Ear problems

James went to have a hearing test on Thursday. He did one test and it came back abnormal. The audiologist looked in his ears and said he had fluid in both ears and that he couldn't continue the hearing test till he saw his pediatrician. We took him to see his doctor later and she said that he has an infection in both ears and his left ear drum has burst. Poor boy! He has a high tolerance for pain and never says when he hurts. So they put him on some antibiotics and special drops for the left ear. She didn't mention anything about putting tubes in. His hearing is pretty bad and his hearing aids don't help at all. Hopefully he can feel better soon. Good news though he's gained 5 pounds since September. his leg is slowly getting better. He sees his orthopedic surgeon in a week to check and see where he's at. He's very excited about Christmas and is enjoying spending time with family. Merry Christmas!

Gaining weight

James went to clinic yesterday, everything looks good! Doctors are very pleased with how everything is going. He is scheduled for his next MRI at the end of January. If everything looks good then James will get his port out in February. James weighs a nice 37.5 pounds! This time last year he barely weighed 30 pounds maybe. It's nice to see some weight on him, it makes me so happy! He's eating really well. His hair is still coming in nicely. It is very thin and fine but hopefully over time it will go back to semi-normal. He loves playing with his sister and helping his parents with anything he can. He had his last pt of the year yesterday. He will start again in January. Hopefully by then his leg will be a little better and he won't be so scared to walk on it. James loves going to speech! It's sometimes challenging for him since half his mouth doesn't move but he tried really hard. Other than that everything is still going well! He has a hearing test next week just to check everything. Thank you everyone for your love, support, and prayers. We are very grateful!

Cast off

Yesterday James had many visits to different doctors. One of them was his orthopedic surgeon. They took his cast off and took some X-rays. His leg is healing nicely, not 100% better but it's getting there. The bone is still slightly broken. They were going to put him in a cast for two more weeks but after finding out he can't run and just learned to walk again they said nevermind. He's just supposed to be very careful and take it easy for a few weeks. They said it could take up to 4 months before its back to normal. James is very happy to have it off but pretty nervous to even stand on it.
James also saw his eye specialist yesterday. His right eye is getting better. The doctor said he doesn't think he will need glasses. He has to wear an eye patch for 2 hours a day on the good eye and ointment in the right every night. He is finally used to his "ears" or hearing aids. He even asks us to put them in. He has another hearing test in two weeks. His therapies are going pretty good. He's getting more frustrated lately with OT. He just gets into the mind set that he can't do things. Poor guy! I try and remind him that he can do it and it's ok if he needs help. Other than doctors and therapists he loves playing with his sister and brother. He loves going to the aquarium and seeing all the fish. He is very excited for Santa to bring him snow. He has his next MRI in a month. I pray everyday that his cancer will remain gone!

Still hanging in there

James has been doing pretty well. He is starting to walk a little on his leg which is good. He crawls everywhere mostly. He started PT again which is a little challenging. Nothing too exciting or new. His hair is coming in nicely. He says he wants more hair than his Papa, haha so hopefully we can make that happen. He is very excited for Christmas. This is his favorite time of year and last year he spent it in the hospital, so we have to make up for it. He asked for The King(from cars) and snow for Christmas. I already got him the car but as far as the snow goes, well lets just say for the first time I will probably pray for snow. Good thing we are going to Utah this year so the chances are pretty good. He is still packing on the pounds, his pants are finally getting a little snug. It's nice to buy him new clothes, especially since he has been in the same size for over a year. He goes in a week and a half back to the eye and orthopedic doctors. His eye still doesn't close all the way so they might need to do another surgery. He is doing great, I'm so thankful for this sweet boy and all the time I get with him.

Couch potato

James went to his orthopedic doctor and finally got his cast. They said he has to wear it for four weeks and then we will go back and see how it's doing. It might take longer than normal to heal because his bones are weak from the chemotherapy. He's allowed to walk on it as much as he's able. James though doesn't think he can or is scared, so he sits on the couch most of the day. I have him try and walk and crawl a few times a day. He got his hearing aids. He didn't like them the first couple days but now he thinks they are ok. He calls them his ears lol. He's still doing his therapies and started speech again. Yesterday at clinic his doctor was very happy that he's gaining so much weight. He looks like a completely different person than the one at this time last year. We talked about his face. The right cheek and part of the mouth doesn't move. I wanted to know if there was anything we could do to fix it but they said no. The nerves are most likely permanently damaged and plastic surgery wouldn't help at all. I hate hearing those kinds of things. It makes me frustrated and sad that he will have all these permanent things and there is nothing I can do. I know he's a little kid and they don't care how they look so I guess I shouldn't worry about it. He goes in to get the volume turned up on his hearing aids tomorrow hopefully it will go well. I love my sweet boy and am so glad I still get time with him.

