Cancer Stinks!

On October 5, 2011, I went into the McKay Dee surgical center in Ogden to have my tonsils removed. Instead, the doctors found a cancerous tumor growing behind my tonsils. It's called "Nasopharyngeal Rhabdomyosarcoma" and I'm told it's curable about 80% of the time for someone like me. It's going to be a long road, but I think it's going to be 100%.

Tuesday, June 12, 2012

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! 


Friday, June 8, 2012

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.

Tuesday, June 5, 2012

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.  


Wednesday, May 30, 2012

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! 






Sunday, May 20, 2012

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!"


Monday, May 14, 2012

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"!

Thursday, May 10, 2012

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.