Jeremy's 6th Birthday!

Jeremy really wanted to be finished with chemotherapy by his 6th birthday. He made it! On Jeremy's birthday, August 13th, we had a big family party celebrating his 6th birthday and end of chemotherapy. It was so special to celebrate this day with grandparents, uncles, aunts, and cousins.

Jeremy opening his birthday gifts.

Jeremy playing with cousins, Josh, Harrison, and Carter.

Cousins lining up to do the pinata. Cousin Jane first in line.

Anxiously waiting while Josh takes his turn!

Jeremy giving it a try!

                                     

Having so much fun!

 

Grandma Stapley taking pictures of the grandchildren.

 

Giving Grandma Russell a goodbye hug!

Uncle Brandon always joking with Jeremy

Grandpa and Grandma Aldrich

Blowing out the candles.

Yum! Chocolate cake, Jeremy's favorite. 

Grandpa Stapley serving the ice cream. 

First Grade!

Jeremy recovered well from his surgery and was ready to start school last Tuesday. Jeremy is loving 1st grade, and especially likes his teacher Mrs. Graham. She is very understanding and told me that she would call me if Jeremy is having an difficulties at school. I am also volunteering each week in his class, and will be able to watch closely how he is doing. Each day he comes home exhausted, but happy and excited about school. He has no energy after school. We are getting him to bed early, but the mornings are hard for him. Each morning he will wake up and say "I am too tired to go to school today". I will reply "That is o.k., you can go when you are ready". After breakfast he will say "Just tricking! I am going to school". He is tired, but he does not want to miss out on the fun activities at school. It is taking time, but he is getting stronger and his health will improve. He made it through the first week of school!

In the garden at Primary Children's Hospital, just before Jeremy's surgery to remove his port and G-tube.

Surgery Today!

Jeremy is having surgery today to have his port and G-tube removed. We are leaving in a few minutes. We were glad that he will have this done before school starts. It is a blessing that school starts later this year, not until September 4th. This extra time has been great for Jeremy. I think that he will be ready for school next week. He is very excited and I am a little nervous!

Jeremy lost his first tooth last Saturday!

End of Chemo Evaluation Scans

We have been at the hospital the last two days for Jeremy's scans. It is exhausting! The sedation made Jeremy very sick and his blood pressure was low. It was a long day. Jeremy's scans look good. There is some scaring in his left sinus from the radiation and also remains from the tumor. There was a marking that showed up on the bone scan on his sacrum (tail bone). Dr. Spraker said it is nothing to worry about, but ordered an x ray to be safe. She said that we could do the x ray when he comes in to have his port and G-tube removed in about two-three weeks. He is also going to have a hearing test, hopefully before school starts. The radiation may have caused some permanent hearing loss in his left ear. Jeremy's ANC is at a normal range, but he is still vulnerable and at a higher risk to sickness and infections and will be for many months. He will continue taking an antibiotic for the next three months to help him with this.We have started weaning him off his G-tube and it is definitely a challenge! Children have strong memories of bad food experiences. Unfortunately chemo provided many bad food experiences for Jeremy. It is going to take time, he is an extremely picky eater right now. Jeremy will have scans every three months for two years, scans every six months for five years and then scans once a year. This first year is the most critical. It is a year of patiently waiting and hoping that the cancer does not come back. We also hope that a new cancer that can be caused from the radiation or chemo does not develop.

Jeremy was granted his wish and we are going to Disney World this month. He is so excited! The whole family is excited! He is also registered for 1st grade and is looking forward to going to school.

Blood Transfusion Tomorrow

Jeremy had blood drawn today and his hematocrit is low. We are going to the hospital tomorrow morning for a blood transfusion. Jeremy has been tired and irritable, the transfusion will help him feel much better. 

We do have some fun news. We have a new bunny. He is three weeks old and cute as a button. Ireland and Jeremy named him Socks, because he is black with white front paws, that look like socks. The name fits.

Our new bunny Socks!

 This bunny is getting lots of love!

The bunny is already nibbling on the garden!

Ireland and Socks

Jacob built the bunny hutch from scrap material. He did a great job!

Socks in his new home.

Last Chemo!

Friday Jeremy was administered his last chemo. Saturday morning Jeremy rang the bell signifying his last chemotherapy, while the nurses gathered together clapping and singing "Happy Last Chemo to Jeremy" (tune of Happy Birthday).  We were overcome with several emotions, joy, relief, gratitude, exhaustion, reflection, but most of all hope. Hope and desire that Jeremy will never have to go through this again. 

Jeremy all packed up and ready to go home!

Megan and James decorated the house for Jeremy's homecoming.

