So far so good. We successfully completed three home infusions of ARA-C on the “Four-ison’s Chemo Kitchen Counter”. They went just fine. I think the hardest part was time management. Since my mom is in town this week (yay!) I have been able to take advantage of more flexibility at work so I worked both Thursday and Friday. It was fine except trying to manage giving Maya the Zofran “30 mins” before the chemo infusion PLUS getting everything set up and not rush the process…well it was a challenge but one that we overcame.
Saturday was a bit more sporty. At least it was for me. Things were going well and we didn’t have to rush anything so I suppose it was the perfect time to have a complication. The complication wasn’t terrible and Scott reinforced that we did just fine but it did end with both Maya and Mommy crying in an embrace….on the counter. Ugh, that damn sticker. The Brava adhesive remover spray works really well except it doesn’t work very well on the sticker stuck on other non-human parts such as the actual port access. We carefully removed the sticker from Maya’s sensitive skin but when we tried to completely take the sticker off (so I have a better pinch and hold of the part actually attached to the needle!) things got a bit crazy. It might have felt a bit more exaggerated in my mind than it actually was but still. I cried. I see the nurses just pull through the sticker but I have done this exactly two times prior and I have very little confidence in myself. Scott was kind and supportive and had every confidence that I could handle this but he could also hear the panic about to take over. I was breathing. I was trying to focus. I was trying to pull the sticker off the disc without some how dislodging the needle. But all I could think of is “there is a needle in my child’s chest slightly exposed to the air!!! This is Exactly what we don’t want for very long at all!! We need to get it out!” We were okay but things needed to happen. Quick.
Scott grabbed the scissors quickly and started to sterilize them. He cut slightly on either side of the part that I grab. I was pretty sure I could just pull it up at that point so I did. It was done.
Maya was crying mostly because of the sticker…and I suppose because of her parents all up in her space trying not to lose their minds. I just hugged her and cried because I was so scared but also that we were done with that. I am grateful that we could continue with therapy with out even a weekend delay and that we didn’t have to drive to Reno for a very quick chemo infusion…but I never want to do that again.
Since her labs were actually pretty good on Wednesday, we won’t get her numbers again till this coming Wednesday. Her energy is amazing. She has no crazy bruising. I think we are okay. She might be a little bit more low key some days but over all, she is awesome. Sleeping has been our biggest issue…but seriously that is the story of her life. We started her on melatonin and…maybe it works a bit. Nothing like magic but I’m not even sure what that would look like.
The next couple of days we’ll just stay low. We anticipate a big drop but we actually have 2 more doses of oral chemo then a 2 week break. We’ll take it with whatever it brings. Drama or not. A giant exhale is in order. And perhaps some serious binge watching of the Olympics.
It has been sad to miss some pretty awesome events lately. Mostly weddings. Last weekend we had to miss my step-brother, Ryan’s wedding. My heart breaks to think that I could have been in the presence of both Ryan and Shaun at the same time. My world will feel like a better place when that actually happens. Also, congratulations to my awesome cousin Jeffery and his soon to be wife tomorrow! We love you and wish SO badly that we could join the celebration. Please know we’ll cheers some champagne for you tomorrow.
Till then USA USA USA. GO TEAM USA!
Love is Life.