Wednesday, June 15, 2011

The First Half...

Phew! Today is over and we made it. I get so worked up over these MRI's. I think it's just from her going under general anesthesia, because we are well aware of the stunts that Ellie has pulled on us. They usually have us go through same day surgery due to her history. It makes for a really long day! We happened to be sitting by a family that was getting ready for an open heart surgery. I could see the anguish in their faces. It made me flashback to those times we were anxiously awaiting Ellie's surgery. They asked us about her heart surgeries. I didn't tell them about how Dr. K came in twenty minutes after starting a six hour procedure to tell us that they were aborting the surgery because her heart stopped and they had to revive her. I leave some details out sometimes for the sake of others. I wanted to make there pain go away and make it all better for them because we've been there.

I laugh because every time Ellie comes out of anesthesia, we never know what we are going to get. Angry and hysterical, so sleepy that she can't wake up, giddy or sad. Today she was sad. But she seemed to snap out of it faster than she ever has. She ends each time with on a high though. She runs around like the Tasmanian Devil until she literally just crashes. From every hospital stay, she gets on a mania. It's hilarious! Her blood pressure was really high afterward and her heart rate was in the 180's at rest. They were really concerned but because they had us hold two of her doses to get a true blood pressure reading, they felt like we could go home if we got her meds in before we left.

Good News... we got a call from Oncology, and the preliminary results of the tumor is that it is the exact same size as the last scan. We were really worried that it was growing from her eye drooping more. They used the word Stable which is good. I would like to here N.E.D. which stands for No Evidence of Disease, but hopefully that will be in our future. We will be meeting with Dr. Lemons next week to know further. We will her from Michelle tomorrow because Dr. Everitt is out of town. Wahooooo!!! I think I will be able to sleep tonight.

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.

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