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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Friday, October 28, 2011

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!

Friday, October 21, 2011

4 Days Down

Thank you Mary Anne, we love them!

Emily has 4 days down behind her of radiation, which means 8 more sessions ahead.  She is honestly doing well with the radiation treatment end of things, however has a very hard time with the "white stuff", the propofol.  She now knows that the "white stuff" puts her to sleep and she really doesn't like that at all.   She also doesn't like the marks and stickers that they have put on her, but we have had to explain to her just like she had ickies in her tummy, she has them in her legs and we need them to be gone. While she accepts this, she doesn't like the fact that they are there.  So far she has not had any side effects from the radiation, and after speaking with the doctor he doesn't think if she has started any yet, she may not have any. However if she does have any side effects, it could be nauseous and soreness. 

The week has been exhausting, just exhausting, getting up early and having radiation for Emily and then working and with 8 more sessions to go, this has not come to an end yet.  Our main goal here is to get rid of the nasty spots and have Emily clear. 

While there isn't much new to report right now, the only thing that we have really noticed is Emily is very irritable, very irritable about anything and everything. While we are not completely sure if the way she is feeling is from radiation or not, we are starting to think it is the accumulation of chemo.  We used to be able to reason with her and talk to her, however we have noticed that doesn't really work anymore, either we just have to get her through it, or just give her a really big hug and hope it calms.

Wanted to send some love to Mary Ann for making some Emily's Journey Bracelets in Emily's favorite colors, they are wonderful and we absolutely love them.  Thank you so much for your kindness. 

Continue to send lots of love, thoughts and prayers as Emily continues treatment.  We are still waiting on a schedule from CHOP as to when Emily needs to be there for scans and when antibodies will start. 

Good night, give your kids lots of love and kisses!

We went to Spirit Halloween and they had bags and bracelets that you could buy and the funds go to VCU Child Life.  We were excited to see for the first time funds to go toward Childhood Cancer, it was really great to see this!

Sunday, October 16, 2011

Radiation Tomorrow

Radiation starts tomorrow, with tomorrow being the first day of 12 business days of being there first thing in the morning.  Dr. Bagatell had her radiation oncologist from CHOP speak with Dr. Song the radiation oncologist here at VCU and they feel comfortable with what will be radiated and feels that it will be ok for us to remain here at VCU to complete radiation. 

Dr. Bagatell is working on a schedule for Antibodies the next part of treatment after radiation.  Antibodies will include scans prior to starting and she will schedule those scans as well as a consultation to go over Antibodies and what to expect. As far as what we understand antibodies will be for 6 months, however it will not be consecutive time that we will be at CHOP, so we will be there for treatment and then coming home.  Once we have the exact schedule we will be able to update and let everyone know about our traveling that will be coming up. We did remind Dr. Bagatell that the holidays are coming up and we are pretty hopeful that she will work antibodies treatment around the holidays, so Emily can be home with family for the holidays.  Last year Emily wasn't home on Christmas Day and last year on December 18th will forever be embedded in our minds and what all she went through.

As for Emily, she is doing pretty well.  Her counts have been remaining well and even her platelets have started to go up, which is great. When she first came home her white blood count went up, however as of this past Friday it went back down a bit, but nothing to be concerned about. She gets winded pretty quickly, however she holds her own.  She knows when she is tired and she will rest and won't overdo it.  If she walks or plays more than usual, her legs will get tired quickly and the majority of the time she will ask for you to carry her, but again she does very well!  From the stem cell transplants, she had a quite a bit of discoloration of the skin.  We have noticed a lot of it around her neck, her panty lines, knees, however we will told that it will go away in time.  Emily is also loosing her finger nails which is from the accumulation of chemo.  We can see the lines where the new nail is coming in, however the older nail on some of her fingers have broken off and we have had to keep band-aids on those fingers.  We noticed during her 2nd stem cell transplant that her hair was starting to come back in and she had quite a bit of peach fuzz on her head, however since being home she has lost of that, which again was from the accumulation of the chemo.  But she is done with the chemo treatment, so her hair should be growing back now, we are excited to see this. However, Emily just takes all of this in stride and she just keeps moving.  She always amazes us, with how well she takes this.  She rarely cries, and when she does she has just had enough. 

