Got blood?

Went in eeeeeaaaarly this morning and Ethan's counts were still a bit low so he did end up getting a blood transfusion. We wanted to make sure he wasn't in the hospital for Christmas so we took a little extra precaution. He also got his short dose of chemo. He handled it all quite well of course.

The clinic has been showering Ethan and Brynn with toys every time we go in. Today, Ethan got a fooseball like hockey game. He loves it! Brynn got yet another teddy bear. We have stuffed animals coming out of our ears!!! Can't complain too much though, the kids definitely get use out of them.

Looks like we're in good shape for the holiday. Hope you all are too. Be safe and Merry Christmas.

-Love to All

Platelet transfusion:

We came in early this morning to check counts and sure enough Ethan needed platelets. He was at 23 and needs to be above 30. His hemo is also low, now at 8.1, but he'll get that transfusion Thursday along with his outpatient chemo. He has definitely been a bit weaker but doing well otherwise. He's getting excited for Christmas!

Brynn has had a cold for a few days but none of us have caught it. Ethan's ANC is at 1,000 with a high neutrophil count so he has managed to avoid getting her cold.

We will update again after Thursday's check up.

Love to all,

Nikki & Fam

Check Up:

Went in for Ethan's weekly check up and his out-patient vincristine. The check up went smoothly. His counts were fairly low, but not enough that he needed any transfusions today. We will have to go in again on Monday to check again. We don't want his platelet count to go below 30-50 and today it had already dropped to 84. Brain tumor patients are more at risk for a bleed so we have to keep the platelets up.

Ethan hasn't been vomiting as much as he usually does. Perhaps I've finally figured out a way to lesson the nausea. He has been fairly tired the last couple days, his right eye is a little gooey and less responsive, and he has a bit of a head tilt. These symptoms always come around when counts are low. Thus, we're getting pretty good at guessing what Ethan's counts will be based on how he looks and feels. I guessed 9-10 for his hemo and it was 9.4 today. He'll definitely need transfusions at some point next week.

Aside from the above, he is playful and in good spirits. We went to the zoo after his check up and spent most of our time looking at the smaller monkeys. Ethan never wants to stay very long, but it is still nice to get the kiddos out into the fresh air.

Whelp, I hope you all have a safe and happy holiday season. We will post again after each check up.

Love, Nic & Fam

MRI, PEG Tube Button, & 4th Round of Chemo:

Ethan went in Tuesday for his MRI and to switch out his peg tube from a tube hanging out of his belly to a button. He had anesthesia of course and it was a long day. We got there at eleven but they didn't start till after two. We didn't get home till sixish. He recovered quite well though and was up and playing at full throttle by Wednesday.

His MRI looked really good; no changes, only improvements. There was nothing that concerned the doctors with regard to tumor growth. With regard to the right side of the face, there is no longer any white enhancement on the film but there is a significant difference between the right and left muscles. We continue to look for signs of movement on the left, but nothing is jumping out at us yet. However, overall, his face seems to be looking more lifted and natural. He is eating quite a bit more too. We'll just keep praying that everything wakes up.

We went in Thursday for his fourth round of chemo. We got it started in the clinic to get things going faster than if we were admitted to the ward and started it. After he got the big dose, we moved over to the ward. Needless to say, things got going much faster. Which meant we got out before dark the next day. It went well. Ethan has started vomiting two-three times a day now and he'll probably continue this for another week or two then it will slow up a bit. He looks really tired today and has been sleeping more than usual but he has been in a really good mood.

Grandma Greenwood is visiting and Ethan and Brynn are having a good time. We have taken her around town a bit and enjoying the Christmas decor here. The town is really lit up.

We go in next Thursday for outpatient chemo, so, until then, we hope you all have a happy and safe week.

Check up was quick

We were in and out this Thursday. They took his blood and sent us down to audiology where Ethan had another hearing test. He did much better this time since the ear surgery. Still a little hearing loss on the right, but much less than before. I doubt they'll modify the chemo due to it, but we shall see.

Since we've been home from our last unplanned stay, things have been going well. Ethan's eating more and more. He's slowed a bit on the physical activity, but sitting on your butt in the hospital for a week will do that to you.

Next week he has an MRI and gets a button for his feeding tube. Then, on the 9th, he goes in for his fourth round of chemo. It's a one night stay followed by two more outpatient chemo visits day 8 and 15. Then a 3 wk break before we go in again (6 wk cycle).

Wish our little guy luck. He's been doing great!

Love you all!!

Made it home just in time.

We got released shortly after six pm on Wednesday. YAY!!! You don't realize how much you enjoy the simple pleasures of life until you are deprived of them. I cannot tell you how thankful I was to be home last night.

Honestly, on Tuesday night I began to wonder if we were ever going home. Although he had been doing better, he seemed a little wiped out again that evening. I started worrying his temp would go back up and we'd sink again. However, by morning my fears subsided and once again he was doing great. He did have a little complication with one of his antibiotics while we were there. A slight allergic reaction, but nothing that came on sudden and nothing a little benedryl didn't take care of. They never figured out what the problem was but the doctors and I think it was the bug that Ryan and I had. Since his counts were so low, it effected him much more severely. Nevertheless, we really had a lot to be thankful for today.

