Sunday, February 22, 2009

Tumor Wars: Klaus Strikes Back -Plexiform Fibrohystiocytic Tumor or Neurothekeoma

I started the blog to keep family and friends informed. We've made some new friends along the way and have had many helping hands hold us and guide us in this crazy journey.

A few days ago I was contacted via this very blog by a couple in Boulder, Colorado. Interesting coincidence- me being a Buff grad and all. I hand Phil the message - huh small world he says as he looks down at his CU shirt and matching shorts. Their 5 year old son may have a fibrohistiocytic tumor (like the one in Lil's leg) but it may be a neurothekeoma. I assume that they are in the beginning of their journey and are awaiting diagnosis. That place sucks. I'm not sure I have the energy to be supportive, I don't know much about that tumor as Lily's was grossly overshadowed by the massive tumor in her belly.

I get to thinking, and the good old Catholic guilt settles in. Wasn't I just sitting in front of the computer a week ago searching for a happy ending to any of the adrenocortical carcinoma stories I had read? There's got to be more... it's unfair not to respond.

I make the call. And 20 minutes later I hang up and am back online redoing a couple of searches I hadn't looked at in months to see if I could help a new friend, who has already been on this journey for years- and still awaiting a final diagnosis. In January 2007, 3 year old Klaus's dentist noticed a 1.5 cm lesion on his gumline. He reccommended having it looked at by a surgeon. 3 months later the mass was removed and the pathology came back mixed. It could either be a cellular neurothekeoma or Plexiform Fibrohistiocytic lesion. Conflicting diagnoses come in from multiple pathologists. All follow up indicates the tumor is gone. By December 2007, there is yet another suspicious growth at the original site, it is excised. Months later there are swollen lymph nodes and a referral to Oncology. There is waiting, watching, worrying. Klaus' mom and dad start looking into second opinions, third opinions, fourth opinions or for someone who has any insight as to what's going on and how they should proceed. Klaus' mom, Tracy starts a routine of checking his lymphnodes and mouth for any changes. By January this year, Tracy notices another bump by where Klaus' original tumor was. The nodes are questionable too. The scans begin again, the waiting, the worrying. No one knows the best plan. Aggressive surgery to remove part of the bone in his jaw and surrounding lymph nodes is an option, but is it the best option? The family has travelled to St. Jude's, Johns Hopkins, and Beth Israel Medical Center to try and find answers. And then they found Lily's blog and mention of a similar tumor. They are looking for someone who has experience with this and the best way to help their son. So I offered to add a blog for them. If anyone has information that could help them, please contact them via email @


  1. Jenn,

    You so kind and funny too! Thank you!

  2. My Mum who was experiencing weight gain, hair loss and acne, bouts of chest and abdominal pain and several months of unrelenting headaches that no medicine could relieve, In fact, it got worse. saw various doctors they decided that the lab levels indicated nothing much at all, until we met a Doc. who did CT scan, and she was diagnosed with adrenocortical carcinoma. So after one year, A surgeon advice was to remove her tumor, along with her left kidney. she needed to see someone with extensive experience in treating adrenal gland tumors for the next phase of her treatment. Knowing she needed to get an answer once and for all, we looked up on the internet and saw someone who testified about Aryan herbal medicine which she took and she had no more symptoms since then. You can also contact him if interested at


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)