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

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. 

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.

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.

Hating Cancer

Its been a while since we have updated, and mostly because its been a lot going on and we have been busy. Last Thursday Emily had clinic and it was a pretty long day.  That morning Emily complained that her legs were hurting and she wouldn't walk from neuropathy, so she had to be carried out to the car. She lost about a pound and Daddy and I decided we would stop the Nifurtimox knowing that if we didn't she would continue to lose weight and they would win the battle this time and admit her. Emily had been doing a lot of sleeping since her last time at the clinic, which we let them know, and when counts came back Emily needed both platelets (at 5) and blood (at 7.4). She was given benadryl because of her allergic reaction to the platelets, well an hour after giving her platelets she had another allergic reaction, but it seem to go away quickly and they were able to start the blood back up.

Thursday evening Emily started to complain mildly of a headache, but because she was tired and just wanted to go to bed, after a long day, I figured it was just from that.  Friday she complained that her ears were hurting, she was given tylenol and a little later she was still complaining.  By evening, she was complaining it was only one ear and it was hurting pretty bad causing her to cry. We talked to the Dr. Gowda and checked to see if it got any worse would it be ok to take her to KidMed as long as no fever to check her ears.  He was ok with that.  She moaned and groaned all night, but Saturday morning she was complaining the back of her head hurt again and she was holding ice to her head.  We tried Tylenol and after a little while she was still complaining, so we called the on call to see if we needed to bring her in.  They were not concerned or didn't seem concerned since she didn't have a fever and wasn't throwing up and said we could give her a little something stronger than Tylenol, like Tylenol with Codene and wait to be seen on Monday morning. We ended up having to give her this a few times and some over night, because of pain.  Sunday, she wasn't complaining as much about her head, but was complaining about her right upper leg near one of her spots that she has had since diagnosed. She wouldn't walk and when she was she would limp and wanted ice for her leg. It hurt to touch.  We did look at her leg and didn't see any bruises and didn't see

Most of the weekend was watching Emily lay on the couch, she didn't want to be messed with and she didn't eat much either. She slept a lot and complained of pain.  Of course this brought Doug and I's mind to what in the world is going on?  Progression? What could it be?

Monday morning she had clinic again, and we were going to let them know about our weekend.  Emily was still complaining her leg was hurting and Daddy thought maybe it is from the Zometa.  The problem with the Zometa, we knew we couldn't ask them, since they didnt' have any experience on giving it, so we would talk with Dr. Sholler about it. As I walked in with Emily, Elaine, our nurse, asked how the weekend was and said she heard about the calls that were made. So, she also had some concern about what was going on. Counts were checked, and because of the concern of the leg, Dr. Gowda ordered a xray just to have it checked.Platelets low again (at 8) so she would need them when we got back.  Xray was done and reviewed and we were advised that she doesn't have a fracture, and that there is only abnormality of the bone, but they don't know what the abnormality is from.  Whether it be from radiation, from the spot or from the disease doing whatever. So, while the Xray only gave us good news in that there isn't a fracture, it didn't really let us know anything else, and they can't really compare anything because VCU doesn't do scans.  It was said send her home after platelets on Tylenol w/Codene and we will revisit this on Thursdays visit and see how she is feeling.

Emily is finally starting to come around again, coming off the couch just a bit more and actually trying to eat a bit more.  She isn't complaining as much about the pain in her right leg, however it still hurts to touch and she isn't limping much, but you can tell.  She freaks out when you try to touch it, but isn't complaining about it much. As of Monday she was still neutrapenic, so we have been hanging low at home, together as a family.

This cancer journey is a journey that is hard, hard on everyone in the family! Not only do we hate cancer, we hate everything that comes a long with it.... When little things like this happen to Emily, our minds immediately run to the worse and we hate that, but it is what happens.  While we are not sure what is causing the pain, and why it still hurts to touch, we are hoping that as her counts go up, that she will feel better and the pain will also go away. Right now only time will tell and we will see how things go.  We will see how she is doing when we go back for counts on Thursday to check things out for her.  Dad and I try to remain as positive as we can, but sometimes it is hard, but we are trying really hard to be positive about this.

We still get emails on where to send donations or where to send things, so I just wanted to let you all know, thank you for everything that you do for our family and for all the lovely things that you have sent Emily to bring a smile to her face.  Thank you!.  If you want to make donations, you can go to www.emilyhubbel.com and click on the donate button or you can mail them to:

PO Box 5383

Midlothian, VA 23112

Your generosity and love means so much to us, and we just want to say Thank you!. I don't feel that we can say Thank you enough to all of the wonderful things that so many of you do for us.

We will update you all to let you know how Emily's appointment goes on Thursday and how she is doing.  Her spirits are starting to pick up some and she is starting to smile and laugh here and there.  She has grown very attached to mommy lately and hasn't wanted mommy to go to work in the morning, which makes it really hard to leave.  We are so proud of her and all that she does.  She is really ready for treatment to be over though, and she has made that very clear to daddy and I, she just wants this to be over.  We are right there with her, and hope that we will have an end in sight, but at this time, we just don't know. Her saying she was done with treatment, and didn't want to come to clinic anymore, brought tears to Daddy's eyes, because we wish we could be done with this too.

