FearlessFilipina

Haha, if only I could carry a child in the upper left quadrant of my abdomen.

My major is Law & Society, and my minor is forensic science. I wanted to go to law school, but I have many reasons not to go at this point.

I was definitely not too happy with my care this time around. Actually, I went to my university's clinic, had a blood test, urinalysis, and X-Ray in March. They wrote it off as scar tissue and constipation. Two months later, I ended up in the ER to find that it was the same tumor I had before. Then, it took another 2 months since we found it in the ER to the time the oncologists decided what to do with it, unsure if they should just do surgery or treatment. It grew about an inch between May and July, so I imagine it grew about two inches since I was seen in March to July. I started treatment to shrink the tumor in July, but it has since kept growing. Now, my doctor's office is so kind and caring. They know me by name even though I've only been there a handful of times. It's probably because I am the youngest patient by about 50 years.

It is actually not as painful as it looks like it would be. The worst problems I have with it are with my stomach. I haven't been able to eat as much as I should since my stomach is getting pushed upward and squished by the tumor. It also tends to press on my ribs when I slouch, so my posture has been great these past couple months.

Thank you very much for learning about these tumors. It is hard to come by much accurate information about them as mine has been slightly different from what many doctors and websites say about it. My first tumor was donated to research though!

Hi everyone. I would edit, but I can't on mobile! I am going in for the nephrostomy and stint in my vena cava now, but I will be back to answer all my questions once I get to my room in the hospital. I will be under 23 hr observation.

Here are a few interesting things about me that might generate more questions:

• I had a wish granted by the Indiana Children's Wish Fund.

• I have had 10 surgeries.

• My belly button was redone by a surgeon.

Thanks so much for the questions. I will be back after my procedures!

It is funny because my doctors kept saying "Oh this tumor is slow growing." And after it grew an inch in 2 months, they said that it's hard to make generalizations about this kind of tumor since there are not enough cases to study.

Thank you very much. I had the colostomy for a year and two months while I was in 8th grade, and it was reversed right after the first tumor was removed. Many people who need to have a colostomy have it permanently, but mine was temporary because my large intestine was accidentally cut during my biopsy and needed time to heal without interruption.

My remaining kidney is currently starting to retain fluid because this tumor is putting so much pressure on the ureter at the moment. I am going to the hospital tomorrow for a procedure called a nephrostomy, a tube inserted into the kidney that will help drain that fluid out. From what I understand, the tube will drain into a little bag outside my body, kind of like a really direct catheter. I am supposed to have that for a few days until we decide what to do next.

My pediatric oncologist who treated me when I was younger said the recurrence rate for this type of tumor is 30%. Its cause is basically unknown because there are so few cases to study.

I am not sure how similar it is to neurofibromas. Fibromatosis/desmoid tumors usually either grow from a muscle wall or bone and don't do much to nerves, in my experience.

Thanks for the questions :)