First Mediport access

James has been doing well. His chest is healing nice and last night we took off all the tape they put on. It's a little sensitive still, sometimes I accidentally push on it when I pick him up. I always feel so bad cause he will cry that it hurts. He had his first time getting it accessed which means they stick a needle in it and get his blood. They told us the first couple times are the worst but he did so great. They give you this numbing cream to put on it before you come in but it doesn't help much, or maybe I didn't put enough on. Eventually he will only have to get his blood checked once a month instead of every week. He is still doing his therapies every week. He took 3 steps on Sunday all by himself, we were so excited for him. It's the first time he's been able to do that in almost a year. They turned his feed time down to see if he will eat more. The goal is to get him off tube feeds by the end of next month. They said if we turn it off longer maybe he will be able to eat more. We met with his Radiation Oncologist last week and he told us what he thought. They can't do anything till after June so we don't have to make any decisions for a little while. They said we would probably wait to do anything till after his next set if scans in July. Other than that James is doing well and staying nice and healthy.

Surgery

This week like all other weeks was busy, except I had my own doctors appointment as well which made it kinda tricky. Thank goodness my husband's employer lets him make his own schedule because I can't be in two places at once. Clinic went well for James this week all counts are still good. He only had PT on Tuesday this week since he had surgery. He is getting so strong and can stand with very little support. Wednesday I had to check him in for surgery at 7:30am. His surgery wasn't scheduled till 9:30, thankfully they had toys and movies for him to use while he waited. His doctor ended up assisting in a surgery right before James' so we had to wait even longer. James didn't actually get taken back till 10:40. It took about an hour for the surgery and then they wait about 15 minutes after before they let the parents go back. James doesn't like coming out of anesthesia, he always cries a lot and doesn't like the nurses to touch him. They had to put an IV in his hand and he hated it. He kept asking the nurse to take it off. They also switched his NG tube to his left nostril and he hated that. Thankfully we did not have to stay overnight. They originally told us we would but his doctor thought he was doing so well he didn't need to. He was very tired the rest of the day but refused to take a nap. He slept very well last night. He's in a little pain but James is so tough he doesn't ever tell you he hurts until it's a lot of pain. Today he won't go to PT so he can rest and relax. Although a 3 year old doesn't really want to hear that he needs to take it easy and not crawl around too much. Tomorrow we meet with the Radiation Oncologist to see what his plan would be for James. Over the weekend we will definitely have a lot to think and pray about.

To eat or not to eat?

Yesterday was clinic day and everything is still looking great. James only has to go to clinic once a week now instead of twice. They decided to just keep James' feed at 45 because they think that is plenty of calories. They also told us yesterday to start turning his feed off about 4 hours before dinner so that by the time we get to dinner he will be hungry. They want him to get into the habit of eating again. That is going to be quite the challenge because getting him to take one bite is hard. He is still all set for surgery next week. We met with his surgeon to just go over everything and James will have to stay over night in the hospital just to be monitored. He has started all of his therapies regularly this week also. He gets pretty worn out after physical therapy but he's doing a really good job. James' hair has started to grow back! When people comment on it he tells them he doesn't have very much. He has started talking like Zoey lately so we are constantly telling him to talk like a big boy and not a baby. He is pretty excited to have "another Zoey" in a couple months. Hopefully he won't be too disappointed when he finds out he can't really play with his new sibling just yet. He loves people to come over and just play with him. He is also very anxious to go visit his grandparents in Utah. All in all he's doing a great job!

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.