Sorry for the long update and if this update seemed all over the place, but thank you for hanging in. Remember to hug and kiss your kids and tell them how much you love them, you never know when one day those things can change.

The Joys of Neutropenic

Emily with Stewie, "Dogs on Call" on Friday's Clinic Visit

Here we are already a few days past the last day of chemo, which was Friday.  Friday went well though, Emily did great with the chemo transfusions and because it was Friday, they wanted to have her counts checked to make sure she would be alright for the weekend. Emily was so happy to have her pictures taken with Stewie from the "Dogs on Call" Therapy Dogs and she will be in the 2013 Dogs on Call Calendar. Counts came back and we had noted earlier with Emily's nurse that we were seeing an increase of tiredness.  After chemo, we were going to volunteer our afternoon and help with the Anthem Lemonade Stand, however Emily's counts stated otherwise.  Emily would need a blood transfusion. So another long day in the clinic, overall was a pretty good day. WBC and ANC was still looking good.

Turtle that we found in the yard

The weekend was absolutely great.  We enjoyed spending time with our bestest friends and just enjoying company and having a relaxing time.  Saturday was such a gloomy day outside, so much so it appeared to look as it was evening most of the day,  that we stayed in the house all day and watched a few movies and enjoyed have our friends be at our sides. We enjoyed pizza, laughing, talking and just being together.  And for the first time, we saw a turtle in our yard. How neat is that. We learned about the turtle we found and the girls and I even fed the turtle some lettuce.Thank you so much for coming and visiting.

Monday came all too quick, which meant another morning of time at the clinic. Counts scheduled for this morning and the neulasta shot. Emily has really become well aware of scheduling and when she needs to get that pesky shot that she despises. Just like it used to when she would need to get her port accessed, the fear of the shot to come, overcomes her.  The tears start and then the crying takes over. She tries so hard to be strong, but sometimes she just can't hold the fear in.  As you try to console her, all her mind allows her to think about is the shot to come and she can't let the shot out of her mind until it is over. For some reason today as I was sitting with her trying to console her, my mind ran back to the time when she was first diagnosed and they were trying to get an IV and was just having a hard time and her screams were all that I could hear.  No today wasn't like that, but I sat thinking about all that this 5 year old little girl had gone through and wished she could be doing anything else but this.  If none of this had ever happened she would still be in daycare, but today we continue to fight the fight with lots of hope along with many other families, old and new. She did get the shot, and did ok with it. She did scream as it the needle went in, but once it was done, she was ok and ready to get the port out so if she felt up to it later in the week, she could get into the pool.   Today she didn't need any blood products however, platelets were pretty low (just not low enough to require a transfusion but low enough to cause a bruise where she received her shot on her leg. Daddy also had to get a shot today, so telling Emily about daddy getting a shot also seemed to help calm her down a little bit. Todays counts also revealed she is neutropenic, the joys of neutropenic.  Back into the world of masks, not around people, no leaving the house, except for the clinic only and the fears of fevers and worse yet inpatient stays.  We are noticing the increase of crankiness, fussiness from the nifurtimox, but she is handling it well, and again we are proud of everything that she does.

The amount of food that Emily is eating is already starting to decrease.  Weight has already started to decrease as well, not much, but 26.6 lbs down from 27.5, but still for her every little bit is noticeable and very well taken note of at VCU.  Tonight we had dinner, and Emily took one bite and it was all she wanted.  She fell asleep about 730PM and just recently woke up, she said she is hungry, so the hope is she will eat a little bit. Daddy and I will continue to keep up with her and make sure she eats as much as she can so we don't face having to stay inpatient and receive TPN or anything else.  Emily will have clinic again on Thursday for count checks, but I have a feeling we will be watching her closely in what may mean that she will need to have to go and get platelets.

We ask that you send out lots of love and thoughts for Emily as the next few days, we will be watching for fevers and/or bleeding and we hope for no problems.

Brianna, Emily and Sue before they were heading.  Thank you guys for visiting, we miss you guys so much!

3 Days Left

Round 5 has started... Yesterday was a very long day in clinic and one that I know we are all glad that is over! We had a couple of issues yesterday one of which was getting Emily the Zometa that Dr Sholler recommended! VCUs pharmacy has never given Zometa to children and we didn't have it written in a protocol! Zometa is actual in a few clinical trials for neuroblastoma (Bisphosphonates) that is to help with metastasis in the bones like Emily has! They were doing research trying to locate where Dr Sholler got the amount that she asked Emily get! Finally the pharmacy approved her getting the Zometa but they were going to give her less than the amount than Sholler recommended, and we wanted her to get what was required! Then Dr Gowda was able to pull up some references for the 4mg/m^2 dose and they approved the 2.4mg! However prior to getting that she also had to have antacids to help the stomach since Zometa can upset the stomach, the other issue was Emily's specific gravity on the first day has to be =1.010 to start the chemo since she is getting cyclophosphamide (one of the chemo she is getting). It took her giving her urine 3 times to meet the amount and she finally met the specific gravity about 1pm so then she had to wait for the zofran! The pharmacy was one of our biggests issues yesterday!

