Made it home just in time.

We got released shortly after six pm on Wednesday. YAY!!! You don't realize how much you enjoy the simple pleasures of life until you are deprived of them. I cannot tell you how thankful I was to be home last night.

Honestly, on Tuesday night I began to wonder if we were ever going home. Although he had been doing better, he seemed a little wiped out again that evening. I started worrying his temp would go back up and we'd sink again. However, by morning my fears subsided and once again he was doing great. He did have a little complication with one of his antibiotics while we were there. A slight allergic reaction, but nothing that came on sudden and nothing a little benedryl didn't take care of. They never figured out what the problem was but the doctors and I think it was the bug that Ryan and I had. Since his counts were so low, it effected him much more severely. Nevertheless, we really had a lot to be thankful for today.

Anywho, we are soooo happy to be home and he is doing awesome. He's finishing off some turkey as I write. Yes, at 12:46 am. We are night owls! Uncle Cole came over today and helped me cook, or rather, I helped him cook. It was pretty good for a couple vegetarians! However, Ryan failed to remark that the turkey was the best he's ever had.

Thank you once again for all your love and support. We had a great TG today, hope you did too. Enjoy the rest of the holiday week.

Love,

Nikki

Feeling much better:

Ethan was a little cranky this am, but we're all tired of being in the hospital. He's perked up a great deal the last couple hours and is up, moving and tickling Brynn and I.

We haven't had much sleep. Our nurses the last two nights have been noisy. However his counts are slooowly inching up. Hopefully we will still be released by Wednesday. E hasn't had fevers for two days and, although he is nauseous,he is vomiting very little. Nor, have any of the cultures come back positive. No diagnosis, but he is getting better. I feel good too now, just tired.

So, I think we're in the clear from this scare. Thanks for all your messages, love and support.

Nikki

Doing a little better

Just heard that his white counts and hemo are holding! This means we are no longer on the downward slope from chemo. However, they still don't have a diagnosis. Flu came up negative. No cultures have grown back yet with infection.

Ethan looks waaay better this morning. I think the fevers are lower and less frequent too. He should be on the road to recovery. Now let's hope they'll realease us before Thurs!

Until later...

Rough night, but better day...

He's snoozing now, while getting a blood transfusion. He had some horrible shakes in the night, but he was so delirious he doesn't remember it. He's still feverish today, but is in good spirits.

Looks like we could be here through Thanksgiving, but we're hoping for an earlier release, obviously. No word on whether it is just the flu or a port infection. As soon as we do know, I'll post.

Pray and think positive for our little guy.

-Mom

Back in the hospital

We just can't get enough of this place. Ethan continued to have a fever all day and was on the cusp of a mandatory ER visit so we called the docs after all. As we suspected, they recommended we bring him in to be sure he does not have a serious infection, like a port infection. Unfortunately, when we got here we had a nightmarish time trying to get his port to work. After multiple pokes, and a couple hours, it finally started working. It was another horrible, traumatic experience for Ethan. He is now watching a Thomas movie, trying to relax. He seems to be very relieved.

Now, we wait a couple hours for the initial results of the blood work, but will know much more in 24 hours, due to the culture process. They've started the antibiotics and tylenol. We will be here for 48 hours,at least, for monitoring. Hopefully, it's nothing serious and we don't have to stay longer.

So folks, pray for our little guy that he recovers comfortably and soon. I'll post again soon.

Now, for a little rest...

Check up after 3rd Round of Chemo

We went in Thursday for Ethan's counts and Ethan's out-patient chemo (Vincristine). After I didn't hear back from the doctors regarding Ethan's counts, I called Friday morning and found out he needed a platelet transfusion. His ANC has dropped to 400 and his white blood cell count was pretty low.

We went in yesterday for the platelet transfusion and have been hanging out since. Unfortunately, this morning Ethan woke up with a low-grade fever. Ryan had a little bug on Thursday and it seems Ethan and I have contracted it. We just feel kinda achy and Ethan's a little feverish. As long as his fever remains low, we won't have to take him into the hospital. PRAY he pulls through. This is like the worst time for him to get sick with his ANC being low.

He's a little trooper though, so we"ll remain positive.

Other than the above, there is nothing really too new to report on. He had a great week and has been fairly active. He also had a great time with his Grandma and both he and Brynn were sad to see her go.

I'll post again soon with any changes. We are due for another check up Wednesday.

We hope you all have a relaxing weekend.

3rd Round of Chemo

We went in Thursday morning and got out around 8:00 on Friday night. We were happy we didn't have to stay two nights. Things got off to a late start, as usual, but Ethan handled the chemo like a pro so we were released without any complications. I hear that kids usually have to stay a bit longer for hydration reasons but Ethan was well hydrated and had no problems urinating. Since we've been home, he has been a little nauseous, but is doing better than the last two rounds. This is a different mix of drugs though, so that's probably why. Every third chemo cycle the drugs are different from the first two.

My dad popped into town for a few days before Ethan went in and we all had a good time exploring the town together. Ethan and Brynn got lots of new toys and Grandpa got lots of new hugs! We were all sad to see him go.

Right after we dropped him off, Grandma Black flew in. Now the kids are having some more fun hanging out with Grandma. Today, we went on the train. It was kinda chilly. We're not used to 60 degree weather!

As a whole, Ethan is doing really well. He talks all the time now and his voice seems to be getting louder and louder. Sometimes it sounds just like it did before surgery. His lips are coming closer and closer together, but not all the way there yet. He has a little more facial expression and, although it is very gradual, it is starting to come around. He definitely has off days. It seems like there is no explanation for them but he has been through two surgeries and chemo all in a very short time period, so that's my explanation. Obviously, there is an accumulation effect from the chemo too. His anxiety really peeked after the peg tube surgery, but I think and hope it is starting to level off now. He continues to work hard at all his therapies and we see progress in every area. He likes his new posterior walker, as it supports him quite a bit better. He can walk with it unassisted for short bursts, but he still needs a spotter.

Despite his illness and treatments, he sure is a trooper and seems like a happy little punkin. We are so thankful he has come so far and is doing so well.

He has an MRI and peg tube modification scheduled on December 7th. We're obviously curious to see if there are any changes in his brain and with his right-sided facial atrophy. We are also excited to not have a tube hanging out of his belly. They will now replace it with a button-like access that is flush to his skin. It will make everything so much easier. He will not have to stay the night, thankfully. Until then, we'll continue to check in with the doctor on Thursdays for out-patient chemo and blood counts.

We wish you all a happy holiday season and thank you for all your positive thoughts and prayers.

Love,

Nikki