More surgery?

It's been a good month. Busy, but good. We did the neuro testing, iq tests, etc. We are still waiting on the results, but preliminary confirms some real strengths and some weaknesses depending on the area. The doc said his memory is very good, however, and seems unaffected.

We also went in for the plastic surgery appointment and, surprisingly, they seem very interested in facial reanimation. I suspected from my research that it would be too late and extensive to revive nerve damage. However, the military docs in Washington D.C. are interested in his case and have requested his reports and scans. It sounds as though they might fly us to D.C. soon to do some nerve testing and consultations. I'll admit, I was taken aback by their interest. It would be a very complex and involved surgery/process but if it could lead to a smile then it's worth a look. We'll know more after the holidays. I'll be sure to update the site as I hear more.

Tonight we met at the Rainforest Cafe on the Riverwalk to receive Ethan's Make A Wish trip itinerary. We take flight in less than 48 hours! Eeeek, I haven't begun to pack!! We are very excited, of course, and very thankful for the opportunity. Ethan picked a week visit to Disney World. Yay, Christmas with Mickey Mouse! Every young child's dream I'm sure. Anywho, our Make A Wish volunteers, Evette and Faye, were really kind and gracious and we are thankful they were assigned to us.

I suppose this is a short one- I could go in to Ethan's recent developments further, but honestly, I'm too tired and have too much to do. I will report that he continues to do very well. He's getting stronger, eating more, and still making progress bit by bit. Again, I'll be sure to report any news on the facial reanimation.

Happy Holidays and love to all.

<3 <3 <3

G-Tube out, lots of walking...

Ethan hadn't been tube fed in over two months so we felt it was finally time to take the mic-key button out. The docs just said to pull it out and patch it and it would heal on its own. It did, the hole had closed by the next day when I changed the patch. He was quite nervous about removing it - it kinda rubs when you pull them out and insert them, but he's very happy he doesn't have it anymore and doesn't have to endure any more replacements. Obviously, he's eating pretty well on his own now. Recently, I've seen an increase in his appetite which is probably attributed to all the walking he's been doing!

Yup, I demanded no more scooting around the house. He could only use his walker at home. He fought it at first, but then seemed to prefer it. Then, Uncle Cole was like - just take the walker with you instead of the wheel chair while you're out and about. I fought it, but then preferred it! The walker is kinda big and I find it a little difficult to watch Ethan and control Brynn while we're out, but it's worth it. Ethan loves taking it out for our nightly walks now and loves to go roam around Walmart, or similar roomy stores. He's doing very well overall.

His eye seems to have centered very well. We were suppose to have a follow up Monday but the office cancelled it weeks ago and I have not been able to get through to reschedule it since then. I'm very irritated about that! I'm resorting to having his Oncologist get his follow up with the eye doc.

We had the CureSearch Walk on Nov. 5th. There were lots of other cancer kids there along with lots and lots of supporters. Many commemorative teams, etc. We belonged to the BAMC Brave, which Nicole, Ethan's nurse, organized. Their goal was only like 2k and they managed to raise over 7k. There are some pretty amazing supporters out there. Some of the big donors were even parents of a patient! Good job Nicole!

Ethan's upcoming appointments consist of the plastic surgery appointment I discussed in my last post, the neuro psych testing, and a clinic appointment - oh and an eye follow up if that office ever gets their stuff together!

School is going well. Ethan and I spend a lot of time together working on schoolwork on the days his teacher doesn't come. I used to have him do it daily (Mon-Fri), but felt I was overworking him, so I cut it down to Tues, Thurs, Fri. It takes a long time to do the assignments online. The math is getting fairly involved now. However, he's probably ahead of the game in some areas, but a little behind in others. I feel much better about how things are going now.

I think that about covers it. Hope you all are well and keeping warm, safe, and happy for the upcoming holiday season.

Thanks to all for your support and love to all!

Neurology Appt. & MRI

Went in Monday to see a neurologist at BAMC. We discussed neuro psych testing to get an idea what his positives and weaknesses are in the educational arena. This type of testing should be a bit more thorough than what the school can provide. I also discussed his aptitude with his teacher and she believes Ethan is very smart and skilled but obviously has some physical limitations along with a delay in response. The delay in response is due to the Posterior Fossa Syndrome.