Yesterday was also a bit of a hard day seeing one of Emily's friends completing treatment for neuroblastoma and having the broviac Hickman line removed! We are so proud of her and their family for being done and getting through such a hard journey, but they made it! But Emily should be done with treatment also now and just knowing she is not there and how much longer she may have makes it really hard! Emily fights this journey with all of her might and we too fight with her! She too asked often lately when will I be done with treatment? A question dad and I have a hard time knowing what the answer is...we just continue to have hope that what we are doing is the right thing! Emily daddy and I will continue to hold your hand and walk along with you during your fight of this journey!

Emily will be starting kindergarten in september and she is so excited about going and being with other kids and just having a somewhat of a normalcy to her! Daddy talked with her about school and her having hair and gave her a choice about hair and if she wanted to have hair! She told daddy she wanted to have hair so we told her we would figure out what we needed to do to get her hair for school! I was reading Emily griffins update and her mom was talking about getting a wig through VCU which I had no idea, so I inquired! The child life specialist Katie brought a form that needed to be filled out, "Application for Hair Replacement". Claire brought a box over yesterday that had a wig that they make and show the real hair that you can brush and color samples for hair, we were able to pick out a color that was the closest to her normal hair color and it is being ordered! The hair is real hair that can be washed, cut and styled so it will be nice for Emily to have and feel comfortable about going to school with! Thank you so much to this amazing organization "children with hairloss" a non profit organization.

Day 2 of round 5 went off with no problems today! Thankfully it was a short visit!! 3 days left of this round and we continue to hope she has no issues! Counts were checked Monday and they will be checked again on Friday to make sure she is good for the weekend!

We are looking forward to the weekend, Emily's bestest friends Sue and Jojo will be coming in Friday and staying at Hotel Hubbel to visit! We can't wait to see you guys!

We will continue to keep you updated on how Emily is doing! Emily has been asleep tonight since about 730pm tonight, not sure if she is having side effects from the chemo or the Zometa, but hopefully tomorrow she won't be as tired!

Fever Watch

Fever watching sucks! It sucks for her because she is just exhausted and wants to sleep and it sucks for us knowing the meaning behind it and what will happen should she get it! It's De ju vu (spelling), we remember this like it was yesterday! This is one of those things we hoped would not happen!! Fears of fever, because if it goes up it just means she will have inpatient stays! We have not had an inpatient stay since January for MIBG therapy and Emily cried tonight when we talked about getting a fever and what it would mean! Auntie was here and listening and watching her cry, brought tears to her eyes! Kids hate the hospital, so the fewer the stays the better but what can you do! Our hearts hurt tonight just knowing what is coming! We are still home, but please send your thoughts they just stay away, she needs a break!

MIBG Results 2-22-12

I know everyone is looking for an update on how Emily's scans turned out...we were both very nervous about the results and especially with Emily complaining of pain in her right hip! The results came back with written terms: " whole body images demonstrate multiple foci of increased tracer uptake in the following areas: the right side of the skull, the lumbar spine, pelvic bones bilaterally, proximal and mid shaft of the femurs bilaterally. Compared to the prior study of 1/10/2012 , the intensity of some lesions has decreased." This means that Emily's scans are stable and some of the lesions are not as bright. Dr Mosse seemed surprised by the results but happy.

This means Emily is not progressing and is not regressing but the intensity of some are lighter. While there is nothing to celebrate as of yet, we are ok with the results and just happy to have Emily here with us and enjoying life.

So, what's next...we still have a long road ahead of us...we don't have an end in sight (I asked) and what is next is low dose chemo. Low dose chemo until something else comes open. Currently Emily does not qualify for any trials, mainly because she is not progressing and because they don't have any clinical trials that are open. So we are on a bridge right now... Low dose chemo it is... Emily will start on a antibiotic tomorrow that is to help with the major side effect which is diarrhea and then come Monday she will start to different chemos at home. Irinotecan and temozolomide. Emily will do two rounds of this which is 21 days per cycle. So the first 5 days will be an oral liquid which is the irinotecan (but we are awaiting approval from the insurance on this one since they normally do it by IV ...if not approved then Emily will have to go to the hospital for two weeks everyday Monday thru Friday to receive the irinotecan) and the temozolomide which is in pill form. After the 5 days she will have 2 weeks of of no chemo and then start the second round. After the second round we will go back which is approximately 45 days for scans to see if the chemo is working and re-evaluate.

We are still nervous about what if this does not work... Dr Mosse said this works for some and they are on it for years but then others it does not work. We asked about hair loss and she said no but on the side effects it says the most common effects are decrease in number if red and white blood cells and platelets made in bone marrow, diarrhea and hair loss. So we are going to question that. Emily will only have to go once a week at our home hospital for count checks.