So with radiation starting tomorrow her hemoglobin has to stay above 9, and if it falls below 9 she will have to get a transfusion.  Friday, I was called early from work to bring her in because if she needed to get a transfusion it takes 3 hours, they didn't want us to bring her in late. Got her there as quickly as we could and they were able to get her blood drawn and her hemoglobin was 8.9, so thankfully she didn't have to get one, however she may have to get one later this week.  She will need to have a clinic check once a week.

Thank you everyone again for your continued love, prayers and love, it means more than you can imagine. The past few weeks have been rather stressful on us, however we are charging forward as well as Emily and we will get through this no matter what we have to do to get there.

Quote of the day: "Stop being so busy. Make time to spend with people you love, no matter what. Make it a priority!! Tomorrow may never come and you may regret it!"
I took part of this quote from another Caringbridge page, and added the last part to it. 

Also, our friends, Dawn and Gene, are doing a fundraiser for Emily to help with traveling purposes, here is the information I have copied from it:
Only a few more days (at least until Friday, October 21st, if longer I will let you know) to order...PLEASE help us raise money for the Hubbel family. All the sales from this Thirty-One party will benefit the Hubbel family. We are donating 100% of the commission to help with the medical expenses for their 4-year-old daughter Emily Hubbel, www.emilyhubbel.com, who is fighting neuroblastoma cancer. Please be sure to place your order directly through the following link in order for it to go towards this family: by clicking here through this link for thirtyone  If you have any questions or need help placing an order, please let Dawn know (Dawn at dawnbrinson@ymail.com). **It's a great time to start thinking about your holiday shopping** and you will also be helping out a great family!! Please share this with your friends and feel free to repost. THANK YOU VERY MUCH!!! 

Thursday, October 13, 2011


Its been a long few days while we waited for CHOP to review Emily's scana and results that were sent. While waiting for the information to be reviewed, I had seen on a 9-20 CT scan that was done while Emily was inpatient in the BMT unit, that said "Possible new bony lesion in inferior pubic ramus on the right!" and if you all remember they did this CT because they thought Emily had pneumonia. No one had ever talked to us about these results, it just so happened that I was looking through everything and read that note.  I emailed Dr. Gowda to see what his response was and also emailed Dr. Bagatelle just to let her know that we were concerned.  Dr. Gowda called me a few hours later and said he had to call the radiologist concologist and was advised that this spot has been there since the beginning and it was never noted in any of the CT scans before, however they were going to add an addendum to indicate that information, and that he also indicated this was a non specific site and that he was sorry it was not indicated prior. 

The wait from Dr. Bagatelle was difficult, because all we could do was continue to think the worse of what we had been advised.  Having your child's doctor, the one who told you almost 1 year ago that your daughter had cancer, that she is progressing even after 8 rounds of chemo, but that they could not indicate how much, but there was progression, was devastating. 

Tuesday night we finally received the call from Dr. Bagatell. Both Doug and I was pretty nervous about the phone call, our nerves and anxiety was pretty high.  She gave us bad news but good news.  Bad news first... She said, "yes Emily still has the spots and typically we would like to have her clear of spots by time she starts radiation, but not all children are typical." Good news next..."From previous scans to most current scans, our senior radiologist oncologist does not see progression.  We also no longer look at the brightness or dimness of the scans, we look at the number of spots and any obvious growth." So, really the bad news, was what we already knew that Emily still had the spots and they were unchanged from beginning, however they do not see any progression or changes.  She also reviewed the CT scans with a senior and said the oncologist said: "She did not think it is something to worry about.  She noted that that area was not always completely imaged on all the other CTs, so the lucency that was commented on could have been there before.  She also reads MIBG scans, fortunately, so had the expertise to look for that particular spot on MIBG.  It did not light up, so her recommendation was to follow it over time."

With all of that said, Doug and I finally feel a bit at ease.  We feel at ease that we just follow this spot that was seen and that she was confdent with her responses. Dr. Bagatell recommends us to move forward with radiation.  After radiation if the spots are still there, we will still move forward with antibodies. Antidbodies should clear them up and like said she if they do not, there are other things that they can do, as part of other clinical trials that CHOP offers.  She is going to have the radiation oncologist contact Dr. Song at VCU to go over the sim and Emily's radiation that is scheduled next week, and if they feel it would be better to have radiation there, we will go there, but if they are comfortable here Emily will start radiation on Monday. 

