All Is Well

It's been about six months since Ethan's facial reanimation surgery. We consider it a great success. He has a lot more movement on the right side. Actually, it's fairly symmetrical with the left side now. We may not even need to go back and do the left side. We will see the plastic surgeons again in the summer to re-evaluate, but at last evaluation, they were fairly pleased with the outcome thus far. It would be nice to not have to go through yet another surgery! With regard to our daily life and moving on from cancer… it's been great! Life is really starting to feel more normal and relaxed. As normal as life can feel, that is. Ethan still sees a physical and occupational therapist weekly, even pool therapy once a week. However, within the next six months, those visits will be cut back just to monitor growth changes and orthotic adaptations. Ethan walks quite well on his own now. He still staggers a bit and has balance and coordination deficits. There is the occasional fall, but other than his orthotics, he does not require assistive devices under normal circumstances. I did, however, recently purchase him some trekking poles to use when we are hiking. I'd like to get him to the point where he is completely independent (no hand-holding) while hiking. At first, he wasn't too keen on them, but after one hike he really started to like them. Ethan has overcome so much and we are incredibly proud of him. He continues to be an amazing inspiration to our whole family. His positive attitude and desire to to be challenged has really helped us all triumph over this chapter in our lives. I am so thankful to have his wonderful little spirit a part of my life. Ethan and Brynn have endured a terrible tragedy at such young ages and together have become more beautiful, sweet and loving souls. I'm so thankful to have them, and their dad, in my life. As life carries on, it's easy to get caught up in the hustle and bustle, but, really, we all have so much to be thankful for and it has nothing to do with our material life.

Surgery Part One Complete:

As many of you facebookers know, surgery went well. Sorry to those who follow this only, although I'm not sure there are any, for not updating this quicker. Surgery was about ten hours but all went well. Ethan was in the ICU for 3 days only and another couple nights on the peds wards before being released. It wasn't until he was released that we ran into a little problem. His cheek filled with fluid and became very swollen. However, at that point, the doctors were confident the build up and swelling would subside without any intervention. After five days or so, it did! He still looks pretty banged up, but he's feeling really well. In typical Ethan fashion, he required few pain meds and hardly complained. Our little guys is a champ! We do not expect to see any twitching for 2-3 months. If it begins, we will know the surgery was a success and we can schedule round two for the other side. Thankfully, the eye surgery is complete so he will not have to repeat that again. The eye surgery so far seems to be a success as well but there is so much swelling we won't know that for a bit either. Overall, we are really thankful for how things turned out and are wishing for the best in the future. Thanks and love to all who support Ethan!

Facial Reanimation Surgery April 12th

It's been quite some time since I gave an update. Ethan has continued to make amazing progress. He is now walking without his walker!!! He started this a couple months ago, but now is much more brave and manoeuvres around often without holding onto walls or hands. He is still getting stronger and working on his balance but he has come such a long way. He enjoys his local school a bit more now and is able to handle the coursework much better too. It was a bit of a challenge coming to the new school in WA, but he is finally comfortable and has adjusted to the work load. We have decided to move forward with facial reanimation surgery and his first surgery is right around the corner! It's a pretty extensive surgery which takes approximately eight hours to complete. As many of you are aware, Ethan is pretty much paralysed in the facial area with a little more movement on the left than the right. To keep his eyes lubricated, we give eye drops hourly and insert gel overnight. At Seattle Children's Hospital on April 12th, the surgeons will perform surgery on his right side in an attempt to create a smile for him. They will remove a small muscle from one of his legs and transplant it to his cheek. Obviously, after being paralysed for almost three years, his muscles atrophied enough that they are non-existent. Thus, they will take one from somewhere else and reactivate it. Then, they will access his "shrug your shoulder" nerve from behind his ear, and use that to re-innervate this muscle. It may take a couple months before the first noticeable twitching begins. At that point, if we see that it has taken, we can schedule the same surgery for the opposite side of the face. The surgeries will be about six months apart. In order for Ethan to create a smile, initially, he will shrug his shoulders and when he does he will smile. Overtime, however, his brain should be able to retrain and differentiate between movements. He may also have lid weights placed into his eye lids in concurrence with one of these surgeries. They would also take a small tendon from his wrist and place it under his eyes to create a sling to help with the closing of his eye lids. This may not completely resolve this issue, but should create a lot of relief and require much less lubricant. We are still gathering opinions on whether or not we should move forward with this procedure now or wait a few more years. Eventually, he will have this surgery done it's just a matter of when. That pretty much sums it up. Please keep Ethan in mind next Friday and send him tons of love and positive energy for healing. Like I mentioned, it's a very long and extensive surgery so please pray for our little guy. I will post post-surgery updates. Thank you for reading and your continued support. Love, Nikki

Fall is just about here and school already is- changes, changes, changes:

