Form long weekend to Long Day. I was doing my thing around the house this morning, after getting Elle onto the bus, and I thought - I better get up there and wake up Hans! I just didn't have a 'good' feeling. Well, he woke up for me, but instantly said 'I don't feel that good, I better go to the ER.' Oh, my baby! Kevin and I had been watching him - he has been struggling to eat and swallow with those new mouth sores. Ouchie! We start to worry about electrolytes.... and hypoglycemia...when Hans doesn't eat well.
Soooo.... we really lucked out by getting a bed in 'triage' at the clinic. This is really an ideal health care setting. It's one bay of about 8 private rooms. The Onc and nurse to patient ratio are great, everyone knows you, and everyone is dedicated to taking care of you carefully and quickly! So at least we had a good customer-service day. They peeked in his little mouth, and shook their heads. Yiikes. Mouth sores, bad, outta nowhere! I don't understand how Hans can be on this med for an entire year, and suddenly acquire mouthsores???? Anyway, his sodium was a little low, so he got fluids all day, and some special mouthwash with lydocaine. He is to take Tylenol with Coedine around the clock for now. They said it should take just a couple of days to heal. They also said our biggest concern is avoiding dehydration...so he has to chug drinks. Hans has lost a whole kilo (2.2 lbs) since he last got weighed! And... his ANC is at rock bottom, 60.
We got sent home this evening to drink lots of fluids, but we actually have a 'reservation' to come back and do the same thing all over again tomorrow. We can cancel it if Hans looks great in the AM, but it's nice to have that cozy spot booked just for us if we need it! I'm exhausted! Poor Hans is somehow managing to eat chicken tenders from his new favorite place...Popeye's. That's the scoop. In the here and now we just need to get his mouth healed, keep dosing him with mouthwash, tylenol and all his other meds. In the big picture... I start to get a little freaked...what does this mean? Will Hans get mouthsores on this med each round? Will his mouth recover quickly on its own? Will his ANC recover? Will we be able to stay on this med at full dose? Will we have to start dosing him with GSCF shots to boost his white blood count?
- 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.