Warning: rough road ahead, expect delays

Its been almost 2 weeks now since my last update. I don't like coming on here with only bad news but since its been so long I guess I just need to lay it all out. Lily had her first bout of chemo in Phase #3 on May 27th. She needed about 3 days of anti-nausea meds and then seemed to be doing fine. That Sunday however she woke up with a UTI and we ended up taking her in the ER to get treated. She didn't have a fever or anything so the ER didn't draw blood. We were sent home (5 hours later!!!) with some Augmentin and instructions to watch her close. Monday she started to have diarrhea. By Monday evening it was pretty bad. I figured it was from the antibiotics, and since she was still eating and drinking fine, I wasn't too worried. (They always say at MSTI that if she gets diarrhea or is throwing up to call day or night.) At about 8:40 Mon. night the ER called and said that they cultured Lily's urine and found Ecoli and said that the Augmentin wont help, and they called in a different anitbiotic.

Okay let me back up just a little bit. Lily takes Septra (generic for Bactrum, an antibiotic) 2 days a week, every week as a preventive measure to help lower the risk of lung and intestinal bacteria. In the ER they told me that Bactrum is usually the best med to give for this but because she already takes it the bacteria may have developed an immunity to it. They knew that Augmentin wasn't the best thing for it but since its such a strong medication they decided to give it to her hoping that it would knock the UTI out. They did warn me though that there was a chance that it wouldn't help. 

Okay so back to Monday night. I had been watching her very closely with the diarrhea and still no fever but I admit, when the ER called me and said Ecoli I might have gotten just a little worried. I know now that is a pretty common bacteria for UTI but still, with Lily anything can happen. I called MSTI and talked to them and they didn't seem concerned so I just kept her tight under my wing. By Tues night the diarrhea was gone and so were her complaints of UTI. 

I guess I should get used to frequent panic and worry spouts but I don't think I ever will. Now that I know that the worst can happen I cant stop myself from going there often. Outside I may look calm and collected but inside I'm like freaking out! It like 0-60, no warm up. UGH!

Sooo, anyway, Lily is supposed to be getting chemo every 10 days. Since this time day 10 fell on Saturday they moved her appointment to yesterday. We went in and after getting her blood results back we found that Lily is once again neutropenic and we can not do chemo. I'm not completely surprised this time like I was last time but its still SO discouraging. I feel even more helpless than normal when we have to delay treatment. The good thing for Lily, though, is extra recovery time. I can tell everyday she seems to be willing to eat a little bit more and with that comes her energy and attitude. :) So, for now we are keeping her quarantined at home, with her new swimming pool and various art projects. We will go back in on Friday to check blood again and hopefully she will be up high enough that we can do chemo.

Okay so now for my epic confession. I think I also had a day of neutropenia. Not physically in my blood, obviously, but mentally and emotionally. All my emotion fighters were worn out and just gave up. Lily has not been sleeping well. Its not just, 'oh sit here and watch cartoons while I sleep and eventually you will fall asleep,' its like she is crazy, jumping on and off stuff and on me, getting into things, and maintaining this level of energy until 3am. Sunday I was just exhausted after 4 nights of this. I literally couldn't get up. It was too much energy to even breathe. When I was finally forced to get up (by the small one crying in the crib) I just sat on the floor and cried. Anytime Lily said anything I just cried harder. Then the guilt set in. How could I be so selfish and exhausted when the kid with cancer is the one up running around having a party? I'm supposed to be the strong one. The rock. But then the exhaustion set in again and I realized that I didn't have the energy to support even myself. And then the crying started again, and then the guilt, And so goes the cycle. Finally I called my sister and she talked me down. She gave me some excellent advice, one piece being drink more water. I realized that I hadn't really been taking very good care of myself. I couldn't remember when the last time that I drank water was and I hadn't been taking my own medication. I feel like I had hit rock bottom, a place I don't ever want to go again. So I am happy to report that with some much needed support from the hubby and some excellent advice from the sis I was able to get a good nights sleep on Sunday and wake up Monday with a strict schedule for my own pills, a plan to eat healthier and the intention of getting more exercise. (Still working on that one. Anyone have a bike stroller thingy I can hook to the back of my bike so I can pull the kids around?) 

So as this whole process goes on I'm learning that its harder to learn lessons when things are going great. Its in those moments of fear, and worry, and exhaustion that you come out of the fog with some clarity and experience a new life lesson. You hear it all the time, "You cant take care of her, if you don't take of yourself." I've learned that lesson twice now but the first time we were in the hospital and I had the nurses help. This time it was just me and the lesson really sank in. I will start taking better care of myself. Lesson 2. Just like how I look calm and collected out side but inside I'm freaking out, so is Lily. She is still 3 and she has energy and she laughs and plays and sings, but inside she is still sick. Its hard to believe with how good she looks, and I forget (or don't believe) but the blood doesn't lie. Despite her outward appearance, we still have to confine with caution. Wear a mask wherever we go, wash our hands like crazy and use sanitizer, avoid large crowds, and not allow the sickies to come visit, and, hopefully, by Friday we will be ready again to continue on with the plan. Until then friends, stay well!