Emily's Next Steps

I've tried several times this week to sit down and write, and seriously every time I go to sit down and write, it just gets harder and harder for me to write for some reason. I feel like my mind just wonders all over the place and I forget what I was doing or even what I was writing. This past week also consisted a lot of working with insurance to see if we could get the GM-CSF covered and anything else, and so far what we came up with, is that it would still be a co-pay that we would have to pay. 4 of the days will be covered by our health insurance since Emily will be inpatient during those 4 days, but the other 10 would have to go through our prescription benefits with a 20% co pay.

There has been lots going on this week. Emily had clinic twice this week, Monday and Thursday with both times needing transfusions. Earlier in the weed she needed platelets, but with the rate of her hemoglobin falling we knew came Thursday she would need a blood transfusion. Which by time Thursday came, she was a bit pale and she did new a blood transfusion. Her platelets were at 20, but to be on the safe side since she is still holding onto those 2 loose teeth and the possiblity of traveling, they went ahead and gave her platelets.

Dr Gowda informed me on Thursday that Emily was approved to start antibodies by the FDA, which for us this is awesome news. The last thing that was awaiting approval was CTP or something like that, he explained this as where the IL2, CH14.18 and any other medications that would be neeeded while inpatient.

Emily's Next Steps:
This next type of therapy that Emily will be going into, and hopefully the last, is monoclonal antibody CH14.18. There are guidelines for this therapy (since it is a clinical trial) that states you must start this within 100 days of finishing radiation (because all of the patients in the clinical trial, the information is for research purposes), well because Emily finished radiation last year the first of November, and we learned she didn't qualify for antibodies, she was denied to start since it was considered last year she was progressing. Because she went over the 100 days, we requested for compassionate use of CH14.18, which Dr. Sholler and Dr Gowda worked on to get Emily approval for. Monoclonal antibodies is A chimeric mouse/human monoclonal antibody with potential antineoplastic activity. Monoclonal antibody Ch14.18 binds to the ganglioside GD2 and induces antibody-dependent cell-mediated cytotoxicity and complement-dependent cytotoxicity against GD2-expressing tumor cells. GD2 is overexpressed in malignant melanoma, neuroblastoma, osteosarcoma, and small cell carcinoma of the lung. Dr Gowda talked with me about this therapy and I had to sign the consent forms that would be sent off to CTP to prep the medication that would be needed for VCU. We walked through the consent forms and he went through the calendar, because we were trying to figure out when she would start, with the hopes of not being inpatient during Christmas or Thanksgiving. With a tentative date of October 15th date as of Emily starting Antibodies, she shouldn't hit Thanksgiving or Christmas, but would hit the New Years Day Holiday, but I think that we would be ok with that.

So, it looks like this:

• 10/15/12: Round 1 (24 days) inpaatient on start of day 3 for 4-5 days with CH14.18 and 14 days of GM-CSF shots, that the ones done at home, mommy will have to give. She will also be on accutane for 14 days.
• 11/5/12: Round 2 (28 days) inpatient on day 24 for 4-5 to start IL-2. Go home for the weekend and come back 
• 11/12/12: inpatient on Day 31 for 4-5 days to receive CH14.18 with the IL-2. 14 days of Accutane during this 28 days
• 12/10/12: Round 3 (24 days) inpatient on start of day 59 for 4-5 days with CH14.18 and 14 days of GM-CSF shots, that the ones done at home, mommy will have to give. She will also be on accutane for 14 days.
• 12/31/12: Round 4 (28 days) inpatient on day 80 for 4-5 to start IL-2. Go home for the weekend and come back 
• 1/7/13: inpatient on Day 87 for 4-5 days to receive CH14.18 with the IL-2. 14 days of Accutane during this 28 days
• 2/4/13: Round 5 (24 days) inpatient on start of day 115 for 4-5 days with CH14.18 and 14 days of GM-CSF shots, that the ones done at home, mommy will have to give. She will also be on accutane for 14 days.
• 2/25/12: Round 6, no inpatient stay only requiring Emily to take accutane

As a parent, we have to admit, we are really nervous about this next therapy, but honestly with any therapy that Emily has been on we have always been nervous and worried about. We are thankful for our friends Sue and Jojo from PA, who are driving into town during the week of Emily's first inpatient stay to be of aid however they can help. Sue will help at home and be at bedside at the hospital wherever we need her. Jojo will be at the house. We thank you wonderful friends Sue and Jojo, for being such amazing friends and being by our side when we need you, THANK YOU. Sue thank you for offering to come and be by our side and help, this is definitly helpful for Doug when I stay with Emily inpatient, to help at home with Brianna or even be at the hospital. THANK YOU, Thank you for being such wonderful family to us. Dr Gowda explained this therapy causes a lot of pain, so Emily will be on a 24/7 morphine drip or fentanyl, and the pain should stop once the medicine stops. Her blood pressure could go up or down which could cause her to be placed on medicine to regulate it. This is the reason she will be in the PICU because she needs to be monitored and have nurses that only have 1 other patient. She could have high fevers, and whenever she has a fever, they continue to follow the protocol of doing cultures, however most of the time nothing grows on the cultures. He also explained, it is a 4 day stay, but that it could be longer depending on how Emily is doing, but it depends on how the doctor feels Emily is doing.

We have done lots of reading on Emily's nexts steps, but instead of assuming what we have seen/read for others, it could be different for Emily. Every child is different, but we will be keeping everyone up to date on how Emily is doing as often as possible.

www.nomorenb.org 

So we received notification of scans next week, with the late notification of dates, we will be driving. These scans are really for us and the doctors to know where Emily's stands when she receives scans after round 3 or so of antibodies to see if the antibodies are working. While we are in Michigan, we will be meeting up with Robin and Kyle Matthews, Ezra's parents. Ezra also had NB, and passed away from aggressive NB. Ezra's parents started a website, www.nomorenb.org, and they would like to interview us and do a video. While we are nervous about videos, we want to spread the awareness of Neuroblastoma and make people more aware and we look forward to meeting another family!

Thank you so much for the cards that Emily has received, they certainly bring a smile to her face. Today she received in the mail some mail from a 6 year old, Sydney who wants to be Emily's pen pal. How exciting, Emily enjoyed the pictures she sent and looks forward to sending her a little something back. Thank you again to everyone who has been so kind and loving during our journey, it really means so much to us.

Well, it is late and I need to get some rest, but I wanted to update and let you know where things stand. We will keep you up to date on our journey next week in Michigan with scans. We are still working on some things to get the antibodies started, but hopefully everything goes through ok and we don't have any issues.

Remember to hug and kiss your kids and tell them how much you love them!!!

Emily during her blood transfusion on Thursday