A Brother's Perspective

Mike and I were asked to speak at Church today. Because of our recent hospital stay, exhaustion, and Jeremy's zero ANC count, I stayed home to take care of him. Jacob, our 15 year old son, was willing to speak in my place. I love the talk that Jacob wrote. He wrote from his heart and shared his feelings and perspective about Jeremy's cancer. With his permission, I am posting it to our blog.

When Jeremy was three years old he came fishing with me my dad and Ireland at lost creek. It was a hot sunny day but we got there early in the day so it was cool to begin with. We were in our little fishing boat and we slowly trolled around the lake, I caught the first fish so we all changed our lures to the same pattern that I was using so we could all catch fish. We got Jeremy’s pole set up first so we decided to troll with his pole while we set up the others. Immediately he began to roll in his line, saying “I got one I got one” while humming the song from bass masters 2000 which is a video game he liked to play. We all started to tell him that it was just the drag that the water makes while trolling, so he stopped reeling in. But then he started reeling in again, so we decided just let him reel in. About one minute later he pulls the last of his line in the boat, and there was a nice trout on the lure. He was right that he actually caught one, and he caught three more afterwards.

I love to be outside all the time, I mostly fish, hunt camp, and hike. I love to ski and snowshoe, I just love to be in the mountains and fields. I know that Heavenly Father has blessed me to be able to live in such a great area where all my favorite activities are close by and easy to get to. I know that he knew that I loved the mountains and fields so much that he sent me to a family that lived here.

When I first found out about Jeremy I felt very sad and scared. I had an idea of what kind of treatment he would be receiving from other cancer patients that I had seen from school. I was sad because I knew that he would change and that we wouldn’t get to do some of our activities together for the next year or so. Also we had talked about how if Jeremy wants me to I will get the privilege of being the one who baptizes him when he turns eight. I liked having the idea that I would get the chance if he wanted me to. But when I learned about his tumor I thought that I might not get the chance to baptize him or see him at that age.

 I am going to read 1^st Samuel 16: 7 “But the lord said unto Samuel, look not on his countenance. Or the height of his stature; because I have refused him: for the lord seeth not as man seeth; for man looketh on the outward appearence, but the lord looketh upon the heart.”

I was seeing Jeremy with worldly eyes and saw him not as strong as Heavenly Father saw him. But now I see Jeremy as a very strong 5 year-old, I see it most often when something like his port needs to be accessed for blood. When he gets his port accessed we put on a numbing cream on the skin over his port and then the home health nurse sticks a big fat needle through his skin to reach his port. The location his port is at makes him need to lift his shirt up or pull the collar down, pulling the collar down is what he prefers. He does things like his port without even crying or fighting, because he knows that this is what needs to be done. Heavenly father knew Jeremy better than anyone on this earth that he knew Jeremy would be able to be calm and have the courage to get through cancer. I know that just like Jeremy Heavenly Father has not forgotten me or anyone else on this earth.

The first thing that Jeremy wants to do this summer when he is better is to go fishing as much as possible. We have planned to do lots of fishing trips when he is better and I can’t wait to do them with him. I know that this church is true, that our prophet tells us the truth, and our Heavenly Father will never forget us no matter what happens to us. I say these things in the name of Jesus Christ. Amen.  

An Unplanned return to the hospital

Friday morning, Jeremy said his G tube was hurting and when Lynnette looked at it she noticed it was red all the way around and started to feel warm.  Calling the clinic she learned just what she thought, that he needed to go in to be checked out and likely stay the night.  It turned out to be an infection.  Fortunately we caught it early enough, and he responded so quickly to the antibiotic, that Jeremy never really got a fever and was able to come back home after only 24 hours.  The bad news though is that the infection used up all the rest of his neutraphils so his ANC is zero.  We are starting the neupogen shots again and are runing antibiotics through his G tube and through his port.  Until his ANC count comes up, we moved his visit level to Red.  He seems to be feeling ok right now, and is sleeping well, but with a cough starting he is very vulnerable.

19th Week of Chemo

We arrived at the hospital at noon on Valentine's Day. Jeremy received a few Valentine gift bags that were donated to the hospital. Child Life and volunteers delivered the bags, wishing Jeremy a Happy Valentine's Day. I am continually amazed by the generosity of others.

