Wednesday, July 29, 2009

Many Changes

Silas and Gracie at the fireworks!

My barefoot boys drying dishes (below).
There have been quite a few changes in the Blackburn house. We think they are good, however you can disagree. In our last post we were praying for something, and God has answered that prayer. I really like it when God answers a prayer and everyone has to say, "Wow, that was God!" We were praying for the surgeons to place a feeding tube in Silas. They don't like to do the g-tube surgery on cancer patients, and the surgeon has the right to refuse to do the surgery because it is considered "dirty" (that's their words). We have been fighting with the doctors for this for almost two months now. Sometimes Silas doesn't feel like eating and he needs good nutrition to fight the cancer. The doctors wanted to wait two more months to place the tube, then admitted that he would actually be too weak by then to handle the surgery. So, when were they going to place that tube? We know, they weren't! It seems like they don't think he's worth it. We were waiting for Silas' counts to go up enough to do surgery to replace his port, it had to be removed because it was falling out. While he was under, I felt it would be reasonable to place the feeding tube.
The doctors can't figure out who scheduled the surgery. We have heard stories about the hospital being disorganized, but that was quite funny. Of course, it wasn't real funny at 6:30pm on the Sunday night when they wanted us at the hospital by 6am the next morning. Nick rushed Silas to check his blood counts. I made calls and waited on calls to make sure we weren't going for a sightseeing tour again. Finally, at 9pm we got the blood counts back and they were high enough. Then we got the yes from Shands that the surgery would take place. Gainesville is actually an hour ahead of us, and it takes about 4hours to get there. We didn't have a lot of time. We packed quickly (we don't really unpack these days), and left, taking Aaron with us, getting there with a few hours to rest.
The hospital never got the blood count results, they just took our word on it. The surgeon was not the one who was supposed to do the surgery, which turned out to be a blessing. The surgeon who should've done the surgery would have known the surgery shouldn't have been scheduled and might have cancelled it. Then the surgeon was going to argue with us about the g-tube AGAIN, so I started praying, while Nick talked to the doctor. All of the sudden he said, "so, lets do this g-tube". I thought I didn't hear him right.
The more I research, the more I find that Stage IV NB is not only considered not curable by the medical community, but I'm having a hard time finding any NB children who have survived past about 9 or 10 years old.
While we were at the hospital this time to have the port replaced and the g-tube placed the attending physician came to talk to us. After the last cycle of chemo we had all the scans redone. The scans showed some of the tumors have grown, and none have shrunk. The hem-occ doctor wanted to try some different chemo drugs on Silas. We are already looking at a 15% survival rate, and 7.5% of those children get leukemia. The other 7.5% have long lasting, major side effects. This is just not a cancer they cure with chemo.
After much prayer, and research, Nick and I have decided to discontinue the chemo. Yes, we can do that! We are actually Silas' parents; despite the news media and some of the doctors opinions. We are continuing the natural things we were doing with Silas, they give him a great quality of life, even if they didn't cure the cancer. We have also been able to add some things because of the g-tube that we could not do previously.
Silas is a very happy boy. He has no idea he's sick. He has probably hurt for so long he doesn't know life is any different. Occasionally he is fussy, but not much. He is very good natured about all of the treatments, supplements, and vitamins he has to take. Normally he runs around with more energy than any of us can muster up and we are left wondering if we should be taking all of the things that he's taking.
We are trusting God for the healing of Silas. We are using the wisdom God has given us, and are gleaning wisdom from others who have been here before. We believe God's plan is to heal Silas and we have seen small improvements already.
*Above is Bro. Brian, a good friend of ours with Silas and Buddy Stonewall.*

Wednesday, July 8, 2009

A Quick Update

This is my favorite picture of my little Silas Boaz so far!
This is just a quick update, to let everyone know how things have been progressing. Silas has finished his third cycle of chemo. We did it at Sacred Heart in Pensacola to be closer to home. We were only there for five days, then we were able to come home. Silas had a reaction to one of the chemo medicines, but since there were no big hives, breathing problems, or such, they would not discontinue the chemo. I was very upset, and although they knew it, it doesn't seem to affect them at all.
They did redo the scans again after the chemo was complete, and found that the tumors are much the same, with increased activity (growth) on the skull. The survival rate for this cancer, with their protocol chemo is only 15%. Half of those (7.5%) get leukemia later in life, the other 7.5% have major side effects. There's not a lot of hope from the medical standpoint.
But, we happen to know things they don't. Most of all I know God, and he can do anything he wants. Silas hasn't had a fever at all this time. That isn't normal. He has had other expected effects, but not as bad as most people do.
Silas is having a good time, as usual, at home with his family We took him to the fireworks, and he really watched them. We met the Ungers there at the fire works, and Silas was happy to see his friend, Gracie. They did the typical 2-3 year old boy-girl thing I remember Josiah and Kelsey (Unger) doing, they are the same age also. Gracie bossed, Silas ignored her bossing and did his own thing, and they played anyway. It's quite funny to watch. The girl wants to boss, but the boy knows somehow, inborn I guess, that it isn't supposed to be that way then sometime around 3 or 4 the girl realizes what the boy knew all along. That the men are the bosses. After that there's not usually a struggle, and they are friends. That doesn't mean the boy always rules the friendship, that's not really a friend. Its just that the struggle for power is pretty much over.
Just on a side note, at Sacred Heart Hospital in Pensacola they have NEVER done a scan on a child without sedation. Until now! I didn't realize it was such a big deal to them, but I insisted he didn't need it He did all of his scans at Shands without it. The head doctor of radiology was very upset and almost refused to do the scans. They ended up having to make a note on his paper work that he did not move during the exam, despite the lack of sedation. Silas' doctor thought it was quite funny, because the other radiology doctor had given us such a problem about it. The tech said she'd never done a scan on a child without sedation, but that Silas was much better than most adults.
There is one pretty major thing we are praying about right now. If you could just pray that it would be taken care of, it would help Silas a great deal. When it happens, I can post what we're praying for!


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