Hello to Everyone

Hello to Everyone,

This is Sharon, Shannon's mom.  Our family just wanted to let everyone know after much research the past year regarding supplemental/alternative therapies for Curtis, he would like to try the plan outlined below in addition to his ongoing Chemo.  Since most of these alternative therapies are not approved by the FDA, insurance companies do not cover the costs.  We are providing a link to a PayPal account for Curtis for anyone who would  like to help with the funds needed as outlined below.  

We would like to thank everyone for their amazing love and support over the past year!  I know Curtis and Shannon are deeply touched and forever grateful to everyone.  Please keep them in your prayers as they move forward in their amazing journey.  

The regimin includes: Cesium Chloride ($190/mo), Methylate ($70/mo), Cleansing Enzymes ($72/mo), Probiotics ($24/mo), Protandim ($80/mo), Vitamin D ($11/mo), and a product called Oxygen4Cells ($33/mo).

Here is some additional info on the products above.

We will have a donation link on the blog within the next few days if you would like to make a one time or monthly donation to help with their expenses.

http://www.healthy-living.org/, http://www.oxygen4cells.com/, http://www.cancertutor.com/Cancer/Alkaline.html

Update- Partial chemo started

Sorry for the delay in updating.. Since the last post, Curtis' bilirubin went up to 11. That day we decided to have them put in two additional stents in the hepatic ducts (right and left). The surgeon was afraid that the bilirubin was staying high because Curtis had damage to his liver from the cancer. We decided to go ahead with the two additional stents last Wednesday.. I think.. By Saturday, his bilirubin had gone down to 8. Last Monday it was down to 4. So the stents are working!! Hopefully, the bilirubin will be down enough by Monday so he can have the full Folfiri and Cetuximab. Last Thursday they were able to start him on the 5fu, Leucovorin and cetuximab and yesterday he had another dose of Cetuximab. He is doing very well with this round of chemo. Things are starting to calm down a bit, his pain is under control and he is finally able to sleep, and the edema (swelling) in his legs and feet is slowly going down as well. We are currently looking into some alternative treatments with possibly Cesium chloride along with other supplements to try and keep his immune system up and keeping his cells oxygenated. It is very expensive though, so we are trying to find out of it is even a possibility at this point.

No chemo today.. Bilirubin up even more

Curtis' bilirubin is up to 8.9 this morning. The plan is that he will go in for the "stent procedure" again (endoscopy) to try and figure out if the stent they put in had moved, if there is a new blockage, or if a larger stent is needed.. Or some suprise we don't yet know about. The plan so far is to have this done Wednesday. Curtis has now been 6 weeks without chemo. This is making us all nervous. You wouldn't ever think that you would need to pray that someone could just get their chemo.. This is getting to be very frustrating to us.. He had a really rough night last night vomiting through the night and this morning. But, he has been able to eat since about noon today and keeping it down. We wanted chemo to be on Mondays, since it is weekly now, we thought it would give him more quality time with Tavner on our weekends, but it might take a few weeks to get to that schedule. Hopefully, he can start the new chemo later this week if his bilirubin drops enough. They like it to be less than 3 for the Irrinotecan chemotherapy.

Bilirubin back up.. Port back in Friday

We found out today that Curtis' bilirubin is back up. It was down to 2.1 after the stent was put in and it is now 6.4 today. They first scheduled an ultrasound to try and see if there was another blockage or if something happened with the stent, but after speaking to the surgeon, they decided to re-draw the bilirubin level on Monday and see if it has improved. The surgeon thinks that the bilirubin might be elevated because it was taken too soon after the attempted gallbladder procedure. The main issue with the bilirubin is one if his new chemotherapies Irinotecan, is excreted with bilirubin and if the bili is too high, the chemo won't be excreted proparly and will accumulate in the blood. Not good. The plan so far is for him to get his port back in Friday and some of the chemo Monday, and if the bili is down below 3ish, they would consider adding the Irinotecan. He is actually feeling well, mostly just tired. We got to spend some quality time with Tavner today, so that lifted both of our spirits. We are moved back into our house in West Valley. We had to rent it out after Curtis was diagnosed because he has been unable to work. It has taken some time to get moved and unpacked especially with all extra activities lately, but we made it thanks to wonderful family and friends. I am having to take a break again from nursing school. I will be set back 3 months and won't graduate until Dec 2012 now, but I will be able to spend time with my hubby, Tav and the dogs and settle in a bit. I had the surgeon take some pics of the tumors in his gallbladder to post next week..

