PET Scan Tomorrow

After our scans in Michigan, I haven't updated since....I apologize.

Our last update, Emily had MIBG/CT scan and Dr Sholler said it was stable with some of her disease having a slight uptake and the some of the other spots with a decrease in uptake. There was one spot she was concerned about that quite a bit of uptake compared to the many of the last scans.  So she asked that we have a PET scan at home and have them send them over to be reviewed in Michigan.  Dr Gowda quickly worked on getting a PET scan scheduled and was able to get one scheduled for us tomorrow at 9AM. We haven't had scans at VCU from the last time when we were told that Emily was clear and she wasn't.  Although PET scans are totally different, so we are ok with getting it done here. 

No eating 8 hours before the scans and nothing to drink 4 hours before except for to take any medication that she may need to take. We do not know how long it will take to get the results on these, because we are not sure how radiology will be sending over the PET scans to Michigan.   But once we know, we will be able to update and let you know the outcome.  If the PET results come back Positive, we will be making an unplanned visit to Michigan to get Emily set up on another trial.  If they come back negative, we will just continue with the DFMO as we have been doing.  Please continue to keep Emily in your thoughts.

Overall Emily is doing well. She continues to go to school and enjoy her friends.  Last weekend she had her very first sleep over with her best friend M.  It was really hard for us, we wanted to say no that she couldn't go, but she deserves to go like her dad said.  She deserves to be like the rest of her friends and stay with her friends from time to time and deserves to have a good time. Overall she has been well, but the only issue we have had is she complains of pain in her foot/ankle.  Some days it hurts worse than others and some days it only hurts a little and other times we have to give her Tylenol.  She has been wearing some type of brace on it because it bothers her.  So we will talk to clinic tomorrow to see if there is anything we should be concerned about.

Tomorrow we have to be at clinic early to get accessed for labs, clinic and PET scan. Originally we were supposed to come Friday to see the doctor for labs and physical, but since we will be there tomorrow, we were able to get in with the doctor early  and get labs and physical done.  My dad will be meeting us at the house in the morning and going with us for the labs and PET scan.  Thank you dad for wanting to come with us.

Oh Emily and Brianna didn't miss the father/daughter dance, it has now been scheduled for March 27th.  Emily is so excited that she will be able to go and this will be her first time going to the dance. 

We will update more once we know more.  Remember to hug and kiss your kids and tell them how much you love them

4 Year Anniversary

Today marks 4 years since our journey with Emily's diagnosis of Stage IV Neuroblastoma. December 23, 2010, 4 years ago, our little girl started a fight with cancer. Its hard to believe that she has been fighting this disease non stop for four years, but she has. While we would like to have a anniversary date for an end of treatment, for NED (no evidence of disease) for so many years, it is just not part of our anniversaries dates as of yet for Emily, but we will continue to hold hope that we will one day have them.   While we certainly wouldn't want to hear anyone say Happy Anniversary, what we want to say is we are so happy that Emily one amazing girl and making such huge difference in this world. She always amazes us. after everything she has been thru, and continues to deal with, she still walks through those hospital doors or into any situation for that matter, with that infectious smile. Her passion in life is was most of us take for granted. This was never a group that we wanted to be a part of, but we are, and along the four years of holding Emily's hand while she continues to fight with a smile, we have learned so much along the way.  We have met some really good people who continue to stand by our side while Emily fights and through her journey we have learned so much about family and friends.

Doug and I still remember like it was yesterday the day we took Emily to the hospital and when we were told that they found a tumor in our daughter's body. The ambulance ride to Children's Hospital of Richmond with Doug following behind Emily and I, and the extended stay inpatient during Christmas while trying to determine what Emily was diagnosed with.  All we wanted to do was to take our daughter home and be able to celebrate Christmas with our girls at our home.  Doug and I still remember being told by someone in the hospital that this gets easier with time,  and we have found that this doesn't get easier with time, the only thing we have found is a "new normal" that continues to change constantly as you go through the different treatments with your child, you just learn to deal with and make the best of it.

Like I said, over the past four years we have learned so much, not just about cancer, but about family and the importance of family,friends and community. Having honest and loyal family, friends and community a part of our journey, makes the journey with Emily so much easier.  The past 4 years has been hard on Doug and I, and most of these years have done them alone taking care of our girls while Emily fights for her life, but we have done it together. We continue to do it and make things work, even though we wish it would have been and continue to be different..  So many friends and family have walked in and out of our lives, because either our situation is just too much for them to handle, or just not something that they want to be a part of, just please remember while we do have so much going on in our lives taking care of Emily,  that doesn't mean that you can't talk to us and tell us things because you think it might be too much for us to handle, because it is not.  Remember we are normal people too who just like the rest of you want to be part of a "normal life".  Today we just want to enjoy the love of family and being with family and watching our girls smile, laugh and play. and feel that love that surrounds them from family that loves them. 

