HOW IT CAME TO BE:

A post from Mom, Nikki:

Hi All,

Well, we got through our second week of radiation. It's really starting to catch up with our little one. He's pink from his stomach up. We rub aloe on him frequently and it seems to help. He was pretty listless earlier in the week. Turns out his blood counts were low so they gave him a blood transfusion on Friday after his chemotherapy treatment. This is the third one he'd had and the last one perked him up, so we were expecting more energy from him. He has his ups and downs but he does seem to be better than earlier this week. His vomiting has increased a bit. Well, I guess three total is good so far, but one was Friday afternoon and another this morning. He does have some new medications so it's also learning about when is the best time to administer them to him.

For those of you who don't know, Ethan has beautiful blond hair and it was getting pretty long. We noticed quite a bit of hair loss on Friday and decided to buzz cut it before he freaked out. I've talked it over with him several times letting him know he might lose his hair but he's still pretty freaked by it. We figured that with a buzz cut it would be a little less traumatic. He looks adorable with his new do, of course! He has been a trooper.

I thought I would mention how his diagnosis came to be. Honestly, we had no suspicion of anything serious. We thought Ethan had allergies. He was not exhibiting your typical brain tumor symptoms, or at least nothing quite obvious. In hindsight, of course, there were clues, but certainly nothing staring us in the face. I made an appointment because we thought he was suffering from some common Arizona allergies. The only thing alarming was that Ethan had woken up with a few headaches over a two-week period. I wasn't home because Ethan's dad wakes up with him, so dad (Ryan) mentioned the headaches to me. Ryan asked for me to schedule the appointment. I actually hesitated, but we thought if allergies were bothering him enough to create headaches we better get him checked out.

I took him to the doctor on a Friday thinking not much of it. He ran around, talked, walked, played like a normal little five-year old. Although as soon as I mentioned "morning" headaches the doctor started asking me a few million questions. Then he looked into Ethan's eyes with his little flash light and had trouble making out an optic ring. These two symptoms were alarming to the doctor because he knew "morning" headaches and a lack of an optic ring could mean intracranial pressure, which also could mean a brain tumor. I of course knew what the doctor was getting at before he wanted to tell me or elude to it so I questioned him and he gave up his suspicion. He also ran a series of motor skills tests. I have to admit I still was not very alarmed by the doctor's antics until he did this short motor skill test series. I could see that Ethan wasn't able to do some of the tasks requested which I thought he most certainly could have in the past. Especially since one side seemed to be slightly more off. Okay, so now I was worried. Still, I went home, told Ryan and we thought - no, can't be... it will be fine.

Ethan's MRI was Monday morning and since he was so young, they put him under. The staff told us that it'd take 40 minutes or so and we'd probably get results late that day or the next, UNLESS there was a problem. So when the nurse came out after 25 minutes to tell us it would take longer, that the radiologist had requested more images, we of course knew something was up. Another ten minutes after that a nurse took us into a room and said our pediatrician would be calling to give us the news. This meant that there was news and why they couldn't tell us was silly, but nevertheless, after a bit of a wait the pediatrician called us and informed us there was in fact a brain tumor. He'd arrange for us to head directly over to Phoenix Children's Hospital to be admitted that night and that brain surgery would be on the following day. WOW! What a crazy experience.

The MRI took even longer, since they decided to do all the pre-surgery imaging while he was there and already under. Once he woke up we headed over to PCH, but stopped at McDonald's because Ethan was starving and we figured he should get to eat what ever he wants. We checked into the ICU, watched a bunch of movies, and Ethan fell asleep. That was our last "normal" night with our son.

After he'd already been taken for surgery, but while we waited for it to start, we were informed of some possible side effects. Like the mutism (unable to speak) and some other symptoms that I can't remember. They also mentioned that it was likely he'd be able to speak again within two to three months. I don't believe we were warned of how severely Ethan would be effected. Unfortunately, he is suffering from some of the more rare and uncommon side effects; such as not being able to speak, swallow, walk, etc. We pray every single day that most, if not all, of it will come back to him. Definitely some is expected, but the doctors won't elude to how much he'll regain. They think it's because his tumor was so large and so vascular that cutting it out disallowed blood flow to some of the areas that help to facilitate these motor skills and this might be why is his effects are so severe. They say it only happens to kids with Medulloblastoma they think because they are such vascular tumors, but they don't know for certain.

We still would have elected to have the surgery though, because having a successful tumor resection is the most vital part of survivorship when it comes to Medulloblastoma. It's the first step to a very specific way in treating and terminating this type of cancer.

So here we are, battling cancer. Well, here is Ethan battling cancer and we are only able to stand by and encourage the little man. He is truly a wonderful little boy. So sweet, handsome, and unbelievably smart! I know, I know, every one says this about their kids, but it's true. You can ask all the relatives, they'd agree.

We have the highest hopes for Ethan. I have no doubt he'll beat the cancer and I can't wait for him to talk again. He is getting very strong and making bigger movements daily, so I suspect he'll be walking again soon. While all this is very traumatic and truly crazy, none of it matters. Ethan is alive and we are so happy he is here with us. We look forward to many, many good times with him and his little sister Brynn. We will get through this year and come out the other side better people.

Before all this happened, I remember looking at other children with disabilities and the parents that take care of them and wondering how they do it. I didn't think I was the kind of person who would be able to handle it. Now I can honestly say that anyone has the strength and courage to care for someone in need when it's their baby or someone they truly love. Our love for Ethan has not changed a bit and the love he shares with us is certainly no less than before. We still have such a wonderful little family and I'm thankful for every minute I have with all of them; Ethan, Brynn and Ryan.

Here's to hope! Love you all!!!