Trent had an MRI on Wednesday on his hip to check for more cancer. Nothing. Yeah! All they noted was scar tissue which will continue to form for the next couple of years. The doctor was absolutely estatic when he saw Trent's incision. It has healed beautifully. There ARE two stitches left which they gave me permission to pull when Trent is ready for that. He he he! He better learn to trust his personal nurse a little more! Dr. Jones asked if he could watch Trent walk so Trent paraded up and down the hall for him and his team. I stayed in the exam room but could see what was going on. The three doctors and Nancy, the nurse, had their jaws on the floor. All I heard was, "Oh my gosh, oh my gosh!" over and over. They were stunned that he could walk as well as he can without a cane. Dr. Jones said that people just don't heal like that. He really did not expect Trent, after losing the biggest muscles in his body, to be able to walk so well. I was beaming! It was so nice to hear such positive things. Trent thanked Dr. Jones for all he has done. Dr. Jones replied, "Oh, my part was minimal." I pointed to Trents giant incision and said, "No it was NOT!" Then Trent chimed in, "Yeah, it was maximus and medius!" I laughed right out loud! I was very impressed he could come up with that with chemobrain!
I was supposed to write all the details on Wednesday when we got back home. But Trent had other plans. He ended up with a fever and horrible chest pains all night long, so it was a little hectic. I kept taking his temperature every ten minutes or so, watching him like a hawk. I ended up calling the on call oncologist and we agreed to watch it and wait for a little longer. The fever broke around 2 am. Since then he has had chest pain off an on. It makes me nervous but I try to convince myself that is the feeling of cancer being eaten up in his lungs.
So tomorrow we are back for the second dose for Round 8. If the pattern repeats itself he should be feeling pretty crappy on Thanksgiving. That is so sad because he seriously has been looking forward to this for a very long time!
Sunday, November 21, 2010
Tuesday, November 16, 2010
Round Eight
Trent did not end up needing blood yesterday but his albumin levels are pretty low. That means he is eating steak and peanut butter for every meal! Yeah for him. We have been trying to get him suped up on protein for the past few weeks but it was not quite enough. He also had gained ten pounds in the last two weeks. Whoot Whoot, Right! No, really it is because he is retaining water and had to be put on lasix which he hates because it makes him use the bathroom a ton. I had noticed he had some major cankles the last couple of days but usually when he swells I see it in his eyes first. It shouldn't take too long to get the water out.
We also had about the best infusion ever yesterday. We sat next to a really cool guy named Dov. He has colorectal cancer that has spread to his liver, kidney, and lymphnodes. Three years ago they gave him less than two years to live. But he is still kickin. He has a super positive, but realistic attitude and it was great to talk to him because he knows exactly how it is. We talked a lot about appreciating our own trials. "At least I don't have to deal with " You fill in the blank. Even through all that he has faced he still says that. He was pretty cool and we had a really fun time talking to him and his mother.
We had a couple of funny chemo moments in the past few days. Just to give you a glimpse of what chemo does to your brain, here are some great examples...
While watching TV a commercial came on playing Silent Night. Trent turns to me and says, "That is a really pretty song, is that a Christmas song?" Uhh....yep.
Then yesterday as we were coming home from the Huntsman we passed a store called "Kneaders". Trent says, "K-neaders, what kind of a name is that?" We both had a good laugh about that one!
I had to laugh today because from the time Trent got up until he laid down for a nap, he talked about food nonstop. No-really. NON-STOP. Every sentence started with, "Wouldn't it be really good to make..." or "I saw this thing on the Food Network..." My mom and I were pretty good to humor him and listen to all of his Foodies.
Tomorrow we go back down for the MRI and a follow up with Dr. Jones, the surgeon. I am pretty excited because there are two stitches that were left behind in Trent's leg that are trying to work themselves out. I have offered time and time again to pull them for him. But Trent won't let me near them. I think I will ask Dr. Jones if I can take them out tomorrow!