While this 4 year anniversary, we wish we could say that Emily is NED, we want this 4 year anniversary to be one that we are happy that Emily is thriving in life and doing so well going to school and running around and enjoying spending time with her sisters and her dad and I. We look at our little girl every day and we are so happy that every day we can celebrate another day with her and watch her sleep, that we can hear her talk and make jokes and talk about her friends.   Emily is a mommy and daddy's girl and to watch the love that she has for her parents, and her family would make one's heart melt.  We love hearing our daughter talk about all the good things that she wants to do, she has a heart of gold and a smile that you would never forget. 

Although right now, Emily's treatment plan, there isn't much to update in that part of her life. She is doing very well, loves going to Crenshaw Elementary School & loves being part of every event & function. So even though you don't hear from us to much lately, these updates are still hard because that means every time we sit down to write that means that Emily's Journey for the past four years is true and a journey that we never imagined we would be a part of. We are so happy that Emily is doing well, we always try to maintain a positive approach to every situation we walk into but we are not naive to the fact that this could change in any moment.  We know that the "new normal" that we live today could be ripped out from under our feet, everything could change and Emily could be spending a lot of time back in the hospital again. We don't and never have taken any of this for granted, every Birthday, every hug, every "I love You", every single moment!! 

Thank you to all of our friends, family and community who continue to stand behind our journey with Emily and hold our hands and be here with us as we continue to watch Emily inpsire.  Without all of you, we couldn't be where we are today so we thank you so much for all of the love, compassion and thoughtfulness each of you continue to share with us, it means so much. Thank you for the past 4 years and we thank you for continuing to be with us.

Some News

I will make this short and sweet!

Emily's scans came back great. We never receive good news and today we did. We needed this news because we worried so much!

Emily's scans came back as stable with decreased disease and some spots even gone. That is right...great news. They were not worried about the tummy pains or dizziness because they didn't see anything and scans do not show progression. 

All the thoughts you guys put out for Emily proved to show all the love she has and she is one strong girl and she has her mom and dad to back her and fight with her. Thank you for all the love you send and all the thoughts you send because each one means so much. 

Dr Sholler looked at us and said "whatever your doing keep doing it!"

Now we ask for you all to keep Brooke Hester in your thoughts because they didn't receive good news today!!!

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 

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.

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!

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 

Starting DFMO with Update

We are en route on our way home.  We were in clinic a little longer than expected, so after getting back to the camper and hooking up, we got a late start. We will be making a stop in Ohio tonight soon to rest and then staying in Pittsburgh tomorrow night. It's been hard because we haven't had internet to really update, so I apologize. But I do have to tell you, the camp Host at KOA was a great lady and was wonderful to work with. Thank you Theresa for being a great host. 

Emily had her MIBG scan yesterday and did pretty well. Her head was really hurting from the way she was laying, but she did well. Yesterday we thought she would have to go to clinic after MIBG scan, but she didn't so it was nice to go back and hang out at the camper and nap and enjoy time with kids. 

We had heard from Shannon, the nurse practitioner who was wanting Emily to get GCSF, we couldn't understand why she wanted it.  So we waited to talk with her today about it. We did get preliminary results from yesterday's scans yesterday as well, but didn't have everything back. She asked that Emily be in clinic at 8 before scan to check counts and see how things looked. 

Today She had her PET scan today and as always rocked it. Thankfully her glucose was fine this time and didn't cause a delay like it did in January. Shannon called with her counts and thankfully her platelets looked good from her Wednesday transfusion, hemoglobin is dropping and her ANC on Wednesday was 210 today it was 0!  Shannon said Dr Sholler would really like for Emily to get GCSF/neulasta shot because her bone marrow right now is not making anything, it is less than 5%. She said this is very dangerous and they would feel better that she have it. She did state again, please take Emily in to the hospital if she has a fever over 100.4 since we are driving. PET scan went well and she handled it well. 

We went back to clinic after scan, and talked with Shannon. Scans are stable with some spots brighter/more density.   They feel there is more density because her VMA in January was 8.2 and it has gone up to 11.2. We should have results from PET scan Monday hopefully.  If they are negative like they were before, like we were told before we know there is still cancer in her body based on numbers and scans.  After talking with Shannon, we decided it was best for Emily to get neulasta. Emily's bone marrow is not making any cells and they could see that from the bone marrow biopsy/aspirates. Dr Sholler was notified of this and she too was concerned.  Shannon also explained that when looking to see if they were positive for MDS and NB, they only had less than 5% of her cells to look at them, so depending on how things go she may order another one when she needs to be back in 8 weeks. We are still waiting for the final results of the bone marrow and for the cellularity and the cytogenetics. We wanted to head home and have stem cells given back to her but we need to wait on the final results to know if giving her the cells would even work at this point. If we gave them to her and some things don't look good, it wouldn't work. The final results which we are nervous about, can tell us if she has pre leukemia or anything else going on in the marrow.

