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! 

Back to Chemo

Jeremy's ANC was 900, finally it was high enough to do chemo last Thursday. We started his anti nausea medication earlier, it helped a little, not much. We have decided that it is what it is...chemo. Chemo is the price you pay to be cancer free. We are learning endurance as we see this to the end!

Ireland has been very good at entertaining Jeremy when his ANC is low and he can not go out. One day she put a pom pom and hat on Jeremy. They came to me laughing, "Look Jeremy has hair!"

Chemo delayed again!

Jeremy's ANC slightly increased to 678, still not high enough for chemo. He will have blood drawn on Wednesday. Hopefully it will be high enough for chemo on Thursday. This is the third delay for his chemo. We are a little frustrated that this is not going as "planned". We are hoping to be finished with chemo by the end of July, so that Jeremy will have a month to recover before school starts. We are realizing that he is still vulnerable and complications may arise. During these last weeks of chemo the body gets tired and it may take longer to recover, especially for the bone marrow to continually make new blood cells. If Jeremy continually struggles with a low ANC, it will make for a challenging summer. It delays his chemo, which delays the end of treatment (he still has to complete all of his chemo treatments). He is more susceptible to infection and illness, so we can not take him to church or other public places, and he can not have play dates. It also makes him feel tired. Jeremy was not put out that chemo was delayed! I told him no chemo today maybe on Thursday and he cheered "yippee"!

ANC Still Low

Jeremy's ANC is still at 600, so chemo is cancelled again. The plan is to wait until Sunday for a blood draw, if his ANC is high enough, then he will have chemo on Monday.

Chemo Cancelled Today

Dr. Spraker cancelled Jeremy's chemo today. His ANC (absolute neutrophil count, ability to fight infection) is  low. Jeremy's ANC is 600. The ANC needs to be at 750 for chemo treatments. He will have blood drawn again on Thursday and if his ANC is high enough, he will do chemo on Friday. For now we have to keep him home and be extra careful from exposure to germs. I had a feeling that his numbers had dropped. He has been tired and is complaining that his arm hurts. When the ANC count is low, it can cause tiredness and muscle pain.

Even though he was tired he still wanted to play with friends yesterday. When I told him that he could not play, he was sad and said, "but my tumor is small, I can play with my friends now". I had to explain to him that although his tumor is small, he is still sick and vulnerable while he finishes chemotherapy. His ANC has to be at least a 1000 to be able to play with friends (a normal ANC is 3,000-5,000). It is going to be a challenge this summer on the days that Jeremy will not be able to play with friends. It is hard for him to see the kids outside playing and not be able to join them.

Although we are still fighting the daily battle, we have much to be thankful for! We are so thankful to know that the radiation and chemotherapy are working! We have successful results! We still need to see this through, three more months of chemo, but the positive results have eased our minds. We are thankful for the excellent medical treatment that Jeremy has received.

My heart is full of gratitude for a loving Heavenly Father who hears our prayers, knows our needs, and strengthens us to endure our trials. I am thankful for our Savior Jesus Christ, "He lives to grant me rich supply. He lives to guide me with his eye. He lives to comfort me when faint. He lives to hear my souls complaint. He lives to silence all my fears. He lives to wipe away my tears. He lives to calm my troubled heart. He lives all blessings to impart." (Hymn #136, I Know That My Redeemer Lives, second verse)

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!