We finally met with the surgeon at Primary Children's on Thursday, but I'm afraid we left a little MORE confused about what to expect than we were before. He basically said we really won't know about a plan of action until they can actually do imaging and a biopsy on our baby when he comes.
Since this kind of tumor can turn from malignant to benign spontaneously, they may postpone the removal until they are sure it is metastasizing. He said sometimes the surgery can be more harmful/dangerous than the neuroblastoma. He said Mike and I may have to make that decision once we have all the information (sounds fun huh?).
The good news: He may not have to undergo major surgery for the tumor removal immediately after his birth.
The bad news: We may not have a quick resolution. We may be in wait, watch, & decide mode for years to come.
The really bad news: When there is a decision to be made it is possible that the wrong one will be made. (If I didn't have a knowledge of the gospel and a testimony of personal revelation I'd lie down, curl up in a little ball. and never get back up at the thought of this.)
Now, I'll be honest, I don't know what to think about all of this. I'm comfortable with a surgeon deciding how he's going to get something OUT, but I'm not super comfortable with a surgeon deciding to leave something cancerous IN. Especially since I'm pretty sure, yet again, that the surgeon has not dealt with a neuroblastoma found in a fetus.
So now I'm on a mission to find a pediatric oncologist who can look at this whole picture and help us figure it out. I pray (literally) that such a person exists, and that we can find him/her.
Don't worry, we're still strong in our faith that everything will work out and that we are in the Lord's hands.... but good golly WHAT A MESS!
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7 comments:
Mel I love you! I have considered mentioning you in my blog and asking for all those I love to pray for you, mike, mylee, and the baby. I don't want to if it will make you uncomfortable. I agree faith and prayers are all we can rely on at this time. I think you are wise to search out a second opinion. I cannot imagine being in your position
the comment before was me by the way. Laurie
Oh Melinda, we will continue to keep praying!
Because you are the motivation behind my participating in Lent, I, too have considered mentioning your family on my blog in hopes to get more prayers going! But I wanted to ask first, because if it's just too personal, or overwhelming, I understand.
I love you. You can do this. I LOVE YOU.
M
As said from the others I am continually praying for you too. I am leaving this comment to let you know that I do see your blog-- but I still plan on calling you on Tuesdays to check in.
Sure love ya.
BFF
I'm sorry to hear about the worrying game you're having to go through. If you'd like to contact other parents who have lots of experience with NB, both in infants and older children, I suggest you go to www.acor.org (American Cancer Online Resource). I think you'll find very hopeful news there in relation to a infant with NB through the words of parents. It is highly likely that the tumor will go away by itself and never come back. When my son was diagnosed a newborn came in, too. His tumor was watched, left untreated, and it went away. NB is the most common soft tumor in infants and is most times fully treatable. Hang in there. Live life to the max.
Wow that is something that's got to be tearing at you from all angles. Good luck and I hope you're able to find someone who can help you guys out! YOu're always in our prayers!
You guys are amazing and all of us will be praying hard that you will find the right person that will make all of this more bearable and hopeful. Thinking of you...
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