Last Day of Radiation!

Jeremy received a certificate for his completion of radiation!

Jeremy and I had a little celebration for his last day of radiation. We went up to the 6th floor at the Huntsman to the cafeteria, which is more like a restaurant with a beautiful view. Jeremy ordered a chocolate milk and we did a few pages from his "Cars" word search (he really likes word searches and is good at it!). As we left Jeremy looked up at me, smiled and said "That was fun!" He is such a good kid! I wish that we could of done more, but we had to head over to Primary's for his VAC chemo stay.

Jeremy's chemo went very well. We were able to manage his nausea by timing his medication better. It also helped that they did not give him one of his chemo medications, Actinomycin-D. It was too hard on his body with the radiation, so he got a little break and he will get this chemo medicine in three weeks on his next VAC chemo stay. While we were waiting for his chemo to be prepared by the pharmacy, the nurse gives Jeremy  fluids through his IV. He will be hooked up to fluids before, during, and after to "flush" the Cytoxan chemo out of his body to help protect his bladder from the toxicity. While we waited, we played games, read stories, did word searches, and even played basketball by using wadded up paper towels and the garbage can! We actually had a fun day. After Jeremy's chemo starts, he is not much in the mood to do anything, so we watched "White Christmas" while sitting together in the overstuffed chair. He did get a little fever, but was able to keep it down, and we were able to come home on Wednesday.

 Jeremy started coughing when he drinks liquids. Last Monday, while he was drinking milk from a straw, milk started coming out of his nose. I told Dr. Poppy about this on Tuesday, he set us up with a speech therapist, which we saw on Wednesday at Primary's. The radiation may have weakened Jeremy's soft palate. It has affected Jeremy's speech and swallowing. In six weeks after the swelling goes down and has a time to heal from radiation, Jeremy will see a ENT specialist and they will use a scope to check out his soft palate. In the mean time he will continue to see a speech therapist, and we will monitor his swallowing closely. They are pretty sure this is temporary and will go away as he recovers from radiation.

Jeremy was in good spirits when we came home on Wednesday. When the kids came home from school, he wanted to melt chocolate chips and dip marshmallows. James and Ireland were happy to join him! Jeremy's tastes change day to day or hour to hour! He may eat chocolate one day and then will not have a thing to do with it for a week. Lately he has liked mild cheddar cheese. We are hoping he will keep eating cheese, it is pretty healthy and has a lot of calories! We did one continuous feed with his pump over the weekend and again last night. Jeremy tolerated it very well, and he decided that he liked doing the feedings at night time. Hopefully with radiation now completed, Jeremy will start gaining weight!

We are so blessed with wonderful family and friends! Everyone has been so good to us! My sweet sister in law told me not to send her any more thank you notes (I have had to send them a few). They just want to serve and do not want us to worry about the formality of a thank you note. She was being very sweet and only thinking of me. It shows her goodness like so many others who just want to serve and not receive anything in return (we have had others tell us not to send a thank you note as well). I do not know if I could do that though, I would feel like one of the "nine lepers" who forgot to express gratitude. So, until people stop doing nice things for us, I will keep sending thank you notes! I just wish that I could get them out sooner!

Bishop Berlin stopped by and brought Jeremy pink bubble gum. He passed some around and said that we were going to have a bubble gum blowing contest. It was great to see Jeremy laughing and having fun, we all had a great time!

Last Friday a few of my friends brought lunch and stayed to visit. It was so much fun! I felt rejuvenated spending time with them. Jeremy even ate a little. On Monday, Brady and Lynae came to visit and brought us a DVD of Jeremy and his friends. Lynae has a talent of taking pictures and organizing them on a DVD with music. We watched it together and I felt emotional as I noticed how much Jeremy has changed, since he has been diagnosed with cancer. I hold onto the thought that this is temporary. Next year Jeremy will be back to school, and will be well enough to do all the things that he use to do. We are optimistic and very hopeful!

Gratitude!

This is Jeremy's 9th week of chemo and today marked his 24th session of radiation (only 4 sessions left!). Yesterday Jeremy had a blood transfusion to increase his red blood cells. He has been so pale and tired, this helped him have a little more energy. The last couple of times after radiation, he has been too tired to walk to the car (we use the valet parking and they bring our car to the front entrance) and I have had to carry him. This morning he was able to walk to the entrance. We are also increasing his tube feedings. We started using the pump and will do some continuous feeds. I was using a syringe of formula in his tube, but this is not enough. We need to get his weight up. Jeremy was hesitant to use the pump another "new thing" to get use to. It has taken much patience and persuasion to convince him that this is good for him and will help him feel better. He is not convinced, but is letting us "try" the pump. He does not like being hooked up to a pole. We can not run it at night because he has to fast each night for the anesthesia at radiation. Also, Jeremy is not too happy to do it at night time because he said it will keep him awake. I would like to try it after radiation and see which way will work best for him. As I am trying to persuade with love and patience with each new challenge, the term "long suffering" comes to mind! Sometimes it is exhausting trying to convince or persuade your children to do what is good for them, whether it be physical or spiritual.

