Updates

Today at clinic, Nathan's doctors took him off of all of his medicines except one that he'll have to take for about 6 months!!!! This is so exciting for us!!!!!!

We're looking at either January 27th or 28th for his scans to see if he's in remission. The doctor said based off of his past history it's looking good.

Nathan enjoyed a wonderful Christmas!!! The doctor said in a few months we can resume any activities he enjoys!!!! He can also return to church in a few months!!! Yay!!! Though I'm not sure how he's going to act because he's been out of church so long, he's not really used to having to sit still.

I'll post more updates toward the end of January after the scans!!!! Remember no news is good news :-)

Update

Hi!!!

Just a quick update.

Nathan ended up going for Chemo on Tuesday. I told the doctor to give him every anti nausea medicine on the books and it helped. He didn't throw up as much this time.

He needed a blood transfusion on Wednesday but was able to go home Wednesday evening.

His floor had a huge Thanksgiving dinner for the patients and their families. It was really nice!!!

Nathan is recovering pretty good this time. He's been pretty tired but he's home and we're thankful for that!!!!!

One more hospital stay left!!!!! Next month will be it and then he'll get his last scans in January!!! I'm praying they come back clear! It's been a llllooooonnnnnngggggg year!!!!!!

We had a wonderful Thanksgiving at home. Sam and I put together a nice dinner, a lady from church contributed to it with the BEST macaroni and cheese you've ever eaten. LOL secretly when we found out she was gonna cook it for us we were pretty glad that no one else could come so we got it all to ourselves (greedy I know).

I'll update more later as I'm kind of in a rush. Keep a friend of mine in prayer. I met a new mother at the hospital last week who's 9 month old was just diagnosed with leukemia the week before.

My heart goes out to this husband and wife. I remember all too vividly the first time we heard Nathan had cancer. I talked to her for quite awhile. They have 4 children all together ages 5 and under. They're a WONDERFUL family. Please keep them in prayer because they have a long road ahead and they're just starting out.

Leukemia is different from Nathan's cancer, thankfully Nathan got to come home a lot but Leukemia patients sometimes stay months at a time and for this little guy and their family it's no different, but please pray because as soon as flu season hits the siblings won't be allowed at the hospital (This happened to us last year with Peyton). And it's really hard to be separated from your other children to take care of one, it puts such a strain on the family that most people just can't understand. Anyway, she's been heavy on my mind so I'm asking everyone to take a minute and pray for her.

More Quick Updates

Nathan was supposed to be admitted this week for chemo but his counts are too low for admittance and he's had some mouth sores so he's getting pushed back to next week. We knew there was a possibility of that and at first we were going to try to prolong him until the week after Thanksgiving if that was the case but then we changed our mind and decided to go ahead with him being admitted next week.

We're praying he'll be able to come home Wednesday and not miss Thanksgiving but even if he doesn't that's ok too, we're not too concerned with the holiday at this point we just want to keep him on track with his chemo as much as possible!

Other than that he's acting great. He's been playing, jumping singing etc!!!!

Updates

Just a few quick updates.

Nathan has gone an entire week without throwing up!!!!! I'm very happy about that. He's been battling a viral infection, but hasn't spiked a fever and has been able to fight it at home.

His mouth sores returned :-(. I noticed him walking around sucking his mouth in a lot so I called him over to see what was going on and inside I saw new mouth sore. He's been on a preventative medication for awhile now and it had been working but he just "broke through" as his Oncologist called it so they started giving him a pretty high dose of medication to knock them back out and it seems to be working.

I just took him in to get blood counts today and found out his counts are extremely low. If he gets a fever right now it'll be a big deal. I already have a sign on the door banning literally everyone from stepping foot in the house except Grandparents and I've even laid strict guidelines for them to follow.

We're so close to the end of his treatment (in January) so I'm just trying to get him through without any serious infections.

Remember I told you that Nathan had cast on his feet so that he would learn to not walk on his tip toes? He wore them for a month and then they came off and finally he started walking flat. Well recently he started easing back up on his toes again we noticed. His Physical Therapist came today and looked at him.

The cast stretched his tendon so technically he doesn't have to walk that way anymore. Before he'd been walking on his toes for so long that his tendon had shortened and he really couldn't walk flat but now that's not the case it's just that out of habit he's going back on those toes. Truthfully we decided we really don't care about toe walking anymore right now and his PT, who is fantastic, agreed. In the grand scheme of things toe walking is an extremely small problem that we're not going to put any more time into at this point.

Speech Therapy is still going good. Nathan is doing a lot better with his pronunciation and I'm really proud of his progress. He's still working on single words. It's such a long process and I've dedicated myself to learning everything I can about Apraxia so I have a ton of resources that will help him too.

Quick Updates....

Nathan stayed in the hospital for chemo this past Monday. This is the roughest time I remember him having. He threw up a ton in the middle of the night, into Tuesday afternoon.

He's home now. He didn't throw up any on Wed. but just got really sick again today and has been throwing up and just begging to be cuddled.

He did get to make a wish through the "Make a Wish Foundation" and will be going to Disney World next spring if all is well. It was so cute, as soon as the volunteer arrived he announced "Mickey Mouse" to her before she could even sit down lol so Mickey Mouse it is.

He got his cast off his feet and no longer walks on his tip toes. We'd gotten so used to him walking on his toes that it still seems weird watching him walk flat. All the while he never once complained about the cast. Nothing really seems to phase him and I'm so thankful for that.

I'll continue to update as things come together. If all still goes according to schedule he'll be wrapping up his treatment the first week of January 2011...

