Hans is still at home, hanging in there. Yay! His HGB was 12.8, ANC 640 and plts 35 when we were at clinic Wednesday. He is getting "hot hands" which is sometimes I think the first sign of a fever, but sometimes not! We are crossing our fingers and hoping and praying we get away with a full Halloween Weekend at home! He is trying to eat, eat, eat and pack on some of the five plus pounds he lost during his last inpatient stint. It's a little tricky with one big mouth sore from the chemo:(
So the onc went over the next two weeks with me. We are going to "try" to collect stem cells next week. This is a big deal. We harvested stem cells back in November of 2006, but haven't attempted them since. (Stem cell harvest works best after some pretty hard chemotherapy agents.) We have one small bag of stem cells left, but it's not really enough for a full rescue. When kids get a hard core therapy such as MIBG or really high dose chemo, they sometimes need their own cells back as a rescue. If kids don't have stem cells in the bank they aren't eligible for certain treatments. Stem cells are liquid gold. They give these kids options. So, we want to collect the cells for possible future use! We are going to start injections of Neupogen shots all weekend and then we'll start going to CHLA on Tuesday. This is how it works. You go in EARLY each morning, like 6 or 7am, under the presumption that you could be going into surgery each day. The first thing they do is check his labs. He has to have an indicator that his stem cells are mobilizing - the CD34 number we are looking for is at least 7 to 10. Our Doc isn't at all certain Hans' cells are going to get there - due to the total amount of treatment he has seen over the past 5 years. If the number is too low on Tuesday, we'll go up to clinic and get a special injection of a medication called Mozobil. I think this is a new cell growth stimulant. We keep coming back each day until we hit the magic number of 7 to 10.
If/when we hit it, we go into surgery and have a pherisis placed in his groin/thigh. This is a special (big) line for the stem cell harvest. Then - it's up to the day hospital where his blood is filtered through a special machine and stem cells are magically filtered out, and the rest of his blood goes back to him. Kids also usually get a blood transfusion, they get Calcium and are at risk for Potassium dips. If we get enough cells on day one, we are done and the line comes out, if not, we are back the next day for more, and maybe the day after that... This is a rough, rough process. I talked to a mom back in Texas who had the opportunity to donate stem cells to her daughter (a different diagnosis) and she described it from her perspective. She said, it's awful. You just cry. You don't know why you are crying but you just cry. It is just that draining and exhausting.
That's what we're hoping for, it can go wrong at every step of the way... even if we go in and try to collect, we may not get enough cells for even one rescue. BUT, our wonderful doc says she has a good feeling about it. We will try. And I love her even more for trying! She did say that if it doesn't work this time, there won't really be a reason to try it again later.
Then, the following Wednesday we'll get a quick CT of the neck and have a meeting after. If the lymph nodes are stable or smaller (and if Hans makes counts), we'll do another round of ICE, if not, it's back to the drawing board. That's as far as we've got mapped out.
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of that growing number!!!
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.