Jarom

On Monday the 4^th Jarom had 2 more biopsies taken from his back.

These biopsy’s were sent to a dermatolopathologist here.

On Wednesday we met with a pediatric surgeon about removing the

2 initial bumps. Surgery was set for the 18^th but I changed it to the 26^th to give us more time to figure this out and avoid surgery.

The pathologist here could tell it was some type of condition, but sent it off to a dermatolopathologist at Sloan-Kettering in NY to narrow it down.

His dr decided to try to treat him for PLEVA (she thought it looked most like this), which is one condition it might be, with an antibiotic.

Jarom was sick for hours after taking the antibiotic so that didn’t work.

We had another appt with the dr on Monday to remove stitches. She was going to prescribe another antibiotic but decided to call New York first.

The pathologist has diagnosis it as Lymphomatoid papulosis or LyP.

She made him an appt to see a Pediatric dermatologist at UNM on Wednesday.

Here’s what I know about LyP:

It’s rare. About 1 in 1,000,000.

It is a disease of the immune system.

It causes papules (sometimes a few, sometimes hundreds).

Crops of legions may come and go for decades.

There is no cure but some treatments may help the spots heal faster or suppress new ones.

It is benign in that it heals it’s self, but it is made of cancer cells.
Many people with this condition are diagnosed with cancer and undergo chemo and radiation before they are properly diagnosed.

His dr. said some dr.’s believe it’s no big deal. Others think the patient should have bi-annual check ups. It increases your chance of getting lymphoma.

She believes we should take a more aggressive approach because of his age. (The longer you have it the higher risk you have of developing lymphoma. Although, the longer you live the higher risk you have of getting cancer anyway.)

She said if it was her child she’d have him seem at a clinic out east or in California. Jarom said he’d happily go to California. We’ll see what the dr. say’s on Wednesday before Jarom packs his bag.

Unfortunately Jarom may have to accept his spots or he may have to live in jeans and long-sleeve shirts all year long. Luckily the worst ones are on his legs and he’s ok with skipping shorts.