Broken bones stink

Well James has broken his first bones. Sunday night after we had gotten ready for bed James was climbing up to his bed on the top bunk. Usually I'm standing behind him but I was putting Zoey to bed and I guess he thought he could do it.Well he lost his footing and fell and landed on his right leg wrong. I knew immediately he broke something. I took him to the ER and we had some X-rays done of his foot and leg. Sure enough he broke both his Tibia and Fibula up close to the knee. They put him in a splint and sent us home. They won't have to reset it thank goodness! He goes in to see the Orthopedic surgeon on Friday and will probably get his cast. I was so excited that this year he wouldn't have to be in a stroller for Halloween, well I'm wrong. Looks like I'll be pushing him around again. Oh well! He isn't in too much pain but he's scared to move at all. He mostly hangs out on the couch either watching movies or playing iPad. He will probably be in a cast for 3-6 weeks. Physical therapy has been delayed till his cast comes off.  His physical therapist said "well that's what happens when we teach him new things." She's been teaching him to climb the rock wall. Hopefully he makes a quick recovery and is back to his normal self.

MRI scan

James had his three month post treatment MRI this week. His scan came back clear! No cancer cells anywhere! We were so relieved that it was good news. He will have his next scan in January so until then we will just enjoy our time together and not worry about anything. He gets his hearing aids next week. Hopefully he adjusts ok to them. His eye is getting a little better. Sometimes it still doesn't close all the way when he sleeps. His next eye appointment isn't till December so we will see what happens. He is still doing really well during therapy. I'm always amazed at how far he has come in the last year. This time last year he could barely sit up by himself and now he's walking and climbing. Thank you to everyone for your continued prayers!

Going well

James is doing really well! He went into clinic today and has gained 2 pounds since they took him off his feeding tube. He is really enjoying food lately. His eye is still a little crooked but looks better than before. He wears an eye patch everyday for at least an hour to keep it nice and strong. He was fit for his hearing aids and will have them by the end of the month. We found out our insurance doesn't cover hearing aids and it was going to cost about $4000. Thankfully though his doctor said we would more than likely qualify for this program where this organization gives them to you for free. We are still waiting to hear if we got them. James is still doing OT and PT every week. Speech has been put on hold till his hearing aids come in. He had his neruophsyc evaluation and it came back that James is exactly where he should be developmentally. He actually improved since his last test in December. His next MRI is scheduled for Monday morning. It will take about 3 hours to get all the scans they need and then we wait for the call telling us good news or bad news. I hate it when it's MRI time, it makes me nervous. We are trying to get a couple fundraisers together soon. I'm so grateful to my Heavenly Father everyday that James is here with us and doing well.

Eye surgery

James had his eye surgery yesterday. The surgery went well and he is home and doing good. His eye isn't straight yet. They said it takes a week or two before its straight. His eye is a little puffy but looks good. It's kind of weird to be able to see both eyes now. He was supposed to get fit for hearing aids last week but he had too much ear wax. So we took him to his pediatrician to get it cleaned out. Today he is supposed to go back and get fit for his hearing aids. He picked a rusty orange color. He gained a whole pound since being off his tube! So as long as he keeps it up he can keep that tube out. Also he only has to go to clinic every two weeks now instead of every week. His MRI is in mid October. As long as it's clear then he will only go to clinic once a month until February and then he can get his port out. It's nice to be home this year for all the holidays. Hopefully James continues to have no Cancer cells and can enjoy being a little kid.

Back to reality

We had a whole week off of doctors appointments and it was great. James had such a fun time on his trip. It was really hot which made walking around uncomfortable but we still had fun. James loved all the rides. He got to meet Mater in Cars Land and it was a little overwhelming for him I think because Mater was huge. I hope James remembers this trip.
He went to clinic yesterday and they took his NG tube out. As long as James continues to eat and doesn't loose weight he can keep it out. I hope we don't have to put it back in because James loves having it out. He had his neruo psyc evaluation done this week. Pretty much they test to see what all he knows and where he is at developmentally. We don't get the results for a couple of weeks. James had a hearing test done right before we left and we found out he has severe high frequency hearing loss in both ears. He's getting fitted for hearing aids on Friday. He also scheduled to have surgery on his eye next Thursday so lots of stuff coming up. I'm just happy we are getting him back to semi normal. I know he won't ever be how he was and that's ok. I'm just so grateful he's still here with us. I pray everyday that the Cancer will stay away. He has his 3 month MRI coming up in 3 weeks and it's always very nerve wracking.

