No word on the marrow yet, still waiting.
This morning brought lower counts again. Her platelets were up to 83 due to that infusion yesterday. Good thing because she’s bruised like a red-headed stepchild. The red blood they gave her on Monday didn’t hold for long because she dropped back down to 8.5 from 9 yesterday. Her ANC went down to 120. No real improvement in that department.
Her mouth is much better, her tongue and throat sores still hurt but the lips are healing. I assume that means the virus is getting under control. Still no more fevers and no growth in her cultures. YEAH!
Her chest x-ray came back with definite signs of pneumonia, her cough is hacky and painful. Poor kid, she’s just a constant ball of discomfort. They’ve got her on some Zithromax antibiotics to work on that. I’m worried that with two antibiotics and such a broken down body she’ll start a yeast infection, but we’ll deal with that later if it becomes an issue.
Last night at around 11 PM it occurred to me that she hadn’t peed since 2 in the afternoon. Sam, my new favorite nurse, came in and we did the good cop-bad cop routine on Peyton. Sounds mean, but the only alternative to getting her to let herself pee was for her to catheterized, which is really not a fun option. So, there’s me being the “You HAVE to pee, even if it hurts your booty, because if you don’t they’re going to stick something up your wee-wee and that will REALLY hurt.” Nurse Sam is all “It’s ok to pee, Peyton, you can just go right here in your pull-up or we can get a potty right by the bed, or you can even just stand up and pee right in this bowl! Does that sound good? Can you go now?” I know she didn’t want to pee because when it hits the sore part of her bottom it burns, but her belly was hard as a rock and about to burst. After 45 minutes of encouraging, cajoling, bribing and threatening, she did finally pee and now everything is flowing fine.
She ate a little bit this morning and was so happy to see Daddy walk in the door. Peter drove down late last night to work from home, so at least the kids can have some constant in their lives while Peyton and I are stuck here. Please pray for his job to be understanding of this situation. When Pete took the job Peyton was sailing along and although the threat of these health issues are always there, we were stupidly confident that all would be fine. I’m just concerned that his job won’t be willing to have him drop everything to run home when we’re in a situation like this. Our plan had been for Grandma to be here if something like this happened, but she is so sick right now as well, so she needs her own rest and recoup time. We are so grateful for the many offers of help and to take the kids, but we just want them to have some normal in their lives when we know they’re nervous and scared of the sudden onset of Peyton’s illnesses. With all they’ve had to see and know about this disease, they can’t help but be anxious as well. Peter’s here now to help them understand what’s going on and to be there for them while I’m here with Peyton.
I got the most awesome email last night from Brooke. She told me they didn’t want any big deal made, but how can I not? Brooke works for the PR firm that does pro bono work for the Pediatric Cancer Foundation and she’s been following the site and Peyton’s story. If I never knew anything more than she works for the PCF for free and is driven to help raise awareness of cancer, she would always have a special place in my heart. But she’s really going above and beyond to make Peyton very happy while she’s so very sick. Disney’s Princesses on Ice are going to be at the Forum this weekend and they had donated tickets for some of the cancer families. I was looking forward to a fun night with my girls with princess-mania. But obviously that’s not going to happen tonight. I was so disappointed to not be able to take them because I know it would be something they just loved. Brooke’s message last night was so sweet. She told me that after reading about how sick Peyton was she knew that we weren’t going to be able to attend the POI show and so her office wanted to put together a package of princess goodies for the girls that they’re going to have sent over to us. Seriously? Is that not just the best? Rachael and Peyton are going to be thrilled! Daddy AND princess paraphernalia? It just doesn’t get any better than that.
I have decided to start my own mafia. In response to the picture comment, it’s been funny and touching to hear all the responses. Honestly, I had so much other stuff going on that I hadn’t had time to get really bent out of shape too bad about it, but it’s really something special to know that if I ever get that person to fess up to their identity, there will be people across the country who are willing to take them out at the knees, Tanya Harding style! Really, I think if we started our own gang we’d be a scary bunch, forget all the L.A. big shot gangs, they got nothing on us. Could there be anything more frightening than a caravan of mini-vans/SUVs full of angry women who are defending a cancer child? Grown men quake at the thought.
Thank you all so much for understanding why Peyton’s site means so much to me. It has been my therapy, my tool to raise awareness and understanding and it has brought such amazing friends into our lives. It really touched my heart to know so many have taken something away from this site, that it had an impact on their lives. There’s a purpose in everything, God has a reason behind all of it, and maybe this is part of ours. Thank you all!
I am still riding pretty high on the good news from yesterday and you can only imagine how thrilled I’m going to be to get that “all-clear” from the reports today. My own joy is tempered by the knowledge that another sweet little friend has relapsed this week, his name is Conner Hernandez and he was out of treatment 3 years. He has a rare and degenerative chromosome disorder and he has been through so much and we are praying hard that his body will be able to handle more treatment and they are able to get him in remission again. I really hate to think how many of my friends have sat next to their children, waiting for results and praying for positive answers only to be devastated. There is a guilt in that, even though I know they’ll be happy to know that Peyton’s test are good, how can they not think “why not my child?” Please keep all these family in precious prayers, that God will keep giving them the hope and strength and perseverance to make it through each day. Keep our faith strong and our trust in Him complete.
f.r.o.G…fully relying on God
–Anissa