We also had about the best infusion ever yesterday. We sat next to a really cool guy named Dov. He has colorectal cancer that has spread to his liver, kidney, and lymphnodes. Three years ago they gave him less than two years to live. But he is still kickin. He has a super positive, but realistic attitude and it was great to talk to him because he knows exactly how it is. We talked a lot about appreciating our own trials. "At least I don't have to deal with " You fill in the blank. Even through all that he has faced he still says that. He was pretty cool and we had a really fun time talking to him and his mother.
We had a couple of funny chemo moments in the past few days. Just to give you a glimpse of what chemo does to your brain, here are some great examples...
While watching TV a commercial came on playing Silent Night. Trent turns to me and says, "That is a really pretty song, is that a Christmas song?" Uhh....yep.
Then yesterday as we were coming home from the Huntsman we passed a store called "Kneaders". Trent says, "K-neaders, what kind of a name is that?" We both had a good laugh about that one!
I had to laugh today because from the time Trent got up until he laid down for a nap, he talked about food nonstop. No-really. NON-STOP. Every sentence started with, "Wouldn't it be really good to make..." or "I saw this thing on the Food Network..." My mom and I were pretty good to humor him and listen to all of his Foodies.
Tomorrow we go back down for the MRI and a follow up with Dr. Jones, the surgeon. I am pretty excited because there are two stitches that were left behind in Trent's leg that are trying to work themselves out. I have offered time and time again to pull them for him. But Trent won't let me near them. I think I will ask Dr. Jones if I can take them out tomorrow!
Sunday, November 14, 2010
Tomorrow Starts Round 8
Wow. Eight rounds of chemo. I can't believe we are to this point. When Trent was fist diagnosed I thought people could only do four or five rounds. But tomorrow starts Round Eight and we are ready. Trent has had about 1/2 day of feeling pretty good so I guess it is time to make him feel crummy again. (ha, ha, ha) The last time he had labs all of his numbers were pretty good except his platelets. They were down to 41. Grace told us to keep him away from all knives and anything that could make him bleed. Not to hard of a job since he mostly lays on the couch or in bed! He is really low on blood so I assume he will be getting a transfusion tomorrow. Thank goodness we are scheduled early tomorrow. Hopefully we won't close the place down tomorrow!
We had a couple of visits from friends and family this week. Trent's cousin, BJ and his family came to see him. We a fun visit and shared a little picnic lunch in the basement. Then we had a friend from our ward in Providence stop by. It was really great to catch up and reminisce together.
All the kids are doing pretty well right now except Jonathan. He has really started to panic when we leave. It may be somewhat the age but I kind of think it has more to do with the situation than the age. The other kids have acted out occasionally but mostly they are doing great. We couldn't ask for better kids! We love them so much!
Last week my dad had the opportunity to meet with President Boyd K. Packer, who is the President of the Quorum of the Twelve in the LDS church. They talked about Trent and we learned that Pres. Packer has been keeping Trent's name in the temple. We also learned that Elder Sitati has been keeping Trent's name in the Ghana Temple. We have tried a couple of times to guess how many temples his name is in and we have been overwhelmed when we do so. It is very humbling to know that so many people are thinking about us and praying for us. I even have students from my employment, whom I have never met, emailing and calling to check up on us. We have had such wonderful support. I can't imagine going through this without it. It has really opened our eyes to all the suffering that goes on every day and how much more we can and should be doing to help alleviate that suffering.
Round eight, here we come!
We had a couple of visits from friends and family this week. Trent's cousin, BJ and his family came to see him. We a fun visit and shared a little picnic lunch in the basement. Then we had a friend from our ward in Providence stop by. It was really great to catch up and reminisce together.
All the kids are doing pretty well right now except Jonathan. He has really started to panic when we leave. It may be somewhat the age but I kind of think it has more to do with the situation than the age. The other kids have acted out occasionally but mostly they are doing great. We couldn't ask for better kids! We love them so much!