Anywho, we are soooo happy to be home and he is doing awesome. He's finishing off some turkey as I write. Yes, at 12:46 am. We are night owls! Uncle Cole came over today and helped me cook, or rather, I helped him cook. It was pretty good for a couple vegetarians! However, Ryan failed to remark that the turkey was the best he's ever had.

Thank you once again for all your love and support. We had a great TG today, hope you did too. Enjoy the rest of the holiday week.

Love,

Nikki

Feeling much better:

Ethan was a little cranky this am, but we're all tired of being in the hospital. He's perked up a great deal the last couple hours and is up, moving and tickling Brynn and I.

We haven't had much sleep. Our nurses the last two nights have been noisy. However his counts are slooowly inching up. Hopefully we will still be released by Wednesday. E hasn't had fevers for two days and, although he is nauseous,he is vomiting very little. Nor, have any of the cultures come back positive. No diagnosis, but he is getting better. I feel good too now, just tired.

So, I think we're in the clear from this scare. Thanks for all your messages, love and support.

Nikki

Doing a little better

Just heard that his white counts and hemo are holding! This means we are no longer on the downward slope from chemo. However, they still don't have a diagnosis. Flu came up negative. No cultures have grown back yet with infection.

Ethan looks waaay better this morning. I think the fevers are lower and less frequent too. He should be on the road to recovery. Now let's hope they'll realease us before Thurs!

Until later...

Rough night, but better day...

He's snoozing now, while getting a blood transfusion. He had some horrible shakes in the night, but he was so delirious he doesn't remember it. He's still feverish today, but is in good spirits.

Looks like we could be here through Thanksgiving, but we're hoping for an earlier release, obviously. No word on whether it is just the flu or a port infection. As soon as we do know, I'll post.

Pray and think positive for our little guy.

-Mom

Back in the hospital

We just can't get enough of this place. Ethan continued to have a fever all day and was on the cusp of a mandatory ER visit so we called the docs after all. As we suspected, they recommended we bring him in to be sure he does not have a serious infection, like a port infection. Unfortunately, when we got here we had a nightmarish time trying to get his port to work. After multiple pokes, and a couple hours, it finally started working. It was another horrible, traumatic experience for Ethan. He is now watching a Thomas movie, trying to relax. He seems to be very relieved.

Now, we wait a couple hours for the initial results of the blood work, but will know much more in 24 hours, due to the culture process. They've started the antibiotics and tylenol. We will be here for 48 hours,at least, for monitoring. Hopefully, it's nothing serious and we don't have to stay longer.

So folks, pray for our little guy that he recovers comfortably and soon. I'll post again soon.

Now, for a little rest...

Check up after 3rd Round of Chemo

We went in Thursday for Ethan's counts and Ethan's out-patient chemo (Vincristine). After I didn't hear back from the doctors regarding Ethan's counts, I called Friday morning and found out he needed a platelet transfusion. His ANC has dropped to 400 and his white blood cell count was pretty low.

We went in yesterday for the platelet transfusion and have been hanging out since. Unfortunately, this morning Ethan woke up with a low-grade fever. Ryan had a little bug on Thursday and it seems Ethan and I have contracted it. We just feel kinda achy and Ethan's a little feverish. As long as his fever remains low, we won't have to take him into the hospital. PRAY he pulls through. This is like the worst time for him to get sick with his ANC being low.

He's a little trooper though, so we"ll remain positive.

Other than the above, there is nothing really too new to report on. He had a great week and has been fairly active. He also had a great time with his Grandma and both he and Brynn were sad to see her go.

I'll post again soon with any changes. We are due for another check up Wednesday.

We hope you all have a relaxing weekend.

3rd Round of Chemo

We went in Thursday morning and got out around 8:00 on Friday night. We were happy we didn't have to stay two nights. Things got off to a late start, as usual, but Ethan handled the chemo like a pro so we were released without any complications. I hear that kids usually have to stay a bit longer for hydration reasons but Ethan was well hydrated and had no problems urinating. Since we've been home, he has been a little nauseous, but is doing better than the last two rounds. This is a different mix of drugs though, so that's probably why. Every third chemo cycle the drugs are different from the first two.

My dad popped into town for a few days before Ethan went in and we all had a good time exploring the town together. Ethan and Brynn got lots of new toys and Grandpa got lots of new hugs! We were all sad to see him go.

Right after we dropped him off, Grandma Black flew in. Now the kids are having some more fun hanging out with Grandma. Today, we went on the train. It was kinda chilly. We're not used to 60 degree weather!

As a whole, Ethan is doing really well. He talks all the time now and his voice seems to be getting louder and louder. Sometimes it sounds just like it did before surgery. His lips are coming closer and closer together, but not all the way there yet. He has a little more facial expression and, although it is very gradual, it is starting to come around. He definitely has off days. It seems like there is no explanation for them but he has been through two surgeries and chemo all in a very short time period, so that's my explanation. Obviously, there is an accumulation effect from the chemo too. His anxiety really peeked after the peg tube surgery, but I think and hope it is starting to level off now. He continues to work hard at all his therapies and we see progress in every area. He likes his new posterior walker, as it supports him quite a bit better. He can walk with it unassisted for short bursts, but he still needs a spotter.

