Thursday, May 14, 2009

Good News - Different News

Oh where to begin. First off, this is Kari writing, so I'm not as eloquent as Alex, but I know others are wanting updates on the Houston trip and I'm not sure Alex has computer access to update himself, so you are stuck with me. And forgive me if I get details wrong. All this is second hand from Danielle and my mom. I was not there, but the key info should be correct. All in all the news is good, just a different course of action than they went down there hoping for. The tumor has shrunk!!!! Can't get better news than that, ok, so the tumor is gone would be better, but let's be realistic. I don't think any of us really believed the taxol would shrink the tumor, our hope was that the tumor wouldn't grow and prevent spreading while the doctors figured out what to do next. Well, good ol' taxol has shrunk the tumor, and has had minimal negative reactions on Alex. Alex, may scoff at me saying minimal reaction, but considering the first chemo he ever did nearly killed him; minor complaints of pain, neuropathy, and general malaise are a walk in the park. So now the doctors want to give taxol 2 more rounds to see what it continues to do. Then keep going for as long as necessary and as long as Alex can handle the chemo. Eventually the taxol will start to take a toll on his body and he will have to try something else if needed. The doctors also have another chemo in mind to try, so there are options. What happened to the transplant idea, it is still there, but an ultimate last result. Why??? Dr. Reardon is why, and after much thought he is right. Dr. Reardon has not been a fan of the transplant from the beginning, but the Dallas doctors thought it was the best option. We never understood why Dr. Reardon was not a fan, but he met with Alex Tuesday night and made his case. Partly, if you look at Alex right now, he looks pretty healthy, definitely not in heart failure, so he would have a hard time even getting on the transplant list. List aside, Dr. Reardon is a believer that you stick with the heart God gave you for as long as you can. Right now, though it has cancer, his heart is working and working quite well, so there is no imminent need for a new heart. Third, transplants are their own little world of nastiness, and to be avoided at all costs. Transplants often are rejected, to prevent rejection, patients take A LOT of medication that causes many negative side effects, one of which being allows cancer cells to flourish. So if Alex had any other cancer cells in his body, the antirejection drugs would not allow his immune system to fight the cells, and he could easily get cancer somewhere else. So, even though Alex may eventually need a heart transplant, now is not the time.

So, on to the questions I had when I heard the news and many of you may have the same questions.
What if the cancer spreads in the meantime, and then he can't get a heart transplant? Well, and this is just hopeful speculation, Dr. Reardon said these types of tumors either spread in a nasty way or tend to stay in the heart. Because Alex has been battling this for 8 years, and solely in his heart, he is thinking that Alex tends to have the kind that doesn't spread, at least when it is controlled, with chemo and resection surgeries. So, the hope is that his cancer won't spread.

What if Alex can't do chemo anymore? Dr. Reardon continues to not feel this location of the cancer is operable, he said you don't mess with the skeletal frame of the heart, and the cancer is along the septum. But...he said there are other options for surgery, such as artificial heart, so that may be the next option, before a human heart transplant.

How is Alex handling the news? Really well, Dr. Reardon offers Alex reassurance and comfort that no one else can. When Alex got the news this time, I really believe he thought he had months to live. Dr. Reardon assured Alex that right now he is fine, and if chemo continues to work, we don't even have to consider the more drastic options for a while. So he has time, and quite possibly lots of it.

What's the plan? That is perhaps the hardest part for me and admittedly, Danielle too. Every other time there was a clear cut plan, do X, Y, and Z, if it works, you are done. We'll see you at your routine follow-ups. This time, since they don't have the surgical option and chemo tools that they had before, they are trying out new things and seeing what works. No clear cut long term plan, just a we'll try this and see how it goes. If it works, stick with that, if it doesn't, new plan. So, Alex will be on chemo for 2 months. Then he will go back to Houston, see how things look. If the chemo is still working, then they will put in a pic line and keep going with the chemo. Alex requested they not do the pic line now, so he can enjoy his summer in the water. Not to mention, Alex is rough on pic lines. His are usually in his arm and they aren't intended for bulging muscles, so he pulls out the stitches all the time. Such a small thing, but so important to helping him feel a little more normal this summer.

Hope I thought of everything, feel free to post questions and I will try to answer them. Outside the obvious prayer request, pray for some spots found on Alex's liver. Not to alarm, the doctors have seen them before and are not overly concerned. The spots could be a lot of things and they really don't think the cancer has spread to his liver, but they are still watching the spots closely and will see if they respond to the chemo. The liver is the most likely first place the cancer would spread, so they have to be diligent. Just pray that it is not cancer, if the cancer spreads we are in a whole different ballpark.

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