Tomorrow is surgery day...removal of broviac line and insertion of port. This will work out well with the chemo that Emily is being put on that it will not need to be accessed as much. So ready for emily to be able to enjoy the pool, taking a bath and just normal things and not be left out of the summer activities...this is why our hope would be to sometime take the girls to the great wolf lodge in Williamsburg!!! She will also have her bone marrows checked for disease while she is under tomorrow. She will not be inpatient but we have to be around for any problems and also to get the chemo to take home with us. They want the chemo to start Monday.

Doug and I are still talking about getting a second opinion, if you will, from Sholler in michigan on this and if we are going in the right direction. Doug and I want to do what is right for emily and rid her of this horrible disease and move forward. We also asked Mosse about Sloan but she didnt feel it was a good option for Emily right now.

So we charge in...we move forward... Ok with the results but our goal is still to be Ned... The thought of having to keep Emily on a chemo for long term just to not progress is not something we want...no end in sight, but we move forward and just happy she is happy and not in any pain....

Will update after surgery tomorrow on how she is doing.

1 Week before Philly

Thank you so much Amazing Hats and Sue for the beautiful hat

Its Monday evening, and I just wanted to update...first Facebook updates:

February 12: Tomorrow Emily has clinic. We are thinking that her hemoglobin is low because she has had a lot more downs than ups the past two days. Just very low energy and tired and clingy to mommy!

We also have 1 week from today before we head to Philly and we prepare for a week of scans, with surgery to remove hickman line and replace it with the port and also a bone marrow biopsy.

February 13 @ 1230PM: Emily is still here at the clinic saying she is tired! It will be a long day here because Emily needs a blood transfusion! Platelets went to 59, small increase but better than decrease! ANC is still a little low but ok! Have a good day!

February 13 @ 8PM: Emily received her "super blood" (blood transfusion) and has much more energy! It was a long day at the clinic. Emily has been complaining of pain here and there, but we are hoping it is nothing!


Over the weekend, Emily had a lot of ups and downs and she was pale a lot over the weekend. We could really tell Saturday night, that she just wasn't normal, so we figured her hemoglobin must have been low. We thought we might be taking her to the ER to get a transfusion if it has gotten any worse.

Sunday afternoon Emily complained that her knee/leg hurt were she has tumor and of course Doug and I both worried. Tonight she has complained that her right hip hurts. Again both Doug and I worry, but scans are a week away from tomorrow. Our hopes of course is that it is nothing. But as a cancer parent each body pain is scary.

Yesterday I received an email from another family whose daughter has NB where they had received an email about a family whose son was diagnosed with Neuroblastoma here not far from us and if people wanted to send post cards (I am keeping this information confidential because I don't want to spread information about a family unless they would like their information out there). Doug and I were able to locate them and contacted them just to let them know that we too are a NB Family and we are here should they need anything at all, their son was at our home hospital. While I didn't hear back from them, both Doug and I thought a lot about them.

Emily had clinic this morning to have her counts checked and her thyroid levels. As we suspected, Emily did need hemoglobin, because it was low. Her platelets went up by 4 to 59, while it was a small increase it was still so much better than a decrease and ANC went up a little bit, but still low.

We knew the family was at the hospital, however we didn't know if they had left yet, Doug thought I should stop by and introduce myself and just let them know again that we are there should they need anything. I will be honest I tried to find any reason that I could to talk myself out of it, mostly because I was nervous...I was nervous knowing how overwhelmed that they would be with their son just being diagnosed of this fearful disease, being shy about meeting someone new, and then walking back on the 7th floor of the hospital where we have not been since June of 2011. Thanks to my husband, it was a nice gesture to introduce myself and afterwards I felt better letting a family know we are there to help when being introduced into a world of the unknown. The world of cancer is scary and there are so many unknowns. I walked onto the floor and the fear I was worried about, my nerves and everything that we had gone through on this floor overcame me, but I didn't turn around. My husband was right...while we didn't have anyone immediately to talk to about NB, eventually we did and even had texting friends that were there anytime of the day and they were amazing and very helpful, and I knew it would be helpful for them. I also knew if they didn't want to talk, that they would have asked us to leave the small gift and we would have been ok with that. The security people had not changed and they remembered me and said go ahead mom, and I had to let them know I don't have a child on the floor, I am here to visit another child, she was confused and of course I explained. Dad came out and I introduced myself nervous and the pain and fear was in dad's eyes, I could see it and the reality of what I was nervous about hit, everything that they were going through just hit me and were flashing in my head when Emily was diagnosed. Dad took me back to meet his wife, and happily I could see that they were getting ready to leave (for home after 11 days of being in a hospital hearing all the things that they never wanted to hear), but I did talk with mom for a little bit. Mom too, I could see the fear, the pain in her eyes for their son, all of everything that I remember Doug and I going through 14 months ago, which all of the sudden seemed like yesterday. Doug and I sat on that same floor for 12 days and heard those same words that they heard, it all flashed before me. For parents who never cried before, they cried before with fear and worry about their child and all of this flashed before me as I was walking back through that hallway. I was strong, because they were receptive to my coming, and I held myself together knowing that they needed me too. I saw the nurses, again most of them were the same, that were there before, nothing had changed except for other families (newly diagnosed or those I have never seen before) going through the same things that we had gone through and the fear and worry about their children. I was happy that Doug pushed me to do this, because at the end of the day, it was the right thing to do. Mom was receptive to my coming as I explained to her that I was really nervous and thought this might be too much for them, but she was glad that I was there and that she knew she would have lots of questions and asked a few while I was there. I saw their sweet little son and I just wanted to hold him as he was crying wanting his mommy (just because I remember our sweet Emily being this way), he was beautiful in all ways and all I wanted to do was say that I'm sorry and sorry doesn't even touch what they were/are and will be going through, or what we are going through or what any other cancer parent is going through. Mom and Dad I just want you to know that Doug and I there for you to help you in any way that we can, to answer any questions that you have, we are here 24/7, please don't ever hesitate.