Yesterday at chemo I met a mother who has had three children with cancer. Her three year old had the same cancer as Jeremy and died eleven years ago. Cancer treatment has improved much since then, and her daughter's cancer was in her back and moved into her kidneys. Her son (12-13 years old) has cancer in his leg and his leg has been amputated to the knee. His first round of chemo did not work and he is on a study chemo therapy right now. Her now 17 year old daughter had breast cancer at age 12 with a partial mastectomy. She is now in the process of having another mastectomy, the doctors feel her risk is high and it would be better to do a full mastectomy. Meeting this courageous woman with such challenges, put my challenges in proper perspective. I have a feeling that I did not meet her by accident. Jeremy fell asleep during his transfusion and I pulled out the December Ensign. I opened it up to the First Presidency's Message and to my surprise it was not about Christmas but the message was, "The Choice To Be Grateful". I feel very humbled and am grateful for my lesson on gratitude yesterday. I have been very blessed and have much to be thankful for, especially for my testimony. I believe in a loving Heavenly Father who watches over his children and hears and answers their prayers and through the Holy Ghost we can receive comfort and guidance in dealing with our trials. I am Thankful for Jesus Christ and through His Atonement and Resurrection, we can find healing both spiritually and physically and have the opportunity to live with our families for the eternities. I love my family! I am also thankful for the love and support that we have received from family and friends, we have been very blessed.

Thank you for praying for Jeremy!

Keeping Jeremy from loosing weight is a constant challenge! I was a little frustrated on Friday when he was weighed at radiation and he lost the one pound that he had gained (in just three days!). I know that one pound does not seem like much, but for a skinny growing kid like Jeremy it is a concern. The goal is for him to gain not maintain weight because he is still growing. He has his G-tube, which is helpful, but has its limits as well. We can only feed him what his stomach will tolerate. If he is sick or nauseous he will still throw up whether the food is going through his mouth or in his tube. His loss of appetite is a challenge. He will complain that he feels full after a small amount of food or feeding in his tube. I am feeding him small amounts through out the day to help with this. I am working so hard to keep him nourished and feel frustrated that he still lost a pound. Jeremy had asked me if the chocolate that he was eating had vitamins in it and I said no, but its full of calories and fat, and maybe it will help fatten you up! He thought that was pretty funny, but I was being serious!

The Neupogen shots have been helping to minimize the mouth sores and fevers, but he now has a "sun burn" on the outside and inside of his throat from the radiation. He also has fluid and pressure on his left ear (he has an ear tube in that ear). Dr. Poppe said it is from the radiation, and prescribed ear drops. Jeremy will start having hearing screenings after radiation. Dr. Poppe said that Jeremy will have hearing loss in his left ear. How much we do not know, it could be mild and he will still have hearing in his right ear. Jeremy's left shoulder is slumped due to the radiation. This might go away after radiation. Either way, he still walks really cute.... it adds character.

It is a constant effort, taking care of his nutritional needs, skin care, mouth care, and medications. We feel that our efforts are being blessed. Jeremy has been able to stay home and out of the hospital and that is a huge blessing! Thank you for all of your prayers! We believe in the power of prayer and feel everyone's prayers are helping Jeremy! He has been happy and in good spirits. He is also getting use to his shots. The last two nights Jeremy and Mike surprised me by quietly doing his shots. Each night I would say "Jeremy it is time to do your shot" and he would smile and say "I surprised you! Dad and I already did it!" I replied, "But I did not hear you cry or say no." Jeremy would say with a big smile, "That is because I surprised you!" Both nights I gave him a big hug and said that was a great surprise! This was Mike's idea, to find a way to help Jeremy get over his anxiety of the shots and to help ease my emotional stress over watching Jeremy's anxiety. I am so thankful for Mike's support! This morning Jeremy over heard me talking to the pharmacy on the phone ordering more Neupogen shots. He told me that he is not going to cry any more when he gets his shot because he learned how to be brave. I pointed to a magnet on the fridge that says "Russell-Courage" and asked if it is because he is a Russell and Russell stands for courage. He said "No, its because of me."

What in the Wind?

Kind of unusual circumstances tonight as, like so many other's in Davis County, we are being blown away by the powerful winds outside.  At this point our house seems to be holding up ok, but I am in Las Vegas for work until tomorrow and I am just getting this message from Lynnette.  She has always been amazing in times of crisis. I am so grateful for cell phones today as we can talk to each other as normal, even though the power has been out most of the day at home.  Jeremy made it to his Radiation treatment this morning in spite of the wind, and is planning the same for tomorrow.  We just learned all the schools are closed in Davis County for tomorrow so the other's will be able to stay home and not have to brave the weather.
Being as I am updating this post from Vegas, since the power is out at home, I can't really give much more of an update.  I know Jeremy's ANC count is dropping fast and that he will need to get a Nuepogen shot either tonight or tomorrow but according to Lynnette he is in good spirits and happy.

Making Progress!

