A Quick Update and #ShareTheGift

HELLO! It has been a while since we posted! Hurray for that! :) That means the scariness is behind us. :)

Kent has been doing quite well. He still has a long ways to go in recovery, but he is making progress. He still can't feel his hands and feet most of the time, he still gets so easily exhausted by the smallest thing, and he still has pain from his last surgery. There are some side effects that are permanent, but we are simply grateful for his life! But he feels SO SO SO much better than during chemo. He says he almost feels "normal" again. We are so grateful the Lord has strengthened all of us in various ways to handle this situation.

With Thanksgiving here and Christmas on its way we have realized that the holidays will have a very special place in the Barker home this year. In January we were originally told Kent had at most 6 months - 1 year. We read the statistics online and they report almost NO survivors for Appendiceal Cancer by the 5 year mark. We were stunned and I vividly remember thinking, "He has to be here to take Kennedy trick-or-treating, to have Thanksgiving, to watch Kennedy on Christmas morning, for his birthday, for our 4 year anniversary, ...." The list went on and on! I couldn't believe I might be a widow by this time of the year.With treatment we were given the hope of more time, and now, just a few short weeks ago Kent was declared cancer free and told he should have many more years ahead of him! The relief that brought us I can't even express! I admit, I still worry. February 1st 2015 will be a celebration day when we have officially passed the 1 year mark. In truth I am probably still going to worry until February 1st 2019 when we have passed the 5 year mark, and probably even a little bit for the rest of his life. However, I know the only reason we have gotten through this year is through the help of our Lord and Savior. We have been strengthened greatly as we have been pushed beyond what we thought was possible. Everyday we could feel the Savior's loving hand in our lives.

So, I know nothing about hashtags/#. They REALLY confuse me. However, mormon.org is sponsoring a big campaign that is #ShareTheGift. I don't Twitter or whatever you are supposed to do with hash tags (I sound like a little old lady!) but I thought I would share that here. Share the Gift of our Savior. Christmas is a time to remember the goodness of the Lord in sending us His Only Begotten Son. He came in humble circumstances, which I think is part of why we remember Him most when life humbles us. Although He started in such humble circumstances, He grew to the incredible example we learn of in the scriptures. He atoned for our sins and was crucified for us so that we can always turn to Him for strength and courage and guidance and comfort, and for EVERYTHING! I know the Barkers have truly been grateful for the gift of our Savior this year and how He strengthened us and guided us through what seemed impossible. I know several individuals, including my sweet Great-Aunt, who are facing their own fear of a cancer diagnosis right now. Just remember, so many people will ask you what you need during this time but the greatest Gift you will need through this trial has been given. He came as a little babe in Bethlehem and is mindful of you every moment of every day. He WILL strengthen you and your loved ones, I promise.

FABULOUS NEWS!

We have some FABULOUS NEWS! Today we got the pathology report and, if I understood it correctly, Kent is officially CANCER FREE!!!!!!! Wow! Those words just sound so incredible! It was shocking to hear. We didn't exactly hear those words but pathology said there was no residual adenocarcinoma and no metastatic tumors in the lymph nodes. The surgeon said "Basically, it is really good news." That is all he said. Our interpretation of the "no cancer found" means, NO MORE CANCER!!!! We are SO unbelievable excited! I think we were pretty much in shock for the first several minutes after hearing that news, and then I just wanted to cry. What a blessing it is in our family. We are so grateful that the Lord blessed us in this. Our prayers were heard and answered.

Ok... here is a quote overload, but I feel they are ALL so appropriate! I am just so grateful to witness this miracle in our lives!

Surgery

It is done! Kent had his surgery and all is well. We really don't know a whole lot, but we do know that they said surgery went very smoothly. He had minimal blood loss and they removed everything they had planned and a little bit more. He had some adhesions and "bands" that needed to be removed. They said they could have resulted in another emergency surgery had they been left alone, but they were glad that they were able to remove them safely. :) They also removed his port, which Kent is glad to see the end of. No more chemo!!! :D So, including his port location he has 5 incisions. The other 4 are, obviously, in his belly. He has 3 small and one "larger" whatever that means. We will probably get to see them tomorrow and will know more once talking to the surgeon again.

He is recovering decently. He is in a lot of pain unfortunately, very dizzy, nauseous, and it is very hard to move. He has had a few complications regarding the sum of everything (the medicine, the anesthesia, the surgery itself, etc) but they have been able to resolve everything so far. Such a blessing! Through it all, his spirits are high though. He already wants to walk, eat, drink, etc. so he can leave! He definitely isn't able to do it all yet, but he certainly wants to. He wants to come home to recover and be with all of us again.

They sent some stuff away to pathology so we just wait for that now, and we are waiting to hear about other blood tests, but we are hoping all comes back normal. No more cancer! We refuse to participate! :) We really just have so much to be grateful for. The Lord has blessed us immensely. There has been a lot of praying and fasting today on our behalf, and we are truly grateful. The Lord has answered our prayers and got Kent safely through surgery, without complications. We know that the Lord guided the hands of the surgeon and all who assisted him. We are grateful for all the kindness the nurses and staff have shown. Now, we continue to wait and pray for continued success and blessings in Kent's recovery. Thanks to all of you for the support, love, and prayers!

I just have to say how much I love this quote. The Lord truly has blessed us in very personal and individualized ways. We have witnessed all of the blessings mentioned. Although it has been a trying journey, we know the Lord is always mindful of us and has NEVER left us alone. The blessing of knowing that our Savior Jesus Christ knows what we are experiencing and how to comfort us is such a tremendous blessing we are eternally grateful for.

It's a Date

We officially set a date! Or, a tentative date? We were told it will be this day and then the surgeon told his secretary he will decide officially later... oh well. We are planning on it now, so the surgery is set for September 24th. Yikes! It is coming up so quickly. Kent is starting to feel a little bit better, finally able to do more, and we are going to flatten him again. However, this time will be the last time! Then we are done!

