FUNNEST Day at the Clinic

Jacob has not had any chemotherapy for 3 weeks (no Vincristine for 4 weeks). His counts are back around where a "normal" kid would be. He still has lingering Vincristine effects. This drug - even at low dose - seems to be rather harsh on him. Sometimes he would get nauseas the following day (that's not common). Perhaps it's because he metabolizes it more slowly and it stays in his system longer. So we set out to discuss his drooping eyelids, double vision, and peripheral neuropathy (muscle weakness in his hands). Over the last 4 weeks his eyelids have slightly improved, but his hands have progressed rapidly. It's all supposed to be temporary. But nerves repair themselves VERY slowly.

According to the protocol he was due for his VA cycle of chemo. I misunderstood and thought that it started on week 14, instead of week 13. So we scheduled a trip to Sea World (thanks to our Social Worker who was able to get us the tickets). We wanted to do something normal, fun, exciting, and outside. Our whole family has been thirsting for a day that just felt fun. I have been relieved all month that Jacob's break would land around Halloween so he could be a pirate and go trick-or-treating - quick before he's too grown up for that.

I was filled with such anxiety when I spoke to Dr. Mathias on the phone Monday and realized that she on giving him chemo today. She was hesitant to postpone (me too a bit). But if we are going to treat the whole child - I'm telling you - this is going to be a great weekend for treating depression, sadness, and overload. The dose that he will now get next week will likely make him nauseas and fatigued. I hope it doesn't, but we will be able to cozy up at home and remember our great trip to Sea World.

Jacob has been aware that we were returning to the clinic. He knew that the days of skipping the port access were winding down. He has mentioned it a couple of times in our family prayers. It's so sweet. "Please help me not to be so scared when they access my port." I'm so proud of him for admitting his fear and for turning to the Lord. I'm also so sad that such a young child full of innocence has to utter such a phrase.

Today Jacob climbed in the car with few stall tactics - there were no tears. Some renewed courage. He asked me to sit in the back seat with him while Jon chauffeured. He was fully expecting to have his port accessed today. We didn't tell him until we met with the doctor and were certain that we could put it off until next week.

Dr. Matthias was sensitive to our concerns. She spent her time talking with us, looking Jacob over. The first thing she said to him when she walked in was, "I heard you are going to Sea World?!" Jacob's eyes were the brightest they've been in weeks.

We will continue chemo next week. Dr. Matthias is going to reduce the Vincristine dose. We are going to be taking Jacob to see a occupational therapist to help with Jacob's hands. And we will see an optometrist to check Jacob's retina - she suspects it is just the muscles around the eye, but we'll check vision too. As we discussed over a month ago, we are seeking out a counselor to help Jake find some healthier ways to express his grief, anger, fear, and anxiety about this experience. So sounds like lots of appointments coming up.

Jacob's nurse came in the exam room with a bag of Halloween treats. He returned the tray with the blood draw needles and tubes when he found out that Jacob is off the hook. He invited Jacob to the back to pick out a costume that somebody had donated. Jacob chose some wrestler costume with muscle pads. That's the happiest I've seen that kid in the clinic. Truth be told - there was a spring in my step too.

All Clear

CT scan results are back - all clear - just the way we want them.

I sent Jon with the old digital camera and asked him to take some snaps of the CT scan so we could take a peek into his experience last Wednesday.

Jacob has to go fasting. He gets an IV & a drink. They look at him with and without contrast.






After the scan, Dad treated him to Cocoa Puffs & a doughnut. Then they were off to do blood work.

Here's to Wishing...

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.

Shaved

A couple weeks ago Jon took a razor to Jacob's head. Seems that that white blond peach fuzz wasn't going to fall out with the chemo. It didn't look like healthy hair though, so Jon polished it off. Jon has also taken a razor to his head (and yes it's red all over). I think Jacob has been secretly waiting for Dad to do this. Jacob however won't tell Jon how cool it is that he would do anything to show how much he cares.

Another Day

Another Day. Another barf bucket to clean out.

Jacob's sleep sites: started on the family room floor. Wandered to his own bed around 2 a.m. After vomiting on his pillow and sheets about 5:30 a.m., he made his way to my bed on Jon's side who is flying home from Washington DC. Sometime in the morning his switched to the floor and then came back to my bed with no blankets.