More surgery

Well James saw the eye doctor last week and we received good news and bad news. The bad news is that his right eye has permanent paralysis on the 6th and 7th nerve. The 6th nerve moves the eye right left up down and the 7th closes the eyelid. Our only option for him is surgery. So that's what we are going to do. The good news is that his optic nerve is normal and fine. So the plan is to have surgery to fix the muscle so his eye will at least look straight a head. Then we met with a plastic surgeon who will do another surgery to fix his eyelid. He might never be able to move his eye to the right but at least he will be able to see better. He has also gained a pound since last week, yay! He has been eating more and more which is great. His therapies have been gong really well and he's getting so strong. Next week we are doing his Make A Wish trip. He wished to go to Carsland in Disneyland. He is so excited to go. He still has no hair on his head, they said its probably just taking a while since he's had lots of treatment. Today we go back to see the Audiologist about his hearing. My poor boy, I'm sure he's tired of doctors. I know I am.

Weight loss

James is still doing really well. He went into clinic today and everything is looking good. The only thing that is still a struggle is his weight. He lost a little weight so we are trying to figure out what to do. They put him on an appetite stimulant to see if he can get a little more hungry. Hopefully it works and he can start to eat more and gain some weight. His doctor isn't too worried about his weight but we definitely don't want him to loose anymore. Other than that he is doing pretty good. He is still going to his therapies every week. His PT has been going well. Today she had him try to ride a bike. It's pretty hard for him to push that right leg. It's funny you don't realize how much strength it takes to do simple things like that. Tomorrow he goes to see the eye doctor about his right eye. Hopefully they can tell us some good news. We were looking at pictures from this time last year and we have noticed his right eye has definitely gotten worse. I think I'm just a little nervous they are going to tell me it can't be fixed. James loves holding his baby brother and loves playing with his sister. He is such a joy to be around we love him so much.

Staying home is boring

James has been doing really well. Today he had PT and went to clinic. He is getting really good at walking. One of the goals is for him to not loose his balance and not fall, all week. He already failed, haha. He just starts going faster than his body is ready for and he falls. All his therapies are in the morning now which is super nice because he does way better and is really ready for nap after. He's getting better with his OT also. He has his eye appointment next week to see if there is anything we can do to fix it. He had a hearing test last week but fell asleep during it so we get to try again. He is still bald and it doesn't look like hair is coming in any time soon. He likes having a schedule and having things to do everyday. When he doesn't have any appointments he isn't really sure what to do at home. Staying home all day is boring for him. He is still playing with Zoey and having fun with his new baby brother. He asks everyday when does he get to go to Cars Land. He is very excited to go. We love having him home and we love knowing he doesn't have any more treatment to do. Hopefully it will stay that way.

Busy boy

I didn't realize it had been so long since I last wrote. James is doing well. He went to clinic today and saw Dr. Li for the first time. Dr. Li couldn't believe that James can pretty much walk now. James' blood counts are all good. They are now working on building his weight. James only weighs 32 lbs and is in the 21st percentile for weight. I have to chart exactly what he eats for a week so that the nutritionist can look and see just how much he eats orally. Also we are supposed to make him wear his eye patch more often. He hates the eye patch so we will see how that goes. He started all his therapies this week. We go to the hospital 4 times a week with everything he has going on.  Tomorrow he has an appointment to check his hearing. I hope they don't say it has gotten any worse. Then in two weeks he goes in for his eye. He really enjoys being home and playing with Zoey. He tells me all the time that he loves being home. For now he will just have clinic once a week and have MRI scans every three months. We are going to Disneyland in a few weeks for his make a wish trip. He is so excited! We hope and pray the cancer will continue to stay gone and we can try to get back to normal.

Free at last, free at last!,

James had his final day of treatment this morning. We are so proud and happy for him. After he woke up and relaxed he got to pick out a few new toys. Sam called and facetimed with me so I could then see James bang the gong. It's made me so happy for him. Then they went to go see Dr. Kahtua and he said that he looks great! His skin looks so much better! Then they told him that he was clear to go home! He is so excited to come home. They are hanging out with Uncle Ben and Aunt Britt tonight and then waking up super early tomorrow and driving all day. We are so so proud of James. This was the very last thing he has to do treatment wise and it has been such a long road for him. Now he just has MRI scans every 3 months and weekly visits with Dr. Li. I can't wait to have my sweet little boy home!

