Chemo - Round 4 Done!

Round four of chemo went well this week. The new medicine is working and no sickness. Dakota had some sickness last week but hopefully we can head that off this time. He did get another new injection this week that is causing muscle spasms in his chest and arms. Called the doctor tonight and told us to give him a pain pill. Still having some spasms but hopefully they will subside. If it continues to worsen we will take him to the doctor this weekend. Dakota slept a lot after the first round and was a little cranky. When he came in Thursday the nurse asked him what was wrong because she could tell he wasn’t his normal self. I just love his nurses and how they know his name and get to know each and every patient. Dakota gets anxious each time he gets ready for treatment and dreads it more each time. It’s hard to be 20 years old and stuck at the house all the time but I don’t think that’s the part that bothers him the most. The sickness is what he really dreads but hopefully he won’t have that any longer and he will have a better attitude. I had talked to his nurse about Hodgkin’s and if she knew if it was hereditary because David had read that it was but I hadn’t seen that while looking on the internet. His nurse went home and looked it up and said that it was hereditary. I thought it was amazing that a nurse would take the time to look it up after she went home. That just goes to show you how great the people are at St. Anthony’s.

We have had a busy couple of weeks. David and I celebrated our 25^th wedding anniversary on Sept 12^th. I was able to get all the kids together and get family pictures for the occasion. The next week I went to the State Fair with my sister and her grandkids to see Disney on Ice. My sister takes us all every year and the kids get to ride the rides. I took a lot of pictures at the fair. David’s parents made a surprise visit from California and we had a nice visit with them. Then on Sunday we had dinner with all of the Oklahoma Miles crew at a Mexican restaurant and I took pictures there too. Lots of pictures in the last few weeks. Of course I can’t post many on here but I will post a few.

While at his first round we sat across from a gentleman about my age with Hodgkin’s, stage one. We had a nice talk and compared symptoms from the medicine. Even though he is stage one they are both on the same medicine. Both are having problems sleeping. I thought it was because he doesn’t expend energy during the day but I guess it’s the medicine. The man remembered seeing us before and told me that I looked much calmer this time. So much for thinking I looked calm and collected all the time. He told me a few times so I must have looked a mess. Of course I don’t remember seeing him because I only had eyes for Dakota. It’s funny the people God places in your life at just the right time. Dakota was feeling blue and it was good to talk to someone going thru the same thing.

God did place some scripture in front of me, and he did it three times in two weeks. How can you ignore that? We receive a magazine from Jesse Duplantis. We had the opportunity to listen to him last spring at Meeker and really enjoyed him. He definitely isn’t a Baptist, as he will tell you, but I enjoyed his message and his magazine always seems to have an article about something we are struggling with. Last month was faith and those with super faith. This month the he talked about a woman with an issue of blood from Mark 5:25-34:

25. A woman in the crowd had suffered for twelve years with constant bleeding. 26. She had suffered a great deal from many doctors, and over the years she had spent everything she had to pay them, but she had gotten no better. In fact, she had gotten worse. 27. She had heard about Jesus, so she came up behind him through the crowd and touched his robe. 28. For she thought to herself, “If I can just touch his rode, I will be healed.” 29. Immediately the bleeding stopped, and she could feel in her body that she had been healed of her terrible condition. 30. Jesus realized at once that healing power had gone out from him, so he turned around in the crowd and asked, “Who touched my robe?” 31. His disciples said to him, “Look at this crowd pressing around you. How can you ask, ‘Who touched me?” 32. But he kept on looking around to see who had done it. 33. Then the frightened woman, trembling at the realization of what had happened to her, came and fell to her knees in front of him and told him what she had done. 34. And he said to her, “Daughter, your faith has made you well. Go in peace. Your suffering is over.”

This same scripture was given at church the following week. Then our friend Dave gives us a book called A Message from God and it has the same scripture in it. I believe God is telling me to have faith, loud and clear. Got it! Message delivered. Thank you.

I didn't know if I wanted to post because I didn't think that I had anything to really write about.  Geesh, don't leave me alone with a computer!

Family picture:  Blake, Paige, Dakota, David, Syndi

 Eating cinnamon rolls at the fair before Disney on Ice

 Where do all young warriers carry their swords?  Stuffed in their sweat pants, of course!  Oh my gosh, I love this kid and his faces!