After leaving the 7th floor and getting into my van, I broke down. I broke down because I was glad that I had stopped by to introduce myself and just to let them know we were there, but also because everything that flashed in front of me. Again in the long run it felt good to be available to a family going through the unknown and going home today after 11 days thinking when they went in they wouldn't be there long and everything was ok.

Please be aware that families go through this everyday and oncologists are telling parents their worst nightmares several times a day, are you aware??. Today was a day that I needed, needed to get out there (and be more open then hiding behind a computer when we want to "give back" and honestly I feel that Doug and I were able to "give back" today!

Emily received her blood transfusion, and was a totally different kid, she got super blood and she had so much energy. During clinic she also had her thyroid levels checked since the MIBG treatment can cause a lot of thyroid problems. I called to see if the results were in after Emily was already gone and Elaine called back to update she said one of the levels were a little bit higher than it should be and the other was normal. She was going to check with Dr. Gowda to see if there was anything that needed to be done or just to keep a watch on it. So this will be one more thing to add to the list of worries, but we won't worry too much. We will send an email to CHOP just to have them be aware and if they think we need to do anything different.

The pains that Emily has complained about here and there have us concerned, but we have to hold up hope that it is nothing and just those things that every child deals with or just something else so simple. We do leave Sunday to head to Philly! Scanxiety has surely started if not already been there with the pending scans coming up. CHOP doesn't have any plans for trials for Emily yet, we were told... "We will need to take things one step at a time in order to decide what is the next best step for Emily. Emily's next disease evaluation is a couple of weeks away and we will need to use all of the information we have at that time to make recommendations." (this was from a few weeks ago). So all we know is all the trials that we have read and what Sholler said that she could do for us, so we are waiting to see what CHOP can do for us and our sweet Emily. Platelets are no longer an issue, so we don't want to hit anymore roadblocks, we just want something that will help Emily! So the pending scans have us both a bit a nervous about what they will show and how we will move forward. February 24th, while we are in Philly, we will also be celebrating 5 years of marriage. Anything that we have to do for Emily we will do, ANYTHING, ANYWHERE!

Update: I am still working on getting together care packages (bags for newly diagnosed families containing things like deodorant, shampoo and conditioner, razors, lotion, toothbrushes and toothpaste, hand sanitizer among other things to help those newly diagnosed families in the hospital) and they are coming along nicely! The stash is growing and we are excited to be "giving back"! The coupons that people are sending from all over the place, are so helpful and continue to be of huge help, so please keep them coming! Like I said the stash is coming along and I think when we come back from Philly we will be able to start working on those bags to take up to VCU for the social workers to give to newly diagnosed families.

Update #2: We have people asking where to make donations since some fundraisers are getting in the motion and I just wanted to update everyone and let them know how they could make donations and where:
Emily has accounts in her names at:
--Dominion Credit Union
--Wells Fargo Bank
--First Citizen Bank
****Donations may be made at any of those locations by giving Emily Hubbel's name and they will make sure the rest is taken care of.
--Through the website at www.emilyhubbel.com
--Mailing to PO Box 5383, Midlothian, VA 23112 where gas cards can be sent as well (which is definitely very helpful with the traveling)

Make sure you hug and kiss your kids each night and tell them how much you love them! Good Night!

Week 2 Post MIBG Therapy of Round 2

Emily opening her package from Sue with a Justin Bieber Notebook! 

Two weeks have passed since Round 2 of MIBG Therapy.  We have 3 weeks left before we head back to Philly and see how this Therapy did for Emily. And yes, I am counting down, counting down because of the fear of what it will bring or that we learn.  Last time we had 6 weeks, but this time they scheduled her re-evaluation scans at 5 weeks. 