So if we understood everything, and truthfully we left quite confused, the following is taking place during the surgery:
- The right third of his colon is coming out.
- The tissue and lymph nodes in that area are coming out.
- The section of colon they previously had removed a piece of is also coming out.
- They are going to "explore" and check the exterior of the rest of his colon for any new lesions, tumors, etc.
- They are going to continue exploring and check his liver to make sure there are no visible tumors. (If there are a second surgery will be planned, and maybe more chemo? Pray there aren't any!)

So that is the plan. He also mentioned checking Kent's lungs for any tumors but I think he just meant in the pre-surgery CT scan. In the mean time, the CT scan and some blood work will take place, and then we wait.

Yikes! It is all rather daunting, but we are anxious to be done for good! No more worrying, just moving on. :)

We wanted to thank everyone again for all the love and support! You helped us get through this! We love you all so much! We also know the Lord has strengthened us. He has guided us in every step and continues to do so, for which we are truly grateful.

* The likelihood of there being any tumors in his colon, liver, or lungs is "very small". Doesn't mean the cancer hasn't spread, doesn't mean there won't be any at a later date, but they think that since his cancer was slow growing that it won't have formed any noticeable tumors at this point. We are just planning on the chemo having taken care of everything though.

OFFICIALLY DONE!!

We are OFFICIALLY DONE!!!!! It was such a wonderful feeling to go and know we won't be going back in 2 weeks for another treatment. It is just time to start feeling better now. What a blessing. In some ways it is a little bitter sweet. The nurses and other staff members there have become very dear to us, and to say goodbye was hard. It is wonderful though that we are just DONE! YAY!!!! Kennedy came with us and awed everyone. They all just love him. He was acting pretty shy, but still was glad to wave at everyone. :)

We both came home and cried. Kennedy just kept staring at us like we were crazy. It is just so surreal! It is hard to believe we won't be back for another infusion. It is such a relief though. If we could make it through all that happened, then we must be able to make it through whatever comes next.

Thank you all again for loving us and supporting us!

Waiting for the disconnect!

We are DONE!!! :)

This comic made Kent laugh really hard. :)

Almost there!

The beginning of the end! Kent got the initial infusion of medications and now he is hooked up to his pump. Thursday around 12:00 he is DONE!!! Hurray!!

Kent is already totally miserable, but he is just glad this is the last round. So far the worst symptom? Hiccups. He hasn't gotten them every time, but this time he had them for a few hours. ugh. But we finally got them calmed down and  he feels a bit better. 

We spoke with the doctor about a lot of stuff, and he is still super optimistic. He was in an especially good mood yesterday, so he was really animated. :) Some of what we discussed were the many "cures" people have told me. Weekly, if not daily, I get told that if Kent will do/eat something then he will be cured. That chemo is a waste of time and that by choosing not to follow their suggestion it is completely my fault when my husband dies. Not the nicest thing to hear. The doctor turned to me, and using some very choice words I am choosing not to repeat, told me to quote him when people say that. The gist of the statement was "My oncologist says you are nuts." He said he always hears about how chemotherapy is a conspiracy to get money, that oncologists are keeping the cure a secret so they can torture people and get paid for it. He said he wishes he could pull the cure out of his pocket and make all the suffering end, but for now chemo is the best thing we have. I agree. There are some more holistic things that can help, and trust me, we are trying them too. :) 

We also discussed the upcoming plan which was comforting. The current schedule of events is:

- 4 Weeks, meet with the surgeon

- 5 Weeks, follow up with the oncologist

- 6 weeks surgery

- About 8 weeks, follow up CT scan for baseline data, and surgery to remove his port

- 6 Months, follow up colonoscopy

- 1 year, annual oncology follow up and scan

- 2 years, annual oncology follow up and scan (They said that it is most common for cancer to return in the first 2 years, if it is going to. It can still come back after that, but the 2 year check should be a big milestone.)

- Between 6 months and 18 months, hopefully feel less sick and more like his usual self

He is super optimistic that Kent will not need any additional treatment for quite a while. A) because chemo should have taken care of it, and B) because Kent has a really slow growing cancer so even if it did spread they probably won't know it for a while. That is good though because since it is slow growing, even if there is more it shouldn't be problematic for a VERY long time. :) 

We wanted to say thanks to everyone for all the prayers, love, and support we have received. You have helped us get through this, and we are forever grateful. 

Treatment 11

Wow!! Only 1 more! We are super excited!!! :)

This treatment is going well so far. As well as it ever does. For some reason the anti-nausea medicine isn't working as well as it normally does, but other than that nothing is really bad so far, which is good!

Still no word from the surgeon on if they are going to leave the surgery at the current date, but we are hoping it doesn't change too much. It is nice to think we are so close to being done. We are just holding our breath to know if there is anymore cancer, or if it spread. That determines the next year or more of our lives so we are anxious to know. We are praying hard to have no more cancer, but I already decided he doesn't get to have any more cancer so I guess we don't need to keep worrying! :)

Glad things this treatment:

- The staff at the center is so amazing. We have become friends with them all. I don't know what we would do without the staff there. They are so happy and positive. It is great because they are all SO different too! They each bring their only unique personality and spirit. It is great. :) Apart from being so kind, they are so good at what they do. They take such good care of Kent and the other patients there.

- The new friends we met today. Kent was extra talkative today and the other patients talking today too. We met 4 new friends today. They are all at different levels in their treatments and are all emotionally at different levels of acceptance, but I am grateful to meet them and to share stories with them.

2 of the individuals we met today told us how their treatments involve certain procedures and medications that will last the rest of their lives. We hope that they might be blessed in their journey and pray it goes well. As sad as we are that they must continue their treatments like that, we are grateful that the end of Kent's is in sight.

We decided that Kennedy is going to come with us for Kent's last treatment. 2 weeks from Thursday we are going to have him come and help his daddy ring the victory bell! You get to ring the bell on your last treatment. We think Kennedy is going to love the bell! :)

Congrats to our sweet friend who is supposed to finish he treatments next week! You made it!!

Here are a few pictures I thought they were appropriate! Chemo is a journey that isn't easy, and I admire those who go through it.

