We have now begun Phase 3 of 4 phases of the most intensive chemotherapy treatment. Half way through the roughest part and Piper is still in remission and doing well. We were at the CHOA clinic yesterday at 8am for a triple interthecal lumbar puncture, and doses of two chemos called Danuorubicin and Vincristine. The triple interthecal targets the central nervous system with 2 types of chemo and hydrocortisone. The nurses have her sedated while they do this and she did wonderfully as she always does. We were supposed to go across the street to CHOA afterwards but we had to wait for a room to be made available...Aflac only has 20 and sometimes it becomes a very full house. We didnt make it over here until 6:30 and Chad spent the evening with me settling in before leaving to sleep some before work today and being Mr Mom to Linley.
This morning came quickly, although we both slept well. Piper was up at 7:30 and has been a little fussy at times. She hasnt been napping very well, but the nurse gave her some benedryl to help her rest. And we are (always) having problems with her catheter. She leaks no matter what, every time. They put it in her yesterday while she was sedated while doing the triple interthecal because Daunorubicin is very red and very strong. Her urine in her catheter bag is pink as are her tears...we want as little of that on her bottom as possible...and it is such a pretty little bottom too. Pray the catheter quits with the shenanigans and hold up. She had a dose yesterday at clinic and another today at noon. Hopefully it will be cleared out enough tomorrow to take it out without concern of harm.
I am tired after just one night here. My best friend wanted to come help me out this weekend but had to cancel at the last minute because of a cold...and I miss her. Its rough being up here but at the same time I feel very cared for. And its not like Piper is allowing me to sit around and think about anything for long anyways. Apparently they have had 3 new leukemia daignosis in the last 4 days. As a "weathered and experianced" mother of a leukemia child, I feel so much for them. I was walking with Piper (as I do all day, every day) and I passed a grandfather in the hall crying. He was trying to collect himself but was failing and as I rounded the corner and walked away my heart began to break for that family and began to cry. I hope none of you know the pain we feel. The way your whole world becomes derailed and you have so many questions and so few answers and children at home who miss you and bills needing to be paid and surprisingly at some point it becomes do-able. And the only way to get there is to muddle through the first few days and weeks and pray and hope that other people love you enough to take care of the details. I cannot explain how sad it is. When I watch new patients and families go through this it brings it all back and I cannot believe we have made it. But I am not foolish enough to think that it was us alone who did it. Its all the prayers and its simply time. Ive said it before but I will not make it until tomorrow without your support and my God. Thank you so much...and when you pray for Piper pray for the new patients and their families.