Happy Halloween!

We hope that everyone had a fun Halloween! We had a great Halloween. Grandma Stapley made Jeremy's bat costume and Ireland's Dorthy dress. We are thankful for her help this year! James put his costume together from the "costume box" and is dressed as a Night Rider from Lord of the Rings. I think everyone's costume turned out great!

Jeremy had fun Trick or Treating tonight. He was able to visit about eight houses, and then he was ready to come home. He tires easily, but it was great that he had the energy to do that much! Jeremy had fun joining the Francom and Fox girls while Trick or Treating. 

It was nice of Celeste to invite Ireland to go Trick or Treating. Ireland was happy  to be able to stay out longer.

Tomorrow morning we head up to the Huntsman Hospital for Jeremy's radiation and then over to Primary's for his VAC chemotherapy, we will be staying the night. The next six weeks of doing radiation every day and chemo each week is going to be tough! I am thankful for this past weekend and that Jeremy had a fun Halloween. A tender mercy and blessing! Please keep us in your prayers! Love to you all!

Fun Weekend!

We had a great weekend! Jeremy is doing well. Aunt Jana and her kids came up on Friday. The cousins had  a great time together! They laughed and played. Jeremy would take little "rests" on the couch, but he mostly played. It was great to watch! The kids carved their jack-o-lanterns. Grandpa and Grandma Stapley and cousin Emma came up for a visit (in the picture Emma is helping Ireland with her pumpkin). Megan also came home for the weekend. Mike, Megan, James and Ireland participated in the Daxton Wilde 5K run to benefit children battling cancer. Jacob had to work and Jeremy slept in until 11:00 am, so the three of us were not able to join them. James came in first place for his age division and Ireland came in second place overall and first place out of the girls for her age division. The Wilde family gave us a copy of Daxton's book "I'm a Superhero". He was age four at the time he was diagnosed with brain cancer and illustrated and wrote his book. I read the book to Jeremy at bedtime. We smiled, laughed, and "I" cried, we could relate to Daxton's story. Jeremy liked reading about a boy his age with cancer. I am thankful for the Wilde family for sharing their story. We are so thankful for our family and friends who have helped us carry this burden through their love, support, and prayers. Our hearts are touched by their generosity and kindness. We are also thankful for the sweet spirit of comfort and peace we feel as we pray and know that we are being watched over by a loving Heavenly Father and also by his son Jesus Christ.

                           

Mike, Megan, Jeremy, Ireland, and James

Tonight Jeremy had some special visitors. Brad Harris organized a special surprise for Jeremy. He enlisted the boy scouts in troop 540 and a few other special young men. It looks like Jeremy and James are not the only ones sporting a new haircut! What a good looking group of young men!

Jeremy was being shy....but his smile shows his appreciation! Brad along with the Boy Scout Troop 540 awarded Jeremy a "Medal For Courage And Valor" in his fight against cancer. 

Here is the certificate and medal. I told these valiant young men, that they may be awarding Jeremy an award for courage, but each of them deserves an award for compassion, charity, and Christ like service. We are so touched by their thoughtfulness and support. Jeremy can wear his new medal along with his courage necklace when he goes to the hospital for his chemo and radiation treatments. We will definitely frame his certificate to display in his room. 

A special thank you to Brad, Bryant, Nathan, Jadon, Dylan, Ryan, Kevin, Nathan W., Will, James, Amber, and Angie! We are so appreciative to each of you for your love and support! Thank you for your visit tonight! It was definitely a morale booster!

Third Week of Chemo

Chemo went well today. During his doctor visit and treatment, Jeremy played with play dough, decorated a bat that was cut out of a piece of x-ray film, and added three more beads to his "courage necklace". I love how fun and play is mixed into each doctor visit. At the time Jeremy was diagnosed with cancer the tumor had enclosed on the left side of his mouth. Today was the first time that Dr. Spraker was able to see an opening on the left side. She excitedly showed me and was very happy with the progress Jeremy is making on chemo. We are truly being blessed! We really like Dr. Spraker, she is also a blessing! She sincerely cares and spends so much time with us at each visit.

The chemo treatment makes Jeremy very sleepy and easily fatigued. His ANC number is going back up. We are hoping his ANC number will keep going up and he will get a spurt of energy for Halloween.

Long Day...

