14 out of 30

James has been doing pretty well. He is halfway done with treatment which is exciting. We met with Dr. Grosshans today, he thinks James is doing really well. He has a slight sunburn on his head and now starting to go down his spine. We were told to put aquafor cream on it 3 times a day. He does have some redness by his right eye that they are concerned about. He had us draw with a pen around it so if it spreads they think it's possibly an infection and will need to put him on antibiotics. He has also lost a little weight so they increased his feed to 80mls which will hopefully chunk him up a bit. He doesn't have much of an appetite but that could be because the play room is right by where we eat so he just wants to go play. I'll be glad to get him home and try to get him on a normal schedule. He is pretty much walking everywhere around the housing area. Sometimes he will get tired and ask to be carried. He is still playing and having fun. Tomorrow Zoey and I go back home and I hope he will be ok. Having his little sister here has definitely helped with a lot and he always has someone to play with. It will be good for both of us I hope. I haven't been away from him for more than a few hours since the day he went in the hospital last year so I'm not really sure what to do with my three weeks with just Zoey and I. I will be so glad when the boys come home and we are done with hospitals and treatment for a while. I just pray we never have to do any of this again.

10 out of 30

We are almost half way done woohoo! James is doing well, he started to loose his hair today. We knew it would probably happen but I was kinda hoping it wouldn't. He has a hard time sleeping, which they said is normal. It takes him about 2 hours to fall asleep at night. They only nap he gets is when he's out for his radiation. Hopefully his sleeping pattern will return when he's all done. Other than that he doesn't have any side effects. He has to meet with the nutritionist next week to keep his weight up. We did meet with his oncology doctor today. James' hemaglobin was a little low so they will wait and check it again on Friday and if it's still low he will get blood. We don't really care for the oncology team here. They just make us feel like they really don't care. I'll be glad when James is back under doctor Li's care. James' walking keeps improving everyday. He really doesn't need much help walking now. His balance is still a little shaky but I'm sure it will get better. He still plays all the time. When he's not doing treatment you will find him downstairs in the playroom. He's probably in there a good 2-3 hours a day. I keep thinking well he's playing so much that he's bound to get tired and go to bed quickly but he doesn't. This is my last full week with him, Zoey and I go home next Wednesday. It's very hard for me to leave him since I've been with him everyday since this whole thing started. I just hope Sam can remember everything I tell him. We are so grateful for all the love and prayers that have been given.

5 out of 30

Well James has finished his 5th day of radiation, only 25 left. We had our weekly visit with Dr. Grosshans today and he said everything is going good. James had MRI scans a couple weeks ago and they looked good. No cancer cells still. I guess the doctor was a little worried because James hasn't had treatment in 3 months so he thought something might have grown back in that time. Thankfully James is still cancer free. He has lost a few pounds since doing radiation but I think it's mostly because he has to fast from midnight till about 2:30 in the afternoon. He eats quite a bit on his own though so hopefully we can get his weight back up a bit. They said his ears and forehead will start to get red and look like a sun burn. Also he will be getting a stronger dose of radiation to his spine where the tumor cells slugged down. He is still playing and having a good time. He's kind of getting tired of being here and ready to go home. Only one more month poor guy. He loves playing with his sister and being "the boss" of her. We hope he continues to do well and are so grateful that he still has no cancer cells. I hope and pray everyday that it will stay that way.

Start day

Today was such a long day for us. James started his Proton Radiation treatment and it was a little confusing. Hopefully we will get the hang of this. James' appointment was set for 12:30 and they ask you to be their 30 minutes a head of schedule. Well after about 30 minutes after his scheduled appointment time they came and told me that they were running 40 minutes behind so he didn't actually get in the room till 1:40. James also has to be sedated every time he has treatment because he has to stay perfectly still. Which means he cannot eat or drink 8 hours before, so pretty much no breakfast and today no lunch for him. I felt so bad because he was so hungry and it didn't help that they were so far behind today. Usually they said this does not happen but this morning there was a big thunderstorm and it messed up the machine or something so that put everything off. According to the nurse they don't get behind because a lot of there patients in the morning are little kids who are fasting so if you come late they move you to the end and take the next person. Anyway 2 hours later we finally got to go back to the "hotel" or the Ronald McDonald House. We received his schedule for all his treatment and they are all at about noon. It stinks for him cause he can't eat but because he has so much to radiate they have to change things on the machine so he's last of the kids. He was super upset also when he woke up. It took him a good hour to stop screaming and thrashing around. Hopefully it's not like that every time. Other than that he has been enjoying playing in the playroom and relaxing. We took the kids to the zoo on Saturday and they thought it was pretty cool. James' last day of treatment is August 5th but Zoey and I have to leave in three weeks. So for three weeks our family will be split. I'm not excited to leave my boys behind but I know James is in the right place and will be taken care of.

Finally getting started

We've been here a week now and all we had was his consultation. Today we finally got to start some of the pre-treatment stuff. We met with a lady to go over Anesthesia and it really only took like 10 minutes. Then they sent us to go get some blood work done on James to make sure his counts are all ok. The hospital here is huge! I don't think I've ever been in such a big busy hospital. Everyone kept telling us how great a hospital it is and they must be right because there are tons of people here. I haven't seen too many kids here though. The whole day took about 3 hrs and we were really only with a nurse or doctor for maybe a total of 20 minutes. Then later this evening we finally checked into the Ronald McDonald Housing. It's very nice and they pretty much provide all your meals except breakfast. Probably because most people have appointments early in the morning. James calls it our "hotel". James has his simulation tomorrow and then Friday he has his MRI. He's also supposed to get set up with the clinic here at some point but they haven't done that yet. His doctor from Mesa called yesterday wanting an update and when I told him nothing was really going on he wasn't too happy. He said he would take care of it, so who knows what that means. James should start treatment next week and then be done by August 1st. We miss home quite a bit but are still glad to be on this little adventure as a family.

Houston

Well after 2 days and 20 hrs of driving we made it to Houston yesterday. We met with the MD Anderson Cancer proton therapy team this morning. They went over the basic plan for James. So he has to have an MRI, X-ray and meet with the oncology team and then next Wednesday he has his simulation where they pretty much go through the whole process but don't give him radiation. Then the week after he will start his Proton therapy for 6 weeks. So it's 8 weeks total, the nice thing though is that once he is done he can just go home he won't have to stick around. He will loose his hair again and they went over some long term side effects that he might get.  After the meeting we talked about it and we still feel like it's what's best for James. The chance of the cancer coming back is just too high for us to not do anything. The only thing that stinks is there is a good chance I will have the baby without Sam. So since he isn't starting treatment for about 2 weeks we are just gonna try to do fun things before James starts feeling bad.

Upcoming events

Sorry for not updating in a while we've had lots of stuff to think about. James is doing really well his counts have been great. Having a port is so nice! We don't have to stress about changing it or worry about it getting wet. We've had a lot of thing go on the last few days. We got a call from a doctor over at the MD Anderson Cancer Center in Houston and they want to start Proton Therapy on James pretty much right away. Sam and I have been praying about this for a while. Originally they said that we wouldn't have to do anything till August but they want to start in a week and a half. So we've been scrambling to figure out all the details. We know this is the best option for James right now and so we are trusting Heavenly Father and the doctors that it will all work out and be ok. Other than that James is still doing all his therapy and getting nice and strong. He has fallen a few times and hurt himself trying to walk. Overall though he has improved. One of my cousins introduced me to a lady whose son has the same type of cancer and she added me to this support group. It's been really nice to read stories of people who are going through the same thing. It's nice to read all the survivor stories because it gives me more hope that everything will be ok.