More Decisions

The more Mike and I talked about the urologist and how my meeting with her went, the more uncomfortable I was with all of it. Every 10 to 12 weeks under anesthesia to remove and replace the stent made me very nervous.

I decided to call her oncologist to see what his opinion is. He had received a letter from the urologist telling him that the stent would need to be replaced every 8 to 10 weeks. I was dumbfounded at the time frame of the stent lasting she gave Jesse’s oncologist.

Jesse’s oncologist suggested talking with the surgeon at St Judes about removing the piece of tumor that is around her ureter. He isn’t optimistic they will say yes because the tumor has been radiated. Not only that, but her ureter would stand a good chance of being cut. And if that is cut, the kidney will have to be removed (is the way it sounded, but I could have misunderstood… I am exhausted from worrying this weekend… more on that in a bit).

What I don’t understand is why in an age where we can replace hearts we can’t build a new ureter or replace it if cut?

Our other option is to see what a urologist in Richmond will tell us. I am pushing for MCV (my brother works in the pharmacy there).

So right now, I will be canceling her surgery with the urologist and waiting to see what Jesse’s oncologist says.

I asked Jesse’s oncologist if we messed up by not having any of the tumor removed. He said we thought it out really well and made the best decision based on risk vs benefit. It’s still hard not to feel guilty. When I told Mike what our options are, I know he was in tears when we hung up. I don’t know if it was from fear for Jesse or feeling guilty that we didn’t have any of it removed. I just know this bites.

I also talked with her doctor about kidney function. He told me he was ecstatic she’d only lost 20% kidney function. He has seen times where kidney function was reduced to nothing. Plus that poor kidney has been hit with chemo, radiation, stem cell transplant, retinol-a, and antibodies. In his mind only loosing 20% is pretty good.

The other thing I talked with him about was Jesse’s leg cramps, throwing up Friday night, and disinterest in eating Thursday and Friday. The cramps are probably due to her not drinking enough or her kidney not filtering correctly.

Her throwing up might be due to the bacterium. The pharmacy gave her a different color bacterium. We thought maybe the strength had been inadvertently changed. Mike took the bacterium over to the pharmacy to make sure. The strength was correct, but they had changed her to cherry from grape. Mike asked them to change her back to grape. Since the change, she hasn’t thrown up.

Today Jesse has eaten breakfast and snack. She is playing well and seems to feel a little better. But in the worrying of the weekend, I forgot to get Easter eggs and treats for Chris’ class. I am sure that this is not going to be good when Chris gets home. She already feels left out sometimes because of the worrying we do over Jesse.

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April 1st Chili’s in Williamsburg helps conquer childhood cancer. Bring in the flyer above and 15% of your meal will be donated to help fight childhood cancer through St Baldrick’s, the #1 private funder of childhood cancer research in the USA.

They have funded several research studies at CHKD, and I feel this is a great way to tell her doctors thank you. Plus I asked CHKD how I could raise funds for the oncologists, and they suggested St Baldrick’s.

If you can’t make it, please consider donating to the link above. $1 will go a long away to helping researchers find ways to stop and cure cancer. Thank you!