6 rounds left

James is doing pretty good. The fatigue has finally caught up with him. He gets very tired very quickly and has no trouble taking a nap and going to bed at a normal time. His head is still pretty red but it's started to peel. His ears are also really red and they actually hurt him a little. His doctor today said that, that is where they are pointing the beams right now so his ears are going to be a little more sensitive. His spine has some redness also but it doesn't seem to bother him. Other than that he is still doing everything else normally. Still plays in the play room a few times a day and is getting better and better each day walking. I'm excited for him to go back to PT and have his therapist see how much he's improved. He misses his mom and Zoey but is having a fun time with his dad. I think it's helped the boys get a little closer being together. They are thinking he might have to stay a couple extra days after his last treatment just to make sure his counts are ok but Sam is trying to convince them to just let them leave the next morning. I'm pretty much due any day now so Sam would like to try and get home as quickly as possible. Hopefully they make it, if not James will have a new sibling waiting to meet him when he gets home.

19 out of 30

James is still doing well. His "sunburn" has gotten a little worse. His skin is very fragile. He's fallen a few times and the skin scraps off really easy. So now his poor little head has two big scratches. He's still walking and playing and having a good time. He misses his mom and Zoey a lot. We FaceTime everyday. He likes for me to show him all his toys here at home. He isn't eating a ton but we aren't too worried right now. We figured we would start over with the eating when he gets home. The doctors say everything is looking good and going well. Only two more weeks till he is done and gets to come home. I think the boys are having a good time together. It's good for them to be together without mom even though none of us like it much. 11 more treatments till he is finished yay!!

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.

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.

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.

Home again

James finally got to return home yesterday. Now we know one fever equals four days in the hospital. He went into the clinic this morning just for a blood check. His ANC is a little low so they thought he might need a neupogen shot. Thankfully it went up a little from yesterday so he didn't have to get one. The doctor said sometimes their ANC will drop down and they need a little "pick me up" to help out. When we got their they always take vitals first thing and she took his temp and it was a low fever. I just thought "oh my gosh you have to be kidding me!" They waited ten minutes then took it again and he was fine. Hopefully he doesn't get another fever. He isn't allowed to go any where right now other than home and the clinic. I just don't want to take any chances, especially since his ANC isn't fantastic. He is loving being home and playing with Zoey and his toys. It's always nice because he always seems to be able to get right back on his normal schedule. On Sunday we are throwing a welcome home/done with chemo party for him. Make a wish is stopping by to surprise him and tell him his wish is going to be granted. He is going to be so excited and happy. He wished to go to Carsland at Disneyland. We don't get to go till September because he's not allowed to leave the state till mid June. Also I didn't want to go in July when I'm 8 months pregnant. He keeps asking if we can go now and I just have to tell him in a few months. He will start regular PT here in a couple weeks. He does really well with his walker and I think with regular therapy his legs will get strong quick.

Back in the hospital

Well James was doing pretty good till Sunday evening. We went to my parents for family dinner and he was just really cranky and didn't feel well at all. Later that night he got a fever of 101.4. So we called the doctor and told her what was going on and she had us bring him in. He was admitted shortly after they took his blood and gave him antibiotics. They always give him three different kinds to cover anything that might be making him sick. The blood cultures came back negative which is great. As long as they blood cultures continue to be negative and he doesn't get anymore fevers he can go home Wednesday. They have to monitor him and give him antibiotics for 48hrs before he can leave. So now every time he gets a fever we know to just plan on being in the hospital for two days. Other than that he will probably get some blood while he's here cause his hemaglobin was low. They also want to try to turn his feeds back on tomorrow or Wednesday. Hopefully he can do well with it and keep it down.

Home

James was finally discharged this afternoon. His doctors thought as long as I could handle everything he was ok to go. He has to go into the clinic tomorrow, Monday and Thursday. He will get his PET scan in a few weeks and then we will be transferred back to his clinic at Cardon's. We are so excited to have him home. He loves playing with his sister and their toys. Love having him home!

