Friday, August 26, 2011

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.

Wednesday, August 24, 2011

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.”

Thursday, August 18, 2011

A Personal Post

I hadn't posted for a little bit and thought I should update everyone on Dakota. He had a few rough days last week. Had some sickness and a lot of sleeping. His appetite has remained strong and is still about to eat us out of the house, but we are happy about that. I started thinking a lot about this blog and what I wanted to share. If you know our family then you know that we are a very private family. We felt called to do this and share our story. We don’t share our story to get sympathy. I worried that people would think that we were doing this to get attention. If you know us then you know that we are the type of family that stays in the background and not big sharers. Not sure who this blog is supposed to touch or reach but I know that we are meant to do this.

I also didn’t want people to think that this has all been sunshine and flowers for us. We are relying on our faith to get us through but to say that we haven’t had our doubts would be wrong. When we first heard about the possibility of cancer we were terror stricken and just kept hoping for a healthy outcome. David was and still is my rock through it all. When we found out that there was a possibility of cancer David was in a little bit of denial that this could happen to our family. He kept saying “God wouldn’t give you a child with cancer.” My greatest fear in life is cancer. My mother, grandmother, grandfather, and step-grandfather all died of cancer. I haven’t had a family member survive cancer. I always thought that it would be me or one of my siblings that would get cancer but never one of my children. David and I have been able to talk openly about our feelings and fears with each other and one day I was telling David that I didn’t know why God would give my child cancer when he knows that is my biggest fear. I was able to answer myself and knew that God was going to show me that cancer can be beat and it’s not a death sentence. I always wondered how David and I would do if something big happened to one of our children. How would we be together? We now know that we are even stronger than we thought. When I am weak he is strong and vice versa. Through it all we have looked for the lessons learned in all of this and first and foremost is our faith and what it can withstand. I know great blessings come out of great hardships and they are always there if your eyes are open.

1. I have a son and family that inspires me in so many ways.
2. I have a marriage that sustains even in the toughest of times.
3. I have family and friends that have surrounded us in prayers, offers of help, and well wishes.
4. God’s got this. His plans are better than we could ever dream.

What more can a person ask for?

A little about Dakota; not once have I seen him get depressed, ask “why me?” or show anything other than a strong spirit. David had posted on his FB wall that he always wanted to be Dakota’s hero and instead Dakota is his. I see people ask Dakota how he is and he always says “I’m good” even when he’s not good. I know that God has big plans for Dakota and he is open to those possibilities. I am excited to see what is in store for his life.

What do I hope to accomplish with this blog? I have no idea. Maybe you know someone who is or will face Hodgkin’s Lymphoma and you can send them here to see how one family dealt with it. Who knows? God does.

Here is a picture of Dakota and his sister Paige at his treatment last Friday. Dakota said that the paparazzi wasn’t there so David only took one picture. No worries though, Mom will be back on the job next Wednesday - Friday. See you then!

Thursday, August 11, 2011

2nd Day of Chemo

I decided to stay with Dakota today with David.  It's just too hard to go to work and not know what is going on.  We had a quick day at the hospital and only had to get a few shots in the port and have his needle taken out.  He finally gets to take a shower.  He hasn't been sick yet, they said that many times young people don't get sick like older people do.  He slept great and is doing a lot of that lately.  His appetite is good and eats everything in sight. His breakfast tasted weird this morning but that was because of the medicine that he was getting.  He said that his dinner tasted fine. 

We have seen a strange thing going on at the cancer center.  We have seen many men in there and every single one of them has a woman with them and it's generally their wives.  When we went to the chemo class it was all men and they all had women with them and the women had out notebooks taking notes.  The sad thing is we have seen many women in the cancer center and every single one of them are all alone.  What is up with that?  Makes me sad to see them there all alone.  I'm thinking the next time I hear of a woman that is going for chemo, I will ask her if she has someone to go with her and if not then I will offer to go. 

Getting ready to say good-bye to his fancy fanny pack...until next time. 

Dakota loves to give me this terrible grimace when I take his picture.  David and Dakota thought they would both give me the grimace. 

Leaving the hospital with my boy...I mean grown son.  Sorry, he will always be my little boy even if he is 20. 

Text today from our friend Jarrod:  Romans 8:37, "In all these things we are more than conquerors through Him who loves us."  Praying that no matter what you face today, you realize that HE has already conquered it for you!

