Wednesday, September 12, 2012
Come and Celebrate Nathan's Life and Legacy
Greetings, friends and family. I just wanted to take a moment to remind everyone that this Saturday at 1pm we will be honoring Nathan by sharing stories, reminiscing over pictures, and loving each other through this difficult time of losing Nathan. Nathan was very dear to many people and our families look forward to getting to know every one of you. We would also like to encourage people to bring their favorite side dish or finger food or dessert or any other food category to the gathering. The only food item we are restricting is pork. We thank you all for taking the time to celebrate our amazing Nathan with us. The address of the event is 878 Filbert Avenue Chico, CA. Take care, loved ones.
Wednesday, September 5, 2012
Nathan's Obituary is online at:
http://www.nbcfh.com/obituaries/index.php?id=567&p=&search=
It will appear in the Chico Enterprise Record and the San Jose Mercury News tomorrow.
http://www.nbcfh.com/obituaries/index.php?id=567&p=&search=
It will appear in the Chico Enterprise Record and the San Jose Mercury News tomorrow.
Hi, We are planning the following events to honor and remember Nathan.
1. A short grave side service will be held at Chico Cemetery on Saturday September 8 at 3PM. Following the service refreshments will be served at Nathan's parents home, 878 Filbert Ave Chico, CA.
2. A celebration of Nathan's Life will be held at Nathan's parents home at 878 Filbert Ave Chico, CA starting at 1 PM on Saturday September 15. Bring your stories, pictures and anything else you wish to share about Nathan. We will provide plenty of food and drink, and tissues.
Looking forward to seeing you!
Rich, Vicki and Melissa
Thursday, August 30, 2012
Hi, Nathan's Dad again. Nathan died at 5:10 AM this morning. He came home to yesterday morning under care of Enloe Hospice. During the last week his lucid periods had become more brief and unpredictable. At one point yesterday when Vicki and were positioning him in the hospital bed Nathan kicked his leg at just the right time to make our efforts successful. I said something about thinking he was not tracking what was going on. Nathan smiled his crooked little smile and gave me that knowing look for the last time. We are all going to miss this guy so much. I will do another post once we sort the funeral arrangements.
Sunday, August 26, 2012
HI this is Rich, Nathan's father doing my first post. Many thanks to Melissa for creating this blog and keeping it up. Melissa is under an incredible load right now with school starting for the kids and herself in addition supporting Nathan, so I am trying to fill in. As you will see, I am a poor substitute in the writing department, but here goes.
When Nathan was discharged from Stanford hospital on July 30 we were offered an apartment on the Stanford Hospital site to allow us to finish Nathan's 2 week radiation treatment. It worked out really well with Nathan and Vicki each with a single bed in the one bedroom and Rich sleeping on the floor in the living room. Nathan did point out that it was very strange to live in such close quarters with his parents again. The clear benefit of the on campus location was being able to make 8am appointments for antibiotic and other treatments with no problem. Nathan was eating pretty well and did not have any significant nausea issues. We managed several outings including a birthday celebration dinner with Nathan's friends from Sacramento and Bay Area, and visits from aunts and uncles on both sides of the family. Melissa and the kids came back for a visit August 5th - 9th. We found a great park for the kids and had a good visit.
Nathan hit one serious setback during this time. His blood levels of the antibiotic vancomycin when up into the danger zone. When this happened several of his labs that had been normal or improving starting moving in a negative direction. His oncologist caught the change and took quick action to stop the vancomycin. Nathan suffered some kidney damage as indicated by his elevated Creatinine levels. This was followed by fluid accumulating in his legs. It is not clear exactly what the cause and effect relationships are in this sequence of events. Nathan's liver labs started heading back in a positive direction in toward the end of the second week of our stay. We headed back to Chico on on August 10th.
The goal of this return to Chico was to get Nathan's bilirubin levels down to 5 mg/dL so that he would have a chance of tolerate the standard chemo regime for cholangiocarcinoma. We had gotten very close to this bilirubin level once while at Stanford on July 28, just after we started radiation, but before the vancomycin issue. We left Stanford with a bilirubin level of 8.0 and a down ward trend. We were optimistic that his home environment would allow the downward trend to continue. Some of this confidence came from the progress Nathan made during his last stay at home after the UCSF drains, but before the Stanford drains. In the last week before he was admitted to Stanford his bilirubin level fell from 13.8 to 9.3. and Nathan appeared to gain back some of the weight he had lost and seemed to have a higher energy level.
Unfortunately we did not have the same outcome this time. Nathan started showing considerable fatigue after arriving home. His appetite fell off in-spite of Melissa's best efforts to encourage him to eat and drink. On Friday evening August 17. Nathan started vomiting and Melissa took him to the emergency room. He was admitted to the hospital with dehydration, an elevated white blood cell count, and pneumonia. They provided IV fluids and antibiotics. His white cell count came down quickly, but was replaced with persistent nausea and ascites, the accumulation of fluid in the abdominal cavity. He has had the ascites fluid drained twice, and the plan is to put in a permanent catheter so it can be drained without the pain of a needle insertion each time. Nathan is showing some mental symptoms that are typical of late stage liver cancer. We fist noticed it in the Stanford outpatient period. Nathan would speak and make hand gestures when he slept. Now he is having hallucinations when he is awake. He is still self aware enough to realize that he is seeing things when you point it out, These symptoms are usually caused by high ammonia levels in the blood, but his ammonia levels are in the normal range since he started taking a medication to address this issue. We are not sure what the cause of the mental symptoms. We are beginning to suspect that the cancer is spreading.
We are working with a team at Enloe to plan for care for Nathan at home. The tentative plan is to move Nathan to his parents house some time this week. Thanks to all of you who are praying and thinking positive thoughts for Nathan.
When Nathan was discharged from Stanford hospital on July 30 we were offered an apartment on the Stanford Hospital site to allow us to finish Nathan's 2 week radiation treatment. It worked out really well with Nathan and Vicki each with a single bed in the one bedroom and Rich sleeping on the floor in the living room. Nathan did point out that it was very strange to live in such close quarters with his parents again. The clear benefit of the on campus location was being able to make 8am appointments for antibiotic and other treatments with no problem. Nathan was eating pretty well and did not have any significant nausea issues. We managed several outings including a birthday celebration dinner with Nathan's friends from Sacramento and Bay Area, and visits from aunts and uncles on both sides of the family. Melissa and the kids came back for a visit August 5th - 9th. We found a great park for the kids and had a good visit.
Nathan hit one serious setback during this time. His blood levels of the antibiotic vancomycin when up into the danger zone. When this happened several of his labs that had been normal or improving starting moving in a negative direction. His oncologist caught the change and took quick action to stop the vancomycin. Nathan suffered some kidney damage as indicated by his elevated Creatinine levels. This was followed by fluid accumulating in his legs. It is not clear exactly what the cause and effect relationships are in this sequence of events. Nathan's liver labs started heading back in a positive direction in toward the end of the second week of our stay. We headed back to Chico on on August 10th.
The goal of this return to Chico was to get Nathan's bilirubin levels down to 5 mg/dL so that he would have a chance of tolerate the standard chemo regime for cholangiocarcinoma. We had gotten very close to this bilirubin level once while at Stanford on July 28, just after we started radiation, but before the vancomycin issue. We left Stanford with a bilirubin level of 8.0 and a down ward trend. We were optimistic that his home environment would allow the downward trend to continue. Some of this confidence came from the progress Nathan made during his last stay at home after the UCSF drains, but before the Stanford drains. In the last week before he was admitted to Stanford his bilirubin level fell from 13.8 to 9.3. and Nathan appeared to gain back some of the weight he had lost and seemed to have a higher energy level.
Unfortunately we did not have the same outcome this time. Nathan started showing considerable fatigue after arriving home. His appetite fell off in-spite of Melissa's best efforts to encourage him to eat and drink. On Friday evening August 17. Nathan started vomiting and Melissa took him to the emergency room. He was admitted to the hospital with dehydration, an elevated white blood cell count, and pneumonia. They provided IV fluids and antibiotics. His white cell count came down quickly, but was replaced with persistent nausea and ascites, the accumulation of fluid in the abdominal cavity. He has had the ascites fluid drained twice, and the plan is to put in a permanent catheter so it can be drained without the pain of a needle insertion each time. Nathan is showing some mental symptoms that are typical of late stage liver cancer. We fist noticed it in the Stanford outpatient period. Nathan would speak and make hand gestures when he slept. Now he is having hallucinations when he is awake. He is still self aware enough to realize that he is seeing things when you point it out, These symptoms are usually caused by high ammonia levels in the blood, but his ammonia levels are in the normal range since he started taking a medication to address this issue. We are not sure what the cause of the mental symptoms. We are beginning to suspect that the cancer is spreading.