Stable is good. We honestly have adjusted to hearing stable because that is what we normally hear, but it's positive when there is no new disease. It's still heartbreaking when you just want to hear those 3 magical words. One day, we continue to believe, one day.  HOPE!  Right now and for a while she doesn't qualify for any therapy because her bone marrow has been hit to hard.  Shannon stated Emily should not have been on the chemo with the way her marrow looked, but who would have known since we didn't have a bone marrow since last year. It's scary to think, but this is why Emily had a neulasta shot before leaving the clinic today. 

We started DFMO in clinic today and Emily is happy to know that she is no longer on chemo for now. Her body/bone marrow needs a rest. Emily showed Shannon she could take 2 pills at the same time. We went over everything again, and when Emily needs to be seen in clinic at home to get labs and physical done. We also have to make sure that if Emily has to go in the hospital for anything that the doctors let Michigan know in real time what is going on because this all has to be reported to the FDA since the drug is provided by the FDA. Right row Emily will still continue to make 2 a week trips to clinic at home until her counts have recovered. It's most likely she will need blood come Tuesday when she has clinic. And again since her ANC is bottomed out, if any fevers we are to head to the closest hospital. Please hope for no fevers.

Please continue to send your thoughts and love that everything comes back with good results. Emily needs a rest from treatment/hospital visits/clinic. She wants to return to school, she wants to do some "normal" things!

Remember to hug and kiss your kids everyday and tell them how much you love them. Things can change quickly. Thank you to all for continuing to be a part of her journey and spreading awareness of childhood cancer. 

What's Happening?

Today we are in the clinic waiting for Emily to get her treatment. Right now she is starting round 11 of the Avastin/temodar/irenotecan trial. We know that it is holding her stable, but we also know that we have run her course with this because her spots are no longer changing and two of them are brighter. At this time, it does give us time to review and reach out to other doctors on what is the next best course.  We have a few options that we are looking into.  Our goal as it has always been, is NED,with that goal in mind it's trying to make the next best path.  If we decide on the route of chemo and she has to lose her hair again, we are continuing to talk to her and tell her this can happen. But we have also told her that if it has to happen, Mom and Dad both will shave our heads to support her in having to lose her hair.  Thank you for many of you asking about hats, please know we may still be in touch with you on the hats, and we are very thankful.  With that goal in mind too, we are still looking for data to back what she maybe going into, but because she is no longer in the frontline therapy, all of her options are phase 1 and phase 2 trials, so numbers and facts are harder at this point. We are still looking into the vaccine trials which is the one in Texas, so there is a lot more traveling involved it's that, but we know we have to get her immune system up again, her platelets.  Today they are at 33, so still very low, so with the start of avastin and the chemo starting Saturday they are going to drop again, so she will need to be back Monday or Tuesday to check counts.  We continue to be very thankful for those who make donations, they are very helpful with Emilys travels, medicine and expenses. So thank you. The gofundme is also still available, http://www.gofundme.com/emilysjourney ...

So right now, our plan is round 11, this gives us 28 days to hopefully find the best direction. We will be back in Michigan for scans in January.  Just know It's hard to make the best decisions,  but today we are thankful that Emily is here with us for another Thanksgiving and thankful for everyday she is here and can continue the fight with her beautiful smile. 

#neuroblastoma

#neuroblastomasucks

#emilysjourney

Thank you Binkeez for Comfort for sending this wonderful blanket to Emily, she loves it, it is so soft.

EMILYS 2ND ANNUAL BANDAID DRIVE

November 30 is the last day to use the "Emily10" code on smilemakers.com to get 10%off bandaids and free shipping.  We are able to continue to receive bandaids up through December 5th, because our plan is to present them to VCU about the 2nd or 3rd week in December. As of last night, we are almost at 2000! Our goal is over 3000, so keep ordering and sending them in. You guys are doing amazing. Address is PO Box 5383, Midlothian, VA 23112! 

Shout out: 

OB Gates Elementary for collecting over 350 bandaids

Crenshaw Elementary for collecting over 400

Manchester High School for collecting over 1000

Smilemakers for not only making a donation of bandaids at the beginning but for the coworkers for doing a drive

Coworkers at Dominion in Cleveland, OH and the 8th and Main Building in Richmond, VA for helping

Churches and Apartment complexes and all the many others 

The list could go on and on and we don't want to forget anyone, because even one box brings a smile to the kids here in the clinic!!!!!! THANK YOU!!!!!

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

#emilysbandaiddrive 

#emilyhubbeldotcom

What Does the Fox Say?

Ring-ding-ding-ding-dingeringeding!

Gering-ding-ding-ding-dingeringeding!

