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!

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!

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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Transfusions

Emily had clinic on Thursday after she was in bone marrow all day on Wednesday because she was needing platelets but after counts were done and heart rate of 150 she needed blood. So dad and Emily spent the day in the clinic on Thursday!   I took her on Friday bc she needed to get platelets and they didn't want to do both on Thursday because of her blood pressure issues!  No reactions from the platelets but after they were finished of course her blood pressure decided it was going to be high. They waited it out and it went up more and then gave lasix (only a very little but because We do not like using lasix) to get it to come down. After another half hour it started to come down and she was able to leave. So another long day yesterday! Next week she will have clinic on Tuesday and Friday to see what her counts are doing and Tuesday they are going to do a nuclear heart scan to see if they can see what is going on with her heart rate. 

Emily is becoming very emotional about the time spent in hospital lately and is tired of being accessed all the time. We hope in the next couple of weeks that will become better. And she will have less time in the hospital but for now we will continue what we have to do! 

Please continue to keep her in your thoughts!

#emilyhubbeldotcom

#emilysjourney

Stem Cell Boost

Today was a long day in the bone marrow unit but she did have a great set of nurses taking care of her. We stopped by clinic prior to bone marrow to get accessed since she was nervous about getting accessed by someone else!

The day went pretty well, she had counts down and everything is dropping. Platelets and hemoglobin dropping so she will definitely be going back tomorrow to get platelets and possibly red blood depending on how she is feeling or if drops anymore. Over the stem cell infusion went great, no problems or issues. Blood pressure remained on the lower side with heart rate being up. We are not sure why the heart rate is up but dr gowda said we could check her heart next week by doing a scan of some sort if it is still up. She had 4 hours of fluids after the stem cells.

Tonight she is doing well, she seems tired after a long day and agitated but we are home and for that she is happy!

Thank you for continuing to keep Emily in your thoughts!

#emilyhubbeldotcom

#emilysjourney

Fevers

Today marks 4 days that Emily has had fevers off and on during the day and night. The only symptom she has is a fever. Everything she was tested for earlier this week has come back negative so we have been giving Tylenol at home. We also haven't given her blood pressure medicines too her the past 4 days because her blood pressure has been a little on the lower side with high heart rates! 

Dad took Emily to clinic this morning and upon arriving she has a fever of 101.3 with high heart rate. I came in mid day so that dad could go home to sleep since he has to work tonight. They did blood cultures again and are checking to see if she has the flu. We should hear from the doctor on call sometime tonight if the flu test is positive! If it is they will call in tamiflu. If it is not, if she has another fever we have to call the on call and let them know. Obviously we worry about fevers for four days because it reminds us of when she was diagnosed bc she had unexplained fevers! 

Her red blood is slowly dropping currently at 8. So we have to watch her to see if she is tired to take her in for blood. Her platelets did drop from 63 Wednesday to 32 today, so she needed a transfusion so she would make it through the weekend. We figured she would need them since fevers eat up platelets!

Right now she doesn't have to return until Wednesday unless another fever or needs a blood transfusion! Wednesday she will be admitted Into the bone marrow transplant floor and prepped for her stem cell boost.  The plan is just to be there all day unless something happens. She will then have to return Thursday morning depending on what her counts are Wednesday. 

It's been really busy at the hospital lately and we really need a break. Heck it would be nice to have a vacation away from it all. But.  

The neulasta (14 days today) worked very well for her WBC and ANC because that is up. It's possible to stay in her system for another week and we could possibly see a drop off but we know it's still around right now. Since her ANC is up they are not keeping her inpatient unless sometime else happens! Since today was 14 days on DFMO, VCU was sending over her information from today to Helen DeVos for day 15! According to the trial she will need a day 28 labs as well. 

Please continue to keep Emily in your thoughts. We are hopeful it's not the flu but at the same time we don't know what else is causing the fevers!

Thank you for continuing to follow Emily and her journey! 

Still Waiting for all Counts to Recover

Emily had clinic yesterday (Monday) with dad. They spent the day there. Her hemoglobin is dropping but not enough to need a transfusion but if it continues to drop she will need one come Friday. Her platelets did drop from 38 to 15 so she received 4 units of platelets after all of her Premeds.  Heard from dr gowda today that he is scheduling stem cell boost for next Wednesday. She will be admitted for the day to the bone marrow floor and get a bag of stem cells. This will take a good four weeks to start working. She will come back Thursday for platelets so she will be good for the long holiday weekend which will also be day 15 of dfmo trial and then come back Monday to check on her counts. Hopefully once we get past this bump of needing transfusions she can have some time away, but still another 5 weeks or so before we can start the time away from the hospital! We will be back in Michigan sometime end of May early june! Emily will also be turning 7 MAy 30th.  

Please continue to send your love and thoughts for Emily!! 

#neuroblastomasucks #emilyhubbeldotcom 

#emilysjourney