Tuesday, June 28, 2011

The waiting begins...

From the time Bronson was born his liver has not been working properly due to all the damage from the tumor, chemotherapy and radiation. We've been told for a couple of weeks that the GI team (the liver people) were "optimistic" that his liver would start working slowly. Day after day Jon and I have anxiously waited for the blood work to show the liver starting to improve. For a couple of weeks his liver wasn't getting better or worse - Bronson was holding his own. However, over the last week we've all of a sudden seen a low decline in the liver function. This morning our oncologist gave me the news.... Bronson needs a liver transplant. By late this afternoon Bronson's name was added to the waiting list for a liver as a priority 3 (1 is the lowest and 4 is the highest priority). Now we have to wait. It could be days, weeks, or months. They obviously need a smaller liver because he's so young and small but, if a liver from an adult becomes available they can split it and still use it. We're hoping that a liver becomes available quickly but, it's also hard to think that for Bronson to receive a transplant it means another family will have lost their little boy/girl.

I know I've mentioned in other posts that Bronson's cancer markers are much lower and almost in a normal range. Although he still has tumors and still has some cancer cells, his neuroblastoma is under control. In my opinion everything has worked out in a weird, but kind of perfect, way. Had his cancer not improved he, most likely, would not have qualified to be put on the transplant list. Obviously, a liver transplant is a big operation and it has associated risks and possible organ rejection but, if Bronson has fought this far, there's no reason for him not to make it through this next journey.  I believe that he will be healed... whether it's a miracle from God or with medical technology and doctors. One way or the other he will make it.

Bronson has been a trooper. Other than his liver, he is doing pretty good. Considering the size of his abdomen and the amount of fluid in it, his breathing is still the same and hasn't become worse. The last few days he's been drinking a little bit from a bottle. We're not pushing him with the bottle feeding though because we don't want him to work too hard and then have breathing trouble. So, he's been feeding a little bit from a bottle and then getting the remaining amount through his NG tube.  He is much more alert and awake these days and has the cutest little smile (even if it's from gas!) and expressions. He loves looking around at the toys and mobile I have in his crib. I can't believe that he's already seven weeks old!! 

Bronson still has a long way to go but at least we're that much closer to the end of this journey than what we were seven weeks ago. Please continue to keep Bronson in your prayers as we now begin our wait for a donor.


Mary said...

I will definitely keep praying for him. I will pray that his liver is miraculously healed or that he gets his transplant soon. I am sad to hear that he needs the transplant, but if that's what he needs then that's what he needs. I agree with you that he WILL be healed.

Is a living donor an option for him? Could a family member that is a match donate part of their liver to him? I know that they are able to do this in some cases and the patient gets their transplant sooner. I know it is none of my business, I was just wondering.

God bless you and your family.

Angela Anthony said...

I don't have all the details about what options we have in terms of a living donor or family member. Everything was quickly moved ahead after I left the hospital yesterday. I waited all day for news and go figure as soon as I left everything happened! So we're meeting with the dr and team this afternoon to go over the process and options we have. They didn't want to wait until our meeting today to put Bronson's name on the list and lose a whole day of waiting.

I will post an update later tonight!

Anonymous said...

I too was wondering about a living donor - but I know nothing about livers, donors, etc. Which is why I am so glad that God is in control and making the plans - and not me. Praying! ~MelissaH

Anonymous said...

You know, at 7 weeks those smiles may very well be real!!!
He is gorgeous!!

Helen in Australia

Anonymous said...

I was wondering same thing about living donor, thought livers regenerate. I think can test anyone willing as dont screen donors from other means, keep us posted!! Cindy