This picture was taken just before Curtis passed.. Thank you all for your love support and prayers.
Our family
Curtis and Tav
Saturday, June 2, 2012
So long my dear husband..
We said goodbye to my wonderful husband at 12:30 today. He had a long, rough road, but was very strong and encouraging. The funeral/viewing will be on Wednesday. The obituary should be in the Tribune Tuesday. He was a wonderful husband, son, uncle, brother and father and will be missed!
This picture was taken just before Curtis passed.. Thank you all for your love support and prayers.
This picture was taken just before Curtis passed.. Thank you all for your love support and prayers.
Tuesday, May 22, 2012
Bowel Obstruction, 24/7 Oxygen Updates
Sorry I haven't updated in a while... We have been very busy lately, I have been trying to get more hours at work to try and get our bills caught up while still going to school and Curtis has been having a really hard time keeping his energy levels up and trying to eat as much as he can tolerate.
About a month ago, Curtis' bilirubin shot up to 4.9, his eyes were yellow and his skin was quite yellow also. We called the surgeon who put his other 4 stents in his biliary ducts and he wanted to go in and take a look at them. Before the procedure, his bilirubin went down, but the surgeon still wanted to go take a look to make sure one of the stents wasn't partially blocked or if there was another area that needed to be stented. When the surgeon went in, all the stents were open, but he noticed a narrowing in Curtis' small intestine just after his stomach. The surgeon said that he wouldn't be surprised if this became fully obstructed in the future, but it could be fixed with a stent as well. A few days after the procedure, Curtis started vomiting, having abdominal distention, and felt very bloated. He was not able to keep any food or liquids down. We went to the hospital and he was admitted for a bowel obstruction. They kept him for 5 days and then put the stent in to try and open the bowel. He had a very difficult time getting adjusted to his new diet of eating very soft, cooked, and wet foods. He seems to do pretty well for a few days, but it seems to either slow down or get clogged up every now and then (such as the last few days).. We have been very fortunate to have people from the church come and mow for us, and some women from the church have been bringing Curtis meals on the weekends when I am at work.
Oxygen..
Another recent issue we have come across is Curtis' oxygen saturation has been low. Around 82ish on room air (no supplemental oxygen). His oxygen should be at least 90. Most people are between 97-100%. This can cause fatigue which he pretty much always has. The low oxygen is because he has had increased tumor activity in his lungs. He has tons of small tumors that go from the base of both lungs to almost up to the top of his lobes. These are quite a bit worse than they were even a month ago. They decided he needed to be on oxygen 24/7 now. We have an oxygen concentrator at home that sits in the living room and a 50 foot hose that follows him around the house. When he wants to leave the house, he has to get his oxygen tank and load it into the car/truck. He has been very weak lately and has a very difficult time doing this.
Falls..
He has had 3 falls this month as well. It seems like his legs aren't strong enough to get him where he is trying to go, or they aren't strong enough to catch him if he stumbles. I went out in the driveway two weeks ago and he was lying in the driveway with a very large goose egg on his head. Apparently, he stumbled and wasn't strong enough to catch himself and hit his head, shoulder and hip on the concrete.
He has a difficult time driving and will only go short distances if required. We may need some help with transportation.. Sandy, his mom, is usually available to take him to chemo, but if anyone has Mondays off and would be willing to take him (it is usually an 8-10 hour day), let me know in the event that Sandy is unavailable.
Sorry for all the crappy news.. We are planning a trip with my family to Lake Powell at the end of June during my school break. We are very excited!
About a month ago, Curtis' bilirubin shot up to 4.9, his eyes were yellow and his skin was quite yellow also. We called the surgeon who put his other 4 stents in his biliary ducts and he wanted to go in and take a look at them. Before the procedure, his bilirubin went down, but the surgeon still wanted to go take a look to make sure one of the stents wasn't partially blocked or if there was another area that needed to be stented. When the surgeon went in, all the stents were open, but he noticed a narrowing in Curtis' small intestine just after his stomach. The surgeon said that he wouldn't be surprised if this became fully obstructed in the future, but it could be fixed with a stent as well. A few days after the procedure, Curtis started vomiting, having abdominal distention, and felt very bloated. He was not able to keep any food or liquids down. We went to the hospital and he was admitted for a bowel obstruction. They kept him for 5 days and then put the stent in to try and open the bowel. He had a very difficult time getting adjusted to his new diet of eating very soft, cooked, and wet foods. He seems to do pretty well for a few days, but it seems to either slow down or get clogged up every now and then (such as the last few days).. We have been very fortunate to have people from the church come and mow for us, and some women from the church have been bringing Curtis meals on the weekends when I am at work.
Oxygen..
Another recent issue we have come across is Curtis' oxygen saturation has been low. Around 82ish on room air (no supplemental oxygen). His oxygen should be at least 90. Most people are between 97-100%. This can cause fatigue which he pretty much always has. The low oxygen is because he has had increased tumor activity in his lungs. He has tons of small tumors that go from the base of both lungs to almost up to the top of his lobes. These are quite a bit worse than they were even a month ago. They decided he needed to be on oxygen 24/7 now. We have an oxygen concentrator at home that sits in the living room and a 50 foot hose that follows him around the house. When he wants to leave the house, he has to get his oxygen tank and load it into the car/truck. He has been very weak lately and has a very difficult time doing this.
Falls..
He has had 3 falls this month as well. It seems like his legs aren't strong enough to get him where he is trying to go, or they aren't strong enough to catch him if he stumbles. I went out in the driveway two weeks ago and he was lying in the driveway with a very large goose egg on his head. Apparently, he stumbled and wasn't strong enough to catch himself and hit his head, shoulder and hip on the concrete.
He has a difficult time driving and will only go short distances if required. We may need some help with transportation.. Sandy, his mom, is usually available to take him to chemo, but if anyone has Mondays off and would be willing to take him (it is usually an 8-10 hour day), let me know in the event that Sandy is unavailable.
Sorry for all the crappy news.. We are planning a trip with my family to Lake Powell at the end of June during my school break. We are very excited!
Monday, March 12, 2012
Donation link up and running
The donation link is now set up. There is a $50 maximum per transation. You are also welcome to send donations directly to Curtis at 3279 Waterleaf Way, West Valley, UT 84128
Saturday, March 10, 2012
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.
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.
Thursday, February 23, 2012
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.
Monday, February 6, 2012
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.
Wednesday, February 1, 2012
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..
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