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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Sunday, September 30, 2012

It Never Stops

Thank you to my niece, Katie, for making this. 
Its hard to believe that tomorrow is the start of a new month, October of 2012, which means today is the end of September. September is "Childhood Cancer Awareness Month, Spread the Gold". Today I was driving in my car and looked in the rear view mirror where I wrote in GOLD about emilyhubbel.com to spread the awareness. What surprised me the most is no one asked about it, no one asked who Emily is, not one person. I guess it surprised me that no one said anything, because I wonder if people are making themselves aware. So, today I wrote on the bottom of the back window, "Are You Aware?"  And if anyone asks, we have business cards for emilyhubbel.com, to spread the awareness. While today may be the end of September, it doesn't mean that we are done spreading the awareness about childhood cancer, about Emily and about the other kids who are fighting this nasty fight. We will continue to spread the awareness because it never stops for Emily who is fighting and all the other kids who are fighting. It Never STOPS!

Tomorrow Emily has clinic for lab counts to see where here counts are.  Hopefully she doesn't need any transfusions and hopefully her counts are on the up and up and she will be back in school by mid week. Emily has a cough right now, which at first she only had at night when she was sleeping, but she has it during the day now, so hopefully its just a cough and nothing else.  

We still haven't had an update on what is going to be covered with the shots that Emily will need for antibodies, so we hope that everything will work out and we won't need to pay out of pocket.  I know that we needed to send a copy of our prescription card over to have them review it through there, but we haven't had any update since then.  

We also are not sure when antibodies will start since we are waiting for the approval, so as soon as we know more about that, we will update you all about antibodies since we have had a lot of people asking questions about what it involves and why Emily needs it?

Again as it appears we will be traveling to Michigan during the week of October 8th, we will probably be driving this time since we are still waiting on dates.  The last email I had was from our nurse, Julie, from Helen DeVos who said they were working on dates, so we should be hearing soon.

Our fanbase picked up on facebook, so lately I've been getting messages on facebook from fans on things that are helpful for us and where to send things for Emily, and I just wanted to let you guys know the address is:

PO Box 5383
Midlothian, VA 23112

Things that continue to be helpful is gas gift cards for traveling, gift cards,and just cards for Emily.  Emily loves to check her mail and see cards that people make her.  She absolutely love cards, and she thanks everyone of you who sends her cards thinking of her, it puts a smile on her face.  Today Emily received a card from Ashley's Special Cards and she loved the card all done up with Justin Bieber. It was really sweet. 

We will continue to keep you updated on how things are going.  Keep spreading the awareness of childhood cancer and our children, and make sure you hug and kiss your kids and tell them how much you love them. 

(Don't forget pictures are posted on Emily's blog at www.emilyhubbel.com and for most up to date updates and pictures on on facebook at www.facebook.com/emilysjourney.)
Emily wearing her wig that she received through VCU. 

Saturday, September 29, 2012

Finally an Update

This update has been long overdue and I apologize for not updating sooner.  Again no excuses, just no update.

While at this point, we are just waiting to get all the approvals needed for antibodies, Emily has a few tests that the FDA and NCI needs in order to approve her for the compassionate use of Antibodies. She was in need of a PFT and Echo. So, the Friday before chemo, her PFT was done.  That was such an interesting test, but she did well.
Emily had her 7th round of chemo the week of September 17th. Emily amazed us as each day as she begged us and the nurses was she done for the day so that she could go to school. While Monday and Friday during the week of chemo, she couldn't go to school, Emily made it to school the other days.  We are so proud of her and her strength. When she would get home she was exhausted, but was so excited to be with her friends and her teacher. We are also so happy that Emily has such a great school who has an amazing teacher and rest of the staff stand behind Emily and us.  Thank you Crenshaw Elementary. That Friday, she ended up needing blood and we knew come Monday when she had counts checked she would be neutrapenic.

