Go away big ugly tumor! And never come back again!

This is Melanie. Leslie said I could let you know what is going on. I went to Logan Thursday night to stay with the kids so that Hal and Leslie could go to the hospital at 5:00 a.m. on Friday. Stephanie and Mom spent the day at the hospital with Hal. A big thanks to Kathleen Parrish and Kendra Burton, who also paid a visit. The surgery was suppose to start at 7:45. She finally went in at around 11:00 a.m. The surgery went very well and Dr. Orlandi feels like he was able to get the whole tumor. There was one little complication. The tumor had grown into the bone that covers the spinal column. When the doctor removed it, it put a hole in the bone and spinal fluid was leaking. He was able to put a membrane over the hole. The recovery will be a little tough though. She is not allowed to sneeze, cough, bend-over, lift anything or have her head below her heart at all or she could damage that membrane. This is going to be very tough for her especially with her little girls. They are busy, active young ladies and demand a lot of attention. Leslie needs to rest and this will make it really hard for her.
Stephanie came to Logan after the surgery and helped me with the kids. We discovered that we are a great child care tag-team. Stephanie is going to take the little girls to Salt Lake until Wednesday then I will pick them up and bring them to Pocatello. We hope this will help Leslie heal and get a lot of rest. Hallie Kate, Carson and Mason should be big helpers for her. Here are some pictures I took over the weekend of the kids and Leslie when she got home from the hospital. Thanks to Jan, Debbie and Janae for the beautiful flowers!

Update-3/18

It's done! Dr. Orlandi is confident that he was able to remove the entire tumor (will know for sure in a couple of months). Just as he suspected may happen, there was a small spinal fluid leak when he removed the tumor from the bone in front of the brain. Somehow he managed to "glue" a membrane down to cover the leak and now I get the spend the next 3 weeks hoping it holds. I am not to bend or lift anything heavier that a gallon of milk. They don't even want me to suck through a straw...but IT IS DONE! YEAH! We confident that I will heal a bit more every day and that we are nearing the end of this jouney. The love and support shown me and my family was overwhelming. Much love.

Update-Wednesday march 14

After the conference call, in which Dr. Orlandi explained what needs to happen during my surgery, Dr. Hunter (the doctor chosen by the ins. co. to perform the surgery) replied, "Oh, I can't do that." ...So now that the ins. co. realizes Dr. Orlandi truly is the only option, they have agreed to pay for the operation in full (not sure why that conversation couldn't have taken place a couple of weeks ago). Hallelujah! Prayers are answered. We are on for Fri. and I have a very calm feeling about what will happen. Thanks for all your prayers and support. 

Update-Tuesday march 13

Get this...we will not get an answer about whether or not the insurance company will cover my surgery until tomorrow...after their med. dir. has a conference call with Dr. Orlandi at 9:00 A.M. Therefore, I had to cancel the 8:00 A.M. MRI (and hope that if  Dr. Orlandi is approved we will be able to get the MRI done sometime before Fri.) We are hoping to have an answer before the P.E.T. scan @ 10:30 A.M. (it would be nice knowing if it will be covered 100% or if we'll have to borrow $7,000-$10,000 to pay for it.) Absolutely the craziest thing I have ever seen. talk about an emotional rollercoaster. Hal and Leslie

Insurance battle

And so begins the fight with the insurance company... they've agreed to pay for the surgery, but not for Dr. Orlandi. They "think" they can find someone in-network who can do the operation. Great... the "think" they can find someone who will not leave me blind, paralyzed...or dead. Call me selfish, but I'd really like a doctor who has actually done this before. According to my doctors, Dr. Orlandi is the only one (in a multi-state area) who can do this type of surgery. Please pray that within the next day or two my insurance company will decide that my life is worth a few extra dollars. If we can work things out with the insurance company, I will have an MRI and PET scan at the Huntsman Cancer Institute next Wednesday (March 14) and the surgery will be on Friday (March 16). I'll let you know what happens. Love you all.
Leslie

Update: 2/29/12

Last Thursday Hal and I met with Dr. Orlandi at the University of Utah hospital. He has decided to surgically remove the tumor from my head. It is located in such a delicate place that Dr. Orlandi is literally theonly Dr. outside of UCLA Medical Center who has the expertise to perform such a surgery. The tumor is located around the optical nerves and extends down to the base of the skull. The major concerns are the possibility of nipping the optical nerves (which could result in vision problems or even blindness) and spinal fluid leaks, which could result from removing the tumor and making the effected bone separating it from the brain too unstable. He also said that there is a pocked section near the bottom which may or may not be cancerous (It may be pocked as a result of radiation). If it cannot be removed, more radiation will need to follow. Yeah... it's a pretty big deal. However, on the bright side, both Hal and I felt very much at peace with Dr. Orldandi. We know we were led to him and, therefore, feel confident that things will turn out alright. The surgery will be on Friday March 16 and all prayers are appreciated (not just for me, but for Hal and the kids, and Dr. Orlandi too). Love you all. 

Update from 1/31/12

Well, unfortunately we are not done with this thing. We learned yesterday that, although the radiation did shrink the tumor, it is not gone, so we continue on this journey. We feel discouraged, but know there is a reason for all of this. Officially, I have a Solitary Plasma Cytoma in the Clavis (bone) of the Sphenoid Sinus (How many of you can say that?). I will go back to the Cancer Center tomorrow for additional blood tests to double check and make sure this thing has not spread, then next Monday we are on our way down to Ogden for another PET scan to see if the tumor is growing. If it is not, the doctor will just watch it closely. If it is growing I will be sent to a specialist in Salt Lake who may be able to remove it. The problem is that it is quite far back in the head in a very precarious place (exactly between the optical nerves). What an adventure this life is turning out to be. Trying to keep the faith. Love you all.