Phoenix's point of view

I can't think of the words to write this. I can't even say it out loud really. Ethan and I haven't talked to anyone (besides our drs and my parents and BIL and SIL)... but Phoenix has cervical lymphadenopathy (lumps in his lymph nodes in his neck). Actually, he's had it for over 2 years and, in the last year, it has tripled in size. He's been referred to a specialist but, from everything we've discussed and studies, it's probable that he has cancer. What is really working in our favor is that he's had the lump for a long time with no other symptoms. But we also don't know what other symptoms could be manifesting like. For example, he's really small (26lbs 34½"), sure, he could just be small, or he could have something else going on. Also, because the lump has been there for a long time and that it has grown almost positively rules out lymphadenopathy due to colds or infections. Ethan and I are pretty scared but we can't get ahead of ourselves, he has an appt on May 1st with a specialist but we are trying to get him in sooner. I just wanted you all to know what was going on. With all this happening right now I'm having a really hard time focusing on anything else. 
I've had a bad day today but then I stepped back and looked at it from Phoenix's point of view... he's seeing an oncologist, going to a special ed play group where his favorite kid is leaving on Wed., his therapist wants him to have more therapy, and mom told him that he now has to eat all meals at the table and that there is no TV after 11A until after dinner but by the time he gets done picking at his food, it's bedtime. My poor little guy. I've had a bad day too though. You know how you imagine your life different than it turns out to be? That's what I'm experiencing today.

History

When Phoenix was 2 months old, I found a lump in his neck, under his right ear. It was tiny - slightly smaller than a "BB". Concerned, I had our pediatrician take a look at it at Phoenix's 4 month well-baby check up. 

"It's nothing - just a swollen lymph node, probably related to a cold virus," He told me. At the time, this answer was all I needed and it made me feel better. He let me know that the lymph node would go away eventually and may swell again if he ever got a cold. 

Months pasted and, though the node was still there, I had confidence in our pediatrician and assumed it was normal. Around Phoenix's first birthday our family moved and we saw a new pediatrician. At his one year well-baby, I brought the node to the new doctors attention. 

"Oh, it's just a lipoma," the doctor informed me. A fatty tumor which would not grow and wouldn't cause any complications. So, it's not a swollen lymph node - no wonder it's still there, I thought. Good, no reason to be concerned. 

Around this time was when other concerns were beginning to appear so the lump in Phoenix's neck took a back seat.

At 16 months, Phoenix started speech therapy. Regular sessions helped him use sign language and begin to make sounds other than the grunting he normally used. 

At 18 months, Phoenix was diagnosed with sensory processing disorder (SPD). And at 19 months, we heard Phoenix's first word - "hi". 

After that, Phoenix progressed quickly. Words came fast and, though we were bombarded with constant diaper rashes and sensory issues - speech was not a concern at all. 

September 2007 brought new changes into Phoenix's life. His baby sister Scarlett was born and we decided to see, yet another, pediatrician. At Phoenix's 2 year well-baby check, the new doctor took a look at Phoenix's lump. The once "BB" sized lump was now several little lumps.

"It probably is just a lipoma but it shouldn't grow," the doctor informed me. He was the first doctor to show even slight concern about Phoenix's lump. He told me that, if it grows, we'll look at it again. 

Near the end of November, the lump was starting to become visible through the skin. I started seeing it in pictures taken at the right angle and other people started asking what it was. Friends and family started noticing and told me I needed to take him to the doctor. So, we made an appointment for late March 2008 with, yet another, doctor.

Right away this new doctor was concerned. To quote her, she said, "It doesn't feel scary, but it is concerning." And she wanted Phoenix to see an Ear, Nose, and Throat Specialist. She told me the ENT was great and that he saw kids frequently. Soon after, I made an appointment with the ENT and took photos of Phoenix's lumps for our records (taken March 28th, 2008). 

Unfortunately, the ENT could not get us in for nearly 6 weeks! So we talked to a friend who got us in to see a pediatric oncologist in just 2 weeks.