Tests

On Facebook I keep reading status updates about tests and finals for college students. While all you were taking your tests, John was taking different kinds of tests.

John has been having a very hard time sleeping at night, which causes him to be exhausted during the day. He wakes up several time throughout the night. One morning while I lay there awake I heard John stop breathing a few times during his sleep. So that worried us!

Also John has been saying that his heart hurts, and that it feels weird or different. He says it is hard for him to explain.

He also tells me a lot that his lungs feel like they are burning, we don't know what that means.

It was sad the other day when John woke up to read his morning news it said "If you have any type of lung disease do not go outside at all" because of the inversion down here in Utah. He has to go outside, so I went and bought him a scarf that has seems to be helping the coughing when he comes in from the car.

So at his latest Doctor appointment, we talked about all these things. He wanted him to get a ultrasound of his heart, and a test to take home at night to check his oxygen levels. The test at home they said his oxygen was supposed to be over 90 and we saw it drop a few times under that. So I pray that everything turns out okay.

We will be getting results next week for these tests. They said if his sleep test at home is bad then he will have to go to the hospital for a more detailed test. Also John's next scan wont be until January 12th. Dr. G says that CT Scans can cause cancer later, so he doesn't want John getting too many. So every 4 months from now on.

I wish that the kinds of tests John was taking were finals for college. But I can only wish. We are trying to stay positive and not stress out until we need to.

New news and new Images...

For those of you who are wondering, this is John's largest tumor. It's not very big, but it is near the airway from the esophagus. It hasn't grown at all since we found out about it. All the other little gray dots are tumors as well, but aren't quite the size of his big one. It's so weird all those tumors are inside John.

John has been missing a lot of work these past couple of weeks due to headaches and being extremely tired. He has been keeping in tough with his oncologist and he want to get a MRI of John head this next week. I'm not sure of his reasons yet, but we will see the Doctor when John gets his treatment next week.

I guess you could say I am a lot nervous and just trying to take it day by day. Please keep John in your prayers and hope for the best for him. Thank you!!

Every three weeks

Lately it seems like everything is sorta getting back to normal. We moved into a little house still in Kaysville down the street from our old apartment. We are just renting and loving the yard. John is still working and doing pretty good.He started to get these headaches, we think because of sinuses. That's the only concern we have had. He is now on a antibiotic for it and we think that they are helping, because he hasn't had a headache since. John wants to get surgery on his eye again so it will stop watering. So we are working with the insurance on that right now to see if they will cover it.

We are just going through our days and things are normal but every three weeks we are reminded that John needs another treatment for this lung cancer he has. I am so thankful that John is doing as well as he is and that he at least has an option to do something. It's better than nothing. (John hates this picture, but I LOVE it!!)

Flying on a B-17 & Results

(The B-17)

My Mom's husband Mike gave John another opportunity of a lifetime!! He set John up to fly on this awesome B-17. They are rare now days, so it's truly amazing to be able to see one, let alone fly on one. The EAA (Experimental Aircraft Association) had a B-17 tour stop here in Ogden Utah, this year. So on the 5th of June he was able to take a 30 minute flight on it. He said it was amazing!! I wasn't able to go & we didn't end up getting a picture of John and the plane, but he has some on his phone I will post later. Two of his sisters Clarissa & Missi bought him a shirt with the logo on the B-17 in the picture. Thanks ladies! Thank you to Mike for setting this up for John!!! You have done so much already for John, and it means a lot to me!

We FINALLY got some results from John's CT scan he had last week. He had a treatment and met with the Doctor yesterday. He informed John that the tumors have not grown and are the same. It has been 3 months since his last scan, so this is excellent new to us! We are happy with it!

I want to thank everyone for all your support these last couple months!!!!!!!

BTW....

By the way, John is doing excellent!!! He started training new people at work. He is still doing his diet and is feeling great!!! He gets tired easily but other than this everything has almost been back to normal, as normal as it can be!

Spending lot of family time together lately, here are a couple pics!!!

(At Gailey Park)

(Easter Egg Hunt in Clearfield)


(Easter Egg Dive in Layton)

Treatment Day!

