Round 2 MIBG Therapy Complete

Emily in the garage at CHOP with her lifesize Minnie balloon from Sue George

Yesterday Emily completed Round 2 of MIBG Therapy, and that will be her last MIBG Therapy that she will be able to have. Sometime after the 26th (I believe, just have to confirm with our home hospital) Emily will have her stem cells given back to her with the hopes that her hemoglobin (red blood cells) and platelets (the most) will recover on their own. This will be the most important thing is to make sure that her platelets recover so that she will be eligible for other trials to rid of this horrible cancer.

The infusion for MIBG Therapy began Thursday after and her numbers were at 21. We did the ativan again as well as the bladder medicine and later Thursday we noticed that she was flipping out about bugs. At first there was tiny ants in her food and then there was flies all around and then there was bees and the bees were in her blankets. I kept trying to reassure her that there was not any bugs around her and she was ok, but she was screaming and not happy. So, we decided to lower the dosage of the ativan and instead of every 4 hours, changed it to every 5 hours. This really ended up helping a lot. Thursday evening, it was 11 PM and she was crying about everything, nothing was making her happy, she just needed something to take the edge off, she was so tired but would not sleep and crying about everything. So, they gave her a low dose of benadryl and within 10 minutes she was peacefully sleeping. Friday morning they were at 9.8, her levels were much like they were last time. Friday was better and the 5 hours spaced out really helped. I had heard that Nuc Med was coming back in the later part of the afternoon and I had asked if they could have her numbers checked again in hopes that if she was at 7 that they would allow the foley to come out and stop the fluids and medicines except the SSKI. They were at 7, exactly 7. He followed up with the nurse who followed up with the doctor and he came in and said yes but we would still have to wait the 48 hours from infusion of MIBG Therapy to get the MIBG "super scan" completed. We were ok with that and anything that would make Emily happier and be able to sleep with Mommy again (although she shouldn't be, but we don't care...as long as she is happy). She was so happy that the foley was coming out that she helped take it out. I told Dr. Maris (he was the on floor oncologist) that he rocked for allowing us to do this (when typically if it had been 48 hours she could have been released) and he looked at me like I was crazy. But Dr. Maris is a good man, good doctor and does amazing things and even goes to the senate (http://www.chop.edu/service/oncology/childhood-cancer-awareness/). Saturday was discharge day and she would have her MIBG "super scan" at 130 PM, she was ready and couldn't wait to get it over and done with. I won't stress over the scan, but "it appeared" that we saw some other things that were not there before and even on the other "super scan" done back in November. Bob, the tech, took special attention to Emily's left leg, and when I asked why he was taking another picture of it, he said oh because we have to. He was talking through his computer and running in and out of the room, so now as parents who have been through MIBG scans before, we are not idiots. Again, we won't stress and we will wait to see what comes out of the scans when we get the results back from the doctors.

We came back to the campground last night and will be here till Monday when we leave Monday to head home to make sure that Emily is ok and if she needs anything we will be close to CHOP that we can head back. Emily is doing well, she is just tired off and on and quickly. We are enjoying time together and thankful for a warm camper, because it is cold here. Thank you again Timberlane Campground, you all have been amazing to us and we continue to thank you for your kindness and warmness toward us.

When we get home, Emily will have clinic on Tuesday morning and we will be off to reading. Thanks to Donna Ludwinski whose son Erik who passed away 2-9-10 from NB who relapsed after 13 years, is such a great advocate and has a lot of information. Doug thought I should get in touch with her and I am really happy that I have, she sent us a lot of information which Doug and I will start getting into. I also contacted Maya Thompson (Ronan's Mommy) who passed away 5-9-2011 and she will be sending me Shollers information to get in touch with her. There are a lot of amazing women who are trying to do amazing things for this stupid ass cancer, NB. And we will be in touch with Sloan as well to talk with Kushner. I don't know where things will take us, and I have no idea what the expect that will happen in the next 6 weeks, our hopes are that there is no progression and her platelets are at least above 50 so Emily will qualify for a different type of treatment.

We are not in denial that NB is a horrible cancer and we have to get it and go at it quickly, things can change so quickly and without you even knowing it. So the 6 weeks is where we sit and worry again about the waiting, the waiting is this going to work? February 20th we will be back at CHOP for MIBG Injection with MIBG Tuesday February 21st. We are 6 weeks out and the scanxiety has already started. I am thinking we will be bringing the camper back again not knowing how long we will be here or what will action happen when we are here, but I guess we will cross that road when we get closer to the fact.

