Nick and Karalynn: August 2011

Wednesday, August 24, 2011

Update

Dear Family and Friends: Chuck had his appointment with the new Dr here. He is Dr Manning and is from Huntsman. It was really nice to have a Dr. that knows the surgeon and our Dr from Huntsman. We spent well over an hour with him and we were his second patient. He had really studied Chuck’s history and knew everything he had been dealing with. He agreed with the treatment plan from Huntsman to not have more chemo yet. He did not want to wait until Oct for a PET CT. He wants it in Sept. 4 weeks is long enough he said. He also was definite about having the PET CT at Huntsman because they have a better machine (I don’t think that MISTI has a PET CT) and he trusts the radiologists there that read them. His plan is see what the PET shows and go from there. If it is clear then he will have another one every three months. If this last one round did not work as well as we had hoped then we will look at surgery if it is possible and if there is too much in the liver we will look at liver directed chemo or isotopes again. So prayers for a good PET are now in order. He is still feeling weak but has times when he feels a little better. No rhyme or reason for it either. I know the further out from treatment he is the better he will feel. We appreciate your love and support and we just keep moving along and having faith and courage. Okay, well, faith anyway. Love to you all. Jolene

Tuesday, August 9, 2011

Update

Dear Family and Friends: Chuck had his chemo today. His blood was evidently high enough to get the treatment. He didn't see the Dr. this time. This is 6 of 6 and we have an appointment with Huntsman on October 8th for a PET scan. He is very tired most of the time but I think is overall doing fairly well. He has to wear the pump for 48 hours and that seems to be the chemo that makes his more sick. After 2 weeks he should start feeling better and then we are going to party party. Okay maybe not too much but it will be nice to have him feel a little better. We had Chuck's family reunion at our house and it was a lot of fun. He got tired but overall I think did very well. He sure enjoyed having his family around. His fistula is almost closed again but still is an inch deep. The last time we talked to the surgeon she felt the only way it will heal will be to do a colostomy and if that is what it takes that is fine. The hard part is that it is another surgery to do. He says that after the PET scan we will have a frank discussion about life expectancy before we do more surgery. I will let you know if there are any changes or even anything interesting happening. We love and appreciate you all. Love, Jolene

The Mother of all Updates

January 12:
Dear family and friends: Chuck had his chemo today. He has probably felt better the last week than he has all year. His blood work looked good and he seems to be doing well. He will not have another treatment until we see the oncologist at Huntsman on February 3rd. His drains have slowed down and he has had less pain with them. He has had some good luck this last week, he won an IPAD at a growers meeting he went to for work. He told the young guys at work that really wanted to win it that he pawned it for $200. to put toward a gun. They didn't believe him. He has enjoyed it but now he can surf the web while he gets chemo and when he is relaxing in his recliner. He can also bid on e-bay. Could make us broke. We got our pickup back from the body shop from his accident. He is not sure it is quite right but it is too late now to say we don't want it. Not that they would have agreed to it. I am attaching a picture of the pickup before it was fixed. You will see why I freaked out. We continue to be thankful for your love and support. Love to you all. Jolene

February 2:

Dear Family and Friends: We are off to SLC for our appointment with the oncologist. We are praying for some good ideas from her. We are going to stay the weekend and visit with Chucks family in Provo and see some friends that have moved there this year and some old friends that we haven't seen much for 30 years. Should be a good weekend. He is feeling pretty good most of the time. Still has pain in his stomach and his feet bother him off and on. We have received e-mail that asparagus cures cancer so since he loves asparagus he is all over that cure. I wonder if it is like garlic and he is going to start to smell like it. I will let you know what the Dr says. Love to you all. Jolene

February 7:

