Meeting with the Surgeon

We met with the surgeon that will be taking care of Haven in a couple of weeks today. It was a long process/meeting. First we waited for 2 1/2 hours to see him - after they placed us in the fluorescent lit WHITE room. After the first hour I believe we all started going slightly insane....especially all locked in a room together. I started wandering the halls looking at posters of The Hulk and Wonder Woman, Haven kept clicking a pen that drove me crazy and Kris kept telling us both to calm down.

I personally have to say one thing that is really irritating to me is that every nurse we talk to always asks us why were in. When they start the conversation off like that I instantly get upset. If I'm coming in to a cancer department or a surgical building I believe you should know why I'm there or get someone who has read my file. Don't make me go through the entire 2 year history each time.

So the surgeon finally came in to review the MRI and report and what the surgery will entail. We went through EVERTHING.....it was a long meeting. We did get to see the actual tumor and it was shocking to us and the surgeon could only say that it will be "interesting".

If you can picture it: The tumor is shaped like a kidney bean (which is extremely rare) and is actually "glued" on to the spine and cradling the Aorta. The Vena Cava is wrapped around the tumor on the left side and has actually grown with the tumor. These are the two major arteries that run to and from the heart.

Normally a Neuroblastoma tumor is a ball on one side and generally an easier surgery. Haven's is shaped like a kidney bean and actually wraps around the Aorta 1/2 way. With this the surgeon is unsure he will be able to remove all of the tumor and will not sacrifice anything vital to do so. He will not be able to confirm what he will do in surgery until he can get inside and see it. There are two ways: 1. move the arteries away from the tumor to take it out; or 2. take out as much of the tumor without moving the arteries - leaving a small section behind to be desolved by chemo.

The tumor is on the spine but is confirmed NOT in the spinal column. The nerves are slightly weaved in to the tumor so he will not be able to remove the tumor from those. He will remove as much as possible without touching the nerves.

She is also confirmed to show no signs of Metastasis - a 2nd form of cancer that is sometimes caused by Neuroblastoma.

Her tumor shape is extremely rare - the doctors have already met with two large board members that only work on tumors and none of them have had a Neuroblastoma like this. It will be a tricky surgery.

The incision is to be 5 inches long and cut vertically in the left side of her abdomen. They are unable to go horizontal at bikini line or through the belly button because they need a lot of room to get in there. This tumor produces a hormone that causes weight gain and because of that she has a lot of layers of fatty tissue around her. Thus increasing the difficulty of the surgery and healing process could be slightly longer. They will not have external sutures or staples. Everything will be internal and she will not need to come in to have anything removed. Due to fatty tissue we have a higher risk of infection so we will receive detailed instructions on cleaning and bandaging the wound as he assures us the fat will cause it to have a bit of puss.

As for the tube for her future treatments of chemo and IV's they are still trying to decide if she will have port or the tube. If she has the tube (due to fatty tissue) it will be about 7 inches long. They can either put it in her neck or in her chest - which hasn't been decided yet.

He is guessing that the entire surgery will be about 4 hours (they can't keep her under too long) but I have thoughts that it will actually be longer. mIBG is being done the 24th and 25th of January. Right now it looks like surgery will be right after that. There are a few more tests we must do before surgery and a few more meetings.

As for how Kris and I are doing - we are ok I guess. We're tired and a bit worn out. By the time we get through the doctor meetings we have to get back to work or finish out the day. We don't know if it's day or night sometimes. Haven has been sleeping much better - my parents bought her a new mattress that's really soft and Kris' mom and Simon got her some princess sheets and she's loving them.

Thank you everyone for calling or emailing or texting. We're here --- just sometimes a little busy. Grandma Virginia has been staying with us and will be here through Haven's birthday. She's been a great help to Kris and I and Miss Haven.

Sorry for the book it's been a big day. Love to you all. - M