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, June 21, 2014

Round 4 DFMO

Well we are starting Round 4 of DFMO. Emily had clinic on Thursday to check counts, do a physical and HMA/VMA! Got to meet with Dr Gowda and had not seen him since scans at end of May. Counts looks great so there is no worry there.  He did say he looked at Emily's scans and based off what he read with the spots being brighter more intense and only one of them not as intense he said they would have called it different than stable.  He said he emailed Dr Sholler and she indicated that on the DFMO trial a patient cannot continue unless there is major growth to a spot or a new spot.  So with that Dr Gowda wants Emily to have her

HMA/VMA checked every two weeks. He said this is the only way to really check without scans until August. He said he felt that if they go up during those times he will do a recheck and then of still up ask for scans earlier. He asked that we just to be on our toes for another trial should something happen and we normally always are.  Overall though Emily is doing great! 

 #neuroblastoma #neuroblastomasucks #emilysjourney #emilyhubbeldotcom 

Sunday, June 8, 2014

Emily Update

Emily is doing great! The current treatment she is on (DFMO) gives her the best quality of life! We are hoping that this treatment is getting rid of the rest of the spots she has!!! But we are happy she feels so good and has energy to enjoy the summer and play with her sisters! She deserves it. We don't have to visit the hospital as much either, her counts look great! Yeah for a treatment that gives her time away! Her hair is taking forever to grow and we are sure that is probably the dfmo!


She will be going to summer school at the end of June to keep up her skills! 


#neuroblastomasucks #emilyupdate #emilysjourney #emilyhubbeldotcom 

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

Michigan....

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!


#neuroblastoma

#emilysjourney

#emilyhubbeldotcom

#hope

#DFMO

Thursday, May 1, 2014

Update

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!


Saturday, April 26, 2014

No Transfusions This Week


This was the first week that Emily didn't need any transfusions (blood or platelets)! Woo hoo. 

Emily had clinic yesterday. Dad too her to clinic and she did well. Blood pressure is still looking good. First Pass Image Scan (nuclear heart scan) that was done on Tuesday came back fine so we know that her heart is doing fine. Heart rate is still very high though with yesterday being 147! Platelets did drop from 42 to 33 but we are willing to wait as was Dr Gowda to see how she would do! Hopefully they will start to come back up on their own again. Dr Gowda did say he was going to let Dr Bunchman know about Emily's heart rates because he still continue to wonder/worry if it has something to do with her kidneys.  So we are supposed to be meeting with Dr Bunchman again in a couple of weeks and we will just keep a watch on her heart rate! She also had Day 28 on DFMO to report information back to Michigan yesterday as well!

Emily will return to clinic on Tuesday for count checks and see where things are.


Good week for Emily though. She is doing really well. Earlier in the week she had some hip pain but we all think as well as Dr Gowda it's just her bone marrow working hard! Thursday night Emily was honored as "Student of the Year" for her school for Kindergarden through 2nd Grade! We had a banquet in Thursday night where she was honored along with another student for 3rd - 5th grade as well as all the others from the other schools! It was really a big deal for Emily and she was so happy and did really well! Dad and I were super proud of her and for her accomplishment even with all she is going through!

Michigan did contact us and said they are working on scans for the week of May 19th, so right now we are just waiting to get the confirmation of it but. Our plan is to continue to keep her on DFMO as long as she remains stable! Once we keep her counts up we also hope to get her back to school. The hope is to her counts up and stay up so that we can get her on the vaccine trial under Dr Lucas!

Please continue to keep Emily in your thoughts. 

If you live in the Massachussetts area there is a fundraiser for Emily on May 9th and 10th at a local restaurant if any are able to make it. We appreciate all the love and help!!

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

Tuesday, April 22, 2014

Today's Clinic Visit

Emily had clinic today and thankfully today she didn't need any transfusions. Platelets are still low at 42 (they were 32 on Thursday of last week so didn't go up much with platelets on Friday)!

After counts she had her First Pass Scan (nuclear heart scan) which was pretty easy and she did well. Pic is of Emily waiting for the heart scan. Hopefully we will have results tomorrow on the heart scan of how things are looking.

Please continue to keep Emily in your thoughts and love. She is doing well though. She goes back Friday for counts!

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