As you recall Emily had her stem cells given back to her last Monday, which this leaves her with 3 bags of stem cells left, Thursday she had clinic and needed both platelets and red blood because they were both low.  Her ANC and WBC dropped again, so still being very careful of her not getting sick.  Doug was sick for a few days, so he actually slept on the couch not to get Emily sick. However since being home from Philly this time, Emily just hasn't been herself.  She seems very tired often so much easier, she isn't eating much (where we have started the periactin again since she isn't eating much and her weight is down), and honestly just not herself.  Some days she has been very quiet, not saying much but been very whiney and she has had a few days where she has been saying her stomach hurts (which has gone away after giving her some zofran). Monday, Jan 30th will mark 7 days from when she received her stem cells back, so we should start to see them working within 10 to 14 days.

The past 2 weeks since we have been home have been really hard. Hard because we have a lot of questions, so we have been asking a lot of questions to our onc here at VCU, reading a lot anything and everything, and hearing a lot of children passing and honestly we are scared.  Scared about all of this and what it all means. Last night Doug couldn't sleep, and he was up all night reading and reading, he couldn't stop. He is again reading tonight while I am updating.

Thursday we did speak with Dr. Sholler from Michigan via phone conference, she is one amazing women and knows her stuff. Dr. Sholler told us yes we have some options, but only if Emily's platelets are at 50 or above, meaning they have to recover.  If they are not, we won't have any options anywhere, so we are very hopeful that we start to see her platelets recovering soon..  She says since Emily has never had a bone marrow issue, then her platelets and hemoglobin should recover on their own.  However, when we go back to Philly on the 20th, Emily will have her bone marrow checked again, since her last one was in November. Dr. Sholler has told us what she has available right now, but before we get too ahead of ourselves, she wants to see Emily's scans, so we will send those out to her over-nighted tomorrow.  We may be taking a trip to talk with her, but we will wait to see what comes out of her looking at Emily's scans. We are trying to stay ahead of the game and just know what we have available.  

Overall, we are all home together and enjoying our time together. However this time home compared to the last time, it so much different because our minds are not where they were before.  Right now we are just trying to keep our head above water.  Its scary, we are seeing CANCER everywhere out in the community, what is coming to this world.  We really need some awareness for Childhood Cancer and the awareness.of Neuroblastoma. To keep this post from going array, I will leave it here...but make sure you hug and kiss your kids and tell them how much you love them.

Update on somethings going on right now...

--Love For Emily Fundraiser, continued until Feb 24th. Check out www.emilyhubbel.com to learn about Emily. Click this link to help out if you wish/can.

--will have more information for some fundraisers that are being worked out right now.

--We are working a project ourselves going on right now...we are collecting (not expired) coupons for items such as; shampoo, conditioner, chapstick, deodorant (men and women), toilet paper, tissue, hand sanitizer, razors, shaving cream (men and women), womens needs and many other things.  Since we don't have the money either, but we really want to be able to give back and pay it forward, so we are using these coupons to work out the deals at several different stores to get these items for free to make bags for newly diagnosed families at the Children's Hospital of Richmond.  My sister in law, Tricia, is getting some Team Emily bags made and once we have enough to make at least 30 bags, I will be teaming up with Connor's Hero's who makes bags with different items in them for families as well. If you are interested in helping out with this cause, you can send your stuff to PO Box 5383, Midlothian, VA 23112.  

Radiation is Done

I have found that writing these posts, get harder and harder.  I sit down to start to write, and my mind wanders and I go to my email and reply to emails, then come back, I go to facebook and read up on the many of the families that we follow, and then come back.  I do this with a lot of things, but I have found this to be moreso now than ever before.  So, I apologize if my posts ever go random, but its the mind of a cancer mommy and just random things come and go.

The weather has turned and it is cold outside. Our family in Massachussetts even has quite a bit of snow on the ground. Since the weather at night has been pretty cold, we have started using the pellet stove again, and every time Doug says pellets, I am always drawn back to the night when this all started and Emily was laying on the floor in the basement complaining her stomach hurt and we were trying to hurry and bring in a ton of pellets from outside off the trailer so that we could take her to the ER.  Why pellets remind me of this...they just do because that night is forever in mind.  Whats even harder to believe is that we are coming real close to a year of when Emily was diagnosed, 12/23.  

So, as of yesterday Radiation is done.  We are all HAPPY to be done with this part of treatment, because it was a lot on us with the constant back and forth, driving back and forth, and her having to be sedated everyday.  Sedated under the "white stuff" propofol for 12 days is a little much.  Many say this is the easiest part of treatment, and while in some aspects I can see why that is said, however on Doug and I it was still very hard. I think a lot of this had to do with Emily coming off of the propofol and the side effects this had on her.  She had the worse temper tantrums coming down off of this medication and was very moody.  

Emily is now done with the "consolidation" part of treatment and will be moving forward to the "Maintenance" part of treatment.  At this point the scanxiety is in high gear and what will come of the scans.  Since a complete workup has to be done before she can start the Maintenance part of treatment which is antibodies. We really want to hear that the Emily is Cancer Free, so please send out all your love, thoughts and prayers that she is clear.

