Sorry it’s been so long since my last update. Things have been busy. Taking care of Roxy, watching Brie, going back and forth to the doctor, cooking, and keeping the house clean is more than a full-time job (and I have my mom here to help me most days and I have dinner delivered three nights a week most weeks). In any case, it’s bed time before I know it most days.
Things have been good since my last update. We came home from the hospital a day earlier than we thought we would. Roxy’s fever went away, her blood cultures were all negative, and her blood counts came up so they let us leave. We were supposed to go back Friday for overnight chemo. but her platelets were too low so we got to come home and we had a great weekend! Roxy didn’t have to get any shots (she normally has to get a neupogen shot every day to boost her white blood cells) and since her counts were good she had energy and was able to play outside. It was great!
But, all good things must come to an end. Yesterday, we went back in for overnight chemo. The combination of chemo drugs they give her for the overnight aren’t as bad as the ones she gets during the 5 day stay, but they still make her feel yucky and kill her blood cells. So, now we are back to the “wait and worry game.” Her blood cell counts (white cells, red cells, and platelets) will start to drop tomorrow and continue the downward spiral through the weekend and early next week. That means we have to worry about fever again. The problem when cancer kids get neutropenic (meaning they have pretty much no white blood cells) is that they run a serious risk of getting a blood infection. Any time Roxy gets a fever over 100.4, we have to head immediately back to the Cleveland Clinic – even if it’s during the night – we get admitted to the oncology floor (no ER’s for us). As soon as she is there, she gets blood drawn to go for cultures at 24 and 48 hours, gets a flood of IV antibiotics, and has her vital signs constantly monitored. For the kid with solid mass tumors, blood infections are the biggest and most serious concerns.
Last time Roxy had a fever her cultures were all negative. Only 1 in 10 cancer kids admitted with a fever have something that can be identified. Most of the time, it’s something viral or unknown. Viral infections are also serious since Roxy doesn’t have the immune system to fight them off, but they aren’t as serious as an infection in the blood. I hope this explains why I’m so vigilant about not allowing Roxy to be around anyone during her weakest times. It just isn’t worth the risk. We might not even be sick because our body has fought something off, but Roxy could pick it up and end up with a fever and a week in the hospital.
Hopefully this time she won’t get a fever. Unfortunately, the longer we go with chemo, the weaker she gets and the longer it takes for her cells to regenerate. The nurses say that the bone marrow gets tired and I think that’s a good way to put it.
I’ve noticed lately that I’ve been getting a lot of “awww – I’m so sorry” and very sappy, sad posts, comments, messages, and texts. I know that everyone feels badly for us and that this is very sad – trust me, I know. But please remember that the outcome is good and that we are all VERY positive about everything. I appreciate that people are sorry and sad, but those posts just make me sad. I know everyone means well, but it just doesn’t help to tell me how bad you feel for Roxy or me or anyone. I hope that makes sense. I try to keep my posts as honest as possible. So few people know what childhood cancer is like that I want it to be real. I think that’s important. I don’t want to hide anything. I want people to know what this is really like. Please understand, though, that I’m not doing that for sympathy. It’s just the kind of person I am.
So, please keep sending positive things our way – jokes, funny things, happy thoughts. Thanks and I hope you are all well.
Lots of love!
Stacey

One comment on “It’s been a while

  1. Stephanie

    Keep fighty roxy!! Sending smiles your way:)