Great news!

Well James has had 3 MRIs this week as well as a lumbar puncture. We found out this afternoon that all tests were negative! No cancer cells! Dr. Adams wants to do a PET scan now just to be 100% sure. He should be able to come home for a little bit before going over to PCH. If the PET scan is negative he will be going to PCH to do his High Dose Chemo and stem cell transplant. This will be the most intense chemo he will ever have. Pretty much it goes in and kills everything! They said they pretty much bring him to deaths door and rescue him with his stem cells. We are really glad the tumors are all gone but we know the next part is the hardest part for James. We are just excited to get this aweful thing over with. He has been laughing and playing more everyday. Tonight they are giving us an hour pass so we can take him to our ward trunk or treat. Thank you for the continued prayers and love.

One more procedure

James had another MRI this morning on his spine. They can't tell if the spot on the scan is a tumor or scar tissue. Dr. Moss was going to do surgery and try to remove some of it and take it for biopsy. This afternoon he said he wanted to change the plan. He felt like it wasn't tumor and he didn't want to open James up for no reason. Instead he wants to do a lumbar puncture tomorrow and we should get the results tomorrow or Thursday morning. We are having our meeting Friday afternoon to go over everything. We are hoping that they will tell us he can move on to the next stage. He has been continuing to make improvements. We take him out and about in his little wagon. He also has been going to the playroom and having fun with all the toys.  They said he might get to come home for a little bit while he still heals. Let's hope!!

Waiting game

James was moved last night back up to Oncology. They took his drain out of his head Friday afternoon. Yesterday he had a quick MRI to see if the fluid is gone. There is a tiny bit of fluid still but they said it should go away on its own. His tummy has started to get a little big again. They are doing an ultrasound in the morning to see how things are. We are having a meeting with all the doctors on Tuesday to go over everything. Also Dr. Adams from PCH called and said she wants Dr. Moss to do a spinal tap and have a biopsy done on the tumor in his spine. Pretty much if the biopsy comes back that it's malignant he will stay at Cardon's and do two more cycles of chemo. If it's benign we will go to PCH and he will do high dose chemo and stem cell transplant. We are praying that he will get to move on to his next phase. He has been doing really well. We go and throw coins in the fountain out front a few times a day. Also today he played with his dad in the playroom for two hours. He is so bored sitting in his room. He is doing better! His liver is still not great but it's just going to take a little longer to heal.

Getting better

So James had his surgery on Tuesday afternoon. They told us it would be in the morning but they were pretty unorganized and then his neurosurgeon changed the procedure the very last second. They were supposed to put two more shunts in his brain but apparently no one told Dr. Moss about the VOD problems James was having. Instead he changed the shunt he already has to be programmable and then put a drain tube on the right side of his head that comes out and drains into a bag. It was less invasive and Dr. Moss felt way better about. James had a CT scan Wednesday morning to see how it was looking and it showed that lots of the fluid had already been drained. Dr. Moss plans on removing the drain either tomorrow or Saturday.
Also Monday night James' tube in his belly slid out. They decided to not put it back in and see how he does. So far he is doing great his stomach isn't getting bigger. They can tell by his levels that his liver is still not 100% but it is getting better. I'm just glad he doesn't have that in his stomach anymore.
He's pretty cranky lately. He doesn't like anyone but mom or dad to look at him, touch him, or even talk to him. We are hoping that he will start to be less cranky as the pressure in his head goes away. They said he might be going back up to the 7th floor on Sunday or Monday. It just depends on how he does.
Next Tuesday we are supposed to have a meeting with the all the doctors about how James is doing and what the next steps will be. They are waiting to hear from Dr. Adams over at PCH to see if he can go straight to High dose chemo and stem cell transplant or if she thinks he should do two more cycles of the regular chemo. I am praying that he will be able to move forward to PCH. Our poor boy has been through so much and he deserves some good news!

The results are in....

James had his MRI Thursday afternoon. It took them 4 1/2 hours to scan everything. Friday morning when Dr. Smith came in, I knew by the look on her face it wasn't good news. She said we had good news and bad news. We will start with the good news, the tumor in James' brain is no longer there and the one in the spine is half the size it was. Bad news is James has a hematoma(a bleed) in his brain and fluid in his right lung. Also we can't do anymore chemo till he heals and his tumor has a really good chance of coming back while he is healing.
The plan is James will be having surgery either Tuesday or Thursday. They are going to put another shunt in his brain to drain the blood. They will leave it in for 6 months then take it out. He will be at high risk for seizures now though so they will put him on medication. They also have been giving medicine to try to get the fluid out of his lung. If they can't get it out they will have to put a drain in his lung.
His drain in his belly is still there. It's draining a little less everyday. They said it's just going to take a while to heal. He still asks for soda and juice. He doesn't really want to eat but that's ok. Hopefully he heals quickly so we can finish his chemo.