 All four of them riding a ride and trying to catch the bubbles.  Love all of their faces in this!

 You ask "why does my sister look like a crazy person?"  She is laughing because her grandson fell.  She is a sick person.  She's trying to block the camera from seeing her sickness.  I'm surprised that the picture isn't blurry because I was laughing so hard at her.  No worries, her grandson was fine and he just kinda stumbled but it doesn't take much to get her started.  She'll love me for this picture.  LOL

The cousins

 David's brother, Darrin and his wife Christy

 David's parents, so sweet!

 The Miles crew.  Notice the family resemblance in the men?

 Bill, love the smile!

 David hugging his mom good-bye.  He loves his momma.

 Of course the guys had to show that they could climb this gate.  I love how Blake has his hands out to catch his brother. 

 More of the cousins

 Dakota hugging his grandma good-bye...sniff, sniff

Romans 8:11 “But if the Spirit of Him that raised up Jesus from the dead dwell in you, He that raised up Christ from the dead shall also quicken your mortal bodies by His Spirit that dwelleth in you”

Third Round - DONE!

Dakota has completed his third round of treatments.  His breathing check went really well and his lungs and heart look good so far.  He also gained 2 lbs in the last month so that is good news.  This round has went really well as far as sickness goes.  He was given a pill last time to help him process his food faster and to prevent his food from sitting in his stomach and another pill to knock him out.  They also gave him another nausea pill so he now has three different pills for nausea.  We are starting to look like a pharmacy.  He takes a blood thinner every day along with his multi-vitamin.  The blood thinner is taken to prevent blood clots near his port area.  They also ask that you take Tylenol and Benadryl during your treatment as well.  Our job is to make sure that Dakota takes all of the medicine.  He doesn’t even like to take aspirin.  We aren’t the type of people to take medicine unless we are feeling pretty rotten. We have to adjust to this new way of thinking and make sure that he takes everything or he could be very sick.  His everyday routine isn’t too bad as he only has to take his blood thinner, multi-vitamin and nausea pill if needed.  During treatment days he takes Tylenol, Benadryl, multi-vitamin, two nausea pills, pill to help digest food, and the pill to knock him out.

Here is a picture of some of Dakota's pills and his handy dandy barf bag that we take in the car.  The chemo lab gave this to us.  Much easier to carry around instead of the small trash can that we had been bringing.  Luckily we haven't had to use either one of them but nice to have. 

We see the doctor once a month and he was very happy with Dakota’s progress and he will take six treatments and then about mid-November he will have another PET scan to see how he is progressing.  We were under the impression that if the PET scan went well that he would be finished with treatment. We found out this week that he will continue until January, so six months of treatment…UGH!  I was so hoping that we would be finished by Thanksgiving.  He will have 12 treatments in all.   

I did learn anther good lesson this week.  Dakota did go out last Friday.  He came home early and I asked him why he was back so quickly.  He said, “I felt like everyone was staring at me.”  I remember seeing a woman at a football game and staring at her and my thoughts went like this: 

1.     I wonder what kind of cancer she has

2.    I wonder if she’s going to be ok

3.    I wonder if her family is ok

4.    Why is she all covered up in 90+ weather

5.    How can she stand to be out when she probably feels bad

What I should have done was ask her all of those questions or at least some of those and stopped staring at her.  I did find out from our dealings with chemo that you have to stay out of the sun during treatment because it makes you very sun sensitive.  I also learned that you can’t expect a cancer patient to sit in their house all the time.  Dakota spends pretty much every day sitting at home and trying to get stronger.  We make every effort to make sure that he can get out on weekends between treatments.  I think people dealing with cancer would appreciate it if I acknowledged them and talked to them instead of staring.  I know that I am so afraid to say the wrong thing or be inconsiderate but I think talking to that person instead of staring is a much better option.  Lesson learned for me!  I'm sure it won't be my last.  Seems like every week I learn something new.

Had a good time with my sister and her family last Saturday and Sunday and took a few pictures.  I love hanging out with them and we always have a good time.  Our family is the glue that holds us together.  Unfortunately we don't get to see David's family much since the majority of them live in California but they are all behind us 100% and are always here for us.  Family is a great thing and we are fortunate to have encouraging and loving relatives.  

