Is this a sign?

Phoenix has always had low, low fasting (morning) blood sugars - generally around 50. Then, during the day it's around 140-160 after meals. it's not uncommon to see up to 200. And then, once in a while, we'll see above 200. It's rare, but it does happen, when his bg is above 300. But, since he has these low-lows his readings average out on his A1C to be just slightly above normal - hence the "pre"-diabetes. 

Well, yesterday Beeb's fasting bg was 117. A fluke I tell you - he must have got food without me seeing it. Nope. Today it was 97. Could this be a sign of what's to come? We'll be taking note of it and keeping an eye on things, like usual, and wait until our next pedi endo appt on Sept. 1st.

School District evals are pointless - sometimes, occasionally, once in a while

Someone please tell me how having a mom fill out yes, no, maybe questions will determine if the child needs to be in any kind of special preschool.

Today Phoenix had "his" evaluation with the Kent School District, in preparation for the three and up program. There were no toys, no questions directed at Phoenix and the Occupational Therapist left after about 5 mins stating that she has seen all she needs to see. She colored with him - that's it. She said that kids with real sensory issues would walk in and scream. Yeah, in the right situation, my child would do that too. She also wrote his name on a piece of paper and asked him what it said. "Me-nix" he replied. She said that he was "just fine." BS lady - write your name and tell him to read it. Chuckling because she thought I was joking when I said "it was a good guess, he'll say his name for anything", she wrote Scarlett which Phoenix read as... "Me-nix" what do you know? She still left to go get her lunch though. If you are going to schedule my eval at noon the least you could do is stay with me to complete it. 

Normally, the person conduction the eval will, with the parent, go through question by question and ask for examples of those behaviors. Clarifying things as you go. But instead, I sat at a table and filled out 50 pages of yes, no, maybe questions. When I asked if I am supposed to score him based on his personality at home or play group or a new situation, I was told "good question" though no one could answer it for me. I also asked how am I supposed to rate certain questions - seldom, sometimes, frequently, occasionally, etc. Phoenix throws tantrums 3 times a day so I put "sometimes" but to some that would be "frequent" and other that is "seldom" - how do I answer that? Also, the mom in me wants to down play and mark things as "seldom" when they might actually be "sometimes" and never wants to mark "frequent" knowing that it could be a lot worse.

No one wanted to hear more about him, no one asked me about specific situations. Nothing. I could see how a child with very sever difficulties would qualify based on this but tell me, a high functioning child? What happens when I drop him off at the first day of main stream preschool and he throws a fit and hurts himself or the teach. Or he's so quiet sitting in the corner by himself that, when he leaves, no one notices. Or that when a kid is picking on him and he can't say anything back because he's so shy that he withdraws even more? I also felt like I was being judged. It wasn't friendly to me. They acted like I was wasting their time.

This eval with the biggest joke ever and I'm ticked about it. To top it off, I don't even get to know any results until the 24th. Thanks for wasting my whole afternoon Kent School District - I could have done this at home. Yet again, Kent School District and the Public School System has failed my family.

Sorry, I've been away.

I haven't been updating - just too busy. 

Phoenix's scar is healing well but it is very visible. If he's anything like me, it'll always be there. Oh well, it's something to be remembered. A reminder of how lucky we are.

We've been controlling his blood sugar well but I haven't been testing like I should. I try to but I just forget. We've seen a few readings well over 200 but, normally one hour after a meal his blood glucose is around 160-180. He gets his A1C retested on Sept. 1st. 

He has his evaluation for the 3-5 program next Tuesday. As much as I'd like him to not qualify because he is "just fine" I know that is not reality, so I hope he qualifies. He has his Autism Screening on August 25th and I'm super nervous for that. 

We are headed to my mom's today because it's going to be hot, so I'll take pictures and post a few next time I update.

There's Nothing But Blue Sky.

Phoenix's scar is looking great. He's doing really well too. His blood sugars have been fantastic and his sensory problems seems to be shifting. He's actually becoming more outgoing, though it's only with a parent or grandparent around, and it's becoming harder for him to sit still. He's constantly wiggling and moving. He falls off a chairs all the time because of it. He's also chewing a lot. This is all normal sensory things though. 

Last night we started swim lessons and he did fantastic. The hardest part was getting him to lay on his back. I got him to rest his head on my shoulder and sit up a bit and he'd be on his back. Also, he was really fearful of not feeling supported, like we were going to drop him. No tears though and he loved it. We go back tomorrow. 

The Healing has Begun

We went in for his follow up on Friday. All the tests were back and they showed nothing wrong - the doctor was very relieved but sort of confused. He said he wouldn't have been surprised if the tests had shown cancer since the appearance of the nodes was cancer to a "T". So, it's nothing and we probably don't need to ever worry about it again but that, if he ever has more lumps, we do need to get them checked out. 

