22

I haven’t really posted much during #childhoodcancerawareness month because my mind has needed a bit of a break from everything.

So much so, that between treatment & Roger starting a new job next month we picked up and drove to Minnesota to see family we haven’t seen in over a year… We can’t fly. It’s too risky with all those germs. Of course, oncology needed to know that we would never be more than an easy drive to a major children’s hospital. Our map was dotted with some of the best children’s hospitals in the country, never more than a couple of hours away, and our destination is about half an hour away from Mayo, so our trip is a go! Into the car we go for 1,100 miles with both babies, the husband, and the very excited dog.

I checked Wesley’s temperature at every hint of potential trouble. My anxiety and worry never went away completely, but being back in the arms of my mom, grandmas, and great grandma for a whole week allowed me to calm down and relax quite a bit. I napped daily. Sometimes twice. Wes was really able to let his guard down and have a really good time. He bonded with cousins (“friends”), drove a tractor, my car (yes you read that right), baked bread with Oma, went on a hay-less hayride, adopted my uncles as honorary grandpas (one can never have too many!), ate so many French fries & “Hulk” cakes (we make pancakes a lot and recently he’s determined that they be green), bossed Archie around, and very excitedly showed off his new baby sister to his Great Grandmas Jeanette and Gloria, and his Great Great Grandma Marjorie.

I wasn’t sure if Ruth was ever going to meet the amazing woman she was named for, but that pipe dream became a reality for which I’ll be grateful forever. Ruth smiled, laughed, and brought so much joy everywhere she went. The light beams from her soul. It’s really something else. 💗

Being with family, seeing my kids and husband bond so much with loved ones, and really live life for a week, is exactly the break I needed.

But now we’re back.

Back to chemo, sedation, steroids, suppressed immune system during flu season, side-eyeing anyone with a sniffle or a sneeze. Back to seeing all of the kids on the 3rd floor of CHOP and elsewhere fighting so hard to survive this thing that’s trying to take them away from us. Back to daily news of another bright young soul robbed of their future. Another tiny casket, or long term effects of chemo, or secondary cancers caused by the treatment that kills the first cancer.

So. Many. Relapses.

It’s all too much. If it’s not in your face, then it’s hard to grasp. Even if it is in your face it’s hard to wrap your mind around it.

These kids go through so much. So do we, their parents. Their siblings. PTSD is real and everywhere.

Something that stuck with me today was the fact of the day for Childhood Cancer Awareness Month posted by a cousin who lost her amazing daughter, Marlee, to rhabdomyosarcoma. Today’s fact was that most #PediatricCancer patients are sedated more times in their first year after diagnosis than most adults are in their entire lives.

Wesley, in less than a year, has been sedated 21 times.

He’s scheduled for another lumbar puncture (spinal tap) on Wednesday. This will be the 22nd time. He’ll be NPO, get speared in the chest to access his port, have blood drawn and tested, and if all is well he’ll have chemo injected straight into his spine, have spinal fluid drawn and tested, and have an infusion of the chemo that causes him debilitating pain, constipation, and neuropathy. Then he’ll be de-accessed, select a prize out of the treasure chest, and we’ll have to beg him to go home because the toys at CHOP are far superior to our toys at home.

I feel like the last 11 months is somehow a nightmare that I wish never happened, and then on Wednesday we’ll get thrust back into it being our reality.

We’re the lucky ones, and we know it, but it still sucks. Childhood cancer sucks.