The last few days have been very busy indeed. Yesterday morning Brody had an MRI of his abdomen. It was ordered to evaluate if his tumor was pressing against blood vessels in his abdomen and preventing proper blood flow in his left leg. His left leg swelling had gotten worse over the weekend and so we brought him in for the MRI. Results showed that he has good blood flow into his left leg but the return blood flow back out of his left leg was almost entirely occluded by the tumor in his abdomen. So anyhow, the blood flowing into his left leg is much faster than the blood flow back out of the leg. Fortunately, Brody has grown some "collaterals" (smaller newly grown blood vessels that are bypassing the occluded route; basically Brody's body grew blood vessels to create it's on bypass system) which are helping to keep the situation less severe than it would be otherwise. The "collaterals" are not nearly as efficient though at returning the blood back to his heart and so his left leg is still significantly swollen. Somehow, Brody has not had a whole lot of pain from this. His leg is mildly painful and itchy from the swelling.
Right now it is very important for Brody to be able to keep the ability to grow this new blood vessels and create his own bypass system. This means that Brody can not participate in the clnical trial that has the drug I was so worried about him receiving anyway because it works by blocking formation of new blood vessels. Blocking formation of new blood vessels is a mechanism that makes sense to stop the tumor from growing, but it also meant that he would not be able to have surgery until he had been off the drug for at least 4 weeks and then he would not be able to go back on it again until at least 4 weeks after surgery. Anyhow with this new development, Brodys' doctor is not going to start Brody on this chemo regimen and instead we are starting Vincristine and Irinotecan. We can not delay starting chemo any longer while waiting to hear from Sloan-Kettering as to whether they would be able to do surgery to remove the tumor. The tumor is growing too fast to wait. So we have started the Vincristine & Irinotecan Window therapy I described a couple posts ago. The hope that these medications will start shrinking the tumor or at least prevent it from getting larger while we still are waiting to talk to the surgeon in New York City. Brody will not have to be off these medications for long period before being able to schedule surgery. As soon as Brody is healthy enough to travel we will finally be able to get our much needed appointment in New York City. Brody's chances of beating this are better if he can have his surgery sooner rather than later. So we will still be headed to New York City whenever Brody is healthy enough to make the trip.
Brody had surgery this morning to place his port (his chemo is delivered through this) and also for a bone marrow aspiration (checking the bone marrow for cancer cells). Brody is very sore from the surgery and is not wanting to move very much at all. Bill and I were working very hard this evening on trying to get him to move as much as possible and trying to make him understand that the longer he laid still the more sore and difficult it would be to get moving again. Brody has a very high pain tolerance. He does not flinch or complain about many things most kids (and many adults too) would absolutely be screaming about. Anyhow, it was soooo hard to see him in pain like this. He was trying to be so patient too and holding in the cries while waiting on his pain meds that were coming so slowly. But eventually he just couldn't bare it anymore and the tears were coming. The pain did seem to be easing off significantly when I left this evening though. (Bill is staying with Brody tonight and I just got home with his brothers a little bit ago). Brody also just got started on his chemo regimen a few hours before I left the hospital. When I left he was tolerating it just fine. No problems were observed yet. Who knows how tonight will go. Let's pray it's an uneventful night. Brody has taken Vincristine before and tolerated it ok in the past. He has not had the Irinotecan before. Both drugs can cause many, many side effecs. The most troublesome one for Brody last time with Vincristine was nerve pain. Irinotecan is known for causing severe diarrhea (and at times fatal diarrhea). Many precautions are lined up to prevent and manage the diarrhea that will likely be coming from the Irinotecan.
Tomorrow Brody will be headed to get his PET scan. They will be checking his entire body for metastases. I will be headed back to the hospital tomorrow morning after getting Jaden on Geordi on the bus. Brody wanted his brothers to be able to spend the night with him at the hosptial this evening but unfortunately only parents are allowed to stay with him. He is also quite bummed that his brothers will be at school during the day rather than with him tomorrow. Not many days of school left though and we will be sure to get his brothers over to see Brody as soon as they are home from school each day. Brody will be in the hospital until Sunday. He will get to come home Sunday night and then he has to go back in next Monday for the day for more chemo. But he should be back home Monday night and be able to stay home for a week then before going back. We are not sure what will follow the "Window" therapy yet. We're hoping surgery followed by more chemo and then maintenance therapy and hopefully never see sight of a relapse again. Right now we have to take it one day at a time though.
Thanks everyone for all the prayers, kind words and support.
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