Here are some pictures from last week when I sent David off with the camera to his brothers house.  This is David's brother Darrin and his sister Dayna. 

 Darrin, his wife - Christy, Dayna, Francesco, and Darrin's son - Myles

This is from last Sunday.  My nephew Austin playing with the kids

My neice Gracie and my nephew Raylan

 My nephew's wife Holly and my sister Danita

 Gracie & Raylan

 My nephew Ben

 My best friend/sister Danita

 Dakota and my nephew Rhett

 My neice Amanda

 Danita and her husband Larry with Raylan.  You can always tell the ones that love my camera, see the grimace.  LOL!

 My nephew Cameron

 The day wouldn't be complete without sword fights

  

I also took some pictures from the Third Day concert.  My favorite new song is from Trevor Morgan and it’s called Jesus Rides the Subway.  He played this song with Third Day and I absolutely loved it!  I posted the link on Facebook if you would like to listen to his song.   I was going to post those pictures but I guess you can only post so many pictures on here.  I had a great picture of the band and of Dakota chowing down on a turkey leg.  Anyway...a good time was had by all and we made it home at 2 a.m. on Monday.  Good times!

 

Romans 5:3-5

3.  We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  4.  And endurance develops strength of character, and character strengthens our confident hope of salvation.  5.  And this hope will not lead to disappointment.  For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hears with his love. 

Happy Labor Day week-end!  We are looking forward to going to Tuskahoma on Sunday to see the band Third Day.  I know Dakota is bored sitting around the house all the time but I am glad that he is getting to take this time to rest and get better.  He did seem to take a little longer to recover from chemo this time around.  I’m thinking that it may be a little tougher to come back each time as your body is getting weaker.  Treatment will start on Tuesday of next week and go thru Thursday.  Dakota will see his doctor first and then go to his treatment on Tuesday. 

Last Sunday morning Dakota calls me to the bathroom and is standing at the door dripping on the floor with the shower going, “Mom, my hair is falling out.  Every time I run my hands through my hair I have hair all over my hands.”  Dakota decided to be proactive and shave his head.  We were told that his head would be sore as his hair follicles are dying and his head was a little sensitive this last week.  I did get to take pictures of David shaving his head last Sunday.  Not sure if all of his hair will fall out but it looks like it’s still growing so he may have jumped the gun a little bit. 

Before picture

David having a little fun with Dakota’s hair.

Dakota wanted to take a picture with Paige.  She didn’t want to take pictures, it was late at night, she didn’t have on make-up and her hair was a mess.  Of course bald trumps no make-up and bad hair so she took the picture. 

David and Dakota together with their bald heads.  This could be something that Dakota needs to get used to since most Miles men are bald.  He’s still holding out with the hope that he will take after the Watkins side of the family and get to keep his hair. 

We like to make jokes about cancer and have fun with it.  We tend to not take anything too seriously around our house and pretty much anything is open for jokes.  We have let Dakota live the good life around our house and he does a lot of sitting around and doing nothing.  He has really taken advantage of it and doesn’t clean his dishes or laundry.  He has cleaned the house once and the bathroom once.  We have given the kids chores since they were little so this is a big thing to get to sit around and do nothing all the time.  Here is a conversation between our family:

Me:  Dakota would you please cut up some tomatoes and lettuce for me?

Dakota:  (very pathetic with a big sigh) I don’t feel like it but I’ll tell Dad that you need help.

Me:  Seriously Dakota, you can’t cut up some veggies?

Dakota then goes and tells his dad that mom needs help.

David:  What do you need help with?

Me:  (laughing)  I asked Dakota to cut up tomatoes and lettuce.  I think he can handle that. 

Me to Dakota: (still laughing)  Ahhh, the life of a cancer patient.  I think you can sit down in that chair and cut up tomatoes and lettuce.

He did cut up the lettuce and tomatoes with lots of sighing.  He was pretty wore out from the 5 minutes that it took to cut them up.   I thought the whole thing was funny.  Maybe didn’t come off as funny as it was but we’re funny…really.  Maybe we’re just funny to us and not to everyone else.  I think you have to have a pretty dry sense of humor to get us but trust me we are funny.  But seriously, he has been very tired this week but is feeling a lot better now.   