Jeremy cutting off the last link on the chemo count down chain! He was so happy to cut off the last link! It is hard to smile when you feel sick and yucky from chemo. 

Jeremy had a rough day yesterday. I had a hard time getting him to lay down and rest. He wanted to be up, even though he was nauseated and throwing up most of the day. We hooked him up to an IV fluid during the night. We are also concerned that he is getting mouth sores from this last chemo. Although chemo was administered on Friday, a complete chemo cycle is three weeks. Jeremy will receive treatment and care to help him get through the side effects of the chemo for the next couple of weeks. He will start the Neupogen shots today. 

Jeremy has a bone scan and CT scan scheduled on August 6th and an MRI on August 7th. We will also meet with Dr. Spraker on August 7th to go over the results of the scans. If everything looks good, we will be able to schedule a surgery day for Jeremy to have his port and G-tube removed. We expect great results. They will monitor Jeremy closely through out his childhood for any signs of the cancer returning and also for any complications that may arise from the chemo and radiation. Jeremy will have scans every three months for the next two years, then every six months for five years, and then once a year the rest of his childhood. 

Over the Slump

Jeremy seems to be over the low ANC slump. His ANC has been around 2000 for the last two weeks. He stopped taking the Neupogen shots on Monday and his ANC still looks good today. Yeah! We had a fun 4th of July, celebrating the day at a family barbecue. Jeremy played nonstop with cousins and loved the fireworks. He has been able to attend swim lessons this week. He looks so forward to going each day. It is at a private pool with seven kids in the class. The physical therapist said this is great exercise for his legs. He has been praying each day "bless my numbers will be good so that I can go to swim lessons". We are so thankful that his numbers are good and he has not missed a day. Ireland is in the class and so are their friends  Allysa and Brady. He is pretty tired the rest of the day, but this has been great for his emotional well being. It was so hard for him when his ANC was low for so long and he had to stay home. He felt so isolated. It is so nice for him to be able to get out of the house and go do things again, especially during the summer time. 

Jeremy and Ireland at swim lessons.

Jeremy and his friend Brady.

Jeremy learning how to do the elementary back stroke.

Jeremy jumping off the diving board!

Farmington Swimming Pool 

On Thursday, June 28th, Jeremy's ANC was up and he was scheduled for chemo the next day. He was sad about having to go to chemo. I told him that since his ANC is good and chemo is not until tomorrow that we could go do something fun. I asked him what he would like to do. He said, "go swimming!" So we put on our swimsuits, hopped in the car, and went swimming. 

Making the best of "hanging" around at home!

Week 37

Jeremy had chemo on Friday. He tossed another penny into the little pond at the hospital. His wish this week was that his chemo will "be quick". I told him that making wishes is fun, but it is through the power of prayer that wishes come true, if it is Heavenly Father's will. The nurse started his IV fluids and Jeremy threw up. Before the nurse was able to administer some anti nausea medication, he threw up again. I think that he was anxious knowing that when chemo starts he is very sick. It was a tough night. I asked the attending doctor and nurse practitioner how important is it for Jeremy to do his last chemo. It is so hard to see him so sick, it would be so nice to be done with chemo. They told me that it is vital that we do the last chemo. It would be taking a risk not to. They said that although we have great results from his last scan, there are still microscopic radical cells that can grow into another cancerous tumor. The chemo is still killing these microscopic cells. We need to see this through to the end. We can do it! Jeremy's last chemo is scheduled for July 20th. Each VAC chemo is a three week cycle, of labs and Neupogen shots. His chemo should be complete by August 10th, a few days before his 6th birthday. He will still have scans, labs, and doctor appointments, but the chemo part will be done. Jeremy had labs this morning and we are waiting to see the results. We are hoping that he will be able to watch James' baseball game on the 4th of July and attend a family BBQ. He is doing well today, and has recovered quicker than usual from this last chemo, another blessing! 

Today's Lab Results

Jeremy's ANC dropped to 200. He will not be able to do chemo tomorrow. We will give him Neupogen shots for three days and check his blood count on Thursday. Hopefully he will be able to do chemo on Friday.

Our ward Primary made a CD of the children singing and talking to Jeremy. He has already watched it three times. He misses the association of his friends.

Jeremy is having separation anxiety when I leave the house. We are working through it. Mike stayed with him while I went to church yesterday, to try to help him adjust to being away from me. Jeremy has a routine that helps. He likes to set a timer for the amount of time that I will be gone. He has memorized my cell number and knows that he can call and talk to me. He also gives several hugs and a wave from the porch as he watches me leave. We are hoping that by working through this now, it will help him be ready for school in the fall. I am also planning on volunteering in his classroom. It is nice that he sleeps in, so that I can get my daily walk in before he wakes up. His anxiety will probably lessen when chemo is over. We are still hoping and praying that chemo will be done by the end of July.

