Hi,

Last nite my nose was very clogged from all the bloody noses, so I was forced to try and breathe through my mouth. This was actually a very good thing for me, since it had been so long since I've pushed any air through my mouth. Try talking without any air passing through your mouth - not easy. I wouldn't breathe through my mouth upon request prior to last nite. Thus, after a night of breathing through my mouth I woke up and started speaking much better! Granted, my tongue usage isn't the best yet, so my annunciation needs some work, but at least it's louder, a bit clearer, and not so nasally! I'm on my way!! As the day wore on, I became more tired and I tried to revert back to nasal talk, but with a little provoking I will still use my mouth. It's awesome, because communication is a bit better and anything helps. Every bit of progress is very encouraging.

Although I only puked once today thus far, it was a whole meal. Darn, oh well. I'm also fairly tired even though I haven't had any therapies. Hopefully, I feel a little more upbeat tomorrow. I have speech after radiation therapy at 8:30 am. I'll let you know how that goes.

Thanks again to everyone for their kind words, thoughts, prayers and encouragement. I enjoy reading your comments and hearing from you all.

Love, E

Hi Everyone,



It's Monday and it's been a pretty good day. I've only puked once! I had my first OT appointment since discharge and it went great. My mom really liked the therapists. She also liked the speech therapist I saw on Friday. I've done great on all my therapy sessions and continue to make progress every day. Yesterday, I went from laying sideways on the couch to sitting up all on my own. I can't wait to get a walker. The PTs are suppose to be working on it.



On Friday, when I went to radiation therapy, they had another problem accessing my port. I got really mad at the nurses and doctors and yelled at them in a very clear voice, "It hurts, it hurts, it hurts!" So when I'm motivated enough, the words are there.



My Uncle David was in town this weekend with his girlfriend Neda. They showered me with attention and I thoroughly enjoyed it. They do a really good job making me laugh. They left today and I'll sure miss them. So will Brynn.



Well, I'm going to turn into bed early. Hope you all had a nice weekend and have a better week.



Ethan

I puked three times after writing my blog yesterday. Never fails. Today went well though and so far, it's 7:42 pm, I've puked once only.

I had a rough night last nite, waking repeatedly, but fell asleep quickly each time. Then I got up early for radiation and went to my PT appointment where I did excellent and way more than anyone expected. Hopefully, the therapists will order my walker soon so I can make my way around the house. Daddy and I learned a few new therapeutic exercises to do at home to keep me busy. Tomorrow I have a speech appointment which should go well too.

Can't believe it's already going to be Friday.

I got some bad news today. I found out my hospital roommate died shortly after I was discharged. He had Medulloblastoma too. I know my roommate, Caden, who was only an infant, is a lot more comfortable now and no longer in pain. I will miss him. His family was sure nice to me and my parents when we shared a room during the hardest of times. Caden has a very cute two-year old sister, Carly, whom reminded me a great deal of my lil' sister Brynn - very friendly and cute. My heart goes out to his family, they were very kind people and I wish them the best.

Cherish every moment we have, the good and bad.

Nite.

Hi,

My mommy forgot to thank a couple people; Aunt Diana and Great Grandma Pritchett. THANK YOU, THANK YOU!! And to everyone for your words of encouragement, positive thoughts and energy too!

The radiation treatments are giving me superhuman powers. While I take a nap, I can tap into the web with my mind and write this. Yes, that's right, while I take a nap. This nap thing is becoming a habit and my mom likes it. She laid down beside me first and then I guess I decided it was okay to do so too.

Today has been great! No puking, no coughing up blood and I seem to have a little more energy. Perhaps the radiation to the spine was causing the nausea. After radiation therapy, Daddy hung out in the morning while mommy ran a few errands. Then my Grandma Black stopped by and while I was very happy to see her my lil' sis Brynn was even more! Grandma Black agrees that I seem to be making a lot of progress physically.

I'm going bald fast and I'm not happy about it. In fact, I'm in denial. I still pretend I have short hair... I need to get more pictures up on this site. Oh, my eye infection has finally resolved. My eyes still get blood shot red after treatment but they are no longer seeping.

