Chemo - Round 9

 
Chemo – Round 9
 
The numbers are getting bigger and we’re getting closer to being finished with chemo!  We are hoping that January 11th will be his last chemo session.   Received really good news from the doctor this week.  Dakota had a heart test and he was in the normal range.  We had been really worried that he had heart damage from the chemo because he tends to have a lot of chest pain.  The doctor thinks that it’s acid reflux and gave him medicine.  The doctor said that his blood work is looking better every time and that means that the cancer is going away.  Dakota is starting to recover faster after each session.  He’s starting to feel a little normal again by Monday but lives in a fog from Wed – Sun.  We were also worried that he is having a lot of back pain which was one of the symptoms of cancer but the doctor thinks that this is caused by inactivity.  We won’t know if the cancer is gone until he has a bone marrow test.  The test can’t be given until he has recovered from the chemo and everything is back to normal.  I breathed a sigh of relief after this doctor’s appointment because I was really worried about his heart and his back. 
 
I know Dakota is ready to live a normal life again.  He has decided that he isn’t cutting his hair or shaving, and he is going to look like a mountain man.  I’m ready for that day too!  This was a kid who shaved everything and thought chemo might be cool since he wouldn’t have to shave anymore.  It’s funny the things that you miss when you no longer have them.  Dakota has gained most of his weight back and I think he looks really good and much healthier.  I know he is ready to get back in shape and plans to start that as soon as he is finished with his last treatment.
 
We have learned a lot about how to fight off his sickness.  The Amend that the doctor gave him for the sickness has been a godsend. We have learned that whoever goes to work needs to give Dakota his medicine before we leave at 5:00 a.m.  We give him all of his medicine at that time and then he takes whatever he feels like he needs when he wakes up.  He has learned to doctor himself up before he goes to treatment.  Remember that this is the kid that wouldn’t even take aspirin when we first started.  I told the nurses what he was taking and they said “whatever gets him through.”  He takes one anti-anxiety and two pain pills and this makes him a little silly.  If he doesn’t take the medicine then he gags the entire time and can’t calm down.  We can’t even talk about his chemo without him gagging.  Normally he acts a little silly on the ride up to the hospital and then he crashes for his treatment and that’s always a good thing.  We normally won’t see too much of him until Saturday because he sleeps until then.  He is still blessed with a very healthy appetite and we are very happy that he has gained weight when so many tend to lose weight.  I was showing his nurse the blanket that was made for him and the ties that show when someone has prayed for him.  The nurse said “no wonder he is doing so well.”  I should have told her that we have a whole community and many that we don’t know praying, so YES there is a reason that he is doing so well.   
 
It’s nice to have some good news and glad to report  we are all doing well.           
 

Grandma Was One Tough Lady

I have thought a lot about writing about my mom.  I went back and forth about if I should write about her or not. We have thought about her so much since finding out about Dakota having cancer. I call my sister a lot and ask her "how did mom ever do this?"  Dakota came home this week and said, “man, grandma was one tough lady.” My mom was diagnosed with breast cancer when she was 45. She went through three rounds of treatment before she succumbed to the disease at the age of 50. I have always shared stories of my mom with the kids and how tough she was but I don’t think any of us really understood how tough she was until going through it together. My mom was a very shy woman and many may have thought she was stand-offish but really she was extremely shy. I always thought it was sad that so few people really knew her but that’s the way she was. I see a lot of her in myself and my kids. We are often misunderstood and thought snobby when we are really just socially awkward. Another thing that we inherited from her is her strength. I don’t think we will ever be as strong as her but we did get a little of her backbone. Some people have said that we are so strong. I will never see myself as a strong person as I will always compare myself to her but I have a little bit of her in me.

Why do I think my mother was so strong? I will share a few things that are a testament of her strength. My father died unexpectedly at the age of 40. My mother and father were on vacation and my mom was gearing up to start her new job on the following Monday. My father stepped outside and was struck by lightening and died instantly. We buried my father that week and my mother started her new job on Monday and didn’t tell anyone that she had just buried her husband the week before, and that she was left with three kids to support.

She never missed a day of work for sickness and I don’t remember her ever being sick until she was diagnosed with cancer. Even going through chemo she made her appointments late in the day and still never missed work, even though she felt terrible. She always said “why would I stay home? To feel sorry for myself?“ By the time that she was diagnosed with cancer all of her kids were grown and out of the house and she lived alone. She went to work, chemo, came home and did it all again. Every time that we go to chemo now and see a woman sitting there by herself we all think about my mom and we instantly feel sad for the woman sitting there alone. Later in her fight with cancer she was diagnosed with bone and liver disease. Both are excruciating but she still went to work and tried chemo one more time to try to ease the pain. She worked until two weeks before she died. Her biggest fear was that she would be a burden on us and that we would have to take care of her. The first day that we would have had to take care of her by ourselves she died in her sleep at home. She never wanted to be in the hospital and never wanted oxygen or anything to help her in the final days. The last day she was struggling terribly. We tried to put oxygen on her so she could breathe and get some sleep. We tried everything to try to get her to put the oxygen on. My mom told us in no uncertain terms that she would not put the oxygen on. I had to laugh that even in her final hours we were not going to tell her what to do. That’s my mom and I loved her for it. I thought it was so her. Just a last reminder that she was one tough lady.

