A Hard Decision

On 4:30 Wednesday afternoon our phone rings. It’s Jesse’s doctor asking if we can move her appointment to Thursday instead of Friday. At first I figured that he had a meeting come up on Friday, and our nurse said no way am I calling people and rescheduling them. Then he went on to tell us that he had heard back from St Jude’s, and a surgeon there thinks he can potentially remove 90% of the tumor. My stomach sinks at first. We’ve been hearing for so long that it can’t come out because of the risk in accidentally cutting the aorta and other blood vessels.

I agree to be there along with Mike at 8:45am.

Wednesday night we discuss what surgery could possibly mean ( of course we really don’t know because we aren’t doctors) and what going to St Jude’s could mean. It’s exciting and scary that the surgeon there thinks he can potentially remove that much of the tumor. Would radiation or the anitbody therapy be more effective if the tumor was at least a little removed? What happens if a blood vessel is cut? Could they save her life if they did that or would she die right there on the table?

Thursday morning, Mike and I get up, dress Jesse, and head for our meeting and labs (supposed to be there Friday for labs, they’ll just do them a day early.).

Our doctor sits down with us and explains that he received an email back from the surgeon at St Jude’s saying that he thinks he can remove some of the tumor. He tells us the risks. If she undergoes the surgery it will be at least 13 hours long. She will spend at least two days in ICU on a ventilator. Thinking about Jesse being like that is hard to swallow. The incision to get into remove the tumor will be huge, larger than what she has now.

He also tells us that hind sight is 20/20 in this case. Jesse falls into a small group of neuroblastoma kids – 2-3%… and there is not a lot of data on these kids when comes to surgery. She falls into this end of the High Risk category because her MYCN gene isn’t amplified, but her cells are undetermined. Our doctor tells us that he would suggest the surgery if Jesse’s MYCN was amplified because there is potential for it to return ( there is that word again potential… ).

If Jesse were in the intermediate group, he would not suggest surgery because they often don’t for intermediate kids. But Jesse falls in between these 2 categories… so there is no right or wrong answer. He also tells us that he will be comfortable with whatever decision we make.

Mike and I are floored( I don’t even think that is the word to really describe how we feel, but how do you describe having to make such a decision?).

There are so many what ifs… and questions that will arise from the what if’s

What if we do the surgery and she dies?

What if we don’t do the surgery and it returns?

What if we do the surgery and the radiation and antibody therapy remove the rest (not likely, but not being a doctor… it’s hard for that thought not to materialize)? Our doctor pointed out that the radiation and antibodies will get where they need to go no matter the amount of tissue.

What if we don’t do the surgery and her body absorbs it all anyway?

What if we put her through surgery, she survives only to have a life threatening set back during recovery?

What if when we do the high dose chemo, it causes catastrophic heart damage, ear damage, brain damage…?

What if she gets sick during the high dose chemo with pneumonia or RSV, and can’t overcome it? ( we have to do the high dose chemo anyway… it’s just hard not to think about these things since I am on a tangent)

What if the surgery weakens her body to where the high dose chemo is deadly? ( I know they would probably wait a period of time, but how do they know she is really ready to be subjected to this?)

Is it really worth subjecting her to such pain for a really unknown gain?

Whatever decision we make will we be able to live with it even though we know we should put it in God’s hands (Yes I know this… I am trying to… but it is very hard when this is my baby who I want to live a long full life )?

What damage will the chemo, radiation, antibody therapy cause to surface in her little body years from now?

Will she have to end up having surgery anyway?

Would it have been better to do it now instead of after radiation when the tumor is a scarred up mess?

What damage will the scar tissue from surgery cause her organs or growth in the future?

As our doctor put it: Surgery risks are immediate… right there in your face. In Jesse’s case, the chemo side effects have been throwing up and hair loss, but she is still running around playing, so it’s hard to see the risks that are there. The drugs she has had and the drugs she still faces are all toxic… that’s why they work on cancer.

He does have good news for us. The tumor has shrunk by 50%. This is really important. To be in the antibody therapy study, her tumor must have shrunk by a percentage ( I forgot to ask what that percentage was)

This also complicates the decision to do surgery because if she hadn’t met the percentage, then surgery would be a no brainer in order get her into the study.

Mike and I have a lot of praying, discussing, and pro/con list making to do. Earlier today we had talked about going to meet with the surgeon at St Jude’s to see what he thought and hear first hand from him how he would do the surgery. But tonight as we talk, he might tell us exactly what our doctor has. And there is no way to guarantee that even though his surgery doing the exact same thing was successful last week, that it will be for Jesse. We have a lot to decide… but the really important things is that we are on the same page about it.