As expected this past Monday, Emily was neutrapenic and platelets were extremely low requiring a platelet transfusion.  Neutrapenic meant no school for Emily until her counts come up and with an ANC of 0 we just have to wait for them to come up.  We came in Monday for lab counts and then left and went to have an ECHO.   Before heading to the Echo, I noticed that Emily had some bleeding in her mouth, Emily has 2 loose teeth with one of the adult teeth already starting to come through.  Can I tell you how exciting this is to experience something "normal"?  But also makes a parent whose childs counts are low that with the bleeding and low platelets, a bit unnerving.  Emily laid there and was just talking away to the technician who was doing the Echo about anything and everything, it was so cute. She said that the results would be passed over to Oncology by the next day.  After the Echo, we went back to the clinic where Emily required getting benadryl to get platelets and waiting for the platelets.  When the platelets were done she had a reaction causing a hive on her head, keeping Emily in the clinic longer so her nurse could keep an eye on Emily. Afterwards she had a hearing test, she hasn't had one in a year, so it was nice to know that Emily is continuing to do well.  She is borderline normal for high frequency and everything else is normal, we are so happy to hear this, because we were expecting hearing lost with the amount of chemo she has received.  This past Thursday, counts were unchanged and platelets were still low.  Dr Gowda wanted Emily to get 3 units of platelets because of her loose teeth and the possibility of bleeding over the weekend, but before she could get the platelets she would require benadryl and solumedrol which is a steroid to help with the reaction to the platelets. While getting the platelets, Dr Gowda wanted to talk. The results from Emily's echo, showed that the left ventricle was borderline normal and with this being Compassionate Use we are trying to get approval for, the FDA will require further testing and make sure it is normal. We also talked about the scans coming up prior to starting Antibodies  and what the Antibodies schedule will look like.  He did say that the GCSF shots that are required are not completely covered by insurance, and we would be required to pay 20% of the them.  They are still working with insurance to see if this is correct or how they can work around this, so we should be hearing about this soon.  Hopefully they can get this corrected somehow, they indicated that insurance doesn't cover these shots when requested a certain way, so we are just waiting to hear about that. 3 of the rounds will require 14 days of these shots. We talked about the inpatient stays of each of the rounds and how things work, the pain that Emily would feel, the morphine pump that she would be attached to and other things. All of this is things that we are aware of, however we do know that it ups her EFS (survival rate) up 20% and this is what we want for Emily. Dr. Gowda said he also reviewed the scan report from Michigan and according to what he reviewed, he saw the 4 spots were still being noted.  I was a bit confused by this because when we left, we were told that Emily had 3 spots left.  So I've put out an email to Dr. Sholler to get some understanding about this and find out about this. We also talked about how VCU's scans stated that she was clear and scans from Michigan show otherwise.  While this isn't something what we really want to talk much about here, I will say that he has someone looking into this and we will be calling Patient Relations in reference to this just because its a bit unnerving for anyone. Today Emily had a First Pass Test which is a nuclear scan that images the heart when they put some iodine into her line.  This was done for the FDA to make sure that Emily's heart was producing exactly what they wanted it to produce.  Later Friday afternoon, we received an email from Dr. Gowda advising us that Emily's scan met the parameters needed for the FDA. I can't tell you how happy Doug and I were to hear this news. It was one of those, "AWESOME!"  VCU's Institutional Board also met about the request of the compassionate use of Antibodies Thursday evening where Dr. Gowda was the representative from the Oncology group and was given a verbal appoval , so all of the paperwork is going to be sent off to NCI and FDA to get final approval. Hopefully we should hear something in the next 10 to 14 days. Doug and I are so anxious to get this done, because the big hope is that after the 6 rounds, Emily be done by early May 2013 and be done to treatment.  That is surely our hope, but we are not naive.
Our next steps are to get Emily's counts back up, she will have clinic again on Monday to see where things are.   Her ANC is still 0, so we are hoping come early Monday that her counts will be back up so that Emily can return to school.  Emily loves school and misses her friends and is ready to be back.   We are also happy that some of the parents who have touched based with us, and honestly that really means a lot to us.  Thank you!  We also need to check will Emily need to have another line placed to do antibodies, so we will be checking on that.  If this is something that is required to be done, we will most likely go elsewhere to get this completed.  As of right now, it appears that the week of October 8th we will be going back to Michigan for scans to see where things are prior to starting Antibodies.  These scans will help us know where Emily stands prior to starting antibodies and when she gets her scans after the 3rd round of antibodies we determine how things are going for her and if they are effective.  So, lots has been going on in the short period of time, but I have to tell you that Emily is doing pretty well.  She is happy and excited about her teeth that are loose, she is full of love and compassion and she is growing up so quickly!  We really are very proud of her.  She continues to take her medicine like she is supposed to, and we are just so proud of her.

