Miracles!!!!

Our emotions are very tender today. We feel so humble and grateful for the divine tender mercies and blessings we have received through this very difficult and trying journey. We feel that from the very beginning we have been guided and strengthened through prayer to deal with this challenge. We are so thankful for your love, support, and prayers, for our little Jeremy. We feel that those prayers have been answered and we have been granted a miracle. Yesterday Jeremy had an MRI and CT scan. We met with Dr. Spraker afterwards to discuss the results. Jeremy's tumor has shrunk to a size that is no longer measurable.  It is now stranulated and confined to the left sinus. The nasal passages are clear and there is no discrete mass and no evidence for new enhancing tumor. Contrast is showing the tumor to be dead. We asked Dr. Spraker if this means that Jeremy's cancer will be in remission at the end of chemotherapy in July. She said with these results, she considers him in remission now. She continued to say that because we have noticed his increased activity, appetite and energy over the past two weeks, this confirms that the chemicals normally released by a tumor such as this, have stopped.  (He made the full three hours at church this last week for the first time since last summer.) As he completes these last three months of chemotherapy, the tumor will continue to shrink and will become minuscule. These results are miraculous! Surgery was not an option and the "plan" was that Jeremy would have a dead tumor at the end of chemotherapy.  Though we have to finish Chemo, it seems we have the dead tumor now.

We believe this experience started with a miracle but because of the emotions and emergent nature of what was happening we did not record the beginning of it all.  So we have this record in the future to look back on, this is what happened...

This morning I have been reflecting on last August when Jeremy started snoring. He had just started Kindergarten. I was so glad that he was in afternoon kindergarten, because the snoring was interrupting his sleep (and James' since they shared a room). He seemed to be getting louder and more tired. I had heard that tonsils can cause snoring and felt that I should take him to the doctor's for a check up. The morning of September 12, 2011, I felt a strong impression that I should make a doctor's appointment for Jeremy that day. I also felt very impressed that Jeremy needed to see Dr. Gabrielsen (sometimes we will see whoever is available at Wee Care). I called to make the appointment but Dr. Gabrielsen had no appointments available for that day. So I made an appointment with him later that week. I started cleaning the house and felt troubled. I had a strong impression to call Wee Care again. It is interesting looking back. Snoring is not an emergency, yet I felt so strongly that he needed to see the doctor that day. I called Wee Care and the lady on the phone told me that Dr. Gabrielsen had a cancellation and asked if I could be there in an hour. After examining Jeremy, Dr. Gabrielsen said that Jeremy's tonsils were huge! He said it is not an emergency, but he felt like we should get it taken care of as soon as possible. He walked us to the reference desk and asked the scheduler to make Jeremy an appointment with an ENT specialist within the next couple of days. She scheduled us an appointment with Dr. Anderson.
At our first visit we saw Dr. Anderson's physician assistant. After examining Jeremy he scheduled surgery for removal of his tonsils, adenoids, and a tube to be placed in Jeremy's left ear. He said that they normally do not schedule surgery during the first visit, but felt this is an obvious case and it needs to be taken care of. Surgery was scheduled for October 5th. He also prescribed an antibiotic for Jeremy's ear infection (we did not know he had one because he did not complain of pain). During this waiting period Jeremy developed a constant runny nose and started having sleep apnea, and his nose was so congested that he could only breath through his mouth. I called the doctor's office and they changed his antibiotic and prescribed a nasal spray. We saw Dr. Anderson at Jeremy's pre op visit. He asked me if Jeremy was having any pain or fevers. I said no. He said that is unusual. He has developed an abscess behind his left tonsil, which are painful. He told me that since it was late in the afternoon and surgery was scheduled for early in the morning he would take care of the abscess at that time and also do a biopsy, but if there were any changes during the night to take Jeremy to the ER. I slept by Jeremy's bed that night.
The next morning Mike and I were waiting for Jeremy to come out of surgery and it was taking a very long time. After a while they asked us to wait in a room for the doctor. Again we waited and waited....feeling that something was not right. Dr. Anderson came to us and said "I am so sorry. It was not an abscess its a tumor. It is cancerous, malignant. We removed the left tonsil and did a biopsy on the tumor. (They left the right tonsil and adenoids. The tumor had pushed the tonsils forward making them look enlarged, the tonsils and adenoids were healthy.) I asked him "How do you know it's cancer?" He said that it was very obvious and they called a pathologist in to confirm. He told us that we were going to McKay- Dee Hospital for CT scan and x-rays and he would also get us set up with an oncologist at Primary Children's Hospital. We were shocked, confused, uncertain, and afraid of what this might mean. Our hearts were in anguish.
Jeremy spent Wednesday night at McKay Dee Hospital, a night home (I slept by him) and on Friday morning we headed up to Primary Children's Hospital. After CT, MRI, x-rays, and several other procedures. Jeremy was admitted and stayed for 9 days. The tumor was growing so quickly, it had closed off the nasal cavity and the left side of his mouth. Jeremy could only breath through a small opening on the right side. With the left tonsil removed we could easily see his tumor. He ended up spending a couple of nights in PICU because of his sleep apnea.
Jeremy was diagnosed with Rhabdomyo Sarcoma, intermediate risk (because of location), stage 3. Chemotherapy was started on Monday, October 10, 2011. We were told that we were very "fortunate" to have taken him in to the doctor's office when we did. It was a very fast growing and aggressive cancer and the location of the tumor was compromising his breathing. If we had waited only 1-2 more weeks, it would of spread and he would have been stage 4 or we would of had an emergency situation with his breathing entirely compromised. We feel this was more than "fortunate", it was a miracle!