Last, after all of the discomfort and not 100% information from VCU, we feel that it will be better for Emily to have her antibodies done at CHOP.   Antibodies can be deadly if given too much and not effective if not given enough and there are a lot of side effects from the antibodies and it is very important that anyone that is going to be in Emily's care knows what to do should a situation arise.  We as parents don't feel comfortable enough to feel that VCU could handle if something were to happen.  Dr. Bagatell is working on a schedule for Emily to start antibodies after radiation.  She said that they like to have the scans done by them and after scans start the first round of antibodies.   Doug and I also feel at ease with moving forward with CHOP should there be that chance that Emily is not clear after antibodies because they will be familiar with her and her spots. 

Radiation should be finished on or around November 1st and then after that we will be heading to Philly! Sue, be ready for us, because we can't wait to meet you!  You are such an amazing woman!! Dr. Bagatell is working on a schedule,. so we will have a better schedule coming soon and know what we are doing moving forward.  

We have 100% confidence in CHOP and their care of Emily.  What Doug and I just went through with these scans because of VCU is not something that we ever want to go through again.  We have confidence in CHOP in knowing what they are reading and what they are providing to their patients (parents) and that it is accurate information. 

Thank you everyone for all of your thoughts, prayers, love and care, gas cards, and help while we went through this devastating period of time. If I could sit and tell you all that Doug and I felt and went through during this waiting period, I would, but I can't.  I don't want to ever have to go through that again and I know damn well Doug doesn't want to either. Neuroblastoma is a nasty disease and we have to kick it now, and I know that with Doug and I together, Emily can kick this and live a happy and healthy life.  Please continue to leave your thoughts, prayers and love and care, gift cards and gas cards as Emily charges on into the next part of her treatment.   Thank you, thank you and THANK YOU!

I am really happy to be posting a better post than the previous post, our hearts, anxiety and thoughts are resting and finally at ease.

Wednesday, October 5, 2011

MIBG Results

First, I must say I am sorry if we have been unresponsive, by not responding to emails or text messages, however the past few weeks Doug and I have been through a lot emotionally, physically exhausted.  As parents with a daughter who has the big "C" word, our life has been turned upside down.  I remember in the beginning someone told us it would get easier, and honestly Doug and I have not found it to get easier, we have found it to get harder.  Its not easy, and it surely isn't easy hearing about how many kids that are not making it from this horrible big "C". Its devastating, it really is.     
So previously I left off where we were waiting to hear from Mass General and MD Anderson...I must thank all of the amazing people who have thought of us during this time and sent us gift cards to help with traveling! 

Getting an MIBG or just scans in general is scary, very nerve-racking to say the least and while waiting for that phone call or meeting to hear the results is as much as worry some as everything else!  I'm always afraid that I will miss that phone call and then just when you think ok so we are not going to hear on this not, the phone rings. While it was not time for Emily to really have a scan due to the actual study that Emily is on, the doctor wanted to get another MIBG just to see if Emily’s lesions , the 2 iliac wings and femurs that she had, had made any change.  

As you know Friday afternoon Emily had that MIBG.  The results were not what we expected and hoped for. At 6pm, we received a call from Dr. Gowda letting us know that the 4 spots in question, were still positive and the iliac and the femur on one side was much brighter than they were on the last scan back in June.  June’s scan showed one side to be brighter than the previous scan and within this scan, there was no change from June.  The results for us were actually very upsetting and turned our worlds upside down.  Doug and I felt that having Emily undergo 2 stem cell transplants (tandem) that this would clear up these spots and we would move on with no problems and she would be NED (No evidence of Disease).  However this is not the case, the case is she is showing more uptake.

I told the Dr. please prepare 3 sets of scans and paperwork for us to pick up Monday! Immediately Doug and I started to worry and worry about Emily’s total well being with much of the constant back and forth from Emily’s doctor and what they believe and what they don’t believe of her spots.  From the beginning it was of concern that maybe it wasn’t neuroblastoma because the spots was symmetric on both legs in the same spots and tried several other varieties of scans to see if they could figure this one out, and everything they did didn’t turn out with the answer they were looking for.  For us, it was an immediate second opinion back in early January and VCU Medical Center waited to hear what Sloan Kettering had to say and how they would stage it.   VCU Medical Center staged Emily Stage IV based off of Sloan, because once Sloan looked at it there was no question to them that these spots in her iliac wings and femurs were metastatic disease, so VCU Medical Center followed what Sloan went with.  Each scans that have come up, the spots continue to show positive in her iliac wings and femurs. After Round 2 of chemo, again we had scans and all the sudden the doctor indicated the spot on Emily's knee was gone and the spot on the back of her skull was still showing.  Both Doug and I were shocked, because we didn't know about those spots and immediately went for a 3rd opinion in March at CHOP - Childrens Hospital of Philadelphia. The MIBG done in June showed the left side to have some uptake and be a little bit brighter, but they felt it was just the way that Emily was laying and it was of no concern.  However come time to when Doug spoke to the doctor on Friday before the actual scan, he concluded that there was uptake on the last scan and we will see how things are after this scan.  

