City of Hope

Wow! 2 posts in one week!! Just wanted to post an update and prayer request. On Wednesday we went to our out of pocket consultation at City of Hope. We were first told by the lady at admissions to try to talk to the financial advisor about getting on some kind of program or charity to pay for treatment there. Our original plan was to just get the consultation and take the recommendations to the radiation/oncologist that our insurance does cover. Unfortunately, the financial advisor told us that the type of radiation and the place it would be done at is far too expensive to be able to go on any kind of program. She said our best bet is to do what we originally planned. We were very bummed to hear that because we haven't felt comfortable with the R/O our insurance allows. He was a great doctor and very nice but is not familiar with Jarrod's type of tumor and has only dealt with a couple of cases that had to deal with the spine. I'll come back to this next part after I tell you about our appt.

It was so strange being there at City of Hope--seeing all the people with cancer who have no hair and some wearing face masks. It really hit me being there. I was really creeped out and couldn't believe we actually had to be in a place like that. It made me cry a little. The R/O gave us A LOT of info that we weren't quite ready to absorb. Nothing too bad but it just hit us again about our new reality. We kind of forgot about it since he's been home. We've been so busy with the kids, daily life, therapy, and everything else that we haven't even given thought to the "MALIGNANT" tumor and everything that comes with it. The risks of this or that and the chances of this or that. We were yet again hit by that painful 2x4 of reality. Ew. On the other hand the doctor did seem very positive and gave us the impression that we are on the better side of the scale. We try to remember that part and not focus on all the "what if's." We do understand things could be a whole lot worse but it's just a frightening thing to even have to make that part of our discussions. We'd REALLY like to have treatment there at City of Hope. The doctor we saw specializes in the spinal area and has done it numerous times. He even said that he just saw a patient with a similar story for his 5 year check up and is now doing GREAT. Unfortunately our insurance will NOT or at least HAS NOT given us the approval to go there.

Today we saw Jarrod's primary physician to get a referral for another MRI (to confirm there is no new growth) and a spinal tap (to check if there's anything in the spinal fluid). We told her about our appt and our uneasy feeling about the doctor we would be seeing that our insurance did approve us for. She was concerned about our uneasiness and said that she would talk to the head of the HMO group (? Not sure of the terminology) and make sure we do get authorized for City of Hope. She said she would not stop hounding until everything is all settled with our case and we finally get the ball on the roll. We were so happy to hear that. It was so nice to have someone fight for us like that. Please pray that God continues to direct us. Pray that the primary physician's efforts to get us authorized for City of Hope would be blessed. Pray for comfort as we go through this as it is scary and new for us.

I will keep you posted as to what happens. We should hear by Tuesday. On a very happy note, as some of you saw on my Facebook page Jarrod took some steps yesterday WITHOUT the walker. He walked from one side of the room to the couch, turned around and went back. I didn't expect him to turn around. I thought he'd just plop on the couch but nope, he kept going! To top that off he walked up and down some stairs today at the doctor's office. He passed the handicap ramp and decided to just try the stairs. It was a very exciting moment for us. I'm so proud of his accomplishments this week. This new confidence he has is just BEAMING. I'm so proud of him. He continues pressing on...

:)