We are working with a team at Enloe to plan for care for Nathan at home. The tentative plan is to move Nathan to his parents house some time this week. Thanks to all of you who are praying and thinking positive thoughts for Nathan.
Wednesday, August 1, 2012
Great Nate
I have struggled for the last week or so deciding how I would address this post. So much has happened and it's hard to know where the best place is to start. In partial, this is due to the fact that my emotions have mirrored that of the tidal wave schedule. One day I am completely hopeful and the next day I am a mess of trying to cram and hide my disparity and deny the levity of the situation at hand. Today I choose to be hopeful for the future, and tomorrow and the next day I will choose to do the same because Nathan and my kids need me to be strong. I still don't know where to start with this update because there has been so much great progress in the last 10 days or so, that I just want to shout it out all at once. I am so grateful that I have such good news to share with you about Nathan's progress and his improved health. So, I guess as I am with most things, I will just dive right in and get started.
It seems where I last left off with my last in depth update was an explanation of the issues Nathan was battling with nausea, dehydration, pain management and antibiotics and attacking an infection. I had explained that the decision was made to ween him off slowly from the IV medications and fluids slowly so as not to shock his system. Making this decision seemed to be the right approach in handling the constant two steps forward and one and a half steps back. Before, they would try to take him off IV fluids, pain medications and antibiotics and Nathan would become nauseated. With the more gradual approach of slowly introducing oral pain meds and turning down the fluid IV drip and keeping him on IV antibiotics there was a slow, but steady success. Another great move was putting him on a pain patch as a means to manage his pain. Upon Nathan's improvement and the possibility of him getting discharged approached, there was still the issue of how to keep him on the antibiotics. Many antibiotics can be administered orally, but with the specific antibiotics he has to take it is imperative that he receives them from an IV or some other similar way. Ultimately what they decided to do was give him a PICC line (Peripherally Inserted Central Catheter) and he could inject the antibiotics himself once a day and receive infusion treatment once a day at Stanford on an outpatient basis. Another issue that needed to be dealt with was his drainage bags for his Liver. One of the tumors in his liver is right next to the portal vein in the liver and it was starting to cause problems with the bile drainage. Rather than go in and insert ANOTHER bile drain bag, the team of doctors decided the best way to fix it was to start Nathan on localized radiation treatment and hope that the tumor would shrink enough to alleviate the blockage. While the antibiotic infusion and radiation treatments were available up in Chico, we decided the best thing to do would be continue his care with Stanford Hospital to make sure there was continuity with this treatments. Medical care doesn't always go as planned and we felt that in the event something wrong went up here in Chico at Enloe, Nathan's health could be jeopardized. The unfortunate downside of this, of course, is that he would have to stay down in Palo Alto. His parents, the kids and I had spent several days in Napa and traveling back and forth to the hospital, but the kids and I needed to get back to Chico for a few days. Stanford Hospital was able to put Nathan and his parents in temporary housing during his treatments. The great news was that after 18 days, Nathan was finally getting out of the hospital!!! Being in the hospital that long can bring anyone down, and while Nathan remained his usual wonderful person, it still had some negative effect on his morale. Being out of the hospital would also allow him to have meals that were cooked to his specifications and he would be able to eat them while they were still hot. Since his appetite is not that great at this point, any improvements that can be made to his food is important.
While it is very hard to be away from Nathan right now, I take comfort in the fact that he is getting excellent care by the doctors, his parents, and most importantly, God. I also know that I will be reunited with him very soon and will be able to hold him close to me where he belongs. Yesterday, there was a slight scare with one of the tubes from his drainage bags. When he was flushing the tube out with saline, some of the bile came out from around the site around his abdomen. Nathan's parents took him to see the doctor at Interventional Radiology and after putting him under a mild sedative, they discovered it was only a blockage within the tube and they were able to replace it and send him back to the temporary housing. After the last couple of months, the worse can come to mind and I panicked that something very bad was going to happen. We were relieved to find out it was a relatively simple fix and our decision to keep his care continued down there was affirmed. Had we been up here in Chico, who knows what would or could have happened. Another interesting development has been that Nathan has virtually felt no adverse affects from radiation and says he actually LIKES radiation. At this point, it finally feels like things are heading in the right direction. His test numbers are continually improving, as well. Nathan has kept positive, patient, and inspirational beyond what would ever be expected to be normal, but Nathan is not a normal person. Nathan has always been a very stable, sincere, genuine, patient, understanding, positive person and he has continued to display these traits since the very beginning of this awful nightmare. He has always inspired me to be a better person, but I think everyone could learn a lot from this amazing man. I feel honored that he loves me so much.
Next Wednesday will be the last day of his radiation treatment and they will assess at that point if they want to send him home to Chico for a short period before starting chemotherapy and what will be the next step in his treatment. I have great hopes and expectations that him being home with his family, even if for a little bit, will do wonders for his healing. I especially want to spend as much time with him as possible before the kids begin the school year. I, too, will be starting Chico State in the Fall as a junior. I have struggled with the decision as to whether or not I should continue my education right now in light of the current situation, but I must try my hardest to succeed. It's going to be harder than it was before, but I have an amazing family and partner who support my decision to complete my degree. I also felt that by not going, it would be sending a negative message to my kids. The message I think I would be sending would be: "If something seems to hard to do, don't even try to do it". I need to try for my kids, Nathan and myself. We know there will be many challenges in the future with school, Nathan's illness, comforting the kids and with our finances, but we will battle them as a team.
I want to continue to thank everyone who is praying, hoping, supporting and helping us. I am sorry that I have not been able to thank every one of you individually as I would like to, but please know that your generosity and support do not go unnoticed. Thank you so much and bless you all.
It seems where I last left off with my last in depth update was an explanation of the issues Nathan was battling with nausea, dehydration, pain management and antibiotics and attacking an infection. I had explained that the decision was made to ween him off slowly from the IV medications and fluids slowly so as not to shock his system. Making this decision seemed to be the right approach in handling the constant two steps forward and one and a half steps back. Before, they would try to take him off IV fluids, pain medications and antibiotics and Nathan would become nauseated. With the more gradual approach of slowly introducing oral pain meds and turning down the fluid IV drip and keeping him on IV antibiotics there was a slow, but steady success. Another great move was putting him on a pain patch as a means to manage his pain. Upon Nathan's improvement and the possibility of him getting discharged approached, there was still the issue of how to keep him on the antibiotics. Many antibiotics can be administered orally, but with the specific antibiotics he has to take it is imperative that he receives them from an IV or some other similar way. Ultimately what they decided to do was give him a PICC line (Peripherally Inserted Central Catheter) and he could inject the antibiotics himself once a day and receive infusion treatment once a day at Stanford on an outpatient basis. Another issue that needed to be dealt with was his drainage bags for his Liver. One of the tumors in his liver is right next to the portal vein in the liver and it was starting to cause problems with the bile drainage. Rather than go in and insert ANOTHER bile drain bag, the team of doctors decided the best way to fix it was to start Nathan on localized radiation treatment and hope that the tumor would shrink enough to alleviate the blockage. While the antibiotic infusion and radiation treatments were available up in Chico, we decided the best thing to do would be continue his care with Stanford Hospital to make sure there was continuity with this treatments. Medical care doesn't always go as planned and we felt that in the event something wrong went up here in Chico at Enloe, Nathan's health could be jeopardized. The unfortunate downside of this, of course, is that he would have to stay down in Palo Alto. His parents, the kids and I had spent several days in Napa and traveling back and forth to the hospital, but the kids and I needed to get back to Chico for a few days. Stanford Hospital was able to put Nathan and his parents in temporary housing during his treatments. The great news was that after 18 days, Nathan was finally getting out of the hospital!!! Being in the hospital that long can bring anyone down, and while Nathan remained his usual wonderful person, it still had some negative effect on his morale. Being out of the hospital would also allow him to have meals that were cooked to his specifications and he would be able to eat them while they were still hot. Since his appetite is not that great at this point, any improvements that can be made to his food is important.
