Ever changing

Greetings from Texas. I am sitting outside the hospital/hotel at the reflection area writing this update. I just have to tell you how beautiful it is here, sitting in the shade watching the birds drink and bathe in the fountain, just trying to take a break from it all.

As I wrote in my last update Cleve had felt a slight pop which what we think was the head of his pec major pulling off of its insertion point in the shoulder, this was last wednesday. As a result he has had a lot of swelling, pain and a hematoma under his arm as the picture in the last post showed. This also happened after he had an MRI taken that Dr. Ross, the surgeon had wanted us to bring to this appointment. So because of this fact, we have no idea what things really look like at this point in time. Our first appointment of the day was with Dr. Ross. What it comes down to, is that Cleve clinically looks different then what his PET scan nearly two months ago looked like. The hematoma is covering the tumor and Dr. Ross is not sure whether its bleeding because of the muscle or because the tumor itself is bleeding. What the MRI did show is that the tumor is completely wrapped around the brachial plexus which is the entire branch of nerves that serves the right arm. It is because of this that he also doesn't know whether  he is bleeding due to the tumor invading or severing some of the blood supply in the area. So today during our appointment Dr. Ross stuck a needle into the hematoma and drained it, we got over 300cc's of fluid form there. Dr. Ross says that because of the size of the tumor and its location, surrounding the brachial plexus, he does not want to do surgery because it is too dangerous. He also does not want to de-bulk or partially remove the tumor for fear of bleeding and not being able to control or stop it. So, long story short, we have canceled surgery for tomorrow. During this visit Dr. Ross was very honest with us in telling us that he has rarely if ever seen such a large tumor grow in a place he had done a complete resection of previously. He said that obviously the zelboraf is net effective in this area, although it is effective every other place, and that there is more than likely another mutation in the tumor and we just need to find the right medicine for it.

Directly after that appointment we were brought to see Dr. Hwu our medical oncologist here in Houston. She was actually surprised to see what a mess Cleve was too. After much discussion as to which direction to proceed in, she decided to send us home, have another MRI taken, simply so we can see what the heck is going on under there, (Dr. Ross wanted this as well), begin a steroid to reduce the swelling and begin radiation immediately. We are going the radiation route because it has worked relatively well in the sacrum (which is still nice and quiet) and in the brain in the form of the cyber knife. So we know that the tumors in Cleve's body respond well to radiation. What we are hoping to see is a reduction in size of the tumor and although the radiation causes swelling, the steroid will help on both accounts to keep the inflammation down. Once this has happened we will then be able to see if the tumor has reduced in size enough to remove it or, most likely begin the biochemo therapy I have been talking so much about. To remind you what the bio chemo is, it is a mix of about five different medications that work in conjunction to break down the cancer and help kick in his immune system.

So, unfortunately this is not as quick of a fix as we were hoping for since cleve is still in pain and the tumor still impinges his arms range of motion, but it is a path that is the best choice because it is the least dangerous to him at this time. When Dr. Ross drained Cleve's hematoma he did feel some pressure relief and was able to put his arm a little closer to his side, but by the time we got up to our room and I changed his dressings, it was filled up again and oozing blood, darn it. So as it stands now, we will come back home late tomorrow night and try to get him into radiation as soon as possible. A very, very special thank you to Yaser Metwally who has travelled everywhere with us and has been such a great source of support and positivity. It always helps to have a level head to break down,review and discuss all that has been said during these appointments. And an extra special thank you to all who have prayed, sent us good thoughts, and texts to me, Cleve and Yaser today. Your love and support truly means the world to us and we cannot thank you enough, I sincerely mean it, thank you.

 If you all have any questions regarding anything, please don't hesitate to comment or if you want it private, feel free to email me at katiekendall01@yahoo.com.  I know you all care about him and I honestly have no problem discussing it with you, it has become daily life for us for the last year.