Today was the big day! John received his first treatment. But first I wanted to tell everyone some good news! He got his results from his CT Scan back today and Doc said that his big tumor has not grown. The tumors are the same and the Avastin should keep them like that.

It wasn't really very hard for him, he just had to take Tylenol and Benadryl. Then he had to sit in a recliner chair for about 2 hours. The nurse gave him his IV and we just waited. She said there shouldn't really be any side effects. As of now John is feeling tired and he said he feels like he is having anxiety, but he's not. If he's up playing video games I think he is OKAY!! :)

The Doc said he gets his next treatment in 3 weeks and it will be shorter because at first they have to give it to him slow in case he has a reaction. He will get another CT Scan in 6 weeks. So for now we can try our best to go on with our normal lives and hopefully the medicine is working it's wonders on John!!

Finally!

(John's nephew Shawn)

We moved up John's CT Scan to tomorrow because they are going to start with the Avastin on Thursday. I wanted to see his scans before they started any drugs on him to see if his cancer is growing at all without it first. So FINALLY, Thursday is the day. I asked John if he was nervous, and he said no he just wants to get everything started. Well I am glad he is holding it together, because I am freaking out to say the least. This has been one crazy year so far. I hope John's Doctor can change that for us starting Thursday! So please wish him luck and pray your hearts out that all goes well!!!

GOOD news and BAD news bears!

I haven't posted forever because I wanted to make sure that I had all the details of what was going on. It's good and bad news.

A couple of weeks ago the lady from the Doctor's office called and said that the drug company is going to give John the medicine!!! That all I knew for about two weeks. We didn't know any other details until this week. It was driving me crazy!! So we sent off our income to Genentech, and so for John to get the medicine shouldn't be too much longer.

They said that they will be giving John Avastin for a year!!! Which is great to hear! Unfortunately they will not cover the infusion. I am not for sure how much this is going to run us, but it doesn't really matter because he will be doing it anyways. As for right now we are still continuing with the fund raising, which is going pretty good! How truly amazing and humbling that experience has been!!! We are so blessed!!!

Holy cow things have been crazy busy and we are trying to keep up with our lives, and keep them as normal as possible, but it seems like it's just stressful the worry about John's health. It makes everything a lot more difficult to deal with. My Grandpa Bowen always used to tell me "If you've got your health, you've got everything." At first I was like thinking "Okay, Grandpa" but now I know exactly what he means. The elderly know everything!!! :) I hope to learn a lot more from my grandparents. (My Grandpa Bowen, Isn't he cute??) :)

I pray that this Avastin will help John keep his health for a long, long time!!!

His little turkey's need him!!

One more shot!

Yesterday we did find out that the insurance wont cover the Avastin that I told you all about. They said it's because FDA hasn't approved it for John's cancer and they don't want to be responsible if the medicine were to hurt John more than help him. LAME!! I tell ya!
Anyways, finally the lady from the doctor's office called me and she said we have one more thing we can try.

There is a reimbursement link on the Avastin website that Dr. Gray told us about. He told us that if we apply for it they may pay for everything or give it to John for cheap. So this is what we are hoping for. Genentech is the name of the company and they require that you try your insurance first. So yesterday after we found out, John went and signed the paperwork for Genentech. They will be calling us soon to verify our income and we will see from there.This will be the last shot to get this medication, without help the proceedure and drug would cost $10,000.00 dollars every two to three weeks. So it's not cheap. It's unforunate that we have the drug in the United States and it is this hard to get it for a 25 year old who needs it! We are hoping still and I will let you know as soon as we find out!

Thank you everyone for your support and love and prayers!! We love you all!!!

Feels like forever!!!!

It seems like it's been years since we found out about John's cancer coming back. It's only been a couple of months. We are pretty stressed some days and others feel like they are kinda normal. I am kinda sick of having to rely on others, like the lady at the doctors office that told me that she would send in the authorization for the Avastin on Wednesday. I have been calling the insurance everyday since then to see if they received it. Because the lady at the doctors office wont call me back.

FINALLY today the insurance informed me that they received it and that we should know within a couple of days! You bet ya I'm going to call them everyday till we find out. :) I can't stand waiting for things in case you don't know me very well. I am very persistent and I am glad I am cause you have to be when your husband has cancer and your daughter has special needs. When we find out I will be updating on here asap!

