MRI Results

Good news! We have received the MRI results from Monday. Jeremy's tumor has shrunk 60%. We are pleased with the results. It should keep shrinking, but the Sarcoma tumors do not completely go away with radiation and chemo. The plan is to leave what they call a "dead" tumor. At this point surgery is not an option, considering the location of the tumor. They will reevaluate at week 30, when Jeremy has another MRI, but surgery does not look promising. It is a little frustrating that there will be remains of the tumor left, even if Jeremy is cancer free. We are focusing on the positive, we feel hopeful that he will be cancer free!!!

This is Jeremy's 16th week of therapy. He is about one-third of the way done. Mike was in Tampa, FL for work during this last chemo hospital stay. We talked about having Grandma Stapley come and stay with the kids, but Megan volunteered to come home from BYU for the night and get the kids off to school. Her Tuesday class ended at 3:00 pm and her Wednesday class did not start until 1:00 pm. It was so nice for her to be able to do this for us! Jeremy's nausea has been harder to manage since we have been home from the hospital and he has been very tired. We are hanging in there. Chemotherapy, hospital stays, Dr. appointments, G-tube feedings, Neupogen shots, blood draws, it has all become apart of our daily routine and our "new" normal.

I look forward to my walks with Mike outside in the fresh air. I love it when the sun is shinning but also enjoy getting out even if it is overcast or snowing. I need these little breaks. I only go when I feel that Jeremy is doing well (or sleeping) and we take our cell phone, so that Jake can reach us if there is a problem. Jeremy is usually pretty good about letting me go, but last week he was having a hard time when I would get ready for a walk. Last Friday, I tried reasoning with him, that it helps me be more patient and keeps me healthy so I can take better care of him. I could not persuade him. I said, "You are not happy if I go walking, and I am not happy if I don't go walking. We need to compromise so that both of us will be happy." I suggested that he could watch me from the front window, while I walk around our circle. He finally agreed to this arrangement. He watched me like a hawk, waving to me each time I walked by the window. I have to admit that I was frustrated. That night at bedtime Jeremy reminded us of scripture study (the boys were at scouts and Ireland was at Grandpa and Grandma Aldrich's) so, we read the Book of Mormon together in his room. Jeremy is starting to read and we helped him with his verses. Listening to him read  the little words "the", "shall", "and", softened my heart. It was Jeremy's turn to pray. In his prayer he said, "Help me to read better and help me to let my Dad and Mom go walking together". He was so sweet and so sincere, I felt very humbled. It is no wonder why the Savior said "become as little children". I believe in a spiritual power that comes from reading the scriptures and from prayer. The next day when Mike and I got ready to go walking, Jeremy said "Huggy, wavy" (his little goodbye, he likes to give a hug and wave to us until we are pass the mailbox).

Conversations with Jeremy

We are enjoying Jeremy's two week break from chemotherapy. It feels like we are on vacation! He is running around the house playing and has even gained some weight! His appetite is still poor, but we have increased his tube feedings and it is helping. Next Monday, January 23, Jeremy will have an MRI and CT scan. We are anxious to see how much the tumor has shrunk. On January 24th, Jeremy will be admitted for his VAC chemo.

We wanted to record some of the amusing conversations that we have had with Jeremy.

Once while we were at the hospital, the nurse was preparing Jeremy some Metamucil. I told her that Jeremy is a picky eater and I was not sure if he would drink it. She said, I have a really good trick that works on picky eaters. She warmed up some grape juice and added the Metamucil to dissolve it. She then added cold grape juice and put it back in the fridge until it was chilled. When she gave Jeremy the chilled, dissolved Metamucil grape juice, he said, "Yuck! Somebody put crumbs in my grape juice!"

Jeremy is learning new words. It is pretty impressive to hear a five year old saying medical terms. He will say "When is my next chemotherapy?" "My stomach is sick I think I need some Zofran in my G-tube." "I don't have to go to radiation anymore." There was no school today and Jeremy said, "I want all of the kids (his brothers and sisters) to watch the nurse access my port, so they can see how brave I am." They were pretty impressed with how Jeremy holds his shirt and sits still so the nurse can push the long needle into his port. Jeremy also helps the nurse flush his port with saline and heparin. Sometimes in Jeremy's prayers he will ask for his numbers to be high (referring to his blood count).

