Hi again -
Two posts in one day, wow, when I've been such a posting slacker...
Just wanted to let you know that Hans is tolerating this whole deal fairly well. They have had him on IV Versed since this morning. This helps him stay relaxed and it generally just takes the edge off... It helps him to deal with the Foley catheter and the isolation (we can't love on him and hold him and snuggle with him like usual for about 7 days...) The MIBG went in today over a two-hour infusion. Hans 'radiation level' has to get to a '7' to be discharged. Today, after the infusion he was at a 24. I'm not sure when but they have told us that he could be expected to be out as early as Thursday, or as late as Monday. In the meantime, it's nice that this hospital stay has coincided well with the DVD release of the summer kid blockbusters. Yesterday we bought him Wall-E, Today, Kung-Fu Panda, so we're keeping him interested. Hepped up on versed he isn't doing too much else.
And, even though it isn't our first place to spend the Thanksgiving Holiday, we're quite well fed around here. There is no shortage of food on a children's cancer floor over the holiday. We are fortunate that Elle and Kevin are able to miss so little work and school and that we can all be together. It's also nice that Elle has Grandma Stephanie here to hang with. Elle can't come into the room these days. But, she can sit in the hall, play bingo, cards, etc. I'm sure we'll get in some sight seeing too, eventually.
The rest of our stay looks like this:
Daily infusions of Irinotecan with weekends off.
Monday we'll do another IV push of Vincristine. (Kevin and Elle fly home, me, Hans and Grandma stick around.)
Mon-Fri next week we'll do outpatient Irinotecan.
The following Monday we'll do a stem cell infusion (if necessary) with cells that they have left over from Hans' stem cell harvest 2 years ago.
Weds the 10th we'll do an office visit and all three of us should head out.
We'll also squeeze in one or two MIBG scans before we leave. I'm not sure if these are so much diagnostic, as they are evaluative that the procedure has done the right thing...
That's the scoop. More later.
Love, 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:
Wow you are certainly in for the long haul there, but it sounds like it is going as well as can go! My love to you all, and I hope that at least Elle and Grandma Stephanie can explore downtown a little. Philadelphia during the holidays is really very pretty.
Erin xx
Hi There!
I have been waiting for an update.
I called Grandma Step when she was boarding her plane on the 2nd leg of her journey. I'm so glad you made it safely and have began the chop journey. I'm also so Happy all of you are together!
My famlily sends thier blessings to all of you. I'm so happy that Kung Fu Panda and Wall-e is there to carry through!
Pat & Shinichi
Hello!
It is comforting to know that the initial phase of Hans' therapy program has been completed, and he is now working towards future HUGS!
Holiday time in the BIG city is fun, and I do hope Elle and Grandma Stephanie can take in some of the festivities!
Love and hugs,
Aunt Susy
Our thoughts and prayers are with you all! Glad you can all be there together to get this done. And, glad Elle has a Grandma to hang out with :)
Love, hugs and prayers
Aunt Holly and Uncle Michael
Let's hope that Hans' days in isolation pass quickly. He needs those hugs and loves!
CHOP also has e-cards on their home page. I found it under the Quick Links section. They had quite an array of cards to choose from and I'm sure Hans would enjoy the mail while he is inpatient.
Loves and Hugs to all of you,
G.Kathy & G.Dale xoxo
Thinking of you all every day, and thankful that you have this opportunity for such great medical care, and can be together for Thanksgiving. Know that you have our love and support, and that we are cheering for the best possible outcome for Hans!
Love,
Kim
What a way to spend Thanksgiving! It all sounds intense, but I know Hans will sail right through it. He's such a trooper! Even though I am no longer at TCH, I still think about Hans everyday. I have the picture of him unwrapping his bday present right in front of me in my cubicle at the new job. The word cubicle gives me chills. It definately needs some time to get used to. Thanks for the update! Tell Hans I said hello and Happy Turkey Day! You guys have a good one and stay safe! Hope to see you when you get back in Houston.
Nurse Natalie
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