Other Duties as Assigned

I woke up to the sound of thunder. I wasn’t sure if it was a dream or if it really happened. All I knew was that it was still dark outside, which meant I was being cheated out of some precious sleep. In moving myself from the bed to the couch to watch all the wonderful choices that 3 am television offers I decided to let the dogs out. A soft rain pelted me as I was standing in the doorway in my nightshirt. I live in an apartment complex and usually do not go outside in my night clothes, but I figured if anyone else was up at that hour they’d be as bleary eyed as me and not be too terribly offended by my oversized t-shirt. Fortunately, I saw no one. I just stood there, silently crying, and let the rain hit me as the dogs did their business.

As I came upstairs I heard Ben retching. Again. We’re only two days into this chemo business and it’s hitting him like a ton of bricks. I’ve had several people ask what his treatment plan is, so I guess somewhere along the way I haven’t described this process out loud. I feel like I’ve told everyone so please forgive me if you’ve already heard this information. Ben is receiving chemotherapy every day this week. We go to Children’s in the morning where he receives an infusion of Topotecan and Cytoxin along with lots of hydration and anti-nausea meds. We’ve done two days and have three more to go. This process is outpatient so we go home once his infusion is complete. Puking in the comfort of your own home is more tolerable than the hospital, I guess. Once this week of chemo is finished, he’ll go back to the hospital on Saturday to receive a shot of neupogen, which stimulates his white blood cells to grow. Chemo is famous for knocking down all blood cells – red, white and platelets. You can receive a transfusion of red blood cells and platelets, but white blood cells are another story. And, if you remember your high school science at all, white blood cells are what fights off infection and all that jazz. He needs them. With a compromised immune system, any little bug can make him super sick. So, the neupogen shot is necessary.

Then, on Sunday, he’ll be off to Camp Wapiyapi. This is a camp specifically for cancer kiddos and their siblings. Ben has gone every year since he was six with the exception of the summer of 2009, when he relapsed the first time. He LOVES camp. The doctors feel it’s important to not take this away from him and I agree. Each child has their very own companion and there’s a full medical staff there, who all know about cancer, so I feel okay in letting him go. I’ll be worried the entire time, but I want him to try to have fun. The bummer is that I’ll have to pick him up mid-week to get blood work done here in Denver. The camp is two hours from here, so Wednesday is going to be a loooooong day. Hopefully he won’t need any transfusions so we can get him back to camp as quickly as possible. I’ll do whatever it takes to make him a happy camper.

After this round of chemo, he’ll have 12 days of rest. Then, another round of chemo – same stuff – for another week. Once he’s done with that round of chemo, we’ll harvest some of his stem cells in case the MIBG therapy in Cincinnati becomes an option again. They will also re-scan him after that second round of chemo, so we’ll see if there’s any cancer activity at that time. The outcome of those scans will dictate what we do next.

So, How am I feeling? It’s like I’m sitting in one of those 1950’s scary movies. The type that buzzes your chair when you least expect it or rattles your bones as the monster sneaks closer. There’s no warning when bad things are approaching and it totally catches you by surprise. I wish I could say that there’s an element of fun to the shocks, but there’s not. This sucks. Plain and simple. None of this was in the job description. But some human resources person somewhere is laughing and pointing at the last line of the job description that states: Other Duties as Assigned. Suck it up, mom. This is part of the job whether you want to do it or not.

I’ll do whatever I need to do to care for my children. I will rub Ben’s back as he dry heaves. I will wipe his sweet face afterward. I will carry him through the halls of the hospital when he’s too weak to walk and no one can seem to find a wheelchair. I will snuggle closer when he says “I can do this as long as I have you by my side.” I will cry with frustration when I am rendered helpless in helping the nausea pass. I will comb his hair as the clumps start to fall out. And I will find the strength to calm Madeline from her fears: the fear that her brother might die and the fear that she’s not as important to us as Ben is. But I will not give up. I will not surrender. It’s all part of the job. None of these extra duties are listed. But I’m learning that I possess a talent in getting the messy parts done. I should be awarded a higher rank. I’m thinking I’m at least a Three-Star General at this point.

So, how am I doing? I’m tired already. But I know this is about endurance. I need to pace myself to win this race. Getting over the shock of it all will come soon enough and I’ll be ready to keep on going. I’ll be ready. I have to.

Because this is going to be for the rest of Ben’s life.

8 thoughts on “Other Duties as Assigned”

  1. Oh Sarah….tears running down my face….Ben and Mad are very lucky to have a mom like you. It says it all if he’s telling you that as long as you are there, he’s ok. I’m sorry you all hafta go through this again. Just know that I am sending all of the love, prayers, and good vibes to all of you that I have. So glad he can go to camp. I love you all lots.

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