Then we had to remove the stitches. And, let me tell you, it is not an easy task for a sensory child. One of his most difficult things is laying down on his back. So, we had to pin him down to keep him still. If he would have relaxed it wouldn't have taken half as long but it was a screaming battle so it took a while. 

The stitches were removed but, unfortunately, there seemed to be a small pocket that formed when the stitches were in place (like a purse) so an infection formed and we had no idea. There was no sign of an infection at all but, when he took out the stitches, the wound popped open and puss and blood came out of a hole in the wound. I didn't see it since I was on the other side but Ethan told me. 

Phoenix is now on antibiotics and we have to use antibiotic cream and a bandage. And the scar will probably be much larger now. But just 24 hours later it was looking so much better. It looked pretty bad the day of. We've kept it covered with a special bandage for several days now that you don't remove so, I haven't seen it since then. 

YAY!

It's benign! The doctor said he'd tell us more on friday but it was benign lymph nodes!

Not today.

Hopefully tomorrow we'll know something?

Nothing Yet.

No word today. Today almost felt like a regular day. I was so busy I hardly had time to think about it. Plus, the calls are being routed to Ethan first so I don't have to stress every time the phone rings. We have a plan for results: If it's nothing, he calls. If it's something minor, he calls. If it's something we have never heard of, he researches it, then calls. If it's anything serious, he may do some research and then would call while he's driving home (he'd take the rest of the day off). Hopefully, some results will be coming in tomorrow - no matter what they are.

And, it looks like I was wrong about scaring. Really, it was kind of crazy to think he wouldn't have a large scar. It'll fade though. And I don't really care. I have a ton of scars, it's no biggy. Phoenix has my skin tone and I scar really badly. It is healing nicely. Phoenix's grandma said it looks like a caterpillar! Stitches come out on Friday though!

Worse than the two week wait...

I called the doctor this morning. I left three different numbers so that we know we'll get the results we are waiting for. Plus, I was to direct the calls to Ethan if possible. The nurse said that the doctor wouldn't be in until 4PM though so, even if there are results today, we wouldn't hear about them until the end of the day.

Random Late Night Thoughts

I am starting to get very nervous and anxious for the test results. I wish there was a way to fast-forward. I can kill myself reading information on the internet - all of it tells stories that make me feel queazy. Seriously, google some keywords like - hard, lump, lymph node, cluster, neck, etc. I keep going back to how it just can't be cancer - it can't. The thought of my son, a 2 year old, having cancer is completely insane. 
Geez, I was doing so good until the doctor told us about the cluster of lymph nodes he removed. "Two large ones and a bunch of smaller ones" I haven't done any research on lymphoma because - well, what's the point? No matter what, I still have to wait for results. 
I've been searching for something online which will get rid of this sick feeling in my stomach - I need to find a story about someone who has had a surgical biopsy on their lymph nodes (actual lymph nodes, not lipomas or cysts) and they were over 1cm, hard, stationary and in a cluster. But, here's the catch, I need the story to not end in a cancer diagnosis.
Phoenix's two largest lymph nodes were around 2cm. All were hard and were clustered together in a mass.
They were slow growing though - I'm holding onto that hope. The first one appeared over 2 years ago and it was probably only ⅓ cm, most lymphomas grow SO rapidly. And, he's so young. Pediatric Lymphoma is super rare.
Ethan is convinced he's got cancer. He says that I'm starting to annoy him by saying that it still could be nothing.
When Phoenix was a year old he got a high temperature for 5 days. We had no idea why so the doctor ordered a bunch of tests. They saw a part of his lung that was unclear and they thought it might be pneumonia, the radiologist cleared it though. It turned out Phoenix just had rosela. Now I think back to that unclear spot and wonder if that could be cancer. Phoenix has had a shallow dry cough for months now that we just decided it was allergies - it's not all the time. God, what if he actually has cancer?

Battle Wounds

I cleaned Phoenix's wound today. There was purple marker all over him so I got al that off. The incision is nearly 2 inches and he has 7 stitches. It looks perfect though and I don't think it'll scar badly. 

He hates his pain meds. He says they are "too yucky." So we are mixing them in with food and juice. You can tell he's in pain when he's not on them. 

It is really hot here and it would have been perfect swimming/sprinkler weather but we can't risk getting his neck wet. Instead, we filled up a baby pool with a few inches of water and he got to play with his sister in it. After a day in the sun and playing, he was tired and totally worn out. He took about 4 hour nap and is in a pretty miserable mood now. Poor kid.

Heather, Ryan & Sage - Thank you so much for thinking of us. Phoenix was so thrilled to get mail!