Last week my dad had the opportunity to meet with President Boyd K. Packer, who is the President of the Quorum of the Twelve in the LDS church. They talked about Trent and we learned that Pres. Packer has been keeping Trent's name in the temple. We also learned that Elder Sitati has been keeping Trent's name in the Ghana Temple. We have tried a couple of times to guess how many temples his name is in and we have been overwhelmed when we do so. It is very humbling to know that so many people are thinking about us and praying for us. I even have students from my employment, whom I have never met, emailing and calling to check up on us. We have had such wonderful support. I can't imagine going through this without it. It has really opened our eyes to all the suffering that goes on every day and how much more we can and should be doing to help alleviate that suffering.
Round eight, here we come!
Tuesday, November 2, 2010
Still Riding High!
We are still enjoying the good news we got last week. We are hoping it will carry Trent through this round of Taxotere. It is going to be a tough week physically but mentally I think it is easier knowing that the drugs are working. Hopefully the cancer cells don't get smart and become resistant. We are really praying for DUMB cancer!
We went down for chemo yesterday. It was the longest day ever! We had to wait two and a half hours before anything even happened. His labs came back critical meaning some of the numbers were too low to get chemo. So to remedy that, they gave him blood. However, they didn't have enough time to put in two units so he only got one. We left the hospital at 9:00 pm! The infusion room usually closes at 7:00. I felt bad for the nurses who had to stay with us, but Trent really needed the blood. Then today we had to go back down to get the other unit of blood. No one told Trent he needed to keep his transfusion band on so when they found out he had taken it off, they had to type cross him all over again. That usually takes about 1 1/2 hours. So today we got there at 1:15 and left at about 6:00. It should have only taken 1 1/2 hours total. After all of that, Trent is pooped.
We are going to change up the pain meds a little. The pain that he is having is a lot of phantom pain from the muscles and tumor that were removed. So he needs a medication for neuropathy. We are going to try Lyrica and see if that will help his body not get the surges of stabbing pain. While we were working through the pain med issue our nurse found that Trent was supposed to have an MRI in September and a follow up appointment with the surgeon. Somehow in all the hubbub of chemo that was overlooked. We have scheduled the MRI for Wednesday the 17th. They will look for any remaining cancer and also any new lesions. I expect that everything will be fine as there have been no issues at all with the healing of the incision on his side. But it will be good to talk to the surgeon and see what he says about getting some physical therapy to improve Trent's gait. I am a little worried about a regular schedule of therapy though, his good days are so sporadic that it would be hard to know when he could do it.
Trent was also told to try to start exercising to help with the fatigue. I am not sure how easy that will be! Some days he barely lifts his head off the pillow! But I know I feel better when I exercise and hopefully it will be the same for Trent.
We have been so touched by all the people who have shared in our joy at the progress Trent has made. It has really been an eye opener for us. We are not in this alone by any means. We are very blessed to have tremendous support from many, many people. You are truly inspiring to us and motivate us to be better people each day.
I haven't posted any pictures for a very long time so here is a recent one of our family. I really wanted to have our family pictures done at our usual time even though Trent is not looking like his normal self. It was a difficult thing to do, emotionally, but it was really important to me.
We went down for chemo yesterday. It was the longest day ever! We had to wait two and a half hours before anything even happened. His labs came back critical meaning some of the numbers were too low to get chemo. So to remedy that, they gave him blood. However, they didn't have enough time to put in two units so he only got one. We left the hospital at 9:00 pm! The infusion room usually closes at 7:00. I felt bad for the nurses who had to stay with us, but Trent really needed the blood. Then today we had to go back down to get the other unit of blood. No one told Trent he needed to keep his transfusion band on so when they found out he had taken it off, they had to type cross him all over again. That usually takes about 1 1/2 hours. So today we got there at 1:15 and left at about 6:00. It should have only taken 1 1/2 hours total. After all of that, Trent is pooped.
We are going to change up the pain meds a little. The pain that he is having is a lot of phantom pain from the muscles and tumor that were removed. So he needs a medication for neuropathy. We are going to try Lyrica and see if that will help his body not get the surges of stabbing pain. While we were working through the pain med issue our nurse found that Trent was supposed to have an MRI in September and a follow up appointment with the surgeon. Somehow in all the hubbub of chemo that was overlooked. We have scheduled the MRI for Wednesday the 17th. They will look for any remaining cancer and also any new lesions. I expect that everything will be fine as there have been no issues at all with the healing of the incision on his side. But it will be good to talk to the surgeon and see what he says about getting some physical therapy to improve Trent's gait. I am a little worried about a regular schedule of therapy though, his good days are so sporadic that it would be hard to know when he could do it.
