Round 3 Started

Updating...copying from Facebook to update those who don't have facebook....

March 18th...Emily's platelets needed to be at least 30 to start. Got a bit nervous because she had a little nosebleed. They were 29, Dr Gowda approved her to start, but that Emily will have to start coming twice a week to check counts. Premeds are done and Avastin just started about 10 minutes ago and this takes hour and half then fluids behind, so almost 2 hours...another long day!

March 21st...Emily had clinic today and today started Day 1 of chemo of irenotecan and temodar. 

March 22nd...Clinic went well yesterday! Daddy and Emily were not there that long since she didn't need a platelet transfusion. However her platelets are still low, so we are constantly telling her to be careful bc of her platelets! Yesterday started the 1st day of chemo on day 4 for this round. Emily is a just a bit more clingy and emotional we noticed quite a bit last night! Chemo will go through Monday! Just a quick update!

March 24th...Today was day 4 of chemo and it started off pretty rough... Emily just wasn't feeling herself and not feeling well. She said her tummy was upset. After she laid down mid day for a little while she felt better. Tomorrow is last day of chemo and she will go back Wednesday to check her counts!

TEAM EMILY gear on sale!! Tees and hoodies. Adult and kid sizes.
Tees 15$ + 6 if you need it shipped
Hoodies 22$ + 6 if you need it shipped
(Xxl +2$)
PayPal fulltothetop4@verizon.net
Put order info in memo box- include address!
Local orders will be delivered to Wholesale Guitars aka Steve Bryant as well as delivered by Amy Gordy
ALL proceeds go to help Emily with medical needs and travel needs!!!!
Order window closes 3/30

Didn't make Counts, Chemo on Hold...

Snowy drive in (yes I was stopped)

Wednesday Emily had clinic to check her counts and the expectation was to start Round 3 of the IV Avastin and home oral chemo of irenotecan and temador.

630AM, my phone rang to the County Schools saying school was closed because the snowy weather was moving in faster than what expected (when the night before we were not supposed to get anything). I looked outside and it was pouring down raining. Left around 9 once Daddy got home from work and it looked like it had been snowing for a while. It was a long trek into the clinic, but we made it safely.

It was busy in the clinic, so Emily was accessed and we waited back in the waiting room until a room became available. Emily's nurse came out after a while and said Emily doesn't make countys, her platelets are 21 and need to be 35 to start the next round. I certainly wasn't expecting to hear that.

The waiting game, for platelets to recover, makes me nervous. Nervous to wait, nervous that we are letting NB come back in, when this seems to be working.

After talking with the nurse practioner, Dr. Gowda feels confident with this regimen that Emily is on, and that he doesn't want her to move forward without the Avastin. That is great to hear from him... The avastin goes in and attacks the tumor cells that are in Emily's body and then the chemo that comes after attacks the remaining ones. Emily still has such a long way to go, and many tumors in her bones that we want the Avastin and chemo to take care of.

Plan is to wait until Monday, and bring Emily back in and have her counts checked. We are having her eat plenty of greens, and trying anything we can to get her counts back up to where they are supposed to be so that we can start the next round.

While we are nervous about the wait, at the same token it is nice that Emily has a little bit of a break and this weekend we are taking the girls camping and going to meet with Navid who started Projekt 3000. We look forward to meeting with him. Emily is even more excited because her best friend, Lilly from school is coming with her sister who is also friends with Jessie. So, they are all excited and we are excited about seeing them happy. Emily really deserves this and we are thankful to their parents, good friends, who are letting them come along with us.

Please send your love, hugs and thoughts to Danny Nardi's family whom Danny lost his fight to neuroblastoma and AML. Danny and family, we are thinking of your during this unimaginable time. While we never met, I know we have seen Danny's name on the door in Michigan while we have been there! Thinking of you! http://www.caringbridge.org/visit/dannynardi

Please make sure you hug and kiss your kids and tell them how much you love them. The most wonderful thing is hearing your kids telling you that they love you out of no where. Have a good weekend!

I Don't Have a Post Title Tonight...

Our Beautiful Christmas Baby Girl

Sorry...

Right before the 3rd round of Antibodies, we learned that Doug's best friend was diagnosed with lung cancer. The day before Emily went inpatient, we made Thanksgiving Dinner and I made an extra meal for Doug's best friend and wife whom had already been in the hospital for a week for Doug to take over. Doug has been visiting with him and checking in on him and helping him with questions.  Tom is an amazing man, a father, an amazing husband and doesn't deserve this, he takes great care of hisself and always works out and eats well, so please send some love for him. We are walking the journey with him and his wife as well. (This was random but I was thinking about him and really wanted to share)

So today...today...today was a long day, longer than what we expected it to be. Counts were checked this morning and Emily's platelets dropped again, this time to 19.  So, they dropped from 29 to 19 in two days. Certainly not what we wanted to hear and we were asking nurse Julie why she thought they were dropping.  We really don't have an answer, but she had to get a transfusion. Once the platelets were just about done Dr Sholler and the Nurse Practioner Shannon came in.

I can't remember what we were saying but I think it had something to do with the platelets and Dr. Sholler was standing there, and said "Well there is progression."  WHAT? WTF you have to be kidding me?  Im sorry you said what?  She indicated she has some more spots in her spine and some on her head.  Im sorry I can't be technical here and tell you were because this honestly wasn't the news we were expecting to hear.  We didn't want to look at the scans, and didn't even look at the report, because once again like 2 years ago everything seemed blurry again.  Tears began to flow and everything around us just seemed to stop.