Thank you everyone for your prayers, you love and your kindness. Many of you have been very supportive and wondering what will help us while we are home. Thank you. We will be home by Tuesday, and there will be a cooler (requested by FGP - Laura, THANK YOU!) on our front porch if you want to drop food off, you will just have to put ice in the cooler. If you want to drop off something hot, normally between 5 and 6pm should be fine. Our family eats all organic and natural foods. We still are not up for much of talking yet, and honestly not sure that we will ever be, but we do appreciate everyones wonderful kindness. For me, I find it easier to hide behind the computer screen for now because emotions take over. Again gas gift cards for traveling are must appreciated, Whole Foods and Trader Joes gift gards are very much appreciated, and honestly just support means the most. Again thank you all for all of your wonderful love, thoughts, support you have left for us.

What I ask the most is that you keep spreading the awareness about childhood cancer and about Emily who is fighting NB. Share her with everyone, she is special (and not because she is our child and not because she is fighting for her life, but because she really is. Each child is special) and everyone deserves to know about her. And most of all make sure that each night you hug and kiss your children and tell them how much you love them.

6 Weeks Post MIBG Therapy

Emily making cupcakes with her cute apron from Sue

Tomorrow we have one week before Emily has scans to see if the MIBG Therapy was successful at CHOP. She is scheduled for MIBG Scan on Tuesday after the MIBG Injection on Monday with results from Dr. Mosse on Wednesday. Scanxiety is a severe understatement right now.

Emily had clinic today, and it was a long day at the clinic. However it was nice to be in the clinic and talk with the Joshua's while they were waiting for Meesha to have her bone marrow biopsy (http://www.caringbridge.org/visit/meeshajoshua) We had a feeling that she would probably need a blood transfusion come today since her hemoglobin had dropped so much prior, but we were hopeful that her platelets were coming back up on their own. However Saturday night, I looked over at Emily while she was sleeping and saw blood on her face. I freaked out and called Doug over. We saw some blood in her mouth, but wasn't sure where it was coming from, so we cleaned it out with a q-tip. Yesterday Doug saw a blood blister in her mouth on her tongue, but we thought maybe it was from her binky, we weren't really sure. During clinic we found that her hemoglobin had dropped considerably, so this will be her 3rd blood transfusion and we were shocked to find out that her platelets dropped from 31 to 6, so she was going to need platelets as well, 8th platelet transfusion since MIBG Therapy. Emily's ANC and WBC dropped a bit again, so we are still being very careful and making sure that Emily doesn't get sick or any germs.

Of course this brings a lot of concern for Doug and I worrying about her platelets recovering... I did bring this up with the doctor at CHOP by sending an email a couple of weeks ago. They emailed back with,
"The majority of patients treated with I-131-MIBG need frequent platelet transfusions following the therapy. Emily is now almost 4 weeks from her MIBG therapy and requiring platelet transfusions 1-2 times per week is not outside of the normal pattern. That being said, I hear and understand your concerns. Much will depend on Emily’s upcoming disease re-evaluations (as per the schedule below). We are always preparing for the “what ifs” so if indeed Emily’s MIBG scan in a few weeks shows that this therapy did not help we will have a plan for next recommended steps. If Emily’s scan is stable or better, it is likely that Dr. Mosse will recommend a second I-131-MIBG therapy and we would admit Emily to the hospital on 1/11/12 to receive that therapy on 1/12/12. We have many patients who go into a second MIBG therapy with low counts. We then re-infuse their stem cells about 10 days after completion of the therapy. If Emily is infused with her stem cells, yes that does limit some of her treatment options but is does not mean that she cannot receive any type of therapy for 6 weeks. Does all of this make sense? Please let me know if you have any additional questions or concerns."

So, at this point, we just wait to see how things go when she has clinic on Thursday and then how things are next week for scans. Right now we are working to locate a campground that is close by CHOP so that we are prepared should Emily be ready to do MIBG Therapy Round 2 and we have a place to go when she is done. This also helps with Brianna too, so we are hopeful to find a campground close by. If any of you know of campgrounds that are close by CHOP, open and relatively cheap, please email me. We also would prefer to be in our own area if we can because it leaves a lot less stress on all of us and also because of Emily's counts just to be on the safe side. Like I said if you know anything please let me know.

