Week 2 of 22 is in the books. Door-to-door was four hours from leaving the house to returning home.
Today’s visit was nothing like last week’s non-stop, go-go-go. This week was ‘easy’ — the usual height, weight, and vital signs. Port accessing and labs. Physical exam and time for me to sit one-on-one with his oncologist (who I refer to as OUR oncologist because this is a whole-family thing). Chemo itself was only about 15-20 minutes long because this was one of his single med weeks, and he spent almost the entire time we were in clinic playing Skylanders except for his jaunt to see today’s Buddy Brigade pup. Today, as I will every week, I met with the social worker. I met the school consultant for the first time, and she’s supportive of helping me get a 504 Plan put into place for next school year. I met with Billing. Yay?
But today’s BIG thing was getting his Beads started. We began with the very beginning of this journey with his ED visit up through today. There are beads for the ED, for his two admissions and discharges, his initial surgery and sedation, his ultrasound, the CT scan, his port and sedation for that, the 3 chemo meds from last week and the one from today. There’s beads for the hospital, meeting with the chaplain, school consult, dietician, child life, the buddy brigade and childhood cancer awareness. We’re missing the social work and lab beads because they’d run out. We’ve been in this 26 days, and look how much has been done.
Everyone asks how we are. Honestly? We are fine. I am tired. I am drained. But neither is because of the diagnosis, the treatment, or the changes in our lives. Our medical team is AMAZING. Our oncologist treats me as a team member, with respect to my medical knowledge and my knowledge of my kid. They are available to me 24/7/365.
What we’re dealing with is an uncommon childhood cancer. 100% of Rhabdomyosarcoma cases are treated with chemotherapy. Joey is STAGE 1, GROUP 1 (i.e. the furthest thing from terminal possible). While we appreciate that so many have our best interests at heart, please let us do our own research and have our discussions with our medical team without the extra ‘noise’ of the endless suggestions I’m receiving via PM & text hour after hour, day after day. It’s tiring. It’s overwhelming. And, honestly, THAT is what is causing me the greatest stress.
If you want to help, please ask, but also please know that we have our reasons for turning down specific things. Please just ask before going into action. Trust me, the time is coming that I will need childcare for Connor for our clinic days and will be reaching out for help.
Moving on… Hey, check out his Beads (so far, with some missing)!