Emily has true progression these are spots that she has never had before.  I know that Dr. Sholler said they are only in the bone, so no soft tissue just cortical bone. She has been taken off the CH14.18 trial so no more inpatient at this time and all medicines such as GM-CSF and accutane have been stopped. Its not working because the disease is spreading. IT'S NOT WORKING DAMN IT.  We really thought the damn antibodies would clear us, what happened.  How?  Why? 

Because of the concern of the platelets dropping, they are worried about her bone marrow, so tomorrow at 8AM we we will meet with the nurse to have another CBC done and then have a bone marrow biopsy done. The biopsy was not planned, so this had to be placed in last minute. We should have a preliminary by end of the day of the results on her bone marrow.  We will talk with Dr. Sholler about DFMO, she thinks we should put her on this and let Emily's enjoy the holidays and we can discuss from there what our next steps will be. We think this is a good idea, Emily deserves to be home for the holidays with her sisters and have a wonderful day. We do already have Dr. Gowda searching for what other trials may be available to us and Dr. Sholler is looking and we as well will be looking. The Bone Marrow results will give us more of an idea of the way we need to go as well.  If we have bone marrow disease,we are playing with something more messy.. But we are both are even more scared because Emily has not had any bone marrow disease since she was diagnosed 2 years ago.

2 years to the damn day Emily had scans and there is growth.  What the hell? We are both at a lost here, both feeling sort of not together, just not understanding how this happened. Doug and I both went in seriously believing some of the spots had gone away and that we were well on our well of acheiving that clear that we have been wanting. Emily deserves to be clear, she really does.  Emily DESERVES THIS.  Our Christmas wish didn't come true and our hearts are broken and we are both scared. Emily is not in any pain right now, nor has she complained of any at this time and we hope it continues to stay that way and that this disease will go away.

Im sorry I write this, but I am.  Randomly today tears have fallen for both Doug and I. Neither of us can fathom the thoughts that something ever happen to Emily and have our 3 girls, 3 girls together.  We can't fathom the thought of Emily not being here to celebrate her birthdays and Christmas and Holidays. We can't fathom the thought of being in our vehicles and looking in our rear view mirror and she not be there, so we continue to fight.And we honestly don't how we could handle it... Seriously this disease is a monster, a monster that invades our children and there is no understanding it.

We haven't yet explained this to Emily, we really have to find the right way to explain it. Emily is so ready to be done with treatment, so we really need to find the words to talk to her and really have her understand. I know that many of you have been waiting for an update, but we really are still trying to swallow all of this. If we don't respond to text messages, emails or phone calls, please know right now we are still learning to deal with this in our way.  We are still trying to figure out everything and moving forward.

Today we went and picked up purple and yellow chalk for Teddy's mom, for Teddy, for Emily and all the other children fighting neuroblastoma. If the roads are not wet and covered with snow, we will be stopping every so often to write on the road..  We will draw a big yellow ribbon for pediatric cancer and in purple we will write cancer kills children too.

2 beautiful girls fight Neuroblastoma and they are both amazing.

Today we also went to visit Brooke who is inpatient neutrapenic and bring her some Christmas cheer. It was nice. Nice to finally meet Brooke's dad and see Brooke's Mommy. The love that both Brooke's dad has for Brooke and the love that Doug has for Emily can be seen everywhere.  Daddy's girls...



Daddy's girls. 

Please continue to think of Emily and that her bone marrow is clear and that mom and dad conitnue to have the strength to get Emily through this and that we make the decisions that we need to make.

Round 1, Day 1 of Antibodies Update

Update on Facebook (Emily's Journey) around 5PM est:

It's been a really long day...port accessed...check (did awesome), peripheral line in her arm...check (cried, they got it on first time, did awesome), GM-CSF shot...check (did awesome)! Been pretty emotional day, but we are so proud of her! Now the day has really just started with the CH14.18 just starting! Please hope for no pain and she handles this well! This will run til 245am!




Thank you to Elaine, Emily's nurse from the clinic.  As we were coming into the hospital, Emily asked if she could go to the clinic to be accessed, and I told her we had to go to the 7th floor, and she was upset, because she wanted Elaine to access her.  I get a call a few minutes later while checking in, that she was going to come up and access Emily.  Thank you Elaine, this really made it much easier on Emily.

We are so thankful that they were able to get the line in her arm with no problem, because if there were any problems, we would have had to make other decisions on what to do.  We feel this is the best decision to make Emily the happiness when she is not in treatment.  I was pretty nervous about how it was going to go remembering how she did when she was diagnosed, but Dad was pretty confident she would do fine.  Emily did great, and we are so proud of her.

Update on Facebook (Emily's Journey) around 1045PM est:

Its has been a long evening and the CH14.18 runs until 245AM and the morphine will run until 445AM. She had a nasty bout of pain, heart rate increasing and they had to get approval for a bolus of morphine. Upped the morphine and gave bolus and she settled down a bit. Pretty emotional for dad and I watching her in so much pain, crying out and moving around so much because it hurt so much and there was nothing that we could really do, just trying to help calm her. About half hour ago, she said it was hurting a little bit, but it was time for her benadryl so right now she is settled and sleeping, hopefully the rest of the evening will be ok for her and she will handle it. Please continue to send your thoughts and love for her to handle the rest of the transfusion tonight.

I will update later to let you guys know how the rest of the evening goes.  There have been doctors, nurses and others in and out today, lots of filling out of paperwork and taking care of things..  Thank you to Sue for spending the day here with me, I can't tell you much it mean to Doug and I for you to be here with me and just be there to help out, it really meant so much.  The nurse practioner came in and talked about the accutane that Emily will need to take, and said that Emily will have to undergo a pregnancy test for each time we need to get the accutane.  I said, "Are you kidding me?" She said she was shocked too, but it was required.