Otherwise Emily is doing great. She is eating well, playing and just enjoying no hospital overnight stays. We just continue to have clinic twice a week. We have noticed that Emily walks on her tiptoes and her walking has been affected by the radiation. Her hearing still seems to be fine and we really haven't noticed any other issues. She eats really well though, but not gaining any weight. She was 30 pounds when all of this started and today she is 27.8. For a 4 year old, Emily is very tiny and little, so we are always careful not to hurt her just when picking her up and things of that sort.

Send lots of love and prayers as we head into Philly next week for scans. Thank you so much for following our journey and keeping up with us as we charge on. Please give your kids hugs and kisses and tell them how much you love them.

Week 2 & 3 (Post MIBG Therapy) Update

Sorry I haven't updated in a while, but when things are "almost normal" you really almost forget.  So I have been updating  Facebook just to keep everyone one to date. See below for the last two updates

Dec 10th: Week 2 post MIBG therapy! Emily is feeling better and eating better! She needed platelets again on friday and her ANC is dropping! We are hopeful that it will come back up and she won't need the neulasta shot, but we will have to see! Last night we took girls to Christmas program where Emily was going to school! She enjoyed seeing her friends!

Dec 17th: Week 3 Post MIBG therapy, Emily has had a pretty good week, she is eating well also gained a pound (YAY) and seems to have energy. Her counts are steadily dropping, there is a trend of them steadily dropping. Platelets were low (21) Tuesday, but they wanted to hold off to see if they would come back up, Friday platelets were 7, so she received a transfusion. Emily's hemoglobin also dropped Friday, so she will get a transfusion on Monday. Being that we are only a week from Christmas, we are being careful not to get Emily around a lot of germs and land ourselves in the hospital. So far so good though!! Send Emily lots of love and she is loving all the Christmas cards, so thank you so much!! Have a great weekend.

Please also send out a lot of love, thoughts and prayers for some other families fighting NB right now that could use some love right now: Ethan Hallmark , Hayley Kudro andJoshua Johnson!!

Tomorrow night marks a start to our journey (its been a year) and December 23rd marks the day we learned that Emily had Neuroblastoma.

Week 1 (Post MIBG Therapy) Update

We have been home for a week tonight from Philly and it is nice to be home. The last time I updated, I indicated that Emily had a MIBG Scan before she left Philly, many just call this a "super scan" because it only takes 15 minutes and because she has so much iodine in her body that it won't take as long. The iodine in her body would quickly attach to the NB Cells in her body and would show on the scan and this is what they were looking for to make sure it was working. Monday we had received an email that indicated that they had received the results back and the "super scan" showed 2 others spots which had uptake in them. These two spots were in her left tibia and her upper abdomen. While they didn't make a big concern of this, because they expect to find uptake in other spots when they do the "super scan" what they want is when she returns in 6 weeks that the Therapy is working and the spots are either smaller or gone. While I hate to hear that she has others spots and they worry me, I am trying to realize that the MIBG Therapy is one of the most effective type of therapys that there is and we just have to know that this will work for Emily. The time home has consisted of Emily being extremely tired and really not eating much.

Tuesday she had clinic and we thought for sure that she would need blood, because she just seemed so tired and no energy. Even the nurse thought she would need blood but then she looked at her palms and said they were not white. When the CBC came back, it was great actually, her hemoglobin had gone up from 7.9 to 11.2, however her WBC and platelets were dropping. So, they sent us on our way wearing a mask just since her ANC and WBC was dropping.

Friday she had clinic again, and the past few nights before clinic Emily was asleep early and still very tired. Just extremely exhausted and would get winded very quickly. She also lost 2 pounds within a weeks timeframe, and Emily can't afford to lose any weight whens he is already underweight. CBC came back with hemoglobin still 11.4, platelets dropped to 20 and WBC same as Tuesday, ANC is going down just a bit. Emily had to receive her first round of platelets since the MIBG Therapy. They say this is normal, because many kids need platelets normally within 2 to 3 weeks, however with Emily she received MIBG Therapy very soon out of Stem Cell Transplant, so all of her counts were still on the rather low end when many other kids are much higher. Dr. Gowda said that the low energy levels and not eating much could be side effects from the actual radiation she received at VCU. We were kind of surprised it is just now hitting her in the past week or so, but the extreme exhaustion and not eating is what has us concerned. She does still seem to have the cough that she had when were in Philly when she received MIBG therapy, but doing ok.