The impossible is almost DONE!!!

Treatment 10

Yay! Treatment 10 is done. We are so grateful it is finished. Kent still never really got better, but they said that is what happens with chemo! We more or less expected this, but we figured it would have happened a long time ago. We hoped with all his other rare side effects, maybe the never getting better aspect would skip him. It didn't, but that is ok. Only 2 treatments left!! The plan right now is to push through and just finish. No more breaks, unless something "scary" happens. I assume that means his white blood cell count gets really low or something.

Have you seen Pollyanna? She plays a game called "The Glad Game". I am trying to make it my new motto! No matter our trials there is always some good, right? So this week in chemo, some of the "glad things" we saw are:

Blessings (Glad things) during treatment 10:
 - Only 2 treatments left!
 - The week off has encouraged us that the abdominal pain Kent has is just another one of those odd side effects. There had been concern about it being the result of surgical complications or that it could be permanent from chemo. It started to ease up during the extra week so the doctor thinks if we give it a few weeks after chemo the pain should be completely gone!!
 - Kent was able to sleep through his chemo treatment! This always seems to help him have a better cycle than when he is awake and feeling it slowly make him feel worse.
 - While  Kent slept I spoke with another patient next to us. We have met him before, but we have never exchanged names. (Why? Who knows!) He is probably in his 50's, but is super nice. I was just reading and he kept leaning over "Excuse me miss, sorry to bother you, but have you heard about..." and he told me about a bunch of sports things. He is so optimistic! The good news though is that he had just found out that day that his test results show he is now in remission. He will finish his treatments, but the cancer is done. I was so happy for him that I started to cry! I am so grateful that he received that news. I am praying we get that news too, along with all of our friends from chemo. I had recently met a young woman whose father has been in remission 3 times and is now it is back and worse than ever. She told me, just before finding our Kent has cancer, that remission is a lie. That cancer always comes back, that it truly never leaves, and anyone who tells you differently is lying. I have been told that several times, but hearing this mans news warmed my heart and gave me great hope for the future! Even if it comes back at a later date he has received the blessing of more time and hopefully less sickness! I hope every patient with cancer gets that ray of hope, of remission. That mans story warmed my heart. He left chemo with a quick squeeze on my shoulder, a good luck, and a skip in his step. I am so grateful for his happiness. :)

Not Quite Treatment 10

We almost had treatment 10 on Tuesday. However, when we met with our doctor he determined that Kent was too sick to have the current treatment at this time. Kent got really sick this last treatment and he stayed sick the entire time. At the doctor's suggestion we decided to wait an extra week before continuing treatments. That puts all the treatments off a week, but we felt that it was the best thing. They said unfortunately the next few are going to be really tough treatments, that without the break Kent probably would be unable to complete all of his treatments. We are grateful that Kent has the extra week to try and feel a little better. We are especially grateful that treatments are almost done! Hurray!! :) We are so grateful for all the love we have felt, all the support we have been given as we worked through all of this. We are also very grateful to know that our Father in Heaven and our Savior Jesus Christ have been with us through it all.

Treatment 9

So, let's start with some clarification. I have heard from MANY loved ones that my last entry sounded kinda.... depressed? That is probably the most concise word I can think of to explain what people have told me. I am very sorry! Truthfully I was going for the opposite! But, anyways... the explanation. Things are looking good. Our surgeon made some comments that pretty much made it sound like Kent had very limited time left. We left unsure and worried, but we have since spoken with our Oncologist and he says things are looking as we originally thought. The hope is still that the chemo is working its magic! We will find out after chemo is done. The Oncologist thinks that what our surgeon was TRYING to say is just that cancer is a serious condition. It has its risks. Even with chemo there are no guarantees. We think he was just trying to make sure we see the whole picture, and not just a rose colored version of it. We are super optimistic though! I told Kent that I have decided he isn't allowed anymore cancer once this is done. So there. :)

Now, treatment 9! It is done! Tuesday he got the initial infusions. He got very sick, very quickly. It has been a harder round than the last few have been, but he is hanging in there. All of the nausea hasn't been as big of a problem until this round. He has to take his medication regularly to keep any food down. Thursday's disconnect was really hard. They injected the Heparin, to make sure his Port access stays clear and usable, and he got REALLY sick. He has spent a lot of time sleeping since Tuesday, but he is starting to feel a little bit better.

Thursday we took Kennedy to meet the staff at the chemo center. Kent had promised one of our nurses that we would bring him to meet everyone. Let's just say he pretty much stole everyone's hearts. :) All the patients had big smiles and kept waving. He loved it! He was waving to everyone and saying "hello" and "hi". It was so cute. :) Anyways, when the nurse did the injection that made Kent so sick Kennedy was outraged! He got really upset and started yelling at the nurse and reaching to pat his daddy's head. I love how protective he is of his daddy. He did calm down and was nice to the nurse again, but it was pretty distressing for a minute there.  On our way out Kent put Kennedy on his shoulders because Kennedy insisted on being with him (he always wants to be with Kent when he realizes daddy is having a hard day. He just pats him and holds him. It is super precious) and everyone was talking about our little ray of sunshine, what a blessing he is to us, what a blessing children are especially during hard times. One woman commented that it was nice to see his smile, "he doesn't realize this is a place with so much pain, he thinks it is so great!" She said it was nice to have the positive attitude there. At age 1 my little boy is already a missionary. :) When we left he waved to everyone. There was a doctor there that we had never seen before, and for whatever reason he caught Kennedy's attention and Kennedy turned and yelled "BYE" as loud as he could. Everyone was laughing. Especially Kent. I think it would be good for Kent, and maybe the other patients too, if Kennedy came every time. However, with all the immunosuppressed issues we don't normally bring him so we can hopefully not get anyone sick. They all loved him though and Kent said it definitely made the disconnect easier. :)

Surgeon

Tuesday we went and saw the surgeon. The appointment went well. Kent wasn't feeling well that day, but we made it! The doctor said he could tell the chemo was taking its toll, but that it is necessary to "reduce the risk factors" of Kent dying. It was an... interesting conversation. He sounded like he thought things were more serious then we currently believe, but he didn't elaborate. We have decided though that we are going to stick to believing that all is going as smoothly as we want it to be going. :)

Anyways... He said that the surgical site seems to be healing well. We talked a little about the upcoming surgery... for whatever reason, that we do not know, they are moving the surgery to an earlier date. It was originally going to happen at the end of October, now it is supposed to happen sometime in September. Probably the middle to the end of the month. We aren't sure why the change, but are hoping it is just because he healed so well. I guess we'll see!