Once we heard Friday's results, the worry started, the fear came on, and anxiety was more than we could handle. We started looking at other trials and immediately was getting ourselves together for what we had to do to overcome this.   Friday evening our emotions were all over the place, tears, and just what the hell do we need to do to get rid of these persistent spots??? Saturday morning we received an email from Emily’s doctor that he wanted us to come in Monday afternoon and he would have the paperwork and discs ready and to check on Emily’s counts, which we also knew he would go over the scans.   So, yes when I wrote the post on Sunday, we knew some of what was going on, but we didn’t have anything as a final conclusion. As well as we were just not ready to talk about it. The fear of progression is just too much to handle!!

Monday afternoon, we met with Emily’s doctor and he concluded that he met with the radiation oncologist and that yes there was some uptake on one side that was worse than the previous scan, however he couldn't say how much uptake and the doctor said the radiation oncologist concluded that while it was brighter he couldn’t say if it was from the clothes she was wearing or from the iodine itself.  Of course this brought on even more anxiety, because it was again conflicting stories and then the thought of really her clothes? WOW really, and actually the radiology oncologist wrote up an Addendum and added this to the actually final results of the MIBG scan.  We asked her doctor several questions, but he knew where we were going with this.  He knew our minds were ready to move on, get someone who could help Emily.  He wrote a letter that indicated “To Whom It May Concern” and then wrote about Emily’s journey at VCU Medical Center and indicated if you have any questions to please contact him.


The results were beyond devastating to us both. 8 rounds of chemo (meaning 6 rounds of chemo and 2 stem cell transplants involving extremely high doses of chemo) and it appears that the disease in her iliac wings and femurs are very persistent and appears that she is not responding to the chemo. What makes this road even scarier is that we know if she has a relapse or progressive disease, there is no cure and we are not ready for that road.  When we hear that she has more uptake in the spots, that to us is progressive and we understand that you have to have a certain percentage for it to be considered that, but WHAT ELSE DO WE NEED TO DO that we are not already doing for her. If we have to travel that road for relapse/progressive disease, we will do whatever we have to do, but we are just not ready.  Our hearts our broken, our minds and physical well being is totally exhausted, and our minds are running a mile a minute and we can't keep up with our thoughts.  We are terrified, this disease is a nasty, horrible beast and all we want is for this to be gone and that we can say No Evidence of Disease and have a NED Party!  This road is very hard, we have no one to talk to about this and from anyone to get suggestions on what we would do.  Sure, I can text message some of my other NB mom’s and get what they would do, but it’s nothing like having a close person that you can call and say hey help me.  We are her parents and as her parents we have to make the right rational decision.  Doug and I have talked and talked about what is the best decision and where should we go from here.  What do we need to do?  But the anxiety that we are feeling is overwhelming.

Dr. Gowda says he just wants to move on to radiation, because it is the next part of her treatment and after radiation do her complete scan workup and see where she is then. And while that might be the right thing to do, we just don’t have 100% trust in Dr. Gowda nor the doctors at VCU Medical Center. Is there something else that we need to do for Emily prior to radiation or do we just move forward with radiation? What if they are missing something that we don’t know about, what if radiation is done and it doesn’t clear it up? What if? What if? VCU Medical Center only treats 3-5 patients a year with neuroblastoma. Last year Emily was the 3rd case and this year so far they have not had any new NB patients.  So within the last 10 years they may have treated about 30 NB patients and that is really boosting their numbers dramatically! We also learned that Emily would be the 5th patient at VCU Medical Center undergoing the CH 14.18 and IL.2 Antibodies at VCU Medical Center.  That scared us more than you can ever imagine because as a parent knowing that antibodies is very painful, causes high temps, blood pressures and other things, if the doctors and nurses don’t know how to handle a new hurdle, we could be endangering Emily's life.   Please know that we are not putting down their work, but there are a lot of things that we are not happy with and that could be done better.  Are there other hospitals out there whom have more NB kids that they treat a year and know how to treat them?

