The latest update...
The Roller Coaster ride continues...Stephen was released from LeBonheur this morning in record time and we quickly made our way over to St. Jude for an appointment with the Radiation Oncologist. He was well aware of the situation and ran through some options with us. We sat and talked with him a while trying to decide the best course of action based on the idea that both the belly and the brain lesions were Rhabdoid tumor. We walked away from the meeting with a firm plan in place. We then went upstairs and got ice cream!
With an hour between appointments, we got in our van and headed to Target House for lunch. Yes, we had ice cream before lunch. While we were still in the St. Jude parking lot, Brent's phone rang. It was Stephen's doctor. He had news already on the brain biopsy. News we didn't expect. The spot in Stephen's head is not cancer. That's right it is NOT cancer. (Don't get too excited just yet.) The tissue they pulled out, while it was abnormal, was not cancerous but necrotic tissue of some sort. That is just a fancy way of saying it was dead. We don't know if it was dead brain tissue, dead cancer cells or dead yeast. What we DO know is that when they did a "silver stain" on the tissue they saw yeast growing. YEAST!!! So it is official. The yeast that had been in his shunt, was in his brain. It found a nice little spot and set up camp and hung out, just waiting until we stopped the Fluconozole. This little area of yeast is going to be very hard to treat. Having yeast in your brain is very bad. VERY. They will treat again with Fluconozole and hope it works!
So, now we go on with the decision making process about the tumor in his belly. The pathology came back on that tumor as well. It is Rhadbdoid tumor. When it is in the brain it is call Atypical Teratoid Rhabdoid tumor (ATRT). When it is elsewhere in the body it is called Malignant Rhabdoid tumor (MRT). Or Rhabdoid tumor of the Kidney if it is found in the Kidney (RTK).
We are now dealing with another primary tumor. It didn't spread from the brain into the belly. That doesn't happen because there is a barrier between the brain and the blood. The only way it could have spread from the brain in to the belly would be through the shunt. This was the reason I was so adamant that they not place the shunt in his belly when his spinal fluid was so full of cancer. The shunt didn't get placed in his belly until after radiation. At that point the cancer was gone. Also, because the tumor is in the pelvis and not the belly we know it isn't metastatic disease. It is it's own brand new disease.
Like we have mentioned before, they cannot remove the tumor surgically. It is wrapped around the sciatic nerve and is connected to a major vein. That is why it is growing so fast. It has a great blood supply.
This is what we know about ATRT; It is a genetic disease. It begins because of a mutation of a certain gene. There are different forms of this mutation. The "worst" form is called a germline mutation, which appears in every cell of the body. The germline mutation means that this Rhabdoid tumor can appear anytime and anywhere in the body. You can kill the cancer in one area just to find it appear in another a short time later. As has happened here. We do not have the finding back yet on Stephen's genetic testing but because he has a second primary site, he most likely has the germline mutation.
With all this said, we still have the same decision to make. Do we move forward with aggressive treatment and try to "cure" this tumor? Or do we do high dose radiation on the tumor to slow it down and take Stephen home to enjoy the rest of his life? This may seem an easy decision to some. I have read MANY blogs like this one about children with ATRT. Every family is different. Some families fight and fight and fight until the end. Some take off the gloves and chose to go home and enjoy the time they have left. No choice is the wrong choice. Every family has to face this monster in their own way.
As we see it, we have three choices.
#1 No treatment. Come home. This choice would be to let the cancer go unchecked. It would more quickly take Stephen from us. It would also more quickly end his suffering.
#2 Three weeks of Palliative radiation. Come home. This is high dose radiation done over 15 days to try to slow down or even stop the cancer for a time. This option could possibly allow Stephen some more time to feel good before the cancer takes hold again. It would possibly allow our little family more time with Stephen before he is once again taken by pain and narcotics.
#3 Six weeks of "curative" radiation. Followed by 5 rounds (5 months) of chemo, followed by an attempt at surgery (mostly likely it will still be impossible to remove) followed by more radiation. This option is looking to cure this tumor. It would take 7-9 months to complete.
We have to look at everything we know about this cancer and it's treatments. We also have to factor in everything Stephen has been through. We have to look at future suffering, both from end of life and from treatments. We have to make a decision that is in Stephen's best interest, not our own. I promised myself in the beginning that I would not cause Stephen more suffering just because I don't want to let him go. I will try to live up to that promise.
We have made a decision and will spend some time tonight in prayer. We will sleep on it. If it is right, we'll know it. We will let you all know tomorrow what that decision is. What we ask, is that whatever the decision is, that all of you as our friends and loved ones support us in that decision. You may look at the situation and think that you would do it differently, and you might. We will make the right decision for Stephen and for our family and hopefully we will find peace.
Tonight I would ask that your prayers for us be for clarity. So that we can see clearly our path.