This changes a lot of stuff though. We are figuring out moving and classes and, well, life! We had Kent taking first block classes to maintain his enrollment at BYU, but now we need to find some different classes that he can take second block instead. Hopefully he has recovered enough to handle the classes then. I am sure he will do well. My sweetheart is tough.

The appointment was great because it gave us a clearer perspective on how close we are to "the end" of chemotherapy. We have already come so far, and yet it still feels like it isn't going to end. But we are almost there! Really! We are!! The Lord has guided us this far and we know He will continue to guide us. We are just taking each day as it comes and are so grateful for the blessings in each and every single day.

Round 8

Can you believe we have made it this far? I know when it all started, this point seemed really far away. But we are 2/3rds of the way done!!

Kent has pretty much gotten used to how things feel now. The Heparin (?) injection still makes him gag a lot, he almost threw up this time, but other then that he seems to be having an ok cycle. We even made it out for a walk as a family today. Kennedy was so happy. He just wanted to ride on Daddy's shoulders and walk holding Daddy's hands. :) Kent was pretty exhausted by the end, but his spirits were lifted.

It really made me smile this round, both Tuesday and Thursday, seeing Kent encouraging the other patients. Today especially. There was another young man doing chemo who looked pretty down. Kent simply said "Good luck" and to an older woman "Hang in there" and they both looked surprised, but smiled. The few simple words were enough to maybe get them through the treatment, to know that someone cared. We have had several individuals who have provided us with those words of comfort and they are still with us. I think we might always remember them.

I am so grateful that Kent is thinking about others, and not just himself which could be so easy to do. I love my sweet husband and admire him for what he is going through. I know it isn't easy, but I am grateful he is fighting so hard. Happy Father's Day to my wonderful sweetheart!

Round 7

So far things have been up and down. Good, then bad. Truthfully it has been hard, but for different reasons. Nothing is really new this time, things just keep going the same. He never really got feeling better, so he didn't feel like he got as sick at first. He had a miserable first few days, which was how his last few days of week 6 went, and one of them we spent on an airplane! On our Barker side our sister Heather got married to Zach. It was a beautiful wedding. Kent and I both felt like we really needed to go, so we braved it and it was beautiful. Kent got really sick. It pretty much took everything out of him, but he really enjoyed it and we are so glad we went. He is going to need a few more days to recover from it but should be ready just in time for a new round of chemo. It was so fun being a part of the wedding, reminiscing about our wedding, and just being reminded again what an incredible blessing it is to be married in the temple. To have each other forever, no end ever. I will be with Kent and Kennedy always. How incredible is that? SO incredible.

At the airport: He had to wear a mask at the airport and on the airplane, and he had to ride in a wheelchair. He didn't want to, but he was really weak. At the Raleigh Temple, an LDS Temple where Heather and Zach got married, he also spent the time in a wheelchair. It was such a blessing that we had that. The whole wedding was incredible. There were so many wonderful people there too who helped Kent out. I am so grateful for their support of Kent, all while running around helping out at the reception.

On the trip we found 3 things that tasted good to him.
     - Homemade Strawberry Jam
     - Burritos/Chimichangas
     - Cheddar and Sour Cream Ruffles
The chemo has really affected his taste. Basically, he doesn't taste much. So finding some stuff that tasted good was so great!

Funny moment of this treatment: During our extra fluids day when we got the chemo pack off a sumo wrestler showed up. Well, it was a girl in an inflatable sumo suit. Her mom was there and said she would love it if her daughter came and made her laugh. So her daughter showed up in a blow up costume and had everyone laughing. It was really fun, although almost all of her jokes were really dirty, but I appreciated the sentiment that she wanted to come help her mom, and all the patients smile.

Round 6: HALFWAY!!

We are officially halfway! Or, we will be as of Thursday afternoon. It is really so wonderful to have finally reached this point. 6 down, 6 to go. Kent has unfortunately felt pretty miserable so far, but he is hanging in there. He is getting a lot of sleep, which will be good for him.

Big news for this cycle:

    10% chemo reduction. They think that the side effects that he has been experiencing, and some that were more severe this last time, are a little too much to maintain the current dosage. This round there will be 10% less poison! Next round may go right back to normal if the side effects don't change, or it could possibly go down. Don't worry though, the doctor is confidant that the 10% change will NOT mean a higher chance of the cancer sticking around. It should still be just as effective at this stage of things.

I told you all a little about J last week. We saw her again today and thought I would share a little more about her. Today it was really sad to see the devastation on her face. She got some bad news in a recent CT scan. She has stage 4 colon cancer which metastasized to her liver. They hoped the chemo for the colon cancer would help the liver cancer, but the tumors are not shrinking. The blessing, they aren't growing either. Because of these new developments, her husband came with her to her treatment today to get all the information and the new treatment plan. At the beginning of the appointment I am not with Kent, they only take the patients back. While I waited I got to know her husband a bit. It was really sad to hear his concern and worry, and I could relate in many ways. This blog isn't about me, so please forgive this quick switch to my side of treatments.

I spoke with J's husband about the treatments and how he was doing. Frankly, he said, he was not doing well.  He has been told the same things I have been told. "This isn't about you, so stop being selfish" "It isn't like you are the one with the cancer" "You aren't the one going through this, your spouse is" etc. He told me today that he wishes people could understand that as family we are going through treatments too. We don't feel the sickness, but we feel helpless as we can't change it, as we watch them go through pain, sickness, testing, etc. It really isn't easy being the "caregiver" because most of the care we can give is simply sitting there and watching it all take place. There is no cure for the cure. We also talked about the many "good intentions" comments we have had directed at us. For instance "Happy Mothers' Day. I hope you aren't a widow next year and that your son doesn't grow up without a father."

