Counting down

Life is beautiful. Look at these flowers. These are blooming outside the building where I work. We don't see this in Idaho this time of year. It has been very rainy and the hills are alive with new growth. It really is a beautiful area and we are thankful that we can be here with our son.

Bobby's blood counts (white blood cells and platelets) are at an all time low. He is really tired as a result. The radiation burns have improved a bit so I can give him very gentle hugs. Swallowing and talking has become difficult and painful. He waits as long as possible to swallow, then braces himself for the pain. He had strep throat several times as a child and says this pain now surpasses that. He is thankful for the feeding tube though. It's the only way he is able to get in enough calories. There are times that the tube is very convenient. Here we are playing dominoes while he "eats". He has to be a little creative to find a place to hang the bag.....this one is hanging from the chandelier. It's really one of the best uses for this chandelier because it doesn't provide very good lighting,

Christmas was at Bobby's. He asked me to make my Christmas morning specialty from his childhood......sugary donuts made from canned biscuits. HA!!! He couldn't eat any but he said the smell was nostalgic.

Caroline made a nice meal......this is what we ate. A fancy chicken and rice meal. This is what Bobby ate. A delicious Vita mix blended smoothie. We did have to sit up to eat ours. Bobby can lay down, talk on the phone, and play
games while eating. He can even sleep. He came over yesterday and ended up needing to sleep. He was still having lunch but it was no problem to lay down and sleep while the nutrition continued to flow into his stomach. He said he's gonna keep the PEG tube for awhile even when he doesn't need it anymore. I think he's just kidding. I know he's looking forward to being able to enjoy the taste of good food again.

Bobby had his next to last treatment today. His platelets were even lower today than yesterday so they won't be doing any more radiation on his sacrum and tomorrow, Tuesday, December 28th will be his last treatment on the head and neck area. He has a meeting with his main oncologist Tuesday morning. We'll be attending that with him and hoping to get some information regarding whats next.

Bobby was diagnosed on May 20th. It's been just over 7 months. Sometimes it feels much longer.

Hugless in California

We arrived at our "home away from home" on Sunday, December 19th. Terry (our landlord) had put up a few decorations to make the place festive and many of the apartments in the complex had lights strung on their balconies. It's looking a lot like Christmas.

Our boy arrived at the apartment looking very tired and very raw. His skin is so red from the radiation and very tender. I made him a paper fan. My pathetic effort to do something helpful. No hugging for now. I don't like that at all. If any of you asked me to give him a hug for you, it's gonna have to wait. His weight is holding at 151-152. The sores in his mouth had cleared up but a couple new ones on his tongue are causing him problems with swallowing and talking. He drank his last smoothie on Saturday and has had to switch to feeding tube only for now. We're praying these new sores will clear up quickly. We gave Bobby a Vita mix as an early Christmas gift and he has been brilliantly concocting high calorie healthy smoothies in order to meet his caloric needs for the day so he won't lose any more weight. Thankfully the Vita mix gets them smooth enough to use in the feeding tube. Yesterday, a lunch buffet was provided at the cancer center. While Bobby was in getting his radiation, one of the staff members asked me what he could bring today that Bobby would enjoy. He said he knew that Bobby was hyper vigilant about eating healthy and he wanted to make sure there was something he would enjoy. Unfortunately his taste buds are non existent so there's really nothing. He hasn't lost his sense of smell, so food smells good but has no taste or has an unpleasant taste. He said when his taste buds come back he's going to surround himself with chips and salsa and eat that for two days. I'll buy him a case of chips and make him all the salsa he can stand.

Just a few more days and he will be done with treatment and then we wait.

Chemo and Radiation

I've gotten a bit behind with my postings. I appreciate that you want to know how Bobby is doing and that you take the time to read the blog. I'll get you caught up.

We had originally planned to stay in California through Thanksgiving and return home on November 30th. We extended our stay so we could be there for "chemo day" and the recovery days, and because it's hard to leave him when he's not feeling well.

Bobby had his appointment with the audiologist. He has "significant" hearing loss in the high frequency range which may or may not be permanent. That loss is caused by the Cisplatin. His oncology team has recommended a total of three Cisplatin infusions during the seven week radiation treatment. He could choose to skip these additional chemo treatments all together (he's already had one) or they could reduce the dosage depending on how he's feeling. It takes several days to bounce back from having chemo and with the addition of radiation, recovery is slower than before. The decision to have chemo will be discussed with Dr. Eisenberg. In anticipation of receiving more chemo and not feeling great over the next few days, he decided he wanted to head to the beach on Sunday afternoon. His favorite beach.....Point Reyes. It was beautiful.... windy and a bit rainy..... but beautiful. This is part of the description from the Point Reyes website "thunderous ocean breakers crashing against rocky headlands and expansive sand beaches to its open grasslands, brushy hillsides and forested ridges" Very accurate description. The waves were huge.There weren't a lot of other people around which made it the perfect place to walk and think and be thankful for this time and enjoy God's beautiful creation with our son.

His next round of chemo had already been scheduled for Monday, November 29th. After discussing the options with Dr. Eisenberg and going over the hearing test results, the decision was made to have the chemo but to reduce the amount by 30%. Over eight hours later both chemo and radiation were done for that day.

His radiation has been expanded to include his sternum, spine at L5 and the sacrum. Radiating those areas requires a team to "shrink wrap" him in place with the use of what looks like a shop vac. Apparently it's a twenty-five thousand dollar shop vac.

His radiation oncologist, Dr. Miyawaki (a very gentle, kind man) spent a lot of time with us explaining every detail of the operation. It's a big production to get him ready. The radiation on his head and neck is IMRT, the radiation on the other areas is Stereotactic body radiation therapy (SBRT). The technology used in SBRT allows external beam radiation to be delivered with pinpoint accuracy. One of the benefits of the improved accuracy is that treatments can be completed in a short period of time. Typically, SBRT consists of 3 to 5 treatments carried out over the course of 1 to 2 weeks. The precision associated with SBRT simultaneously helps reduce the dose of radiation to normal tissue around a tumor, thus helping to reduce side effects for patients (http://www.umgcc.org/radiation_oncology_program/sbrt.htm). We're all in favor of reducing the side effects. His neck is very red and itchy after a couple weeks of radiation. Hopefully the other areas will fare better.

The days following chemo were rough. Even though the medical team has recommended the additional Cisplatin, they don't have any hard evidence that it is any more effective than not having it. With that in mind Bobby has decided not to have the third infusion of Cisplatin. He's tired and tired of not feeling well. He's been so strong and positive and doing everything he can to be well and stay as healthy as possible. The end of treatment is near and not a day too soon.

We had to head home for a few days and will return on December 19th. We'll be with him through Christmas and hopefully we'll be there for the last day of radiation which should be on the 27th or 28th. We want to celebrate that with him. He is passionate about life and has been passionate about getting through this treatment to get back to being healthy. He always has a positive attitude and is pleasant to the medical personnel. He says they probably see enough people not feeling well and being grumpy. He wants to bring a little cheer to their day. Isn't that great. I love that about him. We're praying for him to have good days.

"rejoicing in hope, patient in tribulation, continuing steadfastly in prayer;" Romans 12:12