Daddy and I are so proud of Emily.

Inpatient Less than 32 Hours – Day 9 - 14, Round 2

This past Monday evening was a long evening, another night of fever watching all night. Thankfully she had her line already accessed so this fear of going to the hospital would not be because of the line needed to be accessed. We ended up making it through the night with at one point it was surely high enough to go in, but it ended up going back down. Tuesday morning, it was 100.5, so we brought her in not wanting to mess with this in case the cold was causing this or even worse something else or even becoming septic.

No fever in the clinic, however she had low blood pressure with a high heartrate anywhere from 130s to 160s, Emily’s normal heart rates is 100 – 110. So, they went ahead and gave her mirapenum (spelling) for antibiotic and a bolus of fluids. The bolus was in hopes of getting her blood pressure normal and heartrate normal, however it did not. So Emily was sent for an xray to look at her chest because of the coughing and then off to be admitted.

Being brought to the 7^th Floor as inpatient flooded us with memories of when Emily was first diagnosed and then all the times after that she was admitted. It was almost as if things didn’t change, except for a few new nurses, a few new doctors and patients of course and then some of the patients were ones we had seen before. It was so hard to see her there, and like she did before she cried wanting to go home, because she didn’t want to be there. I really wanted to cry with her and thought this was no place for her. The childlife left a few gifts on the bed for Emily of the Little People Camper with a car and some hair stuff and socks. How awesome is that, and she just guessed on the camper stuff. Emily loves camping, so she loved the toys. Thank you ChildLife!! After getting into the room, Emily was ready for me to pull her in the wagon around the halls with her mask on. We strolled the 7^thFloor halls for 3 hours and after those 3 hours, my legs were on fire. Not many places to walk, so we continued to see the same people over and over again and some of the nurses even tried to get Emily to talk, but she wouldn’t.

Dr Massey came in and said that her xray was clear, which was an awesome thing, don’t want to bring an added worry! All night she continued to have no fever, she continued with her megace and nifurtimox and she was trying to eat a little bit. The nifurtimox did bring a bit of a problem in a hospital that does not allow FDA approved things. The nurse said that the pharmacy was coming up to take the nifurtimox to put their label on it. I was not thinking in the "FDA approved" thought, I was thinking about Emily's low counts and having this go out of my sight and who knows whose hands it would be in and Emily get sick after that taking them. So I wouldn't allow it to leave my sight. (Come to find out later, it was a good thing we didn't give it over because our nurse in the clinic said we may not had gotten it back since VCU doesn't allow non FDA drugs.) Daddy brought Brianna and Jessie up for dinner and I took the girls downstairs to eat while Daddy spent some time with Emily! When she was ready for bed, we laid down and the coughing got worse and worse. I finally went and talked to the nurse, telling her how dry it was in the room, was there anything we could do. She made a makeshift humidifier to put some wetness in the air, and within the hour Emily was able to fall asleep and stopped coughing as much.

Labs were drawn early and the doctor walked in early, telling me that Emily’s hemoglobin was 6.4 and that she would need blood. This was the lowest it had ever been before, since we have started treatment, so of course we were on board to get some blood. This probably was also the cause of the low blood pressure and high heart rate. Thankfully the blood didn't cause any problems and also she didn't have any fevers throughout the day. The doctor came i at 2pm and asked if we would want to go come if the cultures that would be released around 4ish came back negative. UM HECK YEAH, we would love to go home.

415 PM came around and she was ready to go home, so we packed up and were out of there around 445PM. Emily was happy to be leaving, she wasn't up to her 100% self, but she was getting out of there. She had to be back Friday for clinic to check her counts and see where here platelets were since they were pretty low before leaving.

Next day Emily was back to herself just still full of coughing, but happy and talkative. Friday's clinic brought still neutrapenic and platelets needed. Emily will go back Tuesday for counts, her nurse feels she will probably need blood, hopefully not because this means a long day in the clinic, but at least she will be prepared for flight. She will be accessed and not have to do that when we get there, and be ready for injection of the MIBG isotope.

Wings of Mercy, such a wonderful organization will be picking us up Wednesday morning about 730AM as we are off to Michigan with a rental car waiting and we will be staying in the Renucci House and then bringing us back Friday morning being back around 1ish. We were able to work it out that Brianna could come with us on the flight, which before she was not able to. Jessie will be at her dad's so she doesn't miss school and dance for 3 days. I will try to keep you guys up to date on whats going on and how things are.

Next week brings about scans and lots of anxiety, therefore scanxiety. While her HMA/VMA levels are low, it still brings the fears that we don't want or even that this isn't working. These scans are bringing more anxiety than we have had in the past, just because we want to know where we are going moving forward, whats next. Our hope is that Dr. Sholler says she is seeing an amazing decrease in the spots and would like for Emily to continue on the trial. (this trial is for at least 6 rounds). While we don't want to continue with more chemo, if this is working, we are happy to get the cancer out of her and continue on along with the nifurtimox.

This past week we lost a special fighter, Krysten. Krysten is a beautiful 18 year old bright blue eyes fighting neuroblastoma, she is no longer fighting and is now cancer free. Please leave her family love and thoughts on her obit, Krysten you will always be in our thoughts, we will miss seeing you in the clinic.

Continue to keep your love and thoughts for Emily as we continue to fight neuroblastoma with Emily and bringing her cancer free! Make sure you hug and love your kids and tell them everyday how much you love them!

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.