Avastin

Avastin is the name of the drug that the doctor wants John to take. Avastin is the tumor blocking medication that I mentioned earlier. It targets the tumors and the blood flow from them so the tumors cannot grow. It has really no side effects! Dr. Gray wants him to take these because he believes that they may lengthen John's life by 20 years. If this medicine works John will have to stay on it for the rest of his life.

Avastin has been approved by the FDA for seven different types of cancers. Unfortunatly it has not been approved for ACC by the FDA, because it has not been tested on ACC. It is so rare that they don't have enough patients to really do clinical trials on. We have been told by Dr. Gray's patient advocate that Avastin will probably not be covered by insurance. They are still filling out paper work to see if they might.

We are praying and hoping that the insurance will cover some of it and that John can get the help he needs to survive this cancer. I talked with the insurance company for a while yesterday and if we have to appeal it, then it is up to us write a letter letting them know why John should be able to receive these benefits from the insurance. No pressure of anything!!

If he gets it he will have to go to the doctors office every 2 weeks and get an infusion, (like chemo) but no hair loss, and no nausea!! Why wouldn't John want to do these right?? Even if the insurance covers them we still have a spendy out of pocket copay every time. But it's worth it for John's life!(John as a young boy, with a mullet I must add)

John is 25 years old

We celebrated John's 25 Birthday with family. We went to Outer Limits in Pocatello. With John's sister Clarissa and her family, Missy and her family, his Mom, and my sister Chelsey and her boyfriend Chris. Almost everyone played laser tag and we all played lots of video games. We had a great time. John said the laser tag was fun even though he lost. :)

For weeks before his Birthday John let me know that he wanted to take one bite of cookie. He wouldn't stop talking about it. So my gift to him was this huge chocolate chip cookie cake from Mrs. Fields.

Then he wanted to eat one more bite of h is favorite Pizza Hut pizza. So we ordered a pizza just for John. He was so excited because he had not cheated at all on his diet until then. Before this diet John would go get a coke and a treat every day,so this was a big deal for him.

Almost everyone gave him money for his gifts which so nice of everyone! Thank you!
His sister Jen got him Dave Matthews Band tickets for this summer down here. It will be fun because before John and I were married we went to the same concert!
Thanks Jen and Jeff, we are so excited, can't wait!

Overall a great Birthday for John! I can't wait for more to come!

JOHN CASPER

JOHN CASPER: A SON, A BROTHER, A HUSBAND, A FATHER, AND SO MUCH MORE. EVERYONE THAT IS LUCKY ENOUGH TO HAVE CROSSED PATHS WITH JOHN KNOWS THAT HE IS THE MOST LOVING, RESPECTFUL, AND UPLIFTING MAN. A COUPLE YEARS AGO, JOHN FELT A LUMP UNDER HIS RIGHT EAR AND DECIDED TO SEEK HELP FROM A DOCTOR. THE DOCTOR DIAGNOSED JOHN WITH A RARE FORM OF CANCER. DURING THE SURGERY TO REMOVE THE CANCEROUS LUMP THE DOCTORS HAD TO REMOVE HIS MAIN FACIAL NERVE. WHICH LEFT JOHNS RIGHT SIDE OF HIS FACE PARALYZED. AS IF THIS WASN'T ENOUGH OF A PREDICAMENT TO SUCH A YOUNG MAN, ANOTHER PROBLEM WAS DISCOVERED. AFTER A ROUTINE SCAN WAS SKIPPED, AND TWO YEARS HAD ALREADY PASSED, MORE CANCER WAS FOUND; BUT THIS TIME NOT UNDER HIS EAR. THE CANCER HAD SPREAD TO HIS LUNGS AND CHANCES OF HIM GETTING TREATMENT ARE VERY LOW. I LOVE MY BROTHER IN-LAW, AND HIS LIFE IS EXTREMELY IMPORTANT TO ME. AS IS ALL LIFE. PLEASE HELP JOHN END THIS JOURNEY OF PAIN, SORROW, AND AGONY WITH A SMALL DONATION SO THAT HE CAN BEGIN A NEW JOURNEY FULL OF BLISS, JOY, AND EXHILARATION.