A few more

Yesterday they put in James' NG tube. He didn't handle it well. It took about an hour to relax and quit throwing up. Any sudden movements would make him start gagging. They did an X-ray on him just to make sure it was in the right spot and it was. Once we got his body to relax he only threw up once and it was because he sat up real quick. He won't get to get come home today because they just barely switched all his meds from IV this morning. They said the plan today is just to see if he can handle taking all his medication without getting sick. So hopefully he will be ok and will get to leave soon. I guess it's ok he doesn't get to come home today because we had our carpets cleaned yesterday and he can't go in the apartment for 40 hours after. He is also getting a speech evaluation today to see if he needs to continue with speech therapy or not.  We are all so anxious and impatient to get him home. It's hard to just relax and wait. My husbands favorite phrase is " I hate waiting" from Princess Bride. We definitely hate sitting here waiting but it's ok.

Two more days

James has been doing so good. The doctor said if everything goes well today and tomorrow he can come home Wednesday. He's been throwing up a little bit more lately so he won't get his feeding tube in today. Most likely it will go in tomorrow. He won't start his feed until his gut is healed a little more. They are just putting the tube in for me to give him meds for right now. James is extremely bored. He just lays and watches his netflix on the iPad. He is very ready to go home. I know once he gets home all he will want to do is play toys with his sister. I'm so glad they get along and love to play together. Hopefully everything will go well so he can go home!

Getting better

James is doing much better. His ANC went from 742 yesterday to 3008 today. He feels better and is pretty happy. He's had a little bit of a bloody nose yesterday and today. They are trying to figure out the best time to put the NG tube in. They are saying he can come home Wednesday or Thursday next week as long as his liver stays good. So far it's still ok and I'm hoping it will stay that way. Since his counts were all up and great he was allowed to go in the hall and ride in the little push cars. He had so much fun. He was so happy to be out of his room. He kept saying hi to everyone in the hall. Child life got him a little tricycle and he tried it out but quickly went back to the car. His little legs just aren't strong enough to push the pedals so he would get frustrated. His bottom looks much better and his mouth sores are almost all gone. I'm so glad he feels better. It's kind of weird to think that once we leave he won't have to come back except for follow up scans.

Better

James has been doing better. His fevers are all gone, thank goodness! Nothing ever showed up in the blood cultures so that means it was just a random fever. His liver is doing better as well. It's almost back to normal. They have been giving him medication to help and it has been working. The doctor said she will do everything she can to make sure he doesn't get VOD again. His mouth sores and bottom rash are still there. He coughs a lot just because he has so much mucus that sits in his chest. They decided a few days ago to put him on Ativan to help with the nausea. Well yesterday I had to argue for a while with the doctor to take him off of it. James has a reverse reaction to Ativan and Benadryl. When he's on it constantly he becomes extremely agitated and grumpy. Nothing calms him down, he's constantly throwing fits and is really hard to deal with. She told me he was only like that because of pain. James actually does the opposite when he's in pain. He's very mellow and subdued. It was just very frustrating to be told that I don't know my own son. Eventually she understood what I was saying and he's now only going to get it if he really needs it but the nurse has to ask us first.  The last few days have been tough for us as parents trying to keep our patience with him. Thankfully today he's not so cranky and is finally calming down. His counts are still zero so we hope in the next couple days they will come in. Once his ANC is up he will get the NG tube put back in and we will slowly start giving him formula. They said they will try to transfer him back to the Cardon's doctors as soon as they can since we live right by that hospital. He is very anxious to get out of here. I think he knows this is the last time he has to do this because he's already been making plans for thing which he usually doesn't do this early. Only a little bit longer!

Fevers and a bad liver

Friday morning about 2:30am James got a fever. He's had 3 more since then. They took some blood cultures to see if he had any kind of infection but everything came back normal and is still normal. This morning his eyes were slightly yellow and his liver level went up which isn't good. They did an ultrasound on his liver to just see what was going on since he has a history of liver damage. The ultrasound came back normal, his liver looks good. So they aren't sure why he's getting fevers. Now they will watch his liver very closely we don't want him to get VOD again because that was a nightmare. The doctor said as long as they catch it when it first happens they won't have to put a drain in his tummy again. I guess they can just give him some medicine and cut back on the TPN a little. He tells us a lot that he doesn't feel good. It breaks my heart every time because there is nothing I can do except hold him and tell him I love him. I know they say it gets worse before it gets better. I'm hoping this is the worst of it but knowing James' luck it's probably not. He's already making all kinds of plans for when he's done. He wants to go to the dinosaur land(natural history museum) and the aquarium. He also wants a vanilla cake with red frosting, haha. I think it's funny how specific he is. He will play for a little bit but gets pretty tired quickly. His naps have become very long. He sleeps from about 11 to 4. Hopefully he can get past the fevers and his liver won't get worse.