Dear Family & Friends: We are back and had a really nice weekend visiting with friends and family while in Utah. Not really good news from the Dr. She said he really is not curable but she is not ruling out surgery on his liver and had a couple of other options to use to prolong his life. Our downfall was all the infection from the abscesses last summer so he couldn't get on the chemo. It just gave it too much time to spread and grow. He will do 3 more treatments of chemo and we will go back in March for another PT scan and then she will make some decisions. She said there is a new treatment (It is new enough that she says it is still considered "sexy") where they go in through the femoral artery and give chemo directly to the liver in the spots where the lesions are. These are smaller than the size of a hair. She has one patient that has not had to do any chemo for 10 months with this treatment and it usually lasts at least three months. There is also the options of ultrasound and isotopes. We really like this oncologist and feel like she is good, but she told us that she is moving to Corvallis Ore in June. We were not happy to hear that. We may have to make some trips to Oregon. Chuck is feeling pretty well right now and only has pain in his stomach which we are still not sure why but he is so much better than he was that we are thankful for that.
We are doing well and dealing with this on a day to day basis. We appreciate your love and concern and thank our Father for you daily. Please continue to keep us in your prayers. Love to you all, Jolene

February 23:

Dear friends and family: Another round of chemo today. This will be #2 of the three that he has to have before we go back to Huntsman. The chemo he had 2 weeks ago seemed more tough on him than they have been in the past. Not sure why. Most of the time he is in pretty good spirits and feels pretty good too. His stomach is still hurting off and on and we are still not sure why and his feet are a little more sensitive than they were. He says he feels like he is walking on rocks. His blood work was good so that was good news. We are enjoying one day at a time and appreciating the little things in life. Karalynn is here with Ben and taking care of Jennifer's kids while they are on a cruise with some friends. She spent some time with Chuck at the chemo unit and that makes the day go faster for him. We keep moving forward with faith and hope and we really appreciate your concern and prayers. We really feel them. Love to you all. Jolene

March 9:

Dear Family and Friends: Chuck is having chemo #3 today. His white count is borderline but the Dr. went ahead with the treatment and dropped the dosage just slightly. Hopefully he won't have any infection or problems before we go to Huntsman a week from Friday. We will leave Thursday after work and he has a PT scan early and then we will see the oncologist later in the afternoon. All of his other blood work looked really good. He is kind of down today. I would have a hard time too if I knew that I would have to be miserable after treatment. He has his IPAD so if you are near email send him notes of encouragement or something funny. He will be there until about 2:00pm. We continue to move forward with hope and faith and courage and we really appreciate your thoughts and prayers and concern. We love you all. Jolene

March 15:

Dear Family and friends. This round of chemo has been really rough. Chuck was pretty miserable on Sat and down all day Sunday. He slept most of the day and then slept all night. He stayed home from work on Monday (You know he is miserable when he does that) and slept a lot. He started having pain at the drain site again and now it looks like it is infected again. We are keeping heat on it and I guess will see what happens. He has not run any fever. I think it is just because his white count was too low and we probably should not have had the chemo. We just hated to put off the appointment at Huntsman and that is what we would have had to do. We are still planning on going on Thursday and he will have his PT scan on Friday morning and his appointment with the oncologist in the afternoon. I hope she has some good ideas that don't include chemo. He needs a break from it. We are going to spend the weekend in SLC and come home on Sunday. I hope he feels well enough to enjoy the weekend. I will let you know how it goes. Continue on with your prayers. We really appreciate them. Love to you all. Jolene

March 21:

Dear Family and Friends: We are back. To update you, the fistula or drain site did break open again and was infected. We are packing again and he is on antibiotics. The PET scan was a preliminary because we saw the DR's on the same day but shows the chemo has worked well and the lesions are "dead" or not PET active except one small nodule that they felt could be removed easily by surgery or ultrasound. The problem is they were concerned about the fistula or drain site because of the infection and it not healing they think there may be cancer in the site so they did a biopsy on the outside of the site and on the inside at the "leak". It would not be the norm for there to be cancer there but Chuck has not done anything normal yet. If it is more cancer then that would be a game changer and he would have to start radiation on that site to stop it. They will present his case to the tumor board tomorrow and decide what to do for sure then we will hear about the biopsy on Friday and move forward from there. We appreciate all your thoughts and prayers. I will let you know when we hear anything new. We had a good weekend and Chuck felt pretty good for most of the weekend. His feet still hurt quite a bit and now of course his drain site hurts too. Nonetheless we move forward with hope and faith. Love to you all. Jolene