Despite his illness and treatments, he sure is a trooper and seems like a happy little punkin. We are so thankful he has come so far and is doing so well.

He has an MRI and peg tube modification scheduled on December 7th. We're obviously curious to see if there are any changes in his brain and with his right-sided facial atrophy. We are also excited to not have a tube hanging out of his belly. They will now replace it with a button-like access that is flush to his skin. It will make everything so much easier. He will not have to stay the night, thankfully. Until then, we'll continue to check in with the doctor on Thursdays for out-patient chemo and blood counts.

We wish you all a happy holiday season and thank you for all your positive thoughts and prayers.

Love,

Nikki

Peg Tube Surgery

We went in early Monday for his surgery and Ethan was released around 8:30 last nite. We were very happy to come home. Overall, the surgery and recovery went well, but Ethan has developed a huge anxiety problem. The stay in the hospital was a little rough. Basically, every nurse or doctor who enters the room makes Ethan tense up and shut down. He is so afraid of everything they do.

It didn't help that immediately following surgery, about two hours post, they postponed giving him pain meds once he was transferred to the Pediatrics Ward. This was due to some resident not entering the orders when they were given but waiting several hours to do so. Meanwhile, Ethan was crying and in severe pain for about two hours till the pain meds were finally administered. Needless to say, I was extremely unhappy and from that point on Ethan was a bit untrusting.

However, after that incident the care improved. Unfortunately, I think Ethan is just traumatized by everything that has happened that last six months and he really hates to be in the hospital.

This morning PT & ST have already come by. Although he is definitely taking it easy, due to the surgery, he is doing well. He has had low grade fevers in the afternoon and at night but nothing to be concerned about. Last nite, Daddy went out and bought a new game for his DS and the new dragon movie. We felt he deserved a reward for what he's been through. (The surgery/procedure was a little more serious than even I thought.) Brynn got a new little automated puppy too for tolerating only Ryan and Uncle Cole the last couple days (teehee).

Thankfully, Ethan gets a break from the hospital until next Thursday! YAY!!! Plus, it's awesome to see his little face without a tube running through his nose. We are still seeing slight improvements in his facial muscles. I think (hope) I see a little improvement on the right too. Pray that side begins to wake up.

We will update you if anything changes with Ethan's recovery, but I think he's doing really well now. Unfortunately, Brynn seems to be a little sick. We will see how that develops and hopefully doesn't effect Ethan.

Thank you to everyone for your positive thoughts, prayers, and energy. We really enjoy and appreciate all the support we have been given by all of you.

Love,

Nic

Ear Surgery

Ethan's ear surgery went well. Although we arrived at the hospital at 5:30 am, it did not start till 8 am. Then, it only took about ten minutes! It seemed like they were rolling him back to me before I could get through one page in my book. It went really well and Ethan does not seem to be in any pain. Initially, when he woke up from anesthesia, he was crying saying his ear hurt but the nurse repositioned his head and then he was just fine.

We came home, hung out a bit, and then both of us crashed out on the couch. Brynn managed to entertain herself through our two-hour crash by watching Imagination Movers and Mickey Mouse Club. Although, I remember receiving multiple kisses and apparently I was playing dress up with her as she had her butterfly wings on me and all her princess jewelry out over me. She has really been a trooper through all this. I feel like she definitely has had an altered two-year old life with Ethan getting sooo much constant care, but I think she is handling it pretty well.

We are looking forward to the weekend - no appointments - but we will soon be back for the g-tube insertion. However, we gain quite a bit by getting rid of that ng tube.

Have a great weekend. Love you all!

Check Up & Transfusion

Back from the hospital and both kids are snoozing on the couch. Ethan got a blood transfusion and all is well. Tomorrow, we are to report to the hospital at 5:45 am for his right ear tubing. Pray all goes well.

Then, on Monday, he'll report at 7am for his g-tube insertion and will need to stay overnight for that as it's slightly more invasive. He has been a little anxious today and I'm sure it's from all this surgery talk and preparation. I can't wait till mid-week next week when all this is behind us and he is feeling a bit better. Plus, he won't have a silly ng tube!!! He is really looking forward to that too.

Update you soon.

-Nic

Ethan got a fever Sunday night and it got up to 38.2. The cut off for taking him to the ER is 38.3. I called the doc and explained he had a temp and that his right ear was bothering him. I explained that Ethan and his sister were roughhousing and Ethan's ng tube was pulled out. I had to re-tube him. We think this irritated things and some formula got up in those passages when it was pulled out. The doctor thought so too and told us to give him Tylenol , watch his fever, and bring him in the next day to the clinic to avoid the ER if possible.

When we went in yesterday morning Ethan was already feeling much better and didn't have a fever. He was prescribed antibiotics for his ear, got his blood counts, and we were sent home! What a relief, the old hospital would have had us come into the ER on Sunday and kept us for a week! Different philosophies about care we think. I like this one much better.