"For I am God, and mine arm is not shortened; and I will show miracles, signs, and wonders, unto all those who believe on my name.  And whoso shall ask it in my name in faith, they shall cast out devils; they shall heal the sick; they shall cause the blind to receive their sight, and the deaf to hear, and the dumb to speak, and the lame to walk. And the time speedily cometh that great things are to be shown forth unto the children of men;" D&C 35: 8-10

Week 28!

Jeremy had the VAC chemo last Tuesday. My heart aches to see him suffer with nausea, vomiting, and fevers. We adjusted his nausea medicine and he did a little bit better. On the next VAC chemo, we are going to start his nausea medicine a few hours before chemo is administered so that it is in his system and see if this will help. We can also try a steroid, but he is already on so much medication I hesitate to add another one. Jeremy was on a steroid when he was first diagnosed. It made him very emotional and irritable (a common side effect). It seems like we would be trading one problem for another. On the bright side, Jeremy seems to recover quickly, by late Thursday afternoon he was outside riding his bike. We feel that he is being very blessed!

We are trying to spend time each day helping Jeremy with reading, writing, and his physical therapy exercises. We are thinking about skipping kindergarten and sending him to 1st grade. We are praying to know what would be best for Jeremy. I spoke with the principal and he suggested we enroll Jeremy in summer school. We are considering it. Chemotherapy is scheduled to be done in July. Jeremy has a MRI and CT on Tuesday, April 24th. We feel that he is doing well and expect no surprises, but we still feel anxious to see the results! We have an appointment with Dr. Spraker right after to talk about the scans. We will post the results next week.

Megan taught Jeremy how to tie his shoes.

I did it!

Now for the other shoe! 

I have a greater appreciation for these simple, normal childhood moments!

A Week of Dinosaurs!

We have been enjoying a "break" from chemo.  Jeremy usually has chemo every week, but in his chemo plan there are a few scheduled breaks. We sure enjoy these little breaks! Jeremy's next VAC chemo is on Tuesday, April 17th.

We love this beautiful Spring weather! Jeremy is looking for potato bugs in the garden.

Found one!

Mike had work in Vernal and Price last week. Since the kids were out of school for Spring break and Jeremy did not have chemo, we loaded up the camping trailer and went with him. Although Jeremy had a break from chemo, there are no breaks from cancer. We packed Jeremy's feeding pump, Neupogen shots, and mapped out the hospitals along the way, in case we had an emergency. 

James, Ireland, Jake, and Jeremy looking at the fish outside of the Dinosaur Museum.

This is a really fun museum. 

Towards the end Jeremy was getting tired. He laid down on this stone bench and closed his eyes. I asked him if he was getting tired. He did not want to admit that he was, and said "I am pretending to be a Utah Raptor (dinosaur) fossil". 

It is nice to have big brothers to carry you around! When Jeremy got tired of walking Jake and James would offer to carry him on their backs.

We went on a really fun hike looking for real dinosaur tracks by Red Fleet Lake. 

We went slow and took many breaks but it was well worth it.

Here is a real dinosaur foot print in the rock. 

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Jeremy was so excited that he learned how to skip rocks!

 The boys wanted to go fishing. Jake set up Jeremy's fishing pole and helped him fish. Mike had to work during the day while the kids and I vacationed. We wished that he could of joined us, but we were glad the kids had this opportunity to spend time together. We had a great trip! 

Jeremy at the "Make a Wish" Easter Egg Hunt!

Looking for eggs.

The Easter Egg Hunt was at the Dinosaur Museum in Ogden. 

Jeremy got a dinosaur painted on his face. 

Megan was home from BYU for the weekend and was able to come with us. All of the kids have been so supportive and helpful caring for Jeremy through his cancer. He has been blessed with wonderful big brothers and sisters!

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.