Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Saturday, September 24, 2011

Day +7-9, Stem Cell #2

Today, Mass General had a meeting to review Emily's scans.  We don't know the status of the review, but we do know they were meeting as a team today to review and then next week they will review with a conference what they concluded from those scans.  According to the secretary from Mass General in the Proton area, she indicated we would hear something mid week of next week.  We also understand that MD Anderson will be reviewing Emily's scan early next week, however we have not heard anything from them.  We are anxious to hear the status so that we can move forward and at least know what we are doing.   We are anxious to hear the status because we have heard that Mass General is Top Notch hospital and we have done our research, and then when Dr. Allen Thornton from Hampton University Proton Therapy Institute referred us to them since they would not be ready for children, we knew it was the best place. A friend of mine, Rachel, whose son, Ethan (his caringbridge page),  is currently in remission from Neuroblastoma, thought I ought to check with our health insurance to see if they offer a travel and lodging policy.  She said that theirs did and it was really helpful. All I could do was try and see what would happen. The first woman I spoke to told me she would call me back before the end of the day since she wasn't really sure, and since I didn't hear anything, I called back later and the woman that answered the phone actually laughed at me and asked if I knew I was calling my health insurance provider. Um yes, I am aware that I am calling my health insurance provider. Anyway, I called back again and spoke to another woman who was really nice and indicated that it wasn't something available under our insurance, like I said before it was worth a try to see what they have for people who are undergoing treatment and have to travel.  Radiation is the next part of Emily's journey after stem cell transplant.  She will have to be sedated every day and since she is a child they are normally up first which is thankful because when you have to be sedated, you can't eat after a certain time.

Its been really busy the past few week here with Emily!  Thankfully she has been fever free for almost 2 days now, however the pain has not gone away!    2 days ago, because of the pain, the Hem Onc doctor wanted to get a CT scan of her chest and abdomen.  Per the review of the CT scan, the scan is still 100% gone and only shows calification and shows some haziness in her chest area. The haziness in her chest was of concern for the doctor because she worried it could be the early start of pneumonia.   The CT scan in her abdomen showed she has minor colitis which is causing much of her pain.   Later that evening the pulmonary specialist came in and reviewed her scans and at this time that it was not pneumonia, but that one of Emily's antibiotics were changed to something a bit stronger to help with that and that they would continue to look and make sure she was not getting pneumonia. Thankfully at this time she does not have pneumonia, but the pain in her stomach is still pretty painful.  She screams out in pain.  At night she has been on TPN and while on the TPN she has been throwing up 3-4 times a night which accompanies diarreah most often.  A few of the times she has been throwing up a lot of blood which one of those times she had to get Platelets because she lost so much blood.   The doctor didn't visit yesterday so we didn't get to ask any questions or find out more about the throwing up while on the TPN.  She did come in today and was concerned that Emily still had a lot of pain in her stomach.  She said she was thinking of having them do another x-ray, but that it probably wouldn't be today. She did decide to stop oral medicines for right now because when we gave Emily her dissolvable pill and ursodial, she threw up hard.  Dad was here when she did this and I was downstairs eating, but she screamed out in pain and threw up a lot of blood not too long after.  She doesn't want to do a lot of walking around which is when we are noticing when is crying out more. Another x-ray was done and the x-ray showed a lot of air in her intestine.  Later after the radiologist reviewed the scan and the doctor called the nurses to let us know, everything was cleared up and she only has the air in her intestines and really needs to walk to get that out.  That is great news, yes, but only if we could just get her to walk.  She doesn't want to walk, because it is either she is too tired or her stomach hurts.  The PCA pump is still being used.  Tonight they changed her TPN to start at midnight to see if she still throws up like she has been doing the nights before.  Because Emily has had so much diarrhea she has had potassium transfusions daily. 2 days ago, Emily had to get lasix (which you all know I am not a fan of) but Emily was swollen in her fingers and her face, so to get the fluids out, they had to give her lasix and that night after receiving it she urinated more fluids than fluids she received.  This morning she was pretty swollen and up 2.5 lbs from admission, however throughout the day she seemed to lose those pounds and would not need to receive lasix today. Thank goodness.  

Tonight Emily's counts came back and her White blood count is .5.  Yes, that is right .5.  Hell yea, ready for that nasty mucositis to go away and Emily to come back. I hope that this will take care of her nasty pain in her stomach.  I miss her, I miss seeing her running around and playing. So, lets hope that the nasty stomach pain will go away soon!  Seriously!! This road here has been long and we so thought that Stem Cell #2 was going to be a lot easier, and honestly it really wasn't, in terms of pain for Emily, this was a lot harder.   Monday Brianna will be 2 years old on September 26, hard to believe, but she will be. We are just all ready for us to be home together.  Doug will be celebrating his birthday on October 2nd and Jessie will be celebrating her on October 3rd, so we have a lot of birthdays coming up.  We are looking forward to having one big celebration when Emily gets out that she will be able to take part of. 

