Friday, June 10, 2011

A Cure for Ellie...

It's been a good couple of months for Ellie. She escaped the winter time fairly well. She did get approved for the lovely synergis shots which I think helped even though it is pure torture to watch her get every month. They are thousands of dollars per shot so we were grateful that she was approved for a second year. We did a pretty good job keeping her out of public and I think that helped a bit. It was funny when spring hit and they got to see Ellie and Claire again. Neighbors were amazed to see them all grown up and "big".

Claire and the rest of us did not fair so well though. Claire had a double ear infection every month and her ear drum burst in April. Who knows if she will end up with tubes. Let's hope the summer gives her some relief. So far so good, knock on wood.

Ellie had her appointments at the end of May. Now when we go there, it is such a welcoming place for us. We ran into two of our cancer cuties before we got started. Then as we were checking in we ran into our heart buddy Mason. Our echo tech. knows us now by name. Barbara in cardiology, comes in every time to do our EKG's and blood pressures and Ellie knows the routine and is so very comfortable with it that she acts like a pro now. Is that a good thing or a bad thing that we feel that comfortable there. Anywho, the end result is that her valves are leaking a little less. Wahoo!! The only thing that worries me is that they didn't up her meds. And it seems like every time they don't do that, the next appointment, they are leaking more. We know that her valves will need to be replaced at some point, but the longer we can hold off the better.

On the tumor end, I have been internally torn on if her eye is worsening on the ptosis and miosis. (Drooping and pupil size). Ever so slightly. But enough that three people mentioned it to me without me saying anything. That was my cue to contact Oncology and we are doing a MRI on both her heart and tumor on June 15. Aughhhhhh! You know how I hate MRI's but I know it needs to be done to know where to go from here.

That leads me to this video that was done by the most amazing people. Thank you!! It is a video of all Utah kids with cancer. We know and have met most of the kids in this video. Please help us fight childhood cancer by joining our team. You can walk with us on July 9, 2011. Ten dollars a person, children are free. Or you can virtual walk if you can't make it that day. Anyway, we would love to see you all there. We would love to see any of you heart moms too:) Ellie appears a couple times in the video so look for her. Thanks again for all your thoughts and your prayers on Ellie's behalf. We feel them and are so appreciative of them!

Welcome. I am participating in The Salt Lake City, UT CureSearch Walk to raise funds for children’s cancer research. I have pledged to raise money for this devastating disease. With your help, I know that I can surpass my personal goal. Please donate. It will make a difference.

The CureSearch Walk celebrates and honors children whose lives have been affected by children’s cancer, while raising funds for the lifesaving research of the Children’s Oncology Group. This group of medical professionals treats more than 90% of children with cancer at over 175 hospitals in the United States. These experts provide world-class care in communities across the country.

Every day, 35 children are diagnosed with pediatric cancer–7 of those children will not survive. Cancer is the #1 cause of death by disease in children. Although the cure rate is now 78%–up by 30% in the last 20 years–it is not good enough. Our goal is a 100% cure rate.

Questions? Contact


  1. It was really fun to see you this weekend and catch up on all the latest. Your family is darling! Keep us posted with Ellie's progress and feel free to email or call me anytime. :)

  2. We are praying for good (or at least not bad) news to come from the MRI! Keep us posted!

  3. Becca:

    My name is Nick Tierney, with HealthTheater Networks. I just discovered your blog Bless Her Heart: A Cure for Ellie, loved your content, and thought we might have something to contribute.

    We are a top health video production company with several videos about different aspects of cardiology--all featuring real people telling the story of their personal battle with the condition. In fact, we just filmed a few new powerful stories on heart murmurs and arrhythmia in teenagers.

    Feel free to check out my favorite one here:

    We are interested in syndicating these videos through our player to your website, for free, in exchange for the targeted visibility that exposure on your site would provide.

    In addition, we recently attended the 59th Annual Mended Hearts Convention, and we are interested in growing our library of video content with more CHD stories. If of interest to you, would you be willing to share video content about your story with us?

    If interested, could we please schedule a short call to explain further?

    In the meantime, feel free to FOLLOW us on Twitter: @HealthTheater and LIKE us on Facebook:

    Thank you,


    Nicolas Tierney
    Dramatic Health
    45 Rockefeller Plaza, Suite 2000
    New York, NY 10111
    Office 212 332 7132
    Mobile 203 912 6179