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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Thursday, February 28, 2013

Scans Complete with Update

Emily waiting in the clinic today

We have had a busy two weeks, so sorry for the lack of updates.  I try to keep facebook updated as much as possible.  Last weekend, a fundraiser was put on for our family for travel, medical expenses and Emily's chemo by Steve from Wholesale Guitars and it was an amazing night. Emily originally didn't want to go and the only way we could get her out the door is to let her wear her night clothes. (she lives in them).  Once we got there, she didn't want to leave, her best friend, Lilly, from school was there and they have such a bond and a true friendship that is so great to see at such a young age.  Everyone had so much fun, Jessie and Brianna did and it was such a great night. Steve thank you for all of your hard work for the fundraiser, it was an amazing night.  Thank you to Amy for getting the shirts made and tank you to all of the bands and especially to Hali Hicks and her husband Trey Cordle.  Emily didn't want to leave until she saw them play! Thank you for everyone's hard work and a wonderful night and thank you to the friends and family and people that we didn't know who come to support Emily and our family!  THANK YOU!!!!

We are on the road traveling en route back to Virginia, so if I have spelling anything incorrectly, I apologize in advance.  Probably won't be home until tomorrow sometime, but we are en route.  Its a long drive, but even longer for the kids with long periods in the van.

We left Sunday afternoon heading toward Michigan and arrived late Monday night. Emily had clinic Tuesday morning with counts and injection.  All of her counts remain ok, with platelets at 29.  They wanted her to have her counts checked again on Wednesday before scans just to see if she was maintaining her own platelets.  Anxiety for this scan has been pretty intense, mainly just because we changed up the treatment from the DFMO to the chemo on our own from research. Emily's counts still remained ok, but her platelets dropped to 19, so she needed platelets.  She ended up having a weird reaction to the platelets of coughing like crazy, but once they stopped them and the coughing subsided, they started them back up again, just slower. This definitely helped just took so much longer, so we had a long day in the clinic. Long days have been a normally lately, but the positive from that is that we aren't spending as much time in the hospital.and mainly only one day a week.

Today we met with Dr. Sholler about the results.  We waited and watched many nurses and doctors walk by our room, and each time we heard footsteps, anxiety was building. We feared the wait meant the worse, we feared the room we were in, meant the worse, we feared it all. Finally after waiting about an hour, Dr. Sholler came in and said "Things look better!" Sign of relief and thankfully she didn't make us wait to go over things..  She showed us the scans and things definitely look better. She has two spots that have mild uptake, we originally thought it was one, but after review, it was two, and two spots on her spine are resolved and all of her other spots are mildly decreasing. This is great news, 

Thank you to everyone who for the past two days and days before have shown their support by sporting the Emily gear and leaving their love and support on Emily's page.  It means so much, and it helped. The last two rounds of chemo and Avastin have helped along with the homeopathic things that we are doing at home and only organic. 

Dr Sholler recommended with the positive results of the scans, to do two more rounds of the same chemo and Avastin, except that instead of doing 21 day cycle for the round, make it 28 days.  Both Dr. Gowda and Dr. Sholler are both agreeing with this because of her platelets and hopefully this will give them more time to recover. We too are ok with this and will start looking into some other homeopathic stuff to add into the mix here. After the 2 rounds we will go back for scans and see how things look.  The 28 day cycle should also give some more free time in the mix as well, so we are definitely ok with proceeding.  The hope is still for CR (Complete Remission) and putting her back on the DFMO to either keep her in Complete Remission or at least stable (partial remission).  

Thank you for continued love and support and sending all of your thoughts, because they means so much and we are so hopeful to still get Emily into remission and this nasty disease gone and out of her. She is ready for treatment to be done, but she is handling this so well and we are so proud of her.

Alright the kids are calling in the backseat, so that is my que. Remember to hug and kiss your kids and tell them you love them everyday!  

Wednesday, February 20, 2013

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!

Monday, February 11, 2013

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!!