New Soft Tissue Disease

I can't even believe I'm typing these words. They barely even compute. Hans' MIBG scan revealed a 2 cm soft tissue disease lesion behind his heart. It's in a spot common for NB to pop up. Between the heart and the back bone. The bony disease is about the same.

We were bracing to make a decision about MIBG based on relatively stable disease, but now we are making this decision based on new growth in merely three weeks time while on ICE.

We are hoping to make counts and start MIBG therapy in San Francisco as early as Thursday. My godsend of a girlfriend Roxie has committed to be there every step of the way. What do you say to someone who commits to show up for the worst week of your life? Thanks, Rox.

We had some good news, but it is all relatively diminished by our bad news. Hans needed both blood and platelets yesterday. I asked them to just admit us and we were able to get tanked up overnight. The amazing thing was that Hans had NO reacation to platelets! Thank the Lord. Hans' platelets had dropped to "less than 5", and HGB had dropped to 7.4. Hans got both blood and platelets. They were also able to add him on for the bone marrow procedure since we were in house. He completed marrows and they are preliminarily negative for NB. We got discharged and are home for the weekend. Last night Elle was spoiled by Aimee's love and attentions. They went out shopping to blow some of E's Christmas cash. Elle was also taken to work, thank gosh they needed a 13 yr old intern!

Local counts on Monday and Tuesday will help determine if we pull the trigger to go to SF. They have set a very low threshold for platelets of 20 (with no additional transfusions) and HGB of 8.0 (he may have a transfusion to reach that level if necessary), and his ANC must be 750. If he doesn't make counts there is no MIBG opening at UCSF until Jan 26th.

Not only is the MIBG still indicated with the new disease, it is even more urgently indicated. I have some anxiety and negative energy about it. I have to figure that out. Hans does as well, but we'll have to figure it out. It really seems to be our best option at the time. The path is all laid out. I have the understanding that MIBG is more effective on bony lesions than soft tissue disease, but that it is still indicated as a therapy for soft tissue disease that is "MIBG-avid" (a.k.a. disease that lites up on an MIBG scan). This new lesion is MIBG avid.

I have followed kids' stories who have responded in worse situations. The main solace I am giving myself right now is that our path is laid and that Hans has now had two random soft tissue spots (skull and lymph nodes) which have COMPLETELY responded to therapies since July of this year. Dr. Tran said it could possibly be another lymph node. We have lymph nodes everywhere.

We plan to enjoy the simple pleasures of life at home this weekend and push forward next week. I feel like I am pushing a boulder up a hill right now. It's a pretty disturbing visual image that there is a new little tumor sitting right behind our boy's heart. Clearly, no one knows how best to proceed, other than one step at a time, gently and with a whole lot of love. Hans provides us with an eternal wellspring of unconditional love. We gain whatever strength we need from that good, sweet love.