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 29, 2012

Finally an Update

This update has been long overdue and I apologize for not updating sooner.  Again no excuses, just no update.

While at this point, we are just waiting to get all the approvals needed for antibodies, Emily has a few tests that the FDA and NCI needs in order to approve her for the compassionate use of Antibodies. She was in need of a PFT and Echo. So, the Friday before chemo, her PFT was done.  That was such an interesting test, but she did well.
Emily had her 7th round of chemo the week of September 17th. Emily amazed us as each day as she begged us and the nurses was she done for the day so that she could go to school. While Monday and Friday during the week of chemo, she couldn't go to school, Emily made it to school the other days.  We are so proud of her and her strength. When she would get home she was exhausted, but was so excited to be with her friends and her teacher. We are also so happy that Emily has such a great school who has an amazing teacher and rest of the staff stand behind Emily and us.  Thank you Crenshaw Elementary. That Friday, she ended up needing blood and we knew come Monday when she had counts checked she would be neutrapenic.

As expected this past Monday, Emily was neutrapenic and platelets were extremely low requiring a platelet transfusion.  Neutrapenic meant no school for Emily until her counts come up and with an ANC of 0 we just have to wait for them to come up.  We came in Monday for lab counts and then left and went to have an ECHO.   Before heading to the Echo, I noticed that Emily had some bleeding in her mouth, Emily has 2 loose teeth with one of the adult teeth already starting to come through.  Can I tell you how exciting this is to experience something "normal"?  But also makes a parent whose childs counts are low that with the bleeding and low platelets, a bit unnerving.  Emily laid there and was just talking away to the technician who was doing the Echo about anything and everything, it was so cute. She said that the results would be passed over to Oncology by the next day.  After the Echo, we went back to the clinic where Emily required getting benadryl to get platelets and waiting for the platelets.  When the platelets were done she had a reaction causing a hive on her head, keeping Emily in the clinic longer so her nurse could keep an eye on Emily. Afterwards she had a hearing test, she hasn't had one in a year, so it was nice to know that Emily is continuing to do well.  She is borderline normal for high frequency and everything else is normal, we are so happy to hear this, because we were expecting hearing lost with the amount of chemo she has received.  This past Thursday, counts were unchanged and platelets were still low.  Dr Gowda wanted Emily to get 3 units of platelets because of her loose teeth and the possibility of bleeding over the weekend, but before she could get the platelets she would require benadryl and solumedrol which is a steroid to help with the reaction to the platelets. While getting the platelets, Dr Gowda wanted to talk. The results from Emily's echo, showed that the left ventricle was borderline normal and with this being Compassionate Use we are trying to get approval for, the FDA will require further testing and make sure it is normal. We also talked about the scans coming up prior to starting Antibodies  and what the Antibodies schedule will look like.  He did say that the GCSF shots that are required are not completely covered by insurance, and we would be required to pay 20% of the them.  They are still working with insurance to see if this is correct or how they can work around this, so we should be hearing about this soon.  Hopefully they can get this corrected somehow, they indicated that insurance doesn't cover these shots when requested a certain way, so we are just waiting to hear about that. 3 of the rounds will require 14 days of these shots. We talked about the inpatient stays of each of the rounds and how things work, the pain that Emily would feel, the morphine pump that she would be attached to and other things. All of this is things that we are aware of, however we do know that it ups her EFS (survival rate) up 20% and this is what we want for Emily. Dr. Gowda said he also reviewed the scan report from Michigan and according to what he reviewed, he saw the 4 spots were still being noted.  I was a bit confused by this because when we left, we were told that Emily had 3 spots left.  So I've put out an email to Dr. Sholler to get some understanding about this and find out about this. We also talked about how VCU's scans stated that she was clear and scans from Michigan show otherwise.  While this isn't something what we really want to talk much about here, I will say that he has someone looking into this and we will be calling Patient Relations in reference to this just because its a bit unnerving for anyone. Today Emily had a First Pass Test which is a nuclear scan that images the heart when they put some iodine into her line.  This was done for the FDA to make sure that Emily's heart was producing exactly what they wanted it to produce.  Later Friday afternoon, we received an email from Dr. Gowda advising us that Emily's scan met the parameters needed for the FDA. I can't tell you how happy Doug and I were to hear this news. It was one of those, "AWESOME!"  VCU's Institutional Board also met about the request of the compassionate use of Antibodies Thursday evening where Dr. Gowda was the representative from the Oncology group and was given a verbal appoval , so all of the paperwork is going to be sent off to NCI and FDA to get final approval. Hopefully we should hear something in the next 10 to 14 days. Doug and I are so anxious to get this done, because the big hope is that after the 6 rounds, Emily be done by early May 2013 and be done to treatment.  That is surely our hope, but we are not naive.
Our next steps are to get Emily's counts back up, she will have clinic again on Monday to see where things are.   Her ANC is still 0, so we are hoping come early Monday that her counts will be back up so that Emily can return to school.  Emily loves school and misses her friends and is ready to be back.   We are also happy that some of the parents who have touched based with us, and honestly that really means a lot to us.  Thank you!  We also need to check will Emily need to have another line placed to do antibodies, so we will be checking on that.  If this is something that is required to be done, we will most likely go elsewhere to get this completed.  As of right now, it appears that the week of October 8th we will be going back to Michigan for scans to see where things are prior to starting Antibodies.  These scans will help us know where Emily stands prior to starting antibodies and when she gets her scans after the 3rd round of antibodies we determine how things are going for her and if they are effective.  So, lots has been going on in the short period of time, but I have to tell you that Emily is doing pretty well.  She is happy and excited about her teeth that are loose, she is full of love and compassion and she is growing up so quickly!  We really are very proud of her.  She continues to take her medicine like she is supposed to, and we are just so proud of her.

As parents with a child with cancer, we just continue to move forward, while life is busy working full time, clinic visits, scans, traveling, the other girls, normal day to day stuff, the world just continues to go.  We watch Emily grow up,we watch the girls grow up and we are just so amazed at how fast she and the others are growing up. Emily honestly reminds me so much of myself growing up, that is just makes me smile. Dad has this connection with Emily, that is just amazing.  Brianna just celebrated her 3rd birthday, and is doing well in school.  She loves it now and wants to go to school, and loves her teacher Mrs. Robin.  We are so happy she is happy there, and she is working on the potty training.  Doug and Jessie will be celebrating birthdays next week also.  Doug's birthday is on Tuesday and then Jessie;' is on Wednesday and she will be 11. Can't believe she is going to be 11, my gosh has time flown by. She is growing up and doing so well in school, so we are very proud of her. Next week will be another busy week, Emily has back to school on Tuesday night (so hopefully counts are on the up and up) and Jessie has back to school on Thursday night, along with dance on Wednesday.  So, a busy week then with the next week most likely heading back to Michigan.

Sorry for the long update, just wanted to update you all on where things are.   Make sure you hug and kiss your kids and tell them everyday how much you love them.

Please think about our sitter, today after clinic we picked her up and brought her to the house to stay with Emily and during the day there was a severe thunderstorm.  I went to bring her home and upon arrival, we found that a tree had brought down a powerline and hit her house and there was some leaking inside of her home.  We are so happy that she wasn't home when this happened and tonight she is with her sister, but please think about our sitter as she goes through the motions of getting this taken care of.

1 comment:

  1. Such good news to read! Praying about those scans, that they are clear and all that is showing is scar tissue. `

    Kids grow up way to fast. It like you are so busy doing every day stuff then the next thing you know your oldest is a teen.

    Praying for your sitter. How sad!! Praying insurance covers it.