Gering-ding-ding-ding-dingeringeding!

This has been in my head ever since yesterday morning when Emily was in her scan. She was having a hard time sitting there and her toes were bothering her, so I was trying to get her mind off of it. So she wanted to hear "What Does The Fox Say?" One of her nurses helping with the MIBG scan, actually dressed up as What Does The a Fox Say, so she was excited to hear her favorite song. Lol. Daddy and Brianna packed up the van while Emily was in her scan, so that when we were done meeting with Dr Sholler we could just leave. 

Emilys counts were checked again since her hemoglobin dropped so much from last week, but yesterday they were 8.7, so they did drop, but not enough to require a blood transfusion. We haven't seen her hemoglobin drop that much since May when she needed a transfusion. So we are hoping that it goes up on her own.  But also waiting to hear from Dr Gowda if we need to come in early next week. 

So, the results. I know everyone has been waiting for the results, but we didn't leave Michigan till about 215pm yesterday, so we didn't get to Pittsburgh until about 9 and honestly we were all exhausted, needing to eat dinner and daddy and Brianna not feeling well.  

HMA and VMA were within normal range,  not sure about LDH but no one said anything. Scan results show stable, meaning no new spots. The results Show avidity in right skull base near the soft tissue abnormality on CT. (We have never had anything show on the CT so this is new, but not new because shows on MIBG).  Increased activity along the floor of the bilateral middle cranial fossae and proximal left femur. All the other previous spots that she had before are still there with no change. 

What does this tell us? It says that the current regimen that Emily is on is no longer working and only keeping her stable. Which is obviously what we want, keeping it stable. But I have to be honest we wanted more than that, we have always wanted more than that. We also know it's no longer working when some of her spots are brighter than they were before.

So what can we do moving forward?

**DFMO (we will have to go back to Michigan and get a PET scan and a bone marrow biopsy. Have to be within 14 days of starting the compassionate trial of DFMO, scans still in Michigan)

**a new chemo cocktail: doxorubicin with vorinstat (not sure if we would have do round 1 in Michigan and then can come home to do the remaining rounds, scans still in Michigan)

**check on a TCell Vaccine in Texas through Crystal Luis to see if Emily would qualify

**check with Dr Modak on 3f8 (in NYC)

**see what Dr Gowda has available but scans are still in Michigan

**another round of current regimen since it keeps her stable

We really have no idea what we want to do moving forward. Obviously our goal is still NED. Both Dr Sholler and Dr Gowda do not recommend not doing anything at this time. When Emily was first diagnosed there was no trying to figure out what trial to put her on or what was next because there was a protocol already set for us. There is no longer a protocol anymore and now as parents you just have to decide what is the next best course.  What are you willing to put your child through and mor traveling or what have you. We don't have a plan, we will meet with Dr Gowda on Thursday at 9 to discuss what our possible next moves are. It's a possibility she could lose her hair again, so we would need to prepare school, her classmates ands letters home to parents of her class if we go this route. So we have already started telling Emily about this. So we will need to get hats again if we go this route.

Please don't get us wrong, stable is great in the grand scheme of things. What we didn't want was progression of more spots, thankfully that didn't happen. But our hearts want so much more than stable. Emily wants more than stable. We just don't have an end in sight yet. Isn't 3 years enough of battling with this stupid disease. But we are thankful that Emily is our fighter and handles it all so well. She is such a big girl and wise above her age.

Once we have a plan, we will update. We will take Emily to clinic earlier than Thursday if Emilys energy levels go down or bruising.

Thank you for continuing to keep us in your hearts, thoughts, love and prayers. Thank you for all those who wore Emily gear and shared it with us and thank you for continuing to help us though our journey with thoughts, love, prayers, gas cards and donations. They mean so much and help with our Journey and our continuing journey. Our friend started a gofundme to help with travels, expenses and other needs: http://www.gofundme.com/EmilysJourney

if you are interested. 

Make sure to hug and kiss your kids and tell them how much you love them. 

End of the Year Scans

So we are on our way to Michigan. UGH!!!!! Last night we made it to our half way point. We are always thankful to have our wonderful friends Sue and Jojo in Pittsburgh, PA (our half way point) who always have dinner ready for us. Thank you! Today we will travel the rest of the way to Grand Rapids, MI. Thankfully we were able to stay in the Renucci House this time.

December 23 ", 2013 we will be reaching Emily's 3 year mark of battling with this disease. December 18, 2010 was when the journey started and we didn't know what was wrong.   December 23, 2010 she was diagnosed with stage IV neuroblastoma and we weren't given great news for outcome. November 16, 2011 when Emily was going to CHOP to start antibodies, we learned that she had another spot on her lumbar, L4, which was progression. December 20, 2012 after Emily had 3 rounds of the compassionate antibodies, Emily progressed with several places including her skull and more spots on her back.