Ethan would have started antibiotics after the tubes were inserted on Friday anyway, so now we are just starting them a little early. He is doing well today and had his OT appointment this am.

On Thursday, when he goes in for his regularly scheduled appointment they will already have his blood transfusion ready for him since they typed him yesterday. No more eight hour days at the hospital for a two-hour blood transfusion! YAY!!!

I am really liking the Army Hospital.

I'll update you again on Thursday or Friday after his first surgery.

Have a good week!

Ethan went in yesterday for his last vincristine dose for this round of chemo. His counts were surprisingly high. He didn't need blood or platelets! His hemoglobin was getting very low, but he'll just get a blood transfusion when he goes in next week.

He has been having multiple therapies all week and seems to really enjoy them. Right now, we are waiting for his second official speech visit since moving to TX. Hopefully, he enjoys speech as much as physical and occupational therapy.

We also went to our pre-op appointments for the G-tube insertion and right ear tube insertion this morning. We are all set to go for the 22nd & 25th of October. They decided to split the procedures up. As long as his counts are decent next week, they will go ahead with both surgeries. The second surgery, for the g-tube, will require at least a one-night stay at the hospital, but Ethan should be feeling much better just in time for Halloween.

He has been a little nauseous but holding mostly everything down. He continues to eat a little by mouth every day, but is still not able to swallow liquids very well.

Have a great weekend!

Love, Nic

Ethan did really well with his second chemo round while he was in the hospital. Since we've been home he has been nauseous and a little more tired, but doing good otherwise. Just today, he only puked once so hopefully the nausea is subsiding. He had a dose of vincristine on Thursday and will have another one next week. Then, he'll have a 3 wk break, which he will need. He may need platelets or a blood transfusion next Thursday as his counts will probably go down for the next week or so.

The doctors are still planning to drain his ear on the 22nd of this month and now they might also insert a g-tube. We have been using ng tubes for so long that it seems logical to have a g-tube now. This is basically a hole in his abdomen that we can open and close and feed him formula through versus the current tube that runs through his nose and down his throat to his stomach. We think eating will become easier for him without a tube constantly shoved down his throat. Plus, we won't have to re-tube him monthly. Ethan HATES when he has to be re-tubed. He says it is worse than being poked in his port and you should see him before that happens!

He has been having steady physical and occupational therapy visits which he enjoys very much. Speech therapy has not yet started. Hopefully that will happen soon as well. He did have a speech evaluation on Thursday. It seemed more like an IQ test rather than a speech eval, but comprehension is closely related to speech. Luckily, Ethan has not lost any comprehension and didn't have a problem with the eval. He really just needs to work on the physical aspects of speech. He still has a lot of facial weakness. He is getting closer and closer to closing his lips all the way, but not quite there yet. I see more and more twiching on the left side and nothing on the right yet.

Uncle Cole found an apartment down the road from us which is awesome for the convenience and emergency factors. He'll probably be spending a lot of time with Brynn while Ethan receives his various therapies. We are really happy to have him here.

Ryan is adjusting to the new job/school. His coursework will be intense the next couple months, but after that it should get a little easier.

The kids and I are settling in nicely to the area. Still enjoying the cooler weather and greener scenery. The mosquitos are tearing Brynn and me up though! For some reason, they don't bother the guys.

Well, have a nice weekend. I'll try to fill you in after Ethan's chemo visit next Thursday.

-Nikki

On my recent checkups, my counts have been good. No blood products have been needed. My speech has been coming along superbly too. My Uncle Cole thinks I'm walking better too. My strength is good, it's really just balance and coordination that I am working to improve.


I had a hearing test last week and I have moderate hearing loss now in my right ear. This may still be temporary or it could be permanent and from the radiation. Time will tell. In October, I will have a minor surgery to drain the fluid from my right ear. This, hopefully, will resolve my hearing loss.

Not sure if the right side of my face has come online yet. A future MRI may tell us something. There has been some recent twiching on the left (when I practice smiling).

Today, I am at BAMC receiving my second round of chemo. I have a lot of anxiety before any appointments but am comfortable now. My port was accessed without any trouble so that helped. I have a huge room all to myself and have been watching movies and playing computer games on my Uncle's laptop. They started chemo around 2 pm, so I should check out at 2 tomorrow. Wish me luck.

San Antonio is beautiful. This past week we checked out the local Zoo. It was great and I plan on making plenty more trips there. We also go to the local science museum. They're both within walking distance, so I'll get to go once or so a week!

My mom contacted Make a Wish and soon I'll get to pick a wish. Any ideas??? Please leave them in the comments section. I've always wanted a motorized vehicle of my own, but I am also contemplating an Alaskan Cruise (maybe see a Polar Bear). So leave ideas in the comments section for me, I'd love to hear them.

Have an awesome weekend. I'll check in with you soon!

Ethan

Hi All,

Met my new doctors and they were extremely nice to me. The clinic is really nice, has tons of toys, and a huge playing area. This will come in handy for me and my lil' sis Brynn. They let Brynn ride tricycles up and down the halls while I played games with the docs. We were showered with toys too. I don't think I'll get bored when I have to stay overnight. The setting is really clean and I'll get my own room when I check in! That was the absolute worst thing about Phx Children's, even if it was a good hospital.
I get truly freaked out when I know the docs are going to access my port now. I get anxiety for at least a day ahead if I'm aware of an appointment. It's never as bad as I anticipate though and I perk up immediately afterwards.