About 5 of ya'll have called me and believe me I got the messages, I'm going to call back soon, these last few weeks have been pretty busy but as soon as I get a break I'll be calling!

God Bless

Update

Nathan's scans were cancelled today because one of the machines were down. It would've took too long to get it back up and running so his tests have been rescheduled for this coming Friday instead.

Updates

Hi everyone, here's some really quick updates.

First my friend's little guy has been moved out of the ICU!!!!!! Thank you all for your prayers, he's still in the hospital but he's out of the ICU and we're happy about that!

Nathan got his results back and well we're seeking a second opinion right now on what we should do moving forward. I'm not really going to share them on this blog not because I don't want you to know but they're quite confusing and I don't want to leave you all thinking, 'huh?' I'll just say they were half good and half what we didn't want to hear.

We still trust our medical team but it doesn't hurt to seek an outside opinion which is what we're going to do. Right now Nathan is set to undergo testing again in 4 weeks instead of the standard 15 so his medical team can keep a closer eye on things.

Last week was pretty confusing and honestly kind of hard but again moving forward we're trusting God with our son and truthfully not worrying about it. All four of us are together right now and that's really been my focus lately and what I truly care about.

There's a song I just heard recently that's kind of become my motto. I'm not a country western fan but I've fallen in love with the lyrics of the below song. Now don't get all worked up when hearing it because right now Nathan is still doing ok but even before his results I've kind of taken on the below song as our household anthem and we've just been living life lately. We're limited in where we can go and what we can do but we live it up anyway!

More Posts Coming Soon

I promise to update soon. We've been extremely busy lately, everyday there's another appointment. Nathan goes to two therapy sessions along with chemo and eye appointments, dental appointments and we have to somehow find time to fit in a hearing test. And we also to work intensely with him everyday because of the Apraxia and I'm dedicated to squeezing quality time in with Peyton daily, making sure she's not left out in any way, so by the time I have a moment to blog I'm honestly exhausted, plus Nathan hasn't been sleeping well which is keeping us all up at night (except Peyton). But I do have a lot to share so as soon as I get time I'll write more!

God Bless!

Quick Update

This is going to be extremely messy cause I'm typing quickly.

Nathan has to get a PET Scan on the 16th. We found out that although a portion of the tumor hasn't shrunk some of the cells have died. This PET Scan will determine how much of the tumor is dead.

Still no surgeon will touch it and the doctors said that the tumor will probably never shrink completely (we thought it would). But rather it stands a better chance of dying. If the cells all die then that's good, the tumor will then be like a huge scar but it won't be active cancer anymore. So hearing that there are dead cells in the big part is good news.

Right now Nathan's dealing with so many side effects. He doesn't produce tears anymore in his left eye and probably never will again and he still has a lot of swelling in his face. His new thing is nightmares, he has them every night, so none of us have been getting much sleep which is why I'm so behind on the posting. He goes through phases where he handles his treatments well and times when he gets fed up and lately he's been fed up and I really don't blame him. He panics every time he sees a needle now, when he used to take it with stride. For those of you that don't know, most of the time he gets a needle put into his metaport he doesn't flinch because it's numb but he goes crazy just seeing needles now a days.

As for the rest of us, we're still just taking everything one day at a time. These last two weeks have been pretty low for me, I just want Nathan healed so bad and having to keep him so isolated and stay so isolated as a family really gets you down after awhile, especially for our family because in the past we were always on the go. A high point was last week when we got to go to the zoo, they had a special night just for children with chronic illnesses and their families. I'm trying to stay positive but I have so many people that ask "can I bring so and so over to play?" And I have to say no. It's very rare that Nathan is allowed to be around people such as on memorial day and we literally jump at those chances when they arrive but they're very far and few in between and even when we have them Sam and I always have to look out for infection because we know just how serious a little infection can be and every time he's exposed there's a risk. Those days are so special but bittersweet because we're reminded of how much Nathan is missing and how much we're missing as a family.

Despite everything I wrote above, he's been pretty active - still playing a lot, especially with Peyton. I just wish I knew what his dreams were about. I'm praying hard over this upcoming test, I just want to hear that a TON of cells are now dead. I'm not sure when we'll get the results from the test but will let you all know in due time.

Peyton and Sam are doing great!

God Bless

More Updates

Nathan had to go to the ER on Saturday because of a fever. He'd been nursing this fever since Friday and though it was mild it wasn't going down so he had to go in and be given antibiotics. Friday morning he started out playing and happy but around 6:30 pm Sam and I noticed he was starting to lay around so we went and picked him up and took his temp. We called his doctor and since it was a low grade fever (99.5) they said to just keep an eye on it. So he slept well and in the morning he was still laying around and we took his temp again and it was up to 99.9 so we called and were told to bring him in and so we did.

Thankfully he got to come home that evening and Sunday he kind of relaxed around the house and his fever was back down. Monday he woke up in a great mood. It rained all day so we stayed in and played. It was Nathan, me and Peyton and we didn't watch TV we just played and had a great time. He'd slept very well the night before. I let him and Peyton get a three hour nap and before bed I realized that he hadn't cried or fussed once. The same thing today and this was despite the fact he has huge painful looking mouth sores!!!! Still no complaints from him. He took his medicine and went on about his little business! Such a trooper! I'll update more as things are constantly changing!

Dear Lord,

Thank you that Nathan's fever didn't get too high and that the antibiotics were able to quickly get it back under control with no side effects. Thank you for his good days when he's able to enjoy just being a three year old. And thank you so much for Peyton who remains so constant despite everything going on around her. She really knows how to keep Nathan on his toes unlike me and Sam and I know Nathan enjoys her little company :-)

In Jesus Name
Amen