Random Thought Tuesday: Update Edition 11.30.2010

Some of you may have heard that we were in the hospital with Elena last night. We all caught the cold my dad had when my family was out visiting and yesterday, Elena developed a fever. Her counts were at 476 and a fever with counts under 500 is an automatic admit to the hospital. :( We called the on-call Oncologist around 9pm and she told us to head up to the Emergency Department. They drew blood for counts, blood cultures, started her on a powerful antibiotic, and did a swab for a VRP (Viral-Respiratory Panel). We were THIS close to being admitted (because her counts were under 500)- the Nurse Practitioner who we mainly worked with was getting everything ready and we were just waiting for her counts to come back and confirm the decision. But, when her counts came back, they were at 891 - which meant no admit! However, we were all stunned that her counts were up and that they had doubled in 1 day - when she was sick, too (which tends to eat up neutrophils which is what makes her counts high)! Once again- who knows where counts will be! When we think she's anemic or needs platelets, her levels are sky high. When we think her ANC will be down, it's up. When we think it's up, it's down. Who knows! We walked back in the door at 4am this morning - dead tired, but oh so happy to not have to stay in the hospital.

A random funny moment from the night: When our nurse was in our room talking to us about something, another nurse opened the door and poked her head in and hurriedly said, "The doctor said it's ok for you to breastfeed her." We all sat there in silence for a moment while the nurse looked at me and then at Elena and then back at me and then said, "Wait, what room is this?" Haha. Yeah, that was not going to be happening. It was a funny mix-up.

Even though it was a VERY long night, it was one of the best ED experiences we've ever had. Have I ever mentioned that I love Primary's? The doctors and nurses all knew exactly how to handle the situation (they had a protocol for what to do with neutropenic fever that they had down pat) and knew they needed to hurry things along with Elena because of her situation (immuno-compromised). We've taken Elena into a few other Emergency Departments for various reasons over the last few months and it seems like no one in those ED's even knew what immuno-compromised meant. It was like spinning our wheels. It always has seemed like after being there for 5-6 hours, the light FINALLY flipped on in one of the doctors or nurses heads and they would be like, "She's immuno-compromised?? Well, blah, blah, blah." Frustrating. Anyways, we were very grateful for how things went last night up at the ED at Primary's.

And finally, let this be a friendly reminder that "little things" like colds and runny noses and coughs can be very dangerous to Elena. We've been singing this tune all along, but it's easy to doubt it when you never see a problem. Wash your hands copiously (especially after coughing, sneezing, or touching your face), wear a mask, and better yet - stay away when you have any symptoms. We can't stress enough how crucial good hand hygiene is. We appreciate all those who are so vigilant and help us to protect Elena.

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Eric officially finished his Independent Study Classes yesterday! Well, we think... :) He's done all the work, now the question is, can he get the grade he needs for graduation. One of his classes was a KILLER math class that he was retaking for the third time. It was brutal again this time and we're still waiting to hear back on grades. Cross your fingers! :)

He worked so hard - I'm so proud of him! These classes were not going down without a fight - first, the Independent Study offices were closed down by "the storm" that everyone was freaking out about but that never delivered. Then, on the day he was going in to take his final, his (now former) employee went crazy on us and we had to get the police involved. Then, that same day or the day after, BYU campus flooded right by the Independent Study offices. And then yesterday, Elena was threatening with her fever all day and Eric was sick also. But we made it! We saw many little miracles along the way. Hooray for Eric! And hopefully, hooray for Graduation and the Master's program! (Hopefully, hopefully, hopefully!)

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We officially have our Make A Wish trip set in stone! (!!!) And boy, is it coming up fast! We are going to Disneyworld for a week from January 1st-7th! We are so excited! Holy cow, is this Christmas break going to rock! And be such a needed rest and rejuvenation! We can't wait! (That was a lot of [!] but can you tell, we're excited? :))

Hey and if you've been to Disneyworld and have any tips for our trip, pass them along! We've been to Disneyland three or four times, but never Disneyworld.

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Maintenance. It seems like Eric and I have to repeat to ourselves daily, "We are in Maintenance. Elena is in MAINTENANCE!" It seems like a dream to be at this point. Not that we're sure it's going to go like a dream, but that it seems unreal to actually be here. We were talking about something having to do with clinic and going to the hospital and we said, "Oh well, if we miss it this week, we can do it the next week." And then we stopped and said, "No we can't! We'll only be at the hospital once a month!" It's such a crazy thought. The basic deal is that Maintenance consists of 3 month courses repeated for a year and a half. She'll go to the hospital once a month for chemo there, take chemo orally at home every single day of Maintenance (and steroids for five days each month :(), and then have a lumbar puncture (back poke) once every three months.

Elena was supposed to start yesterday, but was delayed because her counts weren't high enough. So, we'll try again next Tuesday. This Christmas, our heads are definitely dancing with dreams of all we'll hopefully be able to do in Maintenance. We're trying to be cautiously optimistic, though, because from reading about other people's experiences we've learned, 1. that Maintenance is certainly no walk in the park, and 2. that it takes anywhere from about 1-6 months to get the right doses figured out (to keep their counts in equilibrium where they are high enough to live a little more normally, but low enough that you know the chemo is still being effective). We'll let you know how it goes! And now, get up and do a little happy dance for Elena making it to Maintenance! :)