Once Emily's ANC hits 750, they will either give Emily the Neulasta shot. By doing this, this is in hopes it will help get her counts back up. Should her counts not go back up, we may have to give her a bag of Stem Cells.

Friday night Emily was asleep by 630PM. Saturday we decided to celebrate our Thanksgiving and get up and make Turkey and all the fixings. Thank you to Whole Foods and the Goss' who gave us a gift card and we had a great Thanksgiving together as a family and even enjoyed having family over while Emily's counts are still ok. Emily enjoyed helping making the turkey and everything else. She loves to cook and keeps saying she wants a Kitchen Aid Mixer. It is amazing that she loves to watch the cooking channel. Thanks Dennis and Kim for spending the day with us. Today we had a pretty laid back day and Emily had a playdate come and hang out with her today, thanks Jessica and Aydan, we enjoyed having adult interaction and all the kids enjoyed having someone over to play. We are thankful that her counts were still not immunesupressed and she could have a friend over, even though she was tired. Doug and I were both pretty surprised that in the middle of playing, she stopped and came and fell asleep. When she got back up, she played for a little while, but not long after they left, did she fall asleep and is out for the night. Emily did continue to say she was hungry several times today and we made several different meals hoping that it would spark her to eat, but she didn't eat much. She did eat a bowl of mac and cheese that I made yesterday for Thanksgiving, so that was good that she did eat that. I'm hoping that her energy levels come back soon, because this is something that Doug and I are just not used to, because with all the treatment she has been through, we have never really had this issue before. So, it is really hard to see her so tired and even look so tired and not eating. We look at her and she is extremely thin.

We will continue our twice a week clinic checks to check Emily's counts and see if any transfusions are need or anything else. Friday we did ask Dr. Gowda why they didn't use SSKI at VCU and he explained that the iodine that they use, they didn't have to. After talking about how Emily was feeling and if we needed to do anything additional, he said he wanted to check Emily's thyroid levels again just to make sure they were ok. If we have to, we will start Emily on fluids and we have started her on Periactin which is supposed to help get her to eat. We also told Dr. Gowda about the two other spots that the "super scan" found and he was really surprised about the upper abdomen spot that was found.

Overall,. it is great to be home and enjoy family time. Doug has started decorating outside for Christmas, however we still haven't gotten the Christmas tree out.

Continue to send your thoughts and love and hope that Emily continues to do well and does not get neutrapenic and she land back in the hospital with fevers. So, we just continue to make sure that she doesn't get sick or anyone around her is sick. We continue to send out our thanks and love to so many who continue to pray for us, send their love and thoughts, gas cards and donations. Our hearts are just amazed at the generosity of those that many we do not know and those we do know. So, thank you so much! We are hopeful that her counts stay up this week and she continues to do well!

Give your kids lots of hug and kisses!

MIBG Therapy

Its crazy the ride that the Hubbel family has taken and now the roadpath that we once knew is no longer in the forefront and we are taking a different road. Our lives in the past 3 weeks have been wild from taking Emily to CHOP to get her treatment for antibodies to going for scans and then going to she doesn't qualify for antibodies at the current time and her disease is considered progressing and she now is under a different regiment of treatment.  Hopefully this treatment won't take us far off and we will be back to the antibodies and this will be over.  But for now, we just take one day at a time and deal with what is in front of us. 

Yesterday Emily had to be at the clinic to be triaged, lab work, and for us to talk with Dr. Mosse and the Nurse Practioner about the process of what is to  happen the next few days.  Some things that we should expect and what will happen. We were able to take some time and get Emily a late lunch before being admitted and have some time together as a family! I have to tell you all, we miss our kids and them being away from us.  Emily is such a great eater, so we enjoy having family time eating with her.  It is always amazing to hear that many kids don't eat well, we have never had those problems unless she was in for chemo.  But Emily is a great eater, and we are so thankful for that. 