...

What do you say to that? Or as J's husband shared with me today... "My sister's best friends wife had that same cancer. She was dead 3 months later."

...

Again, what do you say?

I don't bring this up to make anyone double think what they have said to me.  I am so grateful for the love and support you have all shown us. It was just... refreshing to hear from someone else who is experiencing similar things, hear that they have learned to accept the good intentions from others, even if they kind of hurt sometimes. I for one am terrible with words. I never say what I really want to say, or feel like I should say. Somehow it always gets mixed up, so I am sure I have probably been one of those "good intentions" comments at some point, and I hope whoever it was understood what I meant instead of what I said. But like I said, it was interesting to hear these stories from J's husband too.

He also shared with me about how he felt cheated by life. He said he has spent his whole life building up for the retirement they would share, which he will now most likely spend alone. All of his plans, their plans, are just gone. They live day to day now. My heart went out to him. In many ways I could understand. Kent does not have stage 4 cancer, for which I am SO very grateful. Having such different circumstances means I can't totally understand, but to an extent I can. Kent does still have cancer, and at least 3 times while in the hospital in January I was told my husband's prognosis was very bad, that I might lose him. We had just celebrated our 3 year anniversary when this all happened and there they were telling me that it was all about to end. To that extent, I also felt cheated. How did the 60+ years I had planned on, all the children and grandchildren, family vacations, our first home, all of it! how did that suddenly turn into he has years, maybe months to live? How could I cram 60+ years into such a short amount of time, especially with a very sick husband? Thankfully, his prognosis is much better now that all the emergencies from the beginning have been cleared up and we have all, or at least most of, the information, but there are days where "about 80%" still seems like a really low number, like getting the C or D on the paper instead of the A. At these times I am so grateful for the promise I have of forever with my sweetheart. Even if it ended right now (which it better not) I would be grateful for every second I have had with him, and I would anxiously look forward to the eternity I have ahead. There have been many experiences that have taught me the importance of forever families, and this one was definitely a BIG lesson. After talking with him, I really hope J and her family have that same blessing, that same promise that it doesn't end here. That if the Lord takes her home, that she will just be on the other side waiting for them.

Anyways, enough about me and this thought provoking conversation. Kent is halfway! I am so grateful for the strength the Lord has given us in helping us get through this. Everyday we feel His guiding hand, leading us, supporting us, and strengthening us. It is amazing how far we have come since January, and I know it was only done with the help of our Lord and our Redeemer. They are always there as a support, and they have provided us with wonderful family and friends who have also been with us every step. We love all of you and are so thankful for you!

*** Kennedy had a check up and the doctors think things look good for him. They aren't sure what to say because they were positive they were seizures, now they aren't sure if they really were or not. However, they think even if they are seizures that he will just grow up happy and healthy, that the seizures won't interfere. His development is great and they are SUPER optimistic for him! :) YAY!! :)

My forever family.

Round 5

So far things are actually going quite well so far. We are feeling so blessed that our Heavenly Father is strengthening us. It has been a wonderful blessing for all of us: 1) Kent not having to feel so bad and 2) so Kennedy and I don't have to see him so miserable. It is really so hard to see the person I love more than anything in so much pain. I wish I could take it away, that it could be me in his place, but since things are this way I am so grateful for the tender mercies of the Lord in helping us get through this.

This last Tuesday as we were waiting for chemo to start, we had a rather humbling, and in some ways frightening, conversation with "J". (For her privacy I won't disclose her name, although I don't think any of you will know here!)We see J every chemo trip. She is on the same chemo regime as Kent, for colon cancer. When we have spoken before we have shared ideas on how to overcome side effects, or even just empathizing together over feeling sick and miserable together. However, this time we talked more about the actual circumstances of what brought them here. We talked about how Kent is a stage 2, maybe 3, but because of complications they couldn't sit around and wait to officially determine. We had collectively decided to move ahead with chemotherapy instead of waiting to find out. As J shared her story, my heart broke for her. 10 years ago she had breast cancer. Fortunately it wasn't advanced enough to require chemo. She had surgery and was done. She said she had come in every year to be checked and had been clean. Her last check up was supposed to be her 10 year appointment and, at some point in that check up, she found out she had stage 4 colon cancer. My heart broke at this point. It is hard enough seeing all of these people so sick, but to hear her whole story was so sad. She said, even after all of that, she wishes she could take Kent's cancer from him. She said she would rather go through cancer a 3rd time then for Kent, as young as he is, to ever have to have experienced it. She has a daughter the same age as Kent and she said it makes her think of her kids when she sees Kent. She said just the night before she had spoken with her daughter and told her how heartbreaking it is to see "the sweet boy in the black sweatshirt and his cute little wife every week". Anyways, she said it was really sad that her last appointment ended up being the start of many more to come. My heart broke for her, and I am praying for her to recover quickly. The conversation also made me even more aware of where we stand. They have warned us and told us that it can come back, but I guess it was easier to think that he just won't get it again. It was a bit of a reality check for me that it is a very real possibility that it can come back, but I pray it won't. I am grateful for the knowledge though that Heavenly Father has a plan, and His plan is perfect, so if it comes back I am so grateful for the knowledge that the Lord will again help us work through it and we will be stronger in the end.

Back to Round 5: they are concerned about 2 things:
    1. He has had some temporary loss of muscle function. They are doing some tests to find out what it is so they can fix that.
     2. He has been having some severe abdominal pain around his surgical site. They are pretty concerned about this, especially because there is the possibility that he didn't heal properly which would be bad. He is scheduled for a CT scan next week to check, and we hope they can find the answer.

Other then that things are going fairly smoothly, for which we are EXTREMELY appreciative. The blessings keep pouring in. We are especially grateful for the wonderful doctors and nurses who are helping us through this. I am grateful they had the patience and ability to go through all that schooling so that they could know how to help my husband, along with countless other people, overcome this kind of trial.

