Yesterday was supposed to be Day 1 of Long Term Maintenance. I had stopped thinking about it as anything other than a given. Unfortunately, that is not how Leukemia works. Shocked and disappointed are mild descriptions of my feelings yesterday. Her ANC plummeted to 350. I was simply confused, worried and sad.
What we thought was a reaction to sun (the chemo makes MJs skin very sensitive to sun) is actually, more likely, Parvo virus. It is a very common childhood virus that ends with a rash on the cheeks (and sometimes moves to other areas of the body). In immuno-competent children it is usually mild and no cause for alarm. With someone who's immune system is depressed, it causes bone marrow suppression. The test results confirming this theory will be in on Thursday or Friday. I hope it is Parvo virus causing her white blood cell count to drop. If it's not that, than what is it? Her Hematicrit and Platelets were back up to normal. If she tests positive for Parvo, she will receive antiboides via immune globulin injection Monday. Also on that day, we are giving another try at Day 1 of Long Term Maintenance.
So now we are in the immuno-suppressed sickness-rollercoaster. She contracted this childhood virus. Common. But with MJ, when she gets sick it causes her numbers to sink lower than most kids. If her ANC is this low it is hard for her body to fight it off. Her little body just doesn't have all it's boxing gloves.
Luckily, for her, the only symptoms she has are some sore throats and the facial rash. She is still in amazing spirits and energy. She is so, so happy to be home. We all are. She had a busy weekend full of birthday parties, visits with friends, BBQ's, grandparents and waking up in her OWN ROOM!! She is one happy princess.
In other exciting news, we have planned a vacation. I know! Crazy!! We spoke with the doctor's and they gave us the ok to go to Switzerland. Madelyn deserves it. Peter's family lives in Zurich, Switzerland. We travel there often and Madelyn loves it. We have promised her a stay in a castle, a visit with Swiss cows in the mountains and a chocolate factory tour. Her face was glowing.
To those of you who know us well... ya, I know. We couldn't just make it simple right? California or Hawaii. Somehow Peter and I manage to have a huge stress tolerance. It does come back and kick us in the butt at certain points.
Madelyn will visit the pediatric hospital in Zurich for a CBC, minimally, and possibly for chemo. This delay in starting Long Term Maintenance put a little wrench in our perfectly planned timeline. Oh well, we'll figure it out. This is her and our life. Cancer will not keep us from living it. Damn it.
Damn it. Been thinking of you.
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