Out Patient Chemo Today

We just returned home from chemo. Jeremy fell asleep on the way home and is now sleeping on the couch. His blood counts are good. His ANC is very high. For now, we can stop giving him the Neupogen shots. Jeremy will have his blood drawn on Monday and hopefully his counts will stay up for chemo on Tuesday. I was talking with the doctor today about how tired Jeremy is when his ANC is low. He said that the tiredness is from the red blood cell count (hematocrit) being low. Jeremy's was 26, not low enough for a blood transfusion, but low enough that he will feel tired and irritable. Hopefully he will start to have more energy now that his counts are up.

A few days ago we noticed a link missing from Jeremy's  count down chain. We asked him about it and he said that he took it off. He thought that if he took one of the links off, that he would only have to do two chemos instead of three. We had to explain to him that it doesn't work that way. 

There is a little water feature outside of Primary's that we walk by each time we go to the hospital. Jeremy likes to toss a penny in the water and make a wish. I always ask him what his wish is. "I wish that I will grow big", "I wish that I will make a new friend". Today's wish was, "I wish that I will get better someday". I talked to him about how "someday" is very soon. He should be done with chemo by the end of July (a month is such a long time for a child!). He will still have scans and surgery to remove the port, but the hardest part will be over. 

Disappointed!

We are so disappointed! Jeremy was suppose to attend Camp Hobe today. It is a camp sponsored by Primary Children's Hospital for children who have cancer and for their siblings. It is highly supervised and provides medical care with physicians and nurses. They are also very careful  for those who are immune suppressed, the kids attending only have to have a ANC of 500. There are many medical forms and doctor release forms to fill out. They even do a medical screening of each camper in the parking area outside of camp, to identify anyone who may be ill, and reduce exposing others to their illness. If someone gets sick while at camp, they are sent home. Ireland attended the camp last week and had so much fun. It was a great experience for her. She developed a friendship with a girl her age who has cancer and is in remission. Jeremy and I were planning on attending the day camp today and on Tuesday. His numbers were great on Thursday and has been on the Neupogen shots for a week. We thought for sure he would be able to attend. We were so surprised when his ANC dropped to 300 on Sunday. He has never dropped low while on the Neupogen shots. He had his blood drawn again today. We were hoping that maybe his ANC would come up to 500, but instead it dropped to 200. We are continuing the Neupogen shots and he will have his blood drawn again at clinic on Thursday when he has the Vincristine chemo (this chemo is not count dependent). Hopefully Jeremy will be able to go to camp next year. We are so disappointed, but there is one positive possibility. His VAC chemo hospital stay is next Tuesday and his ANC needs to be 750. He has a whole week to get his ANC up so that the VAC chemo is not delayed. 

One More Chemo Down, Three To Go!

Jeremy had out patient chemo yesterday. Jeremy was so excited to take a link off of his count down chain that he ran into the house and took a link off before I even got inside! The Vincristine chemo does not make him sick, which is nice. It has other side effects that we are dealing with. It affects the nerves. Jeremy has been doing physical therapy so that he will not trip when he runs or trip walking down stairs. We have noticed an improvement and he has not tripped for a few weeks. The physical therapist when examining him was pleased with the significant increase of strength and range of motion in his legs. The Vincristine has also affected the soft pallet in his throat. For a few days after he has had the Vincristine chemo, he will cough when he drinks and when he drinks from a straw, liquid will come out of his nose. We have to remind him to slow down and take little sips. His voice is also different and sounds nasally because the soft pallet does not close properly. All of these side effects from the Vincristine should go away when chemo is completed. The physical therapy has helped. Also riding his bike is a great exercise for his legs and Jeremy loves riding his bike. He has out patient chemo again next Thursday. The Vincristine chemo is not count dependent, so he has those regardless of what his ANC is. So we do not have to worry about it being delayed. Only one out patient chemo and two hospital stay chemos left to do!

Cutting Off A Link From The Count Down Chain

Jeremy cutting off one of the links from his count down chain. Only four more chemos left to do!

 That big smile says it all! 

Friday, when the nurse was accessing Jeremy's port, he started crying and said that it hurt. The nurse realized that she had missed his port and pulled the needle back out. I understand that this can happen, but it was the first time that it had happened to Jeremy. I was not sure how he was going to react, and if he would let her try again. I liked how the nurse handled the situation. She apologized and said that she would be back in a minute. She returned with a nurse that Jeremy was familiar and comfortable with. He was hesitant and nervous, but he let the second nurse access his port, which she did successfully. I was so proud of him! That second attempt took a lot of courage! 