At 9 AM today, she will be undergoing general anesthesia and will have a foley catheter placed.  It is a quick procedure, but she is not going to like it one bit.  The catheter is placed because the radiation that she will be getting later today by IV will be so toxic, that you don't want it to sit in the body, it needs to come out, so it will come out through the catheter.  They will have the foley catheter go into a lead box that is liked that will be emptied a few times during the day.  This afternoon when Emily receives the IV of the MIBG therapy, she will be in the bed and will not be able to get out unless to go poop, but they would rather her do that in a bed pan. She will be behind a lead wall which will be around all sides of her bed, there is plastic all over the floor, door handles, the phone, toilet, anything that can be touched by Emily.  Even the led wall ares in plastic. Once she is given the IV, only one of us will be allowed in the room at a time and we will be wearing a meter that will monitor our radiation levels that we have and anything that she touches, will then have to be thrown away.  When we need to touch Emily, we will have to wear gloves and cover up.  We will learn more today about what we need to be aware of and things that need to be done.  I do know that the nurses will not come in as often, and we will have to change the bedding, give Emily her food and do all the most things that the nurses usually do.  They will still do her vitals and take care of her pump, but everything else will be up to us. I think the next 3 days are going to be more of a boredom for not only Emily, but us as well and ready to get this part of the process done and over with. We are nervous about her not being able to touch us because Emily loves to cuddle and touch, so we are really worried about that, but they will be giving her verset (don't know how to spelling) which should hopefully calm her and she is able to handle it. That is the biggest thing that we are nervous about.

Once Emily's levels reach 7 she will be discharged.  We have been told 7 days from today is when we need to worry about her contact with mainly her younger sister and that she she sleep in her own bed.  When she is discharged she cannot go to the Ronald McDonald House, so we will head to our camper for a few days and then head home.  After this Emily will have 6 weeks of hometime, and work will be back in order and Emily will only have 2 days a week of clinic to check on her counts and see if any transfusions are needed.  CHOP will be in constant contact with VCU to advise of what needs to be done and CHOP will call the shots, which is exactly how I want it.

The process should be starting soon and I want to post this so many of you know what we are about to go through. The past few days have been exhausting in so many levels that I haven't been able to post.

With Thanksgiving being tomorrow, there are so many things that I am thankful for in no particular order and felt that I should share. I'm thankful for friends and family who have been there to assist us in things that we need, take care of our kids if need be and things that need to be done while we are gone from our home.  I am thankful for our landlord who has been amazing during this journey!  I'm thankful for CHOP and the amazing doctors and nurses who know what they are doing and are confident in their work.  I am thankful for people, friends and family who have made donations, gifts, fundraisers for our family!  I am thankful for my job who have been beyond amazing through this journey and even allow me someone to talk to when I need it. I am thankful for a husband whom I love so much is such a great man and a wonderful father.  I am just overall thankful to have 3 wonderful kids who mean the world to me and would do anything for them.  I am also thankful for other NB moms who have been through this process (not just the current, but the past and the future) who has been there to answer questions for us anytime of the day or night and many of the moms who even text or call.  It is nice to have others who understand to talk to or even ask questions to.

Send lots of love and thoughts Emily and our way that the process is easy and goes quickly and Emily can handle this easily! Please love and hug your kids.

Happy Thanksgiving

Fuck Neuroblastoma, Fuck Cancer

First let me say if this offends any of you, you will just have to ignore it, because this is what we feel and honestly using a cuss word is the best way to describe it and get out exactly what we feel. Oh by the way, and if you want to delete me as a friend from facebook or not read this, honestly you know what, FUCK IT. I’m done worrying about who I have offended, done worrying about what others feel, this is about us. This website is about our daughter and her journey through fucking cancer and what she deals with and we deal with on a daily basis. This website is about how we feel about what she is going through, so either take it and read along, or don’t.

Maya, Ronan's mom, from http://www.rockstarronan.com/ says it the best!

