Update from Joe regarding Ella’s next steps!
Dr. Ginn has decided that the best protocol for Ella is topotecan and cyclophosphamide. We will go to clinic Monday-Wednesday for 4-hour infusions of topotecan. We will be able to return home each of those days. On Thursday, we will be admitted for topotecan and cyclophosphamide on Thursday and Friday.
Cyclophosphamide (or Cytoxan) can cause something called hemorrhagic cystitis (bleeding of the bladder) so Ella will receive a “rescue” drug called Mesna to protect her bladder. The nursing staff will be putting cotton balls in Ella’s diaper to check for blood in her urine. Ella received Cytoxan during her first 3 rounds and did just fine.
She will also receive IV hydration in the hospital in order to protect her kidneys. We will hopefully be discharged by Saturday. A 3 day admission isn’t terrible. The hopes are to do chemo every 28 days, but only Ella will dictate how that goes. Ella’s bone marrow has received quite a hit during these last rounds of chemo and she may take longer to recover her blood counts with each round.
Dr. Ginn weighed a few options when making this decision. Another protocol would expose her to a chemo that she had during the previous rounds, but that could take her hearing. Dr. Ginn said that we will see how she does and we could always adjust her doses of chemo or even switch protocols if we need to. Ella also has 3 more bags of stem cells frozen at University of Kansas Hospital and we could give her back her stem cells if her blood counts don’t recover like we want them to.
So, this sucks really bad, but we have some options. The goal is to keep Ella healthy and get her to radiation after her 3rd birthday. Dr. Ginn will be forwarding Ella’s medical records to St. Louis in preparation for radiation. We need to get the ball rolling so that everything is in place when we need to advance to radiation.
Ella has crushed cancer once before and she can continue to do it. She is so strong and will grow to be a healthy, happy adult! Cancer really doesn’t know who it’s messed with!!!