While it is very hard to be away from Nathan right now, I take comfort in the fact that he is getting excellent care by the doctors, his parents, and most importantly, God. I also know that I will be reunited with him very soon and will be able to hold him close to me where he belongs. Yesterday, there was a slight scare with one of the tubes from his drainage bags. When he was flushing the tube out with saline, some of the bile came out from around the site around his abdomen. Nathan's parents took him to see the doctor at Interventional Radiology and after putting him under a mild sedative, they discovered it was only a blockage within the tube and they were able to replace it and send him back to the temporary housing. After the last couple of months, the worse can come to mind and I panicked that something very bad was going to happen. We were relieved to find out it was a relatively simple fix and our decision to keep his care continued down there was affirmed. Had we been up here in Chico, who knows what would or could have happened. Another interesting development has been that Nathan has virtually felt no adverse affects from radiation and says he actually LIKES radiation. At this point, it finally feels like things are heading in the right direction. His test numbers are continually improving, as well. Nathan has kept positive, patient, and inspirational beyond what would ever be expected to be normal, but Nathan is not a normal person. Nathan has always been a very stable, sincere, genuine, patient, understanding, positive person and he has continued to display these traits since the very beginning of this awful nightmare. He has always inspired me to be a better person, but I think everyone could learn a lot from this amazing man. I feel honored that he loves me so much.
Next Wednesday will be the last day of his radiation treatment and they will assess at that point if they want to send him home to Chico for a short period before starting chemotherapy and what will be the next step in his treatment. I have great hopes and expectations that him being home with his family, even if for a little bit, will do wonders for his healing. I especially want to spend as much time with him as possible before the kids begin the school year. I, too, will be starting Chico State in the Fall as a junior. I have struggled with the decision as to whether or not I should continue my education right now in light of the current situation, but I must try my hardest to succeed. It's going to be harder than it was before, but I have an amazing family and partner who support my decision to complete my degree. I also felt that by not going, it would be sending a negative message to my kids. The message I think I would be sending would be: "If something seems to hard to do, don't even try to do it". I need to try for my kids, Nathan and myself. We know there will be many challenges in the future with school, Nathan's illness, comforting the kids and with our finances, but we will battle them as a team.
I want to continue to thank everyone who is praying, hoping, supporting and helping us. I am sorry that I have not been able to thank every one of you individually as I would like to, but please know that your generosity and support do not go unnoticed. Thank you so much and bless you all.
Sunday, July 29, 2012
More To Follow...
I apologize for not posting an update recently. Everything has been a little chaotic lately, but I will be returning home very soon and I will make sure to post an update. I will let you know this, however, Nathan's health is improving incrementally and was released from Stanford yesterday, but will be staying in that area for at least a couple weeks to receive radiation treatment. Thank you for everyone's concern, prayers and hope for us; your support does not go unnoticed.
Thursday, July 19, 2012
Hanging On To Hope
So much time has passed since my last blog post, yet for me time has stood virtually still. Sadly, I had to leave Nathan at Stanford hospital last Sunday. It was torture and pain leaving him there so weak and tired, but there is no easy way to balance taking care of my children and the love of my life at the same time. I would be happy if I had the superpower of duplicity, but I read once "to be everywhere is to be nowhere". That is me right now; I feel like am nowhere, but just in survival mode for my sweet, dear Nathan and trying to stay strong for him and my kids. The only one who is omnipresent is God, so I take refuge in that fact. He is there with Nathan in his hospital room watching over him and holding him in the palms of his hands. We all miss him right now, but we know he also is in good hands with the medical staff down at Stanford and his dad is also with him to make sure Nathan has an advocate and voice speaking up for his best interests.
Nathan is still fighting to recuperate from what we thought to be a minor procedure. It seems that his body is so tired and every time progress is made, retreat happens. He had been making great strides on Sunday and Monday with keeping more fluids down and a decrease in nausea, but we had a set back starting on Tuesday when they took away all of his fluids (with the exception of an IV) because the doctors wanted to go in and assess the drain to make sure everything was working properly. They had to take him off of everything taken orally in the event they had to put him completely under. The doctors have also been concerned because his white blood cell count is higher than it should be which could either be a sign of him fighting a bacterial or fungal infection, or just his body recovering from the biliary drain being inserted. The results have been inconclusive. There has been a team of several doctors on the infection control team that have been following this possibility. Right now, the main thing that is hindering Nathan from coming home is the constant nausea that he feels. It seems to be a vicious cycle of getting him rehydrated to combat the nausea, then taking him off of all medications and fluids administered via I.V., him being okay for a short while, and then him getting nauseated again and throwing up several times in a day. It's two steps forward, 1 and 3/4 steps back. Actually, there doesn't seem to be a whole lot of explanation as to why he is in this vicious cycle, just speculation. Tonight Nathan's dad, Rich, met with the doctor to explore the possibility of weening him off of the I.V. by keeping him on some I.V. medications and/or fluids, and take things as gradually as possible. There was a meeting of the minds and that is what they plan on doing next; a graduated method of taking him off of the I.V. Nathan has grown weary, but is still fighting hard. Nathan is the strongest, kindest and most patient person I've ever met, but even for him this has been trying on his spirit. I am eternally grateful to his wonderful family and friends who have taken the time to visit and sit or call Nathan. It is absolutely essential that he has daily contact with as many people who love him as possible so his spirits can be lifted. Thank you.
As today comes to the end, we hold on to the hope that Nathan will get good rest and God will restore his body and make him whole. Please continue to keep all of us in your prayers and thoughts. It is during times like these that we learn who really cares about us. Thank you for caring.
Nathan is still fighting to recuperate from what we thought to be a minor procedure. It seems that his body is so tired and every time progress is made, retreat happens. He had been making great strides on Sunday and Monday with keeping more fluids down and a decrease in nausea, but we had a set back starting on Tuesday when they took away all of his fluids (with the exception of an IV) because the doctors wanted to go in and assess the drain to make sure everything was working properly. They had to take him off of everything taken orally in the event they had to put him completely under. The doctors have also been concerned because his white blood cell count is higher than it should be which could either be a sign of him fighting a bacterial or fungal infection, or just his body recovering from the biliary drain being inserted. The results have been inconclusive. There has been a team of several doctors on the infection control team that have been following this possibility. Right now, the main thing that is hindering Nathan from coming home is the constant nausea that he feels. It seems to be a vicious cycle of getting him rehydrated to combat the nausea, then taking him off of all medications and fluids administered via I.V., him being okay for a short while, and then him getting nauseated again and throwing up several times in a day. It's two steps forward, 1 and 3/4 steps back. Actually, there doesn't seem to be a whole lot of explanation as to why he is in this vicious cycle, just speculation. Tonight Nathan's dad, Rich, met with the doctor to explore the possibility of weening him off of the I.V. by keeping him on some I.V. medications and/or fluids, and take things as gradually as possible. There was a meeting of the minds and that is what they plan on doing next; a graduated method of taking him off of the I.V. Nathan has grown weary, but is still fighting hard. Nathan is the strongest, kindest and most patient person I've ever met, but even for him this has been trying on his spirit. I am eternally grateful to his wonderful family and friends who have taken the time to visit and sit or call Nathan. It is absolutely essential that he has daily contact with as many people who love him as possible so his spirits can be lifted. Thank you.
As today comes to the end, we hold on to the hope that Nathan will get good rest and God will restore his body and make him whole. Please continue to keep all of us in your prayers and thoughts. It is during times like these that we learn who really cares about us. Thank you for caring.
Saturday, July 14, 2012
Focusing On The Positive
Since my update two days ago, so much has happened. Some of it is good, some of it is frustrating. When we first came down here to Stanford, the plan was for the doctor to place another drainage bag on the other side of Nathan's liver, keep him for an overnight stay to monitor him and to make sure that he doesn't develop an infection and then release him the next day. Unfortunately, that is not what happened. We hit a snag in Nathan's release and he is still being monitored for his condition. Since the details of the events are a bit lengthy, I will simply post a day by day description of the highlights for each day.