April 1:

Dear Family and Friends, We did finally hear from Huntsman. Evidently there is no cancer at the drain site because they have decided to do surgery on the 12th of April. He does not have to have chemo before (to sandwich the surgery between) because he had it recently so I imagine he will have more after surgery. He was pretty miserable over the weekend last weekend. Very tired and sore and just felt sick. He slept most of the day. He is feeling better now but his feet still really hurt. When Huntsman called yesterday to say they wanted to do surgery they said there are three lesions on the liver??? We thought there was at least 6. They said they felt good that they could remove them all with surgery. I am not sure what they mean but we will talk to the surgeon and the Oncologist before the surgery. Karalynn wondered if they were reading a PET scan from March 2010?? He questioned the PA that was scheduling the surgery and she said all she knew was the Dr. said the Chemo had worked very well. We are still working on the drain site with packing etc, but it looks to me like it is going to be healed in a week. I hope so. It is really not uncomfortable now. We still appreciate all your thoughts and prayers and know the Lord has blessed us in so many ways. We both still have a job and insurance so we are thankful for all of those things. Please continue with your prayers. I will let you know if anything changes. Love to you all, Jolene

April 11:

Dear Family and Friends: We are off to Salt Lake this evening. He has a pre-op and surgery tomorrow. We won't know what time until he calls them today after 2:00. He started taking Lyrica for his feet this last week and has not been feeling too well. I believe it is side effects from the medicine but he is tired and sometimes kind of achy. I believe his feet are a little better though. It is hard to decide if he should take medicine or not. Sometimes the side effects are just worse than the symptoms. I understand that you get used to the medicine so that is what we are hoping. We still don't know anymore about the surgery than we did before. Chuck thinks it will be laparoscopic and I am not sure. I don't remember them saying anything about it. I was more worried about the biopsy at that time. I sure hope it is because it will make his recovery faster. We went to Adam's for the weekend for Michael's baptism. Karalynn and Ben went with us and we had a really enjoyable weekend. Now off we go again. Keep us in your thoughts and prayers because we need it this week especially. We appreciate you all and continue on in faith and hope. Love to you all. Jolene

April 12:

Hello all, Adam here. Dad is out of surgery and doing well. The doc removed all 5 lesions that showed up on the PET scan. 8 new lesions were seen, one was biopsied and was a mangionome, I think, but was not cancer. The others were biopsied but won't have the results for 5 days. The doc didn't check out the drain site. They did open him up, didn't use a scope. He wanted to be back to work on Monday, but may need to take another few days to recover. Mom is in good spirits, but isn't sure whether to be happy they got the five lesions, or worried that there may be 8 more. Your thoughts and prayers are appreciated! I will let you know if anything more develops. Adam

April 15:

Dear family and friends, The report said that all of the biopsies that she took came back as not malignant. There were the ones that she removed that were cancer and there are still two by the arteries that are questionable. They were not biopsied and cannot be removed because it would destroy the whole liver. Anyway it was very good news that the 8 spots were not cancer. There is always the chance that there is a stray cell hanging out in there. He will have more chemo as soon as he is well enough, to try to cover anything missed. We will really not know the plan until we go back to the oncologist. It is great news but we are not going the cancer free route yet.
Anyway, we did get home today and it is at least a day earlier than I thought was even possible. He is very very sore and his incision is 14" long. He says he feels like she sliced him in half and bent him backwards so they could crawl in and look around. She probably could because she is so little. He will be lifting up his shirt for everyone to see. He deserves the bragging rights. He is going to be really sore for a few weeks and has to be really careful. He has done really well but will need to get lots of rest. We are really glad to be home. We really appreciate you love and prayers and we know they have helped us all along the way. I will continue to update. Love, Jolene

April 20:

Dear Family and friends: We heard from the oncologist yesterday and she does not believe they got all of the cancer out of the liver. She wants him to do 6 more cycles of chemo and then wait 4 weeks and do another PET scan. He was pretty depressed about having to do chemo for the whole summer. He would start about the 1st of June and go every 2 weeks. We went to Glen today to have his staples removed and he looked at his drain too. It is doing well but still has at least an 1" to 1 1/2" to heal. I hope it will really heal completely this time. He is still very weak and sure is sore and feels pretty discouraged. I think it is mostly because he feels so weak right now. He is walking every day and I know that helps. We are having some of the kids here for Easter weekend and the grandkids will keep him busy I am sure (or else he will be hiding in his man cave or the bedroom). It will be fun. We continue to move forward with hope and faith and appreciate all your thoughts and prayers. I will continue to keep you updated. Love to you all. Jolene

April 29:

Dear family and friends. We are in Salt Lake for the post op check. The surgeon was encouraging. She believes she got all the active cancer. She seemed to think some of the very good news was that everything that showed up on the PET scan was what was cancer so the PET scan was accurate. I guess sometimes they are not. She did not take biopsies of the two lesions by the blood vessels but thinks they are the same as the other non cancerous lesions. She also believes that he will have to have a colostomy. She doesn't think the fistula will heal without one. She said we would wait until we do the next PET scan and then decide what route to take. So we continue to pack and treat (we are sure glad we have Glen to help us.) Chuck has a cold now but we feel very blessed that this is the first time he has had any sickness since he started this whole thing. With all the chemo etc. I am amazed that he hasn't had more. Chuck is feeing stronger and working part time. We did have a good Easter weekend. Adam and Kelly didn't come until Sunday because the kids were kind of sick. Hmmmmm. Karalynn and Nick came Sat. so we really had a good time. We got a beautiful basket full of Easter goodies from my dear friends at Child Support. My grandkids made short work of the treats. We sure do appreciate all the love and concern and prayers that have been offered on our behalf and I do know that miracles happen because of faith and prayers. We love you all and I will continue to send out updates. Love to you all. Jolene

May 25:

Dear Family and Friends:
I know I haven't updated for a while. We have been just moving along. Chuck has felt pretty well with no chemo for a few weeks but still gets very tired after working all day. He has been having a lot of pain in his left arm about at his elbow. I was sure it was a pinched nerve in his neck but the orthopedic surgeon didn't want to touch him so soon after his surgery, so we had to get a hold of Huntsman and they requested a ultrasound to make sure it was not a blood clot. It was a long way from his liver but I know they can travel, so there was no blood clot and he saw the surgeon yesterday and it is a pinched nerve. He started on physical therapy today and will have it a couple of times a week until he has some relief. He has spurs on his spine and it is an age thing and all those years of watching equipment behind him in the tractor. I hate for him to have to have more pain. He has had to sleep in the recliner to get relief. Of course he continues to work. We went in to meet the new oncologist last week. She is a little Asian woman and said to call her Dr. P. We can't pronounce her name. We liked her and she has been practicing for about 10 years. She did a blood test on him and they called yesterday to give him the results. Everything is looking good but his Cancer Marker was up slightly. It makes us nervous of course but the nurse said they watch the trend. Everything else is really good for starting his chemo. He has his first dose on June 1st. I hope he will tolerate this as well as he has in the past. We continue to be hopeful and cautious at the same time. I will continue to keep you informed. The kids (except Andy and family) are coming home for the memorial day weekend and we are looking forward to having them. We hope you all have a good weekend too. Don't forget us in your prayers. Love to you all. Jolene

June 7:

Dear Family and Friends. We are moving along. Chuck's arm and shoulder are much better. The physical therapy seems to be working well. He is sleeping in bed most of the time now. He had his first Chemo on Wed and by that evening he is feeling pretty rough. He didn't do much over the weekend but go to church. It is amazing how quickly he feels the side effects other than the nausea. His hands were sensitive to cold by about 4:00. It take about 2 hours. He is starting to feel better today and didn't sleep as much in the evening last night. Not much else happening just zipping along. We still feel your love and prayers and thank our Father for you daily. Love to you all. Jolene