THANK YOU!!!

BRECK BOWEN

My sister Breck and her kids

Julito and Vanessa

How you can help!!

*I am John's oldest sister Clarissa, I am publishing this post on behalf of my brother because he needs your help. My brother is a great person, not just because I am his sister, but because he really is. He is the first person to help anyone who needs it. He is kind and sympathetic of other people and their situations. He is the kind of brother that makes you glad you have a brother. He always calls my kids on their birthdays and if we aren't together he always calls on holidays to see how everyone is doing.

John is a great father, his girls are so in love with him. They are always climbing on him and teasing him and he is always there making them laugh or helping them tie their shoes or put on their coats or whatever they need. He will sit and hold them when their sick and piggy back with them when they are playing. John is never too busy to be a dad.

John is a great husband and he loves his wife. He helps Tressa with the girls and the house. He works full time and is going to school. He loves to be with Tressa just hanging out, watching movies, playing basketball or tennis. They are always laughing and having so much fun.
He is a great person going through a terrible thing. Please, if you are able, help him and his family. He would be so grateful for any help you can give.

John has been diagnosed with a rare cancer. Rare enough that several of doctors have denied him treatments. There is one doctor that says that he may be able to give him help but John's insurance company may not cover the tumor blockers. The insurance needs some proof that the medication will work, and there is none with John's cancer because they don't have enough patients with his cancer to do research on.

Another option John has is to do a natural treatment with Chemo with a doctor in Reno, NV. The treatment there is very expensive and is not covered at all. Either choice John makes, they are both going to be out of pocket. I know it's a lot to ask but if you could just help my brother, I believe it will be worth it. He wants to try everything. If he went by what the doctors told him, he would be sent home to die. As long as he is trying everything he can, that's all he can do. It's too bad that money is an issue here for such a great guy.

Love,
Clarissa

John's nephews and niece. 2003
Jacob, Erika, Shawn

*I don't think any of us know how we would react faced with our own mortality, until we are. John has faced that fear with strength, courage, and determination- not only once, but twice now. I am so impressed with the man that John has grown to be. The love and dedication he shows for his wife and daughters. The loyal friend that he has been to so many. The giving and caring son he is to our mother. I am so grateful that I have such a caring and thoughtful brother in my life and I am so proud to be his sister.

Much love, Jen

John's family, Jen, Ruthie, Missi, Clarissa

*As I began writing about John many thoughts were streaming through my head. John, A 24yr old kid. My brother and friend. Kind, gentle, soft-spoken, thoughtful, smart (almost genius). But, most importantly what kept coming back,was that he is a husband and father. A wonderful father to Shay (5) and Roxy (3). Two beautiful girls who love and adore their dad.

When I think about John having Stage 4 cancer and possibly losing him the thoughts are unbearable. Every treatment for cancer is expensive. For John the treatments he needs (because of expenses) are out of reach. With the help of family and friends, and anyone willing it doesn't have to be.

John needs our help now- urgency is key. Any donation possible would benefit John and his family greatly. Thank-you and God Bless for helping in anyway that you can.

Missi

*This is a tough situation because I hate to ask for anything, especially money! The difference here is the love for my husband. Just the thoughts that I may not have him soon because of cancer are unbearable. It's hard to imagine my life without him, to take care of our girls without him. Of course I have thought about it, like what about my little Shay with special needs who loves her Dad more than anyone in the world. I worry about her more than myself! What will she do without her Dad??

(John and Shay the day we were all sealed together) Logan, UT 2005

I keep saying I am terrified and these are some of the reasons why. What do I do?? What can I do?? I have to stay positive for John and keep pushing him to try his best. I know that he is my eternal companion, what would I do without that knowledge? That is what keeps me sane!! I love this guy, my John so much!! Please help him, please help me, please help my girls, because we need our John! Anything helps! We love you and thank you all!!!

Humbly,
Tressa

Marsh Valley High graduation 2003

Introducing......

So I just thought about it, what if a stranger read John's blog, they wouldn't know what his family looked like. So here we are, all together the Casper family..............Shayanne (5), John, Tressa, Roxy(3)

Thank you all so much!!!!

Since we found out about John's cancer, we have had loads of support!! It's so amazing how our family and friends have been there through all of this.