Cancer stinks!

Well looks like the side effects are in full swing. James has really bad mouth sores and his bottom has a real bad rash. He just feels awful. He won't play and he just wants to be held and cuddled. We knew this third round was going to be the toughest on him. The goal is to have him out before March 24th because that's my big ultrasound day and we want him there. He does have constant pain meds going so we can keep him comfortable. Other than that he's pretty much just watches his movies and rests. So proud of my strong boy!

Last Transplant

James has been doing very well. He's been a little bit sick lately just because he's trying to eat and drink more. He has finished his chemo treatment and received his very last Stem Cell transplant this morning. The doctors are always so shocked that he does so well. I guess most of their kids get really sick and have some bad side effects. It's just a nice tender mercy to know he doesn't have any. Now we just sit and wait for him to heal and get his counts up. As soon as they are up he can come home.

Just kidding

So they decided to do another nose swab just to make sure he indeed had RSV. Well results came back that it was just a cold. Thank goodness! So he started chemo Thursday afternoon and finished his very last day of chemo yesterday evening! Today and tomorrow are his rest days and then Monday he will get his last transplant. He is doing very well still but give it till about Tuesday and then the side effects will come. He has showers every 6 hours and hates them still. He cries the whole time and then when they turn the water off he's fine. His PT brought him a walker. It's like an old person walker but miniature size. He does really well with it, so she said she wanted to order him one for home. Other than that James is doing well. He's a little more tired but that's only because they wake him up a lot for showers. They did tell me his rash this time will be worse then the first two times. Hopefully it won't be too bad. Only 19 days till he can come home!

RSV

Well we were excited to get the ball rolling and finish this chemo. We had a slight hiccup, they always do a nose swab and blood work on the first day to check him out. James tested positive for RSV. So that means no chemo till his RSV is gone. If they did treatment now he could develop pneumonia which would be horrible for him. Also I'm not allowed to be even be in his room because I'm pregnant. The treatment mist causes birth defects so I have to wait till it's over. James is doing really well though the doctors are really surprised. He has been playing and having fun with all his toys. Hopefully this will pass quick and James can get well.

Happy at Home

Well James has been home since Friday evening. The first couple days were pretty rough. James was throwing up a lot all day and night. Thankfully I have an awesome husband who took the night shift and would get up with him and change his bedding. He is finally doing fine, it didn't help that James wasn't sleeping either. He went to clinic yesterday and they will admit him next Wednesday. He still has diarrhea so they want to let him rest a little longer. He's eating a little more and playing all day. His favorite movie is Peter Pan. He watches it at least once a day. We are so excited for him that he only has one round left. All his doctors are so excited as well they bring it up all the time. I just hope this last bit of chemo isn't too tough on him. Only 4 weeks till he gets to come home for good!!

Stir crazy

Well James is still in the hospital. He's supposed to get to go home tomorrow morning. They waited a little longer because tomorrow is his last dose of antibiotics so instead of sending us home and then having to come back every day we will just wait till he's done. We had a little scare and almost thought he wasn't going to get to leave at all. Zoey got a live vaccine at the end of January and James isn't allowed to be around her for 21 days. If I would have known that I would have waited on it. Anyway long story short the infectious team said he should be fine as long as Zoey doesn't have a rash or anything from the shot. He's still throwing up quite a bit. One of his nausea meds makes him sick lol. He's going a little stir crazy, he's just so bored! PT doesn't really ever come by and when she does she doesn't make him get out of bed. I feel bad cause I'm sick a lot or really nauseous so I don't really get him out and about either. Other than that pretty much the same stuff. He has to have another MRI in between treatments just to check on things. He probably won't come back in until February 26th unless he's doing amazing and has no diarrhea then he will come back the 19th. Only one more night and then we get to go home for a few days!

Homeward bound

James is doing really well. His counts are all up except platelets were low this morning. His cells are officially grafted in. They said he will get to go home probably Wednesday. He has his GFR tomorrow morning to get the next right dose for his last round of chemo. The only thing keeping him here is switching all his meds from IV to oral. As long as he can handle taking them he should be ok to leave. He is shedding all his skin like a snake. It's kinda nasty. He is very excited to go home and play with his sister who he hasn't seen in like two months. He's been a little cranky but that's ok. He has gotten very used to everyone doing everything for him all the time so we have been trying to make him get things and do things for himself. I think the nurses think I'm a very mean mom cause I always tell him no he can get it and then he gets mad at me. When he doesn't feel good I try and cut him some slack but when he's better I make him do it. We are excited to have him home for a week before he has to come back. Only one more round to go! As this last round draws near I find myself more and more nervous that the cancer will come back. They said it's very hard to get rid of a second time.