July 11- Day of procedure--> Interventional Radiologist placed another biliary drainage for the other side of his liver. Nathan was moved from recovery to an observatory section of the hospital where they monitored his vital signs and make sure he didn't develop a high fever which could indicate an infection. Nathan was pretty sore and tired and spent a lot of time resting. During this time, he was allowed to drink fluids and had no restrictions on his diet. Later that night, he developed a fever and the nurses monitored him closely to manage his pain. He was on two different types of antibiotics to stave off any possibility of infection, and they were still hopeful he would be able to come home the next day.
July 12- Fortunately, Nathan's fever dissipated by the next morning and the doctor wrote discharge orders for Nathan to be released in the afternoon. While I was getting instructions from the doctor and nurses for postoperative care and packing up his belongings, it was fairly evident to me that Nathan was in no condition to be released. He still seemed very weak and still hadn't been able to walk around at all. His pain seemed very intense, but we hoped that by taking things slowly, we could get him ready to leave. When Nathan sat up and I started to get him dressed, he got very nauseous and sat still for approximately 45 minutes. After remaining still for a long time, he got more nauseated and vomited up quite a bit. Neither myself or the staff had realized that his digestive track had slowed to a halt. Again. It was during this time, that they also realized that his fever had returned. Because of these conditions it was determined that he would not be able to come home. This was very unfortunate, but at the same time I was relieved because I didn't feel he was well enough or strong enough to be discharged in the first place. The plan was to keep him again overnight in hopes that he would get a good night's rest and be better in the morning. They also chose to move him to a private room and give him a lot of attention and additional monitoring. I think this was an excellent choice on their behalf.
July 13 (today)- Nathan's fever broke and his temperature remained stable throughout the day, but unfortunately the nausea had returned and once again, he vomited a few times. The doctor came back and checked on him a few times and listened to his stomach and said that it's just moving slowly. The nurses continued to give him a high amount of attention and care. They also gave him two types of anti-nausea medications (one of which made him drowsy) and dilaudid (a strong pain medication) and he was able to get some quality rest. They currently have him on a liquids only diet, as well. During the evening hours he was able to walk down the hallway and back which is great improvement and progress on his part. At this point, we are taking it moment by moment and trying to get him back on track and healthy enough to be discharged, but that will take a little bit of time. We are hoping that he will continue to improve throughout the night and best case scenario, come home tomorrow.
We also got some promising news about Nathan's recent blood test results when he and his dad met with the liver cancer tumor board last week. One of the purposes of the blood test and the past blood tests was to measure his cancer marker numbers, his bilirubin levels and other seemingly confusing things that I don't really quite understand. That said, I do understand the cancer marker and bilirubin results and there has been some definite improvement and positive response to the biliary drain bags. Before the drain bags were placed, his bilirubin levels were the following.
June 15th: 15 mg/dL
June 16th: 16.7 mg/dL
June 28th: 15.6 mg/dL
July 3rd: 13.8 mg/dL
While these numbers are still way above the normal range (.3-1.9 mg/dL), it is still good news! It means that the bags are doing their job and with having two drainage bags, they should come down even more.
For his ca 19-9 (his cancer markers) the results were the following.
June 15th: 60 U/ml
June 28th: 132 U/ml
July 3rd: 76 U/ml
Once again, these numbers are still higher than normal range, but it is also an indication that his body is responding favorably to the drain bag(s). It also hopefully means that his liver functions will continue to improve with added treatment and his impending chemotherapy. The added benefit with that is getting him to the point where he is eligible for clinical trials.
Please continue to pray for emotional and physical strength for Nathan and the family. The plan was for Nathan to begin his first round of chemotherapy in the middle of next week, but that doesn't look like a possibility. We had first delayed his chemotherapy because we felt that he needed to gain some weight and improve his liver functions and while it looks to be that they are improving, we have taken a step or two back with his weight gain. Before getting the second drain tube inserted Nathan had made great strides in his energy levels and weight gain, but now we have to refocus our attention on doing that again. I want to say a big thank you to all of you who are supporting all of us through this ordeal. The outpouring of love has been a tremendous help and we couldn't do this without you. Take care, God Bless.
July 11- Day of procedure--> Interventional Radiologist placed another biliary drainage for the other side of his liver. Nathan was moved from recovery to an observatory section of the hospital where they monitored his vital signs and make sure he didn't develop a high fever which could indicate an infection. Nathan was pretty sore and tired and spent a lot of time resting. During this time, he was allowed to drink fluids and had no restrictions on his diet. Later that night, he developed a fever and the nurses monitored him closely to manage his pain. He was on two different types of antibiotics to stave off any possibility of infection, and they were still hopeful he would be able to come home the next day.
July 12- Fortunately, Nathan's fever dissipated by the next morning and the doctor wrote discharge orders for Nathan to be released in the afternoon. While I was getting instructions from the doctor and nurses for postoperative care and packing up his belongings, it was fairly evident to me that Nathan was in no condition to be released. He still seemed very weak and still hadn't been able to walk around at all. His pain seemed very intense, but we hoped that by taking things slowly, we could get him ready to leave. When Nathan sat up and I started to get him dressed, he got very nauseous and sat still for approximately 45 minutes. After remaining still for a long time, he got more nauseated and vomited up quite a bit. Neither myself or the staff had realized that his digestive track had slowed to a halt. Again. It was during this time, that they also realized that his fever had returned. Because of these conditions it was determined that he would not be able to come home. This was very unfortunate, but at the same time I was relieved because I didn't feel he was well enough or strong enough to be discharged in the first place. The plan was to keep him again overnight in hopes that he would get a good night's rest and be better in the morning. They also chose to move him to a private room and give him a lot of attention and additional monitoring. I think this was an excellent choice on their behalf.
July 13 (today)- Nathan's fever broke and his temperature remained stable throughout the day, but unfortunately the nausea had returned and once again, he vomited a few times. The doctor came back and checked on him a few times and listened to his stomach and said that it's just moving slowly. The nurses continued to give him a high amount of attention and care. They also gave him two types of anti-nausea medications (one of which made him drowsy) and dilaudid (a strong pain medication) and he was able to get some quality rest. They currently have him on a liquids only diet, as well. During the evening hours he was able to walk down the hallway and back which is great improvement and progress on his part. At this point, we are taking it moment by moment and trying to get him back on track and healthy enough to be discharged, but that will take a little bit of time. We are hoping that he will continue to improve throughout the night and best case scenario, come home tomorrow.
We also got some promising news about Nathan's recent blood test results when he and his dad met with the liver cancer tumor board last week. One of the purposes of the blood test and the past blood tests was to measure his cancer marker numbers, his bilirubin levels and other seemingly confusing things that I don't really quite understand. That said, I do understand the cancer marker and bilirubin results and there has been some definite improvement and positive response to the biliary drain bags. Before the drain bags were placed, his bilirubin levels were the following.
June 15th: 15 mg/dL
June 16th: 16.7 mg/dL
June 28th: 15.6 mg/dL
July 3rd: 13.8 mg/dL
While these numbers are still way above the normal range (.3-1.9 mg/dL), it is still good news! It means that the bags are doing their job and with having two drainage bags, they should come down even more.
For his ca 19-9 (his cancer markers) the results were the following.
June 15th: 60 U/ml
June 28th: 132 U/ml
July 3rd: 76 U/ml
Once again, these numbers are still higher than normal range, but it is also an indication that his body is responding favorably to the drain bag(s). It also hopefully means that his liver functions will continue to improve with added treatment and his impending chemotherapy. The added benefit with that is getting him to the point where he is eligible for clinical trials.
Please continue to pray for emotional and physical strength for Nathan and the family. The plan was for Nathan to begin his first round of chemotherapy in the middle of next week, but that doesn't look like a possibility. We had first delayed his chemotherapy because we felt that he needed to gain some weight and improve his liver functions and while it looks to be that they are improving, we have taken a step or two back with his weight gain. Before getting the second drain tube inserted Nathan had made great strides in his energy levels and weight gain, but now we have to refocus our attention on doing that again. I want to say a big thank you to all of you who are supporting all of us through this ordeal. The outpouring of love has been a tremendous help and we couldn't do this without you. Take care, God Bless.
