felt the best he has in a few days.

We went in for the cyber knife treatment today at noon, the first of two. Befor the treatment we spoke to Dr. Gibbs, the radiation oncologist. She told us that after reading the scans we took on Monday she found a total of eight tumors in his brain and even though there were that many she was still going to do the radiation treatment. She also said that if there are that many tumors now than there are probably some low level ones not showing up yet and we might do whole brain radiation in the future. She wants to see how Cleve responds to this treatment first though. Some general symptoms of wbr is hair loss and memory loss resulting in some time off work most likely. It's not so much memory loss rather than his recollection and general thinking would be slowed, which could recover over time. Bad news.

Our next set of bad news came when Dr. Hwu called Cleve to tell him that upon thawing out his TIL cells, 60% of them died leaving too few to perform the TIL treatment, thus excluding us from the study we were so desperately hoping to get into. Ok. The good news however is that she will be getting us to Houston in the beginning of February to begin biochemical therapy. As Dr. Hwu put it, we are now able to do what we want to do. we will do two rounds each lasting a week with two weeks at home in between. After that we will have scans to asses the effects. This is our current plan of action. The good with the bad right? At least we have a plan to go on.

When I get home I will also be posting some pictures of some of the events from throughout the week, I just cant do it from my iPad at the moment. I will keep everyone posted, as usual of any changes

Scans

Just a very quick update. Cleve had his CT scan today and his mesh mask fitting. The mask is molded to his face and what he wears during his radiation procedure tomorrow and the next day. Everything went great, and now we are looking forward to a bit of down time today and definitely a nap. Neither of us seem to be sleeping well. Until tomorrow, have a wonderful day!

Stanford

Hello friends,

After a very long day of running around and a bit of insurance approval difficulties, we are on our way to treatment. We first met with Dr. Gibbs, the radiation oncologist, and then met with Dr. Mindea, the neurosurgeon. Both doctors are in charge of Cleve's treatment down here. It was noted by Dr. Gibbs that there was another lesion in his brain that was not noted in the reports, so that brings our total to three, possibly four lesions to treat. She also said that if there are over five lesions, we may not have the cyber knife procedure, but total brain radiation instead. We really don't want total brain radiation so we are hoping she doesn't find any more. The side effects are potentially much worse.

Cleve had an MRI done today and will have a CT scan done tomorrow morning. If we are clear for treatment then he will have one dose of radiation on Wednesday and one on Thursday. We will then follow up with brain scans as scheduled and send them to Dr. Gibbs as well as our other "medical team" we have acquired, and not to mention, so blessed to have. I will of course keep you all up to date as progress is made.

I also want to thank everyone for their continued love, support, well wishes, prayers, and good thoughts. It truly means the world to us to have you all in our corner for this terrible fight and we could not get through it without you all. Thank you so much and much love to you all.

Stanford bound

Just wanted to let everyone know we got an appointment set up for Cleve's cyberknife procedure down in the bay area to treat his brain lesions early next week. The cyberknife procedure is used to treat brain tumors less than 3cm in size and multiple tumors. The patient, Cleve will be fitted with a mesh mask and then put into a tube similar to an MRI tube where he will get re-scanned for accurate placement of the radiation rays. Several rays will enter his skull and meet at the desired, pin point location of the tumor. Because the rays are entering at several different locations,  the beams carry less radiation until they meet at the tumor, therefor there is less radiation damage to the brain as a whole, causing less side effects of standard, complete brain radiation. It has been so successful in fact that Stanford is starting to use it on other locations of the body for different tumors...definitely an up and coming procedure. We are remaining optimistic about this procedure since Cleve's tumors are millimeters rather than centimeters. Perhaps i'm being naive in my assumption that the smaller tumors will be easier to remove rather than the larger multi-centimeter ones. But once we get the brain tumors under control we will be heading down to Houston to MD Anderson for further systemic treatment. As always, while on these trips I will be updating the blog so stay tuned.