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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Sunday, April 29, 2012

Round 2 New Trial Started

last week and has been completed...

Just wanted to put a quick update out there. I apologize there hasn't been an update in a good while. I have really pulled myself away from social networking as much as possible just from seeing and reading of other children passing or not doing well and from negativity that has been received.

Emily did have quite a bit of a hard time there for a bit prior to starting this next round, and it took her 2 weeks to get back where she needed to be in order to start the next round. She lost quite a bit of weight (about 5 lbs, which she didn't have to lose because she is already entirely way too small for her age), didn't want to walk from being very weak, and very fussy. Also her ANC and platelets and others were low which also contributed. They did take her off Nifurtimox for 7 days to help get her back on track. During this time she was taking megace (which is used to treat the loss of appetite) and each week we have been going up about 1ML. When the 7 days were over, we had the option to either stay off the nifurtimox or go back on, but if we wanted her to stay off of it, she would no longer be able to be on the trial. The positive that we are seeing is that Emily has had the lowest HMA & VMA levels that she has ever had since being diagnosed and are now within normal ranges, so we honestly feel like what we are doing is the right thing.

With the help of megace, Emily is eating well and has gained 2.7 pounds and is now at 27 almost 28 pounds, so the megace is doing its job. This past Monday Emily ANC and platelets were where they needed to be and she was able to start Round 2 of the Nifurtimox trial. So the chemo started. Emily's sister from Massachussetts was also able to be here and visit and helped with clinic during the chemo this week which was extremely helpful.

Chemo completed Friday after an extremely long week with long days at the clinic every day and each night Emily was exhausted and ready for sleep. She had moments twice this week where we thought she was going to sick, but she did not thankfully! So far her counts have not tanked and for that we are thankful, but we are being very careful to keep a close eye on her and making sure that she stays around healthy and feels as healthy as possible with no fever. As we all know fevers mean inpatient stays.

Scans have already been scheduled for the week of May 7th at Helen DeVos in Michigan, but we are just waiting on the final dates and times. Our hope would be just to drive our own van since last time we had to leave on the weekend and be there 3 days before the scans and couldn't take our youngest with us and stay in the Renucci House, however with gas prices that probably won't be possible. So if any of you are interested in sending gas cards, we would love that because they would be extremely helpful to make a trip from VA to MI.. If not we will be looking into seeing what either PALS or Wings of Mercy can do.
Top: Jessica (BF), Myself, Jessica (Cousin),
April (sister), Elyssa (daughter), Jessie (daughter)
mine Lana and Sheree (RM Friends)

Lastly yesterday a group of 8 of us did the 5K ASK Walk for the ASK Organization which helps the clinic where Emily and many other children are treated and also helps the school where Emily goes when her counts are well. "Team Emily" ended up making $695 and without the help of all our fans and friends, we would have never made that. I was very happy with the outcome and next year hope to make a bigger "Team Emily" and make more donations! Again thank you so much family, friends and fans for helping making this possible. It means so much.

I want to continue to say thank you to everyone for your continued support, because it totally makes things possible for us and I just want to say thank you! Thank you! Thank you!

Remember to hug and love your hugs and tell them how much you love them. Please also send your love and thoughts to Krysten Nicole Collins who is fighting Neuroblastoma as well and not doing well right now.

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