I’ve tried to take some time to swallow this and actually take it all in. As parents, I always thought we would be getting Emily ready for a dance recital and what she will wear or even playing soccer or something else, but I never thought as parents that Doug and I would be talking to each other about this word we learned about in December called fucking Neuroblastoma. So, yes in December we had heard of cancer, but never Neuroblastoma. Our whole lives changed when that word entered our lives, for good and for bad. In laymen terms, Neuroblastoma sucks. Its heartbreaking that my 10 year old, I can’t always be there for her when she is going through things such as the dentist or normal things of that nature, but her dad takes care of it, but as a mother its hard on me, that I can’t be in a million places at one time. Its heartbreaking that instead of potty training Brianna, Doug and I are daily just trying to keep up with life, the house, and Emily! Brianna knows no different than the hospital and this to her is just normal, that sucks that a 2 year old thinks the hospital is normal! WTH. And it is even more heartbreaking that Emily has had to endure 2 painful surgeries, 8 rounds of rough chemo, the side effects, a line that goes directly into the vein of her super vena cava near the atrium of her heart., weekly dressing changes, radiation, several times of being sedated, scans, bone marrow biopsies, transfusions and many other.
Today as parents, Doug and I are sitting on the edge of our seats, wondering what the followings days will bring. Yesterday we got the dreaded call from CHOP on the MIBG Scan, the one we didn’t want to hear about. The 4 spots in her legs are still there and there have not been any changes in those spots, and the spot in Emily’s skull that VCU pointed out is still there, but it is still as CHOP said, “Is it NB or is it not”? However, yes, however came up. The MIBG scan found something else, in her lumbar spine. The spot in her lumbar spine has never showed in any of the scans before and they are seeing it now. She said it is really small, but it is not impressive. Dr Bagatell did not even see it when just looking at the scans, however 2 of the top radiologist see it. What does this mean right? Well, at this point, antibodies that Emily was to be admitted on Monday for, has been put on hold. Tomorrow we were supposed to start giving Emily her GM-CSF shot at home (for the next 14 days), that too has been put on hold. They are scheduling a MRI for Monday to further investigate what the spot is. If the spot is NB, then Emily is considered “progressing” and she will not qualify for antibodies treatment and we will be discussing what to do next, what treatment should be next? If the spot is nothing (which is what we hope for), we move forward.

As parents, this has broken our hearts, fearing what tomorrow brings. Last night, Jessie had a parent/teacher conference, I was there physically and spoke up, but I don’t feel I was really there. I came home and made dinner for the girls, but I barely remember doing it. Last night Doug and I really didn’t talk, just took care of the kids (whom both fell asleep at 10 minutes to 8, very shocking!), talked to Jessie when she got home from dance for a little while and then all the kids were asleep. Doug and I feel out there, mindless with our thoughts all over the place, there was a lot of silence (I mean really what the fuck do you talk about when you hear this?), the silence was time for us to take things in and I guess you could say regroup, not that I feel we have regrouped, because I still haven’t regrouped from when she was diagnosed. I can’t tell you how hard this is as parents who want nothing but the best for their kids, and when the call came in at work yesterday, I broke down in tears when I hung up the phone, and then getting into the van last night with another breakdown. To watch my husband break down in the laundry room, and just be there to rub his back and we be there for each other. When I came in the house, I just held on to Emily for a little while with tears running down my face, she is such a cuddle bug. I later watched Doug do the same thing. But I don’t understand why any of this is happening and what we did to deserve this, but it fucking sucks.

We will leave Saturday afternoon to head back to the campground for Emily’s MRI on Monday, from there we have no idea what to expect. Right now we need lots of love, thoughts and support to get through this next part of this journey.

Home for a Few Days

We are home tonight after being in Philly for a few days! We are exhausted because the last four days have been nothing but running from early morning til night! Emily was even exhausted and fell asleep last night at 8pm and I don't know when the last time she ever did that!

We will be leaving again Saturday afternoon to head back to start antibodies! I still plan to give you all an overview of antibodies because so many have asked, but I'm exhausted tonight!

The information that we know as of right now is that the CT scan is clear, bone marrow is clear, HMA & VMA numbers are 14 and 29, just a little bit up for Emilys age, and I will need to look up to see what they were before and labs are good, EKG and echo were good! We did have her thyroid checked because Emily was never given sski drops to take before an MIBG and we were worried about that! Her numbers are a bit high not too high that she is concerned but concerned enough that she wants to watch them! We dont have a full report on the Mibg because she wants to go over them with the radiologist tomorrow so we should get a full report on them tomorrow! They need to review outside Mibg scans to inside MIBG scans!

That's all we know for now! I wanted to keep you all updates, and I'm exhausted! I also have received a few emails wanting to know what people could do to help with our traveling back and forth for the next 6 months and honestly the best thing would be donations, gas gift cards, grocery gift cards and restaurant gift cards! We get a few of these emails a day and I don't always have time to let everyone know and this would be the best thing that would help us!

With many asking how & where to donate, here is the information:

1. All donors may mail funds to the account at: Dominion Credit Union PO Box 26646 Richmond, VA 23261 Write "Emily Hubbel" in the check memo. Dominion Employees may go through the bank.

2. Clicking the donate now on http://www.emilyhubbel.com

3. Checks can be mailed to our PO Box with Emily's Name on the check 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!

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!!! 

Finally...

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.

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.


A NEW ROAD?


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.