As parents with a child with cancer, we just continue to move forward, while life is busy working full time, clinic visits, scans, traveling, the other girls, normal day to day stuff, the world just continues to go.  We watch Emily grow up,we watch the girls grow up and we are just so amazed at how fast she and the others are growing up. Emily honestly reminds me so much of myself growing up, that is just makes me smile. Dad has this connection with Emily, that is just amazing.  Brianna just celebrated her 3rd birthday, and is doing well in school.  She loves it now and wants to go to school, and loves her teacher Mrs. Robin.  We are so happy she is happy there, and she is working on the potty training.  Doug and Jessie will be celebrating birthdays next week also.  Doug's birthday is on Tuesday and then Jessie;' is on Wednesday and she will be 11. Can't believe she is going to be 11, my gosh has time flown by. She is growing up and doing so well in school, so we are very proud of her. Next week will be another busy week, Emily has back to school on Tuesday night (so hopefully counts are on the up and up) and Jessie has back to school on Thursday night, along with dance on Wednesday.  So, a busy week then with the next week most likely heading back to Michigan.

Sorry for the long update, just wanted to update you all on where things are.   Make sure you hug and kiss your kids and tell them everyday how much you love them.

Please think about our sitter, today after clinic we picked her up and brought her to the house to stay with Emily and during the day there was a severe thunderstorm.  I went to bring her home and upon arrival, we found that a tree had brought down a powerline and hit her house and there was some leaking inside of her home.  We are so happy that she wasn't home when this happened and tonight she is with her sister, but please think about our sitter as she goes through the motions of getting this taken care of.

Sunday, September 16, 2012

Great Past Week

Emily's 2nd day of Kindergarden!!
Emily had an amazing first week of school.  All of the students were really good with her and she wanted to go back everyday.  We are so happy that she enjoyed her first week of school.  We are so thankful that Emily is in such a great place with great kids and such a loving teacher. 

Brianna on the other hand, had a hard time at school this week.  It was new for her, and new to be around a lot of kids that she isn't used to being around and just adjusting to not having a binky.  We are thankful that she is in a good place and they are working with her. We know it will take her some time and she will get used to it.

Jessie is doing well in 5th grade.  She has more homework this year, but to be expected with 5th grade.  

Overall this past week, was a great week and the girls did really well. We explained to Emily tonight that this week she would be in clinic all week for another round of chemo.  "I thought I was done with chemo!" We explained to her we thought she was done too and how she has 3 spots left and we need to get rid of them. Emily took the news well and we told her how proud we are of her for being such a good girl.  

Earlier this week, we heard some awesome news from Dr. Sholler. Dr. Sholler received approval from National Cancer Institute that Emily is eligible to receive CH14.18 compassionate use with an Echo and Pulmonary Function Test. These two tests need to be completed and sent over and hopefully can start CH14.18 within a month.  So, Emily will do another round of the Nifurtimox trial, 4 days of chemo with the Zometa, Day 5 Neulasta shot and then 3 weeks after the chemo, we will head back to Helen DeVos for scans to get ready to start Antibodies.  We are so happy that Emily was approved for compassionate use of the antibodies, this has been our goal to get Emily to antibodies.  After antibodies, we will have Emily on the DFMO trial that Dr. Sholler has, but that is to talk about when we get there. 

