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

Saturday, April 25, 2009 4:40 PM PDT

I have been working on this update for more than two days now. In this house the interruptions are constant!

Anyway, I waited until Ivy was finished with all three medical appointments this week before updating. So…Monday she had surgery to remove her port and now she is without a central line for the first time since March 2005! This is a huge milestone for us all, though Ivy seems a little ambivalent—she had anxiety about the surgery and also about the dressing removal, even though the stitches will dissolve by themselves. Not having the port means no more racing off to spend nine hours in the ER at Children’s just because Ivy has a fever—how many times have we done that? At least 10. Ivy also got to keep the port as a souvenir of her four years battling LCH. They sent it off to pathology, as they are required to do, but we were able to retrieve it yesterday. It’s a neat contraption and Ivy is pleased with it.

Then Tuesday she had her kindergarten checkup. To my surprise she is at the 25th percentile for both height and weight. It was quite some time ago that I stopped tracking that, just being comfortable that she was gaining slowly but surely. There was a long period of time where she didn’t even make the growth chart (in fact, Juliet seems to be on that path as well!). The only thing that didn’t go so well was the vision test. I think they were testing distance vision with some kind of machine and Ivy struggled with it. The nurse asked Ivy if she was tired (it was 5 pm) and I offered that she had had surgery the day before. The nurse threw up her hands and said, “Why didn’t he mention that?!” meaning the doctor. So maybe that’s relevant…? We’ve never had any indication that Ivy can’t see well, but now we’ll be watching, and perhaps retesting.

The other bad part of the kindy checkup is that by my calculations, Ivy will need 14 shots before she’s caught up on her vaccinations. I am not looking forward to that at all! She will start catching up in June, six months after her last chemo.

Then Wednesday we headed over to UCSF for a followup at the dermatology clinic. I’m sure UC deserves their stellar reputation from a medical perspective, but overall, there is a little to be desired in the care department. Very rushed and very clinical. And not very pediatric-minded, even though we saw pediatric dermatologists. Anyway, Ivy is still having eczema, though it’s much improved. We are instructed to moisturize, moisturize, moisturize and will be trying a new prescription shampoo.

We are all strong and healthy these days! Our lives as part of a family of five are busy and chaotic much of the time, but overall, good. I was able to join Jasper’s class for a field trip to the senior center yesterday—I had a great time, but finished the day exhausted! My hat is off to J’s teacher…what a remarkable job she does, day in and day out.

Jasper lost a tooth the same week Juliet gained one. Both are growing up! Juliet is seven months old and brings daily delight to all of us. Her smiles are contagious and she is very generous with them.

As you can see it’s hard to find the time to update, but fortunately, updates aren’t necessary too often anymore. Thank you, as always, for continuing to check in here!

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

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