My worries

Over a week ago, Phoenix tripped and fell and he still has a slight limp from it. The other night he seemed to have a sty on his eyelid. Then he got a mild cold. I know all of these things can be explained but, my mind wonders and I worry. You hear about people who have cancer and their only symptom was a mild cold that just wouldn't go away or an injury that just never felt better. Then, they go in to the doctor to get it looked at and they find out the have cancer. I worry that any little infection could be a sign that he has cancer and that it has spread. 5 more days until surgery. And then another 5 to go crazy waiting for results. I can't wait until this is all over. 

My how you've grown...

A little over 5 weeks has passed since the last pictures were taken:

  

Original pictures here.

Vent

I am tired of everyone telling me how strong I am and how "if it was my kid I'd be a wreck" or "I'd be crying all day". The truth is, I'm no stronger than anyone else and they would act the same as I have in a similar situation. If your child is sick, you can't fall to pieces - you have to go on with life and be as normal as you can be - for your child. I don't feel strong either. I cry, I worry - hell, my jaw is KILLING me because I've had a clenched jaw for 5 days. I want to talk about it to everyone but, at the same time - what is there to even talk about? We don't know anything yet and, no matter what, he's still having surgery. This could still be a whole-lot-a nothing and I'll be thanking the stars when those lumps are GONE!

ENT

Today we met with the ENT. Right off I was in a bad mood. The receptionists were super bitchy and I was about ready to yell at one of them. We were a little late for our appointment and they seemed to really frown upon that. Oh well, screw them. We were taken back to a exam room when the Doctor came in to check Phoenix out. He fully admitted that he thought this would be nothing - until he felt the lumps. When he came in he was cheerful and happy. We gave him the history, what the other doctors have said, what we think, why we're concerned, etc. As he felt Phoenix's lumps, his face grew more and more serious and you could see that he was no longer cheerful. While he was measuring the largest of the lumps he turned to me and told me that the lumps were not lipomas - he said he was more than 95% sure of that. I felt like I was in a movie and he wheeled back to his desk, took a deep sigh and explained that we had a few choices: we could wait and see if they grow more, but he didn't advice that... we could do a needle biopsy which could tell us what the lumps aren't but it wouldn't rule out Hodgkin's and that's what he was concerned about. Hodgkin's. Our doctor was concerned about the very real possibility that Phoenix has cancer.  Our third option was the option the doctor wanted us to take - we schedule a biopsy. - so we did. Phoenix will be going in for a short, 45 minute, surgery on the morning of the 15th. We are unclear about if all 4 lumps are being removed or just a piece of one. I am thinking they'll grab was is easily accessible and then wait for the results of the biopsy before they plan anything further. The ENT told us that, because the masses are solid and hard, that this was not simply enlarged lymph nodes and, because there are no other symptoms, like redness or fever, that they are not cysts. By the time we left I felt close to tears and everyone in the office was treating us very different than how they were when we first arrived. The once rude and bitchy receptionists, stood at the counter smiling as we walked out. The nurse gave us a direct line to call if we have any concerns. Even though the surgery seems like it was scheduled in 2 weeks, the office only does surgeries every Thursday, so, getting in on the 15th was basically like getting in day after tomorrow. And, if you consider that it took nearly 6 weeks to even be seen... they felt like this was serious. Now Ethan and I have to wait. 

pediatric endocrinologist

Phoenix had his appt with his pediatric endocrinologist today. After looking at Phoenix's previous blood glucose levels and all the information I brought, Phoenix was diagnosed as pre-diabetic. He had his A1C test which tells you the average blood glucose level during the past 3 months, it was normal at 5.5 so it looks like we've just caught this at the very beginning, also called the "honeymoon period". He's having more testing done and will have to be seen every 2-3 months. The dr sounded pretty confident that Phoenix will have type 1 diabetes, we just don't know when - it could be in 2 months or 2 years. We don't have to restrict his diet ever, and he's not being put on insulin yet but we do have to test his blood 3-5 times a day. I really liked the pedi endo and his nurse. They all did a great job. The dr was really informative and laid-back but proactive at the same time. Phoenix had more blood tests to test for diabetes antibodies and some other stuff and we'll get those results in a few days. He did awesome though, and this endo office has a "toy bin" only it's not a bin and it is not toys like you'd think a drs office would have - Phoenix got the Shoots and Ladders board game, a new teddy bear and coloring crayons - they were trying to find him a coloring book too but I said he was okay! The nurse was like "I'm sorry, we'll have better toys for him next time." Even though we are dealing with this now, at least he's being taken care of and everyone is super friendly.

Pediatric Oncologist = ass

Today is Ethan's birthday and, this morning, we went to the pediatric oncologist. Our friend got us in to see him, just incase it may be cancer. I have to say - I feel slightly better, but no by much. The doctor said that it didn't feel like cancer and that it was probably just swollen lymph nodes - though he didn't have any evidence to support that conclusion. He told us there are no blood tests that can pick up lymphoma, especially if it's in the early stages. He also said that no surgeon would take the lumps out - that they would laugh at us because they are so small. He seemed to be missing the point - the he has lumps in his neck and they are growing. That has to be something. It's not normal. But, the doctor seemed to have his mind made up before he even came in the room. So, we are just continuing on the path to meet with the ENT in a few weeks. 

Diabetes?

After throwing up this morning and no dairy involvement, we began to wonder what was going on with Phoenix. My dad asked if it could be blood sugar related and I started thinking about it, and it didn't sound crazy. So, about 1½hrs after eating 5 saltines and a strawberry, I tested his blood sugar - it was 317. Thinking it was a fluke or that readings for kids are different I decided to wait and retest. A little over an hour later (more than 2½ hrs after eating) his blood sugar was now 263. I also happened to have glucose test strips and his glucose in his urine was off the charts high. So, of course, I called the dr and she wanted him to come in right away. He'll be having a fasting blood test Monday morning but, even the dr thinks he might be diabetic. If he is it could explain so much - the throwing up, the behavioral problems, maybe even the lump. We'll just have to wait and see. Fortunately the fasting blood draw only takes 24 hrs to get the results from. If it's high then we repeat it. Two high fasting blood draws above 126 mean he has juvenile diabetes. I know it would suck but, I would much rather it be diabetes (which we can treat) than cancer or SPD. I feel like we are on that mystery diagnosis show.