It was a fun weekend in Lucy Bacott’s room at Cardinal Glennon. Lucy is like her happy old self, allowing us lots if time for visitors! A special last minute guest from KC was one of our angels, Jennie. Many of you know her, but for those who don’t, we have been best friends literally our whole lives, and as fate would have it, she has been an oncology nurse at Children’s Mercy in KC for well over 10 years. As horrible as this situation is, it is also amazing how we have been blessed with what and who we need. It felt like we were in grade school again as I nervously asked our nurse if Jennie could spend the night in Lucy’s room … she said yes!! It wasn’t at all like when we were kids (no truth or dare) but it was so nice to have company.
Lucy has “officially” been off fluids for several days now since she has been nursing so well, however her long list of IV medications left little room to roam. Our nurses have done everything they can to unhook her from the line but we were only getting a window of a few hours between medications. Luckily, her doctors have been dropping medications as she continues to do well! She is off all antibiotics (which accounted for a total IV time of about 10 hours a day, I think!) and is weaning off the steroids as planned. I haven’t requested Zofran for nausea in several days … So we got a whole day of Lucy unplugged!! The BEST part of the day – we took her outside!! For the first time in four weeks she got to breath fresh air and feel sunlight on her skin. Jennie had her camera along and treated us to an impromptu family photo shoot.
The docs (and we) were comfortable letting her outside because her counts are way up. Although we felt a little like we were smuggling her out because we had to cover her face with a blanket in the elevator and through the hospital until we got to the playground. That ANC number that we have been waiting for to hit 500 soared to 3,000 yesterday!! She was staying on neupogen, the drug to stimulate this good growth, until her ANC hit 1000, so needless to say she had her last dose a few nights ago. There is a 48 hour waiting period before chemo can begin, which puts her next round to begin tomorrow. So this rally of recovery is bittersweet, especially given the name “high dose” methotrexate, or as her doctor called it – “wicked high” she faces tomorrow. This particular chemo is obviously quite toxic, so the goal is to get it in then flush it out of her system as fast as possible. She will get lots if fluids and they have decided to put in a Foley catheter to prevent bottom breakdown, which would be likely due to the toxicity of this chemo. Mouth sores are the other nasty side effect that we really, really, hope to avoid! Despite nursing very well and eating cereal now, she still has not put on weight and is barely holding it steady. we can’t afford a mouth sores set back. Some good news – this chemo apparently isn’t likely to cause nausea or vomitting. She also scheduled to get TIT, which is the triple chemo in the spine.
So it turns out tomorrow is chemo day across the state, as Lucy “The Responder” resumes her battle on the east side and her grandpa, “Papa” stars chemo again as well on the west side in KC. Say goodbye cancer!