Wednesday the children at church all wore their “Pray for Dakota” bracelets and prayed for him.  Here are a few pictures from Ms. Trinity.  We are so touched to see children praying so fervently for their brother in Christ. Too sweet for words!  Thank you Ms. Trinity and Ms. Susie for thinking of it. Of course, thank you to Erin and Nachole for making the bracelets.  Love you guys!

Last week I mentioned that David’s sister was visiting from California.  I sent David off with the camera while I stayed home with Dakota.  I was really wanting pictures of all of the siblings together but David did something that I would do and left himself completely out of the pictures.  Luckily I took some pictures on Thursday with David in the pictures. 

David's sister Dayna with her husband Francesco

I have more pictures to post with David's brother, Darrin and his family but my computer isn't cooperating right now so will have to post them later. 

I hope everyone has a safe and enjoyable weekend. 

James 1:2-4

Dear brother and sisters, when troubles come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow.  So let it grow, for when you endurance is fully developed, you will be perfect and complete, needing nothing. 

 

Chemo - Day 3, Second Round

Today was the last chemo treatment for this round. It went about the same as it did last time. Friday seems to be his worst day as far as being sick. This morning he was sick six times and we finally made it to hospital to get his shot. I told them how sick he had been and they took him up to the hospital and gave him an IV for his dehydration and medicine to help him sleep through the sickness. It took awhile but he is sleeping peacefully at home now and even ate a sandwich. He will probably sleep most of the day away tomorrow and a little less on Sunday and start feeling better by Monday. He looks much better now since having the IV. I think we have a routine down now and know what to expect the next time and they have given him more medicine that he can take at home so hopefully he won’t have to do this again. All of the medicines do scare me a bit. This one could cause heart damage, this one could cause lung damage, this one could cause permanent mouth ticks. It’s all pretty scary at times. The bad thing with chemo is that it kills your good cells as well as your bad cells. I wish that there was a better way to treat cancer and I pray for a new way of treating cancer that doesn’t seem so barbaric. I’m glad that we have chemo but at times it does seem crazy that we still treat cancer the same way as we did many years ago.

I always wonder what in the world am I going to post about that doesn’t seem like I’m rambling on, or I worry that I am boring people to death with this blog. Somehow a new experience will come to us or something happens that I feel like I need to talk about. Sometimes I will stay up late at night because I am writing a post in my head and thinking about what I want to say. One thing that David and I have come to the conclusion is that we need to be better about comforting people when they are going through difficult times. Normally we have no idea what to say and generally don’t say much at all. I always think that I am intruding and I don’t want to make that person sad by brining it up. I notice people look at us with the saddest expressions. I know I would do the same thing when I knew someone had been through traumatic experiences and I had no idea what to say to them. Don’t worry…I’ve been in your shoes and I never know what to say. It doesn’t offend me and I know that you are just like me and at a loss and don’t know what to say. New experiences give you new perspectives on life and how you handle situations. I know now that people do appreciate the kind words and if you don’t say anything, I still know that you care and are thinking about us. I realize with people looking at us they are wondering what we are going through and if we are ok. I realize that this is a challenge and we have the opportunity to show that we know God is in control. Not to say that we don’t have our weak moments but ultimately we know that we aren’t in control and God will bring us through this.

Jeremiah 29:11, “For I know the plans I have for you, “says the Lord. “They are plans for good not for disaster, to give you a future and a hope.”

No pictures today. David is visiting with his sister who is here from California and I pushed the camera off on him. He wasn’t too happy about being on camera duty again but he took it. I will post pictures later for David’s family in California. I didn’t get pictures of Dakota at the hospital for the past two days. I thought those pictures were getting a little old and you have all seen him sitting at the doctors office. I need something new to take pictures of. David will be on duty next time. Glad that I have a spouse who takes such good care of us and that I have a partner that shares the responsibility. I think he’s probably a better nurse than I am. Thanks for keeping up with us and for following along on this blog.

Week 2 of Chemo

Today was the first day of Dakota’s second round of chemo. One of the medicines that he needs has been on backorder for a very long time but somehow the hospital found the medicine that he needs and gave it to him today. The only hospital that had this medicine was in Houston so I’m very happy that the medicine was found. We will have a long day tomorrow at the hospital as we will have to be there early for a test to check his lungs. The new medicine can cause damage to the lungs so they want to make sure that his lungs are healthy. We will need to stay there until about 1:00 or 2:00 for his 22 hour medicine from his fanny pack to finish.