Trent was also told to try to start exercising to help with the fatigue. I am not sure how easy that will be! Some days he barely lifts his head off the pillow! But I know I feel better when I exercise and hopefully it will be the same for Trent.
We have been so touched by all the people who have shared in our joy at the progress Trent has made. It has really been an eye opener for us. We are not in this alone by any means. We are very blessed to have tremendous support from many, many people. You are truly inspiring to us and motivate us to be better people each day.
Monday, October 25, 2010
The Tumors are Shrinking!
Consider this shouting from the rooftops! The tumors are SHRINKING! We are a million times past estatic about this news. We were both really anxious but I felt really good about coming today. We had labs at 11:30, Scan at 11:45 and then waited. And waited. And waited. Then waited some more.
We had a little snack then settled down to kill some time. Trent napped and I did my Larabee work. By 1:45 we were about crazy so we went to our Dr. appt hoping for some fast action today. It didn't quite work that way but at about 2:50 Dr. Gouw and Grace, his PA came in the room. Grace was behind Dr. Gouw and she snuck us a thumbs up sign and whispered to Trent as she passed that it was good news. I didn't know what to do! Then Dr. Gouw finally said the words we had been longing for. "The tumors are shrinking. And what's better than that, there are no new lesions." Trent jumped up and hugged him and Grace. I started bawling. Trent started crying. Happy tears. Finally happy tears!
We will do two more rounds of chemo and then another scan on December 6. At that point, hopefully we will look at surgery to remove what is left of the tumors. We are still working on our goal of being cancer free by Christmas. The news we got today is going to go along way for us. We really needed some good news and today was fantastic!
Dr. Gouw told us that a good part of our success was due to our attitudes. However, I beg to differ...I fully believe that our prayers have been heard and answered. Your prayers have been heard and answered. Thank you so much for all the prayers and fasting on our behalf. That is where the good attitude comes from. Knowing we have so much support and a loving Heavenly Father who know us each individually and knows how badly we needed a 'W' in the column today!
The battle wages on....
We had a little snack then settled down to kill some time. Trent napped and I did my Larabee work. By 1:45 we were about crazy so we went to our Dr. appt hoping for some fast action today. It didn't quite work that way but at about 2:50 Dr. Gouw and Grace, his PA came in the room. Grace was behind Dr. Gouw and she snuck us a thumbs up sign and whispered to Trent as she passed that it was good news. I didn't know what to do! Then Dr. Gouw finally said the words we had been longing for. "The tumors are shrinking. And what's better than that, there are no new lesions." Trent jumped up and hugged him and Grace. I started bawling. Trent started crying. Happy tears. Finally happy tears!
We will do two more rounds of chemo and then another scan on December 6. At that point, hopefully we will look at surgery to remove what is left of the tumors. We are still working on our goal of being cancer free by Christmas. The news we got today is going to go along way for us. We really needed some good news and today was fantastic!
Dr. Gouw told us that a good part of our success was due to our attitudes. However, I beg to differ...I fully believe that our prayers have been heard and answered. Your prayers have been heard and answered. Thank you so much for all the prayers and fasting on our behalf. That is where the good attitude comes from. Knowing we have so much support and a loving Heavenly Father who know us each individually and knows how badly we needed a 'W' in the column today!
The battle wages on....
Friday, October 22, 2010
Monday's Scan
I have really been avoiding the blog lately because it is reality hitting me in the face from just one more angle. The last couple of weeks have been hard again with the Taxotere but better because of the Claritin. Still so weird to me that an antihistimine would make a difference in chemotherapy. But it worked so I am not complaining.
Trent is just barely starting to feel better today after the last dose of chemo. His counts dropped to a new low for him. On Monday he had just 19 platelets and was neutropenic again. But by Thursday his platelets were back up to 41. That is still way lower than the required 100 to do chemo, but I am sure he will get there by Monday.