Chemo Today!

Jeremy's ANC has come up and we are heading to the hospital for chemo. We have been praying that it would not be delayed again. We are grateful for this tender mercy and blessing! Jeremy is in good spirits today. He has grasped the understanding that with each chemo, he is closer to being done. He is looking forward to coming home and taking a link off of the count down chain.

ANC 400

We thought that Jeremy would be able to do chemo today since his  ANC was 3,000 but within a few days it dropped to 400. He will have a blood draw on Thursday, and hopefully his ANC will be high enough to do chemo on Friday. Last night when I was tucking Jeremy into bed he asked me "Mom, I know that my birthday is August 13th and I will be six (years old), but when is that again?" I told him about two months. He said, "Oh, will I be done with chemo by then?" I replied, that he might not be, but if not it will be o.k. He closed his eyes real tight to hold back the tears. It breaks my heart. He wants so much to be done with chemo. We all want for him to be done. It is so hard when chemo is delayed, we just want to push through and finish.

We helped Jeremy make a "count down chain" to the end of chemo. The three green links are the overnight chemos and the two orange links are the outpatient chemos. He is looking forward to removing each link! This helped him visualize how close he is to the end. 

Last Friday evening, HopeKids sponsored an event at Hogle Zoo. The zoo was closed to the public so there were only HopeKids and their families. Megan, Ireland, Jeremy and I had a great time! Jeremy loves these events. We were so glad that his ANC was high enough for him to go. I am always so humbled at these events. There are children whose battle with a life-threatening illness is especially difficult and challenging. We are reminded of how truly blessed we have been.  

Melt Down!

Yesterday was an emotional day. When I told Jeremy it was time for chemo, he changed out of the pajamas that he slept in, into some old pajamas that are a size 4. I suggested that maybe it would be better to wear clothes to chemo since it was outpatient today. He got very emotional and insisted on wearing these pajamas. This was unlike him and I decided not to push it, and let him wear the old pajamas to the hospital. As we were driving to the hospital Jeremy had a complete melt down and did not stop crying until we reached Salt Lake City. As I talked with him, he calmed down and seemed fine by the time we reached the hospital. In the waiting room there is usually a craft or art project for the children to do while they wait. Jeremy was cutting out a paper puppet when the nurse asked him to come over to the scale for his weight and vitals. Jeremy ignored her and kept cutting the paper. She asked again and he kept cutting. I told him that he could keep working on his puppet in the room while we wait for the doctor. He kept cutting away. I told him the quicker we do chemo the faster we get to go home. He kept cutting and said, "I want to go home now." The nurse said "He is usually so cooperative, I have never seen him like this. I'll be back in a few minutes." I looked helplessly at the other two mothers who were waiting with their child. The one mother said, "My daughter was the same way. She was very cooperative until the last few weeks of chemo. It gets so hard to do after so many months." The other mother nodded with empathy. By the look on her teenage son's face, it was obvious that he did not want to do his chemo either. The nurse returned with Rachelle, the child life specialist. Rachelle asked Jeremy if he was having a rotten day. Jeremy continued working on his puppet. She told him that when she is having a rotten day, and feels rotten, she likes to throw rotten eggs. Jeremy looked up at her. She asked Jeremy if he would like to throw a rotten egg. She threw down a rubber egg and when it hit the floor, it looked like a fried egg. She handed the egg for Jeremy to throw. After he threw it at the floor a couple of times, she asked him if he would like to throw it at a wall. Jeremy nodded yes. Rachelle said, "There are a lot of pictures and people in here, it would be better to throw it against the wall over there (the wall by the scale). Jeremy walked over to the wall by the scale and threw the egg. Rachelle than asked Jeremy if he would like to make a target to throw his egg at. He nodded. She then suggested that while the nurse gets his weight and vitals she will get some supplies and meet him in his room. 

Rachelle kept talking with Jeremy as he threw his egg. He threw it so hard, that it broke and water splashed all over. We laughed and he felt much better. 

Jeremy making slime.

Dr. Spraker came in and Jeremy was excited to tell her about the rotten egg making a big splash and the slime that he made. She told Jeremy that he only has to do five more chemotherapy treatments. Three hospital stay chemos and two outpatient chemos. She also told Jeremy how proud she is of him for doing his chemo and how pleased she is with the results. When the nurse came in to access his port and administer his chemo, he started to withdraw again. After some gentle persuasion he reluctantly cooperated. When we were leaving everyone praised Jeremy for his courage and bravery for doing chemo. What a great hospital! Today he is happy. We are not sure what to expect next chemo, we might need another egg!