San Antonio has been a lot of fun so far. We go on long walks through the park and woods every night or check out all the Victorian houses and mansions around. It's really pretty and there is a zoo, museums, and gardens within walking distance from my house. Oh, the Riverwalk is really close too.

I've been walking around the house a lot. I think I'm getting a little more comfortable with my walker too. I eat at least a snack a day now too! My parents are really happy about my progress.

My Uncle Cole has moved out here too to help out. He just got here yesterday. His dog is a lot of fun and Brynn likes to play frisbee with him. Oh and Uncle Cole was trying to teach Mom how to cook. She literally slaved away in the kitchen for four hours! I think they had fun though. I played with some clay for almost half that time while they cooked.

Dad has been going to orientation daily for his new job. Hopefully, he's starting to feel more comfortable with our new change. I think we all are. Our house is a very cute and very old Victorian; we all like it.

Well, wish me luck that I continue to feel so well and keep making positive changes. Thank you and love you all!

Little Ethan

It has been an interesting day. This story makes its way around to Ethan eventually. As many of you know, Ryan just joined the Army. We are waiting for military benefits to kick in and for Ethan to be assigned docs here in TX (still pending). Since Ethan's diagnosis, we decided to invest in a larger vehicle to help transport the whole family comfortably,including wheelchairs, walkers, etc. We bought an older Ford Explorer and brought it out to TX. On the trip, we noticed some odd sounds so Ryan took it to the on-base mechanic. They said a dealership would need to fix it and it could be a thousand or two. Well, we woke up this morning to drive it over to the local Ford dealership for repair. Unfortunately, it blew up. Okay, okay, it didn't blow up but it made crazy sounds then died. Then tons of oil started leaking out. Awesome!

Soooo, the dealership arranged for a tow truck to come out. The guy gets here and does his thing and leaves with our car. (He suspects a piston rod blew threw the engine. Are we up to 5k now?) Later in the day, the service rep tells me the tow car driver waived the fee. He did meet Ethan and I was pretty distraught while he was here. We thought what a kind thing to do.

Well, we just got back from running an errand and found Bill, the tow truck driver, in our front yard. He said we really touched his heart and turned around and showed us a scar like Ethan's on the back of his neck. He said he had a brain injury, same region as Ethan's. The doctors told him he wouldn't walk and look at him now! He brought with him a battery for our old beater Nissan, that won't start without a jump, to help us out.

I can't believe how awesome and kind people are!!! Bill is amazing. All large and small gestures continue to touch our hearts as well.

Ethan has been doing great. His ANC was pretty low on Friday and the doctors were concerned about him developing an infection, fever, etc. while traveling but he has done superb. Despite the low ANC, he has had a fair amount of energy. He wants to walk everywhere and talks all the time now.

He is at his new hospital in TX right now getting checked out and getting a new doctor assigned. This morning he got to see his daddy get his first salute as a Second Lieutenant Army Officer. The General gave Ethan his own Warrior coin during the ceremony to recognize his own fight. It was quite a surprise and a wonderful gesture. Ethan will cherish that coin.

We will keep you posted. Hopefully his ANC has started to climb since Friday.

Sorry about not posting earlier, we have been in the process of moving. I promise to update more often once we are settled. Ethan has been doing great; talking (getting clearer and clearer), walking (assisted), and in much better spirits overall. He did have a blood and platelet transfusion on Monday, but has still been really happy and animated lately.

This cancer thing is not an easy road to travel, but our little guy sure is coming around! We hope and pray we continue to see these positive changes... Well, we know we will.

He has one more AZ dr. visit before he takes the final drive to TX. We will check his counts on Friday and they'll boost him up, if needed, then we will head out and start again in TX. He is not due for another round of chemo till the 27th, so hopefully his little body kicks into gear and starts creating hemo and platelets on it's own.

Thanks again to everyone who has helped us on this journey. We love you all and appreciate everything ALL of you have done for our family. We look forward to many more positive posts!

Love,

Nikki & Fam

First Chemo Cycle Dose

Here we are at the hospital. Ethan has been doing really good with just one, minor vomiting experience thus far. If he continues to do well then we will be released tonight at 9:00pm. The chemo was given over a six hour period last night, following two hours of hydration. He slept through most of it, aside from having to wake to go pee every hour. He has been very snugly and sweet all day.

I ran into Ethan's favorite doc, Dr. Maze, in the hall. Afterwards, I told Ethan he might drop by to see him and Ethan pointed to his fingernail and laughed. This was because Dr. Maze had promised Ethan he could paint one of his nails on his last day of radiation. Because Ethan got a port infection and radiation was delayed, he never got to do it. Ethan remembers everything! (For those of you who don't know, every time I paint my nails Ethan requests that at least one of his be painted too.)

