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6/15/04 - Ivy Kathleen is born, full-term and healthy
9/04 - unusual rash appears in groin area
10/04 - referral to dermatologist, who misdiagnoses it as molluscum
12/04 - bloody, mucousy diarrhea begins; rash has spread all over torso, includes horrible raw diaper rash, cradle cap; Ivy is losing weight
1/30/05 - dermatologist biopsies for "histiocytosis," "very rare, just need to rule it out."
2/8/05 - diagnosis of Langerhans cell histiocytosis; we are devastated
2/9/05 - meet Dr. Joe Torkildson at Children's Hospital Oakland for the first time; he is reassuring, inspires confidence
2/05 - topical steroids are prescribed for Ivy's rash; no effect whatsoever
3/17/05 - Ivy has EGD/colonoscopy to confirm LCH of the GI tract (long delay between diagnosis and procedure due to respiratory illness--no anesthesia allowed); multiple biopsies confirm extensive involvement
3/30/05 - Broviac is placed and Ivy has her very first chemo treatment and dose of prednisone; very quickly responds to treatment--we are overjoyed! This is a very good prognostic indicator!
5/05 - Flex sigmoidoscopy indicates that LCH in GI tract is "95% gone." Continue with six additional weeks of treatment
6/15/05 - Ivy turns one! Begins maintenance therapy a week later
7/05 - Ivy relapses
7/05-9/05 - Ivy is treated with three cycles of 2-Cda; she gets sicker and sicker
9/05 - Ivy begins experiencing tachypnea (rapid, shallow breathing); CT indicates something weird; bronchoscopy returns no definitive results
9/05 - Ivy is put back on LCH III protocol; again, responds almost immediately
10/05 - CT indicates weird thing in lung is gone
12/05 - Ivy begins maintenance therapy again; this time, no 6-mp, instead will use methotrexate, using protocol developed by Children's Oncology Group
1/06 - Methotrexate is hard on Ivy's bloodcounts--she requires a transfusion, also is neutropenic
1/06-3/06 - Ivy is on TPN (IV nutrition)
6/15/06 - Ivy turns two
12/13/06 - Ivy completes treatment! Now, we wait and see...
Journal
Tuesday, September 15, 2009 9:06 PM PDT Anybody still checking in...? First a quick update about Ivy--she is doing GREAT!!! She started kindergarten two weeks ago and loves it. Healthwise, she is fine. We now go to clinic every two months. They can't find a thing wrong with her! She's getting caught up on immunizations and is pretty brave about it. Jasper and Juliet are in fine form too. Juliet will be one next week and her brother and sister still adore her.
Also, I'm putting the word out about Hike for a Cure. We skipped it last year, due to Juliet's birth, but we are planning to be there this time! We're getting a late start with fundraising, but it's never too late to donate!
Without the little bit of research from past years, we are pretty certain that Ivy would not be with us. Even 20 years ago, they didn't know enough about treatment options for her refractory disease. Remember, histio gets no government funding for research--it's completely up to families and friends (like you and me) to get that research funded.
Thank you. Here's an easy online way to donate: http://www.histio.org/2009hike4acure/ivy
love Allyson, Pete, Jasper, Ivy and Juliet
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