This morning I was awake early and couldnt go back to sleep and Doug was awake as well, and then fell asleep. Doug and I talked yesterday after leaving the hospital and the more we sat on it the more we felt like there is more treatment options out there and sitting with no trial but just to try these drugs on Emily and move forward just wasn't what we wanted to see for Emily. So this morning at 545 am I emailed Dr Sholler and explained the results from the MIBG scan we received and what Dr Mosse said. Dr Sholler replied by 853 am when we were bringing Emily to surgery. She explained that the two chemos were a good suggestion although they do have quite a few trials out there that Emily would qualify for. Here comes that word, Sholler has "HOPE" for us. She further explained that they would be happy to see her and see what option would be best for Emily.
Surgery went well today, Doug and I were both nervous about the day. We didn't tell Emily about the upcoming surgery, because her anxiety gets to her and she gets really upset. At 4 years old she understands a lot, but there are just somethings that at 4 years old it is best not to tell her. We were glad that Dr. Mattei was well enough from his previous surgery that he was able to do the broviac removal and place the port in. This port opens more options for Emily as in "quality of life" and more of what she can do, and this is what we feel is best for Emily. After the removal and insert, she would have a bone marrow biospy/aspirate complete to check for disease in her marrow.
Emily did well, she is in pain and her chest is hurting, but she is happy that she can now go swimming. She looked down at her chest and said "mommy my line is gone." I said, "Wow that is great, you can go swimming now!" She was so excited that she said "Yes, and she couldn't wait to tell Daddy that she has a cool line now (no line, but called a port)". We are happy that she is happy with this decision and that she can now do more things. I am sure the first time it is accessed maybe a little bit traumatizing, but I think we can work through it and all will be fine. However, no more dressing changes for Emily which she is excited about and no more nightly flushing. When Dr. Mattei came out and said she was done with the removal and insert, we were happy to hear she was ok and then she was having the bone marrow done. Dr. Mattei did give us a prescription for of tylenol with codeine because he said that she will probably be in pain for a few days. After getting back to the camper today, both Emily and I fell asleep for about 4 hours together. She is laying back down again with Daddy while I write this update tonight.
While waiting for Emily is surgery, we received a call from the social worker at CHOP that she knew that we had some medicine (chemo's and antibiotics) to pick up for Emily, but that the Timidor (temolozide) was not completely covered by our insurance and that it was quite a bit out of pocket. I asked her how much we were talking about and she said $500 per cycle. OUCH. I explained to her that Doug and I are putting these chemos and antibiotics on hold right now until we get a second opinion since CHOP is stating there are not any clinical trials available for Emily right now. While, we still may be coming back to these, right now before we rush into this, we are checking to see what else may be available. I did ask that the social worker to continue to look into this and see if there was something that we could do about the $500 and how they could help should we decide to come back to this. But Emily is stable right now, and we have a little time to see if there is anything else out there that can help, however Doug and I don't like the thought of Emily being off treatment for too long, so we are already moving toward with Sholler and getting what is needed! Being off of treatment for too long, allows for the disease to move forward and this is what we don't want. The social worker said she would email the team, which I then also emailed the team and explained that we want to wait before moving forward and making the wrong decision. As we were walking back from Emily waking up from general anesthesia, we ran into the nurse practioner, so Doug explained to her what we were doing and she understood and felt that it was good idea to get other opinions.
We did reply back to Sholler and would like to have a meeting with her to discuss our options available for Emily. Their social worker is working to get authorization and tomorrow I need to get our Express Scripts (prescription) information to give to them. We don't want to wait to long and want to get this show on the road, so we wait to hear back for the appointment to be made and Sholler will send out a jet to pick us up to get us there. We will continue to keep everyone updated on where we are with things.
Please send us our thoughts and love that we make the right decisions on getting Emily the best possible treatment available. Doug has been doing a lot of reading about the trials that Sholler has sent us that is available, so he is reading into them to see what is best.
Sending our girls at home, Jessie and Brianna, much love and thoughts. We miss you girls. We should be leaving here Saturday sometime, staying her making sure Emily is ok. Make sure you hug and kiss your kids each night and tell them how much you love them. Sending our love to RJ and Joey who lost their fight to NB. We have to find a cure, because this has to stop happening. We will keep fighting to find the cure.