Day +2-6 Updates of Stem Cell #2 Transplant

I promised myself to update you all tonight and I am going to do that. First is first, I want to say thank you to all those who have sent packages, cards and love to Emily. Although the past few days Emily hasn't been up to it, she still loves everything that is sent to her, and I can't tell you how much it means to us. The joy it brings to her face that she got mail, it just amazing. She loves mail, so we really appreciate all that you all do for us.

Secondly, I have received a few emails asking how they can help since seeing that we are going to be traveling most like to Boston. While we don't like to really ask for help, the most helpful thing would be gas cards and/or restaurant cards. Radiation will be anywhere between 12-15 business days, we won't know until they complete the review which is scheduled for September 23rd, so we will be there for at least 2.5 weeks or so. Its looking as if it could be mid October when we go, again we have nothing set in date, but we know it could be 2nd or 3rd week of October. If anyone would like to help, like I said gas cards for the van, and/or restaurant gift cards would really help out. You can send them to:

Hubbel Family

PO Box 5383

Midlothian, Va 23112

Donations may also be sent to the same address, since I have had a few requests on where to send those as well. We appreciate all that you all do for us, so thank you again for your help as we move forward into the next part of Emily's Journey. I can't thank you all enough for the amazing outreach we have received from so many of you, because it honestly just continues to amaze us how people are. So, thank you!

The past few nights I have watched my husband walk down the empty hospital hallway with Brianna and turn the corner to leave and go home and each time, tears fall down my cheek. Emily has spent so much time in the hospital, which means much of that time means spent away from family, that means that we are all apart. Jessie stays more with her dad during these times and Brianna is home with Doug. Doug and I have noticed that this is starting to affect Brianna because she is starting to have a bit of a hard time and is really missing Emily and I. This is hard on Doug having not been here all day and to come in so that I can spend some time with Brianna and eat dinner, he sees Emily in pain. That look in a daddy's eye to see his daughter in pain, it will forever be etched in my head. This is hard and honestly if I had to calculate and add how many days Emily has spent in the hospital, many of you would be amazed. We are strong and know that this is for the best reason and that is to get Emily rid of this cancer. But you know what, Emily doesn't know she has cancer. She doesn't know. When she asks we just tell her what we need to so that she can get through it and you know what, she really doesn't asks. She just trusts us and knows that we would never make her do something that she doesn't have to do. And through all that, she smiles. Thats right, she smiles. She is an amazing girl and I want you all to know how amazing she is. She is strong, and when Doug and I look at her, we both think to ourselves "Look at this beautiful child that we made and look at how beautiful she is. She is caring, and special and oh so sweet. We made her!" Do you know there was a little boy here and Emily wanted to give him a gift, she gave it him and was so excited to give it him (she didn't care that he was getting something and she wasn't) and as she walked back to her own room, all she could say was, "I hope he likes his gift!" Yes, Emily is 4 and she worries and wonders what others feel, isn't that amazing. So yes Doug and I are just amazed that we have such a wonderful child and I will tell you that when she gets older and Doug and I tell her what she went through when she was younger, she is going to be teaching other kids, she is going to come to the clinic and talk to the other kids going through this and have a smile on her face and help them through. I promise you, Emily is going to make a name for herself if she hasn't already.

Days +2-6, these days have been pretty hard on Emily. The temperatures started and since Day +2 Emily has been getting cultures every 24 hours to see if she has any infections. More antibitiocs have been added to the regimen of medicine she is receiving to take care of anything and loose and runny bowel movements have started again. On Day +5, Emily's stomach has been bothering her a lot and the doctor wanted an xray of her tummy to see if there was anything going on. She has what they call partial blockage, postop ileas. What this means is that she has pockets of air which is causing a lot of the pain and in order to get rid of that she really needs to move around to get her body working normally again so she can pass the air. So far none of the Cdiffs have come back positive, none of the blood cultures have come back positive, so we are hopeful that it will stay that way and will not change. Saturday night the doctor started her on a 12 hour TPN that runs over night. We are hoping that this 12 hour TPN will be suffice so that she can go home with no TPN. The past two nights Emily has woken up and had to get sick. The pain she feels in her stomach, she cries out in pain where we have had to use the Morphine to control the pain. Several of her electrolytes have been low so she has been getting repletions for those and repletions of blood and platelet transfusions. Tonight her WBC is still less than .1, however there was an error in the pull and the first was showed .1 so we are hoping that this means she is on the spiral of working her way back up. But only time will tell. We are ready to see the fevers and the pain to go away and to have our little girl back and playing and running down the hall like she was doing just days ago. Hopefully the last week Emily will be feeling well enough to get an MIBG scan so that we can see if the stem cell transplants have helped the spots (specks) in her femurs and iliacs bones. We want them gone, and gone for good. Did the chemo do what it was supposed to do. So, of course we are anxious for these to see where she stands.

Please continue to send positive thoughts that these fevers will go away and Emily will be on the up and up and feeling like the Emily we know. I miss her, it has been a lot of rubbing her back and tummy, calming her, bathing her and changing the linens. I miss her talking because when she feels like this she doesn't talk much.

