Consultation with the surgeon.

On Thursday I received a call from surgery to set up a consultation with the surgeon and they gave me the name of a different surgeon. I was confused because this was not the surgeon we've worked with since the end of May. It isn't the surgeon we've heard great things about like: he's ranked one of the top 4 pediatric surgeons for removing Neuroblastoma tumors in the nation, he's an expert at working with blood vessels, or, if it were my child I would want him to do the surgery. So for the last 2 months we have felt confident in Raylee's surgeon as the hospital staff raved about him. I had also researched him on-line and we felt confident about his ability and skills even though the 1st time I met him he said he wouldn't be able to remove the entire tumor. I also felt confident the Chemo would work to shrink the tumor so he could remove all of it. Hearing the news Raylee's surgeon was going on vacation for 2 weeks and that's why he wouldn't be able to do the surgery was not good news. It was upsetting to us and our confidence was gone...there always seems to be something to prevent ease. The change in surgeons wasn't surprising just really frustrating. We were also upset Raylee's oncologist didn't call us to inform us about the change in surgeons immediately, especially since we just met with her on Tuesday. Jerry called her and let her know how we felt and that we were upset. She apologized none stop for not calling us immediately and stated the new assigned surgeon was equally qualified. She stated all of them felt as if the tumor should be removed ASAP. She stated after we met with the surgeon if we didn't like him, get a good feel for him, or didn't have confidence in him she would fire him from doing the surgery and we could wait for the other one to return. The stress was overwhelming--how do you decide? Is this Heavenly Father's way of changing things because He knows who would do the best job? If something goes wrong will we blame ourselves for not waiting for the original surgeon, or, if we waited and something went wrong with the original surgeon will we blame ourselves for not allowing the new assigned surgeon to do the surgery?

We met with the new assigned surgeon on Friday. He was as young as the other and just as friendly (age 44). These surgeons are not how I expected them to be. They are not arrogant nor do they treat you as if they know more than you. He didn't treat us like he knows what's best...he sat with us, explained things, allowed us to ask all the questions we had, assured us he would take care of Raylee, and gave us his phone number....not an assistants number but his. I also researched this surgeon on-line as I have all the medical professionals working with Raylee. I want to know how much experience they have, if there's any negative information on them, what their reviews say, where they went to medical school, where the have practiced medicine, etc. I found out the new assigned surgeon has 19 years experience, the head of pediatric surgery, ranked one of the top 4 pediatric surgeons in our state, has a medical license in two states, and he works really close with our original surgeon. He assured us he has followed Raylee's treatment along with the other surgeon since Raylee was first diagnosed and they have planned to perform her surgery together. Then it just happened that when Raylee needed the surgery one of them was going on vacation.

After meeting the surgeon both Jerry and I feel confident in his expertise. After he looked at Raylee's belly his office staff came to play with her. They played with some toys and spoiled her with lollipops, stickers, and books to take home. Every where Raylee goes in the hospital the staff love her, call her a sweet angle, and load her up with all kinds of prizes, toys and treats to take home. Seems whenever we go to the hospital we leave with more and more stuff. Anyway the surgeon showed us her latest CT scan on the computer and explained the details of resecting the tumor. He has an entire day blocked off for Raylee's surgery. Depending on what he has to do to remove this blasted tumor will determine the length of the surgery. It can last 5 hours or even 8-to-12 hours. If they are not able to remove it through her lower abdomen area they will need to go through her bottom, which will take a really long time. This also means Raylee may have a colostomy bag for at least 2 months. He said resecting tumors takes time and they have to go really slowly. There will be 2 surgeons in the operating room and the other is also one of the top 4 pediatric surgeons in our state. There are 8 pediatric surgeons that are able to do this surgery and Raylee's oncologist told us she will not let 4 out of the 8 touch Raylee because they are not the best. I like her oncologist, she seems to be very protective for her patients and tells other medical staff the way it is.....she has a pull in the hospital and seems to have the ability to get her way. We are luckly Raylee is her patient.

I am terrified for this surgery. Looking at the CT scan you can see why it will be extremely complicated to resect. The surgeon said he is going in it to remove all of the tumor but if at any point during surgery Raylee's life or limbs (legs) are in jeopardy he will stop. The arteries and major vessels that go to the legs and pelvic area are side-by-side with the tumor. The tumor sits on her tail bone and if she had a rectal exam it could probably be felt. So it is on the tail bone, behind her rectum, pushing her rectum and bladder up--they say it is the size of a grapefruit. It could be growing within the rectum wall and if the rectum wall is too thin now, she will also have a colostomy bag so it can heal. Since it is a cancer that originated from neuroblasts, or baby nerve cells, there could be nerve damage to her rectum and bladder already. These things we won't know until the tumor is removed and her ability to go potty is evaluated. It sits in her pelvic outlet, picture a baby in the birth canal....that is where a lot of the tumor is. The surgeon may use the same incision from her 1st surgery which goes straight down by her belly button. He said it would be easier to go across like a cesarean incision and it would be the mother of all cesarean incisions. The original surgeon said he wouldn't be able to remove all of the tumor but this surgeon said he can as long as it doesn't jeopardize Raylee's life or her legs....I liked his optimism and confidence.

The feeling of your baby having major surgery is and empty feeling but extremely heavy at the same time. My thoughts are so chaotic right now as I have a lot of questions, fear, anxiety, doubt, all at the same time and it is hard to focus. At the same time it feels as if the earth is pulling me down and every physical movement seems to be heavy and take a lot of effort. I don't want to go in this emotionally and physically exhausted but I'm afraid its too late for that. Right now I just want Raylee and Jorja to enjoy themselves. At home this often means letting them do what they want. I hate the feeling of fear especially when it concerns my baby. She will probably have blood transfusions during the survey because she will bleed a lot; the surgeon said when they remove the tumor it will ooze. He said if they need to they can split the tumor in pieces as it isn't a tumor or cancer that is toxic to be split. She will be in ICU for the following day. I apologize for this blog being late but it took sometime for this to sink in. I still feel extremely numb and helpless. I want to be hopeful and have the faith needed to be strong....I hope my weaknesses will allow me these things.
P.S. Surgery is this coming Wednesday.