Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Saturday, March 24, 2012

Day 5 New Trial

Yesterday Emily completed the 5th Day of her new trial of the Nifurtimox trial with the 5 days of chemo. Although the chemo was completed yesterday, the nifurtimox will continue. She will continue to take the pill 3 times a day for 21 days, so basically the entire time she is on the trial. So far she is taking the pill 3 times a day with no problems, but honestly she has always done really well at taking her medicines, so we are happy about that.

The last day of chemo yesterday went well...the anticipation was building for Emily of taking the line out of her port that had been in since Tuesday and she did so well keeping that line it with the port tape on top. The port is still taking some getting used to for all of us, we worry about hitting it when we pick her up because there is a needle there and hurting her. However, it is nice when the needle/line is out because the pool/water/tubbies are not off limits like it was before. Sometimes we wish that we had waited on taking her "Make a Wish Trip" to Disney until later but she had a blast then, so we are ok with it. It is still our goal to get her to the Williamsburg Great Wolf Lodge with her sisters this summer. With all that she is going through and continues to go through she deserves to have some fun with her sisters and us and her sisters enjoy some time away to have a blast. Hopefully we can get her there when counts are good and everything thing else. Anyway, I digress, after the chemo, it was time to get the line out and she cried as soon as they started to touch her she screamed and when I say screamed, it was a bloody murder scream and quite loud to the ears. It took a while to calm her down, but as soon as she calmed down she was fine, but all she wanted to do was to go back to the camper because she was tired.

Five minutes after being in the truck, she passed out asleep, it actually freaked me out because she was out so quickly and when I say out, she was out that Doug asked should we take her back to the hospital. She was out and her head was flopping, I was just really nervous about it as well as Doug. We got back to the camper and brought her in and she was awake laying her down and she seemed much more awake, so the screaming and all the medicines have just taken a toll on her body.

We have noticed the Nifurtimox is really doing a number with her sleeping with either completely passed out or keeping her awake. She can't sleep at night when it is time for bed and she has always been one of those to go to bed with no problem. The Chemo seems to have a few side effects as well, because she is still complaining that she has some tingling in her feet which is the neuropathy and the she isn't very hungry in the morning, but by lunch and dinner she is ready to eat and she eats well. Her counts are dropping a lot quicker than we thought they would, so we are watching what she is around (anyone sick) and keeping the amount of people she is around to a few.

This weekend, Nanny and Pop and the girls Aunties are camping in Luray, VA at Yogi Bear, we so wish we could be there with them, but it was a 6 hour drive from here in SC to there and I think honestly the drive would be way to much for Emily right now because we would then have to drive back here in NC for the hospital Monday Morning. Monday possibly will be another long day because Emily may need a blood transfusion.

Thank you to all the families and nurses at Levine's who have been incredibly nice. Doug and I really took note of how nice everyone here is like they were in Grand Rapids, MI. Everyone talks to everyone and it is just so wonderful! The infusion room was great and filled with great nurses which was wonderful for a long week with families who were so nice and talked to everyone.

Its been a very long week here in the NC/SC area, since we are staying in SC about 20 minutes away from the hospital. The traffic here is horrible and takes a good 30 to 40 minutes in the morning to get to the hospital and you can never depend on how the traffic will be. The traffic is much like Philly. Everyday for the past 5 days have been early mornings and long days at the hospital, but she has taken it well.

We are sending all of our love home today who is doing a Hubbel Family Fundraiser for Emily today by the mommies of Richmond Mommies, we wish we could be there! Thank you for all that you do it means so much.

For all the fundraisers that have been done for our family means so much as we continue to fight this fight with Emily! It means so much! Thank you feels so little with all that you all do for us and it we seriously cannot thank all of you enough for everything that you all do for us.

Thank you so much to everyone who has wished me a happy birthday on facebook and sent text messages today, it really means a lot. My birthday wish today is for Emily to be NED and that this trial does what it needs to do, the rid of this cancer.

By the way, we should be getting the Emily Bags next week to start making the bags for the newly diagnosed families at VCU Medical Center, please continue to send your coupons or items if you want to help supply the bags, so that we can help pay it forward to other families. It is important to us and Emily loves to give to others. Emily loves to make other people happy!

Thank you Aunt Karen for allowing us to stay next weekend on Sunday night for a one day hospital visit on Day 15. It really will make it easier not to have to take the camper and just stay the night and move forward.

Well going to spend some time with family and make some brownies. We will continue to keep you all updated on how Emily is feeling and doing. Thank you again for all of your love and prayers that you send and all that you do for us.

Remember to hug, kiss and love your kids and tell them how much you love them!


  1. Where is GOD in all this. Stop looking for sympathy. Your child would be healed if YOU BELIEVED IN GOD and what the BIBLE says about it. Jesus died so we could have life more abundantly - He died so that we would be made whole. What is wrong with all you people? You all give cancer so much power when all the power in in God, Jesus, and the Bible. Start believing more in God and His healing power and STOP giving place to all this cancer. You might find out that God is the God that has healed Emily and made her whole, NOT CHEMO or all your whinning and doctors that think they are the end all be all. Start believing God has healed your daughter. My God, where is your FAITH?

    1. Really? This blog is for family friends & people that actually care about a little girl fighting for her life, not your entertainment or a place where you can shove your beliefs down our, or other peoples throat. If you are as strong in your faith as you claim, why would you hijack Emilys page & not leave your real name (anonymous)? If you feel the need to to save the world, there are a lot of prayer groups on the Internet you could join ( you might have to register with your real info).
      My relationship with my God is a personal one. But when Emily says her prayers tonight, we will pray for "people like you", and by the way My God don't like ugly!!! Anonymous....OOOOOPPS, Emilys Dad