At first we thought we will send all of her scans and paperwork over to both CHOP and Sloan Kettering and see what both hospitals say we should do.  We started doing a lot of research and seeing that CHOP follows COG within all of their protocols, we would know that they are national protocols.  While Sloan is an amazing hospital, and if we had to use them, we would, but only for last resort purposes.

Doug and I have opted for a new road for Emily as long as CHOP agrees!   We sent an email to CHOP (DR Bagatell and Dr Mosse to see what our next steps would be and where to go from here. Being that Emily was scheduled for a simulation for radiation (please see update about radiation below) this morning and what steps we should take.  CHOP recommended that we move forward with the simulation.

After speaking to CHOP, the MIBG scan that was done after stem cell transplants is not part of the protocol and VCU just did this scan to see where Emily stands, so either way CHOP would be moving on to radiation without having seen the scans.  Dr. Bagatell feels at this time, go ahead and do the radiation and after they receive the package and they look at it, they can then make a sound decision should there be anything different than that.  If the radiation oncologist reviews the scans and feels that radiation needs to be done at CHOP, we will go there. If they feel we should just move forward with radiation here at home hospital we will do that. 
Now that we speak of Proton Radiation, it was denied by Mass General and MD Anderson, both hospitals felt that proton radiation would not be beneficial for Emily anymore than photon.  This caused a lot of distress on both Doug and I because there was a lot of information being withheld from us from our own doctors and then the other doctors in the clinic releasing information that we were advised was not true.   Our doctor recommended Proton for Emily, Hampton University thought it would have been good, however two of the top hospitals MD Anderson and Mass General felt it would not be beneficial.  We also spoke on the phone to CHOP during this and they also felt it would not be beneficial.  It’s one of those things that even as we are moving into radiation, we are stressed at knowing the parts of the body that the conventional radiation will hit and what kind of problems that she can have in the future.
Currently right now we will not be traveling for radiation unless after CHOP looks at the scans, they feel something differently, we will go from that.

Our path is still heading for a new road…traveling will be in our future!  CHOP does feel it would be beneficial that Emily have her scans and do antibodies at Philadelphia, just because of the inexperience at VCU and to see where she stands with her scans. So again as of currently today Emily will do radiation at her home hospital, but after radiation, we will be heading to CHOP for scans  to see what radiation has done for her.  While our hearts still wishes that we could do Proton for Emily, we have to move forward and do what is right for her, we can't hold off and have that fear that this will grow more.  If radiation is supposed to help rid those persistent spots, then radiation it is.  So again thank you for the gift cards that you sent, and the heart felt love and care sent our way. These cards will still come in handy for us to head to Philadelphia during the 6 months of Antibodies at CHOP.  Thank you, thank you!
I can tell you all that Doug and I are both terrified of all the What ifs? All the worries… and just in general Emily’s well being.

SIMULATION for Radiation

Today Emily had her sim for radiation.  This is where she would run through the CT scan and they would mark her body with these tattoos. The tattoos are small x's on her body that they use a needle to place it there, and she will have these tiny x's for the rest of her life. As I held Emily and they gave her the horrid propofol that puts her to sleep faster than you could ever imagine, her head falls over on my shoulder and she goes limp and the binky falls out. Doug and I hate the propofol and to have to put our daughter to sleep.  Its scary because of all the major side effects, with one of them being death.  While we have had to use this too many times to count and each day of radiation she will have to use it, you listen to her heartbeat on the machine and watch her vital signs.  Sitting outside while waiting for the doctors to complete the sim, all I could think about it, is I'm scared, Doug is scared. Will this work? When she was just about done, the resident came out and said Emily was marked with 8 "x's" on her body of where they will radiate.  I felt my face get red and the fear once again took over and the anxiety went into full bloom.  Doug asked lots of questions and Emily was crying, "I want to go home, I want to go home" so I had to walk away.  As of right now, radiation is scheduled to start October 17th.  I can't tell you how nervous we are about the spots the radiation will hit and what side effects she will have now and later. 

