No more!

James is still doing a great job. We took him to clinic yesterday and all his counts are good. They decided he is done with TPN! They raised his tube feed to 45 ml. We are so happy he is done with that stuff. He goes back Thursday and if he's still doing well it will go up to 50. He is having surgery on May 14th to get his broviac switched to a port. We were referred to an opthomalogist to check out James' eye and see if there is anything that can be done. Hopefully we can meet with that doctor soon. It doesn't bother him and we know he can still see but I just want to know what the options are for him. As far as other treatment he won't get any until June or later. We won't get to talk to a radiation oncologist for a few more weeks to ask questions and see what they are planning. We haven't decided if we want to do radiation yet and we aren't going to worry about it till June. Dr. Li did tell us a tiny bit yesterday about it but not much. Right now everyone is just enjoying there time together. James has been doing really well. He tries to "cruise" around all the furniture. When he's not hooked up to his feed he definitely sees how much he can do. We love having him home.

The good and bad...

We took James to clinic today and got some good news and some not great news. His counts are all really great. They are going to turn his TPN off during the day and only have it on at night. If he does well with it, on Monday we can turn it completely off. Then three weeks from that day James will have surgery to change his broviac to a port. We are super excited he won't have TPN or a broviac anymore. The bad news is all his doctors got together and decided that James will need radiation. We don't know how much or how often yet. We are supposed to meet with another doctor to go over everything. He can't start till mid June so we still have some time which is nice. He had all his therapy evaluations this week. He will do PT twice a week, OT once a week, and speech once every other week.

Results

Well James had all his follow up scans this week and yesterday we found out the results. All scans show NO cancer cells anywhere! I did ask them about his spine because they have always questioned if it was scar tissue or tumor. The doctor said it's just scar tissue from where the tumor used to be. We were so happy to hear that James has no cancer. They can't officially say he's cancer free until it's been 5 years. They also said that we won't be doing any radiation right now. They still kind of feel that James is too young so for now he's done with treatment. Now I just have to not think about the "what if" and be grateful for the time I get with this boy. I just want my sweet boy to live a long healthy happy life. They also said once he gets off the TPN we can talk about what to do about his broviac. I told them I would be ok if they wanted to switch it to a port but the doctors are thinking of maybe just getting rid of it altogether. Which is good but then any time he has to go in they would have to poke him. The broviac is just very sensitive and high risk for infection if not taken care of properly. His poor skin just tears when you pull the tape off that covers it. We will see. For now he will continue to go to clinic twice a week and does therapy three times a week. Also they talked to me about banking my baby's cord blood. They said if James ever has to do a transplant again and this baby is a match we can use the cord blood for James. I hadn't thought of that before and I'm pretty sure we are going to do it. I'd rather be prepared then later regret I didn't do it. James is still happy and having fun. It's been quite a challenge to get him to eat just one bite of his food but he's getting better. He's very excited for Easter. This morning he asked if the Easter bunny came yet and I had to tell him just one more day. He loves looking for the eggs. Any holiday that involves candy he loves! I'm so grateful for all the love and prayers we've gotten. I know our journey with this isn't finished but we are just happy to be a family.

Scan week

We took James into clinic today. He's still doing really well. His white blood count was a little lower than last week but it's pretty normal for his counts to go up and down for a while. He has all his scans this week. Tomorrow he has his PET scan which takes 2 hours and then Thursday is his MRI and that takes 5 hours. It's going to be a long week. Other than that he is still having fun at home. No fevers which is great! We love being a family and having our routine. He's very good at reminding us to have story time and then say prayers.

Stronger

We took James back into clinic today and his counts were higher than Monday. He's doing really well and I hope he keeps it up. We are increasing his feed to 20ml now so his TPN will now start to go down. It's going to take a long time to completely get rid of the TPN. They only decrease it by 10 and only after our visits. His MRI won't happen for two more weeks but we aren't in a big rush. They did tell us that they are planning on radiation but when and how long will be determined after his scans. Thankfully with radiation he won't have to stay in the hospital. They said he would just go in get sedated give him his radiation and be done. He starts PT in a week and a half and OT in two weeks. I'm glad we are getting him back in because I think he needs it. He played in the water for the first time yesterday which was interesting. He can't get his dressing or his tubes wet so keeping it all dry was a challenge but he had fun. I'm kinda bummed I can't take him swimming or do too much water activities. Oh well he probably shouldn't be out in the sun anyway.

One year ago...

It's crazy to think that a year ago yesterday this whole thing started. James had gotten sick and we were out of town at a wedding. When we got home and took him to a doctor they had told us it was just a bad flu. Fast forward to today the flu is still here. It's crazy that a year ago he weighed 25 pounds and was loosing weight fast. Now he weighs 37.2 pounds and gaining great. It's crazy how much can happen in one year.

Today we took James to the clinic and everyone at Cardon's was so excited to have James back. Dr. Li couldn't believe all the improvement in James. James' blood counts look great! They told us we could increase his feed to 15ml and on Thursday when we go back if he's still good we will start to taper off the TPN. The orders have been sent for his MRI and PET scan so as soon as they call me to schedule it we can get it done. Dr. Li doesn't think James will need to do radiation therapy but they will keep it in mind. If he does need radiation it won't be for at least 6 months so that James can completely heal. I am so proud of my boy. He is doing so great and loves being home. Now when we go to clinic he always tells us "I'm just visiting!" He is very anxious to go out and do everything. He has 8 months to make up for, so he wants to see everything. He is very excited about his new sibling but says it's not a boy it's a girl. Let's just hope he's ok either way. We are all still trying to get used to our new normal.

Last visit to PCH

Today was James' last visit to the Phoenix Children's Hospital clinic. We met with Dr. Adams and she thinks James looks good. We started his NG feed on Saturday afternoon and he has done really well. He has only thrown up once since then which is great. She told me I could raise it up a little going from 5ml per hour to 10. The goal is 50ml per hour. He does have diarrhea now though so they didn't want to take him off TPN just yet in case we have to turn the feeds off. He will get to go see Dr. Li on Monday and we are so excited. He had to get a neupogen shot because his ANC had dropped from Friday. We also talked to Dr. Adams about the next steps for James. He pretty much has to get a complete work up again. He needs an MRI, PET scan, hearing test, eye exam, and a test to see where he is developmentally. She also said depending on what the scans look like he might have to do radiation. She said they won't know that until after the scans and they all sit down and discuss it. Honestly I wasn't excited that he might have to do more treatment but we have always known that it is a possibility. He has just been through so much I don't want him to go through anymore. She did say though if he does have to do radiation it won't happen for a while. For now they want him to rest and recover. I'm excited for him to get to be home now for a while. Hopefully everything will go well for him.