On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.
Saturday, May 21, 2011
A busy day
It would seem that the source of the fever has been found. Phoebe's very observant dad noticed some swelling around the site of her new central line, and since then it has been a flurry of activity in her little room. Doctors from our transplant team, infectious diseases, image guided therapy, thrombosis, and radiology have all been in to visit with Phoebe. After what seemed like a lot of back and forth between doctors, an ultrasound of Phoebe's neck and upper chest (where the line runs), our doctor arrived to tell us that the line needs to be pulled but that as long as nothing happens between now and tomorrow morning, they can wait until tomorrow. Because Phoebe has a history of clots, she takes a blood thinner twice a day. Going into surgery with a blood thinner on board is risky, so waiting until tomorrow and holding the blood thinners until then is thought to be the best and safest option for her.
Looking at Phoebe today she appears to be on the mend. She has been fever free all day, her heart rate is normal, her belly is less swollen, and we have even seen some smiles. Wishful thinking leads me to believe that the wonderful new cells have started to work their magic, but the doctors are hestitant to agree. They only refer to engraftment once white blood cells show up in Phoebe's blood test results, but say that the process of engraftment may be starting to take place - the simple fact that Phoebe's body is showing a response to the infection around her central line site is indication of some white cells in the blood (or at least I think so). We still have a way to go, and if Phoebe does have some new fighter cells, those tiny warriors are working very hard to help her to get better.
Tomorrow morning she will be going in for surgery to remove the infected line because the risks of the infection spreading to other parts of the body is high, and not a risk that any of the doctors are willing to take. Then they will wait for 48 hours before putting in a new central line, which will mean more surgery, more anesthetic, more risk. Because we are so close to the beginning of this journey, and Phoebe needs to receive multiple antibiotics by IV, have her blood tested daily, and also receive anti-rejection medications to fight against impending graft versus host disease, there really is no other option than to insert a new line. In the meantime she will need three peripheral IV lines inserted into various veins in order to give her medications, and access her blood.
I believe very strongly in the power of positive thought and energy, so I would like to ask everyone reading this to think about Phoebe tomorrow morning at 8 am when she will most likely be having her surgery. I think that with a surge of positive thoughts and prayers, sent from all around the world, it will be so loud and powerful that it will be definitely be felt, even if just by us and Phoebe, it will make a difference.