June 15:

Dear Family and Friends: Chuck is having his chemo again today. His blood count was down a little but still high enough to keep going. Four more after today. He was kind of dreading it today. It makes him feel like he has a bad case of the flu. Just aches and sleeps a lot and some nausea the first evening. I remind myself that this is a good thing because we know the chemo is still working well on his cancer. He is so much better than he was last summer that we are thankful for just the side effects of chemo. He is still working and we are planning on going boating at least a little this summer, if we ever have summer. We appreciate all your prayers and love and concern. We continue on in faith, hope and hopefully a little courage too. Love to you all. Jolene

June 28:

Dear Friends and Family. Chuck is having his chemo today. He is half way done today!! He saw the Dr before I could get there and they didn't have his blood tests back but they must have been okay because he is getting his treatment. Jennifer and Brittany are there visiting him now. He didn't bounce back as fast this last time. His feet have been hurting more and just over all felt a little worse. It is to be expected. The more chemo he gets the more it seems to build up in his system. He rested a lot over the weekend and was ready to go to work again on Monday. I know he gets discouraged because it seems this has just been going on forever. He will be in chemo for a few hours so, if you feel inclined, send him an email, if for no other reason than to just bug him. :) We really appreciate your love, concern, thoughts and prayers. We feel like you have all been hanging in there with us. We continue on in faith and hope. Love to you all. Jolene

July 12:

Dear friends and Family. Chuck is having chemo #4 out of 6 today. We are thankful that his blood work is good enough to do it. His back has been hurting lately but the neck is better. He needs to do exercises that the physical therapist has told him to do but his fistula (the ugly beast) broke open again and was really sore so that prevented the exercises. It is looking better today but is again about 2 to 3" deep. It does hurt less now. He is also having trouble with his speech. He has neuropathy in his tongue. I guess it is not the norm but they did a CT scan on his head the last time to make sure he didn't have any cancer in the brain and it was clear and the speech cleared up after the chemo so I guess he is just abnormal (Not that we didn't already know that). He does hate it though. It is like he has a stutter. It seems to make a difference how tired he is etc. What we have to do to really learn empathy. We are having Chuck's family reunion at our house in two weeks. It is his 60th birthday and our anniversary too, well, a day apart. He wants to postpone his next chemo or he will be having it those days, so we may be out a little longer on finishing up. We feel your prayers and thoughts and continue to need them. Love to you all. Jolene

July 13:

A quick update on the update. I guess the Dr's are more worried about his speech than I thought. They have scheduled an MRI for next Wednesday. He was pretty miserable last night with nausea but doing better this morning. Of course he is at work. Keep on praying. Love, Jolene

July 21:

Dear Family and Friends, Chuck had his MRI at 7:30 am. He wanted to cancel because his speech is much better but he has been having extreme weakness and feeling sleepy so I encouraged him to have it anyway. We went back in at 2:00 pm yesterday to see the Dr. and see if there is any reason he should be so tired. We were there for about 2 1/2 hours waiting for the test results. The MRI came back normal. (He does still have a brain) They did more blood work to see if there was something else like more infection than we know about going on from his fistula. Everything came back okay. No really high or low white cell count etc. He has been having some tenderness around his waist on the right side and I thought maybe he was getting shingles but the Dr said that it probably wouldn't cause him to be so tired just pain from the shingles. He hasn't broken out so they just don't know if that is what it could be. It started on Sunday and he just slept most of the day. I just wanted to let you know what was going on. We are thankful that the MRI came back good. We continue on in hope and faith. Love to you all, Jolene

Family Reunion

Two weeks ago, we went to Bear Lake for a reunion with Nick's family. The weather was perfect, minus the little sprinkle we had the last morning. Oh, and the mosquitos ate me alive. Other than that, it was perfect.

