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.*


  1. AMEN Ms. Karen! We love you, and prayer from your friends and peace from God is all you need. "If God be for us" like Pastor Buddy just recently preached. We never cease to pray for you all. Oh how we love you dearly!

    Ms. Elsie

  2. Silas Boaz is constantly in our prayers! We love him and your family so much. Discontinuing the chemo is a very good step towards his recovery...praise the Lord for the wonderful parents God has given little Silas. May God continue to bless you all.



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