I just have to give our family doctor props for being so great. I started seeing her about three years ago and David just started seeing her a few months ago. Dakota had been going to Shawnee, which is where we used to go as it is closer to home.  He made a few trips to see them but went undiagnosed.  We decided to send him to our doctor in the city. She is the one that sent him for his CAT scan and found out that we were most likely dealing with cancer. She called Dakota and told him the results because he is 20 and that’s what they do. She knew we would be worried so she called us at 8:30 at night and talked to us for about a ½ hour or 45 minutes. She has always called me about 5:00 or 6:00 at night to give me results from tests that I have had and will spend at least a ½ hour with you at each office visit. She puts in some long hours and really worries and cares about her patients.  I love her! I have never met a more dedicated doctor. I had to see her this week and of course she knew that I was Dakota’s mom and the first thing that she said is “I’m so sorry that you are having to go through this.” She then spends about 15 minutes talking about Dakota and taking notes on his chart. She finished talking about Dakota and went to my chart and started crying and had to take a moment to compose herself. She said “I’m just so sorry that you have to go through this.” My doctor cried for us…I was amazed. We aren’t long-time patients and she has only seen Dakota one time. She has been there for us the entire time and will call and ask us what’s going on with his treatment, and she gets frustrated when she sends him to the doctor and they don‘t give her the results. This is an example of someone following their calling and I am so glad that she did. What a blessing she has been in our lives. We could still be struggling to find out what was wrong with him if she hadn’t taken that extra step.  Everyone else had said that his blood work was good so it couldn’t be cancer. We are taking his cancer treatments at St. Anthony’s and the doctor and his nurses are great as well. They are all so kind and answer all of our questions even when they are swamped like today. My niece Amanda is a nurse and I have even more admiration for the work that she does and all of the other nurses and doctors. It certainly takes a special person to serve the sick.

Many of you ask what Dakota’s symptoms were and I’m sure it’s so you can go home and check your loved ones; that’s what I would do. He had a gland on his neck that would swell and go back down. We didn’t think much about it since that seems to happen to many people. We thought he was just fighting some kind of cold or allergies. His lymph node swelled up to golf ball size and he went to the doctor. He was given antibiotics and was told if he still had problems to come back. The next week he had a rash all over his body and he went back to the doctor and they gave him a shot and more antibiotics. He would run a fever sometimes and feel bad and then feel good again. He had lost 20 lbs but we attributed it to his new job that required him to work 12-14 hours a day. Most of the time we would tell Dakota to get more rest and quit running around all the time. His health went downhill after his lymph node swelled to golf ball size. I never knew that all of these things are all indications of Hodgkin’s. Weight loss, itchy rash, swollen glands, and the last sign was pain in his back. I have heard of other people that have had rashes and were later diagnosed with cancer. I never would have imagined that a rash could be a symptom. I don’t say this to scare people with a rash but to be proactive with your health.  If we had been more proactive we might have had a diagnosis much earlier. 


                               Starbucks heals all ills. Notice the venti drink beside him.

                                  Dakota loves my camera, can't you tell by his expression?  lol

Once again, another happy expression.  I don't think he was happy to know that he will be sick again. There are good days and bad days.  This was his not so good day.

                      Food always makes him a little happier so mom was happy to feed him 

He just finished off 1/2 of a  Digornio pizza after this feast.  He's still a skinny little thing but glad he's eating.

Dakota's friend Erin came by tonight.  We all love her.  I love watching them together.  They have been together since they were babies.  I will have to track down their baby pictures with Dakota holding Erin sweetly.  They even took some of their senior pictures together. Notice that he looks a little happier. 

                               Erin and Nachole had these wristbands made.  Love, love, love!

                                      This didn't turn out very well but it says 2 Corinthians 4:16

Will try to post again tomorrow.  Found a scripture that I liked today:

Proverbs 3:5-8 “Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. Don’t be impressed with your own wisdom. Instead, fear the Lord and turn away from evil. Then you will have healing for your body and strength for your bones.”