Stem Cells on Board

Hans is here at CHLA, where we were happily reunited with our Home Team of Dr. Marachelian and our cool NP, Deb!
We got stem cells. This is how it works, draw labs (bad news - plts less than 5, HGB 7.2, and NO ANC). Can we say saved by the stem cells?!? This is on cue, just in the nick of time!!! We then got 2 hrs of prehydration and premedications for possible reactions including Benadryl, Tylenol and Hydrocortisone. Then, the two bags of stem cells infused in less than thirty minutes. We still have two or three little bags of stem cells in the bank. Enough for one more rescue, which we may even use in a couple of weeks if this dose doesn't do the trick. We are currently getting platelets and will get packed red blood cells next! Great timing - we would have had to have been here for four hours of post hydration after stem cells anyway. So perfect. I try to remember to THANK blood donors out there in the world! I know not all of us CAN donate...but I would like to thank those that can and do. It is a life saving gift that cannot otherwise be replicated.

We got some ALK news today. Hans is NEGATIVE for the ALK expression. ALK is a gene mutation or expression present in some small percentage of NB tumors. To have learned that Hans is negative for this expression informs us that the ALK-inhibitor is not likely to be a good clinical trial for Hans to attempt. I am actually not at all surprised. We never had the opportunity to test his tumor for this expression until the lymph nodes popped up with disease this past Fall. In the past, we almost enrolled him on the ALK inhibitor trial on two different occasions. Now, it seems like a great cosmic blessing to me that the trials were closed to us back in December of 2009, and in July of 2011. Who knows what course Hans' disease might have taken had we put him on that trial on either of those occasions. Back in 12/09 we walked into our OV with Dr. Maris planning to enroll him on the ALK trial on a Wednesday. The trial was mysteriously closed that day. We wound up on the MLN-8237 trial for 18 months/25 rounds of good quality of life and stable disease. I remember Dr. Maris saying, as he told us the ALK Trial was closed that day, "Sometimes things like this happen for a reason." That comment really struck me. That's what mommies say! To hear it from one of NB's most prominent research/practioners blew me away.
Then, in July of 2011 Hans progressed in the skull and we had to take him off the MLN-8237. The ALK trial was our first choice, but once again the trial mysteriously wouldn't open. We were sent home to CA with the thought of returning to start the trial the following week. That progression wound up being rapid and dangerous. I shudder to think of what might have happened to him had we put him on the 'wrong' trial.

My heart is full of gratitude for all of you who've helped us get right here. You helped us get through three grueling rounds of ICE chemotherapy and then that rough stem cell harvest, and through those tedious MIBG therapies. And now, today, I feel like Hans can begin to truly recover. It's all such a mysterious miracle to me. Thanks for being there in thought and prayer, in kindness and support, thanks for stepping up to be a part of our miracle in the ways that you have.

Now we will have a few weeks to heal up, lick our wounds and recuperate. Then, we will scan to see whether or not there really is any disease left. There may still be a little! Even if there is NO diesease we will do something to treat this tumor to help prevent another relapse. We might just be in what my dad would call a "delicious dilemma." Having no tumor to treat closes off quite a few treatment options, but then you have no tumor to treat!!! I am jumping way ahead of myself. The Rx for the next month is R&R, school, spring break, twice weekly counts, and a breather. We will address scans and treatment options when they roll around. We are in good hands with our home team here, and now UCSF and CHOP are both familiar with our boy and stand at the ready to consult.

I will post after hearing of Thursday's labs.

Thanks for checking up on us!