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!"