So here we are in November again! Scans at the end of the year! Why did I tell you all that? Our anxiety is off the roof right now. The end of the year we tend to have news we don't like. News that takes us to other places. Sleep isn't happening much, no patience in sight, and just all the fear.

So, scans are Thursday! Here are the Appointments coming up:

Wednesday, November 13:

--1030am for port access and CBC 

--1130am MIBG injection

--most likely head back for platelets if under 30

Thursday, November 14:

--1030am MIBG scan 

--1230pm meet with Dr Sholler to go over results 

Thursday if you have Emily gear, please wear it. Take pictures and post them on Facebook tagging Shannon Hubbel, or post to Emilys Journey (www.facebook.com/emilysjourney) or email them to me at shannon@emilyhubbel.com. I will post them in an album on Emilys Facebook.  Please send all your love, positive mojo, prayers and thoughts for stable or better....

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

Chemo/Chili's - Day 4 of Round 9

September 23rd -- today at Chili's Restaurant 100% of all net profits go to St Jude's for the children and Childhood Cancer Research. All you have to do is go in and eat or order out.  We don't normally eat out, but tonight we decided to eat out for the kids and for Emily.  #morehope

Today also is Day 4 of Round 9, which means its time to start the chemo. Hopefully this chemo remains easy on her stomach and she does well and can handle school ok. We will do the chemo at night since there really is no other time that she can do it since she is in school and then having 3 hours of no eating. She did really well with this when we did it during Round 8, so I'm sure she will handle it well this time. Because her weight went up, Dr Gowda increased her irenotecan a little bit also.  We are hopeful for another easy round of chemo.

Daddy went and had lunch again with Emily today since he was is working late. Emily enjoys having daddy come for lunch just as much as daddy enjoys going.

Busy times coming ahead with celebrating Emily's younger sisters birthday Thursday, she will be 4. Older sister has a dance on Friday night and then 2 birthdays next week, daddy's birthday on October 2nd and older sister Jessie's birthday on October 3 (she will be 12)!

Just a quick update with how things are going. We will continue to keep you up to date.

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

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A few things going on right now, a couple of fundraisers:

**https://www.facebook.com/events/609834575703838/

September is Childhood Cancer Awareness Month. 

Part of Origami Owl's Mission statement is to "Be a Force For Good" so Tammie Darko has chosen to donate 15% of all sales made through this fundraising party for the month of September to Emily's Journey to fight Neuroblastoma. 

https://www.facebook.com/emilysjourney

Please take a moment to read about Emily Hubbel's Journey. 

She will also be donating "Warrior, Fearless and Hope" Tags" to Emily's family.

Go to www.tdarko.origamiowl.com to order your locket or special tags, etc...early Christmas shopping to support this great cause. Choose party id 210154 Emily's Fundraiser at checkout. You can also place an order directly with me by emailing it to LoveTheLockets@live.com

Thank you for your support in advance.

**http://www.scarletscarves.us/#!childhood-cancer-awareness-month/c15ec

September is Childhood Cancer Awareness Month.

Our goal here at Scarlet Scarves is to help raise awareness of Childhood Cancer and to raise funds for cancer research. Please take the time to read about each of these amazing children. Together we can find a cure. By making a purchase goes to the family

Clinic - Day 1 Round 9

Emily had clinic today for us to talk with Dr Gowda to go over results and where things stand as of today and how we are moving forward.

Final results show uptake in left base of skull, right sphenoid, left orbit and multifocal aras in the vertebrae includind T8 and T11 through L1 and L4. There is stable uptake in both iliac bones and proximal femurs. So in comparison to the previous scan, they are stable with no new areas of activity.  The final bone marrow results did give Dr Gowda some answers on how Emily's bone marrow is working and able to produce the red cell, platelets and white blood cells. There is marked thrombocytopenia (low platelets) which we know. The bone marrow also provided us some answers with why Emily's platelets are having a harder time to come up when on treatment. The right side of her marrow shows 70% cellular make up of red cell! platelets and white blood cells. Dr Gowda said children on chemo they expect to see 70-80%. Emily's left side shows 50% cellular make up. These answers some questions on the platelets. Because of this though Dr Gowda wants her platelets to always be above 30, so this could mean that she has more platelet transfusions while on the chemo regiment.

Dr Gowda agreed with moving forward and doing two more rounds of the Avastin/irenotecan/temodar trial. Thankfully today her platelets were 41 and she didn't require platelets and she was good to start. So today started day 1 of round 9!!! Wow round 9!!! Scary, but Emily has had a lot of chemo under her belt, but she is doing great. Dr Gowda doesn't feel it's a time to not do anything, and honestly I'm not there either being that she just progressed in December. But as parents it so hard to keep it going, knowing so much more now that what we knew before. But stopping could also mean giving the neuroblastoma time to come back. So we move forward, two more rounds them back to Michigan for scans. Hopefully the next visit is nothing like this one was. 

