Oh Gosh - I'm tired - but I think I promised an update from yesterday and didn't get to it. Yesterday's visit was fine. Hans lost some weight - he weighed in at 11.2 kilos, but it makes sense to me. I think he was truly bloated with that last weigh-in of 12.0. At least 11.2 shows a general trend toward gaining a bit of weight - but not an unexpected amount. His counts are fabulous. His Hemoglobin is 12.7! The stem cells are fully functioning now. That's the highest I remember it since we've started this whole process. I found out my Hemoglobin is 12.8, so I think Hans is doing very well!
Good news first: the blood work they did on Friday showed absolutely no indication of tumor presence (they test for some salts, which are elevated when tumor is present and growing/dying in rapid cycles~probably a really poor version of the truth ~ but that's roughly how I understand it). They are going to start him on shots twice a day to get his diarrhea under control. Good news for me: Kevin is the shots guy. We'll probably start it tomorrow since the delivery hasn't arrived yet tonight.
So-So News: The urine sample he gave Friday was contaminated. We tried again and failed to get an adequate amount, so a urine sample is still pending. However, I guess since there is a question of what's going on with the bladder they wanted to do a STAT GFR or Kidney function test. They had me turn around and come back down this am at 8:30. I didn't handle this news so gracefully when I got it at 5pm yesterday. We had plans! But, thanks to Dana, Elle was able to stay in The Woodlands and go to Basketball Camp and hang out with Cole and baby Clay before and after. My dad always used to say, "Sometimes you need a favor from a friend". I hope there is no lifetime limit. Thanks to Carmen, too, who watched my kiddos yesterday while I spent some 'luxurious' time to myself... in the dentist's chair! UGH!
So, we have completed the GFR and will await the results. The prayer is for normal kidney function. Some of the chemos on this protocol can cause kidney damage, so we are aware of the risk. I hope they let us know the results soon. Hans was an amazingly good sport today! The test takes 5 hours and he had to have an IV inserted. I can't say how proud I was of my handsome little guy today. His hair is just starting to come in. It looks blond right now. His eyes somehow look bigger than they ever have. They change color everyday. They are pretty much a sea green, but can look grey or blue or green depending on what he's wearing.
TCH has a "Child Life" staff who helps explain things to kids and provide distraction. I must say that Breanna went above and beyond with us yesterday. She played I Spy with Hans for a long time, helped distract him through both a blood draw and a shot, and also helped me get a lot of information from both the pharmacist and the NP. Breanna- if you happen to read this - I think I would have lost it without you yesterday, thanks!
Sorry I'm rambling so. We have no appointments until Monday! We're actually really looking forward to the weekend. Roxie is coming out, and so is my cousin Joey. They're here to help celebrate Hans' big 4th Birthday! Then, Joey will escort Elle up to Seattle where she'll spend two weeks. My mom will fly her back down and stay a week.
That's "all" for now -
Lara
About Me
- 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.
7 comments:
Super hooray for all the good news and we'll hope the so-so news reconciles itself the way we like. Wishing you all lots of good cheer for a weekend of friends and family! Elle, safe travels to WA. Be sure to pack an extra magazine in case you are delayed in transit.
Much love,
Erin
Great news!
I'd say try to get another "luxurious" day off and spend it somewhere other than then dentists office. Kalene and Jessa went to the dentist today. Kalene's announcing that she didn't have any cavities, but that Jessa has one. Kalene said "what should we name it?". Oh ya, Jessa has to get reading glasses, too.
I hope you have a wonderful birthday weekend.
Hans - watch for a big box that should show up at your house on Saturday. I'll let you decide whether to open it a day before your 4th birthday!
Elle - I'm at Aunt Debbie's house for 3 weeks watching the dogs and cat while they're on vacation so I won't see you when you visit Grandma Kathy...darn! It sounds like she has some fun things planned for your visit!
Prayers and good thoughts for all of you.
Love, Aunt Holly
We are very happy for your good news! We will send Hans bday present in August after we get back from Europe. As Elle puts it, "Aunt Debbie is always late sending presents so it's like having 2 birthdays!" Elle, we have something for you too for your 1st Communion. See, it's like having 2 1st Communions!
We send all our love and are glad that Hans is doing so much better.
Love you bunches!
Aunt Debbie, Uncle Mark,Jessa and KK
y
Yippee! So glad to hear the good news! Praying the so-so results will resolve themselves quickly.Grandma Kathy is Sure lokking forward to your visit, Elle. I will make sure to drop by and see you. Love, Cindy
Thanks for updating. We still check daily! We are so excited that things are going so well. Call if you need anything.
Denise & Little Saints
Yea for Hans and the good news! We will keep you guys in our prayers re: the kidney tests. We hope you have a wonderful weekend!
Hi!
WHOO HOO regarding the great news!
SHOO away the so-so news...undoubtedly, Hans' little body is working hard to balance daily challenges. Tests often are misleading and unclear. I am so glad Hans has such a grand team of professionals to assist!
OH, ELLE...such an exciting time to come! Enjoy Washington...I will look forward to a full report, as well as a full report about your adventures with Cousin Erin!
HAPPY BIRTHDAY, HANS!!! My friends and I have a rule allowing us to celebrate our day a week before the actual date, as well as a week afterwards! PARTY ON!
Kevin...I will call soon so you and I can catch up...I love you!
Aunt Susy
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