Our appointment at the Huntsman's was 7:15 am today. The day started early and it has been a long day. I was helping Jeremy wash and comb his hair this morning and lots of hair started falling out. I was not expecting hair loss so soon. After Jeremy's CT scan, Dr. Poppe talked with us about the side effects of radiation. Mike and I left the visit feeling emotional and deeply concerned of the possible long term effects. Jeremy is at high risk for some permanent side effects because of the location of the radiation and because he is young and still growing. Some of the concerns are hearing loss in his left ear, loss of sight in his left eye, the bone growth in the left side of his face will be slowed and under developed, and radiation could overall affect his growth rate. There is also a concern of Secondary Cancer, that radiation can cause many years later after you have finished treatment. Dr. Poppe said that Secondary Cancer does not happen very often...so I guess we will try not to worry about it. There are also short term side effects while Jeremy is doing radiation. The side effects are similar to the chemo side effects: nausea, weight loss, sores through out his GI track, fatigue, hair loss, etc. the list goes on! The time has come when Jeremy will do radiation and chemo together and the next 6 weeks feel overwhelming. He has to suffer so much and risk permanent side effects in order to be one of the 80% cured. Today I felt that I was in mourning. Mourning the loss of my healthy boy. Preparing myself for the months ahead when he will be so weak and sick, wishing I could take his pain away. 

Radiation will start on November 1st, that same day he will be admitted at Primary's for his VAC chemo treatment. My prayers are growing with intensity, that Jeremy will not have to suffer greatly from the side effects. I know that Heavenly Father is watching over Jeremy and we have already witnessed a great miracle, finding the tumor and starting treatment before the cancer spread throughout his system. We are also witnessing daily tender mercies and blessings from above. Dr. Spraker said that some tumors "melt" away with chemo, but not the Rabdo cancerous tumor that Jeremy has, it is very aggressive and takes time to see results. Jeremy's tumor is shrinking faster than expected. Each night his breathing improves. He can breath through the right side of his nose! Yes the chemo is working, but I believe it is working "faster" because of all the prayers for Jeremy. I feel that there are more miracles coming. I hope they are the miracles that my heart desires....but if not, I pray for the strength and faith to accept the outcome.  

After our meeting Jeremy fell asleep on the way home. We tucked him in bed and Mike stayed with him while I went down to the school. I talked with his teacher and the principal. We decided to take Jeremy out of school for the year. He does not have the energy or strength to attend. We also feel it is too much of a risk exposing him to germs. We talked with Jeremy about starting Kindergarten over next year. He liked that plan. He will still be recovering from chemo this time next year. It will take a long time for him to recover. He could ease back into a half a day of Kindergarten easier than a full day of 1st grade. His birthday is in mid Aug. He made the Kindergarten deadline by two weeks. He will still be in his same age group next year. 

When I came home after talking with the school, Jeremy woke up. He had hair all over his pillow that had fallen out while he was sleeping. He was complaining that his hair got into his mouth. Mike and I talked with Jeremy about getting a "buzz" hair cut. Jeremy was willing. After I "buzzed" all his hair off, we praised how cute he is. He looked in the mirror and said "I like it." We took a picture of his new haircut with the kids when they came home from school. Afterwards Jeremy asked James if he would cut all his hair off and be bald too.  James rose to the occasion and showed his love and support by being "bald too". I am secretly glad he did not ask me to go bald! I think that the rest of the family is relieved as well! 

Jake, Jeremy, Ireland, and James

Jeremy said "Now there are two bald kids in our family!"

Thank You Primary Friends!!!

We want to thank the primary for sending Jeremy the DVD of the children saying hello and singing to him, and also the recording of the primary program. He loved it! He also loved the pictures that the primary children drew for him.  It was fun to see Jeremy's happy reaction and watch him smile! That was so thoughtful and kind. Thank you!

Planning meeting tomorrow

Yesterday was a great day! Jeremy enjoyed the sunshine and some time outside. James and his friends cheered him on while he shot some baskets. Jeremy also enjoyed some visitors. The day must of wore him out, because today he is very tired. I am glad he had a fun day yesterday. Today his ANC count is down to 200, so we will have to be very careful for the next few days.

Tomorrow morning we are heading up to the Huntsman's for a planning meeting to start radiation. Jeremy will be under anesthesia so that they can make his mask and he will have another CT scan. It will be interesting to see how much the tumor has shrunk. Tomorrow will be informative and we will learn more about the process of radiation therapy.

I hope that I will not sound repetitive when I express my gratitude. I hope that you will feel my sincerity. I can not say enough how much we appreciate all the kind acts, thoughtfulness, love, and prayers.

