Tuesday, August 11, 2009

Change is Good

Hey Guys,

I mentioned before that Sarah Sullivan came to visit me yesterday. Since she works for Children's, she's able to share a lot about what's going on "behind the scenes" - the parts of the hospital that the patients don't see, but that keep everything moving smoothly (well, as smoothly as a hospital can run!)

This morning, Sarah emailed my dad & I with a great article that had been published for Children's staff members. It's all about the changes the hospital is making to help things become more efficient, especially in the area of patient waiting times. My family has been in and out of Children's a lot over the past nine years or so (years of treatment and scans for Brian, and now myself...) and it's really great to be able to see all of the past changes occur, and even better to be able to see what the hospital wants to change in the future. I was so happy to read this article, because a lot of times you wonder if the people who run things even realize what the real problems are for the patients. I know for myself, the waiting time to start chemo is really frustrating - especially on my short treatment days. I've had to wait three hours for someone to write an order so I can get less than two hours of chemo! Now, I know that's still better than being an inpatient, but patients shouldn't have to wait longer than their treatment time to get the treatment started! It was really refreshing to see that Children's recognizes that wait times are something they need to fix, and have actually drawn up a plan to make that change happen! That's one of the many reasons I'm thrilled to have been taken on as a Children's patient!

Also, congrats to Children's for moving up from 5th place to become the 3rd best Children's hospital in the country! Woohoo!

In my world, I'm definitely reaching a point where the chemo's building up enough for the side effects to start getting a little worse... usually after this first treatment, I feel slightly crappy that evening, but fine by the time I wake up in the morning. However, it's 7:50pm and I'm still nauseous! Maybe I should start eating more bland foods... or some ginger ale! I've got some achy joints from the Vincristine, but nothing unmanageable - no trouble with stairs or anything, but I was a little stiff after the "Tour of Clifton" I gave my mom today. We drove around areas of Clifton she'd never really been to - especially the Gaslight District (so pretty!)

On a funny note, I'm definitely bald, but I'd say I've still got about 10% of my hair... and that 10% is growing... and growing... I'm going to have to ask my mom to buzz it off again, or it's going to start looking silly! My little chicken fuzz hairs that are left have gotten long enough now that they're starting to curl...

Finally, one of my friends posted this on Facebook, and I thought it was pretty funny/ridiculous, so I'm posting it here for all of you to enjoy. This guy watched every episode of Friends in one sitting - over 80 hours of TV! He broke the World Record for longest TV watching (or something like that...)

Lots of Love,

ps the Leukemia and Lymphoma Society is holding a Light the Night walk at Sawyer Point in Downtown Cincinnati on Thursday, September 24. I'd love to be able to get a team of family and friends to walk, so anyone who's in the Cincinnati area (no matter how well we know each other), please feel free to send me a message or give me a call and let me know if you'd like to participate! Find more details HERE... Thank you guys all so much!


  1. I understand how much painful this waiting is. But hospitals seem to be doing nice works and making it easier for you! Good to know!
    And this is a weird piece for info indeed! 80 hours in just single sitting!!!

    Hope you have a good day!


  2. Hi! Thanks for stopping by my blog. I am now following your blog. I was diagnosed myself in May of 2007. I am in remission now for 18 months. I understand the whole time for chemo thing. It was that way with me often. It was always such a long day. I didn't lose all my hair. I expected too but it thinned by about 50% I'd say or more but I didn't lose it all. I think the pregnancy hormones had something to do with it. It's nice to have found your blog. I'll be reading.

  3. congratulations on the remission! also congrats on the baby AND chemo at the same time - that must have been so difficult, but I'm happy it worked out for you.

    thanks for following me, and good luck with everything!