We also discussed the facial paralysis. Most likely it involves the 5th, 6th, & 7th cranial nerves with some impairment in all but no complete loss of function in any one. This doctor believes radiation was likely the primary cause. However, we've asked just about every doctor and not one can be certain and many have said it was from surgery, CSF pressure, radiation, an infection, a combination, etc. We will probably never know the true and exact cause. Based on my research and doctor input, we're not sure a whole lot can be done at this point to regain what has been lost but we're still hopeful. We continue to do facial exercises and are going to start electrical stimulation soon. Also, we have an appointment lined up with a plastic surgeon just to get an idea what options are out there, if any. To me, this is more or less so we have an understanding of what types of treatment are available now versus what will become available over the years.

On Thursday, we went in for his MRI. They scan the brain and spine just looking for ANYTHING. So far so good!!! He'll continue to get MRIs, blood tests, etc. probably for the rest of his life! Obviously, these will become less frequent as time goes on, but possible late effects will be closely monitored forever!

He is now eating on his own 100%!!! We're very excited about that. Some days he doesn't eat enough or drink enough, but typically that is just one out of five, so we believe all will be on par very soon. He drinks his nutritional shakes by mouth now, so that helps to keep the weight on till his stomach is used to taking in a regular diet. We will be removing the g-tube soon enough! Also, we have the option of removing his port in a month or so too, but we may opt to keep it in due to the fact they will still be drawing blood so often. We'll be discussing it with Ethan to decide.

So all is well.

Next Saturday, we will be doing the CureSearch walk with Ethan's nurse, Nicole Molett. Here is a link if you'd like to support a good cause: http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=481284&lis=1&kntae481284=931E60D8679C4128A63A05501AA27CF9&team=4863534


Did you know "For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents?"

Thanks for all your support, love, prayers, positive thinking and energy. Love to all!

Eye surgery today - hummelshiem

Went pretty well. It was delayed and then longer than we thought it was going to be but the docs said he handled it like a champ. He's a pro at this surgery thing. His doctor, Valentin, said they looked perfectly aligned and there is a 95% chance they will stay that way. We'll know for sure in about eight weeks. So all is well. We're all very exhausted and happy to be relaxing at home now. Thanks for all the prayers. You can see a post surgery pic on Facebook.

Love to all.

Ears, eyes, head -

Went in for the hearing test last week. He did lose a little more hearing in both ears, but nothing drastic. I was actually hoping for some improvement, but we'll take a small decline versus a large one. Next Friday he has his pre-op appt. for his eye surgery the following Monday. He also finally has a neurology appoint schedule for Oct., in addition to, his next MRI on Oct. 20th. It'll be a busy month.

This past Saturday Ethan's right ear started draining a great deal, so we started ear drops on Sunday and confirmed that it was the right thing to do in clinic by Monday morning. They decided not to give an oral and to see if the drops would clear it up - it worked. Stopped draining yesterday. He had no pain or fevers so we weren't too worried. He still has a tube in that ear.

We talked about his g-tube being removed when they take his port out - six months post last round of chemo. That will be really nice, but he has to be eating enough on his own first, of course. He's getting there, slowly but surely.

In all, things are progressing fairly smoothly. It is so nice NOT getting chemo!!!

Love to all.

Doing quite well.

It has been so wonderful not getting chemo and making multiple trips to the hospital! Ethan is doing great. Playing tons and catching up a great deal with his education.

He recently went in for his eye appointment and they decided to go through with the hummelshiem surgery. This will bring his right eye to the center so that he can see with both of them at the same time versus alternating them. This surgery is October 3rd. On Thursday, he has another hearing test, so we can find out what his baseline is post chemo. Maybe we'll get lucky and some of the right ear hearing loss has dissipated. Then, in October, he has an appointment with the neurologist who should be able to tell us what nerves are damaged and causing the facial paralysis. Maybe he'll even have some options for recovery there as well (cross your fingers).

Ethan still has multiple therapies a week and home school. It is all going well. Now, if it would just rain...

Back from our trip.

We had a nice visit to UT and CO. The weather in both states was phenomenal. Of course, it is outrageously hot here in San Antonio right now. We can't wait for the winter to roll around.

Ethan has been doing great. His energy is building and building and his appetite is slowly increasing. He starts home-bound school again next week. We're all looking forward to that. I've got to get on top of supplementing his learning!!

Hope you all have a great week.

-Nikki