Lump-Free!

Phoenix's surgery is complete and he's doing fantastic. 

We woke up at 5AM and packed everything up and went to the day surgery clinic. The awesome guy at the front desk gave all four of Phoenix's stuffed animals ID brace

lets complete with their names. We waited in the reception area for a bit and then were transfered into a different waiting area where nurses were checking blood pressures and anesthesiologists were consulting with patients. I was a bit chilly - maybe from the temperature, maybe from nerves - and a nurse asked if I was cold. I told her I'm fine, that I'm probably just nervous. Then, I overheard another mother tell her husband, "She's nervous, we've done this so many times. The doctor has done 4 of our other kids." Her child was getting tubes. Now, I would be nervous about any surgery but a cervical lymph node biopsy is a bit more worrisome - not really for the surgery per say, but the outcome. 

So, after all the general tests were preformed, they took Phoenix back - screaming his head off. We sat in the waiting room for about 45 minutes when the doctor came out and talked to us. He told us that everything went great. The lumps were right near the nerve that runs from your neck to your shoulder and controls the up/down shoulder movement. So, although it was a bit tricky to work around, they were able to remove all the lumps. They were lymph nodes unfortunately, two were larger (¾" in diameter each) and then there were a "bunch" of smaller ones. Apparently the nurses commented saying the the doctor rarely does biopsies on kids this little but, once Phoenix was open, and they saw the lumps, they understood why. 

There was really nothing that he could tell us about what he thought they could be. He wouldn't even guess. The samples are being sent to two different labs and are being tested for everything under the sun. While, infection related results could be back as soon as tomorrow, the test that takes the longest is the final (and most accurate) cancer test. We were told we should get periodic updates from the doctors nurse over the next week, as the tests come in. From what I understand though, most benign masses are diagnosed at the time of surgery. There are still a lot of other things it could be, aside from cancer of course.

The wound is covered but the incision is about an inch I believe - maybe 2? And he has one continuous stitch which is being removed next Friday. The wound has to stay covered for 48 hours.

When he woke up, we got to go back and see him. He was not happy. With an IV, immobilized arm, bandage on his neck, swollen face in pain and in a strange place - he was freaking out. I think the nurses just wanted to get him out of there - they knew he'd be more comfortable at home. Plus, he was very loud.

So, they pumped him full of pain meds, gave him a popsicle and a bit of juice and sent us on our way. 

Phoenix is doing really well at home. Besides being a bit puffy and having marker and sticky marks from tape all over his shoulder and chest - he is doing fantastic. He's running around and acting like normal. I think the pain meds help, though he's pretty tired and won't take a nap. He sounds awful too - really raspy from the breathing tube. I really want to see the incision and I'm super excited to feel it with no lumps! I am just so happy they were able to take all the lumps out! Now we just have to wait for results. 

The time has come...

We have to be at the hospital by 7AM tomorrow. Surgery is at 8AM. I've spent the day getting things ready for Phoenix. There is a special bed in Ethan and my room for him and I made two kinds of Jell-O and fresh, homemade apple juice. We went out to a nice dinner tonight. Just preparing and talking. We know that this could all be nothing but we also know that tomorrow could be the beginning of a very rocky road. I made a check list of all the things we need to bring and we are ready to go. I had ordered some hospital clothes from Build-A-Bear but they aren't hear yet, they'll probably be here tomorrow. I was hoping Bunny and Teddy could go into surgery wearing their scrubs. Ethan is writing in his personal journal tonight - a very rare occasion. I'll update tomorrow night. I have this hope that, after the surgery, the doctor will come out and say, "When we went to do a biopsy we saw that the lymph node looked completely normal" or "It's definitely a cyst, no worries" - and I really hope they are able to take all the lumps out. Wish us luck. 

Nearly there...

Phoenix is all registered at the hospital. They called yesterday for all the insurance stuff and today for medical history. The nurse today was super nice. She asked why Phoenix wasn't having a needle biopsy and, when I told her our doctor told us that Hodgkin's doesn't show up on a needle biopsy I got one of those, "Oh... oooooh, oh" And, incase you can't read my mind - thats a regular oh, like I heard you, then an oooooh like oh my, now I understand and then an oh like, aw, that's sad. We talked about the foods he can eat after and a little of what to expect. Tomorrow I just have to call and find out our surgery time. 

Today I also spoke with a woman online who's daughter is a cancer surviver. She told me, the worst her daughter ever looked was after her first biopsy - her eyes were puffy and red from the tape they use to keep them closed, her face was all swollen from fluids, etc. It was really good to hear that because I had no idea and I probably would have freaked if I saw him like that. She also told us that the biopsy results could take a week to get back. 

It still could be a swollen lymph node...

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.

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.