We are hopeful that with this round of chemo that her counts do not drop below 500 because if they do, she will not be able to go to school. It is likely that they will drop, but we will still remain hopeful. We did explain that to her, but we will see how things go. It has been absolutely amazing not seeing Emily laying on the couch these past few weeks, Dad and I have seen Emily run and play, laughing and having a good time.  It has been amazing and watching the energy she has. Yesterday we spent almost a full day playing outside, and the girls running and having a good time, and it was great to be outside with them and let them have fun (besides worrying about the West Nile). We didn't think she would make full days at school this past week, but we did and we are just so amazed that she did so well. Emily had her PFT on Friday, which was quite interesting, but she did pretty well with it.  We learned that Emily is 30 pounds, that is right, she is 30 pounds.  She hasn't been 30 pounds since diagnosis back in December of 2010, so we are hopeful that we can keep this weight up. 

So, please send all your positive thoughts that this round of chemo knocks out the 3 spots left and that Emily handles this round well. We also want to continue to thank all of the amazing people out there who continue to think of Emily and our family and for sending your thoughts and love to us, they mean so much to us.  Thank you again for all that you do.
Good night.  We will keep you up to date on how Emily is doing this week on the 7th round of the Nifurtimox Trial.  Remember to hug and kiss your kids and tell them how much you love them.

September is Childhood Cancer Awareness Month, spread the awareness.

Saturday, September 8, 2012

Only 3

It was been a long few days back in Michigan with leaving Tuesday evening, getting accessed, needing platelets, getting letter to Emily's teacher for the parents, bone marrow, needing blood, MIBG/CT scan, and talking with Sholler.  But we made it through it.

Emily is so strong and amazing and we watch her as she gets accessed and she is taking it so well and we are so proud of her.  She was so strong when she had to go for her bone marrow and she was again amazing for taking it like a big girl.  Handling the MIBG/CT scan although her toes were bothering her, but she did it and we were so proud of her.  How can you not be proud of a 5 year old little girl fighting, fighting so strong to be all that she can be.  She makes her dad and I so proud, so proud to be her parents.

7 spots, only 3 spots are left and 2 of those spots are almost gone and the last one is getting smaller.  This is amazing. The spots that were on her skull and 2 on her spine and 1 of her femurs is gone, they are gone.  We have never seen such amazing change since we have started this whole ordeal.  While we previously reported Emily was clear from the scans from VCU, we knew that these scans were not optimal as the ones in Michigan.  A regular MIBG scan to a fused MIBG/CT scan is a bit different. A regular MIBG scan you can only see the top and bottom of the body, where as the MIBG/CT scan , the two are fused together, and you have a 360 angle view and 3D.  The technology is amazing.  After Dr Sholler looked at the scan from VCU she can see how the scan was considered clear, however from doing the 360 angle 3D, you can see right down the middle and actually see the spots.