I am amazed at how much Jeremy is sleeping! Yesterday, he woke up around 10:00 am. He ate a little breakfast and was ready to go back to bed. He slept until 4:00 pm. We check on him constantly! When he woke up he was hungry and wanted "racaroni and cheese" (he has pronounced it this way for as long as he could talk!). He ate half the prepared box himself! All that sleeping must of worked up an appetite! We are thankful that he is eating well this week. He has already lost 5 lbs (which is a lot for someone his size). He even asked in one of his nightly prayers if he could have a corn dog! He said "and please can I have a corn dog tomorrow".  So I made an early morning trip to the store and bought a box of frozen corn dogs. When Jeremy woke up, his request for breakfast was a corn dog!

While Jeremy slept and Mike was home, I took advantage of the situation and spent some much needed time with Jake, James, and Ireland. It takes conscience balancing, but I want all my kids to know that I love them and their needs are important too. Ireland and I went shopping for long pants and a few other needed items. It was great to spend some individual time with her and I could tell she needed it too. We also went and got their flu shot. Only a little murmur until Jake being the leader reminded them that this was for Jeremy. The kids have been wonderful helping us care for Jeremy! Megan is very helpful when she comes home to visit. We have really pulled together as a family and everyone is contributing to get our daily tasks done. Another reason to be thankful!

Good News!

Today has been a great day! Jeremy has literally slept the last 2 1/2 days. This afternoon he had a little spurt of energy. We went outside and enjoyed the beautiful fall day. Jeremy noticed the leaves are starting to fall off of the trees. The sunshine felt so nice! He tires easily and our visits outside are short, but very therapeutic!

Jeremy shared some exciting news with us today! He came to me excitedly and said "Mom, I can breath through my nose!" I told him how happy I was and asked him to show me. I can hear air through his right nostril, his left is still blocked. He has not been able to breath through his nose for over a month. We are so happy! Although Jeremy suffers from the sides effects of the chemo therapy, the chemo is helping shrink the tumor and we are seeing progress! (The tumor is in his nasopharyngeal. It is the size of his fist, no real shape, just squeezes in the spaces.)  What a blessing for him to be able to breath through part of his nose! Each day we see little miracles. Our hearts are full of gratitude and feel that our prayers are being answered. We want to thank each of you, who are also praying for Jeremy.

Jeremy loved this poster that his kindergarten class made for him!  I tried to take another picture of Jeremy when he was awake, but he was not in the mood for a picture today.  He has mostly slept since his last chemo treatment.

We love all the cute jack-o-lantern faces!  Thank you Mrs. Mumford's class!

Jeremy's treatment plan

Many have asked what Jeremy's treatment plan is so here it is for those who are interested.

Chemo is a 3 week cycle.  Jeremy's chemo day is Tuesday. He will receive chemo for 42 weeks.

The first week he receives three chemo medications and we call it the VAC (Vincristine, Actinomycin-D, Cyclophosphamide) week.  All chemo meds are given through an IV.  Jeremy has a "port" that was surgically placed on his chest for easy access for IV, medications, and blood draws. On VAC weeks Jeremy is hospitalized for 24 hours at Primary Children's Hospital.  This week is sever nausea (there is medication to help with this, and it did help Jeremy), loss of appetite and tired.

The second week Jeremy receives one chemo med.(Vincristine)  This is done at the Oncology Clinic at Primary's and is out patient.  The second week his ANC (blood test that shows Jeremy's ability to fight infection) count will be the lowest and he will be extremely tired.  His ANC count was 400 yesterday.  On chemo 500 is best.  A normal ANC count is about 3,000-5,000.  This is why it is so very important that we protect Jeremy from germs and avoid contact with individuals who are sick.

The third week Jeremy receives Vincristine, out patient.  This week his body has had a chance to produce more white blood cells and his ANC count will go up a little.  He will also start to feel less tired.  Just when he starts to feel a little better, it will be time to start the cycle again with the VAC meds.

Radiation will start sometime in November.  We will make the daily drive to the Huntsman Center for radiation Mon-Fri for six weeks.  Jeremy will continue his chemo while on radiation.

Second Week of Chemo

Second week of chemo.  Jeremy is showing Ireland the picture he painted while he was getting his chemo treatment.  The chemo medicine is given through an IV.  Jeremy also received a "Courage Necklace" (Ireland is looking at it). It is a string of beads that spell out his name.  Each time he comes to the hospital he can collect a different bead for each experience he has. The string of beads represent his courage and personal journey through cancer treatment.  As you can see he has already collected a lot of beads! 