I also can't tell you all how nervous we are...wanting to know if radiation will clear our daughter of cancer? We don't want to hear those words again that your daughter has more uptake in her iliac wings and femurs, we want to hear the words, your daughter is in remission.
Now that September has come to a close and Childhood Cancer Awareness is no longer a big deal, and it is now on to Breast Cancer Awareness Month and pink everywhere.  I ask you not to forget about Childhood Cancer, our Emily, and all the other children out there just fighting for their lives and trying to live day to day. I ask you not to forget about gold and know that Childhood Cancer is important to share.  No parents wants their worst nightmare to become part of their daily life, we can attest to that. Its scary, we worry, the fear, the tears and all the what ifs.  We don't just worry about Emily, but we worry about Jessie and Brianna and think twice when they say this hurts and our minds run to the Big "C". 

If you are still with me, I thank you for still reading.  This was a long post, but it was much needed.  Its hard to share this over and over again verballyand instead of doing so, Doug and I have been rather quiet and keeping to ourselves.  So, this post is much needed so you all know where we are.  We are scared, scared!!  We are terrified. 
Remember to love and hug your children, kiss them goodnight.

Sunday, October 2, 2011

Home Sweet Home

There is no place better than being home, and Emily was able to go home on Wednesday of this past week, 21 days at the hospital, 2 weeks after she received her own stem cells.  She is happy to be home to say the least, as our we.  The doctors did send her home with TPN (thankfully no lipids (fats) this time) and quite a few medicines.   One of the medicines linezolid, which is an antibiotic that Emily needs to take, was really expensive to get orally, so they were able to get this medicine to take by IV.  So, she has to take this medicine by IV every 8 hours.  Critical Care came to the house to drop off all her supplies, TPN and antibiotic.

Emily is doing well, she had her clinic appointment Friday and so far she is maintaining her counts of where she needs to be and her White Blood Count didn't drop much after being off the GCSF, which is awesome after having not received the GCSF since Monday night. Her platelets dropped a little, but these are the ones that take the longest to start working.  But the best part of this is that Emily's stem cells are working. We did learn that Emily has adenovirus.  She was tested while in the hospital last week and it takes about 5-7 days to come back and it came back on Friday, positive.  Adenovirus is a group of viruses that infect the membranes (tissue linings) of the respiratory tract, the eyes, the intestines, and the urinary tract, and is normally the cause of the diarrhea. At this point we are not asked to do anything different for Emily, because the clinic tested her again on Friday and we should get those results next week.  If they come back positive again, at that point we will need to take a different action.  She is on the Linezolid which is one of the strongest antibiotics as well as the acyclovir which is another antibiotic.  There is a medicine that you can take when you have adenovirus, however the problem with taking this type of medicine is that is causes severe dropping of counts which at this point is not something that they want to do, because she was just given her stems cell 3 weeks on Wednesday.  From what the doctor says it appears that she picked this up from the chemo, low counts and several antibiotics.

Friday, Emily had her MIBG scan as well as clinic, which is a test used to find tumors of a specific origin, neuroblastoma.  Scans based on the study were not to take place until after radiation has been completed, however Emily's doctor wanted to see where things were before Emily started radiation.  

I know many of you are wondering where we are with traveling for radiation to either Mass General or MD Anderson, as well as everything else, at this point, we are at a standstill, waiting for information. We have an appointment tomorrow at 2pm to meet with Emily's doctor and we should know more information.  I know not what everyone wanted to hear at this point, but trust me, its not what we wanted to hear either, more waiting!! Neuroblastoma is such a nasty beast, that Doug and I want to make sure that whatever we do that we are making the best decision for Emily to beat this. It has already been a very long road and we know we still have a very long road ahead of us.

Today is a special day, today is Doug's birthday, Emily's daddy, my husband.  So, while we have a lot on our mind, we are celebrating a special day with a special man, father, husband.  We have family coming from Baltimore today and we are looking forward to spending time with them. Emily is looking forward to spending time with Nakeyah, since it has been a while since we have seen them.

I do apologize for the delay in updates since we have been home. However Brianna has turned in to a major night owl, not going to sleep until anytime between 1 - 3 AM which I like to update after they are in bed, but it has been hard to do so.  We are happy to be home with all the girls and everyone be together. 

Thank you for all the special packages of cards, gifts, love and support that you all send to Emily and/or our family.  They mean so much to Emily and she gets so excited to get mail.   Thank you to all who has been so special to us and to leave us special notes, sending us gift cards and being so special to all of us.  The love from all around the world, it absolutely amazing.  I have to be honest and say if it were not for all of you, our family, our friends, we wouldn't be where we are today without all the love and support.  So, thank you!!!

We will update more once we know more information.