Update on Ethan's every day life

I thought I'd give an update on Ethan's progress and what his daily life is like.

He still primarily feeds through a tube (a hole in his stomach). He gets two cans throughout the day (four separate feeds) and then two cans on a slow drip (with machine) overnight. He can eat and drink by mouth but there is really only 2 weeks out of a cycle when he feels well enough to do so and it's still not enough. We suspect he'll do fine on his own once he is done with chemo. I believe they told us they will wait several months before they remove the tube post treatment.

He doesn't quite walk on his own yet. He can hold himself up just fine but he's wobbly. Some days are better than others, and, as mentioned above, there really are only 2 good weeks (of a chemo cycle) of physical activity. In those time periods, it almost seems like if he just had a little more time he could walk on his own. We hope to see him walking on his own soon after the chemo is over or even before. He does pretty well with either of his walkers and scoots around the house all the time. He needs assistance going to the bathroom. He can't sit down on the toilet on his own or stand up, but he is making progress with his clothing. He is relearning to dress himself. However, this tires him easily. His dexterity is not the best yet either. Buttons are a pain but he does okay with zippers. His writing is getting much better, but he's switched to being left dominant from right. He does really well in home school and he still has a an awesome memory!

When he gets in his Powerwheel Caddi, he has a great time. No problem steering, pushing the pedal, turning, etc. Great combination of hand, eye coordination activity.

He usually takes an afternoon nap but not always. He sleeps fairly sound, thankfully. He has a tendency to talk in his sleep, but he did that prior to all this.

He doesn't have a lot of home meds. Just the zofran which helps with his nausea. He takes a dissolvable pill under his tounge every six hours. He only uses this for 2-2 1/2 weeks at a time, as the nausea eventually subsides and he stops vomiting.

On an A cycle (six week), he checks into the hospital and gets Cisplatin, Lomustine, and Vincristine overnight at the hospital. If all goes well, it's a 26 hour stay. When we get home, he isn't doing the hottest but really starts sinking after five days. He starts puking right away, due to the Cisplatin, and he vomits continuously for two weeks. That part sucks. I'm better at his feeds and avoiding extra vomits, but you can only avoid so much. One week after his admit, on Thursdays, he goes in for Vincristine which he gets at the clinic and doesn't have to stay overnight. This stuff makes him extra pukey, so Sat and Sun we are guaranteed a little extra! His counts are always low at this point and he usually will need a platelet transfusion. Then, we typically go back in the following Monday for a blood transfusion and another platelet if needed. Then, again, two weeks post admit, he will get another shot of Vincristine and more blood and platelets depending on counts. After that, he typically starts the climb back up. Of course, there are unplanned visits in there some times. Infections, fevers, flu, etc.

On a B cylce (four week), he goes in for one night as well and gets Cyclophasphomide with Mesna and Vincristine. It seems like it hits him harder faster, but does not last as long. He does not vomit near as much but his counts still sink and he needs transfusions. He also gets another Vincristine one week post admit.

Every time he gets meds or needs his counts checked he has to get his port accessed. This is a needle going into a port placed in his chest. HE HATES THIS! He has a lot of anxiety because of this. His is not always reliable either, sometimes they have to poke him 2-3 times. Sucks that these little kids have to go through all this, but it is all part of the life saving process.

Here is his treatment plan:

Surgery 5/4/10

June 2010: 6 weeks of radiation with Vincristine

4 weeks off

Chemo Cycles begin: AABAABAAB

He only has two cycles left!!!!!!!!!!!!!!!!!

Obviously, we have seen a lot of improvement. The wearing off of the effects of the radiation has helped tremendously. PFS is much better too - from practically being paralyzed and speechless to today it is unbelievable! However, the accumulating effects of the chemo are taking their toll. He gets neutropenic quickly now. Thankfully, we are near the end!

He gets Speech therapy 2-3 times a week for 30 minutes. He has PT & OT two times a week for 45 minutes a pop. He enjoys his therapies... LOVES MS. AMANDA, his physical therapist.

He also does homeschool twice a week for two hours a pop. I thought he'd be behind since he started recently, but he does great. He really likes his teacher too.

We still go to the zoo and museum often. He goes for a ride in a double stroller with his sister daily. I think we all still have had a great year together, despite it all. We are really looking forward to the years to come and Ethan feeling strong and healthy.

EVERYONE we know has helped us tremendously and we are very thankful. BAMC has been a great hospital and I love Ethan's doctors and nurses. I feel like they are all my friends, not just Ethan's medical staff.

My brother, Cole, jokes that he doesn't help much but he really does. He is always there if I call. He's a great Uncle and entertainer to the kids. He keeps me fairly sane too. I think the last six months would have been a lot lonlier and harder without him here - THANKS COLE! <3

Okay, I'll close here. That is sort of daily life... and yearly...

Thanks again to all of you.