Post MIBG

I don’t think I explained what happened Friday when Ben was discharged from his MIBG therapy. My alarm went off at 5:45 that morning so I could start getting him ready for discharge. He had to have his Foley catheter pulled, take a shower to wash off some radiation and then head down to radiology for an MIBG scan all before he could have his PICC line pulled and his mediport de-accessed.

As the nurse was pulling his catheter, I averted my eyes (no 13-year-old relishes the thought of anyone doing anything to his “private area,” especially while mom’s hanging around) but with all the rules in place, it wasn’t feasible to simply step outside while this was happening. So, I looked out the window instead, just in time to witness the beautiful sunrise as Ben was gasping – first in pain and then in relief – as the foley was pulled. This wasn’t the first time that I had to focus on something else while my son was going through something painful. And, I was quite certain, that he wanted no comfort during this part of it – especially from mom. My poor, traumatized 13-year-old.

As he showered, I changed his sheets and disposed of other items, so he could lay back down on a minimally radiated bed. His legs were wobbly after spending so much time being sedentary, so I hovered as close to the bathroom as I could in case he needed me. He didn’t. Then he got dressed in new, non-radioactive clothes, and waited for the MIBG scan. I took a nap while he scanned… I had been up more than I had slept the night before. Once Ben was finished scanning, we went over all the discharge rules. Again.

No close contact with anyone through August 8. Must stay entirely separate from younger sister through 8/8. Must stay entirely separate from all children through 8/8. Must use disposable eating utensils, which must be disposed of after being held in isolation for one month to avoid violating radiation levels at our local landfill. All clothing and sheets must be washed separately. Must have sole use of a bathroom until 8/8 and the toilet must be flushed 2-3 times after each use. Must shower every day (this is probably the hardest to enforce.) And, for the Love of God, DO NOT PEE IN THE SHOWER! The radiation is excreted through sweat and urine… peeing in the shower would most likely dissolve his little legs off. Just kidding. I think.

So, I haven’t truly hugged my son for eight days. Now, I’ve gone this long without hugging him before, but it’s really freaking hard when he’s right in front of me and I can’t hug him. It was decided that Ben would stay at his father’s house since I live in an apartment and radiation can sneak through walls. Despite him emitting a fairly low frequency of radiation, it’s best to play it safe and keep him as isolated as possible.

The follow-up MIBG scan showed that the radiation had surrounded the cancerous spots and hopefully kicking the hooey out of those bad cells. It was noted, however, that radiation was surrounding a spot on his liver, too. There’s always been a spot there, but it was deemed to be ‘brown fat’ since it hadn’t grown or moved or done anything ominous over the past two years. The fact that it was surrounded by radiation suggests that it’s cancer. So, that sucks. But, at least the MIBG is surrounding it and hopefully forcing it to give up.

Stupid cancer.

Knowing that I would be hanging out with Ben today while Matt was at work, I took Madeline to a friend’s house for a sleepover since she can’t be around the radiated Bean. On my way home, I called Ben to chat. I told him I couldn’t wait to see him in the morning. He expressed the same excitement about seeing me. My emotions got the best of me and I apologized for his having to go through so much. He said, “That’s okay, mom. I’m glad it’s me and not you or Madeline.” I’m sure my face twisted up in an effort to not lose it, but I told him that I would take it from him in a second if I could. He said that wouldn’t be acceptable. Then I told him I loved him. It’s our little game to one-up each other during this exercise of expressing love… “No, I love you more…” and then I say, “No, I love you most…” and then he says “Not possible…” and I say, “Possible. Infinity.” But last night, he asked, “Please, just let me win this one. I need to love you more.”

So, I surrendered. I let him win. But just this once.

He is feeling optimistic that this therapy is helping. He said “It really wasn’t so bad. And maybe this is the answer, mom.”

Maybe this is the answer, Ben.

Hopefully, it is.

 

 

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14 Comments

  1. Dang you just know how to make the tears come – I know, there’s plenty of material in your life for that. Love you Sarah and Ben! My boys and I play the “I love you more but we make up crazy numbers like “a gizillion million” I can just picture you 2 … ❤

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  2. I have to say that you made me have the ugly cry face during this post! The part where u finally let him win….his hope for the future is inspiring and could teach us all a little something about faith…I love you three!!!!

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  3. Your report made my day! You both are an inspiration exuding strength and love. Praying that this recent treatment brings Ben to full health.

    Peace and blessings,
    Donna (friend of Ree Simpson)

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