*A quick update on Kennedy because we have been asked for one! :) He is doing really well. The "seizures" or whatever they are have slowed down quite a bit. For the most part he is having one a day, or less, which is really good. We are waiting to talk to our neurologist for further information on what the EEG showed, but we are pretty optimistic for him! It is another example of the many blessings we have received during this hard time.

I read this quote and just LOVED it! It clearly states a lot of what we have experienced so far this year.

Round 5 Starts Tomorrow

Round 5 starts tomorrow. We are both pretty nervous. Round 4 turned out the be the lowest, and the highest, point in chemo so far. Kent had not had so much pain and sickness before. It broke my heart. We almost ended up in the ER. Then in answer to our prayers he started doing much better. He had 3 really good days this time, which was a nice break before feeling sick again. We are so grateful for the tender mercies the Lord is showing us right now. We are grateful for this opportunity to learn to rely more on the grace of the Lord than on our own abilities. It is turning into a great blessing for us, although it isn't the easiest.

Our little ray of sunshine, Kennedy, has been especially tender with Kent this last week. I think he knows something is going on, and he is taking good care of his daddy. Every morning he likes to crawl over to Kent and pat his cheek, just checking that he is ok. He gives a kiss then is off to play. :) We know that the Lord blessed us with our little angel to help us get through this crazy time. He really is our sunshine.

Round 4

So we officially finished the fourth dose on Thursday afternoon. This one is a doozy. Poor Kent is really sick, but he is a fighter! I am so grateful he is willing to go through this for me and for our little Kennedy. I love him so much.

New symptoms: none.

Fortunately nothing is new this time, but everything is just a little worse than before. Even when it is nice and warm inside he is so cold that it is like glass all over him. We try to keep him warm, so he is super bundled up.

For now we keep going! We'll see what happens next! We are just so grateful for the blessings we have in our lives. We are being so blessed right now.

Pictures

Here are some pictures!!

After surgery many, many weeks ago. (When I can get more pictures up you will see how much weight my sweetheart has lost.)

Photos of my cutie pie. No, it isn't a head injury. Kennedy spent 5 days in Primary Children's (part of why I haven't gotten this updated sooner) having an EEG run because the doctors think he is having seizures. The test pretty much came back inconclusive, but he sure looked cute! He hated wearing the turban. It wasn't the most comfortable thing in the world. He successfully ripped it off several times, which meant they had to put it on several times, which he hated. But never fear, he is as happy, active, and adorable as ever. :)

Round 3

I have been a super slacker. Sorry about that. Our life has been CRAZY lately. But we are back!

Tomorrow is round 4. Hurray! We are slowly making progress.

Round 3:
    - Kent got intense chest pain and got sent to the hospital for chest x-rays. Everything came back normal, which led the doctor to the conclusion that Kent is one of the lucky random VERY few people to ever get this side effect.
     - Kent had some rough stuff with the symptoms and ended up on a lot of medication for a couple of days, but is feeling much better.
     - Extra IV's because he is getting so sick. They have decided it is going to be standard protocol for Kent.
     - Regularly taking B6 vitamins for neuropathy (lots of numbness, poor guy).
     - We had a LOT of fun on chemo day. We played this game that a member of our BYU ward gave us and had a blast. We were laughing a lot and had a lot of people staring and laughing too. It was lots of fun. The nurses said they didn't mind if we wanted to stay longer because we were worth a good laugh. Haha. :)

Here's hoping tomorrow goes well!

We have seen this in our lives, especially recently. It is such a blessing to have the "heavenly help" Elder Bednar speaks of. What a blessing this Gospel is in our lives.

Answers to Prayers

We want to say thank you for all the prayers, fasts, and happy thoughts sent our way. We really are so grateful.

This post isn't meant to be preachy. We just felt that we needed to share this because there are so many who have done so much for us, and three are those who have expressed sadness over this.

We wanted to let everyone know that we are feeling those prayers. I have had so many people express their love, and yet sorrow that we aren't seeing the impact of those prayers. Kent is still sick, and struggling with chemo, so why aren't the prayers being answered? They are. We know they are and want you to know they are too. We can feel the Lord's comforting love and have seen blessings come in so many ways, many which are unexpected but appreciated. Although we aren't seeing a miraculous healing, we really are seeing so many other blessings. You have all touched our lives, even if it is hard to see what you have done. This is something that Kent, our whole family, gets to experience. That includes all the ups and downs, but we know that the Lord is always there to love and support us.

Thanks for all the love and support. We love you all. We really like this quote. We know He is near and aware of us. We really love the last part, "Every one of us is more beloved to the Lord than we can possibly understand or imagine." We know that is true and we feel that love every day.

A New Symptom

A new symptom has arisen, unfortunately. Mouth sores. They hurt a lot unfortunately, but our wonderful doctors have gotten Kent a special mouthwash that will (hopefully) make it all better. With the symptoms coming so quickly, severely, and lasting so long, the doctors have said we may need to lower his chemo dose because Kent is apparently very sensitive to the chemo. We shall see!

Round 2

Round 2 started on Tuesday and... well it has been a beast. Poor Kent didn't even make it 10 minutes into chemo before he started to get sick. By the time we left the nurses were all staring at him. They told me to carry him out. He said he was fine, but he was white as a ghost and shaky. Every day seems a little harder, unfortunately, but he is a trooper.

New symptoms this time:
- Numbness and tingling in his hands and feet
- Feeling really cold
- Muscle twitches

They gave us more medications to help keep him healthy, which we are grateful for. He is just getting lots of rest though, which helps. The cold sensitivity really set in fast this time and everything he eats/drinks has to be steaming. When this is all over we are going for a great big milkshake! :)

My cousin shared this quote and I loved it! This is how we are trying to live, and we hope we are.

