Off to DC [www.soc-neuro-onc.org]
God seems to be leading us in the direction of Washington DC. We received a call from Dr. Roger Packer's office. He is at the Children's National Hospital in Washington DC. I found some information about him online (see above link). He comes highly recommended from several sources.
Our appointment is at 8:30 on Tuesday morning. We will be seeing him in person (sometimes these guys have you see one of their research team members). He will examine Abby, then have his radiologist and oncologist look at her MRI's, CT scans and pathology slides. They will not have the ATRT diagnosis before they look at the evidence so it will be a true "blind" second opinion. Then, he will meet with us and tell us his diagnosis and treatment recommendations. I get the impression the meeting will not last long.
God has been so great with this part of our journey. First, when I spoke with Heather (Dr. Packer's Nurse Practitioner) she said the soonest we might get in to see him is June 1. After I expressed concern about waiting, she put me on hold for about 5 minutes. She came back on and said she cleared a spot for us on Tuesday before he leaves town on Wednesday. Second, our case manager with Cigna said that Dr. Packer is on their approved list so insurance will cover the appointment. Third, Children's National Hospital has a concierge service that helps arrange accomodations and transportation for out of town patients. Our social worker at Banner Desert Hospital here is also helping with that. We have been told that an organization called Mercy Medical will handle our transportation for free. They are also finding us accomodations within walking distance of the hospital.
We are so thankful for the way God has worked out this situation. Thank you for your prayers. You can pray specifically for a safe trip. We think we'll be leaving Monday and returning Wednesday. You can also pray that Abby will continue to recover quickly. She caught a cold so she's a little more worn out since she's fighting that off. We will be taking Josiah with us. Our Child Life Specialist at the hospital said that families dealing with cancer seem to do better when the well siblings are included in the care of the sick one. Pray that our time together will be a special time for the 4 of us. Pray for my parents and any other family and friends who will be caring for Daniel and Elizabeth while we are away. Pray that Daniel and Elizabeth will stay healthy...Elizabeth is VERY crabby today :)
On a lighter note...we haven't said much about Daniel through all of this. He is our 2 1/2 year old. You never know how much toddlers absorb what's going on around them, but he showed us this morning that he knows the importance of prayer. Josiah prayed at breakfast thanking God for the day and the food etc. When he was done, Daniel looked at Josiah with a very stern look and said, "Josiah, you forgot to pray for Abby!!!" Thanks to you all for being like the persistent widow asking God continually to heal our Abby. Here are some words from a dear friend of ours. May they be an encouragement to you all as you pray on our behalf.....
"On the spiritual battlefront, the scripture that keeps coming to mind is the parable of the persistent widow. She goes to the king over and over and over again until the king gives her what she asks. Jesus uses this to illustrate a point. God wants us to come to him persistently with our requests, not because somehow we change His will, but because He takes great pleasure when we seek him with great persistence, recognizing He is exceedingly generous to those who ask. I want you to know that Jennie and I take this attribute of God very seriously, and will be presenting our requests(and have already started) with a persistence that would make most people do anything just to keep us from coming back. Praise God He takes pleasure in this! Abby is going to be presented to the King with all she means to us and all that we know she means to Him, that we so much want her fully restored to health. Also that we fully believe if God is willing she will be made well. God already knows how much we want her here with us, but know for sure, He is going to hear it a lot more very soon. "