First few days home

The first day home, we got to work setting up the house to better accommodate Jeremy and his needs.  We had a family council earlier to decide the best way to do this. Jeremy shared a bedroom with James downstairs.  We talked with the kids about how Jeremy needs to be close to Dad and Mom and close to a bathroom.  We only have two bedrooms upstairs and no bathroom downstairs.  We came up with the plan for Ireland to share a bedroom with Megan downstairs and Jeremy would use Ireland's room upstairs.  This was a huge sacrifice for both girls. We are so proud of our girls for being so selfless and their willingness to sacrifice their comfort in order to help Jeremy.  The whole family got to work.  Jeremy watched us while resting in a chair.  We moved the furniture out, wiped everything down with Clorox wipes, and Mike painted the room.  Now Jeremy has a nice room that is close to Dad and Mom and a bathroom.  

Cousin Josh visits Jeremy in his "new upstairs" bedroom.

Sophie taking care of Jeremy, while he rests.

Pictures from the hospital

We want to thank everyone for their kindness and thoughtfulness!  We are overwhelmed with appreciation and gratitude for the wonderful family and friend support! The last 10 days have been unbelievably stressful and long.  We have learned to count our blessings and treasure every happy moment.  Here are a few...

  Jeremy has loved all of his presents.  Megan came up from BYU to visit Jeremy.  She made a comment about all of the gifts that he has received.  Jeremy looked around at all of his gifts, cards, and balloons, and said out loud to himself, very thoughtfully, "Everyone sure loves me!"

Bishop and Brenda Berlin brought Jeremy a stuffed animal dog that looks like our dog Sophie.  This was a great comfort for Jeremy.  He became very attached to his new pet and named him Blacky.

The first two days of chemo Jeremy did not eat or drink anything.  He had no appetite.  The nurses said this is normal.  He did have an IV for fluids. By the third day he started to "sample" foods.  We had to chuckle over one of his requests.  He asked if he could have one pepperoni.  We called in his order, and they delivered him a small bowl of pepperoni.  Jeremy put the one pepperoni between two pieces of cheese and made a little sandwich.  That was dinner. The fourth day was an eating day!  Jeremy had a huge appetite!  He ate pudding for breakfast, pizza for lunch, and pancakes for dinner.  He also ate several snacks during the day.  The philosophy with kids on chemo treatment is when they are ready to eat, let them eat whatever sounds good.  They need to stock up for the next round of chemo.  The chemo drugs not only affect their appetite but also their taste buds.  Some foods that were Jeremy's favorite, do not taste good to him anymore.

Jeremy loved painting in the Play Room at Primary Children's Hospital.  This hospital is amazing!  The hospital staff understand children and try to make their stay as comfortable as possible.

Jeremy playing in the garden.  He tires easily.  After about 10 minutes he was ready to go back to his room.  It was nice to take a little break from his room and get some sunshine.  With each session of chemo and radiation he will become more tired and there are side affects to deal with.  We have learned very quickly to treasure these happy moments.

I think that Jeremy realizes that we are in this together.  He "watches" out for me. Mike would come up during the day and stay with Jeremy so I could shower or take a little nap.  One day while Mike was with Jeremy, it was during lunch time.  Jeremy was concerned that I had missed lunch, and so he saved me some of his pizza.  Another time Jeremy was watching Curious George, I closed my eyes for a minute to rest and fell asleep.  I woke up with Jeremy quietly watching me and smiling, he said "you fell asleep".  He didn't try to wake me, he just watched his show until I woke up.  My sister and her husband came to visit us and brought M&M's.  It looked like he was done and I offered to throw away the wrapper.  Jeremy said no, and kept holding onto the wrapper.  After Jana and Cory left, Jeremy said "Here mom I saved you and me the last two M&M's".  He is so sweet and is often sharing treats with his dad, brothers, and sisters.  

Box from Chicago

Jeremy's Aunt Angie, and his cousins Lauren, Harrison and Griffin, packed up a special parcel which he got to open in the hospital. It was a hit!

Jeremy opens Francom's present

While in the hospital, Brynli, Olivia, and Brielle sent Jeremy a present.  He was very excited!

Coming Home

Last night we brought Jeremy home. He will be going back constantly over the next year, but this was his first few minutes in the car, away from the hospital.