Nick, of course, managed to squeeze in a little fishing trip with Matthew one morning at a little creek nearby. Here is the proof of their success.
Matthew and Brittany spent a couple hours one morning building Ben a swing. He loved it and didn't want to get out. The fact that the swing was a little tight helped his cause - we about had to break his legs to get him out. Yes, I realize now that it would have been easier to take the swing apart than to break his legs. Luckily both the swing and the legs are still intact.

The girls were busy catching butterflies. Ben was busy catching - himself.

The boys were shooting guns, and Ben thinks he needs to run with the big dogs. These earplugs were just a bit too big - he could barely get his hat on.

Matthew was such a trooper. He took Ben on several four-wheeler rides, around and around and around. Ben held on to the handlebars where Uncle Nathan showed him and just soaked it all in. Every time Matthew would stop, Ben would say "Go go go!" So they would go another couple rounds.

The Big Freaky Dog

Last week, we went to a Boise Hawks baseball game. Surprise! Clifford was there. We got in line to get a picture of Ben with Clifford. At the end of the line, Ben was pretty excited. The closer we got, the less excited he became. When it was our turn, he was almost shaking he was so creeped out. I tried to get him to touch Clifford, but he wouldn't even look at him, let alone touch him. This is the best picture we got.

Thursday, August 4, 2011

Chicken Chase

Oh what the heck, I might as well post these while I'm at it. We went to Matthew and Madison's baptisms back in April. Matthew is Ben's only boy cousin on Nick's side, and he LOVES Matthew. And Matthew is so cute with him. Ben will drag him around and wants to play with him all the time, and Matthew keeps him thoroughly entertained. Matthew is the one in the camo jacket.

So here is the chase:

Notice Nick on the side, egging him on. Ha ha, get it?

Success! He had a great grip right on its neck. That thing wasn't getting away. Nick had to rescue the poor thing before Ben choked it to death. Nathan said it had a permanent kink in its neck for the rest of its life. Which wasn't very long.

Ben's Chores

It is Ben's self-appointed duty to take out the garbage and do the laundry. He gets really excited when he sees an empty milk carton on the counter, because he gets to take it out to the recycle bin. He has to take the garbage bag too, but it's a little heavier and harder.
Look at my tough little boy. Isn't that the cutest thing?

I don't know why, but he loves doing the laundry. It still takes a little supervision. But it's so cute to hear him grunt a little when he's pushing the clothes into the washer, or trying to pull a big handful out. The only problem with this setup is that he goes nuts with the controls. If he had his way, everything would be washed in hot hot water with no rinse, and dried on high heat, and who knows what else. Make sure you always check all the settings before you start anything!

Baby Robin

Nick's brother has (or maybe had?) some chickens. One time we went to visit, and he let a couple chickens out so Ben could chase them. He caught one, and thought that was great fun. I think I have some pictures of it - when I get around to posting about the last few (eight) months, you just might see them. Anyway, now anytime he sees a bird, he thinks he needs to chase them. We have a robin's nest in our back yard, so he thinks he needs to chase the birds quite often. The robins are a bit quicker than the chickens, and he never manages to catch them. Until one day...
There was a baby robin that was just learning how to fly. He couldn't get up over the fence and was kinda slow, so it was the perfect opportunity for Ben to practice his bird-catching skills. I don't know if you can see it in this picture, but the little birdie is hopping through the grass, with Ben right on his tail.

I think he kind of expects the birds to be faster than him, so when he caught up to this one, he wasn't sure what to do. Nick caught it for him so he could touch it, and he wasn't sure that was a good idea at the time. But after a little coaxing, he finally touched it. Turns out it was kinda neat.

Then he wanted to hold it. It was pretty fun, until the crazy thing started moving around in his hand. Then, of course, you just drop the bird. The mama and daddy robin were going nuts, flying around our heads while we were playing with the baby. Then I started to feel sorry for the mama - I don't exactly like it when strangers are fondling my baby either. Especially giant aliens. So I took my boys back in the house so they could rescue their baby.