October Rundown

I've wanted to keep more detailed notes, but I'm burnt out. I want to have enough pictures to capture the days, so I keep trying to snap them. I guess there is no rule that you have to have a picture to go along with a post. I like too, but I guess not today.

End of September got quit bumpy. Jacob's taste for foods changed. Things he loved to eat, he abhorred. Watermelon worked for a few days (stupid low calorie no nutrient watermelon). Jacob explained, "it doesn't really taste like watermelon, but I still like it." There were days that I begged him to eat. There were days were I insisted that he sit until he ate something - anything. He would be in tears (and so would I on the inside - or in my closet). He seemed depressed, burnt out, and angry. I understand the feelings. I am currently indebted to Carnation Breakfast Drinks. I can get Jacob to drink their chocolate milk.

So for October we searched for ways to pull out of the funk. Our oncologist signed papers for us to attend Cancer Camp for families- get out with other families, play, have fun. It was bad timing but calendered anyway. Jacob's counts came back that week at their lowest to date. Honestly I was afraid to have Jacob out on someone else's turf when he was his weakest self. We decided to skip cancer camp (may we have a raincheck Ronald McDonald House?) and create a camp of our own.

FAMILY CAMP - Jon set up the tent in the backyard - air mattresses and all. We borrowed a large screen and projector from a kind friend for an outdoor movie night. We lit the fire pit and ate around the fire. Then we cuddled up and put on "Swiss Family Robinson." Can you believe that Jon had never seen it? I practically had it memorized. I, of course, had treats - that makes any activity special. In typical fashion, Jacob & Jessica fell asleep. James had a few good laughs and stayed up to the very end.

GRANDMA TIME - Jon flew to DC on business for 6 nights. My mom flew in to help me with everything. It was big chemo week. I was still recovering from sleep deprivation and a bad cold. Oh - add allergies too. I was worried about doing the treatment outpatient since we hadn't before. I dreaded the long day, but we made it home before bedtime. Grandma spent time playing games with the kids. She prepared meals, packed lunches, and baked banana bread. She tidied the house, vacuumed the floors, scrubbed the bathrooms. She had tea parties and drove carpools. She was a great strength to me and the kids loved having her here.

FALL SOCIAL - This is an activity we attend every year at the elementary school. I usually prepay to get wristbands so the kids can do all the games. This year I didn't know who would be able to go. Thankfully Jacob's energy continued to rise through the weekend. The kids played the carnival games and collected prizes. They laughed with friends and ate all their candies before dinner. I was so happy and relieved that we were able to go.

CHEMO BREAK - Having a break from chemo this month was fantastic. Jacob had his large dose the first week. Then he has taken two weeks off to get his ultrasound & CT scan done. His counts are back up. His energy is back up. His appetite is back. We meet with our doctor next Wednesday to talk about the results of his tests. We still see the lingering effects in our son. That's the saddest part. Visually you can see that his eyelids droop. His fingers are always curled. He holds his hands in a loose fist. Sometimes he complains of seeing double. Stupid side effects. I hate that he can't do his own buttons or snap his own pants. He struggles getting his granola bar opened. He has always been so good and patient with his hands. He spent hours putting Lego models together. He's had desire to go on a bike ride, but in the evenings his legs are cramped. He is easily famished - and he's not on chemo right now. Linger linger linger. None of us are excited about starting again in November.

HALLOWEEN - I was real happy that the chemo break landed over Halloween. He loves to dress up and he'll love going trick-or-treating. He's gone with me a couple times to shop for costumes, get an Icee, and run an errand. I like being out with him. He usually takes his hat off. He doesn't notice the stares from little kids or the second glances from adults. He's just not a hat wearing type of guy. He went with Jessica's preschool to the pumpkin patch. They had a bouncer there and a slide - he LOVES to climb and jump. We also had a Harvest Party + Carnival at church. He dressed in his pirate costume and was running with the boys all evening. He has a list of candies that he doesn't like, but he's still looking forward to getting a bucket full next week.

MAKE A WISH - Jacob had an interview with Make a Wish Foundation. He told them a bit about himself and they talked about some ideas that they might do for him. Originally when he heard about Make-a-Wish he asked, "Can I wish that I didn't have cancer?" Later he came and asked me if he could wish for more wishes. Today he was kind of stumped. This is a huge decision. He wasn't sure what one thing he wanted more than anything else. For now they are talking about throwing a party with bouncers for him. I think we'd like it to be after his next rounds of chemo - maybe as an end of chemo celebration. Also we hope it will serve as a light at the end of the tunnel.

I know that I dedicate most of this blog to Jacob and what he's doing and how I as a parent am feeling about it. The cancer is in his body. Because of that there are things that only he can know. It is his fight, his pain, his victory, his hurt. He is the one that faces the needle to the chest each week. He is the one with the nausea and vomiting. He is the one whose hair won't grow (most of the lashes are gone now too). He is the one that gets wheeled into surgery. But, we are his family. We each feel our own pain, anger, frustration, hurt, and anxiety because this is happening to somebody we love. When you are part of a family, what happens to one is happening to each one.

Jon and I don't go many days without tears getting in the way. We are continually feeling emotions in opposition to each other. Great heartache. Extreme gratitude. Sadness and comfort. Fear and optimism. Anxiety and peace. Disappointment and joy in the simplest things.

James has definitely felt it. I had an interview with him a few weeks ago. I asked him what he thought about Jacob having cancer.

Sometimes I think it's stupid.

Why?

I don’t know... Because. You can’t do the stuff we normally do.... like play in the sand, drink out of water fountains. Usually when he comes back from the hospital he acts kind of different. I don’t know what. He doesn’t have much energy. He throws up a lot more.

Does it seem like he’s changed?

Yeah.

What do you miss about how he was?

I miss his hair.

Do you guys play as much?

Not really because I like playing rough games like tag & basketball – it’s really hard on him.

You like to be rough?

Before he had cancer we used to always tackle each other and everything and we thought it was fun. Now we can’t do it.