Wednesday, July 11, 2012
Waiting Is The Hardest Part
This morning at 630am, Nathan and I arrived at Stanford Medical Center in the ambulatory surgery center. As most of you know and have probably experienced first hand, the process to get checked in and ready for a procedure feels unbearably long and drawn out. After checking in, they took Nathan to the back into a curtained area where they could draw some blood to check for clotting time, hooked him up to an IV for fluids and an antibiotic, discussed what the doctors would do during the procedure, met with several nurses and discussed his current condition, and discussed his options for anesthesia. While all of this was going on, I fielded phone calls and tried to make sure Nathan was as comfortable as possible, gave him as much love as time allowed, and lip synced to corny songs on the television in hopes to make him laugh. I almost got him to laugh. I think Nathan thinks I'm cute. I think he is, too. Back to the topic...what are we doing here today?
Today's visit to Stanford is primarily focused on adding another drainage tube to the other side of his liver and assess their ability to move the drainage tube at a future time to his small intestine. If you remember on my last post, they hope that this will increase the amount of nutrients he will absorb and keep him better hydrated, but apparently that process to move it takes time. The results from the most recent CT scan shows that one side of his liver is not draining an bile at all, so first they are want to decrease his bilirubin levels. This will take more time. I am tired of waiting for everything. Today is one of those days when I just want things to be fast and snappy. Actually, every day is one of those days. Already, he has been in surgery for nearly three hours. The doctor we spoke to this morning said it would take one or two hours. When the doctors give time limits, any amount of time that they go over that allotment allows for my mind to wander and worry. Every time a nurse or doctor comes to the waiting room, my head pops up, whips to the left, and I open my ears for my name. I am tired of waiting and I have a sore neck now. I just wish to be next to my sweetie and hold his hand and tell him everything is okay. Actually, that's a lie. As long as I am making wishes, I may as well go for broke. What I really wish for is that I would close my eyes, open them and to be back at home with the kids and playing outside with Nathan. It's a hot day and maybe we would be playing with squirt guns and water balloons and eating strawberry popsicles in the shade. Maybe we would be sitting in the cool, air conditioned house and would be watching a movie. I just wish I could close my eyes and make this all go away.
Sorry this post has been such a downer. I just really need My Nathan. I need him to be okay and I am tired of waiting for that to happen. It's torture to see his health decline and see new symptoms of the cancer. He gets tired, his temperature fluctuates, he has pain in his stomach which sometimes radiates to his kidneys, and he has decreased mobility. This whole experience has been such a nightmare that won't end and it's becoming very hard at times to remain positive. In the meantime, I'll just keep waiting and closing my eyes and wishing and praying for My Nathan to be better.
Today's visit to Stanford is primarily focused on adding another drainage tube to the other side of his liver and assess their ability to move the drainage tube at a future time to his small intestine. If you remember on my last post, they hope that this will increase the amount of nutrients he will absorb and keep him better hydrated, but apparently that process to move it takes time. The results from the most recent CT scan shows that one side of his liver is not draining an bile at all, so first they are want to decrease his bilirubin levels. This will take more time. I am tired of waiting for everything. Today is one of those days when I just want things to be fast and snappy. Actually, every day is one of those days. Already, he has been in surgery for nearly three hours. The doctor we spoke to this morning said it would take one or two hours. When the doctors give time limits, any amount of time that they go over that allotment allows for my mind to wander and worry. Every time a nurse or doctor comes to the waiting room, my head pops up, whips to the left, and I open my ears for my name. I am tired of waiting and I have a sore neck now. I just wish to be next to my sweetie and hold his hand and tell him everything is okay. Actually, that's a lie. As long as I am making wishes, I may as well go for broke. What I really wish for is that I would close my eyes, open them and to be back at home with the kids and playing outside with Nathan. It's a hot day and maybe we would be playing with squirt guns and water balloons and eating strawberry popsicles in the shade. Maybe we would be sitting in the cool, air conditioned house and would be watching a movie. I just wish I could close my eyes and make this all go away.
Sorry this post has been such a downer. I just really need My Nathan. I need him to be okay and I am tired of waiting for that to happen. It's torture to see his health decline and see new symptoms of the cancer. He gets tired, his temperature fluctuates, he has pain in his stomach which sometimes radiates to his kidneys, and he has decreased mobility. This whole experience has been such a nightmare that won't end and it's becoming very hard at times to remain positive. In the meantime, I'll just keep waiting and closing my eyes and wishing and praying for My Nathan to be better.
Thursday, July 5, 2012
Hope
Greetings, friends and family. First of all, I would like to say a big thank you to all of you who read the first post earlier this week. We continue to feel love and support from all of you. In this busy, electronic world we live in it can often feel like humanity and compassion have disappeared, but you have all reminded us that it still exists and thrives. I would especially like to say a big thank you to Nathan's former employer, S & L Food Sales, for stepping up to the plate and going beyond the call of duty and helping us out in very practical ways. The wonderful staff at S & L have arranged to provide lawn care services to maintain our yard and lawn since Nathan is not able to do so and they want to alleviate me from having to do it myself (plus, our lawn mower is currently broken). They have also organized a crew to come to the house this weekend and clear out our garage from the barrage of toxic chemicals that have been collecting for the last 50 or so years. By clearing out the chemicals, they also hope to stock our garage with various household items that we need (toilet paper, paper towels, trash bags, laundry soap, etc.). We thank you from the bottom of our hearts.
There have been some new and recent developments in the care and treatment for Nathan. As I mentioned earlier this week, Nathan and his dad traveled down to Stanford to meet with the tumor board. The tumor board they met with focuses specifically on cancers of the liver. Liver cancer is a very difficult disease to treat. Because the liver works so closely with all of the other digestive organs (the gallbladder, pancreas, stomach, intestines, kidneys, etc.), once the cancer has spread to affect the entire liver, it is very likely that all of the digestive organs are compromised. It is also because of this symbiotic relationship and close proximity of these organs, that doing a liver transplant would be very difficult. Per the doctors at UCSF and all of our research and the oncologist here in Chico, doing a liver a transplant when it involves advanced cancer, would also require removing parts and pieces of other organs and there would still be a very high chance of the cancer returning very soon. The oncologist we visited with last week classified Nathan's liver cancer as being metastatic because the original site of the cancer started in his bile ducts and has now spread to other parts of his liver. Because the type of cancer Nathan has is very rare and aggressive (Cholangiocarcinoma), the chance of it spreading to other organs is a major risk. Another delicate matter is making sure the blood supply from the liver is not released into the entire body and causing more possible complications. All of these issues are being balanced by not only the doctors at Enloe, but those at Stanford as well. The doctors at Stanford confirmed that sadly, Nathan is not eligible for a transplant at this time. They did, however, feel that it is imperative that his liver function should be and can be improved before starting his chemotherapy. This is something that the doctors at UCSF didn't feel was possible, so the fact that Stanford does is some promising news. The benefit of improving his liver functionality is that it may allow Nathan's liver to be more responsive to the impending chemotherapy which would undoubtedly prolong Nathan's live by some or a lot of time. Another benefit of delaying chemotherapy is that it will give us a couple of more weeks for Nathan to gain some weight back before his body undergoes the rigors of chemotherapy and would likely lose more weight. Since Nathan has already lost over twenty pounds, we want to rectify his weight before more is lost. The steps that Stanford plans to take for Nathan's care may make a huge difference. First, they will take a CAT scan of his torso and chest to ensure that the cancer has not spread to other organs already. After they study the images, Nathan will go back to Stanford where they will move the drainage tube from his liver to his small intestine. The justification in doing so would allow for his body to absorb more nutrients from the bile. Since all of this has happened, we have learned that the bile from the liver aids in absorbing important nutrients such as vitamins D, E, K, and A. Moving the tube to the small intestine would allow his body to absorb more of these essential nutrients. In addition to this, since so much bile and liquid is directly drained from his liver, the Stanford doctors feel Nathan will be more hydrated and healthier overall. Once all of this is accomplished and they are satisfied, Stanford will administer Nathan's first dose of chemotherapy. Our hope is to improve Nathan's liver functions enough to where he may be eligible for clinical treatments that will prolong his life even longer. I was disheartened that Stanford didn't have some kind of magical potion that Nathan could ingest and make all of his illness disappear, but we do have hope. Hope feels good.
Holding onto hope and faith is all we have. Sometimes hope and faith come in unexpected ways. Sometimes they appear in a smile, a warm hug, or a gentle touch from a friend. As we go through our seemingly mundane lives, don't forget that you can spread hope. Hope that we are not alone and there is more to life besides watching movies, going out to clubs, buying new stuff, or getting angry at that driver who cut us off. Life is about making a connection with people and giving them hope that they are not alone. Faith that they matter in this world. Thank you for giving us that hope and faith.