Low Blood Pressure

Well Wednesday morning James blood pressure dropped pretty far down. They said if they couldn't get it back up he would have to go to the PICU. Thankfully they tried a few things and it came back up a little. It's still not great but better than it was. It seems to only drop when he goes to sleep. His legs have been hurting which they say is because his white blood cells are rising. His ANC was 258 this morning but his platelets were down again so he will get more. His rash is now peeling all over which is good. He is playing a little bit more but is still pretty tired. His favorite movie right now is Tinkerbell(his dad isn't too happy about that). He loves playing Zombies and Lego games on the iPad. He's doing a pretty good job all things considering.

E. coli

James has been getting slightly better. He hasn't had a fever since Friday which is good. Also they found out what caused the fever. They found out he has an E coli infection. Thankfully the antibiotics have been working and there are no more traces of infection. They said it could have come from anything or anyone. He will stay on antibiotics for two weeks to make sure they kill everything. His counts have been a tiny bit better and he's starting to feel a little better. He's still pretty tired and doesn't play much. His rash is all over his back now. They have cream they put all over his body twice a day. It doesn't seem to bother him which is great. He has a couple blisters on his leg but he got that last time too. He likes to cuddle and have us snuggle with him in his bed. He pretty much just watches movies and sleeps all day.

Fevers

Yesterday afternoon James finally got a fever. For the last couple days his temp has been high but not quite a fever which usually means a fever is coming. So they took some blood cultures and started him on 3 different antibiotics. He got another fever during the night that was pretty high. This morning the doctor told us his cultures came back positive but they don't know for what yet. So he caught a bug pretty much but the antibiotics they are giving him pretty much cover everything. His poor rash is a little worse today. It's starting to itch so we have to keep him from scratching. His platelets were low again so he is getting more. They are also doing a urine culture on him cause yesterday his diapers smelled really bad. He was also hooked up to a pca pump with morphine so he is constantly getting pain medication. They said his bones probably hurt also trying to get all new cells. I feel so bad for him because he just lays there. You can just tell by looking at him he feels aweful. All his counts are still low or zero, hopefully in the next few days they will come up and he can feel better .

Little Fighter

Well today we could definitely tell James is starting to not feel good. He received platelets again this morning and his ANC has finally dropped. He would play but wouldn't really get to into it, which is a sign he isn't feeling great. One thing I've learned about my son is he is a fighter and has a big tolerance for pain. James won't say he hurts until it's unbearable and he's shaking from pain. That happened this evening. He threw up and there was a little bit of blood which means he has mucusitis and just didn't tell me he hurt. His rash this time isn't on his groin area it's all over his tummy, under his dressing, and all over his bum. I try to put cream on it as much as I can to keep it moist. They've started giving him some morphene to help with the pain. Poor guy is so tired and sleeps a lot. His poor body is just trying to heal and that takes a lot of energy out of him. Otherwise everything looks good his kidneys are working good and his liver is alright. His liver isn't normal but it isn't bad so that's good I guess.

Resting

James is doing well. He started his neupogen shots yesterday to help bring his counts up. His ANC isn't zero yet but they are expecting it to be in the next few days. He got some platelets yesterday, I don't think he needs any blood products today. He did his PT yesterday, his legs are getting stronger. I will be glad when he goes back to Cardon's for his therapy. They just seem to do slightly more with him and make him work harder.  He's only throwing up about once a day which is good. Still no mouth sores, his bottom is getting a little rash but that's normal. Other than that things are pretty much the same. Just resting and recovering.

Stem Cell Transplant #2

Today was transplant day. It takes them about an hour and a half to get everything ready and give him his cells. He did really well again. Usually most if their kids throw up and get uncomfortable but James was perfectly fine. His hemoglobin levels are low but they won't give him blood until later tonight. They just don't want it to mess with his transplant and if he has any side effects they need to be able to tell if it was from the cells or the blood. Other than that James is just resting. He still doesn't have many side effects but probably in the next couple days they will start to surface. He is done with showers which he loves! Yesterday all day he kept saying "no shower me" it was pretty cute. Now we just let him rest and heal for a couple weeks and then he gets to start all over again. We are so excited that he only has one more round of chemo to do. We are all definitely getting tired of living in the hospital and never getting to all be together. It makes me miss the days when the kids and I stayed at home all the time.