Did you all know that September is Childhood Cancer Awareness Month? Many parents are trying to reach out to Ellen Degeneres to see if she can help spread the awareness by doing a show. I hate to say it again, but being aware is so important. Let me tell you guys something...I am part of a Mommy board and about a year and a half ago or so, there was a mommy whose daughter was fighting cancer and her story was shared and she wrote like this. I read her updates all the time and cried a long with her and all I could think was, "I couldn't imagine.!" I remember telling Doug about it and he had a hard time hearing about it, because it tore him up much like it did me. And all along we thought, this could never happen to us, well it did people, it did. I am not here to scare anyone, I am not here to make you want to be aware, I just want people to understand that it can happen to anyone. Anyone meaning, your siblings, the poor, the rich, celebrities, your friends child, anyone...because you know why, cancer doesn't discriminate and pick people, it happens people, it really does and you know what it could be you. It really could. If people were more aware and knew more of what to look for, it makes you wonder would things be different than what they are today. If people were more aware, wouldn't there be more funding for childhood cancer. If people were more aware, don't you think there would be more testing on newborns since many are born with cancer and many times it is found too late. I am amazed at all that is done for Breast Cancer and while I agree that it needs to be done lots of research and all of that, but did you know that Childhood Cancer only gets 3% o the funding, thats it guys. And the percentages are lower when it comes to the actual type of cancer that it is. We need more people to understand about childhood cancer, because it is real, it can happen and your life will forever be changed. So let me break it down like this, I know you all have seen the St Jude commercials and watched and cried as you seen these kids going through hell and saying, "I can't imagine!" This is the same thing, this is what Emily goes through, this is what her sisters go through, this is what we go through. Its a family affair, and I don't wish this on anyone, but I just want everyone to be aware.

Some people think after stem cell, Emily will be done with treatment and we can move on with our lives. Some people think that after radiation treatment, Emily will be done with treatment and move on. After radiation Emily has 6 months of antibody treatment. 6 months of antibodies and accutane, another pure hell that Emily will have to endure and live with and more pure hell that mom and dad have to watch their daughter endure. Stem Cell Transplants is pure hell, but she still has more, she has more.. But it is important to understand that just because treatment may be done, this will never be done. Emily will beat this, we know she will but, just because she will beat this doesn't mean she will be done and this will be over and we can move on with our lives. After the treatment is done she will have to go every 3 months for scans to see if anything shows in the scans, have repeat urine tests, repeat bone marrow aspirates and we all worry each time waiting for the results to come back if Emily will relapse. And if she relapses we have a lifetime ahead of us to get her the best treatment, which means a whole new game. It will be the life of the unknown and a relapse for neuroblastoma people, there is no cure. But we are not thinking about that nor are we going there, it is just something that will be in the back of our minds as it has been already. And you know what, even after all that, it will never be over for Emily because for the rest of Emily's life she will have to deal with all of the side effects from the treatment, Dad and I will worry about secondary cancers. Did you know that the chemos that children receive is adult chemo, it is not called children chemo like other medicines that we give our children. So all that pure poison that is going into her body and any other childs we will have to deal with for the rest of her lives. So even though we are so ready for the treatment for Emily to be over with and many say won't it be over soon, it will never be over, it will never be over. Doctors will just be something that we have to get used to because they will always be a part of our life, always!! There will be so many things that will just be a constant reminder, there will be so many things that our family has endured and gone through. Any bumps and bruises we will worry it is a tumor growing, just the normal complaints of my tummy hurts or my leg hurts we will worry it is cancer. So, it will never be over. NEVER. I dont' want any of you to put yourselves in our shoes or any other parents shoes who are going through this, but I do just want you to imagine. Imagine, can you imagine it? I know we couldn't.


Well I am beyond exhausted, I couldn't sleep tonight as I watched the blood transfusion happening and the nurse constantly checking her vitals and now it is 5 AM and I must get a little bit of sleep before the day starts and nurses are in and out again.

Day +1 Stem Cell #2

Day +1  is over.  This treatment that Emily has to endure has been very long and we are only half way through it.  Seeing the pain that she has had to endure, is a pain that no child should never have to endure, ever. Emily was admitted last Wednesday, September 7th after having been away from the hospital for about 4 weeks from Stem Cell #1.  During that time off, we spent a lot of time together as a family enjoyed each other and even had a consultation for Proton Radiation.  Our doctors indicated that Hampton University does Proton Radiation ( they were new and did them for adults and would soon be adding children into the mix) so we went there for a consultation to get more information.  So we met with Dr. Allen Thornton and Doug and I left lost and confused because he said he saw something in one of the scans.   I won't go into that, but it wasn't nothing that we didn't know about it.  However we did learn that proton radiation was much better than conventional radiation...

How is proton radiation different from traditional photon radiation?

In traditional radiation therapy, X-ray beams are typically used to treat cancer. The X-ray beams go through the cancerous tissue (tumor) destroying both healthy and cancerous areas along the path of the beam. Proton beams enter the body and deposit most of their energy at the target – the site of the tumor. Radiation oncology physicians are able to focus the energy of the proton beam within a tumor, minimizing damage to nearby healthy tissues and vital organs.

Proton is definitly better because it doesn't hit other vital organs that could later cause different types of cancer. Proton's beam hits only the spot that it is directed at. and doesn't go through the other side of the body the way that conventional does.  For Doug and I this is very important because we want what is best for Emily because we want the least radiation and only where it needed at.  Specifically so in the 4 spots, the iliac and her femur.     After the consultation we spoke to our ONC and he made some calls to Boston and MD Anderson.  Proton Radiation is only available in 5 states, Hampton Univeristy which is in VA is not toddler ready and when they would be ready, we didn't want Emily to be the first toddler that they work on.  They need more experience and we felt that Boston and MD Anderson were definitly more experienced, however we felt comfortable with any of the 5 states and VCU was just trying to see where they could get us in.  So scans have been sent off to MD Anderson and Mass General and they will be reviewing them next week and we will go from there.  There is no doubt Proton is the way that we are going for Emily.

The day Emily received her stem cells, the Radiation Onc came from conventional radiation and spoke to us and we were able to ask questions. The woman ( I can't remember her name, but know she was a radiation onc) she felt that for Emily and where her spots where on her legs and how little her legs were, the proton wold be better for her.   So to get that nonest opinion from the conventional radiation onc it really helped.  

