So I am finally sitting down to more fully update you on our trip. It was once again, a crazy week in our lives! But, I just read back over September of last year, and thank goodness, it didn't hold a candle to that month! We ended up all getting some version of that bug that Elle got. It's funny, but Hans remains so stoic with his pain experiences, that it wasn't until Kevin and I started getting symptoms of our own that we put two and two together and realized that Hans had just gone through it all on his own. We were up and back in two days. We did something a little different this time, we stayed right in Center City at the Doubletree - it was pretty sweet with a pool and a view of City Hall and the Avenue of the Arts. We had enough time to have a festive night out to the restaurant El Vez (chips and salsa for Hans), and then a quick cruise along the Avenue of the Arts, and a dip in the pool and the hot tub.
The next morning I started getting those stomach symptoms. And the general misery made the waiting for MIBG scan and results all the more excruciating. I just kept thinking - I have to keep it together, because if I just start crying - I'm not going to stop. It's really a crazy situation to have your child scanned for tumors every three months. You have to find out, all over again, "Does my child have cancer?" So, to come out on the light side of that response is pretty incredible and uplifting. We sure do feel that we have done the right thing in coming to CHOP. The team there is so dedicated to beating this disease, and the mysterious combination of the characteristics of Hans' tumor, and the team's expertise have all just fallen into place. Hans has an undeniable connection with Dr. Maris. It might just be a guy thing, but I suspect there is something deeper happening here.
When we arrived at CHOP in the cab, with all of our bags, fresh off the plane, we make this big turn and suddenly the hospital comes into view up on a hill - it says "Children's Hospital of Pennsylvania - Hope Lives Here". It blows me away. Because, for us, for Hans, for his specific tumor, for our situation and our family, it worked. It was the right thing to do. Despite the fact that we have travelled there so frequently (7 times in the past 12 months), and the expense and upset to general family life is great, it worked. We have always had HOPE, but we feel we have put our HOPE into the right hands. We are ever so grateful and humbled and once again we come away with the feeling of Mercy. We are so thankful for this glorious time. There are absolutely no guarantees with this ugly disease. We just have to take one day at a time, just like everyone is supposed to do. But, isn't it just the hardest thing in the world not to plan and dream and hope away for the future! And of course we do, it's just that our future has this horrible black question mark that gets put into check every three months with scans in Philadelphia.
Now - we get to forge ahead with normal life...soccer, beading parties, Kindergarten, (Hans' separation anxiety has been making it the transition from home to school very tricky, tho) home repairs we're catching up on - (I swear we fell three years behind on our place) and regular stuff... and in probably about 6 to 8 weeks we'll start to feel the fear and anxiety sliding back into to our lives as the next scans approach, but, for now, we get a free pass to continue life as usual without any treatment change-ups.
Hans is a one heck of a little Kindergartener - with his Frequent Flyer Card and his NFL wheelie back pack, he can handle any airport like a business traveler! Kevin and I are so proud of him. And, needless to say, we're proud of our pretty girl Elle, who celebrated her 11th birthday Friday! She handled us leaving her, with a big change up in plans at the very last minute, with courage and grace.
One more thing... Thanks again to everyone who has made these trips easy for us... the Sparrow Clubs, and all of you who have donated miles. Most families wouldn't be able to do this all on their own, and we are grateful to everyone who has made traveling for Hans' treatments possible.
Sorry for such a long post!
- 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.