By the skin of our teeth...

What a couple of days.... I don't even know how much of this story to tell you. I guess I should say that CLINICALLY things are sort of deteriorating for Hans. He is in pain. It hurts to get up, get picked up, or to move around much at all. It is shocking how fast things change! He isn't eating well and has lost the 5 pounds he packs on when he is doing well. He is down to his "fighting weight", a mere 16.5 kilos, when he is not doing well. I checked out a wheelchair from the hospital yesterday because it hurt him to be carried around by me. I've never had to do that before.

We have been through the wringer here! At yesterday's office visit we got preliminary news that bone marrow aspirates were clear. I was consented for the Antibody therapy. All plans were made to START by giving shots as of today and admit Hans on Sunday, and off we went. BUT THEN... on my way to the pharmacy to pick up the yet-to-be-approved-by-our-insurance GMCSF injectable, I got a call from our doctor. My Pollyanna self never ceases to amaze me. I thought I had left my consents in the office. NB mamas will probably chuckle, the docs never call you for the little things. The lab had called her back. They found some NB in the aspirate. Long story short, the NCI approved him for the antibodies again this morning, since the aspirate was less than 10% positive. However, the biopsy (bony part) is still pending for 48 hrs.

 We are going to start today! This is the rough schedule: Shots at home for three days, inpatient for 5 days for antibodies, shots at home for another week, Accutane at home for 14 days. Then, round two is a little different. I still plan to go into more detail on the shots (GMCSF), the Accutane, and the IL-2 that he should get in rounds 2 and 4. This therapy will continue, if Hans is successful on it, for 5 months.

 I am both terrified and grateful. It is clear that Hans needs to be on a therapy now. His bone marrow aspirate, as well as his clinical picture, are telling us that. We don't like it that Hans has a positive marrow. But I remind myself that his marrow has always (somehow) cleared quickly. To my memory... he has had positive marrows at FOUR points in his treatment history. Each time, the marrow cleared as soon as the next therapy began. Hans is a responder. His bone marrow is particularly responsive. Unfortunately, his "Zombie Tumor" tends to go away for a while, and then come back to life again. Dr. Araz pointed out that MIBG isn't particularly effective on marrow disease. Hans hasn't had another type of therapy in now nearly 5 months. We've let the NB act up. I find it hard to wrap my mind around the fact that Hans had near-perfect scans just THREE WEEKS ago! And once again, we found ourselves in the situation of biding time to wait for the perfect therapy. Our doctors had to jump through a lot of hoops to get this therapy approved for Hans. I am going to choose HOPE. This is the only therapy Hans has ever attempted that will actually train his immune system to attack the NB all by itself after the therapy ends. How I wish he wasn't going into this therapy at the lowest end of his weight range though, and in pain....

Thanks to everyone for keeping this kid in your thoughts and prayers.  He still has a lot of fight in him.  He is All-In for the next round of therapy.  He says he just wants to get it over with!  He has nothing but faith and hope in his team for and their care of him.   Thanks: to Gramma Kathy for the cool Ninjago above, thanks to Larisa for your expert Elle-care, thanks to Michelle for your special HEB Chicken Noodle Soup shipment.  Thanks for pooling together and keeping this little family afloat.  Thanks too, to my mom!  I called her in the middle of our "stupid week" and I told her I was nervous and that I thought I'd need her for our first week of Antibodies.  She bought her ticket last night.  She flies into LA on Sunday.  She'll hang out in LA and help us navigate the first week of that therapy.  Better go call the Ronald McDonald House...