He is easily chilled and is always tied up in blankets.

Today he scrambled his own eggs. The better part of the news is that he actually ate all the eggs and they haven't come back up - at least not yet.

Farewell Cytoxan

This is WEEK 10 on our treatment protocol. It's the LAST time that Jacob is scheduled to receive Cytoxan (the drug we hate most). Since we are crazy and since I don't tolerate change well we decided to do this treatment outpatient (instead of scheduled overnight at the hospital) at the clinic during the week that Jon is out of town on business. Yes I had plenty of pending anxiety, but we also were pleased that Jacob responded better last round and the biggest problems were efficiently getting admitted into the hospital and getting paperwork done to be released from the hospital.

So we arrived at the clinic just after 8 a.m., checked in, lathered the numbing cream, and waited for a bit. They have a new policy to meet fire code. They no longer take the patients and families to wait in the narrow corridor. They leave you out front at the trail head to wait (it really is a larger area with more chairs that was hardly being used). The only ones that stay in the back are going to access the port or going into the infusion room. That was us. We were there for "long chemo." He meets hydration requirements before cytoxan and then continues fluids through for eight hours while they administer to additional doses of Mesna (lines/protects the bladder).

Jacob was also filled with anxiety. He cried for a little that morning about not wanting to go, but he walked himself to the car and focused on his DS game. Accessing the port was the most dramatic. Apparently it was a feat last week also when Jon took him. All he has to do is look around the room at the tubes of saline to get his gag reflex going. He insisted on throwing up. The nurse looked at me like I was crazy. "You better get the bucket," I said. "He says he's going to throw up." I tried to calm him and convince him that he didn't have to throw up, but it's become his way to rid himself of the fear, anger, and frustration. When he was done, he sat up tall while she put in the 3/4 inch needle. He even helped fill the blood vials. She hooked him up to fluids and we were off to infusion room 1 to wait for the "super stat" blood results. Jacob took up a chair in front of the GameCube - he stayed there all day.

Counts were sufficiently up and Cytoxan (a one hour infusion) started at 12:10 p.m. along with the Mesna & Zofran. They didn't do the 5 minute push of Actinomycin-D until an hour later. Then we pee and wait on fluids until 4:10 p.m. for more Mesna. No Vincristine today either. The clinic closes at 6 p.m., so the idea was that we would move over to 2800 at the hospital to wait for the last Mesna dose at 8:10 p.m. and hydrate. The other solution was to hydrate more rapidly until 6 p.m. and then go home and give the Mesna orally at 8:10 p.m. It was nice to be driving home at 6:30 p.m.

Jacob admitted that he liked the treatment at the clinic better because is was shorter. The main reason he wanted to go to the hospital was to play Mario Smash Brothers Brawl in the play room. Once we were home I went and rented the game from the video store.

We are looking forward to THE BREAK in his treatment protocol. NO CHEMO weeks 11 & 12. In a couple weeks we go for CT scan & ultrasound. Week 13 we review all the results. If things go as expected, we'll continue with another 4 rounds of chemo (VA only). If something comes up, we figure out how to deal with it.

He got REAL nervous when he saw the syringe of Mesna. I don't know if he though I was giving him a shot or what. I mixed it with some berry juice, plugged his nose, and told him to drink fast. He claimed it "tastes good."

At 9 p.m. I was tucking the kids in bed & giving Jacob Zofran & Ativan.

At 9:10 p.m. Jacob threw everything up.

At 9:15 p.m. deja vou - I gave Jacob Zofran & Ativan & kissed them good night.

At 11:15 p.m. - Silly me - lifted/dragged/carried Jacob to go the bathroom. My neck & back ache are NEVER going to go away. He may be a skinny 78 lbs, but that's TOO heavy for me.

At 5:30 a.m. Jacob was going the bathroom & I got him to take more Zofran.

At 9:45 a.m. he threw up the delicious banana bread grandma made.

At 9:50 a.m. he ate another piece.

So far today he has watched Herbie Goes Bananas (which brought some laughter out of this exhausted kid) & part of Happy Feet. He slipped away to the big screen to play Brawl.