I'm still not talking, but I'm trying. I'll let you know as soon as I do. Tomorrow I have my first physical therapy and occupational therapy appointment since leaving the hospital. The whole family is excited about this. Yay!!! Then on Friday I return to speech therapy too. I'll let you know how those go.

TTYL!

From Mom again:

Big thanks to Dad, Laura, Stacy and Traci, Leslie, Nicole, David Fraser, Ramon, the folks at Parc Place, Goldberg & Osborne, and all those folks out there, thank you for all your donations. Every bit helps!!!

Thank you little Dave and Neda for all your help and support, Mom, Linda and Dennis, Karma and Jared, and all the other lovely souls I'm forgetting who have helped out in some fashion. Ethan and Brynn also truly appreciate the care packages as well. To Keller Williams folks, Lee Stern, Uncle Eric and so on. Thank you!!!

It's Tuesday and it feels like it's been a long week already. Everyone keeps saying, as parents, we need to get enough sleep, eat well, and yada yaday yada... um yeah, I'm exhausted and I'm certain Ryan is too. For some reason, I can't seem to fall asleep when Ethan does and then he wakes me up four or so times a night. He'll need to go pee, roll over, go pooh or his feeding session is over. I don't mind so much in the night it's during the day that I feel whipped. I mean it's only Tuesday and it feels like Friday! I need to manage my rest a little better, I'll admit. I never want to take naps during the day, but that's all I wanted to do today.

Ethan puked yesterday morning and early this afternoon. It sucks, but at least it's only been once a day. His hair is also coming out - majorely. Good thing we buzzed it over the weekend or he'd notice the clumps. He also has been coughing up a little blood, but his lungs sound clear. I think the radiation might be agitating his tract a little or it's just his bloody noses surfacing another way. He is prone to those. Anyway, the doctors are not concerned as long as it's just a little and not from the lungs. He had the hugest bloody booger come out this morning, I mean really big! (Sorry for those who don't want to read this, but nothing is going to be rosy about cancer talk.) The nice thing is, he no longer is going to be getting radiation to his spine.

Tomorrow we move on to just the tumor bed for the remainder of his radiation treatments. We got in a clinical trial which decreases the area of radiation to the tumor bed. They only radiate a slight margin around the tumor bed versus the whole posterior fossa region. We were extremely happy to be randomized for this particular change since all the elite universities have already instituted this change in their treatment regimen for Medulloblastoma. This change should help to reduce some of the long term effects Ethan may suffer from.

Originally, we were hoping for another randomization (lower ray emission) but after we were elected for this one we found out that it was what standard treatment was moving towards anyway. The lower radiation amount is still more in question, hence the trial.

Ethan is fairly tired today. After radiation treatment, I helped him walk around a little, then we went to the Natural History Museum for a short visit, and now he's just been laying on the couch watching dinosaur films. He didn't swing at me when he woke up from anesthesia, so that was a nice change. Actually, he's been in a fairly pleasant mood all day, despite the puking. He only fusses when I make him do his mouth exercises and oral care. And, of course, he's never happy when daddy leaves for work.

So far so good... Hope you are all having a lovely week.

Nikki





-++

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!!!

Today was a good day. Daddy took me in for therapy and I didn't throw any punches at him when waking up from anesthesia. Hmmm, mommy wonders why that is. Anyway, when I got home I wanted to do lots of therapy. I asked to practice walking three times! I had energy and now my mommy doesn't (from carrying me). I also played ball with daddy, mommy, and my sis. Even practiced licking on a sucker. Lots of practice today. I didn't feel nauseous, but my saliva is thickening quite a bit from the radiation therapy. My mom and dad use a suction bulb several times an hour to clean out my spit since I'm not quite swallowing and maintaining all that on my own just yet. This is a side effect from my surgery, part of the Posterior Fossa Syndrome. It is expected to resolve eventually - hopefully within another couple months. In fact, I'm not even smiling yet, but I laugh a lot. Thank goodness for laughter.

My mommy finally got OT and ST scheduled and then PCH called and said they have an opening for PT. Finally, some rehab again. My parents are excited for the guidance. Since I'm in such an acute stage of care it seems logical that rehab therapies would be most important now while I'm trying to regain my abilities.