John's sister Jen and her family came down right away once we found out. We had a good time with them! We went to Ikea and the boys went downtown. Thank you guys for your concerns and support!

(The Hall family, we both forgot to take pictures, Dang!)

Then John's Mom Ruthie came down and stayed for a week. She helped a lot with the girls, while we went to appointments. Thank you so much Ruthie for watching the kids when I didn't feel like it!!(Roxy and Ruthie)

Then John's sister Clarissa came down and we celebrated Erika's 9th Birthday. Thank you for coming down here, so we didn't have to go up there. :) I hope Erika had a good Birthday! I thought it was fun! Swimming at the hotel was fun too! Thank you for taking our mind of things for a while!(Shay, Shawn, Jacob, Roxy, Erika)

Then John's other sister Missy and her family came down too. We hung out and tried some fun juices for John. Then we went downtown to the Gateway and had a good time! Thank you for coming down, it was great getting the kids together too!

This past week my Mom came from Washington. She showed me tons of recipe's that I would have never known. She just went along with whatever we were doing. She worked all day and stayed up late to chat with me. It was nice having her here since I hardly get to see her. Thank you Mom for doing the many dishes and loads of laundry because I am so sick of doing them! :)

(Suzy is going to hate this pic, but it's the only one I took of her)

Thank you to my ward for all the meals you have brought and for the blessings and fasts that you did!!! Thank you for the flowers and prayers and phone calls!!! I love the ward and we are lucky to have all of you in our lives!

Thank you to John's Dad Lorin, who has sent up from Nevada tons of letters and things to help out with John's diet! Thank you for your ideas, calls, prayers, and support too!

Thank you to Travis and Megan for having us over and making John laugh, and for baby sitting the other night. The girls had fun! Thank you for being there for us!!

Thank you to everyone for the groceries!!!! For the recipe's!! For the ideas!! for the Prayers!!! Thank you for all the worry, prayers, good thoughts, and love that you have given to us!!! I can't even explain how much it means!! Thank you! Thank you! Thank you!!

John the Pilot!

My mom's husband Mike and his friend from work set up a airplane ride for John. My Mom told me before hand and told me not to tell John, that it was a surprise! I was soooo excited for him. I knew he would love it! So the next week when Glen called and left a message, John told me and kept telling me how nice it was of Mike to set this up for him.

So the next week we got a call from Glen, we headed down to Bountiful to meet this wonderful pilot who was going to take John up. Shay and I came along to take pictures of course. My Mom was watching Roxy. When we got to the hanger to see the plane, Glen asked if Shay and I would like to go too! OH BOY was I excited!! I was trying to play it cool, but I was so glad he asked!

We get there to see the plane and we got to meet Glen's lovely wife Loretta. They were so cute and fun to meet. A friend of theirs, Doug was there as well to take pictures. He was fun too! They were great people and I am so grateful to have met them!!

We looked around the hanger a while and chatted for a few. Glen built his own plane, and we thought that was pretty cool! So we climbed aboard his bonanza airplane. He was a great pilot, we had no fears! We all had our own headsets, even Shay.

John got to fly the plane for like 10 minutes. I could tell he was nervous, he kept asking Glen if he wanted to take it back. I was laughing and asked him if he was nervous and he said "YES", Glen kept him calm and he flew a couple minutes longer. I was so proud of my 10 minute pilot John!

We all had such a awesome time! Words can't express how much fun we had and how amazing it was for them to give us this opportunity of a lifetime! Thank you from the bottom of my heart for making my husband John smile so big!!!

Results

What a relief!! We got John's body scan results back. The Doctor told us that the cancer is only in his lungs. We are so relieved and glad that it has not spread. Which probably means that his cancer may be slow growing. We don't know for sure yet, but will find out soon.
The next step is a CT Scan next month to check on the status of his tumors.

Thank you! BODYWorX

It just so happened that Roxy's dance class was at this Gym in Farmington. It just so happened that one of the mom's Christa worked at this gym in the daycare. It just so happened that it was only $10 a month to join this gym at that time. Christa talked me into joining this gym and I have been working out for a couple of months. I love this gym, I love the classes, I love the size, I love the people!

