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Hi, I am an adorable, blonde, blue-eyed young man. I had Medulloblastoma - cancer. I had a successful resection of my brain tumor, completed six weeks of radiation, 15 months of chemo, and countless surgeries and therapies as the result of treatment effects. These entries journal much of my treatment and progress. I have come a long, long way and I am doing awesome today! Feel free to read and share my story.

Friday, October 8, 2010

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

3 comments:

  1. Hello All,

    Thank you for the updates. I am glad that you are enjoying cooler temps. The heat can get old but so does the cold here in Ohio. I think the G tube would be better...I am sure Ethan would be happy to be free of the NG tube issue. I am glad that the therapies are going well. I hope he rebounds from his last treatment quickly so he can strengthen and enjoy his 3 week break. I am glad that Cole is nearby...I wish that I could be. Hope Mom can get out for a visit very soon...I know that is the plan. She shared some awesome pic of the kids with us...they are just so grown up...my boys are upset that they have not seen Ethan and never have had a chance to meet Brynn...they have fallen in love with her just by her pics. Miss you all...love and prayers to all.
    xoxox
    Diana

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  2. You're in my prayers sweet boy. (Friend of Laura )

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  3. I am so glad to hear you have help with Cole. That is huge I am sure. Especially since Ryan is going to be be busy with his training. I am sure another adult besides Dr's is a welcome thing. I wish I were closer. :( I am sure Ethan is looking forward to a 3 week break! Hopefully once the g-tube is in, I am sure he will have more success in trying to eat. I can only imagine not wanting to swallow after a tube has been present. It sounds like the move was good, and that is a huge blessing. Wishing you more blessings everyday. You are all in our prayers EVERYNIGHT. Miss you. Love you. Les

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