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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Friday, May 23, 2014

Emily Update

Sorry for the delay in updating! Lots of driving!!

Emily did well with scans! Thankfully all of her counts are looking good, platelets did drop but only by 5 points so we are not too worried about it!

We met with Dr Sholler and Nurse Practioner Shannon after the scans and they are happy with how well Emily looks. Her hair is taking longer to grow in but we are thinking it is because of the DFMO! It can cause thinning of hair.  Hearing test have to be done every 6 months so when we go back the next time she will have another hearing test.

Scans are stable. Final impression : increase in amount of avidity/activity at multiple spots including the spots, spine, pelvis and proximal femur. It is especially noted in the left orbit. Mild decrease in right iliac. 

For now we will continue with DFMO and have scans again in 3 months. We will watch her HMA/VMA urine at home but right now they are the lowest they have ever been. Although when she progressed in December a year ago her numbers were not up. 

Dr Sholler did go over another trial with us that is DFMO with velcade. It just opened a week ago so we may think about doing it later but for now we feel this is best to keep her on just DFMO! She too was ok with us continuing on just DFMO being that she doesn't have any new spots. 

Emily is doing great though so we are happy with where she is right now. We will continue weekly visits to clinic to check counts and hopefully once they feel they are stable enough we will move to every two weeks but for now once a week. 

We are now spending time with family for the Holiday , have cake for early birthday for Emily!!  Emily will be 7 May 30 and she is excited Icing Smiles will be making her a dream Frozen Cake. 

Sorry again for the delay.

Tuesday, May 20, 2014


We made it to Michigan safely last night! Today Emily had clinic and Mibg injection! Today was a great day, Emily's counts are still looking good... Stable from last week, so we are very happy about that..

Tomorrow she has Mibg in the morning and then we meet with dr Sholler in the afternoon. We hope to remain stable and continue on DFMO! Wear your "Emily Gear" tomorrow!






Thursday, May 1, 2014


Photo of 3 neuroblastoma fighters in the clinic this past Tuesday!!

So Emily had clinic on Tuesday and her platelets have gone from 32 to 52!!! Yes you read that right up to 52 on her own. Her red blood did drop again but maybe it's just dropping to Emily's normal because it is still looking ok! Tomorrow will mark 2 weeks that we have not had any transfusions!!  And because her counts are coming up she doesn't have to go back until Tuesday of next week! Well only with the promise that if something happens between then and next appt that we bring her in!! 

Hair is taking a lot longer to start growing but we are starting to see some fuZz!

So we received confirmation today of scans schedule in Michigan!!
Yes you also read that right we reviewed notification of scans 2 weeks before we are scheduled to go. Amazing. We are planning on taking our camper again... We had contacted KOA about seeing if they would offer discount for families like ours who travel but they indicated they didn't offer anything like that and it was up to the location. The location before didn't offer anything! I was kind of surprised being that KOA offers Camp Kare for kids fighting cancer which is pretty amAzing! But they don't!! Emily wouldn't be ready to be sent off alone for a camp but for kids who do it's pretty awesome what they have. If anyone wants to check out about camp --- http://www.koacarecamps.com/! We did hear back from one of them who stated that they would send us a KOA card and a few free nights. Hopefully it will make it here soon so that we will have that to stay while there because the gas alone is pretty expensive!

Below is the schedule, so if you like to wear your Emily gear, shirts or wrist bands -- get them ready and if you don't have them, put on your pink and purple (Emily's favorite colors)
Tuesday, May 20

11:00 a.m. – Clinic appointment 
12:00 noon – DX-MIBG Injection
Wednesday, May 21 

10:30 a.m. (arrive @ 10:00 a.m.) – DX-MIBG Scan 
2:00 p.m. – Clinic appointment w/Dr. Sholler
Thursday, May 22

9:00 a.m. (arrive @ 8:45 a.m.) – PET/CT 
Don't forget we have the fundraiser in Massachusetts if any of you can make it and we know we have some friends here in VA working on something (maybe a walk or something) but it won't be until June! We know people ask, but you cane donate through Emily's webpage!

Our hope is that the DFMO is keeping Emily stable and that we can keep her on this treatment with less time from the hospital.

May 30 Emily turns 7! She wants to do "Frozen" theme party! Dad and Emily went looking for Elsa and Anna Dolls today and couldn't seem to find them anywhere so hopefully we can find some stuff and find someone to make a Frozen themed cake! I can't believe she is turning 7! I remember almost 2 years ago we were told that Emily may have another year before NB took over and Emily will be
7! That's right take that cancer you can take it somewhere else because this girl is kicking your butt and will continue too!

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