Talking to Raine About Daddy's Radiation

It was a quiet Monday night. We finished dinner and Raine was anxious to watch the tv show The Voice, his latest obsession (he is rooting for Noah). Rather than head for the living room, I asked him to stay at the table for a talk. I was flying by the seat of my pants in an attempt to tell him about Dan’s radiation appointment the following morning. Dan didn’t even know it was coming.

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First, I busted out his creepy puzzle that reveals all of the anatomy of our bodies. It lets Raine place puzzle pieces in layers–skeleton, organs, muscle, and skin, as well as the clothing worn on the outside. (Made by Hape, you can find it here.)

As he put the puzzle together, I told him daddy would have a doctor appointment in the morning that would be radiation for his brain. We looked at the brain piece of the puzzle and I said it would be like super cool lasers as medicine for three places in daddy’s brain.

Second, I had him look at our Kimochis® emotions. (You can find them here.) This is the first time I used them and it went really well. First Dan and I picked ones that showed our emotions about the procedure. Then Raine chose Scared, Shy (he had it equated with feeling uncertain) Grateful, and Loved.

Third, I asked him to help me think of ways that we could help him with his emotions. We made a list for each one:

Scared – Have daddy tell him all about it when it is over and answer any questions Raine has.

Shy – (Uncertain) Hugs before school.

Grateful – Make a thank you card for the surgeon.

Loved – Hugs AND kisses after school.

He made his card for the surgeon and then spent a solid twenty minutes in a competition of throwing the plush emotions from the dining room to the front door as far as he could.

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On the way to school in the morning, Dan sent us pictures of him getting ready for radiation. Of course Raine wanted to know if it would hurt. We told him no. (The pins Dan would have drilled into his skull would actually be one of the most painful things he has ever experienced. But would you ever let your kid know that? Nope.) We tried to emphasize daddy was fine because he was smiling and looked a little silly. Raine was still scared for Dan, and about it hurting. He told me he hopes he never has radiation. I agreed that I hoped I never would, too.

So the photo backfired…Later that day, I asked Raine how long he was scared or worried and thinking about daddy while at school. He honestly informed me that he did all morning–until his favorite time, recess and lunch. However, that night, even with Dan in bandages all over his head, Raine felt ok because he knew why they were there, Dan answered all of his questions, and Raine received lots of hugs and kisses from mommy.

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Raine is 6. He is very aware of how we act and what we talk about when we think he isn’t listening. He is picking up more references to cancer–particularly during the 2,000 commercials about cancer drugs during one episode of The Voice. Dan and I had the equivalent of scanxiety x 1,000 leading up to radiation and everyone can feel that–even Rocco, who paced and howled more than usual.

I want Raine to know when Dan is having treatments and help Raine understand what will happen. I want him to be prepared. I want him to feel included. This is big stuff, after all. Big stuff I would rather he not have to deal with–but this is our family and our journey.

Our 3rd CT Scan

Today we discussed the results of Dan’s 3rd CT scan with Dr. Duffy.

To recap, the very first scan introduced us to NSCLC Adenocarcinoma in all its glory–to me, what looked like splotches of ink and dark blobs inside his chest. Our 2nd scan was the first scan to tell us if “IF” his initial chemotherapy rounds were providing effective treatment. We were pleased to discover –Yes! Dan’s tumors were either stable or reduced in size, including his primary tumor in the left lung. Of course, these are always the results we want to hear! The alternative would be that there are new tumors or existing tumors have grown. The week leading up to a CT scan is torturous for me. I don’t actually even realize it until the few days beforehand (and then I stop being able to fall asleep and notice I am irritable and nervous). It was pure relief to hear today that the cancer is stable. Thank you to everyone for all of your encouragement, positive thoughts, and prayers. We are fortunate that there is no evidence of new growth or resistance to the treatment.

At this point, the reality of his illness is really sinking in during day-to-day life.

Just the last three weeks, we have had to deal with the side effects of his steroid use from his brain inflammation, and the side effects of weaning off of those steroids. He is three weeks past tapering off the steroid, but it is only now completely leaving his system. Combined with very aggressive chemotherapy, it has become tough. He has suffered overall muscle fatigue and especially weakened thighs, resulting in a few moments where he collapses. He has very frequent dizzy spells when standing, so it takes more time to move about after sitting for more than 20 minutes. At this point, he has lost nearly half of his normal blood volume (and is therefore anemic, awaiting a blood transfusion once he reaches the safest level to do so), suffered severe constipation always the two weeks following each treatment, and endured increasingly extreme fatigue and a reduced/limited appetite. On the bright side, we are grateful that his throat sores and thrush have been easily treatable, and that he still has an appetite for much needed nutritious food – fruit, juice, vegetables, and a few animal proteins that will help replace the muscle mass he has lost.

Together with his doctor, we decided to continue two final rounds of this chemotherapy, for optimal results. “Optimal results” continues to be —No new growth, stabilization or reduction. His particular cancer loves to grow and spread quickly like wildfire, and Dan’s genetic mutation (ALK) particularly loves to go to the brain. It is quite The Beast! But so far, treatment is disrupting those plans and our hope is to see a good scan again in 6 weeks and then move Dan to maintenance chemotherapy–kind of like a low grade version of what he has been taking that will work to keep the cancer from progressing. Some stage IV lung cancer patients can have successful maintenance therapy for as much as 12 months on just a single infusion drug –pemetrexed, and this should be the case for Dan as his ALK mutation historically responds well to pemetrexed. Again, that is our hope! And even beyond 12 months! Go Dan! 

We know that the next 6 weeks of treatment on the current chemo (including cisplatin) will be rough, judging by what seems to be a cumulative effect over the past three months. However we are also hoping that the side effects of the steroid will subside. Overall, we do expect him to continue to have the severe fatigue and some discomfort intermittently. His left lung that harbors the primary tumor is still full of fluid and the lower lobe has collapsed. We will have the fluid removed soon and also have surgery to prevent fluid from accumulating again. That will help his breathing and reduce his overall discomfort and risk for infection or complications in his lungs.

We feel like we are in a home stretch now that we confirmed his final two rounds of this chemotherapy treatment. It is going to be tough but we are looking forward to the end result—Getting him on maintenance therapy, seeing his lungs healed from the clots and fluid, and normal, healthy growth of his body’s fast growing cells so that he can enjoy food again and have energy to play with Raine and work more again! I will be calling upon our local helpers much in this next phase, so please use our Lotsa Helping Hands site (sign in to see our calendar of needs). If you haven’t set up your account yet, please do!

Thank you again, to everyone who has us in your thoughts. It matters. It helps. Soon I will share more about that. For now, I am off to bed with the wonderful gift of relief and joy given our results today.