Jeremy does not like to get into the hospital bed until he is too sick or too tired to stay up in the chair. We usually play games, read stories, or watch a movie while we wait for chemo to start (which is a few hours of prep work) and be administered (about six hours to run the chemo through his port). Shortly after we arrive, the nurse runs IV fluids through Jeremy's port. After he is well hydrated the nurse calls the pharmacy and they prepare his chemo medicine. While we were waiting for the pharmacy to prepare and deliver his chemo medicine, Jeremy started throwing up. The nurse said this is common. Children can start to feel anxious or mentally associate their past experiences of being sick with chemo. This last chemo was hard on him. He was up all night throwing up. The nurse gave him some additional medication for nausea, and by mid morning he was doing better. We were able to come home late Wednesday afternoon. The first night home we gave him IV fluids in his port. We set the alarm clock so we could stay on top of his nausea medicine through the night. By Thursday night he was doing much better, so we started his formula feedings at half rate.  

Jeremy likes to sit in this chair each morning as he waits for his G-tube feeding to finish. He watches his brothers and sister get ready for school and talks with them while they eat breakfast. Since there was no school on Friday, the kids slept in. Jeremy fell back to sleep with a quiet house! 

Although the beginning of the week was a challenge, the week ended good. By Saturday, Jeremy was doing very well. We had a nice lunch with Aunt Angie visiting from Chicago and Uncle Dave and cousin Cade also came over. Later that evening we attended the Stars on Ice. We joined HopeKids an organization that provides monthly activities for children with life threatening illnesses. This was the first activity that we attended. We had a really fun time. The Stars on Ice program was centered around the 10th year anniversary of the 2002Winter Olympics. We were pleased to see Mitt Romney and hear his short speech. It was fun to watch past Olympians skate on the ice. Jeremy was very tired by the end of the evening and he fell asleep on the way home. It was a good day! 

A Good Night!

Last night was the first good night sleep we have had in a long time! It felt so good! I actually do not remember the last good night...probably before Jeremy started snoring and having sleep apnea! The hospital suggested that we set up Jeremy's feedings through his G-tube to run during the night so that during the daytime he is not tied to his feeding pole and he will be able to move around freely. We feel this is the best option for Jeremy. He usually has an hour left of his feedings when he wakes up in the morning. He is pretty good and patient dragging his pole around the house waiting for his feeding to end. The only draw back is that he is being pumped with fluids all night and he gets up every couple of hours to go to the bathroom. Mike and I take turns each night helping him with his pole and getting him settled back into his bed. Last night Jeremy did not wake up until 4:30 am. He must of been very tired. It felt so nice to sleep for six hours straight! It is a simple reminder of how much the Lord is strengthening and blessing us to be able to handle this challenge. 

Jeremy is doing well, his blood counts are stabilizing and we were able to stop the Neupogen shots. Jeremy's next VAC chemo hospital stay is on Tuesday. We will give an update when we return home from the hospital. 

Tired of Being Sick

Jeremy has been able to enjoy some therapeutic sunshine and fresh air this week. The warmth of the sun is very healing even if the air is cold. It has been such a blessing to have more sunshine than usual this year. We bundle Jeremy up before going out. He will usually play for about thirty minutes to and hour, by the time he is ready to come in, he is exhausted! He will cuddle up on the couch and we will wrap his blanket around him with a heated up rice bag and he will fall asleep. I have decided that children fight being sick. After a while they are tired of being inside and want to be out running and playing. We are trying to find the balance. Jeremy will sometimes overdue it and make himself sick. A few days ago he did three somersaults across the floor and then stood by the sink. I asked him if he was alright, and he said, "I feel sick". Although Jeremy has more energy to run and play, we still have to be careful and make sure he doesn't overdue it and gets enough rest. A few days ago Jeremy made the comment, "I hate being sick".

Jeremy still does not have an appetite. The chemo makes food taste "yucky". He is also getting sensitive to smells. I was making dinner and Jeremy said "It smells like the zoo, where the monkeys live". The rest of us thought it smelled good...I have never had the aroma from my cooking described that way before! We are so thankful for formula feedings through his G-tube! He is gaining weight and his cheeks are filling in.

Jeremy has his blood drawn every Monday and Thursday. His red blood count is stabilizing, but his white blood count and ANC is dropping. We have been giving him the Neupogen shots since last Thursday and will continue to give them to him through the weekend until we see what his count is on Monday. His blood count can change very quickly in just a few days. We have to continually be careful exposing him to germs. We feel very blessed that Jeremy has not been sick (other than chemo sick) this winter.