Most of my day is spent watching movies, playing with cars, and short bursts of rehab exercises like the ones mentioned above. For some reason, I never want to go for a walk outside. But, I live in AZ and it's pretty hot these days. By the time it's evening and I can go out, I'm too tired and my mom hasn't been able to convince me yet.

Mommy and daddy did convince me to go to the Natural History Museum today though. I love watching dinosaur films there. I also picked up some new tattoos - dinosaurs. My "Cars" tattoos were getting pretty old so we finally washed them off and threw on a new dino tattoo. Oh and I went pee in the men's restroom, since I didn't have my hand-held urinal. This may be no big feat for you, but since I can't hold my own weight up up it was a big deal for me. Daddy helped of course.

Tonight I get a much anticipated sponge bath--- I've been putting it off! Tomorrow I get radiation treatment, of course, then my second chemo treatment. Then, I have the weekend off. I don't have to get up at 5:30 AM and drive to downtown Phoenix!!! Plus, I have a little more energy when I'm not getting radiation... obviously.

I'll let you know how my blood counts look tomorrow. Oh, and my eye infection finally seems to be clearing up. This has taken a long time.

Have a great Friday and Father's Day weekend. TTYL.

It's Wednesday and I've had a good day so far. I did not want to practice walking this morning but I did do some leg exercises. I'm usually too tired to do much else, but that's okay - I'm still making progress. Radiation treatment was the fastest yet today. I was in and out in less than an hour. I still try to throw a few punches at my mommy every time a wake up. I'm very irritable for about a half hour after each session even though I'm getting a lite dose of anesthesia. I say no to EVERY thing and swing at my mom any time she tries to put my shirt on or put me in my stroller to leave. Heck, I even swing at her when she offers a new hot wheel to me! It passes though and then everything is just fine... I did clock her in the nose on Tuesday... she was a little more irritated than normal too.

Finally, we got rehab services in place. After the insurance company case manager did not come through with home care, nor my hospital, my mom decided to go with a place she found online that specializes in pediatric care. Also, it's not too far from our house. I will go in for speech therapy on Fridays and occupational therapy on Mondays. Physical therapy is all booked up, so temporarily I'll get PT every other Wednesday. As long as my parents get some sort of guidance and a home treatment plan, we will all be happy with that.

I have not puked since Sunday, although sometimes my tummy hurts a bit. Tomorrow morning my daddy will take me in for radiation treatment while mommy and Brynn sleep in... yay! I love hanging out with my daddy, of course.

TTYL- Ethan

Right after I wrote my blog last night I puked. It was lovely. My mom had just loaded me into the truck to take Aunt Laura to the airport and I puked into a bunch of napkins. Luckily, I did not puke on myself or anything else. After that, I felt MUCH better. And here I just got done telling you how wonderful I was doing.

This morning the nurse was able to access my port without any problems. Whewhoo! So this Monday was much better than last. I'm a little sleepy right now... in fact, I might be asleep on the couch while I write this...

The Radio Oncologist said they'll be wrapping up the spine and head portion of the radiation next week and moving on to just the tumor bed. Progress, progress, progress.

I'll check back in shortly. Have a happy Monday.

Well, it's been a long week. I got through the rest of radiation and handled it well. I'm a bit tired after each treatment, but not sick so far. On Friday, I got my first chemo treatment, Vincristine. That is suppose to make the radiation treatment more effective. I seemed to handle that well too.

My Aunt Laura came to visit this weekend and we had a great time. We practiced chucking little alien figures while my little sis fetched them for me. Aunt Laura also helped me transform some of my Transformers from robot to car and back again... my daddy is not very good at it!

It seems like I'm getting better every day. I'm able to hold my head up for longer periods and I'm willing to try and walk with my mommy. I hold myself up a little while she holds me, but just the motion of lifting my legs and putting them out in front of me is great practice. My mommy and daddy are so pleased that I am even willing to do all this. I still haven't worked out my PT/OT/Speech therapy treatments since I was discharged from the hospital. Hopefully, either PCH or my insurance company gets it together soon so that I can benefit from rehab services. My mom and dad work with me a ton, but they need a little guidance of course as I progress. PCH only had slots during rush hour traffic and we already live 40 minutes from the hospital. They had promised to coordinate with my radiation treatments, but obviously didn't. My NeuroOncologist said she'll work on getting me better times. In the meantime, mommy is working with our insurance co. Case Manager to try to get rehab visits at home, which for now would be best.

