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:
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.