One other piece of advice that my mother gave me when I was whining about something. “Syndi, there are people in this world with a lot bigger problems than you will ever have.” My mother didn’t correct me often but when she did I took her words to heart. I have always remembered that and I know that no matter what my trial is, there is someone out there who has way bigger trials than I could ever imagine. Thank you for that.

We are her legacy and I hope that we are living up to what she expected of us. I know that this blog is about Dakota and his journey but she laid the groundwork for how we handle this. I love you mom and you will always be my hero and the strongest person that I ever knew, or ever will know. Thank you for being such a great example for me and making me the person that I am today. I am so thankful that you were picked especially for me. I love you Mom.

Grace Watkins - my mom



Chemo - Round 6

I haven’t posted in awhile because there wasn’t much to tell. Dakota is on his second day of round six. The next PET scan will be in December. Not sure when they will do the next bone marrow test. The doctor seems satisfied with Dakota’s progress and everything still looks good. The biggest problem that he is having now is a little bit of panic attacks when he goes to get his chemo. He starts shaking and has even been sick just going in the room. When we walk in he smells the room and instantly feels sick. I smell nothing but of course I’m not taking the medicine. He tastes and smells the medicine so it’s not a pleasant experience for him. Today they gave him a prescription for an anti-anxiety pill. Hopefully that will help him chill out a little. The chemo changes his tastes and there are things that just don‘t taste the same. One of which is soda, but I don’t consider that a big loss. He eats pickles now and that wasn’t something he ate regularly before. The medicine also makes the skin in his mouth peel, but that isn’t a big deal just a little annoying. The doctors are also giving him steroids which makes him very cranky. We have learned to just let him sleep and not bother him too much for about five days. He loses a few more eyelashes and eyebrows every time he takes chemo but he still has a little left. He thought losing all his hair was going to be cool since he used to shave his body. Don’t ask me…something about man-scaping. He has decided that it’s not so cool when you don’t have a choice. Maybe he will be a hairy bear once all his hair grows back. He said he may even try a beard. It’s amazing what you appreciate when you no longer have it. He has been very blessed that he hasn’t had a cold or anything. We are very fortunate that none of us get sick very often so hopefully we will make it through the cold and flu season without any sickness.

A few weeks ago I read all my posts on the blog and was amazed at the things I had already forgotten about, so I’m really glad that I’m writing it all down. Maybe someone who is going through this in the future will be able to read this and have an idea of what will happen each time. I know it was nice to talk to someone who is taking chemo with Dakota, that is on the same medicine and we compared notes.

I do know that we are all ready for this to be over and get back to a normal life. Right now Dakota is very tired of being sick and tired. He wants to feel normal and live a normal life. He feels like he looks very strange and is feeling a little insecure about how he looks. Of course, I still think he looks handsome but I’m a little biased. I thought it would be strange when he lost all of his hair, and it would make me sad to see him. All I see when I look at him is how proud I am of him and I don’t feel sadness. I would imagine that a lot of that is from all the prayers that we have received. I know we couldn’t do any of this without your prayers and God’s grace.

I am always touched at how many people are praying for us. Many churches are praying for Dakota and they don’t even know us. Last week a friend of mine from work brought me a quilt that his sister’s church had made for Dakota. Emmaus Baptist Church in Oklahoma City has a Prayer Quilt Ministry. This was written on the brochure that we received with the quilt. “The prayer quilt is a lap-sized cover, hand-tied with square knots. As each knot is tied, a prayer is offered for the person who will receive the quilt. When fully tied, the quilt is given as a gift of love and prayer. Each prayer quilt is a statement of our faith in God and our belief in His power to comfort, encourage, strengthen and heal.” What a beautiful ministry this church has and we are very honored and touched that you thought of us. Thank you!

The school also had a Power Puff football game that was put on by FCCLA and Keri Laxton. The officers in FCCLA and Keri decided to give the proceeds to Dakota to help with the medical bills. We are so very touched by your kindness and want to thank each and every person that helped with this. I know Dakota has been overwhelmed with how kind and generous everyone has been. Keri Laxton, you are a class act and we appreciate you.

Many people have been very kind and send encouraging notes, texts, emails, cookies, presents. It would take me forever to list all of them and I’m sure I would forget someone along the way. Just know that your kindness is never taken for granted and we appreciate and love all of you.

Dakota at chemo with his quilt.  He has learned to sleep through chemo.

 Paige is on fall break and went with us to chemo

 She shared his blanket.  It's cold in there!

This scripture was on the brochure from the church that made Dakota’s quilt and I thought I would share it with you.

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1.3-5

Amen.

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.