Dr. Rosenfeld went over Ethan's recent MRI with me yesterday. There was a little enhancement in the tumor bed cavity, but that could just be some scaring. We will know for sure over time. She also went over some right-sided facial atrophy. It looks as though he has not been using his facial muscles on the right since surgery. Neither the neurologist, neurosurgeon, radiologist, or ENT docs can explain it. Hopefully, Ethan regains the use of that side eventually. The ENT dr thought it would be 6-12 months before we know for certain. Our doctor will present this development to the tumor board tomorrow to see if anyone has any ideas regarding the cause.

We are very happy to be almost done with his first in-patient chemo stay. Very happy that it has gone so well too.

Thank you to everyone for all your positive thoughts and prayers. Love you all!

Nikki

Ethan had his MRI today which went well. He had a little trouble waking up, as he was a bit irritable. After that passed, the doctor called and said the tumor bed cavity and spine looked good. The only issue was the right side of his facial muscles had more fatty tissue than the left. The doc was checking with the neurologist to see why and will get back to us on Monday regarding.

He checks in Monday for his first cycle of chemo since his break.

Wish him luck!

Hi Everyone,

I've been getting along pretty good. I have had a lot of energy and I am always up for a walk to the bathroom or even at the park! Today I've had a bit of an upset stomach from my weekend antibiotics that I have to take, but other than that, I'm doing good. I ate half a pudding cup yesterday. It's still really hard for me to move my cheeks, so it's a slow process but I'm making progress. I'm making more of an effort to speak, but I still have trouble with phonation - my sounds aren't clear yet.

I don't have any doctor appointments this week, aside from an MRI on Friday. I do have speech and OT, but those are always pretty fun. Next Monday I check into the hospital for a night to start my chemo cycles. I hope I only have to stay one night... :) Wish me luck!

Thank you again for all your support.

Ethan

I had a great weekend. I went to Tucson and went to the Wildlife Museum, which was full of stuffed animals. It was really neat to see the actual size of all the exotic animals of the world! Many towered over me and I loved it. My lil' sis got to go swimming with my Aunt Laura at the hotel pool, while Mom, Dad, and I played new DS games. We also walked around Fourth Ave. It was a nice little getaway.

Yesterday, I wrestled with my Aunt Laura for over an hour. I repeatedly got myself up into a sitting position. I had so much energy! This morning, I had my hearing test to be sure the radiation didn't do any permanent hearing loss. Things checked out pretty good. I did seem to have a little fluid in my right ear, but nothing they were concerned about. My ANC (blood count) has gone up, so things are looking up there too. It's no wonder I have more energy. Even though they had to access my port at my appointment today and I got really mad about it, I had a good visit. Everyone was very impressed to see how well I'm able to walk with assistance.

A few minutes ago, I crawled to the edge of my bed and sat up on the edge all on my own for several minutes. My mommy didn't think I could do it for as long as I did. I showed her!

So it's all good news on my end. Hope you all are doing well too. Thanks again for all your love and support.

-Ethan

HI,

I've been doing pretty good lately. Got over the nasty infection and slowly starting to come around. I continue to be able to sit up for longer periods and work hard by practicing my walking. I've been using my new walker. My mommy just holds my hips to help my balance, but I do most of the work.

I keep puking up my feeding tube. Mommy has to put it back in... I hate it... although it goes in really easily now and super fast. Still, I fight it. Mommy thinks it is coming out more often now possibly due to more throat muscles and mouth muscles waking up. However, while it was out, I had several bites of ice cream this morning!!! I'm going to try to eat a little bit every day now. My upper cheek muscles still have not woken up though, so it's a little challenging getting the food to the back of my throat.

This weekend Aunt Laura is in town. She's taking the family down to Tucson for my much-needed vacation - FINALLY!!! We decided to keep it closer to home and air conditioned. Plus, Tucson is kid friendly with lots of museums and stuff for me to do. I'm very excited about it.

I have a few doctors appointments within the next couple weeks, but no chemo till August 16th. I will check in then for a one-night stay at my hospital and receive a round of chemo. A week after that I'll receieve an out-patient round of chemo and then again one week later. Then, I'll have three weeks off. This will be recovery time until we start the cycle over again. So really it's a six-week cycle, but I receive chemo only in the first three weeks. Not excited about it, but at least I'm making progress. Once I start on August 16th, I will have 48 weeks of treatment - hypothetically. If I get infections or have to hold off on cycles that will set me back.

Thanks again to Everyone for their donations and support. Everyone has been really kind and amazing.

Love you all!

From Nikki:

Ethan is doing pretty good. We go in for a check up and blood work tomorrow. Hopefully, the infection has completely resolved. The antibiotics have been pretty heavy. He has been just as tired as before. We hope he gets more energy before he has to start his chemo cycles. The first round is expected to start on August 17th.

I hope we see a little more strength in him some time this week. His last dose of antibiotics was last nite at 10. We were warned that they were pretty heavy duty drugs.

On a lighter side, we went to the Sonoran Desert Museum yesterday. The kids had a great time and so did we. It was such a nice afternoon. Grandpa and Grandma Black came a long and I think everyone had a lot of fun.

