After extensive research, prayer, and talking with doctors/nurses and other families, we’ve decided to go with the Portecath central line instead of a Broviac. Everyone seems to agree that this is a wonderful option for Emily, and she is very excited. Presented with the two choices, she decided that she wants to be able to take baths and go swimming, and she is “going to be very brave,” when she has to get poked each time she’s accessed.She proved this last Friday when we went to the Infusion Room for her IgG transfusion. She had to have an IV put in her hand, and she did so great!! Just a little bit of crying with the needle poke, then she was fine. She didn’t even move her hand. Her nurses were so impressed, and when she was done they presented her with a reward they had purchased the night before -a sparkly, glittery My Little Pony. Emily thought the poke was definitely worth it 😉
Her surgery is scheduled for Thursday morning, and she’ll have her Port accessed for the first time when she receives her monthly spinal tap and chemos next Tuesday. Please keep her in your prayers during the next week, as she will have to be very, very brave.
Today we got to meet with her oncologist, Dr. Ducore, and I had the chance to ask him my burning question: Since the discovery of her Minimum Residual Disease (MRD) in March 2012 (which is one of the reasons she is being treated High Risk), have there been any further studies, trials, or outcomes showing that following the High Risk protocol has increased her chances of not relapsing, as hoped? He shared that unfortunately, because the importance of MRD has only just recently been discovered -within the last couple of years – the studies and trials testing how well kids with it respond to a High Risk treatment will still take another 5-10 years. Emily is ineligible for the trials, but she is one of the first patients, who presented with MRD, being treated with the more intensive High Risk protocol. So we won’t have any answers during her treatment. The good news, however, is that High Risk kids have a tendency to relapse earlier in their treatment, usually within two years of being diagnosed. If they don’t relapse in that time frame, they then fall into the Low-Standard Risk groups and have just as good of a chance of not relapsing as everyone else. Emily is 18 months into her treatment and doing well!! And, ultimately, as Auntie Plum wrote when we first learned of the MRD, we are trusting God for a 100% chance of not relapsing 🙂