So far Emily is doing ok.  She has gotten sick a couple of times, however her tummy being upset and hurting has been what has been bothering her the most.  Two days her counts have been at .1 and so far we haven't seen any spots in her mouth, I am not sure if she has any mucositis in her espophagus, we are thinking with the upset stomach that she possibily does.   Today she did run a fever and they had to do cultures, so we will see if that was anything or just the nature of the beast of the low counts would be my guess.   Tonight she also had to get magnesium and phosophorus since they were both low. 

Emily is an amazing girl and she is so strong, I can't believe she takes all this and goes through this like she does, and still has a smile on her face. She may be in pain, but she still smiles.

I'm exhausted, so Im heading to bed.  Tomorrow is Day +2 and we are cointinuing to hope for an easy day.   Love and kiss your kids. I miss my girls Brianna and Jessie and missing my husband.  We are in the come and go mode now.  Hugs and kisses.  Night.

Day 0 - Day +3

Hard to believe I haven't updated since Monday when Emily received her own stem cells back, its been quite busy here both day and night.   I stay up late working and normally during that time, Emily is up with bathroom rounds or what have you!

Thanks Doug for doing all that you are doing with everything else.  It means so much that you bring the girls so I can have dinner with them and that you have been taking care of all the laundry for us with everything else.   I can't tell you how much we miss you, this switching off stuff and not getting to see each other much, is really hard and starting to really take a toll me, I miss you so much. It sucks that we don't get to talk a lot, mostly in passing or by text messages, but I want you to know just how much you mean to Emily and I for taking care of us and makings ure we have everything that we need, while you have other things to do.  It means so much to us.

DAY 0

Emily got a visit from Allison Rippy and her mom on Monday.  Emily loves Allison and she brought Emily a cute, fluffy little dog.  So cute, thanks Allison.  Emily however wasn't feeling that great when they came, so she wasn't very talkative, which I felt kind of bad, but I know that they understand.  Thank you Allison and Astrid for stopping by.

The nurse practioner came in to explain the process and how things were going to go and what was going to happen.  They were going to pre-medicate Emily with Tylenol and Benadryl because it was a possibility that she could break out from the preservative that was used to keep the stem cells.   He also indicated that while they are being transfused and for the next 24 hours, that we may smell something. Everyone says it smells like something different. He said since there was very little preservative in her stem cells she probably wouldn't break out. 

The process started about 140PM, Dad came and Pop was also here. MCV calls this your "birthday" since it is supposed to be special that you are getting your stem cells back.  The nurse that day told Emily it was her birthday and she was kind of confused and then looked at me and said, "Are we going home?"  I felt so bad, so I had to inform the nurse to be careful about what was said, and if she could let the doctors know this as well. Emily's stem cell's were just hung and gravity let them flow in throw her IV.  After the process Doug told Emily she had a stem cell transplant and Emily got upset and he told her it already happened.  After Emily started to break out all over, her legs, arms, behind her ears, back, everywhere. She wasn't really scratchy anywhere except for behind her ears. Since she had already gotten Benadryl, we just need to keep a watch to see if it got worse.  

Dr. Massey did let us know that Emily's Immuno Globulin G was low and that tomorrow she would need to get IVIG and that Emily would also need to start TPN (Total Parenteral Nutrition) after she received the IVIG since she hasn't eaten anything since Friday, but very little.

This was also the day that we really started to notice the difference somewhat.  Emily was having stomach pains, which we were not sure if it was from having loose BM's or if it was from the start of muchositis in her esophagus. They also took some of her stool to do a test of C Diff on it.

DAY +1

The stomach pains have started to set up.  Emily wakes up several times a night to go to the bathroom, whether it be loose BM's or just to go potty.   She also started to complain that it hurt to swallow anything. And when she did swallow anything, you could tell it was painful.

The C Diff that they sent Monday came back negative, but Emily was still having a lot of loose BMs and complaining of stomach pain, so they sent another one to have it tested.

She slept off and on, but and is still having bouts of throwing up.

Tuesday afternoon, the nurse got ready to start the IVIG and had to pre-medicate Emily with benadryl for the IVIG, because she could have side effects from the IVIG.  Recieving the IVIG Emily could experience rashes from it and also feel like she has the flu by being very tired. Doug came about dinner time, so I left for the first time alone to head and pick up Brianna from the sitters and then pick up Jessie from her dad's and have dinner with the girls.  I have to tell you it was really hard to leave Emily, because of all the guiltiness of leaving her, but I knew I needed to, to spend some time with the girls. Its really hard that now that Emily's counts are less than .1 that they can't come in the room.  It was nice to spend some time with the girls to have dinner and head to the Dollar Store for a little while.  I got a text from Doug that Emily was asking for me, so we headed back.   When I got back, she said, "Mommy I missed you so much.!"  Emily really just misses us all being together, we all do, its hard to be away from her sisters and dad and only seeing her sisters possibily in the hallway in passing by and daddy for a little while.  

Emily is asking for home a lot and wants to be home so badly.  When Doug leaves to go home at night, she gets upset because she just wants to be home. 

DAY +2

Wednesday Emily wakes me up out of no where (which that isn't unusual with the going to tbe bathroom) but to throw up. Once we got back to sleep, it seems like no time later the nurse comes in and let me know that Emily's C Diff came back positive.  Which this now puts Emily on contact precautions with a Highlighter Green colored piece of paper on the door indicating contact precautions.  The nights are long with my working at night, but also because Emily wakes up a good amount of times to go to the bathroom and several times she sits there because it hurts so bad. 