There have been some new and recent developments in the care and treatment for Nathan. As I mentioned earlier this week, Nathan and his dad traveled down to Stanford to meet with the tumor board. The tumor board they met with focuses specifically on cancers of the liver. Liver cancer is a very difficult disease to treat. Because the liver works so closely with all of the other digestive organs (the gallbladder, pancreas, stomach, intestines, kidneys, etc.), once the cancer has spread to affect the entire liver, it is very likely that all of the digestive organs are compromised. It is also because of this symbiotic relationship and close proximity of these organs, that doing a liver transplant would be very difficult. Per the doctors at UCSF and all of our research and the oncologist here in Chico, doing a liver a transplant when it involves advanced cancer, would also require removing parts and pieces of other organs and there would still be a very high chance of the cancer returning very soon. The oncologist we visited with last week classified Nathan's liver cancer as being metastatic because the original site of the cancer started in his bile ducts and has now spread to other parts of his liver. Because the type of cancer Nathan has is very rare and aggressive (Cholangiocarcinoma), the chance of it spreading to other organs is a major risk. Another delicate matter is making sure the blood supply from the liver is not released into the entire body and causing more possible complications. All of these issues are being balanced by not only the doctors at Enloe, but those at Stanford as well. The doctors at Stanford confirmed that sadly, Nathan is not eligible for a transplant at this time. They did, however, feel that it is imperative that his liver function should be and can be improved before starting his chemotherapy. This is something that the doctors at UCSF didn't feel was possible, so the fact that Stanford does is some promising news. The benefit of improving his liver functionality is that it may allow Nathan's liver to be more responsive to the impending chemotherapy which would undoubtedly prolong Nathan's live by some or a lot of time. Another benefit of delaying chemotherapy is that it will give us a couple of more weeks for Nathan to gain some weight back before his body undergoes the rigors of chemotherapy and would likely lose more weight. Since Nathan has already lost over twenty pounds, we want to rectify his weight before more is lost. The steps that Stanford plans to take for Nathan's care may make a huge difference. First, they will take a CAT scan of his torso and chest to ensure that the cancer has not spread to other organs already. After they study the images, Nathan will go back to Stanford where they will move the drainage tube from his liver to his small intestine. The justification in doing so would allow for his body to absorb more nutrients from the bile. Since all of this has happened, we have learned that the bile from the liver aids in absorbing important nutrients such as vitamins D, E, K, and A. Moving the tube to the small intestine would allow his body to absorb more of these essential nutrients. In addition to this, since so much bile and liquid is directly drained from his liver, the Stanford doctors feel Nathan will be more hydrated and healthier overall. Once all of this is accomplished and they are satisfied, Stanford will administer Nathan's first dose of chemotherapy. Our hope is to improve Nathan's liver functions enough to where he may be eligible for clinical treatments that will prolong his life even longer. I was disheartened that Stanford didn't have some kind of magical potion that Nathan could ingest and make all of his illness disappear, but we do have hope. Hope feels good.
Holding onto hope and faith is all we have. Sometimes hope and faith come in unexpected ways. Sometimes they appear in a smile, a warm hug, or a gentle touch from a friend. As we go through our seemingly mundane lives, don't forget that you can spread hope. Hope that we are not alone and there is more to life besides watching movies, going out to clubs, buying new stuff, or getting angry at that driver who cut us off. Life is about making a connection with people and giving them hope that they are not alone. Faith that they matter in this world. Thank you for giving us that hope and faith.
Tuesday, July 3, 2012
Past, Present, Future
This is the first blog post for this blog site. This will be a combined effort made by me (Nathan's fiancee), Nathan's father, and Nathan himself if he feels compelled to post something. We want this site to be as positive and informative as possible. We appreciate feedback, support, helpful advice, and positive comments. This is a very tough time for all of us and everyone who is closest to the situation is still reeling from shock and pain. For others of you, there may still be some confusion about how all of this began, so I felt that a brief history of how the events unfolded would be beneficial. I will also include the present plan of action for his treatment and any current options we are looking in to.
Approximately three months ago, Nathan started feeling some abdominal pain. The pain was a dull ache and the pain was constant. At first, the ache didn't interfere in his life too much. Nathan had just recently finished student teaching at the end of December and had went back to work full time as a warehouse employee at S and L Food Sales here in Chico. He was still able to work full time and enjoy many of his normal activities, but as the weeks progressed, the pain got increasingly worse. Nathan decided that it was probably a good idea to go to a medical clinic here in Chico (Enloe Prompt Care) to play it on the safe side. At that time, he shared with the doctor his medical history and that he suffered from Ulcerative Colitis as a young child. At that appointment, a very simple blood test was given to look for a digestive illness that was spreading around town. The blood work came back to show that he did not have that illness, and the doctor prescribed an over the counter acid reducer and thought that should fix his ailment. She advised him to stay away from certain types of foods and beverages to reduce the acidity levels in his stomach, which he did. Over the next few weeks, Nathan cut out coffee, alcohol, fatty foods, and anything that could possibly be a culprit. He even kept a food diary for a few days, but he found that nothing he did fixed his stomach problem and, in fact, the stomach pain worsened. In the second week of May, Nathan went to the same walk-in clinic, but was seen by a different doctor. At this time, Nathan shared his same medical history of having Ulcerative Colitis, and that the pain was constant and getting worse, but increased even more when he laid down. He also shared that he had backaches at times and that not even sleeping in an elevated position helped his stomach pain. This doctor jumped to the same conclusion as the first walk-in doctor did, but applied the official term of G.E.R.D., or Gastroesophageal Reflux Disease, and prescribed a very expensive medication called Nexium, and another acid reducer to help. Nathan was skeptical of this diagnosis, but thought maybe this stronger medication would help. Three weeks passed by and Nathan's pain increased no matter what he did. He was exhausted because he couldn't sleep due to the pain and the strain the pain placed on his body. He continued to work over 50 hours a week and still tried to keep up on his normal activities around the house. Then, on June 3rd, Nathan came home from work at night and was concerned because his eyes seemed a little yellow, but it was hard to tell for sure in that light. The next day we went into the daylight, and his eyes did seem yellowish. Since we were both unsatisfied with the diagnoses from the prompt care and Nathan's medical insurance was again active, he made an appointment with a "real" doctor. I did a little research and found that if someone is experiencing jaundice symptoms that it is imperative they be seen immediately. On Tuesday, June 5th, Nathan went to the emergency room. They admitted him because his bilirubin levels were high, but the doctor thought that it could just be a gallstone blocking his small intestine. That diagnosis didn't make much sense because he didn't have any of the risk factors associated with gallbladder issues (overweight, female, over 40 years of age, etc.), but we were hopeful that is what it would be since it would be a relatively easy fix. The next morning, they wheeled him down to radiology for an M.R.I. and the results, sure enough, showed that it was not anything having to do with gallstones. To get a better picture of the area of concern, they performed a CAT scan and found damage to the liver and bile ducts. In came the G.I. specialist to inform us that he believed it to be something called Primary Sclerosing Cholangitis, a very serious autoimmune disease that has a high occurrence with those who have had any inflammatory bowel disease, such as Ulcerative Colitis.http://www.mayoclinic.com/health/primary-sclerosing-cholangitis/DS00918 The plan was to go in through his mouth, down his throat, and up through his pancreas to get a better picture of the liver and to place a stent in his common bile duct so the liver could drain, and to also get a biopsy of the liver. After the procedure, we were told the next probable step would be to get him on the donor list for a new liver and to be referred to a larger hospital (such as UCSF or Stanford). After this procedure, Nathan's digestive tract slowed down to a complete halt and he developed pancreatitis and was on several types of pain medications. Nathan's jaundice was also getting worse and his skin and eyes were a very deep hue of yellow. Over the next four days he improved only slightly, but the G.I. doctor felt that after getting the biopsy results back and them showing a change in the liver cells which could indicate something very serious, that we needed to be seen immediately by the specialists at UCSF or Stanford.