I'm still not talking or eating. I get my food, formula, through a tube. I am able to move my tongue and mumble, so making a little progress. I can't smile yet either, but I laugh a lot. :)

I still have an eye infection, which I hope resolves soon. It's pretty goopy and I've had it since Wednesday. If the meds don't clear it up soon I'll have to try a new med.

Tomorrow is Monday so back to radiation... Every day that I go in the doctors ask how I tolerated my last treatment, as if they're expecting me to get sick from it any day now. So far so good! I have to stay out of the sun, as I'm more sensitive to it now. Also, since I've started chemo we might see some change in my blood counts. This means I'll have to stay home more and make sure I'm not subjected to other illnesses. Not that I do much now, but I love going to Target and picking out a new hot wheel. I get mad if mommy and daddy don't take me out now and then.

I'll check in again soon... Have a nice week.

On Monday morning, radiation did not go off without a hitch... the doctors could not access my port, so they tried to give me an IV which didn't work either. After being poked five times and endless screaming, the anesthesia doctor decided to give up and send me over to my oncologist without my radiation treatment. It's extremely important that you don't skip any days in your treatment, which meant I'd have to return at two in the afternoon. Thus, we went to see the oncologist and the nurse there accessed my port immediately with no problem. Not sure why they couldn't earlier. There may have been a clot and the high blood pressure from screaming may have finally unclogged it. Anyway, it works now and my mommy will never let them try to give an IV again. She'll just bypass all that traumatizing mess and make them get the port working. I mean, that is the point of a port.

So after the oncologist accessed the port they took a blood draw and all my counts are looking good. I also went upstairs to remove the last undissolved stitch on my head from neurosurgery and my mom discussed the possible long term effects of Posterior Fossa Syndrome with the NP there. Then it was back to the oncologist again for more talk then drive all the way home, hang out for just a bit, and all the way back for my rescheduled radiation appointment. Ah, what a day!

I handled both of my radiation treatments on Friday and Monday quite well. However, today was day three of rad and I'm a bit more lethargic now. I guess it's catching up with me. That or waking up at 5:30 am.

This afternoon I did some speech and physical therapy exercises with my mom. I'm pretty good at lifting my legs, but I'm not too excited about sitting up on my own. Mom also decided to remove some of the gummy tape left on my head from the surgery scars. It was not a pleasant experience. Needless to say, I got two new hot wheels today. They are race cars and I love them.

I'll let you know how tomorrow goes.

I was finally released from the hospital Thursday. I was getting okay sleep but my parents were getting none. They decided it would be best for my healing process if they were well rested too. I had planned to stay a bit longer to benefit from the rehab services, but Phoenix Children's Hospital (PCH) wasn't really doing much as far as that goes. I really need to work on my swallowing and the speech therapist rarely showed up. Since as an outpatient I'd have scheduled appointments, we thought the physical therapists, occupational therapists and speech therapists might actually show up for those and maybe I'd get more rehab time in than when I was actually at the hospital... we'll find out.

When I got home Thursday I slept all afternoon and even into the next morning... I guess I needed more sleep than I thought! Then I felt like doing some simple errands with my daddy. My mommy was hesitant to let me go, but my immune system isn't compromised yet and I wore a mask every where to avoid picking up other people's germs. I LOVE toys and mommy and daddy bought me more over the weekend. I'm getting too many really.

I love being around my sister and my little dog Buggy again too.

Oh yeah, I also had my first radiation appointment Friday afternoon. It went well, but it looks like they'll be putting me under every time since I get really scared and wiggle too much. That's okay, the anesthesia is not as strong as I thought it was going to be. I wake up pretty quickly after the event. Also, my mommy has me on five bolus feeds during the day now. No more night feeds. Since I'm being fed through a tube, we really have to coordinate my feedings with my whole schedule. I'm tolerating a lot in one sitting though, so I'm lucky. Some kids get sick off of the formula feeds and have to do long feeds which means they are tied up to the feeding machine all day. Now I have six weeks of radiation at 6:30 am Mon-Fri. Can't wait till it's over! I will have a four-week break and then I'll start chemo.

Well, until next time...