Dr Gowda still wants Emily to get a bag of her stem cells sometime in the future, but he is ok right now with holding off on them. 

Today while getting her avastin, Emily started doing some of the work that was sent home from school for make up for missing today.  So proud of this girl, she just keeps rocking.  Dad and I love watching her learn, and she is doing so well at school. Daddy went and had lunch with her again yesterday and she enjoys that.  She also is really starting to get used to the Benadryl and doesn't sleep as long as she used to with it. But today put a interesting day with the fire alarm going off at the hospital and everyone having to go out. Interesting. Thankfully Emily was done and Elaine was able to get heperineze her line and when we got home, I went ahead and deaccessed her. 

Remember to hug and kiss your kids and tell them you love them. Have a good weekend. 

Quick Update

We received an email from Dr. Sholler today letting us know that the bone marrow and MDS are both completely negative. This is good news, because if the marrow were positive for MDS we would have to stop the current regiment that Emily is on. Thankfully that is not the case, and her marrow looks good.  Doug and I meet with Dr Gowda on Friday for clinic and to go over the options that we were given. Again we will most likely go with two more rounds of the avastin/irenotecan/temodar that she has been on. She has been handling that very well, with minimal sickness, and even gaining weight, 

 

 

Emily was so excited, she was able to ride the school bus yesterday for the first time with her BFF.  It's a big deal for dad and I to let her ride the bus and even harder for dad. Dad drives Emily to school every day and walks her to her class, so this is hard on him. But it is also hard on us because of germs and worrying about the other kids, but we also know we can't protect her from everything. However Emily is doing great and loves it.  We do know that there seems to be lots of sicknesses going around, so that is another concern for us, worrying about her getting sick since her immune system is compromised, which could mean hospital inpatient sickness or even fatal. We are constantly on her about keeping her hands washed and hand sanitizing her hands often during the day. If flu season is as bad as it was last year, Emily will be staying home and we will have the home bound teacher come again. 

Just a quick update. Remember to kiss your kids and tell them how much you love them. 

Results

We finally got the call from Dr Sholler tonight. Results are stable with not much change from the previous scans in July. She said preliminary results on bone marrow and MDS are negative, but she will get the final results by Thursday.  Doug and I are happy there isn't any progression and so far bone marrow looks good. Platelets are most likely not recovering as quickly because of the continuing of treatment, but they could be worse. 

We have a few options of treatment, and we will meet with Dr Gowda this week to go over options and what we are thinking moving forward. Emily also needs to have her platelets checked because the last time they were checked was last Thursday.

Right now we could do:

**another two rounds of what we have been doing and go back to Michigan after two rounds

**compassionate trial of DFMO (will have to travel back to Michigan to start this within 14 days of scans)

**TPI-287 (will have to travel weekly to Michigan if we chose this route)

We most likely will do another two rounds, but Dr Gowda wants to also talk about Emily getting some stem cells back to help her platelets. So we have some things to talk with him about!

Emily looks great and has been eating well. Dad and I are so happy with how well she is doing at school and enjoying it. She is growing up and becoming so independent. She told daddy when he drops her off at school if he could just take her to the door so she can walk to her classroom by herself. Daddy said she did well and didn't even turn around to see him, but almost sad that she is growing up. 

Thank you for all the love, thoughts and prayers for our girl as she went through scans.  We are still hoping to hear those words one day of clear, so we will continue on the fight and we are hopeful to get there. 

Please remember to hug and kiss your kids and tell them how you love them! 

Cancer...And All That Comes With It

I tend to forget to update often, and I certainly apologize for not being better at updating.

Emily is doing well and for that we are very happy.  She just finished round 7 of the Avastin/Irenotecan/Temodor trial.  Each round is 28 days.  But she handles each round and chemo really well as long as we keep up with the Zofran.   The Friday before last she had clinic and she needed platelets since they were low, her hemoglobin had dropped also, but not to the threshold.  When she had Day 15 IV Avastin last Wednesday, her platelets and hemoglobin were still low, but thankfully she didn't need any blood products.  Thankfully this chemo doesn't cause her to lose hair,  she is actually having lots of hair growing in.  Its really exciting that she has hair and she is happy that she does too, she is gaining weight.  The weight is awesome, the only negative issues is that it means that medicine doses are increased.  But again Emily handles them pretty well.

Today we are in the clinic getting counts checked and thankfully her hemoglobin has started to come up, but her platelets are 23 so she will require a transfusion. She normally requires Benadryl, but because we have her Claritin with us, we can use that.  She also has to get a steroid called solu medrol which helps with breaking out issues she has had in the past.

