I met some of you at the ULF Conference, and wanted to give you an update about our son, Sam. Sam was diagnosed with ALL - Acute Lymphoblastic Leukemia November 13th.
We are home from the hospital after ten days there. He had a port placement and five chemo treatments during his stay. We return to Omaha Children's tomorrow for bloodwork, and on Friday for two more doses of chemo meds.
Sam is responding to the treatment well, but not without its side effects. He is really emotional, and likely experiencing some discomfort from his bone marrow aspirates, spinal taps, and surgery to insert the port. The oncologist said it is also very common for their behavior to exhibit like Sam's, going from happy to sad in a split second, from the medication he is taking.
November 19, 2002 was the day Sam was diagnosed with his Perixosomal Biogenesis Disorder. It isn't a good month for our family.
Please keep Sam in your thoughts, and hope for continued response to treatment without causing irreversible effects to our little guy.
Shannon Butalla
Lincoln, Nebraska
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Sam Butalla - another struggle
- By Samsmom
- Posted November 24, 2008 at 8:46 am · 4 replies
- In Zellweger spectrum
- Shared with the public
Explore topics in this discussion:
Leukodystrophies Chemotherapy Surgery Pain Leukemia Dexamethasone Cortef Methotrexate
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- By mm
- Posted April 30, 2009 at 10:15 am
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Hi Shannon,
I met you at the ULF conference. My daughter has CACH.
I've been thinking about you and Sam. I was wondering how Sam is doing? He is such a cutie!
You and your family are in my thoughts,
Margaret
- By Samsmom
- Posted April 30, 2009 at 11:21 am
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Hi Margaret!
Thanks for checking in. Sam is amidst his delayed intensification treatments... day 38 of 57. After delayed intensification, he'll be in maintenance, where he'll get chemo once a month in clinic and take daily oral chemotherapy medication (mercaptopurine and methotrexate once a week).
His adrenals have suffered from it all, but otherwise, he is doing ok. He now takes 5 mg of Cortef in the a.m. and 2.5 in the p.m. The high doses of dexamethasone really messed up his adrenal glands.
If you, or anyone else, wants to visit his carepage, I keep it up to date with Sam's latest news. It is www.carepages.com/carepages/sambutalla
Thanks for checking in! It is good to hear from you!
Shannon
- By Samsmom
- Posted April 30, 2009 at 11:23 am
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P.S. His maintenance chemo lasts until February 2012. It is a LONG treatment protocol, but at least their is treatment, unlike the crazy leukodystrophies many of us are dealing with personally or with a family member.
- By MBA28
- Posted May 1, 2009 at 11:21 am
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We are all with you; most of us having "been there" in one way or another. There is nothing worse than a parent having to endure such pain knowing we are virtually powerless over this disease except for those that might be amenable to BMT or some such procedure. Our collective hearts go out to you.
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