The beach is officially a no-go! Her ANC has dropped even further all the way down to 100 and there is just no way they can let her travel under these conditions. Emma was sleeping during this conversation so she didn't hear any of it. I am not sure if she even knew the beach was truly an option so I haven't said anything.

I did have a great conversation with her doctor, though. You have to realize we hardly ever see her attending physician. And that's a GOOD thing because you know you're in trouble when she's close on your heels! We usually see her fellow or nurse practitioner because Dr. Jeha is busy with the new cases and the really sick kids. So the less we see her, the better, I suppose. However, it is really nice to get a conversation with her because she is so knowledgeable about Emma's situation and leukemia treatment in general.

We talked a lot about why Emma's counts are so low and the plan to bring them back up. She actually pointed to Thursday, August 13 on Emma's roadmap and said 'by this week I will have this under control.'  I told her, 'do you realize that is almost a year to the date since Emma's diagnosis?' Wow. Who'd have thought a full year later we'd still be struggling through the hell that is chronic neutropenia?? Not me! And it's not what they told us to expect so how could we have ever known?

So the plan right now is to take her off Septra, which is the antibiotic she takes Mondays, Tuesdays and Wednesdays to prevent a type of pneumonia these kids are prone to getting. They are putting her on one that I can't spell or pronounce that is less effective, but shouldn't be so hard on her bone marrow. My question was that Emma's been on this since Day 1, so why didn't it affect her this way all along? I remember specifically a golden age during Consolidation where her counts didn't drop once. Dr. Jeha explained that if Emma's bone marrow is 'tired' (and why wouldn't it be?) that Septra could be preventing it from recovering. So every time she catches a break and her counts come back up, Septra shoves them back down on Monday. Makes sense to me. I am a bit worried about giving the less effective drug, but with chronic low counts, the door to infection is wide open so the risk of just one type of pneumonia is the lesser of the two evils I guess. I hated to tell Emma about the switch, too, because she had just begun taking Septra in pill form (we cut a large caplet into quarters and she takes two quarters) which she much prefers to the liquid. In fact, if she balks at the pills I tell her, 'well let's go get the yucky pink stuff then' and she slams the pills back before I can blink. So now how do I explain that even though she mastered the pills, we STILL have to give her a yucky oral suspension (there's no pill form available, trust me, I asked!).

Dr. Jeha also wants to follow Emma very closely. We'll be bringing her in twice a week now so they can keep a close eye on her counts and adjust chemo as necessary to keep them from dropping too much. And if I understood correctly, Dr. Jeha will be handling her clinic visits for a while so she can monitor her personally. As freaked out as I should be because Dr. Jeha only gets the tough cases, I'm SO relieved that we're going to see some improvement very soon.

In the meantime, we just have to keep on trucking. I told Dr. Jeha that we have actually stopped dreading the Dex/Vincristine weeks so much because at least we know her counts are high and we can get out of the house. But that's just a double-edged sword, though, because she can't go two minutes without eating AND she's a total mess emotionally. Where the heck do you take a kid like that? I'd say a buffet would be perfect, but those are off-limits even with high counts because people sneeze on the food. Ugh.

And Dr. Jeha spent a lot of time talking about WHY they are so hard-nosed about things like travel. She talked about kids who got to the end of treatment and ended up in the ICU (the moral of the story being we're never in the clear until chemo is finally over), the kids who go to get on the plane for their Make-A-Wish trip and end up in the ER with an infection instead of at Disney World, and the kids whose parents aren't as compliant as Cal and I which results in the worst of the worst. I'm sure she's seen it all. And she kept saying that she could never imagine what it's like to be in our shoes, and I told her that I couldn't imagine what it's like to be in HER shoes! I finally told her, 'you are the one that has to watch kids die of this horrible disease on a regular basis. We'll do WHATEVER you tell us to do.' And we do. I gotta hand it to us as parents, Cal and I follow their guidelines to a 'T' no matter how much we whine and complain. We could just never forgive ourselves if something happened. I know how awful I am about wondering how Emma got cancer, so I can only imagine the misery I'd put myself through wondering what I did to cause a relapse or any of the other stuff that's too terrible to mention.

OK, no more morbid topics. That's enough for tonight!

New Buddy is doing well! The puffiness that resulted in the ultrasound the other day seems to have gone down. The triage nurse even commented that I was wrong about the needle size I told her to use and that she needed a smaller one, so there's the proof in the pudding right there. Wanna hear something kinda gross? When they did the ultrasound, they didn't find any puss, so that means no infection, right? WRONG. Emma's ANC and white blood cell counts are so low that her body does not have the ability to create pus. Who knew that nasty stuff served a purpose and that it's crucial we be able to manufacture it? Ack!

We had a ton of time between appointments today and Emma has to wear her mask if she's around other people, so we went for a long walk outside since it wasn't too hot. We made our way to the rose garden, which I had never seen (and I'm the only one, too! Did you know that SJ is on the route for Memphis tours? There were all kinds of tourist busses. Crazy!). Anyway, it was shady, cool and private with few people walking around, so we hung out there for about two hours total. When we were called to A clinic, we walked down the side walk toward the hospital entrance and they had the sprinklers on. So we ran through the sprinklers! It was great. Emma didn't even know what they were called. How sad is that? Almost four years old and never ran through a sprinkler. I can tell you which eager Mama will be up in Walmart this weekend prowling through the garden section for just the perfect sprinkler!!

And I have to say that in spite of it all, she is still the same great kid she always is. I can't tell you how many times someone stops us in the halls to say 'she is SO cute.' I guess it's because she just does not stop. Wow she wears me out. And I don't know what has gotten into this child, but for the past two days every time I tell her no she goes ballistic. And I tell her no a lot (Mommy, can I play with scissors? No. Mommy, can I bungee jump off the roof? No. Mommy, can I bake a cake by myself? No.) so this is consuming quite a bit of my time. I don't mind the fits so much, but when she cops a major 'tude and starts throwing things, screaming at me or blowing raspberries at me then I put her in time out. I think I spent the better part of my day putting her in time out. What's funny is that I told a couple of the staff about it (in an effort to explain why she was screaming bloody murder) and they all said, 'well it's the Dex.' Um, two weeks ago it was the Dex. Today is just plain all-out rebellion.

OK, I think that's everything. She has clinic again on Monday and then we'll see if her counts have come up enough to get her chemo. Hope everyone has a great 4th!