We leave Sunday to head to Philly and right now it is up in the air of where we will stay.  The feeling of the unknown of where we will be staying is really hard, because the Ronald McDonald House can't guarantee anything until the day off.  You have to call them between 10AM and 12PM to see if they have anything available and if they don't have anything available, you can get a hotel, which in the Philly area are EXPENSIVE.  So, right now we are preparing that we will be taking the camper since, staying at a campground is much cheaper a night should the RMD now have anything available on Sunday and looking and calling campgrounds in the local area. We feel lost not knowing what we are doing and where we are staying.  

Monday and Tuesday are very busy days with appointments and scans, and after talking to Dr. Gowda yesterday he indicated that Emily's complete workup (meaning HMA &VMA, creatinine check for kidneys, hearing and ECHO) should also be done there at CHOP so that Emily will not be all over the place and she have a complete workup in one place. So, just waiting to hear from CHOP to see if those can be next week as well while we are there.  We also have a meeting with Dr. Bagatell to talk in depth about antibodies.  She sent me a 17 page document that talks about side effects, and says that she would like for us to write down all the questions that we have so that we can talk about them during that meeting.  She said this meeting will be a long meeting to talk about how antibodies will work and what to expect and what Emily will be getting. So, it is going to be a busy time while we are there.

At this point that is about all I have as far as an update.  Radiation is done and we are very happy with that.  Emily does have clinic on Friday to make sure that she is set with traveling such a far distance on Sunday, but that is where we are. Oh and something Doug and I are looking forward to, we are going to have some Doug and Shannon time together alone, we haven't had this in a very long time, very long time and we are honestly looking forward to this!

Hug your babies and give them lots of love.

3 Days of Radiation Left

Emily in Reese's (from ReeseStrong) room on Day 9 of Radiation

Today was Emily’s 9th day of radiation, so she has 3 days left of radiation.  Overall treatment has been rather easy from our viewpoint, just physically and emotionally exhausting.  The radiation team has been amazing and very understanding to how we like to handle things and what we like.  While we still haven’t really seen any side effects from radiation we do understand that she can have some lasting effects after radiation for a few months. She gets tired easily, but the same as we noted before.   Friday we got her counts and her counts have dropped a bit, so we are just being careful and precautions still.

Emily’s oncology doctors have pretty much seemed to be non talkative with us, or so it feels.  After 1st transplant, we were having to meet each week for count checks and the doctor would come in, however after 2nd transplant after she was taken off of TPN, we haven’t seen a doctor, we only see the nurses and the nurses talk to the doctors and relay the messages back to us.  I have received a few emails from Dr. Gowda however all of which was directed to us from the nurse.  I’m not sure if this is normal during radiation, but it feels weird that they haven’t caught up to see how Emily is doing and how she is eating and so forth.  We did ask to see if the doctor was available today, and he was with other patients.  We updated our nurse of what we were going to be doing moving forward and if she could report that information to the doctor.  We thought we might have heard from him sometime throughout the day, however we did not.

We have learned that Emily is afraid to tell us that something hurts and we tend to believe that she is afraid to say if something hurts because it will put her back into the hospital or the worse possible being surgery.  We have seen her hold where her bandage is for hickman and will briefly say it hurts and when we ask about it, she says oh it doesn’t hurt anymore or it feels better.  Dressing changes have become a nightmare, they have to be done once a week and she absolutely hates them.  She will find any excuse she can to hold it off even if the current dressing is holding on by nothing but tape.  This past weekend, Dad ended up having to hold her down with me holding her legs down and dad holding her arms down for me to take the tape off.  By time the tape was off, she was wanting to get up and did not want to be held down, but they are emotionally draining on us all.

The mood swings and her ups and downs are off the wall.  While we know that she is only 4 and has a hard time understanding what is happening with her body and emotions, we too are having a very hard time trying to calm her and get her to understand. Some of the temper tantrums are of the simplest thing, such as she wants to wear a certain pair of pants, or to play the Wii, and when we say “NO”, she doesn’t like the answer, her mood swings are crazy and beyond just crying.  While, when they are over, she will say she is sorry and we move on about the day, we are noticing more of them.  This too is pretty emotionally, because sometimes we both just want to break down and cry with her.  Later we try to explain to her how she acted and what she could have done differently, she does not seem to understand that what she does was beyond rational.

I also want to say I’m sorry for anyone who got to see Emily’s temper tantrum today in the hospital.  Actually it was quite overwhelming for us, but she didn’t care that people were looking at her or us.  We know people were looking at us probably thinking man she is a spoiled rotten brat, but what they don’t know is what she is really going through.  Emily has endured 8 rounds of chemo, 2 surgeries, several transfusions, 8 days of radiation and just pure hell, this along with several hospital stays because of fevers and other things. While at some length we know she doesn’t understand what is happening and having a hard time controlling her emotions, we do know that she knows what she is doing and what is right and wrong.  But today she really flipped out at the hospital over a “donut” she wanted a donut.  Doug and I don’t like to give her sugar, and have bent the rules a little bit here and there with Halloween being here.  At one point I was carrying Emily out of the hospital trying to hold her and push the stroller while she was kicking and screaming.   The situation in itself was very overwhelming and made me cry and Doug upset with what happened and what she is going through.  Overall we know that when she gets upset, she gets very caught up in the moment and can't control herself.  The overall amount of pokes and prods and the hospital and everything else, she has just had enough and this is her way of getting it out.   Again we talked to her about her extreme temper tantrums, and she has apologized, and she realizes what she did was wrong, but in all honestly we just do not think she knows what to do when she is in the moment.  I cried just thinking about the hell that she has been through and can only imagine what she has going on in her mind of what is happening to her and why.

