Ivy's Updates

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

Thursday, November 13, 2008 1:31 PM PST

Juliet's napping in the swing (the "neglectomatic" as Pete calls it), so I have a few moments to update.

Unfortunately the ID doc put Ivy back on the micafungen, saying that it is at least not letting the aspergillus proliferate. I did not point out that it was kept in check all summer long with NO meds. The doc said that some people are on micafungen for YEARS! Not Ivy, we hope...when she finishes chemo in 6 weeks, that should speed things along.

Ivy did indeed get her vinblastine yesterday. She was quite listless yesterday but perked up later in the day. She threw up her methotrexate so we didn't even bother with the 6-mp. Her tummy is still sensitive and it seems any little thing can set off vomiting (though not prednisone, Oreos, or soy sausage--go figure).

Her liver enzymes are slightly elevated. Dr. G said this is from the tummy virus, not chemo (since Ivy's been off it for a week) and not the micafungen. They will recheck next week. Her hemoglobin was as high as it's ever been--13.2. ANC around 1300, I believe.

Dr. T is in talks with the surgeons; they are deciding whether a general surgeon or a plastic surgeon should cut out the lesion on Ivy's leg. I'll update when Ivy gets a surgery date. Otherwise we are fine here. Jasper has been playing soccer this fall and loving it. His last game is on Saturday.

Thanks for reading!

love Allyson, Pete, Jasper, Ivy and Juliet

Hospital Information:

Children's Hospital Oakland
747 52nd Street
Oakland, CA 94609

Links:

E-mail Author: allyson_hitt@yahoo.com