Christa is such a kind person, that once she found out about John having cancer, she decided she was going to ask the owner for John to have a free membership at the gym. So a couple of days later she called and let us know that they would indeed give John a free membership! What a great gift she gave, what a wonderful gym to help John out without even meeting him once! I love this gym and I am so grateful for the charity they have shown me! Thank you so much to BodyWorx!!!

Next week

John is going to get a full body scan to make sure that the cancer has not spread anywhere else. Please pray that everything goes okay for him next week! He is pretty nervous and so am I!

Lucky Little Acorn

I bought this little acorn for John at the hospital one day a couple years ago, after his first cancer diagnosis. Maybe if we surround ourselves with lots of acorns he will have a long happy life!

Today was John's appointment with the CyberKnife Doctor. He was a super nice doctor and was with us for over an hour. He gave us more information that John's doctor at Huntsman has ever gave us. He showed us John's CT Scan and everything. He said that he would not be able to help John at this time because there are too many small tumors and to treat some and not all of them wouldn't do John any good.

He suggested seeing a Oncology doctor that could look into some Chemo, only because John's cancer may be aggressive and it could be more effective than radiation just in John's case. (Maybe). So next week John has several appointments with several doctors that we are hoping for some type of treatment plan. So the plan right now is to get all the opinions that we can and see what they all have to say.

John has been very positive since we found out about all of this, so if he can do it so can we.

John's Diet

THE BUDWIG FLAX OIL DIET is into action at our house. John has been keeping up on all of his natural herbs and medicines that we are hoping will help with his cancer. While reading all about his diet, we found out it is almost like a Vegan diet. So no meat, milk, cheese, almost everything that we all love.

So today Roxy and I went on a mission to find some food that John CAN eat. We went to the Good Earth market in Riverdale. and then off to Walmart to compare the prices of the organic food there. The conclusion is that Good Earth is a lot more expensive, but they have more of a variety. It is worth it for him to have what he needs to get better.

As long as John is trying everything he can and not giving up that is all he can do. Tomorrow he has the appointment for the CyberKnife. We will see what they say and I will write about it tomorrow.

Thanks everyone for your love, support, thoughts, and prayers!!

Second Diagnosis

On January 6th 2010, John and I woke up to our worst nightmare! Right before Christmas John was complaining about a pain in the left side of his neck. So I called the Hunstman's to get him in right away for a MRI. He has been getting those regularly to scan for any signs of his cancer coming back.

Before this year everything has been fine since his last treatments in 2008. So he went in for his results on Monday the 4th of Jan. and asked the doctor what happened with his results from his xrays they got in October. When John was first diagnosed in Sept 2007 the Doctor said that Adenoid Cystic Carcinoma could spread to his lungs later on in his life, but that he would take care of him. So when John asked about his xrays in Jan he said oh well lets get you a CT Scan to take a closer look. So on Tuesday John had the Scan.

The next day his Doctor called me and said that John has lung cancer but that he needs a biopsy to find out what kind. John has 5 cm size tumors on each lung and a 50 cent piece size tumor on his left lung. So John got a biopsy on Thursday Jan. 14th.

His doctor called us and let us know on Saturday that John's cancer has metastasized into his lungs. Which means that the cancer that he had before is now in his lungs. So John does not have lung cancer he has stage 4B Adenoid Cystic Carcinoma in his lungs. Also the Doctor told John there is nothing that they could do for him.

Chemo does not work for Adenoid Cystic Carcinoma, they can't operate on his lungs, and radiation may still be an option for him, but for right now we are not sure.

He has been taking some herbs that we hope may help, but we are not even sure how fast the tumors are growing. Today he made several appointments with other doctors to get some more opinions. If we find out that nobody can help him here, we are going to go to the Cancer Treatment Centers of America in Arizona or Washington to get some help from them as a last resort!

We are hoping for a miracle right now, and the only word I can think of right now is terrified. I hate that he has to go through this again. I know God has his plans, but sometimes I don't like them.
Please pray for John and if you talk to him just let him know how much you love him and care about him. It's coming up on our 6th anniversary on February 2nd. So we are just trying to stay positive and enjoy our time together. I love this guy more than anyone and I can't imagine my life without him.