Emily Update

Tomorrow marks Day 15 of round 2 of this trial. Emily finished the 5 days of chemo last Wednesday and then she had clinic on Thursday. We had thought it was going to be another quick visit, but Emily ended up needed platelets since they had dropped to 24 and was having a nosebleed. She hasn't had to get any transfusions for a while, so that was her first in a bit and she did well with it. Her weight also showed that she had dropped two pounds.

Emily was doing amazing...the girls had a blast at the Yo Gabba Gabba show on Wednesday evening. This was their first time ever doing something like this, so it was really great that they got to enjoy a night out. Thank you Laura for the tickets. Valentines Day was really sweet, and Emily was so excited to go out with daddy to get mommy a gift. she picked it out by herself from all the girls and she was so proud. It was really sweet, but mommy felt bad for not doing anything for daddy. I love you babe. By time weekend hit, Emily's energy levels completely dropped and she wasn't eating. Emily is back to the couch again and sleeping a lot. Enough to where the teacher has not been here Monday and Tuesday because Emily has been sleeping. She has daddy and I really concerned and worried....it's hard not to worry, but we are. She has complained of pains here and there, where we have given her Tylenol and it has helped. She has also complained of ear pain first in left ear and next night right ear and has continued to be right ear for a the past couple of days. We are hoping that the ear pain is just an ear infection. But we are also hoping that the sleeping a lot, low energy and not eating is from the chemo (even tho it is low dose and shouldn't affect her "quality of life" in this way) or a virus/cold.

Anxiety is definitely building with traveling to Michigan on Monday coming up. It's hard not to think about it and not worry about it. Wings of Mercy will be taking us Monday to Michigan and we will be home Thursday evening. The anxiety is extremely high with so many children who have passed in the last couple of weeks from neuroblastoma.

Like I said tomorrow (Wednesday) marks day 15. Emily will have clinic to check her counts and see how things look there and also receive the IV Avastin. These days tend to last all day in the clinic, so I'm hoping that today will be different. Also hoping that her platelets have come up.

So, in not thinking about the fears, the worries, and the traveling coming up, it's been a busy week and a very busy weekend coming up. We have been working really hard in organizing the house, cleaning and just getting it together...this weekend will be a busy weekend, we have Sue and Jojo coming into town, date night for daddy and Emily (In hopes she feels well enough to do so), making "Team Emily" bags for VCU newly diagnosed families, Saturday night the fundraiser for our family, and then Sunday Doug and I will be married for 6 years.

Sorry for not updating regularly but life has been busy. I really just wanted to give a quick update of how things are and where we are. Make sure you tell your kids you love them and hug them. Good night!

Scan Dates are Set

Updating has become really hard for me, so lately I've just been updating quick status updates on Facebook!! I will admit its the easy way out. So, I apologize.

Emily is doing amazing, the best we have seen her since she was diagnosed 2 years ago. While that thought of things happening and spreading in her little body that we can't see, it really is a huge fear for us, we have a lot of HOPE that all that is fear is just fear. We are hopeful that the regimen she is on is working. We see the happy, silly, creative and fun 5 year old and that is amazing in itself. Emily is 31.5 pounds and she hasn't been over her diagnosis weight of 30 pounds 2 years ago.

Emily started the 2nd round of this regimen she is on last week and the chemo started Saturday, so today is day 3 of the chemo. She really has been doing very well with the chemo, and we really haven't had any major side effects. We continue to do the homeopathic stuff at home to help her with her day to day, her blood counts and just feeling good. They seem to be working because her counts haven't tanked and the one we were most worried about, platelets never dropped below 20! So amazing.

We have a lot happening in the next few weeks. Someone we have never met but lives in our area won tickets to the "Yo Gabba Gabba" show and she gave them to our family for Emily. Emily will be so excited and we thank you so much Laura. Next weekend Emily and daddy have a date night and then Saturday an amazing man, who owns Wholesale Guitars and has a huge heart for others and other helpers are putting on a fundraiser for our family where there will be a raffle, giveaways, Hali Hicks and other talents there! We hope to see many of you locals there and please introduce yourselves if we haven't met you.

And last, scans have been scheduled for the last week of February. We are waiting to hear back from Wings of Mercy if they have volunteers for the 26th for flight out and the 28th for a flight back in. The Renucci House has been scheduled and we need to work out car rental as soon as we know if we have a flight. Scanxiety is getting close again and getting into high gear.
So with scans coming up, she has her fused MIBG/CT scan on Wednesday the 27th and we meet with Dr Sholler to go over the scans on the 28th. We ask that if you have any "Emily Gear" that you wear it on either of those days. Make sure you share your pictures of Emily Support on Emily's Facebook page (http://www.facebook.com/emilysjourney)... If you need any Emily gear, we still have plenty of Emily Bracelets for $3.00, just email me and let me know If you are interested in one. Thank you again for all of the love and support from all over the world and all of the amazing people out there.

Make sure you hug and kiss your kids and tell them you love them!!