During this time, our lives felt completely shaken and turned upside down. We had so many questions, problems and concerns to address. We were also very angry. We were mostly angry at the medical profession. Why had these risks of having Ulcerative Colitis and possibly developing more illnesses in the future were never explained to Nathan or his family before? How come no doctor that had ever seen Nathan before had known to keep an eye on Nathan's liver functions? We could have caught this in time to prevent anything bad from happening. We all cried and felt helpless and at times, hopeless. Nathan is an amazing person. I know a lot of people say that about their loved ones, but Nathan really is amazing. I just can't imagine my life without him. He's my best friend and loves me in a way that no one ever has before. Everyone who meets him can see that he is a good man with a warm and kind heart. We all wanted to make sure that Nathan had the best treatment and was seen by the most intelligent and prestigious doctors in the area, so we decided that we would try UCSF. Based on the information we all read, they were the ones to go to for a liver transplant.
On Wednesday, June 13th, Nathan, his dad, and I all sat nervously in a small exam room at a medical building affiliated with UCSF. Nathan had only been able to eat ice chips, water, and jello for several days and he had started loosing weight. His eyes and skin were still yellow, and his stomach was distended. He looked tired, but he still had the same sparkle and kindness in his eyes. The door opened and in walked two doctors and a young medical student taking notes. It seemed very surreal. It felt like we were in a medical drama, but the suspense felt like a nauseating pit in our stomach. We knew things were very serious in that exam room. We were not at all prepared to hear what came next. The doctor revealed to us that the images he received from Enloe hospital showed two tumors in the liver, one on the left lobe and one near the portal vein in the right lobe and that based on the biopsy, there was a high probability of cancer. He also shared with us that due to the regulations and survival rates of such an advanced liver cancer, Nathan was more than likely not eligible for a liver transplant. There is still a little confusion around the reason for this and the explanation is rather long, so I will include the following link. http://www.cancer.net/patient/Cancer+Types/Bile+Duct+Cancer/ci.Bile+Duct+Cancer.printer#.T-kwfH-nNbs.email Dr Corvera explained there looked to be a small area of the liver that looked to be unaffected by the cancer and hoped that he could remove 80% of the liver, wait for the liver to regenerate itself, and then start chemotherapy treatments. The survival rate for this kind of procedure was rather low, but there was still a chance of five year survival. The doctor was also concerned about Nathan's distended stomach and the fact that he was still extremely jaundiced and he suspected that the stents were not working because the bile ducts were too damaged. He admitted Nathan into the hospital at UCSF and the goal was to get Nathan to a healthier condition, place a tube into his liver and drain the bile that way. This would likely be a longterm way to drain the bile. At this time, they would also take a more precise biopsy of the liver to make sure of what we were dealing with and how bad the cancer had spread. So, on June 15th the doctors did the draining and biopsy procedure and at this time we were still hopeful for the liver resection. The credentials and professionalism of the medical staff put us at ease about the future, but the main doctor (Corvera) shared he would be leaving for vacation. We had endured so much up to this point and just wanted to hear good news from anyone, but unfortunately, the news was worse. On Saturday, June 16th, we found out the entire liver was cancerous and a removing part of the liver was not an option. With Dr. Corvera gone Nathan's dad had to deal with him via email, which was very frustrating. The plan of action at that point was to release Nathan since there wasn't anything he could do, and we were referred to an oncologist here in Chico. Nathan was discharged the next day and there were still so many questions to be answered. What do we do next? What are things to keep an eye out for? What are some limits and restrictions for Nathan's diet? How do we keep him alive? It felt like UCSF was just dropping the ball. It was a weekend and no one seemed available to answer our questions. We were forced to do our own research about the name of his cancer, which was Cholangiocarcinoma. http://www.cholangiocarcinoma.org/
We found links and shuffled to put the puzzle pieces together ourselves. By this time, Nathan had been through so much and was still very jaundiced, weak, tired and had lost several pounds. He was also in a lot of pain. It was so hard to accept this prognosis and diagnosis, but it was even harder to see my young, vibrant and strong fiancé shrink down to such a weak state of health. This was the man I was supposed to spend the rest of my life with, the one who had become a father to my fatherless children, the one who I was going have children with in the future, the one to hold my hand through life. He is my best friend and I felt like I was losing him. His parents were also struggling to make sense of the situation. This was their child. The one who had endured so much as an adolescent with Ulcerative Colitis and had the heart and strength of refined gold. Finally, on Tuesday, June 19th we were referred to an oncologist in Chico. We had been staying at a family member's condo in Napa and enjoying a mini-vacation with his parents and the kids and came back home to Chico on June 21st. We were able to get an appointment with an oncologist for June 27th where we would learn what we would do next. In the meantime, we still weren't satisfied with our experience with UCSF and felt like they just sent Nathan home to die. There was no follow up care with his bile duct drainage bag and they didn't give us a whole lot of information about trial studies available or a referral to a G.I. doctor. Nathan's dad pursued Stanford Medical Center so we could get more specialized care, and we learned from the oncologist in Chico that the standard treatment for Cholangiocarcinoma is doing a type of chemotherapy called Cisplatin and Gemzar http://www.cancer.gov/clinicaltrials/results/biliarytract0510 This type of treatment could help prolong Nathan's life for anywhere from 3 months to 12 months. We try not to focus on these statistics, but it's hard not to. We are hoping that this will bide us time and we can figure something else out.
Today, Nathan and his dad are meeting with the tumor board at Stanford Medical Clinic to find out if there are more options that have not been presented to us and to confirm if the chemotherapy is something we should do. In the meantime, we choose to accept every day we have with Nathan as a gift. At times I lose it and cry because I hurt for Nathan and what he is going through, but I also know that I want to enjoy all the time I have with him. He is truly an inspiration through all of this. I live for the moments I can make him smile and laugh and I am grateful to have him in my life. Through all of this, he has done a remarkable job of trying to keep his sense of humor and still continues to be kind and warmhearted towards everyone. We are also thankful for the outpouring of love upon us and everyone's willingness to help and pray for us. I still have not given up on a miracle. I have seen and heard God do wonderful things to other people in terminally ill situations and I pray that we will get our miracle, too. I don't think it's a coincidence that I have seen or heard the verse from the bible three times this morning, "Be still and know that I am God". That is all I can do sometimes. It's hard to let go of my control, but it's the only way I can stay sane at times.
I love you, Nathan Butterfield. Always and forever....
Approximately three months ago, Nathan started feeling some abdominal pain. The pain was a dull ache and the pain was constant. At first, the ache didn't interfere in his life too much. Nathan had just recently finished student teaching at the end of December and had went back to work full time as a warehouse employee at S and L Food Sales here in Chico. He was still able to work full time and enjoy many of his normal activities, but as the weeks progressed, the pain got increasingly worse. Nathan decided that it was probably a good idea to go to a medical clinic here in Chico (Enloe Prompt Care) to play it on the safe side. At that time, he shared with the doctor his medical history and that he suffered from Ulcerative Colitis as a young child. At that appointment, a very simple blood test was given to look for a digestive illness that was spreading around town. The blood work came back to show that he did not have that illness, and the doctor prescribed an over the counter acid reducer and thought that should fix his ailment. She advised him to stay away from certain types of foods and beverages to reduce the acidity levels in his stomach, which he did. Over the next few weeks, Nathan cut out coffee, alcohol, fatty foods, and anything that could possibly be a culprit. He even kept a food diary for a few days, but he found that nothing he did fixed his stomach problem and, in fact, the stomach pain worsened. In the second week of May, Nathan went to the same walk-in clinic, but was seen by a different doctor. At this time, Nathan shared his same medical history of having Ulcerative Colitis, and that the pain was constant and getting worse, but increased even more when he laid down. He also shared that he had backaches at times and that not even sleeping in an elevated position helped his stomach pain. This doctor jumped to the same conclusion as the first walk-in doctor did, but applied the official term of G.E.R.D., or Gastroesophageal Reflux Disease, and prescribed a very expensive medication called Nexium, and another acid reducer to help. Nathan was skeptical of this diagnosis, but thought maybe this stronger medication would help. Three weeks passed by and Nathan's pain increased no matter what he did. He was exhausted because he couldn't sleep due to the pain and the strain the pain placed on his body. He continued to work over 50 hours a week and still tried to keep up on his normal activities around the house. Then, on June 3rd, Nathan came home from work at night and was concerned because his eyes seemed a little yellow, but it was hard to tell for sure in that light. The next day we went into the daylight, and his eyes did seem yellowish. Since we were both unsatisfied with the diagnoses from the prompt care and Nathan's medical insurance was again active, he made an appointment with a "real" doctor. I did a little research and found that if someone is experiencing jaundice symptoms that it is imperative they be seen immediately. On Tuesday, June 5th, Nathan went to the emergency room. They admitted him because his bilirubin levels were high, but the doctor thought that it could just be a gallstone blocking his small intestine. That diagnosis didn't make much sense because he didn't have any of the risk factors associated with gallbladder issues (overweight, female, over 40 years of age, etc.), but we were hopeful that is what it would be since it would be a relatively easy fix. The next morning, they wheeled him down to radiology for an M.R.I. and the results, sure enough, showed that it was not anything having to do with gallstones. To get a better picture of the area of concern, they performed a CAT scan and found damage to the liver and bile ducts. In came the G.I. specialist to inform us that he believed it to be something called Primary Sclerosing Cholangitis, a very serious autoimmune disease that has a high occurrence with those who have had any inflammatory bowel disease, such as Ulcerative Colitis.http://www.mayoclinic.com/health/primary-sclerosing-cholangitis/DS00918 The plan was to go in through his mouth, down his throat, and up through his pancreas to get a better picture of the liver and to place a stent in his common bile duct so the liver could drain, and to also get a biopsy of the liver. After the procedure, we were told the next probable step would be to get him on the donor list for a new liver and to be referred to a larger hospital (such as UCSF or Stanford). After this procedure, Nathan's digestive tract slowed down to a complete halt and he developed pancreatitis and was on several types of pain medications. Nathan's jaundice was also getting worse and his skin and eyes were a very deep hue of yellow. Over the next four days he improved only slightly, but the G.I. doctor felt that after getting the biopsy results back and them showing a change in the liver cells which could indicate something very serious, that we needed to be seen immediately by the specialists at UCSF or Stanford.
