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