Lets not forget that September is "childhood cancer awareness" month, and we are trying to get our Facebook likes up, we are hoping to 8000, so help us out... www.facebook.com/emilysjourney ....

Being that we are gearing up for awareness....Many don't realize the hardship, financial difficulties, stress, fear and worry that childhood cancer treatments that families go through. Families will do anything, travel anywhere to get their child what they need, the treatment they need... Not only is the diagnoses of cancer hard, but the treatment, the longevity of treatment and travel is hard on families, but even harder on the child. Emily is so tired of treatment, and going to the hospital now gets harder and harder, because she doesn't want to be there anymore.  Im sharing this because I think it is important to make people aware of all that Childhood Cancer and what families go through. A family that we follow, recently posted on facebook that her daughter was going through surgery soon and people wanted to know how they could help.  She posted about certain diapers that her daughter uses, and what other things would help them.  While we couldn't really help monetary wise, I emailed the company to see if they could help her.  The company emailed me back and would be able to send them a little something, which is really nice. The financial difficulties makes it hard sometimes for just all the normal things that many take for granted, like with just needing diapers, groceries or simple things and now with school coming up and needing school clothes and school supplies.  So with September coming up and it is "Childhood Cancer Awareness" month and also time when many start school ( Emily will be going to first grade and Jessie 6th grade), lets remember there is more to the awareness of childhood cancer.   I know for us travel is hard, heading to Michigan and the cost the comes a long with it, and while Emily does well, she still knows why we go to Michigan and what is involved in that. But the gas and needing to eat while being out of town, is costly. But remember many don't like to ask for help, we are one of those families, so we know there are many others out there that feel the same. People always ask how they can help, and there are many things that people can do to help others!!! Anyway, But many have so many other difficulties with many other things. Just trying to spread the awareness that comes a long with cancer.

We will continue to keep you updated on Emily and how she is doing! We are really proud of her. We have noticed more as of lately that she gets upset very easily and sometimes they Get out of control. We think a lot of that is treatment related.  Also treatment related, Emily is going to need a lot of dental work. From the chemo, most of her enamel is gone on her baby teeth, and mostly we are more worried about getting any kind of infections and causing fevers. So we are going to be working with hemoc and dental to schedule an appointment and make sure her platelets are up and also to get a dose of antibiotics before going so the bacteria won't cause infections. She has also made comments here and there lately that she feels like she can't hear things as well, hopefully it is nothing, but we will see.... haven't had a hearing test in a while. So we will probably need to do that sometime coming up. It sucks what chemo can do and what some of the long term effects that it can cause.

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

Quick Update // Wear "Emily Gear" Tomorrow

Today Emily had clinic and MIBG Injection.  Clinic included getting accessed and checking counts.  Getting accessed today was one of those that really made me want to cry.  Julie didn't get to access Emily today and I really wish she did, because she never has any problems, but the girl who accessed her today, didn't the needle in straight and couldn't get blood drawn. She messed with it several times while Emily was sitting on my lap, screaming and crying she wanted to go home and saying it hurt and asking her to stop.  I said we never have this problem, it must not be in correctly.  She stopped and called another nurse in, who looked and felt around and by this time, Emily's anxiety was up and she was over it.  She lady ended up having to pull it out and poke her again, and this time she got it.  Emily was glad it was over, and I was wishing Julie was there to access her so Emily didn't have to scream and cry over getting her port accessed because she hasn't done that in a good long time. Since siblings can't come in, Dad was out in the waiting room with Brianna and later when I told him about it, he said you need to learn how to access her so that if that happens, you can do it.  I do need to learn how to do it, plus it would also help at home if ever needed to for whatever reason. 

All of Emily's counts look good, except her platelets did drop, they dropped from 43 to 32.  She did look like she was getting petechia, but I think the reason it looked like that is because of how much they messed with her port area and with her platelets being low.  MIBG injection was no problem except for radiology was running behind because they had an emergency scan study.  We always hate to hear that, because we normally know what those mean. 

We finally got to meet Molly Adair and her mom, and it was really nice to finally meet.  We have been talking to one another for the past two years and after two years we finally got to meet.  I also got to meet Jason Greer, Tristan's dad.  He knew we were here because he saw the HOPE Magnets on our van.  (Thank you Sue and Jo for making those for us)  I didn't have the pleasure of meeting Tristan, but I did get to meet his dad.  It is always nice to meet other families that you follow along with their journey and actually get to put a face with the name. I know there are a few other families here, but we didn't meet them. 

Tomorrow is scan day, Emily has scans first thing in the morning at 830AM and then we meet with Dr Sholler at 1230PM.  Dad and I were talking about it earlier, we are pretty nervous about the day and what the results will bring, but we have HOPE. We don't know what treatment will look like moving forward or anything like that at this point, but we are just taking it one day at a time.   So make sure you wear your Team "Emily Gear" and share it with us.  You can send it to email at Shannon@emilyhubbel.com or share it on facebook.  