Side Effects

Side effects have really started now. Poor Kent is pretty sick. To list a few of the effects he is feeling:

- Nausea (and lots of it)
- Super cold sensitivity
- Headaches
- Loss of appetite
- Loss of taste
- Fatigue
- Body Aches
- An overall "icky" feeling

That is just some of what is going on, but he is tough and is dealing with them well. We are so grateful to live in this day and time where we can be blessed by the medical advancements that can help get rid of the cancer, and overcome the side effects.

Tuesday is supposed to be his low point for this round of chemo, so we will see how it goes. Everyday has been a little harder, and we are told that every round will just get harder, but we are grateful that the Lord is giving us strength, especially to Kent. It is a blessing to know we have a Father in Heaven who loves us, and that we are so important to Him.

Day 1: And So It Begins

We started today! So far he is doing pretty well. He had an IV drip for between 2 and 3 hours. They started with anti-nausea medicine for 30 minutes, then about 2 hours of the actual chemo. He started feeling it pretty quickly, with a burning sensation radiating out from his chest. It developed into chest pain and difficulty breathing. They started to become concerned, but Kent's vitals were great so they said not to worry. We played Sudoku, read, talked, visited with fellow cancer patients and families, and had quite a bit of fun during those few hours. They hooked up his pump (he brings a chemo bag home in a portable pump that he wears in a fanny pack. He will have it for 46 hours and then we return to get unhooked.) and then sent us on our way. Kent did find out 2 hours after we finished that he had another side effect: disliking the cold. When he touches cold things it feels sharp, but when he eats cold it feels like being stabbed by a knife. Poor guy! Guess our date to Jamba Juice (which was supposed to happen to celebrate finishing his first dose of chemo) is going to be postponed for a few months.

Everyone there is so kind, and we really appreciated it. Kent is by far their youngest patient, so a lot of the nurses there said it was quite refreshing having a youngster to talk to. :) I will say that I didn't like the nurses teasing and flirting with Kent too much, but we ended up with a guy nurse in the end who was very professional. :)

Things are going pretty well so far.  Even though it isn't an easy experience, we are feeling very grateful for the opportunity to grow closer to each other and to the Lord. He is giving us these experiences to help us in our progression, and we are grateful for that knowledge. We are continuing to feel the Lord's love and blessings in our lives,and the love and support of so many loved ones. We are so grateful everyday.

Some of the most heart-wrenching, discouraging events in our lives - from which we long to be set free - are actually designed to prepare us with the very skills and understanding [God] needs us to have.  As we draw closer to the Lord and put our total trust in Him, in His power, and in His timing, we can leave our fires of affliction more pure, more refined, and with more skills and understanding."   - Wendy W. Nelson

Thankful

We wanted to add a thank you on here. We are so truly grateful for the love and support we have received from so many wonderful people. The amount of prayers, fasts, and happy thoughts sent our way have been such a blessing for us. We are so thankful. There are so many others who have done other wonderful things for us, and we wish we could express our gratitude, but words cannot describe it. The love we have felt is incredible. I wish I could send a thank you note to everyone, but for now please accept this as our thank you, especially to all those whose names we don't even know.

We are also so grateful for the GiveForward account that our sweet cousin Jessica set up for us. So many people shared it on facebook, with friends, and the support we have received there is truly overwhelming! So much of that has been anonymous, but we are so grateful to all of you who gave or who shared it. We are so grateful that you thought of us.

We are so grateful to feel the Lord's love for us and know that He is blessing us too.

Thanks from the Barkers!

The Port

So Friday morning we went in to get the port. Well, I went but Kent got the port. Anyways, the staff there was really great. They were really positive and kind. The procedure was done with a mild form of anesthetic, so Kent was awake and aware the entire time, but completely relaxed. The port is located just beneath his right collarbone. There is a lump there where the port is, and there is a small "spaghetti noodle" that goes up his neck, then back down to his heart. You can only see it in his neck though. The surgery was about 45 minutes long and he did great! The port is going to be a real blessing for Kent as it will help keep his veins from being damaged during chemo. (No worries, his heart won't be damaged because of the massive amount of blood pumping through it. I worried about that too. The veins are just so small and fragile that they can become damaged.) We are so grateful that the doctors know how to best take care of him so he doesn't have extra troubles. Overall he is doing well. He is hurting from the procedure but is handling it like a champ.

Now we just wait for Tuesday!

Chemo Class

So, chemo class... I can think of 2 words that describe it very clearly: informative and terrifying.

We were part of a class of 6 individuals who are going to be having chemo. We watched an interesting, though slightly boring, video about chemotherapy and cancer. It answered those "frequently asked questions". Then the nurse who was teaching handed out packets, each was personalized with information on what treatments they would be receiving.

Now for the terrifying part. She proceeded to explain the most common side effects... wow. There are so many side effects, I won't even bother listing them. Let's just say there were more than a dozen. Anyways, I think it shook us both up a bit. Whenever we would start to calm down, she would add an "Oh, but Kent you will probably have _____ as well because you get this extra medication." He kept getting the additional things! Poor guy. Everyone else in the class was probably age 60 or higher and they just kept looking at us and shaking their heads with a really sad look on their face. It was a little awkward with everyone staring, but with Kent being his wonderful self he had the whole class laughing over the truly frightening thoughts of their circumstances. Everyone was smiling by the time we left, and there was a lot of laughter for a room of cancer patients being told how sick they are about to get. I am one lucky gal to have gotten such a sweet guy!

A Plan

We finally have a plan! Well, at least sort of. :)

We are going ahead with chemotherapy first. So the current schedule looks like:

- This afternoon we are going to "Chemo Class" which you have to take before starting chemo. It will be interesting to see what it is like.

- Friday Kent gets his chemo port put in. It is a line that will make it easier to administer chemo and get it where they want it.

- Tuesday we meet with the oncologist and MAYBE start the chemo that afternoon.


That is currently all we know, but hopefully we find more out soon. Fingers crossed that Tuesday starts the chemo!!