Emily has been complaining a lot more of her mouth hurting and she threw up several times this day and each time she had blood in it. Doug had read someone elses time during the stem cell transplant and that they gave their daughter Rincinol.  We are trying this and it seems to work for the mouth to coat the mouth and she doesn't complain.

Doug brought Brianna for dinner Wednesday night and while Brianna and I were eating dinner, Doug texted to let me know that Emily had a temperature of 100.6.  She seemed warm, but I wasn't 100% sure. The drew blood cultures also.

Emily is having more down time now, with not feeling well, sleeping  or going to the bathroom. They did start her on flagile (spelling) for the C Diff.  They want to have 3 negatives in a row for the C Diff to take her off the contact precautions.  They said with C Diff could cause stomach cramping where it hurt pretty bad.

Doug and I are thankful that Soosan, Jesse Grace's mom, prepped us with bringing thick baby wipes, and some diaper ointment for Emily.  we have gone through so many wipes and lots of ointment on her butt because she says it hurts when you wipe. 

This night, Emily's platelet counts were low, but not low enough for a transfusion, however the doctor indicated that if she threw up blood again that they would need to give her platelets.   So she had to get platelets about 10 PM.  Once the platelets were done, Emily starting to break out all over the place turning red where she is scratchy.  She wasn't feeling good at all.  Once the nurse looked at the rash which great quickly all over the place, they had to give her benadryl and then had to test her blood to see if maybe the platelets were infected.Seems like Emily is very bothered by a lot of the stuff that she is getting now, because before she never really had any problems.   After about an hour of getting the benadrul, the rashes were slowly going away.

Emily is still running fevers off and on throughout the night. Emily is doing well and taking things as well as to be expected, however she really isn't feeling as well as she was and is in a lot of pain in her mouth, and tummy. 

DAY +3

Emily was in and out of the bathroom all night and each time she was in the bathroom, she was crying of stomach pain.  We still haven't given her morphine yet because she is still able to sleep through the pain, so it seems that it must be bearable if she is able to sleep.  We are not to keen on the thought of morhphine since so many kids can get addicted to it, and then when it comes time to take them off of it, some kids are having a hard time coming off of it.  

Emily is still having a lot of Loose BM's and Emily's mouth is started to get red and looking beefy.  She pats her chest a lot, which indicates that it hurts in her esophagus.  We hate to see her in pain.  It really sucks.  Emily continued to run temperatures through the day today. Cultures are drawn every 24 hours that she has a fever in. 

Tonight, Doug picked up the girls and brought them both here.  When dad got here, Emily was in the bathroom with tummy pains and we switched off.  I took Emily and Brianna out to dinner tonight away from the hospital, but not far.  Again it was nice to spend some time with them. Thanks honey for bringing the girls. 

Emily ran another fever after the previous 24 hour mark, so they drew cultures tonight.l  So far nothing has come back yet, which is a good thing, so we are going to hope that they continue to stay that way. 

The pain in Emily's mouth has worsened and she is complaining a bit more.  So I spoke to the nurse to see if there was anything else except morphine, she said they have pill form type things, but  Emily wouldn't be able to take any pill types things.  On top of that she still hasn't eaten anything since last Friday.  So, even getting her to take oral meds is hard, because she throws them up. So we will just continue to monitor the pain and see if it keeps her from sleeping.  As it is not almost 4 AM, Emily has been up and down several times crying of pain, I have gotten work done and I extremely exhausted now. However she is now sleeping.  

Thank you so much to all the amazing people out there who have sent Emily beautiful packages and gifts for emily as well as photos to add to her Wall of Cards.  Thank you so much, it really means a lot to us. 

I will try to keep you all up to date more, but like I said it has been pretty busy here and taken care of Emily, I focus more on that than this.  

While I am now having a hard time keeping my eyes open, I really hope that this post makes any sense to you!

Thank you so much for your support.  Thank you for all the love, prayers, thoughts and care for Emily and our family during this time.   We are ready for the process to be over and head home wiht the girls.  

Good Night

Day -3 and -2

Here we are, its early Sunday morning (wee early in the AM) and it is hard to believe that we have been here 6 almost 7 days.

Day -3

Yesterday Nanny came by and spent some time with Emily, which Emily enjoyed very much.  They played games, did crafts and took a nap together.  Nanny even stayed with Emily so I could step out and have some time with Daddy and Brianna, which was nice, but yet at the same time I felt a little guilty about leaving Emily!  Yesterday overall Emily had a pretty good day, she did get sick a few times.  However yesterday was the first full day that she didn't eat anything at all, because she said she is afraid she is going to throw up.  Tried to get her to eat several times, but to no avail.  She is still swishing which is a good thing, but she stopped taking all of her oral meds because of fear of throwing up.  

Dr. Gowda went ahead and changed everything over that could be changed over to IV, and the only thing that could not be changed over was the oral meds for the liver.  I was able to get her to take it once yesterday.  

We are still leaving the room and taking walks, which is a good thing that she wants to get out of the bed and we are happy for that.

Day -2

Saturday was a good day.  Emily had a great morning, she was in a great mood and just overall playful and very happy!  It was great to see her that way, because the day before was not like that.  We were able to get her to eat 2 peanut butter crackers and a couple of pretzels. She is still swishing.  Later in the day, you could see that is looked like the energy was just swiped right out of her and she was just very down and tired.  She laid down and took a nap and then woke up to spend a little time with Daddy while I took Brianna downstairs to eat.  Its a shame that the cafeteria doesn't really offer more food or other places to eat at. Emily had a few bouts of getting sick and also loose BMs todays which she really gets frustrated with the loose BMs because she can't control it and then her underwear get messy.  I told her that she can't help and mommy will take care of it, we have underwear and daddy has brought you plenty more. 