Surgery did not go well..

Within 15 minutes of taking Curtis back to surgery yesterday, the surgeon came to the waiting room to find me. There has been a disagreement of what exactly was wrong with the gallbladder between the surgeons and the oncologists. The oncologists thought it was cancer, the surgeons thought it was an infection. The surgeons did two small incisions and looked at it with a camera and there is extensive cancer growth not only in his gallbladder, but through-out his abdomen. The tumors in and around his gallbladder and wrapped around the blood supply to the liver, making the procedure in-operable. The surgeons and oncologists are having a meeting this morning to discuss what the next step will be. I will update as I get more information.

Surgery today

Surgery to have Curtis' perforated gallbladder removed is today around 3:30pm at the University of Utah Hospital. Dr. Glasgow will be doing the surgery and is hoping he can do it laparoscopically. He thinks he has a 50% chance of doing it this way versus open. If it is done open, Curtis will be in the hospital all week. I will update when we know how the surgery went. Thanks for all the love and support :)

Many Updates

Last week Curtis noticed his port looked red and puffy and was having some pus discharge. We went to the clinic and we noticed on our way there that his eyes looked a little yellow. When we got to the clinic, they looked at the port, and had a nurse from surgery come and take a look at the port as well. It was decided that his port was infected and needed to come out immediately. We went over to the U of U hospital and saw Dr. Nelson (who originally put the port in) and had it removed. Labs were done to see why his eyes were looking yellow. They labs came back with an elevated level of bilirubin in Curtis' blood. We were scheduled to get an ultrasound at 8am the next morning. The ultrasound showed an extremely enlarged gallbladder with normal findings on the spleen, liver, and kidneys. We went back to Huntsman to review the results. The surgeon decided they needed additional imaging and sent us to have an MRCP done which is: Magnetic resonance cholangiopancreatography, in medical imaging, a technique to visualise the biliary tract and pancreatic ducts. This was a 12 hour day by this time.. The following day we came back to Huntsman to get the results and the preliminary report looked like there was tumor in the gallbladder. They decided they thought it would be best to put a stent in his common bile duct to try and drain some of the bile into his intestines. Here is a pic of the gallbladder and biliary ducts:


We were called back that afternoon and told we needed to come to the hospital immediately to get started on antibiotics because the final report from the MRCP came back and the gallbladder has ruptured. A ruptured gallbladder untreated can cause peritonitis, sepsis and death. We came to the hospital and they decided to go in and put the stent in the common bile duct to release some of the pressure of the gallbladder and avoid further damage. The stent was put in around 6pm Monday evening, 1/25/12. Curtis was in severe pain before the procedure starting several days last week. Once the stent was put and the pressure was released, the pain and his bilirubin levels started to drop. He is still in the hospital and will be released this morning. The plan is to have Dr. Glasgow due surgery to attempt to remove the gallbladder laparoscopically, if possible on Monday 1/30/12. The gallbladder will be biopsied to confirm cancer, and if all goes well, we are hoping that he will be able to start his new chemo folfiri and cetuximab two weeks following surgery. His last PET scan 3 weeks ago showed growth of the tumors in his lungs and new tumors growing in his lungs as well. We are not sure when the port will be replaced (Curtis refuses to get a PICC line) we are hoping they can do it with the gallbladder procedure, but it may need to be a separate surgery in the next week or so.

Last week we began to move back into our house that we had to rent out for a year following Curtis' diagnosis last December. It feels nice to be in our home again.. 

There hasn't been much work done on the Airstream as of yet, if Curtis feels up to it, we hope to begin working on it in the next month.