Monday is the day we have been waiting and preparing for for the last six weeks. We are anxious about what we will hear but ready to meet the next challenge. Zach summed it up really well in a paper he had to write for school. He said, "...we are worried, but happy." We are happy. That does not mean we are not scared, but it does mean we have hope and faith. Lots of faith. We are doing all we can to get a miracle!
We will be fasting and praying on Sunday that the spots in Trent's lungs will be gone. Any who would like to join us would be greatly appreciated! Thank you all for all of the love and support we have been shown through this trial. We could never endure without all the extra strength we get from you. I have learned over and over again that the Lord IS mindful of us. How grateful I am for a loving Heavenly Father guiding us each day and lending us the extra love and support that we so desperately need right now.
Just two more days....
Trent is just barely starting to feel better today after the last dose of chemo. His counts dropped to a new low for him. On Monday he had just 19 platelets and was neutropenic again. But by Thursday his platelets were back up to 41. That is still way lower than the required 100 to do chemo, but I am sure he will get there by Monday.
Monday is the day we have been waiting and preparing for for the last six weeks. We are anxious about what we will hear but ready to meet the next challenge. Zach summed it up really well in a paper he had to write for school. He said, "...we are worried, but happy." We are happy. That does not mean we are not scared, but it does mean we have hope and faith. Lots of faith. We are doing all we can to get a miracle!
We will be fasting and praying on Sunday that the spots in Trent's lungs will be gone. Any who would like to join us would be greatly appreciated! Thank you all for all of the love and support we have been shown through this trial. We could never endure without all the extra strength we get from you. I have learned over and over again that the Lord IS mindful of us. How grateful I am for a loving Heavenly Father guiding us each day and lending us the extra love and support that we so desperately need right now.
Just two more days....
Monday, October 4, 2010
Stay in the Present
Is this week over yet? Dang, six days to go. It's gonna be a long one! We are here at the Huntsman for Round 6 and a blood transfusion. Trent's bone marrow is just not bouncing back the way it did the first few rounds. So along with chemo he gets a juicy little elixir of blood. Kind of sickening to watch it go in-not out. Trent has been super tired lately but other than that, okay. We are gearing up for another go around with the Taxotere next week. The docs have given us some pointers and new meds to combat the terrible pain that Trent endured last time. They said it doesn't usually hit people quite that hard. Leave it to Trent to be the odd man out. It seems like if there is a weird side effect or symptom, Trent gets it.
We had an eventful weekend in Idaho. Trent even went swimming with us. He said it felt really good to be in the water but was soooooo exhausted afterwards. He attended the Priesthood session of conference with his brothers and dad and had a nice time. I am sure it will take a few days to rest up after his travel--just in time to be knocked down again by chemo. What a cycle! I know Trent is really looking forward to a time when he doesn't feel tired.
Lately I have had a very hard time not imagining the future and what it may hold. Not a pretty picture. I feel almost as if I am betraying Trent or giving up if I let myself wonder if I am making memories or if this will be a memory. But I had a great visit from two friends today who helped me remember that God is mindful of me individually. As we were speaking they both said at different times, "Stay in the present." That is really what I needed to hear and I know that is what the Lord wanted me to hear. I am so grateful for those who allow themselves to be instruments in God's hands.
We had an eventful weekend in Idaho. Trent even went swimming with us. He said it felt really good to be in the water but was soooooo exhausted afterwards. He attended the Priesthood session of conference with his brothers and dad and had a nice time. I am sure it will take a few days to rest up after his travel--just in time to be knocked down again by chemo. What a cycle! I know Trent is really looking forward to a time when he doesn't feel tired.
Lately I have had a very hard time not imagining the future and what it may hold. Not a pretty picture. I feel almost as if I am betraying Trent or giving up if I let myself wonder if I am making memories or if this will be a memory. But I had a great visit from two friends today who helped me remember that God is mindful of me individually. As we were speaking they both said at different times, "Stay in the present." That is really what I needed to hear and I know that is what the Lord wanted me to hear. I am so grateful for those who allow themselves to be instruments in God's hands.
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