So what does this mean?  Currently there isn't antibodies available, such as CH14.18 or HU14.18.  We truly believe that this will clear her and keep her in remission forever.  We want to to get her there. At one point it was said we could do Sloans 3F8 which if we wanted to set up a consulation we could, but we really didn't want to go 3F8 unless we had to. After Dr. Sholler reviewed the scans, she feels that Emily is having excellent response from the Nifurtimox Trial and she said have another 1 to 2 rounds of it along with the Zometa and melatonin.  We did explain all the bone pain that Emily experienced during round 5 when she had the Zometa and I asked her how can we stay on top of it?  She said I can give you a prescription of Decadron and you can give it to her at the start of the pain and that should help.  I asked her about platelets taking longer and longer to recover.  She said what we can do is instead of 5 days of the chemo is do 4 days, so on the 5th day she would actually receive the neulasta. Because we finished the 6 round trial, we are not required to follow it to a "t", so we can work around things and do what works.  So we will do the nifurtimox 3 times a day again, along with 4 days of chemo, zometa on first day and the melatonin at night.  Also because the 6 round trial is complete, she doesn't have to start next week, she can go to school and enjoy being a kid and go to school and meet her friends, enjoy being a "normal" kid in school, this is what we want her to do, she deserves this. While we were there, we asked her if Emily would qualify for compassionate use of CH14.18 and she said she would call and find out, but felt that she could work it out and if they approved it, we could do it right at our home hospital and would only need to come to Michigan for scans as we are already doing.  While talking with her, she said you know let me call while we are sitting together.  She called and has already starting making connections and will see what she can do, but that it would take a couple of weeks.  So, we are hoping to hear from her soon that she made the connection and they are going to allow Emily to get the CH14.18.

Tonight we were watching the Stand Up to Cancer that was on.  It was amazing that they talked about Childhood Cancer, and one of them was about Neuroblastoma. Childhood Cancer needs the awareness and this is amazing.  The amazing Taylor Swift sang a song called "Ronan" about Ronan Thompson who passed from Neuroblastoma.  Have you purchased this on iTunes yet?  All proceeeds will go to Childhood Cancer Research.   Ronan is currently number 2 on iTunes, and we want to see it make it to number 1.   During the show Emily said, "Mom do I have cancer?"  I wasn't really sure what to say, so I looked at Doug and said help me, he said just answer her.  I said, "Emily, what do you think neuroblastoma is?"  Emily said, "Cancer!"  Tears started to swell in the eyes and I could see Doug's face, but we followed her lead to see if she had any other questions.  She didn't question anything, so we moved forward.

Emily is really looking forward to starting school next week, so Monday is a big day for her.  Her platelets are low, so she won't be able to do recess, or anything wild and crazy, and Tuesday morning she will have clinic to check her counts to make sure everything is looking ok. We are really excited about her starting, but extremely nervous but aren't all parents when their kids first start kindergarden?  Yes they are.  Emily will do fantastic.  The Monkey in my Chair has been great for the kids at Crenshaw so they know they have another member of the class, and know when the monkey is there that Emily will not be there.  The monkey goes with them wherever they go, so I think this is great for the kids and for Emily.  Today the Education Liason came to talk with the students about Emily.  We are not really sure how it went, but we imagine that it went well and we are happy that she went out to do that and talk with the students about Emily.  To all the parents of Emily's classmates, we are open to any questions that you may have, just please let us know.

So, here is where we stand.  We are very happy with the outcome, and feel that Emily is going to make a full recovery, while we still have a long road ahead of ourselves, she is doing amazing right now, and her weight is looking great right now too. We hope that this next round or 2 of the Nifurtimox trial knocks the 3 spots out and off to CH14.18.

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

Tuesday, September 4, 2012

Change of Plans

Most things are not always set in stone, and for that you just have to be flexible and go with the flow. Earlier tonight we received a call from our pilot that has flown us the past few times and he wanted to go over flight times. He said the admin had written Wednesday on the papers and he wanted to let me know that he had no way of doing Wednesday because he had prior engagements that he had to do that day. He said that he could do Tuesday afternoon if we were able to leave at that time.  Of course we needed the flight, so we will be leaving tomorrow instead. We have lots of thing that need to get done prior to leaving tomorrow, but I think we will get everything done and be alright to go.

We must admit, our anxiety this go round is much more than we thought it would be due to the upcoming scans.  We really thought we wouldn't be, but we really want to see clean scans much like what we saw here at VCU, and that is why the anxiety is so high.