Thank you Jarrod.  To all of our other encouragers, thank you from the bottom of our hearts.  It is so overwhelming to see God's love shown through all of your emails, text, and phone calls.  What a blessing you have all been to us!

Wednesday, August 10, 2011

Day 2 - 1st Day of Chemotherapy

We have great family and friends that have reached out to us in so many ways.  You are all such a blessing to us and we appreciate all of your well wishes and prayers.  Our friend Jarrod sent us this scripture this morning and it was so fitting for today.  "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day"  2 Corinthians 4:16.

Dakota & David checking in for chemo 

                              Waiting for the doctor to see us before Dakota starts treatment.
The doctor had good news for us today.  It seems that his body has been fighting the cancer and his blood count is still very good.  He even gained 2 lbs this week.  The cancer in his bone marrow was minimal and they did find other lymph nodes that were swollen but all of his internal organs looked good.  God is good, all the time. 

Waiting, waiting, waiting...lots of waiting today.  Waiting for his chemo treatment in his new best friend, the recliner.  Doesn't he look like a happy camper here?  LOL
Finally, chemo started!

His port

Dakota with his nice 24-hour fanny pack.  He will go back tomorrow to get this taken out and to get a shot.  This fancy little fanny pack will deliver the medicine known as the Red Devil...ironic. 
Out for today.  I will be going back to work tomorrow and Friday and David will be on daddy duty.  I will get the next three days.  We are very blessed to have good jobs that allow us to acquire a lot of leave.  I can't imagine doing this and having to worry about not having leave or losing our jobs.  Blessed... 

Tuesday, August 9, 2011

Day 1 - The Port and Pictures

I decided to take some pictures of Dakota and his girlfriend Sierra on Monday.

Today was what we consider day one of treatment...the dreaded port.  It wasn't as bad as Dakota had thought it would be.  The procedure was very quick with a small incision.  Dakota wanted to spend the day with Sierra and his adopted sister, Erin.  We did have to go to a chemotherapy class after and it was very informative.  Tomorrow will be the first day of chemotherapy and we will go back on Thursday and Friday.  Dakota will then have 2 weeks off and then we will start again.  Here are a few pictures of his day at the hospital.

Sunday, August 7, 2011

I have started this blog to keep family and friends updated on Dakota as he goes through his treatment for Hodgkins Lymphoma.  This is Dakota on his 20th birthday.

 Last week we met with his oncologist for the first time.  Thursday they took bone marrow and Friday he had his first PET scan to see if any of his internal organs have been affected or his bones.  The doctor's diagnosis at this point is stage 4 but we will know more on Monday or Tuesday of this week after we receive the results from his tests. The good news in all of this is that there is a 90% cure rate for this cancer.  Tuesday he will have his port put in and Wednesday he will start chemotherapy.  

I have to say that I couldn't be prouder of my son and how is handling all of this.  He definitely has my mother's gene pool when it comes to strength.  We found out about his diagnosis two weeks ago.  What is my son's first response?  "I want to go to Falls Creek."  What is a mother's first thought...too many germs, he won't sleep, he'll get really sick, he needs to see an oncologist."  All of this goes thru my head and out of my mouth.  I get off the phone with Dakota and think, how selfish am I?  He wants to grow in his relationship with God and get God answers and all we want is man's answer to his healing.  I called him back and told him that he should go.  Of course, he is 20 and really doesn't need my permission to do anything but he does honor us and our feelings.  He did go to Falls Creek last week and yes he was sick and ran a fever most of the time and was really weak.  It did take a toll on his body but it stregthened his spirit and for that I am eternally grateful. 

God blessed me with a camera last year and when I received it I prayed that God would use me and my camera to honor Him.  Who knew that I would be documenting my son's journey thru cancer treatments...God did.  I will start taking pictures this week and will look like the crazy mom in the cancer unit taking pictures.  I will post these pictures on here.  If you are squeamish or can't handle that, I completely understand and won't be offended if you don't follow us.  I know it will be hard for me to see as well but it's a growing process for all of us.  Dakota isn't scared of the sickness or losing his hair, his biggest fear is the port.  I do ask for your prayers.  I believe in the power of prayer and have seen it work in our lives many times over.  Many of you ask us if we need anything and we really don't at this time.  If we do I will let you all know.  I hope you will take this journey with us. 

The Miles Family