Today was a day we've been dreading. David was moved back to Riverbend from the Rehab Center because he lost feeling in his arms. His left arm has a little bit of movement in the elbow/shoulder but no movement in the hand and his right arm is completely immobile. The Dr's moved him back to the hospital and did a series of MRIs.
While we were waiting to be transferred David asked me to call his parents and ask them to come which is something outside of his normal character. They were in portland visiting and came down immediately with David's sister Diana and her husband Eric. My Dad also came to the hospital to make sure I ate and Owen went home with my Step-mom after school. I'm thankful that all those people were there so that I didn't have to explain to everyone, especially his parents, what was happening and they were given the opportunity to talk with our doctor and ask all their questions as well.
After getting all the MRI results and consulting with numerous doctors regarding the findings the Dr came in to talk to our whole crew of people. After MUCH discussion about what they had ruled out (me thinking: get to the point!) he said that he tumor has grown beyond the reach of the radiation so that's no longer a treatment option. The tumor has moved up his spine into the neck up to C2. If it goes any further up it will cut off his respiration. It's extremely aggressive and he suggested that it may be Grade 4 but that they may not have gotten the part of the tumor in the biopsy that was grade 4 so it only showed up as grade 3.
They want David to take the chemo drugs he got in the mail today (finally) and tomorrow they're going to add a chemo treatment to that regime, the same chemo his brother is on but in pill form from what I understand. They also upped his steroid dose to 20mg up from the 1mg they had gotten down to while trying to wean him off them steroids. The steroids should help ease some swelling... if in fact swelling is causing his problems. If it's just the tumor and not any additional swelling then it won't help. The Dr said if the chemo meds make him too sick it won't be worth doing in which case they will just do everything they can to make him comfortable.
I went in the hall to talk to the dr after he left and I asked him some pointed questions about things like will we see cognitive changes in him before the respiratory problems, like will it grow into his brain. He basically said that no, the respiratory system will shut down before that happens. In some way that's a relief to both of us. I didn't ask "how long" because he just doesn't know but he kept saying he's concerned which is never good and I asked about how long we could wait before telling people to come see him. He said very directly, "don't wait" I immediately asked for Owen to be brought to us. After talking with Owen he asked if I could take him home tonight. I wish I could do more for him but I figured that was a little thing I could do. I checked with the nurses and David will be fine and they have instructions to call me if ANYTHING changes. Anything. Owen and I are going to spend the day with David tomorrow and we're expecting a lot of visitors. Don't let that deter you. We don't know what will happen and I want everyone to know that they shouldn't wait. I'm not saying that I think he has 24 hours or anything, we haven't given up, but I don't want anyone to regret not saying whatever they want to say because they were waiting to see how the remaining treatment goes.
We both want to say that we couldn't make it through this without everyone who has been supporting us from those here in town to those all around the country who have reached out in ways we never could have imagined. Your love and support is the only thing really holding us up. We keep assuring Owen that no matter what happens we're going to be ok and we had a lot of really difficult discussions tonight and I'm sure we'll have more in the very near future.
Not that I don't appreciate everyone but I especially want to thank my sister-in-law, Ricki. Her husband, David's brother, has had terminal cancer for 3 years and her experience, love and support has guided me in a much hastened crash course in wife/mother survival mode. Thanks for all the advice and tremendous amounts of love.