Super Ryan

We learned a lot today about what to expect. Ryan was so strong and so brave. Everyone should be so proud of him. He woke up this morning in a great deal of pain in his chest and literally begged us to take him to the hospital to get some medicine. I gave him Tylenol and Benedryl and we left about 4 am. He fell asleep in the car and we sat in the parking lot till nearly 8. We met with Drs. Anderson and George, and Dr. Rapkin came by to play with Ryan. They gave him Tylenol with Codeine and it worked fairly quickly. It does wear off and he is uncomfortable for about an hour before he can get more. We were able to schedule his CT scan, but had to wait around until 6 tonight- and he had to be NPO. He was so hungry he ordered a double cheeseburger at Steak and Shake! He will get his port on Tuesday and they will check his bone marrows. I am glad he will get a port. He hated the dressing changes of the double lumen catheter, and this will be so much easier. He won't have tubes on the outside at all and can swim and bathe. If his marrows are clear, they will harvest his stem cells again, which will mean a change in the line, but we will deal with that when it comes. The stem cells will be frozen for use in the MIBG treatment that can follow a successful regimen of chemo. He will be getting Cytoxan, which he has had before, and Topetecan. Each round of chemo will last 5 days and will be done in the clinic-not inpatient-which was great news for us! We had considered moving him to Egleston if the chemo was going to be inpatient. He really doesn't remember much about being inpatient at Scottish Rite, and Dawn and Erika are at Egleston. We have no doubt how much they love Ryan, and he is crazy about them. I think they are angels. He will have chemo every 21 days. The hope is that he will be cancer free after 5 or 6 rounds and then can go to Children's Healthcare at Philadelphia to receive the MIBG treatment. I won't go into that now. It is pretty complicated as you can imagine. Thank ya'll so much for your kind words and support for our family. We are absolutely heart broken, but can only face the future with hope. If we can get him back in remission, maybe the cure will be found. Please, please pray that the chemo will work against Ryan's cancer and get rid of all of it. Ryan's words on the way home tonight were that it was "atomic, evil, infinity horrible news". He is being so strong. I hope the pain doesn't get any worse. Hopefully, starting chemo will get rid of it like it did before. Again, please just pray. Pray that he will feel better, that the chemo will kill all the cancer and not be too rough on him, and that he won't be afraid. Heidi and Will are still taking it all in. I don't like it when they are this quiet, this sad. Love, Les, Missy, Heidi, Will, and SuperRyan