I felt like tonight was a repeat of last transplant when we were here.  She was sleeping and woke up and her nose was running (or so she thought and it didn't drip on my arm like it did last time) but her nose was bleeding.  After holding her nose to get it to stop, she then started throwing up a lot of blood.  So, she needed platelets to  help stop the bleeding and will also need a blood transfusion about 6 AM.  Hopefully tomorrow will be a happier and brighter day, and Emily will be feeling better and saying less of her tummy hurting.  This is my hope..  It already almost 3 AM, and I am going to work for part of the day while Dad comes and stays with Emily for a little while. 

This has been a long road, and I swear this road only feels like it gets longer and longer and I don't feel there is a road ending anytime soon, I just keeping looking for that final destination, and we just haven't reached it yet.  Will we ever?  No! .   As of late, I don't feel that my head is all there, and I honestly just feel lost at times and sometimes in the middle of talking, I find myself lost and can't find the simplest words, its like I just can't remember.  I find that I don't remember things that I used to remember so easily.  Doug and I are both feeling like this!  

I want to reach out to all of our supporters, we wouldn't be where we are today without you all.  We read each comment that is left onCaringbridgeEmily's Website and Emily's facebook and each one means something to us.  It is amazing the amount of support that has been out there for us and we wouldn't be where we are today without you all.  We have met some amazing people, organizations and other families going through what we are going through and I am thankful to each of them.  We are thankful to our wonderful families, who are there and they mean so much to us.  Thankful for our community of people from work, mommy's board and just the love from people we don't even know. Thank you for the cards being sent to Emily from all around the world from people we don't even know.  Each card is read.  We will be placing all of these in a very special box so that when she gets older she can read all of these cards and know how many people out there loved her and how many lives she  has touched, because I know it has been many.  We are thankful for the packages of gifts that are sent to Emily, because she gets excited with each of them.  I can't tell you all how much it means to our family.  Emily loves mail and Dad is so excited for when she gets out of the hospital that he will give her a key to the PO Box so that she can open her box and get her mail.  The love that is out there is just amazing, and we thank you all so much all over the world.  !!!

Well, I must head to sleep so that I can wake in the early morning!  Good night!  Continue to leave lots of love and care for our sweet angel.

Its Childhood Cancer Awareness Month:
The past few weeks I have watched Emily go from running down the halls to laying in the bed. We have wiped the saliva from her mouth because she won't swallow, to changing her clothes & linens 6-7 times a day because of the diarrhea accidents from the chemo, to hearing her cry/scream of the pain she feels in her stomach from the esophagus, to pressing the pain pump to control the pain, watching her throw up blood, bloody noses or others. Emily has had to get blood, platelets, magnesium, potassium, calcium & many other transfusions because of all her body is going through, she hasn't eaten in 8 days. This is the life that we live with Emily and I wouldn't want to be anywhere else, but its hard. Its childhood cancer awareness month, are you aware? If you aren't, do something to make yourself aware, spread the awareness.

Tuesday, September 20, 2011

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.

Friday, September 16, 2011

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.

Wednesday, September 14, 2011

Day 0 today...

I really wanted to sit and give you guys a pretty hefty update from Proton Radiation to Stem Cell, and honestly I have some work to do and I am just completely exhausted.  Tomorrow is Day 0 and Emily will be rescued with her own stem cells. So far she is doing ok.  She did get sick a couple times from the chemo and has some ups and down, but overall she is doing well!  We hope that this stays the same.  However her counts have dropped and as part of the side effects is mouth sores and such.  So we will have to see what happens.

Anyways, lots more updates to be given in reference to Proton Radiation where it looks like we will have to travel in order to get Emily what she needs to have less radiation on parts of her body that does need radiation and not t cause cancer in those parts of her body later  Updates on Stem Cell Transplant #2 and updates on September being Childhood Cancer Awareness Month.  

I promise to update more, I'm just exhausted.  

Remember to always hug and kiss your babies.  

Lastly, Emily's address:
So many people have been asking for our address and want to post it on websites to send Emily cards, packages or even donations, however sometimes giving out a home address we have always felt uncomfortable posting, so we have a PO Box that you can send cards, packages or donations.  This will be a permanent address, so it will not change and you can post for others.
Emily Hubbel
P.O. Box 5383
Midlothian, VA 23112
Thank you for your love and support as we continue this journey!

Tuesday, September 13, 2011

The Hubbel's Address

So many people have been asking for our address and want to post it on websites to send Emily cards, packages or even donations, however sometimes giving out a home address we have always felt uncomfortable posting, so we have a PO Box that you can send cards, packages or donations.  This will be a permanent address, so it will not change and you can post for others.