Emily has tears often, not from crying, but because her eyes tear up.  While we have wanted to ask her doctor, we have decided to just wait until we head to CHOP and talk with them about it and see what needs to be done, if anything.  This past weekend, we were carrying tissues around just to wipe the tears.  We are not sure if this is something from treatment or just something that she has.  Emily doesn’t seem fazed by it, however many people comment so we want to make sure it is addressed and not something to worry about it.

While overall things are going “well”, Doug and I still have a hard time just to function on a daily basis, get up and go on about our day.  We both have found that we no longer have the patience that we once had, and our stress levels are much higher.  Doug often comments that he feels that I am much stronger and hold this family together, however there are often times that I feel that I could just fall apart.  I could never say I don’t have days that I just want to cry or even cry often and wish that things were different, but honestly we have found the good out of this and that is the love we have for each other and some of the amazing people we have met. Yet there is a bad side of things to this life, but we try to make the best of them. What makes things worse is that people who don’t have a compassion to try and understand or even ask questions, they just stare and make faces or walk away when we are around.  Instead of asking questions to educate themselves, they just remove themselves and we want to tell people, “Emily is not contagious!”   Please don’t stare, and I have to admit that adults are the worse.  Children just don’t understand, and that is understandable and then other kids don’t even pay any attention, but adults are the ones that look and stare.  Please we would rather you not stare, just ask us, we will be happy to tell you about our beautiful daughter, because we want to educate.  Just because a child doesn’t have hair, and they have cancer doesn't mean they are different and you have to stare at them.   I promise if you took a minute to get to know Emily, you would love her just as much as we do.  And then you have others, who just stop to watch Emily and how loving she is and the compassion she has for her family and are in awe of her.   In reality, we are normal people, it is just our lives aren’t normal because of what our daughter goes through.  Our compassion of wanting to help others and to do something to make a difference in someone else’s lives as many have and continue to do for us is so strong that we can’t wait to “Pay it Forward!”

Cancer is no joke and I can honestly say it is heart wrenching to watch, painful to understand and devastating to go through but even more so to live and accept that each day that Emily can have side effects from the treatment that she has endured so far or even worse relapse.  Doug and I enjoy each day that we have with her and are so thankful for a wonderful and loving daughter that we have and the joy that she brings to others.  I don’t ever want someone else to have to walk these shoes and know what it feels like, or go through because cancer sucks!  I hate the word cancer, Fuck Cancer!

On another note, we received an email last night from Dr. Bagatell on Emily going to CHOP for antibodies with her schedule.  It is official and they have a schedule.  The anxiety has already started to build for us as she has indicated when Emily has her scans and we are nervous for those. Most likely Sunday, November 6th, we will drive out to Philly and stay at the RMH because Emily has a very busy day Monday, November 7th and Tuesday the 8th. Dr. Bagatell has been awesome and informing us of everything going on and sent me a 15 page paperwork to read about antibodies. Can we say overwhelming? She also asked if we needed SSKI drops for the MIBG scan?  We had no clue what they were, however I read up on them and learned that they are drops that the kids take to avoid damage to the thyroid from the iodine that is taken for the MIBG. I responded that we didnt know what they were and I think when she responded she was like, "Oh..." and then explained what they were used for, I think she understands what we are going through here.  Emily will have her bone marrow biopsy, CT scan and MIBG and we will have a thorough discussion with Dr. Bagatell about antibodies.  We will find out if she wants us to stay for results or head back home and get the call about results.  The next week, November 14th, Emily will be admitted to CHOP Monday night to get her ready for starting antibodies early Tuesday morning. The 1st round of treatment will be 4 days and Emily should be done on the 19th unless she has any problems.  Emily will be away from the hospital for Thanksgiving and we are very thankful for that.  CHOP is trying very hard to keep Emily away during Thanksgiving and Christmas. As we receive more information about CHOP and our trips we will keep you all updated, but this is what we know so far. CHOP social services has already been in touch with us to do the best they can to help us facilitate the stay at RMH. So, the traveling will begin all but too soon! However we are thankful for such a great place to facilitate antibodies for Emily.  

We still get questions from all of our supporters who want to assist and what we need help with and honestly at this point, gas cards, food cards and so forth are very helpful for us as we transition into traveling for Emily's next part of her journey. I know some have even asked how to make donations, and you can mail your donations to:

Hubbel Family

PO Box 5383

Midlothian, VA 23112

Everything is very helpful and means so much to all of us, we thank everyone for all the love, support and care you all have sent. 

Hug your kids and give them lots of love!