Sunday, March 11, 2012

Relapse is confirmed!

When you have multiple kids, you are told as parents that each kid is different. Even as newborn babies, the personalities are quickly noticeable and different. One of Jonathan's characteristics is that he has always been a kid who does not seem to focus on the long-term. When we were driving back from Disneyland and we told the kids that it looks like Jonathan's cancer came back, Jonathan was more interested in going back to his game, while Arielle's silence was noticeable. In some regards, Jonathan's innocence and "head in the clouds" type of personality is an advantage, but sometimes we worry about whether he is prepared enough for the upcoming weeks and months.

Recovery Room after Biopsy
Last week Wednesday (03/07) we met with Jonathan's oncologist and she confirmed the results of the biopsy and the scans indicate that Jonathan's Neuroblastoma has return. The confusing thing about Jonathan's relapse is the length of time that has passed - 5 years - before the tumor came back. What is doubly confusing is the places that the tumor has chosen to come back in as well. So far, it seems that is it only solid tumor that has return, i.e. there does not seem to be tumor in his bone marrow. Although we were originally treating this as slightly positive news, it turns out that if the tumor has come back in multiple sites, and these sites do not include the original site, then the fact that it is not in his bone marrow is somewhat irrelevant. The tumor has metastasize and this is cause for concern.

Most of the tumor detected is very small - averaging between 2 to 3 cm by 2 cm in size (yes the hospital always uses metric and not SI as their scale of measurement). In the neck area, there are multiple lymph nodes detected with the smallest being 1.4 cm by 1.4 cm and the largest being 1.5 cm by 2.7 cm. These clusters of lymph nodes together measure about 4 cm by 4 cm on visual inspection. Think of it like a bunch of grapes growing together. In the soft tissue adjacent to the spine, the size is 2.4 by 1.5 by 4.4 cm. There is also another spot by his liver and although it's tricky to tell whether it really is a site for tumor given the other two spots, we're going to assume it is and not bother to do surgery for a biopsy.

Now that we know that Jonathan's relapse has been confirmed, the rollercoaster ride begins.

2 comments:

Anonymous said...

I recently met your wife in the waiting room at LPCH. My daughter also has Neuroblastoma. Please pass my email along to your wife if she'd like to have it.

Praying for your son and your family.

Summer Carmack
summercarmack@yahoo.com

Anonymous said...

I recently met your wife in the waiting room at LPCH. My daughter also has Neuroblastoma. Please pass my email along to your wife if she'd like to have it.

Praying for your son and your family.

Summer Carmack
summercarmack@yahoo.com