We are starting to tear down the house and prepare for the move. We really hope the transition goes smoothly.

Thanks again to everyone's emails and notes with encouraging words. Ethan still needs all the love he can get! Thank you All!!!

...Until next time

I was released yesterday afternoon. What a relief. The hospital isn't so horrible, but I get quite a bit more exercise at home, not to mention, everyone sleeps better. Thus, we're all very happy to be home again. My parents are now administering the antibiotics through my port and they find it to be really easy.

Lately, all I want to do is play UNO. Today, my Grandma Black came by to play with me. She almost put me to sleep! He, he.

I'm bummed I didn't get to go on my UT trip... mom's trying to figure out something fun for me, but now the doctors are trying to schedule more and more appointments for me. I was suppose to be on a break! Oh well, better do what the doctor orders and stay healthy.

Soon we'll be moving to Texas. Mom and Dad are trying to work out all the kinks so that my transition goes as smooth as possible, but the Army keeps changing things on us. Go figure! We're all trying to keep a positive attitude, although it's challenging at times.

Regardless, I'm really happy to be done with radiation and seem to be doing better daily. I sit up unassisted for much longer periods and I'm working hard on my walking. I also talk a lot more now. I don't quite speak clearly yet, but at least I'm willing to try.

I've been laughing a lot more too. What a blessing.

Well, I hope you all have a wonderful remainder of the week.

-Ethan

From Mom:

Ethan's been in the hospital since Wednesday night. He developed an infection caused from bacteria in the line of his port. This is common, but life threatening. Fortunately, we caught it right away and took him to the ER at the first sign of malaise. He had a high temperature initially, but has not had a fever or showed any further symptoms since checking in Wednesday night. The doctors are taking his infection very seriously and won't let us check out even though he appears to be doing super great. It's unbelievably frustrating. Protocol, procedures, you name it - they just won't let the little bugger out! As of today, they're talking about releasing him tomorrow and we'll continue to administer his antibiotics at home.

As usual, we are frustrated with the hospital. I think I've mentioned before, I feel like each doctor there is great individually, but the system at the hospital is lacking. Seems like every hour a new doctor is assigned to Ethan, which of course makes us weary of any decisions they make for him no matter how skilled they are. He has a Neuro Oncologist assigned to him in the clinic who has followed him through the whole process, and while we are happy with her skill level and care, it's very frustrating that she is not the assigned doctor in the hospital setting. She is informed and has influence, but not always calling the shots in-house. We may not always agree or like what she has to say, but communication with her only would truly be ideal. So many mixed messages and different viewpoints come across when we discuss our son's care with five different doctors in less than a week. I realize it's probably this way in every hospital, but it just seems crazy. Trust issues arise. If we were billionaires I'm sure we'd have our pick of doctors and could have just one doc assigned too... but we're not.

On top of it all, we're now having a few issues with our Neuro Onc. I think this is because we are parents that question every call and it's hard for the doctors not to take a personal offense and assume we are questioning their abilities. However, the last thing I want to worry about right now is whether or not my son's cancer doctor likes me. Oh well, I suppose we'll jump this hurdle eventually too.

So, we're shooting for release tomorrow. Ethan did not go to rad on Thurs, doctors wouldn't let him because of infection, so we made it up today. Thus, he has graduated from radiation!!! Yay!!!! Utah trip is off, but we should find some alternative, fun plan for Ethan to enjoy by next week, hopefully.

Wish us luck!

Today's chemo appointment went well. I didn't need a transfusion. My counts are really low, but the doctor thinks I'll recover over the weekend on my own. I do seem to have a little more energy today than I usually do by Friday. I have done my usual Friday vomiting, but I am also puking much less overall. Sooooo happy about that.

Only one more week of radiation. Yes! Then, I get a four week break. My Grandpa Pritchett and Aunt Laura in UT have a nice visit planned for me the first week I'm off. We'll do a little camping in UT- don't worry, it's safe and we have all the amenities. Then, check out a dinosaur museum and possibly the aquarium too. A much needed good time... no pokes, no meds, no doctors!!!

Like I said before, I can't wait to see how much progress I make over this four-week break.

Hope you all have a safe and happy weekend.

-Ciao

Today my mommy didn't wake up til 7am! That's about when I'm half way through my radiation appointment. Somehow her phone was turned off and my lil' sis Brynn woke us up. However, the radiation department was awesome about it. We just rushed in as fast as we could and they let us in. Whew... close one. My ST appt was rescheduled to Friday, that therapist didn't mind either. How refreshing for people to be so kind about it.

Well, as usual, I'm wiped out. The radiation has a huge toll on my energy level. Mommy and daddy were trying to cram in two to three therapy exercise sessions a day, but lately they've been lucky if I give them only one. I'm not to keen on my at-home speech therapy either. Mommy has to bribe me for five minutes before I'll do my mandatory oral rinses (3xday) and then she'll sneak in some ice chips and oral massage on me. I can't stand it! I fight big time. At least my flailing arms and legs allow for some additional work outs. Mommy talked to the Radiation Oncologist about this and he did not seem surprised at all. He said it was typical for me to want to just sleep and lay around this far into radiation. At the cellular level, it's wearing me down. Luckily, I have only seven more days of it. I am thrilled it will be over very soon.