A Blessing

We are feeling so blessed right now. Kent got the results from his colonoscopy, and it looks great!! As I said before, there were 2 polyps, but we now know they were not cancerous! We are so thrilled. The Endocrinologist said that Kent needs to come back in a year because he has cancer and because of the polyps, but for now it doesn't appear to have spread through his colon! YAY!!

We are still waiting to hear about when surgery and chemo are going to be, but for now we just feel so grateful that the Lord has blessed Kent with no additional tumors in his colon.

I Forgot...

In the last post, I forgot to mention the second surgery.

Kent was prepping for a colonoscopy and started having a lot of really severe pain. We hurried to the E.R. and found that his colon was closed off. The infection from his ruptured appendix had spread and created a large abscess on his colon. This wasn't any old infection either. It was this crazy infection that is REALLY bad if it isn't caught quickly. The statistics we were originally told were like... 90% fatality rate. Not what we wanted to hear. We later found out these were WWI stats. Everyone has this bacteria in their stomach, but after abdominal surgery it can spread.

Anyways... they couldn't see anything on the C.T. scan, so they went in for exploratory surgery. They found all the infection, cleaned up a bit, removed the abscess and a portion of his colon, then started him on IV antibiotics. He was in the hospital for almost a week on antibiotics and with a drain to get rid of all the infection that time. They didn't want to take any chances.

Now he is feeling pretty good! Still recovering from 2 abdominal surgeries, but overall really good!

Let's Start at the Very Beginning

This blog is going to be to update on Kent's health. We have had many family members ask if there was somewhere they could go to get the latest updates, and now there is! :)

Disclaimer: I will TRY to get the new information up as soon as possible. Please be patient with me.



So, let's start at the very beginning. On January 9th, Kent came home from work and told me he was having a lot of pain in his abdomen. He said he was sure it would pass, but I wasn't so sure. I told him we should get him into a doctor. He said no. :)

The next day we were in Salt Lake City, heading to one of my friends wedding receptions. All day Kent had said the pain was getting worse, but that he still didn't think it was a big deal. Just before walking out the door to the reception I convinced him to go to the ER. I was worried about his appendix, and he said he finally thought I might be right. So my mom and brother took Kennedy to the reception to show him off to all my friends and Kent and I headed to the ER.

We were there for a while and they started running tests. They finally took him back for a C.T. scan and when they came back with the results they told him he was so lucky to have emergency surgery that night!They quickly took us up to the O.R. and gave him a rundown of the procedure. They would be performing a laparoscopic appendectomy. Instead of 1 big scar, he would get 3 little ones. They were hurrying to get his surgery prep done, when "CODE BLUE!" and everyone disappeared. So our emergency surgery got pushed a couple hours back for an even bigger emergency.

They finally took him back to surgery, which left me waiting in the hall. I was super nervous, but my mom came and sat with me, which I appreciated. When the doctor finally came out, he said everything had gone smoothly. Kent handled the anesthesia well, and the appendix came out without much difficulty. He said it had ruptured, so we needed antibiotics to clear out any lingering infection, but other than that he would be fine!

Kent was super adorable coming out of anesthesia. I guess he kept asking for me, but he was so sleepy he was saying it in a deep voice, and like he had been slowed down. "Lllllynnnndseeeey Bbbbarrrrkerrrr" (Not sure how to really explain it, but the nurses were all in the giggles over how my husband was SO adorable and how they wanted to take him home. haha. He is a cutie. :D)

The next day, the doctor said the same thing. Things went well, Kent looks good! We'll get him on his way and check his incisions in a few days and he will be good as new. We were thrilled. I had a lingering feeling that something else was going on, but the doctor said we were good so I figured, quit worrying!

3 days later we walk in to the surgeon's office to get the checkup done. We were puzzled by the surgeon's sign. It said he was an oncology surgeon. We turned to each other and said how grateful we were that we weren't there for cancer.

When we were back in the room, the nurse looked at us, shook her head, and just said "How are you feeling?" We were so lost. She just looked so sad! Kent said he felt great and she stared at us like we were crazy. When the doctor came in and saw our smiles (and maybe the nurse said something as well) he said "You guys really need to take this seriously. It is a serious thing!" We were VERY confused by this point. What was so serious about going in for a checkup on an appendix that was NO LONGER THERE? "You have to accept that you have cancer."

....


....


....

"WHAT?!" Out of the blue this comes down. We were not expecting that at all. He proceeds to explain that because the appendix ruptured they weren't able to see the tumor on the C.T. scan. They had no idea it was in there, and there were some reasons for concern. Normally they would have done 1 large incision to remove a tumor. By removing it laparascopically the tumor had been damaged and there is the chance that the cancer cells were "shaved off" into the blood stream, which could mean it is spreading. There is also the fact that... we really have no idea how long the tumor has been there. That means it could have been spreading for quite a while.

We got set up with an oncologist, who explained the options we had based on what information they had. They said his tumor was a T3-T4 (assumed to be T4) and that they are assuming the cancer is stage III based off of what little info they had. Because the tumor was damaged, the appendix ruptured, and a few other problems they were not able to state 100% that it was stage III, but they are pretty sure. They also gave us a bunch of statistics, which I for one did not like hearing. There was also the disclaimer (from multiple doctors) that this is kind of uncharted territory. His age, the type of cancer, and several other factors make this a rare case. There isn't research because it is rare, so they are just having to make educated guesses at this point. Things could have a much more positive, or negative, outlook then we currently know.

We are currently waiting for test results from his colonoscopy to determine whether his next surgery (There will be at least 1 more surgery in which they remove at least a third of his colon and all the lymph nodes and some tissue in the area that was directly around the appendix) will happen in the next few weeks, or if chemo therapy starts in the next few weeks. He will have at least 6 months of chemo therapy, and then they will test and determine what needs to be done additionally.

(The colonoscopy came back with "nothing too scary." Whatever that means. We know for fact he had 2 largish polyps removed, which we have to wait on pathology now. The doctor also said "They may just want to remove more of the colon." So we aren't sure what that meant. That  combined with his "nothing too scary" comment have left us unsure, but we will hopefully have more information later this week.)

So now we sit and wait.

I think that is everything... :)