We are night #4 now, I can hear the alarms going off on the infusion as we speak. She gets 30 minutes to the topotecan and 1 hour of the cytoxan so we do Chemo for an hour and a half total, the rest of our day is spent hanging out while she is on a constant heart monitor.
She feels so crummy today, she was eating great this morning but it just has gotten worse as the day progresses. We were informed today that we could not be discharged if she was not eating they would have to supplement with TPN. So still hoping we are out of here on Wednesday but it's not looking likely and she still has tonight and tomorrow left on chemo.
I am surprised I even had time to write this Mallory will NOT let me put her down today. She just really needs me, and these hospital chairs SUCK, my butt hurts from sitting in it all day long.
Hi there, I am so moved by your story. My son is fighting brain cancer at five-years-old and I just can't imagine going through this with a newborn. We started a small non-profit to support SuperKids, just like Mallory. We have a Twilight Turtle and a Cloud B Sleep Sheep to send her, to bring her comfort and light. These toys helped Max so much after surgery and now in treatment. We asked the company for support and they're donating to us to give to you! www.maxloveproject.org. Please email us with your address so we can send you one (firstname.lastname@example.org).ReplyDelete
I'm just going out of my mind hearing of tiny babies born with advanced neuroblastoma (or any cancer at all), but it seems that we're hearing or more and more tiny ones fighting this horrendous disease. Would you be willing to allow me to share a picture of Mallory and a tidbit of her story on our Facebook page? (www.facebook.com/maxloveproject) I feel like if more people could see these images, we could do even more to touch hearts and raise awareness. We are so inspired by your fortitude.
Sending ALL of our love! Audra & SuperMax
ABSOLUTELY! I will email you soon! :-) We just got home so I'm going to play with my chick-a-dees and as soon as they are asleep I will get back to you.ReplyDelete