The Mucositis has finally hit! It's actually pretty heartbreaking. Hans is now just completely wiped out and sleeping most of the day. He has a lowgrade fever of about 99.0 - 100.0, which is normal at his stage in treatment, and his mouth is completely full of mucous. He has a continuous morphine drip, and also the self control feature. We are supposed to clean his mouth out four times a day, and it seems like it is just going to get harder and harder to get him to cooperate with us as it starts to hurt.
Today the doctor said he still thinks Hans looks pretty good, all things considered. It's just a "brutal" protocol that these kids have to go through. From what I've read researchers are looking into medications that would combat the mucositis, but it isn't standard treatment protocol yet.
Hans got platelets yesterday and he'll get Red Blood Cells today. Today his ANC was 1.
On a lighter note...My mom has been making Hans the coolest shirts! When he switched from the central line to the PIC line, he couldn't even take a shirt on and off without being unhooked from the IV. During the 4 straight day Chemo the nurses hated to unhook him. So, my mom has made about a dozen white t-shirts that open with velcro tabs under the arm. The nurses were totally excited that they never have to unhook him now. I'm happy that they work and match with everything. (He mostly wears PJ's in the hospital.)
Elle just had her last soccer game today. She just called me to say she got to play forward in two quarters and scored a goal in the first. Go Cheetahs! I went home last night to see our new carpet. It looks great. We put it in b/c it was recommended in the Bone Marrow Treatment Protocol. Hans will have such a nice cozy home to come back to. Can't wait!
I feel so strange leaving the hospital without Hans, but I know that Kevin takes good care of him. I got back the other day and the nurse was commenting on what a sweet and caring daddy Kevin has been through all this...
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.
4 comments:
Hi, so sorry to hear how hard things are today. Hans has been through so much,he sure is a strong boy. I know it's hard for all of you during this time. I'm praying the yukies go away soon and Hans starts feeling much better. Praying for you always. Love, Cindy
We want you to know that we are thinking of you during this difficult time. We hope that it goes by quickly for all of you and that Hans remains strong. He is such a great kid!! As always you are in our prayers. God Bless!
Love, Denise and Little Saints
Dear Lara and Kevin,
Yeah for Grandma Stephanie! It's wonderful to be able to make our little guy more comfortable amidst this tough stage. Perhaps she should market the shirts for other little guys and gals!?
As we all read your daily messages, we admire and are amazed at your strengths! The love simply shines through and through!
Love and hugs for Hansie, Ellie, and YOU!
Aunt Susy
Hans and Elle have two awesome parents. Praying that this phase of recovery passes very quickly for all of you. Strength, love, and prayers to you all.
Love, Aunt Holly & Uncle Michael
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