During this time, our lives felt completely shaken and turned upside down. We had so many questions, problems and concerns to address. We were also very angry. We were mostly angry at the medical profession. Why had these risks of having Ulcerative Colitis and possibly developing more illnesses in the future were never explained to Nathan or his family before? How come no doctor that had ever seen Nathan before had known to keep an eye on Nathan's liver functions? We could have caught this in time to prevent anything bad from happening. We all cried and felt helpless and at times, hopeless. Nathan is an amazing person. I know a lot of people say that about their loved ones, but Nathan really is amazing. I just can't imagine my life without him. He's my best friend and loves me in a way that no one ever has before. Everyone who meets him can see that he is a good man with a warm and kind heart. We all wanted to make sure that Nathan had the best treatment and was seen by the most intelligent and prestigious doctors in the area, so we decided that we would try UCSF. Based on the information we all read, they were the ones to go to for a liver transplant.
On Wednesday, June 13th, Nathan, his dad, and I all sat nervously in a small exam room at a medical building affiliated with UCSF. Nathan had only been able to eat ice chips, water, and jello for several days and he had started loosing weight. His eyes and skin were still yellow, and his stomach was distended. He looked tired, but he still had the same sparkle and kindness in his eyes. The door opened and in walked two doctors and a young medical student taking notes. It seemed very surreal. It felt like we were in a medical drama, but the suspense felt like a nauseating pit in our stomach. We knew things were very serious in that exam room. We were not at all prepared to hear what came next. The doctor revealed to us that the images he received from Enloe hospital showed two tumors in the liver, one on the left lobe and one near the portal vein in the right lobe and that based on the biopsy, there was a high probability of cancer. He also shared with us that due to the regulations and survival rates of such an advanced liver cancer, Nathan was more than likely not eligible for a liver transplant. There is still a little confusion around the reason for this and the explanation is rather long, so I will include the following link. http://www.cancer.net/patient/Cancer+Types/Bile+Duct+Cancer/ci.Bile+Duct+Cancer.printer#.T-kwfH-nNbs.email Dr Corvera explained there looked to be a small area of the liver that looked to be unaffected by the cancer and hoped that he could remove 80% of the liver, wait for the liver to regenerate itself, and then start chemotherapy treatments. The survival rate for this kind of procedure was rather low, but there was still a chance of five year survival. The doctor was also concerned about Nathan's distended stomach and the fact that he was still extremely jaundiced and he suspected that the stents were not working because the bile ducts were too damaged. He admitted Nathan into the hospital at UCSF and the goal was to get Nathan to a healthier condition, place a tube into his liver and drain the bile that way. This would likely be a longterm way to drain the bile. At this time, they would also take a more precise biopsy of the liver to make sure of what we were dealing with and how bad the cancer had spread. So, on June 15th the doctors did the draining and biopsy procedure and at this time we were still hopeful for the liver resection. The credentials and professionalism of the medical staff put us at ease about the future, but the main doctor (Corvera) shared he would be leaving for vacation. We had endured so much up to this point and just wanted to hear good news from anyone, but unfortunately, the news was worse. On Saturday, June 16th, we found out the entire liver was cancerous and a removing part of the liver was not an option. With Dr. Corvera gone Nathan's dad had to deal with him via email, which was very frustrating. The plan of action at that point was to release Nathan since there wasn't anything he could do, and we were referred to an oncologist here in Chico. Nathan was discharged the next day and there were still so many questions to be answered. What do we do next? What are things to keep an eye out for? What are some limits and restrictions for Nathan's diet? How do we keep him alive? It felt like UCSF was just dropping the ball. It was a weekend and no one seemed available to answer our questions. We were forced to do our own research about the name of his cancer, which was Cholangiocarcinoma. http://www.cholangiocarcinoma.org/
We found links and shuffled to put the puzzle pieces together ourselves. By this time, Nathan had been through so much and was still very jaundiced, weak, tired and had lost several pounds. He was also in a lot of pain. It was so hard to accept this prognosis and diagnosis, but it was even harder to see my young, vibrant and strong fiancé shrink down to such a weak state of health. This was the man I was supposed to spend the rest of my life with, the one who had become a father to my fatherless children, the one who I was going have children with in the future, the one to hold my hand through life. He is my best friend and I felt like I was losing him. His parents were also struggling to make sense of the situation. This was their child. The one who had endured so much as an adolescent with Ulcerative Colitis and had the heart and strength of refined gold. Finally, on Tuesday, June 19th we were referred to an oncologist in Chico. We had been staying at a family member's condo in Napa and enjoying a mini-vacation with his parents and the kids and came back home to Chico on June 21st. We were able to get an appointment with an oncologist for June 27th where we would learn what we would do next. In the meantime, we still weren't satisfied with our experience with UCSF and felt like they just sent Nathan home to die. There was no follow up care with his bile duct drainage bag and they didn't give us a whole lot of information about trial studies available or a referral to a G.I. doctor. Nathan's dad pursued Stanford Medical Center so we could get more specialized care, and we learned from the oncologist in Chico that the standard treatment for Cholangiocarcinoma is doing a type of chemotherapy called Cisplatin and Gemzar http://www.cancer.gov/clinicaltrials/results/biliarytract0510 This type of treatment could help prolong Nathan's life for anywhere from 3 months to 12 months. We try not to focus on these statistics, but it's hard not to. We are hoping that this will bide us time and we can figure something else out.
Today, Nathan and his dad are meeting with the tumor board at Stanford Medical Clinic to find out if there are more options that have not been presented to us and to confirm if the chemotherapy is something we should do. In the meantime, we choose to accept every day we have with Nathan as a gift. At times I lose it and cry because I hurt for Nathan and what he is going through, but I also know that I want to enjoy all the time I have with him. He is truly an inspiration through all of this. I live for the moments I can make him smile and laugh and I am grateful to have him in my life. Through all of this, he has done a remarkable job of trying to keep his sense of humor and still continues to be kind and warmhearted towards everyone. We are also thankful for the outpouring of love upon us and everyone's willingness to help and pray for us. I still have not given up on a miracle. I have seen and heard God do wonderful things to other people in terminally ill situations and I pray that we will get our miracle, too. I don't think it's a coincidence that I have seen or heard the verse from the bible three times this morning, "Be still and know that I am God". That is all I can do sometimes. It's hard to let go of my control, but it's the only way I can stay sane at times.
I love you, Nathan Butterfield. Always and forever....
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