I did start crawling a bit at my last PT session. I'm too weak for the walker at this point, so this is an alternative method to getting from the couch to the toy box (very important business). The PT now suggests a posterior walker so I'm going to try one out on my next visit and if it works nicely we'll get one of those to replace the useless (no wheels) walker I have now. Mom says it nice to see my butt up and moving, even if it's assisted.

I'll check in soon and let you know how my oncology/chemo appointment goes this Friday. Wish me luck.

Love ya!

It's now Saturday and I'm doing much better than yesterday. Since I get my chemo on Fridays, I usually puke and feel very tired and weak. I'm really happy I don't get radiation treatment on Monday... a nice three-day break. Then, I only have two weeks left of radiation. Thank goodness! It's only been four weeks so far, but it feels like a really long journey.

I was very tired this week but cut back on my vomiting. My blood work showed that I am low on my counts but just above the cut off for getting a transfusion. It sounds strange but my mommy was actually disappointed I was just above the cut off, because after getting a transfusion I have so much energy and do so much more. I really didn't have any energy in my therapy sessions this week. I was so weak in my PT session that once again the therapist did not order the walker. This angered mommy, as I have my good days and bad days and just because I'm extremely weak this week does not mean I should not have a walker to practice with when I am up to it. Thus, daddy convinced my Neuro Oncologist to order one for me. It arrived yesterday!!! We were promised one when we were discharged from the hospital and got it a month later. You can imagine how much practice I could have had with it already. That's okay though, we'll take it from here. Although when it arrived, it did not have any wheels on it. Now we have to wait for the replacement, but since I'm worn out I can wait a bit longer. For now, I'll practice standing with it.

I never want to do my exercises but once I get started on them I have a lot of fun and do more than is expected of me. Well, at least when I'm at home playing with mommy and daddy. He, he.

I'm still breathing through my mouth but resistant to talking. I'm just so tired. I know I'll do more when I perk up. The radiation and chemo really does a number on my little body. I can't wait for my four-week break after I'm finished with radiation. It will be interesting to see how much I progress at that point.

My hair did not completely fall out. I still have coverage over my whole head, it's just really thin. It started coming out so fast I thought for sure it would all fall out. I'm happy with what I have left.

My right eye is still not tracking as it should and my parents speculate it's getting weaker. We'll see how things go on my break. The doctors do not seem overly concerned by it at this point. My right arm, however, continues to improve. I get a little stronger with it weekly although I still rely heavily on my left arm.

I hope we all have a nice weekend!!! It's hot but beautiful outside.

-E

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...

Well, my mom is REALLY tired. But we're hanging in there. This morning Uncle Cameron and Daddy brought me some new airplanes, jets and cars, so I'm pretty happy. I'm still making progress... trying to talk more and more. My lips don't quite come together yet, but we're getting there. I practiced speech therapy with mommy this morning and tried to quit after a minute, but a sucker enticed me back into practice. I did pretty well.

Today my parents encouraged the docs to let me go home soon. They all sounded pretty confident that I would be going home by Wednesday which could actually mean Thursday around here. Still, that is really exciting. I'll still have my feeding tube and possibly a suction tool, but I've been pretty healthy for several days so we should be in good shape. Wednesday is also the first day I go in for radiation. They don't actually start but set the machine up for me and "map it out."

My newest roommate had a horrible cough so Dad an Mom got really upset and the doctors decided to send that patient upstairs to the infections floor. I sure hope I don't get sick, I've had enough bumps in the road.

Looking forward to starting treatment, wish me luck!

So all the big docs in town think I'm doing quite well. They're finally starting to see what my parents see all day long. :) :) Anywho, they might send me home this coming week and I'll get to come in Monday through Friday and do my radiation and rehab therapies out-patient style! I can't tell you how happy I am to hear that. I'll get to go home and see my best bud, Ladybug, and of course my sister, Brynn.

The radiation doc should be "mapping" my radiation treatment Wednesday, then I'll start treatment shortly thereafter. The plan is to have six weeks of radiation along with one chemotherapy medication. Again, this is only Mon-Fri and I don't have to stay overnight at the hospital. After that, I'll have four weeks off then I'll start my chemo cycles. This part is 48 weeks long, barring no complications or setbacks. There are two cycles, A & B. A requires a one-night hospital admission three times a month and B cycle requires a two-night hospital stay three times a month. The A & B cycles sort of rotate, though there are more A cycles than B. Not too bad, I think I can deal with it.

They're going to test my hearing frequently to be sure both the radiation and chemo are not damaging it too much. It may be affected somewhat from my treatment.

By the way, for those of you who know that my dad had cancer, this is in no way related to his cancer. Surprisingly, I did not inherit this from him. We just both happen to have a stroke of bad luck! That's okay, I'm tough like my daddy and I'll beat it too.

Last night I spoke a couple words to my Daddy. I said "I want" and tried to make out the word "Mommy". I am making progress every day... moving my arms and legs more and more. Now if I could just get this swallowing thing down...

Ethan is our beautiful five year-old boy.