Emily HubbelP.O. Box 5383
Midlothian, VA 23112

Thank you for your love and support as we continue this journey!

Thursday, September 1, 2011

No News is Good News

No news is good news is the post I have for you all today.  But that is what it has been really since Emily has been home.  Monday marked 3 weeks exactly since Emily has been home. August 23rd, marked 8 months since we learned that Emily had/has neuroblastoma.

August 8th, Emily came home from the hospital from Stem Cell Transplant #1  and was more than happy to come home.  She did however come home on TPN and lipids (fats) by IV.  For 6 days she was on TPN for 18 hours and it seemed the only time we could get her to eat anything was when she was off the TPN and it was hard to coordinate the time to make sure that she would be on the TPN when I was home and be off the TPN when I would be home from work to take her off of it.  She was still getting sick on and off again while on the TPN.  After 6 days she was able to go from 18 hours to 12 hours, they will not let them immediately come off of TPN, because their body can go into withdrawals.  When she went to the 12 hours, we were able to do this at night and she would eat more during the day which was nice.  One night we had a failure with the pump that the Lipids was on, Emily had woke up at 2 AM complaining her stomach hurt and threw up everywhere, when I checked the pumps, she was given a full bag of lipids within a short period of time (which she never received a full bag and the lipids were always slower than the TPN) and this is what caused the tummy issues.  Thankfully she didn't have any problems and her electrolytes looked normal.  After 4 days of 12 hours, the doctors removed Emily from the TPN and Lipids as long as she continued to eat and drink.  Emily was visiting the clinic twice a week to check her counts, and electrolytes, and thankfully Emily never had to receive any blood transfusion while out of the BMT unit or Platelets.  I think the only thing we ever really noticed with Emily was she would be fine one minute and then the next her color would be very pale and she would have no energy whatsoever.  We give her orange juice and she would feel better and come around and have more energy.  

Emily will be admitted on September 7 for Round 2, Stem Cell Transplant.  We are nervous about this, however we are ready for this part to be over and done with.  We hope that she will go through this process easily and fight Emily style like she does. We do know that she can have sores again and much of the same things she went through before, but we are hopeful she will go through this easily and not endure as much pain as she did during the first transplant.

This past week, we have encountered a 5.9 earthquake with the epicenter being about 40 miles or less from us, Hurricane Irene with winds up to 55 miles an hour or so and many aftershocks from the earthquake.  We have been very thankful in each of these incidents that we have all been safe and our home is still safe and no problems.  The only problem we had from Hurricane Irene was the girls swingset was blown over and a couple of boards were broken, which we will have to replace. We are thinking of all of those who have been misplaces or are without power.  This past week, we also had family (my dad's sister's daughter) who just moved into her apartment with her new husband and two kids and did not have renters insurance on her apartment yet and there was an explosion and they lost everything in the fire including their vehicles.  Thankfully they were all safe, but again had nothing.  Doug and I wanted to give back and went through all the things that we had to give them some stuff to have and sent 2 boxes full of stuff for them. 
These past 3 weeks at home have been pretty busy and honestly I don't get on the computer all the much, so I apologize for not keeping you all up to date, however with working, coming home and taking care of the kids and everything else, life has been busy!   All of the girls are doing great though.  Jessie will be starting 4th grade, so we have been preparing for her to start school next Tuesday, and Brianna is just as full as life as she always has been.  Emily she is doing well, she is a fighter and that will never change.  She too is full of life and enjoying time at home with her family and camping when we can.  She does get winded quickly which we have noticed, but overall she is doing very well and we are very, very proud of her.

Hopefully I will update tomorrow after the consultation about Proton Radiation.  I'm exhausted.  I would love to update more, but really wanted to give you guys an update. 

Most of all, I just want to send out a huge thank you to all of the wonderful people out there who are so amazing and have been so amazing to us.  I can't thank you enough. Also, the address that we previously had before while in the hospital will be the same address this time.   

Remember it is September and today is Day 1 and it is important to make people aware of Childhood Cancer awareness month. Please share Emily's Journey as well as other's children's journey who are going through this journey of life they don't want to be going through.  It is important to understand that just because these children have cancer, doesn't mean anything is wrong with them, because they don't have hair doesn't mean anything is wrong with them.  Guess what they are children too, and most of these children lose a lot of their childhood because they are fighting for their lives and understand way to many things that most kids their age will never have to understand.  Teach your children that just because someone looks different that it doesn't mean something is wrong, all children should be loved and cared for the same.  Most importantly don't stare.  Sorry these are a few things that we have encountered just recently.  But I think these should be part of making people aware, because it is important for people to know and understand.  So, lets share about Childhood Cancer.

Love and kiss your kids.

Good night.