Make A Wish!

Last week was an emotional week for me. Jeremy was doing great, the best he has done since he was diagnosed. I was falling apart. I was constantly on the verge of tears. I have been so focused on caring for Jeremy and "keeping it together", that I have not had time or energy to deal with my emotions. While he was doing well, all my buried emotions surfaced. A friend told me that I needed to complete the grieving process and I needed to cry and let it all out. I had a week of healthy crying and feel much better! I want to thank those whose shoulders I cried on. It is great to have such wonderful support!

While Jeremy was waiting for chemo, he had the opportunity to paint a ceiling tile for one of the operating rooms. He painted a picture of "Mom" fishing. Which is funny, since I don't fish! He started out painting a picture of ice fishing with green snow. He changed his mind and said it is now "regular" fishing with a sun. It is a great representation of our Spring weather! 

Monday night Jeremy and I were reading bedtime stories. When I said "Good night", he clung to me and hugged me real tight. I asked him what was wrong. When he did not answer, I asked him if it was because he had to stay over night at the hospital for chemo. He nodded his head yes. Jeremy will talk with me about how he is feeling and although he does not like chemo or staying at the hospital overnight, he cooperates, is patient, and meekly bears it. He knows that he has to do it to cure the cancer. I understand how he feels. It is getting more difficult each time. We really had a hard time managing his nausea last night. He was on four different nausea medication and he was still throwing up or dry heaving all night and morning. He also had his usual low grade fever (he has one almost every VAC chemo). Even though he is so sick we still have to wake him up every two hours to go to the bathroom (because of the toxicity of the Cytoxan, he is pumped with IV fluids to flush the chemo out of his bladder). Through it all he does not complain. My mom stopped by after work and we played games with Jeremy while his chemo drugs were being administered through his IV. He was laughing and having so much fun "winning" us at the matching game. I had the pink basin close by waiting for the inevitable. Sure enough, after the Cytoxan was administered Jeremy went from laughing and playing to sick and throwing up. My mom said that she cried all the way home and could not stop thinking about Jeremy and what he has to endure. 

Dr. Spraker told us that Jeremy's cancer qualifies for Make A Wish. The hospital notified Make A Wish about Jeremy.  A few weeks ago Jeremy received a special package in the mail. It was an invitation for Jeremy to come to the Wishing Castle and make a wish, with the invitation was a key. He was instructed to bring the key to unlock the door to the special wishing place. Last Saturday we went to the Make A Wish Castle for Jeremy to request his wish.

When we arrived, there was a special sign that read "Welcome to a Wishing Place Jeremy! He was so excited to see his name on the sign! Jeremy is holding up his special key. 

Playing a "getting to know you" game.

Jeremy's key opened up the door to the Wishing Place.

Jeremy submitting his wish. He was instructed to make a wish #1 and a wish #2. His first wish is to fly in an airplane and meet Mickey Mouse in Disney World. His second wish is a remote control car. He did get a remote control car for Christmas....so the family is  hoping for the 1st wish!

Jeremy placing his wish on top of the cone, making his wish official.  Now we wait two to three weeks to see if Jeremy's wish has been granted. 

Our family's wish for Jeremy is for him to be cancer free by his 6th birthday! 

Trip to Moab

Chemo went well this week. Jeremy is doing well. His blood count is good. The physical therapist examined him while at clinic. He is making progress. We have exercises that we do with him at home and he is gaining strength in his left shoulder. The physical therapist gave us some exercises to do at home to help strengthen his legs and improve the foot drop. She will check his progress on Tuesday, before chemo.

We had a fun time in Moab. It is so pretty there, well worth the long drive! There was a school play ground by the finish line. The kids were able to play while we watched for Mike finish the half marathon. It was a short trip, but a nice break. The kids also enjoyed swimming at the hotel. We wanted to go hiking, but the weather turned into rain, cold, and wind. We picked up Megan from BYU on the way and dropped her off on the way back. It was nice that she was able to come with us. When Jeremy was tired, we took turns carrying him. He slept most of the ride back home. He was exhausted, but happy.

Week 23 of Chemo

Jeremy recovered rather quickly from his VAC chemo last week. He had a difficult time the first night, but by Thursday he was running around playing. We are so pleased with how well Jeremy has been doing! We wonder if the sunshine and warmer temperatures are responsible for his quick recovery, burst of energy, and improved appetite.  

Although Jeremy is spending more time outside and is doing more, he still tires easily and needs plenty of rest. After riding his bike on Monday, he fell asleep on the floor, exhausted!

We are also discovering some new challenges with the warmer weather. After Jeremy's long nap on Monday, he wanted to go back outside to play. While running he tripped and fell on the pavement. He trips when he runs, a common and reversible nerve side effect from the Vincristine. In Clinic yesterday, they tested Jeremy's reflexes and coordination. When the doctor tapped Jeremy's knees with the rubber mallet, his  legs did not react and kick. This should be temporary and his reflexes should return after he completes chemo. Jeremy will be doing some physical therapy to help with this problem. He also is doing some physical therapy for his left shoulder. It droops, a side effect from when the radiation hit one of  the cranial nerves (located in the brain). This nerve effects the function of the trapezoid muscle along the neck and down to the shoulder. 

We also talked with Dr. Spraker about going down to Moab this weekend. Mike is running the Moab Half Marathon and we thought this would be a fun family trip. Dr. Spaker informed us that her and her husband are also running the Moab Half. She gave us approval along with advice and instructions. We are praying for  no fevers, infections, or injuries, good blood count, and plenty of sunshine. I told Jeremy that we need to be extra careful not to get sunburned. His medication makes him sun sensitive and being bald does not help! 

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.