Remember to always hug and kiss your kids and tell them how much you love them.  We will update tomorrow.

Michigan

We made it to Michigan at the Renucci House. Tomorrow Emily has clinic to get accessed and check counts along with HMA/VMA. So far she hasn't been bruising so hopefully she is still good on not needing platelets. She has her MIBG injection afterwards  Thursday morning is scans, MIBG/CT scan and then we meet with Dr Sholler afterwards. Make sure you wear your "Emily Gear" and share it on facebook, we would love to see it. 

We will keep you updated.. Please hug and kiss your kids and tell them how much you love them

Long Needed Update

Wow, I haven't updated this in a very long time and I apologize. I tend to update facebook just because it is much easier to do so. If you want to read Emily's updates or see pictures of her you can go to www.facebook.com/emilysjourney and like the page to follow.

Emily completed both round 5 and 6 of the Avastin/irinotecan/temodar trial.  She had a horrible bout of pink eye during round 5, which took a lot longer to heal and go away, but it finally did.  Round 6 she completely rocked, Dad and I think it had a lot to do with her BFF, Lilly who was by her side almost every day.  Thank you to Lilly's Parents for letting Lilly be by Emily's side.

Emily also turned 6 on May 30 during Round 5 and Diva's and Dudes has been wanting to give Emily a party since she was diagnosed.  We finally were able to have the party there and it was wonderful.  Emily really enjoyed herself along with her friends.  Thank you Diva's and Dudes.

Emily should also be started Extended School Year soon where she will get some time each week to go over things at home,  but come September Emily will be a big first grader.  While she missed the kindergarden graduation and much of the other kindergarden events, she will be a first grader. 

Emily's sister, Jessie. graduated 5th grade with honor roll and presidential award.  We are very proud of her and her accomplishments, so next year she will be going to Middle School.  We are very excited for her, and nervous all at the same time.   Brianna is Brianna, silly girl and loves to sing.   She will be 4 at the end of September.  They grow up so fast.

Also, we want to send out some amazing kudos to a young man that we met back in April, by the name of Navid.   Navid is riding his bike from Harrisonburg, VA to San Diego.  He is currently already in Phoenix, Arizona and we are so proud of him.  He is riding his bike to raise funds and awareness for Pediatric Cancer, in specific for neuroblastoma.   3000 miles, 8 weeks, One Cause.  His foundation is called ProJeKt 3000, and his facebook page is www.facebook.com/ProJekt3k, If you would like to make a donation you can go to www.gofundme.com/projekt3k.  Please make sure you are following him, he deserves some likes.

Now today....we are in Pittsburgh, PA....its our half way stop to Michigan.  We were going to go with the whole family, Jessie was going to go with us this time.  She has never been able to go with us, because she is normally in school, but we had forgotten that she had a prep class this week for Middle School, we will miss her.  So, its the 4 of us again making the trip. Emily has MIBG Injection and Clinic on Wednesday and scans on Thursday at Helen DeVoes Children Hospital and then we meet with Dr Sholler to go over scans.  As always, scanxiety is at an all time high... and we are always hopeful for those 3 wonderful letters, NED.  However, we will be happy with stable and/or decreased disease.   Being that we finished 6 rounds of the current trial that we are on, and that was what we had set out for Emily to do, we are anxious to know what are Emily's next steps, will she continue on the same trial, will she need to do another trial, or what will she need to do.   Anxiety is especially high, being that many of the kids that we read and/or know, are not doing well.  And this is really heartbreaking and really scary to us. Things can change so quickly that it will make your body spin and you fall to the ground, this is something that worries us all the time. 

We also want to send out lots of thanks to so many who are always by our sides, thinking of us, sending us messages, donations and gift cards.  We really appreciate all the love and support and to those that are so wonderful.   And we are so thankful to our wonderful friends, Sue and Jo for always being there for us.  Thank you again to everyone for all that you do, and you all know who you are.

We will continue to update this week to let you know how things are going.  We should be in Michigan by tomorrow evening. Make sure you always hug and kiss your kids and tell them how much you love them.  

Scans Update

Scans are completed and Emily is stable. We are happy there is no progression but would love to have heard something different but it's stable. Some spots are decreased from Sholler's view but all of her spots are still there.

It was a long day at the hospital and we got back in around 6. The best of this all is Emily looks wonderful. She is 33 pounds and she has lots of hair. We move forward.

We start the long drive home tomorrow taking a break tomorrow night and will be home Saturday sometime.

We come home to start Round 5 of the Avastin trial. Doing two more rounds and then back to Michigan for scans. Depending on how things look after round 6, we may put Emily back on the DFMO trial. At least that is what Dr Sholler suggests. We are always looking.

Just a quick update. Hug and kiss your kids and tell them how much you love them.