We watched a movie over the weekend called "Soul Surfer." Jeremy really wanted to watch it with us, so we had him close his eyes during the shark attack. He made some insightful comments during the movie. He said to us, "Her arm will come back". We said, no it won't come back, she will only have one arm. Jeremy said, "Yes it will, when she dies." I said, "You mean during the resurrection?" And Jeremy said, "Yes, it will come back then." He was thinking much deeper than we were! He also made a comment that her hospital room looked more like her house, it didn't look like the hospital. I agreed with him that it did not look like the hospital room that he is use to, they made the hospital room look nicer for the movie. He also asked "Where is her pole?" When Jeremy is at the hospital he is usually hooked up to an IV pole for his medication and fluids. I told him that she had a pole for the time she was in surgery, but she probably didn't need one while she was recovering. It was interesting how he is processing his circumstance and likening to others.

There is a little boy in our neighborhood who is going to have surgery. Jeremy has been so concerned for him. He has been praying for him and wanted to take him a gift to help him be brave. When Megan came home for the weekend, Jeremy told her all about this little boy. The prayers and gifts that Jeremy has received have helped him so much, he wanted to do the same for this little boy. Jeremy is learning the meaning of the scripture in Mathew 7:12 "Therefore all things whatsoever ye would that men should do to you, do ye even so to them". (I like the clarification in the footnote "good works", "courtesy", "kindness", "benevolence").

We are so pleased with how well Jeremy is doing! Last Friday, the weather was beautiful! The sun was shinning and the temperature was in the low 50's. Jeremy saw the neighborhood friends out playing and wanted to join them. It was the first time he has rode his bike since he was diagnosed. One of Jeremy's friends asked me "Does this mean that Jeremy's fever is all gone?" I explained to her that he will probably be healed of his cancer by autumn. She said "Oh that is a long time!" The children were so good to him. They would say "Jeremy gets to be the leader" and "Jeremy, you pick what we should do". They were so excited that he could come out and play with them. We watched him play for about an hour until he said "my legs are tired" and he went back inside.

Over night the temperature dropped and on Saturday morning we woke up to snow! 

Jeremy was so excited and wanted to build a snowman. He solicited the help of Dad, James, and Ireland.

Ireland built a "tent" and invited Jeremy to watch the "Curious George" movie and eat popcorn with her. 

Jeremy, smiling at Curious George!

We had a great weekend! Jeremy was sick for about three days from his chemo. By Friday, he was doing very well. On Sunday, Jeremy and I even went to Primary (church not the hospital)! I stayed with him, neither of us are ready for him to go alone. The children were so nice to him, welcoming him back. I think that Jeremy's energy level is improving because of the combination of healing from radiation and also getting the nutrition he needs through his G-tube. His appetite and eating is poor and minimal. It is such a blessing to be able to give him continuous feeding during the night. This is really helping him get his strength back. It is so nice to have radiation completed, it made Jeremy so tired and weak. His coughing while he drinks and snoring are also improving. Tomorrow marks four weeks since his last radiation session. Jeremy has a followup radiation appointment with Dr. Poppe tomorrow. 

Jeremy loves to help with his care. He can attach and detach his G-tube, flush the line with a syringe filled with water, and push the buttons on his feeding pump. A nurse was surprised and wondered if I should let him do all this. I said "Why not? I am closely supervising him, he likes doing it, is good at it, and is very careful.  I have noticed that Jeremy is more confident and cooperative by helping and being an active part of his care. It is empowering him. Jeremy no longer gets nervous when it is time for his shot, he helps by rubbing the alcohol on and holding "Buzzy" (vibrating ice pack) on his leg. I was telling Jeremy that one of his talents is music and he said "I also have a talent taking shots". For a long time when the  nurse accesses his port, he would bravely hold his shirt out of the way and tears would roll down his cheeks. Now, he does not even cry when his port is accessed, although he is still a little nervous. The home health care nurse came today to access his port for a blood draw. She mentioned how impressed she is with how far Jeremy has come. 

Although Jeremy has overcome many challenges it is still hard, but he is learning how to do hard things. Last Tuesday when we were getting ready to leave for chemo, I was zipping up Jeremy's coat and I noticed tears running down his cheeks. I said "What is wrong? Do you not want to go to the hospital?" He nodded his head. I hugged him and told him that it will be o.k., that I would be with him the whole time and we would read stories and play games together. I reminded him how important it is to keep doing the chemo so that he can get better. He wiped his tears with the back of his hand and meekly walked to the car to get in.  

Yesterday, Jeremy had his VAC chemo at Primary's. We survived the long night and are happy to be home. Three weeks ago, at the end of radiation, Jeremy started coughing when he drinks and started snoring when he is asleep (he has been doing better the last few days). It is probably due to swelling from radiation. It could also be from the Vincristine (chemo medicine) or a combination of both radiation and chemo. Dr. Spraker thought it would be best for Jeremy to take a break from his Vincristine chemo for two weeks and it was decided to wait on the xray cough evaluation and scope for a few more weeks to give Jeremy more time to heal from the radiation. We are hopeful with a little time to heal that this will resolve itself.