Well, not too much has been happening in terms of side effects. In fact, Hans is doing and looking fabulously! I'm pretty happy about that. He lost all of his hair last week and is bald now. But, I do say, quite beautiful. Without all that hair, I am enjoying seeing, kissing, loving the gorgeous face on that boy. Counts today, big meeting with school tomorrow, scans in Philly in two weeks. I think we are cruising along.
We have reached a couple of milestones. Hans is pushing himself on the swing now! It's such a sweet milestone of childhood. He was inspired by one of our friends, fellow Kindergartner, Kira, who he noticed that last week at the park was pushing herself really well. He's been working on it since MLK Day, and he's got it down.
The other milestone - Hans' has now reached the point where he has been in treatment for exactly half of his life. He was diagnosed at age three years three months, on 10/25/06, and now he's six and a half, yesterday was 1/25/10. This makes me a little sad. Sad that my pre-diagnosis memories are there, but some are fading, and we don't get to make any new ones. I'll always have some sadness and grief those are just two big facts that he doesn't get to be the Hans he was all set to be before diagnosis. He has suffered many not-so-fun side effects from his non-stop three plus year battle. And yet, I have to feel so proud of him and how he handles all of this. He is the happiest kid. He has never once complained of something he has to miss out on. He'll almost never complain of the procedures he has to go through. And, he's got the LOVE thing down. This kids tells us all the time how much he loves us. He wraps his arms around me and kisses me all over my head saying "I can't stop loving you!" I say, "I don't think I could love you any more!" He is just as affectionate with his daddy. He actually loves him even more unconditionally. With me - Hans has laid some funny ground rules. We are together all the time - so this is the deal - when I'm still in my jammies, he loves me, cuddles, etc. etc. - but once I'm all dressed. No more snuggles! Same rules apply to Elle, but she has to be wearing some special jammies that he bought her for Christmas, or no love! He's a trip.
The other way I need to spin this is that after all this time and treatment, we still have him. And, although it is not fun to fight this battle, we can and will continue to do it as long as we can, and hopefully we can somehow lay the beast to rest. We are fortunate to be fighting a version of this disease in Hans that is as responsive to therapy as it is. We only hope and pray that we continue to make the best choices in his treatment to try to save him. There are so many choices once you hit relapsed NB - there are no right/wrong answers.
Thanks for coming along this journey - especially for those of you who can still believe and have hope that we'll come out okay. Thanks to those of you who have helped us in one million little ways. We'll need you for a long way out. There is no way to do this alone! We have to keep the hope alive. That is our only choice.
Every day is an adventure. Every day is a gift.
- 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.