Tomorrow also starts a new journey, my oldest, my 10 year old almost 11 year old is starting 5th grade.  I can't believe she is starting 5th grade. Jessie, I am sorry I won't be there tomorrow on your first day of 5th grade, but I hope that you have a great day and I look forward to hearing how your first day went. Had we not had this journey that we are on right now, Emily would be starting kindergarden tomorrow.  Its still hard to believe that we are saying kindergarden.  We are still in awe that she is 5 and starting kindergarden. I know she is excited though and she deserves to be excited.

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

Today is day 3 of spreading the awareness... Did you know? Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

Spread the awareness!

Sunday, September 2, 2012

Lots of "News"

Its been pretty quiet here since the last update. Emily has had clinic visits twice a week, which has consisted of platelets and blood. She hasn't really complained since earlier this week about her toes bothering her, so hopefully that side effect has gone away. Her weight continues to go up and she is eating great, she is up to 28.1 lbs.

We have lots of "News", meaning a lot of new things coming into our future. Monday we got her registered for Kindergarden.  Wow, did I say kindergarden??  It is so hard to believe that Emily will be starting kindergarden and Jessie will be in 5th grade and Brianna will be starting daycare. Like I said we got her registered and was even so awesome that the day I went to register her, I was able to meet her teacher, Mrs. Tetlow.  Mrs. Tetlow is a 8 year cancer survivor so talking with her about Emily so very much understood what we were going through. Emily is signed up for homebound so that when she is not able to be at school due to treatment, she will have a teacher come to the house or we will work something else out.

Emily and Mrs Tetlow.  She was reading to Emily.
Thursday and Friday they were doing orientations for the kids.  Emily wasn't able to go and Jessie did go and meet her teacher on Friday. Mrs Tetlow was pretty amazing to wait around to meet us on Thursday afternoon after everyone was gone (at 430) to meet with Emily and to be able to meet Doug. Mrs. Tetlow is great with Emily and we feel very comfortable having her.  She will let Emily make the calls and they won't use the clinic because of germs.  She said she did talk to Jessie's 5th grade teacher in the case that Emily does ask for her.  Also while Emily is not in school, we have brought a Monkey to Mrs. Tetlow, called Monkey in My Chair, so the students will know that they have another student and her name and the monkey will go with the class where ever the others students are.  Mrs. Tetlow also met with with the Education Liason from VCU and she is working to make sure she comes and talks to the students about Emily and we will write a letter that will go home to the parents on the same day that will help the parents to talk to the kids with their questions.  So I want to also open this up that if any of the parents have any questions at all, to please let us know. Emily seems to be excited about school, but we know she may not make it the full day and if she doesn't that is ok.

Emily and her Monkey in the Chair
School actually starts Tuesday, and honestly I can't believe that Emily will be starting school soon.  I know I will cry as I can see Doug having some tears about it too, I to have cried every year that Jessie has gone off to the next grade.  I have every year taken Jessie on her first day of school, and this year will be the first year that I won't be able to since Emily has clinic,, which bothers me.  But it isn't like us to not do something another time, a date is just a date. So we will celebrate the next week as the first day as we will with Emily for kindergarden and Brianna for daycare. Brianna starting daycare the same day as well, will be hard on us and this will be the first time she has ever been in a setting like this.  We really want to thank CCDC for all that they have done and that they will be working with Brianna.  We are so thankful that Brianna's teacher will be Mrs. Robin, whom was Emily's first teacher there as well.

Lots of new things to be happening here soon, so it will be a lot to take in and adjust to.

On the medical front, next week we head to Michigan for end of trial re-evalution scans and bone marrow.  We did learn that Wings of Mercy will be able to work with us and get us a flight there by the pilot from the previous times and a different pilot to get us back.  So we are very thankful to have a flight and get that taken care of.and to also have a car while we are there.  We would have drove if we needed to, but there is still possibiities we could be traveling for future treatment, because we are really not sure where we will end up.  We are having the doctors working on seeing about antibodies because that is our goal.

Don't forget it is September, and it is childhood cancer awareness month, lets continue to spread the awareness like we have the rest of year.  We need to make everyone aware.
We wear Gold for Emily