Today was Jeremy's 19th session of radiation, nine more treatments to go! Jeremy's last day of radiation is on December 13th, a day to celebrate! The gas gift cards have been very helpful! We received enough to pay for all the daily trips up to Huntsman's for radiation. Thank you for your thoughtfulness, that really helped ease our burden.

This is Jeremy's 8th week of chemo (32 weeks left) and he is doing pretty good. His G-tube is very helpful. Jeremy can eat and drink as much as he would like (most days he does not have much of an appetite). We supplement his diet with a high protein, vitamin fortified formula that I give to him in his G-tube throughout the day. He actually gained a little weight this last week. He was at 16.9 kg (37 pounds) and yesterday weighed in at 17.3 kg (38 pounds). The hospital uses the metric system, another thing to learn.

We also started giving Jeremy the Neupogen shots at home to keep his white blood cell count up. Some days he does well, and some days he does not want a shot and will cry. Usually Mike gives the shot while Jeremy sits on my lap and I hold Buzzy on his leg to numb the area. This last time, he wanted me to give the shot. I do not like giving shots! I do not like the way the needle feels while I am pushing it into his skin and it is stressful. Afterwards, I asked Jeremy if it hurt and he said no, and he went into the kitchen to eat a brownie. Mike could see how I was feeling and he took me into his arms and I cried. I feel like I am getting a crash course in nursing! Which is ironic because when I was younger I thought about going into nursing, but did not like needles and blood and realized this was not for me....now here I am, a "nurse" for Jeremy.

Last Saturday while it was sunny and nice, we went and picked out our Christmas tree. It was a short outing, Jeremy tires easily, but we had a great time. While Megan was home we decorated the house for Christmas.

Jeremy gave me this picture. It says: To Mom From Jeremy. He said it is a picture of me decorating the Christmas tree.

Thanksgiving Day

We have much to be thankful for this Thanksgiving. We have been very blessed! Mike's sister Angie made and delivered Thanksgiving dinner. It was amazing! Everything tasted delicious! Jeremy's favorite was the rolls, Ireland's was the turkey, Mike and Megan's favorite was the sweet potato casserole, Jake and James loved the mashed potatoes. I can not decide on a favorite, but the cranberry sauce and green bean casserole were extra delicious! 

After dinner, Jake played his guitar while Megan sang along and the kids played with Legos. Grandma Russell sent up her yummy homemade pies, which we will enjoy later this evening. We would also like to drive over to Layton City Park to look at the lights. 

When we were cleaning up after dinner and putting the leftovers in the fridge, Jeremy pointed to the red button thermometer in the turkey and said "the turkey has a G-button too!" Here is Jeremy's G-button on his stomach. After it is healed we will be able to take the tubing off and on for feedings. We can also put medicine and water (to keep him hydrated when he is not drinking enough) in his G-tube. On Jeremy's chest is his port (IV line). The nurse will take the needle out on Friday, to give Jeremy a little break from it and re access the port with a new needle on Monday. Jeremy cries when they take off the sticky tape, it pulls his skin and hurts. We apply a cream on his skin that numbs the area so that he can not feel the needle going in.

7th Week of Chemo

Jeremy does have a low grade fever, but they let us come home. We are wondering if it is a reaction to the chemotherapy. He also had a fever during his last VAC chemo. If his fever spikes or if he still has it in the morning we will need to call the hospital and will probably have to go back. He did receive a 24 hour antibiotic in his port (IV line) and they did blood cultures, as precautionary. He has been very nauseous and has no appetite. He came home and wanted to go straight to bed. He was very happy to come home, even if he is tired and not feeling his best.

Dr. Poppe wants Jeremy to have radiation on Friday morning. The radiation clinic at the Huntsman is closed for Thanksgiving on Thursday and Friday (they are closed every Saturday and Sunday). Dr. Poppe feels that Jeremy can not miss four days in a row of radiation and since he missed two days for his surgery he felt it necessary to call his staff in on Friday, just for Jeremy. I asked Dr. Poppe if he felt this was necessary and he said that he wouldn't call his staff in on a holiday weekend if he didn't. I feel sorry for his staff having to come in, but feel gratitude for the dedication and excellent care Jeremy is receiving.

Monday night I was reading to Jeremy at bedtime. We were reading his Bible, picture book. Jeremy asked me about the story of Jesus healing the blind man. I told him that story was not in this book. Jeremy said "What if I was blind?" I said, "Well, you would have to remember what everything looks like, like the color blue. You would also use your hands to touch and feel what things are, your hands would be your eyes." I asked him "Are you worried about being blind?" Jeremy nodded his head yes. I said, "Well, the doctors are not worried. They feel that as your tumor shrinks, it will help your eye (his one eye dilates on and off because the tumor is touching his optic nerve). I guess it could happen, but the doctors do not think that it will. If you did loose your sight, I would still love you and it would be o.k.". Jeremy smiled. I said, "If I lost my sight would you still love me?" He nodded yes and smiled. I did not realize that Jeremy was worrying about this. I feel that he may have other questions and concerns, and  he is trying to process what is happening to him.