Summer was great, but it's school time now... Ethan started 2nd grade last week and I think this year at Carter Lake is going to be much better. He has a new para and teacher and he seems to like them both a lot. Ethan is still going to physical therapy a couple times a week and really, really enjoys his therapist. The orthotics are working out great at stabilizing him as well. Unfortunately, he hasn't taken to using canes. He might just bypass them, but his confidence about walking independently is more of an issue than the actual physical feat. Physically, he's doing awesome and we can foresee progress, progress, and more progress. His MRI scans were all clear and all else is well. I don't update this much anymore, as most friends and family members get verbal updates if they need them. However, if you're a random person looking for information because you have a loved one who has gone or is going through something like Ethan, feel free to message me if you have any questions. Because of the type of treatment Ethan has had, it doesn't just end when chemo and radiation are over. He'll continue to deal with and work through changes and challenges probably for the rest of his life. Yet, he is still a happy and very wonderful little boy. We hope to continue this pattern of growth and happiness for him. Thank you All for your support through this journey. Ethan is doing amazingly well and each of you had a part in his recovery. Sending your love, positive energy, and prayers are a big part of why he has overcome so much! Love to all, Nikki

*Working on Walking*

We've been here in WA a few months now and have accomplished a lot. Ethan just wrapped up first grade and is enjoying summer time. While it's not quite sunny, it's still nice to relax a bit more. He continues to have lots of appointments, despite the fact we're already almost a whole year post chemo!!! He's been meeting with his new physical therapist for just over a month now and it's going great. Right away she noticed he was a bit too bendy (over-stretching) and ordered some orthotics to straighten him up a bit and help him stabilize. They should come in next week. We're hoping he can use those with a cane to get around. That is quite a step up from the big, clunky posterior walker! Also, she's reinforced and motivated me to work with him at home. Low stress exercises like yoga, standing games, or even sitting on the bosu ball while playing wii. Ethan also practices taking steps all on his own (no walls, walker, furniture, etc. to hold him up). He can get about 4-5 steps before he gets a little psyched out by it all but he is doing amazing, of course. I am so happy for him! His new school is really close to us and he's made a few good friends. I have to admit, he's not as excited about this school as he was his San Antonio school, but we're hoping 2nd grade will be better. This upcoming Monday, we go to Seattle Children's Hospital for a second opinion on facial reanimation. Yesterday, he met with the neuromuscular team at Madigan, here on JBLM. They will help to make sure his needs are met in the social and academic arena. It's good to have a little guidance and encouragement on our side. In a couple weeks, he'll go in for another MRI and scheduled blood work. I'll post the results. In summary, Ethan continues to move in a positive direction. Keep our little guy in your prayers, he is doing so well with all your help. Best to you and yours, love to all!

Last minute surgery-

We went in yesterday afternoon for a general surgery consult to discuss and schedule removing Ethan's port. Turns out, a patient had just cancelled an appointment for this morning, so they scheduled Ethan in. We did pre-surgery processing last night, got up eeeaaarly this am, and he was in and out in just a few hours! The surgery went smoothly, the doctors were very kind, and Ethan's already home playing his Wii. Kinda crazy how it was just thrown together, but it all worked out. He now will only have to get blood drawn every three months and will not have to be admitted if he gets a fever for a minor illness. YAY! We are glad it's done. We now have a souvenir, too. We have yet to keep anything left over from his surgeries, treatments, etc. but I thought keeping the port would be cool. Much easier to hold onto than a giant radiation mask. Until next post. <3

Getting Settled

It has been a really, really long time since I've posted. Ah, but finally, here it is. Since the DC trip, we have been busy. Ethan continues to do amazingly well. He practices walking all on his own! Just a few steps at a time now but progress is progress. He also adjusted really well to going full days at school in San Antonio. In late March, our house was packed up and we started our journey to WA. We visited several family members along the way and had a great time. We've been here at Joint Base Lewis McChord (JBLM) for a couple weeks now and we are all settling in nicely. The weather is quite a change. It was high 70s, low 80s in San Antonio when we left and it's pretty much in the 50s here daily. It sure is beautiful though. There are an amazing amount of trees here. Our neighborhood is quiet and beautiful, too. Again, Ethan is adjusting really well to school. Although he misses his friends and helpers in San Antonio a great deal, he's getting to know his new teacher and assistant and enjoying it. He has yet to start up PT again, but should be getting in within the next few weeks. Since he is really getting strong, we feel he could benefit from physical therapy right now more than ever! He has a lot of doctor's appointments on the horizon; eye doctor, surgeon (for port removal), pt and neuro eval, etc. Before we left San Antonio, Ethan had an MRI. They did spot something down in t9-t11, but I have been assured not to be alarmed. It is likely just an enlarged vein. They have noticed it before, without mentioning it, but this time it was more prominent in the scans. They are not concerned enough to order an unscheduled MRI, so we will follow up on it in a few months at his regularly scheduled time. They will order thinner slices to get a better look. I have to admit, I was a little freaked to hear about it when they initially called to notify me of the results, but it was a hectic time (packing and hitting the road) and I was a bit more stressed than usual. However, since meeting with Ethan's oncologist here, I've calmed down a bit and realize they have to inform us of anything they see even if it is little to be concerned with. Ethan's oncologist here doesn't seem to think it is necessary for Ethan to keep his port in any longer either. That will keep him out of the hospital if he gets fevers from common colds, flues, etc. In summary, progress, progress, progress. We couldn't be happier about all Ethan has overcome. Ryan has been busy in-processing and has yet to start his actual job but hopefully will be able to soon. I wish I could say I have done a good deal of unpacking, but I haven't! I keep finding other things to occupy my time... In essence, all is well. We hope the same goes for all of you. Thank you for staying tuned in and love to you all. <3 Nikki