Mmmmmm

James has gotten a lot better over the last few days. All his counts are up and his rashes and mouth sores are gone. He still has the tube in his tummy but they clamped it this morning to see how his body does. He still gets platelets because of the tube in his belly. They scheduled the MRI for Thursday so that he could have a few days of feeling good before they sedate him and we move on. He has been off oxygen for a couple days now. He is also asking for soda. He is so cute every time you put the spoon close to his mouth he says "mmmmm" it is so funny. It always makes all the staff here laugh. He has been talking more and is definitely acting like a 2 year old. He throws tantrums when we tell him no. You know he's feeling better when the tantrums come back. He doesn't eat anything orally although he asks for things. As soon as I bring him what he asks for he decides he didn't want it after all. If he does alright with the tube clamped they will remove it either tomorrow or Thursday morning and then we will go back to Oncology. Thank you for all the love and prayers. We are asking all to please pray we get good results from the MRI!

Yellow boy

James is doing alright, as good as he can be expected. Because his liver isn't working very well James looks like he us jaundice. They said it would go away on its own once his liver is healed. He has started back on his feeds. He has gotten sick a couple times but that's pretty normal for him. He is continuing his therapy and doing a good job. Today he sat up in bed by himself. They won't be doing an MRI this week because James is still on quite a bit of oxygen. When he sleeps his oxygen says go down and for the MRI he will be sedated so he needs to start breathing better first. He is loosing a little less fluid each day which is good. As the bag starts to not fill up as much that means his body is starting to work better and then they can take the tube out of his belly. He continues to ask for soda and apple juice. He is pretty sleepy all day. Over all he's doing alright.

Back and forth

We have had a busy week so I'm sorry for not updating. Tuesday night James was moved to the PICU because he was just requiring a lot of attention. He has so many meds right now he has to have one nurse focus completely on him. They found from the CT scan he has a sinus infection so that is part of the reason he keeps getting fevers. They are just going to treat it with antibiotics for now until his platelet counts come up. They may go in and suck all the fluid build up out but they said it might go away on its own. Thursday they moved us back up to oncology and we hoped he would get better and be able to come home. James' stomach had grown bigger so they worried about that. Friday night was not a good night. James had extremely high blood pressure and was having a really hard time breathing. They put him on oxygen and did a chest X-Ray, which came back normal. Saturday morning his blood pressure was still really high and his stomach grew another centimeter so they transferred him back to the PICU that morning. His tummy was so huge we kept saying he had a "pregnant belly". His belly button was popped out and his skin was so tight. Dr. Slinko came and took one look at James and knew immediately what was wrong with him. His eyes were sunken in and a little yellow. He said he had Veno Occlusive Disease(VOD). Pretty much his liver isn't working properly. The fluid is going into his liver one way and coming back into the abdomen, thus causing his stomach to grow. They did an ultrasound to confirm it. They gave him platelets to help protect him before the procedure. As soon as the platelets were done Dr. Slinko came in and inserted a tube into the left side of the abdomen. It will drain the fluid into a bag. Last night he drained a little more than 2 liters of fluid and his stomach is still pretty big. They said the tube will stay till it has drained a certain amount of fluid and then they will remove it. James is still on oxygen and is still in pain. His mouth sores are getting better but the rash is still present everywhere. He will stay in the PICU until, the tube in his belly is removed because the nurses upstairs are not able to take care of it. He is supposed to get his MRI done either Friday or a week from tomorrow. We hope and pray that the tumors will be all gone so he doesn't have to go through anymore chemo. If it's gone he will have one round of high dose chemo and that is supposed to kill everything. He is still fighting strong and doing such a great job. I am so grateful for my sweet little boy and the time I get to spend with him, even if it is in the hospital!

Poor Boy!

James isn't doing very good. He is still throwing up at least twice a day. His vomit has brown blood in it because his sores are so bad. He has had three platelet transfusions and is getting another one today. He has rashes all over his body. The rash on his tummy has started to blister. His poor mouth hurts so bad he cries when we put chap stick on. They told us he might be going back to the PICU just because he isn't doing very well. He is talking more everyday and has been asking for food and soda. He can't eat so he just sips on sprite all day. He is getting a CT scan of his tummy today because it's very large and hard. He keeps getting fevers but they don't know why. They think he has an infection some where but can't figure out where. They are looking for it everywhere. Hopefully they can figure it out and he will get better enough to come home for a day or so. We still have lots of armbands if anyone is interested. We are grateful for all the love and prayers. Thank you!