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.

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