Chemo day 2

James got his last day of chemo today for this round. He is doing really well so far. Not too much nausea but again it takes a while for all the side effects to kick in. We did find out he has a sinus infection which he got last time at Cardon's I think around his second round of chemo. The only difference between now and back then is here at PCH they do a nose swab every time he comes before they start chemo. So they know now and can treat it whereas at Cardon's he kept getting all these fevers and they couldn't figure out why and then they figured out it was cause he had a sinus infection. The only thing that really bothers him is the showers. He gets showers every 6 hours to scrub the chemo chemical stuff off. He cries and throws a fit every single time. He will have to continue with showers till Sunday poor guy. He's still playing and having fun with his toys. He has actually been eating a little bit more which is nice. The next two days are rest days and then Monday is his transplant and then recovery. Two chemo rounds down only one more to go!

Hydration day

Well James is back in the hospital for round 2. Today is a pretty relaxing day, they just give him lots of fluids today. PCH decorated his room in dinosaurs this time and gave him more toys. Which I'm still trying to find places for the last bunch of toys he got. He is pretty happy to be here but I'm sure by this evening he will be done. Tomorrow we start chemo and we start the showering every 6 hours again. He hates that!

Are we or aren't we?

Well James MRI came back the exact same as it was before we started chemo. So they think maybe he has some nerve damage and that is why his legs gets cold. We got to go home Tuesday evening and were told he would go to clinic Thursday and probably be admitted for treatment. He still has a little diarrhea so they wanted to let his tummy rest a little longer. He has another clinic appointment on Monday and they want to admit him on Wednesday. We are happy to have him home a little longer but it kind of makes it difficult to take him back. He is playing all day everyday and asks to walk around a lot. It wears him out really good and then he sleeps really well.

Back and forth

Well we got to go home Friday night. It was short lived but we are grateful for the time we get to all be together. Monday James was supposed to go into the clinic for just a check up. Well everything was looking good then I had mentioned that I noticed James' legs have been cold from the knees down and it doesn't matter if we bundle them up they stay cold. The doctor told us that wasn't a good sign. So we had to get an ultrasound on both his legs and pelvis to check for blood clots. Well 5 hours later we finished and were told James doesn't have any clots which is good but they wanted to admit him into the hospital and get an MRI done on his spine. It's faster to admit him and get the MRI then try to schedule it. So he had an MRI Monday evening. James was way upset, he wanted to go home so bad. They just want to make sure everything in his spine is ok. If everything looks normal he can go home if not he will stay. He starts chemo Friday so if he has to stay it's ok. Other than that we are all ok. We are excited for this to be over, only two more months woohoo!

Waiting is the worst

James' counts are all up and he hasn't had to have any blood transfusions in a few days. They put the NG tube back in Tuesday and just started him on pedyalite. Then yesterday they put real formula in it. Well he had a rough night he kept throwing up so they turned the feeds off and aren't planning on turning it back on. He's having a hard time even keeping his meds down, but when you haven't eating in almost a month it's probably hard on the stomach. So he might get to go home tomorrow but they aren't sure because he's so sick. He starts chemo again next Thursday. I have to say the worst part of the treatment is waiting. We have like a week and a half where all his counts are up and he's feeling pretty good and we just sit and wait for the next cycle to start. His physical therapist got him this cool walker. He stands in the middle and it supports his back and sides and he can walk around. He doesn't walk far because he gets pretty tired but he does really good. She said even if he does it 5 minutes a day it will help strengthen his legs. His body is peeling pretty bad from the chemical burn and he finally lost all his hair. The last chemo he did just thinned it out real good but he didn't lose it. He asks for Zoey everyday but we FaceTime with her about every night so he can see her.

Almost out of here

Well James has been recovering well. His counts are finally coming up and he is starting to feel better. He is still throwing up but that doesn't go away for a while. His counts have to be up for 3 days before he can go home. They have been up for 2 days now. He will have a GFR done on Monday which tests his kidneys to get the right dose for his chemo next time. He will get to come home next week some time for about ten days then we will come back and start cycle 2. He still has a chemical rash under his arms, neck area, and groin area. It doesn't seem to bother him which is good but it looks like a bad sunburn. Other than that we are all doing ok. We felt like this cycle went by fast so I guess that means we are getting used to it. Thanks everyone for the constant love and prayers!