Day -2 was the last day for her to receive chemo (cytoxan) during Stem Cell Transplant #1.  Like I said Sunday she will have a day of rest, no chemo and then she will be rescued with her own stem cells sometime Monday.  Dr. Gowda said there isn't specific time that it happens, but that normally it is between 12 and 2 pm.  The process is fairly easy, it is just the side effects from the chemo. 

When the night shift comes on each night, they are required to do a CBC and check other things as well!  Tonight we figured Emily would need a blood transfusion since last nights was 7.3. All of her counts are dropping and Emilys White Blood counts are at 1.3 and she is hitting the lows and her hemoglobin was 6.5 which probably accounts for her low energy levels tonight.  So, she is currently getting a blood transfusion right now that has been going on for the last 2 hours.   Emily does well with transfusions not requiring benadryl.   I can't sleep when she needs to get transfusions at night because I need to watch her to make sure nothing changes or she doesn't break out.  She just came in to do another vital check and her temperature was just 99.9.  I am hoping it was just a freak thing and going to go back down. Not ready to start the temperatures yet or having any infections.  Lets hope that this was nothing but just a side effect from the transfusion and will go back down.

Sunday

Day of rest and we hope for it to be a quiet and uneventful day and only Emily wanting to play and be happy!    So far things have been going pretty well and we couldn't ask for anything better.

Send all your love, thoughts and prayers Emily's way!

Just want to tell my husband thank you for being an amazing husband and making sure that we are taken care of here by bringing us clean clothes and whatever else we need.  We love you very much. 

Quick Update

Day -6 has ended, and Emily is sleeping and I was able to work some and now I just wanted to give a super quick update as I am exhausted.

Emily complained her stomach hurt and then got sick once around dinner time. This was around the same time that she was getting Zofran. Currently the Zofran is every 8 hours and we had requested it get changed to every 6 hours (this is what we did during Rounds 1 through 6) and the change hasn't been made as of yet. So this will be on our list to talk to the doctor about when he comes in today.

Emily has been very about mommy while we are here. Prior to this starting she was all a daddy's girl and once this started, she wanted me here, and would get upset if we asked her if daddy could stay the night here. The past couple of nights when I lay down with her she would rub my arm and keep saying mommy I love you, Mommy I love you. She is such a sweet little girl, don't understand why she has to endure this, but dad and I both know we are doing the right thing. I did see if I was able to sleep with her because Emily wouldn't take that very well and Dr. Gowda gave me the permission to do so (and said other parents do this as well). Tonight I got a cot put into the room so that I could do my work on the cot and update caringbridge and she got very upset thinking that I was not going to be sleeping with her and I reassured her I was going to be sleeping with her.

The girls were able to visit for a little bit today, which was great to see them and Emily definitly enjoyed seeing them. Jessie, Emily ad Brianna are all amazing kids and we hate that Emily has to go through this, but also that their sisters have to go through it in a different aspect. This hospital stay of course if very different from others, but since after Thursday the girls will not be able to visit, I will be leaving in the evening when dad comes up and spending time with the girls and then coming back to stay with Emily. I won't leave this week while Emily is getting chemo, very particular about it and watching what is going on.

Tonight we received a visit from very nice young lady, by the name of Erin, whom we had never met until tonight, and she knows a good friend of mine that I used to work with through my previous job. She came by and brought a big smile to Emily with some lights to decorate the room (and Emily was excited because they looked like camping lights) and a arts and craft box that was beautiful decorated. Erin thank you so much to you and Roger for your kindness, it really means a lot to us.

Tomorrow about 1130, Emily has the teacher coming to visit and do some work with her, hopefully Emily will feel up to it.

Again just a quick update, for the finish of Day -6, I will try to do a better job at updating everyone daily to let you know how Emily. Thank you again for all of your thoughts and prayers, they mean so much to us.

All the Scans are Back

Well all the scans are finally back and we are moving forward to stem cell transplant on July 18th, we are so happy to know that Emily is moving forward..  Emily did great on all of her scans, she was so strong and did such an awesome job.  Doug and I have watched her grow up so fast in this last 6 months and it is just amazing how strong she has become over all this stuff that she has to go through.  

The bone scan that she had last week came back with a preliminary negative but we heard on Friday it was positive showing the spots on her legs.  It continues to show the spot on her skull, but again when we had these reviewed back at CHOP they did not find any concern with that spot and wouldn't have noted it.  We also heard that the BONE MARROW IS CLEAN!!!!  This is awesome and we are very happy to hear this.  We honestly thought Dr Gowda was holding onto this until we got back from Disney World because he found something in it.  And of course when he told me it was clean, my first question was now it won't come back next week as positive showing anything will it?  He said that is why he waited so long to let us know because he didn't want to give false hope.   We are both really happy about this and our main concern will be to focus on the 4 spots on Emily's legs. 

Wednesday morning, we are all being picked up by the Love Limo and heading to the airport.  It doesn't seem real like it isn't going to happen, but we are all very excited.  Emily tells everyone where we are going.  

Doug and I made a promise to each other to not talk about all this stuff until we have to come back to it. He is right, we need to enjoy the family, each other and just have fun and lay back and watch the girls with huge smiles on their faces to make us smile.  I love seeing them happy. 

Thats really all I have to update with as of right now.  Make sure you are following Emily's Journey on Facebook because I do update with small updates there when I can.  Next week I will try to post a few pictures of the girls, as they are all excited about heading to Disney World. 

Thank you again for everyone's love and support and all the prayers for everything for Emily, it means so much!

Have a great, safe, holiday weekend.  ENJOY!