Still resting

James is doing ok. He is still pretty sick, he just kinda lays in bed and watches movies. Sometimes he will get up and play with toys but gets worn out pretty quick. The doctors are really surprised how well he is recovering. They thought it would take him longer and he would have been worse. Hopefully his counts will come up in the next couple days. He is still getting blood products about every day. He's just pretty much resting and recovering. He will remain in the hospital till his counts are up. He loves to just cuddle with his momma and he misses Zoey terribly. He asks for her every day. We are all still getting used to the new hospital. We definitely miss all our friends at Cardon's.

Day 9

James' mouth sores are in full swing. So they have put up this pump with pain medicine in it to go in a little bit a day long. They just want to keep his pain under control. He was given platelets this morning, most of his counts are low. He isn't eating at all so they have him on TPN and Lipids which is IV nutrition. It goes through his liver so we aren't too excited about that. The possibility of him getting VOD again is pretty high. He has chemical burn on his groin area and kind of on his back. It doesn't seem to bother him too much as long as we keep cream on it. He still plays with all his toys and is smiling and having fun. It's officially RSV season so as of tomorrow Zoey is no longer allowed in. It really stinks because he loves to play with his sister. She won't be allowed back in till he is pretty much finished with everything. Other than that he had a great Christmas and is just recovering. We hope he will get to go home for a week before cycle 2 starts.

Transplant Day

Well the day started off rocky, about 3:30am James woke up crying and then threw up all over his bed. After I got him cleaned up he started to shiver and shake like he was having a seizure. I called the nurse in and she took his vitals and turns out James had a fever of 104. For James anything is a fever over 100.4 so this was a pretty big fever. Usually when he gets a high fever his whole body starts to shake. His feet were also freezing cold which isn't a good sign. So they took some blood cultures and called a doctor to come check him out. They gave him some Tylenol and two different antibiotics. The doctor came and looked at him and said his feet are cold probably because he isn't hydrated enough, so they hurried a bag in and got it going quick. The blood cultures came back perfectly normal so they think he got a fever cause he was dehydrated. We finally got to go back to bed at 6. James was pretty sleepy the rest of the day. At 10 they came in to get everything ready for his transplant. They had to get it all in, in 15 minutes or less. They said usually kids get really sick when they do this but James was a rock star and it didn't even phase him. We sat and played games while they pushed the blood in. They did the whole bag in ten minutes. He stinks like sour milk, they said its from what they freeze the stem cells in. He will stink for a couple days. Other than that he is doing well. He looks really good and loves to play and be silly. He still asks to go home which breaks my heart every time but we just tell him they are making him all better. Hopefully he will have a good Christmas and not be too sick.

Rest days

Well the side effects have started to hit. Yesterday he was ok with just a little nausea but today it's worse. Poor boy feels terrible. He's thrown up a couple times today. He just wants to sit and cuddle with his momma. He's been playing with his toys still but he doesn't play as long, he just doesn't have the energy. When Zoey comes by to visit though it brightens his whole day, he loves her so much. He is asking to walk now(with help) around the room. His legs are getting so strong, they want to put a brace on the right one to help him walk a little better. Tomorrow is the "big day" as all the nurses say. He will get his stem cell transplant tomorrow morning. They have to give it to him in 15 minutes or less. I guess the stuff they freeze it in stinks so James will smell for a little while. Usually between day 5-10 after chemo is when his counts drop and all the mouth sores appear. We are hoping it won't be too bad for him this time. The nurses are ready for it though, they have pain meds ready for him when he needs it.

Chemo day 2

Today James had his second and final day of chemo. He's been doing ok, nausea has started to hit him but he has only thrown up once. He hates the baths and cries every time. He is having fun playing with all the toys though. He is a little restless and bored. No other side effects really yet, they said they will come here in the next few days. Tomorrow and Sunday are his "rest" days and then Monday he gets his transplant. We have to watch what words we say around him like home and store. Everyone keeps saying everything is going to be ok. I hope so we are definitely a little scared this time around. We hope that everything will go well and this will be his last 3 cycles of chemo ever!

Chemo day 1

Well James was admitted yesterday, he wasn't very happy about it. We got to his room and his face just lit up. They put Thomas the Train stickers all over the room and put tons of toys and books in his room. He gets to take it all home. We sat and played with most of the toys yesterday. They just gave him IV fluids yesterday and I had a lot of paperwork to do. About 5pm he decided he was done playing and was ready to go home. Poor boy has no idea how long he's going to be here for.

Today is chemo day 1. This morning they put in a foley and James didn't even flinch. He got more upset when they made him put a mask on when they changed his broviac caps. The foley is to keep track of his kidney function while he's doing this and I think they test it to see what dose of chemo med to give tomorrow. He starts chemo at 10 and will have it go for 7 hours. They changed his protocol and so he will only have two days of chemo. He will have to take a bath every 6 hours because one of the meds they give, you sweat it out. If they leave it on him it will burn his skin like a sunburn so that's why they do a really good scrub down every 6 hours. He can't have any tape on him and we will change his clothes and sheets every 6 hours also. They will continue this for 12 hours after his last dose tomorrow.

Hopefully he does ok this time. All the doctors and nurses tell me they do this all the time and he will be ok but I'm still nervous. They said he may be able to come home for a week in between cycles but we will see. He is pretty happy today but I'm sure by tomorrow the side effects will kick in and he won't feel great.

Here we go

James' pre treatment work up took a little longer than planned. He has to have a PET scan done now Friday morning and then next Wednesday he will start his chemo. We meet with his doctor on Monday to go over everything. I'm kinda bummed they won't wait one more week till after Christmas but I also understand the sooner he starts the better. He is doing so great with his therapy he can crawl everywhere. They really wear him out. He has loved all the Christmas lights and decorations. Yesterday he said he needed to open his presents. Other than that we have just been enjoying our time together.

Last precious week

Well James will be starting his pre treatment work up this week. Next week he will start high dose chemo. We are trying to do as much with him this week as possible before he goes back into the hospital. We all got to go visit family for Thanksgiving and had so much fun. We told everyone it was our last trip we would get to do till he is finished with treatment, he had so much fun playing with his cousins.

James has been improving everyday. He had physical therapy yesterday and occupational therapy today. He can crawl and move all over. He is kinda like a new baby when they first start moving and getting into things. Once they start they get better and faster at it. James is definitely that way. He can push himself up now from lying down. Now if we can get him to stand I think that would be awesome! He went into clinic yesterday and now he only has to go once a week since his counts are all amazing. It's really great to see him be himself again. He still doesn't eat much, only candy really. He is still getting all his nutrition from his tube feeding though so I'm trying not to push him too much to eat orally.

I just keep telling myself it's only 3 months. 3 months of horrible treatment and awful side effects for a life time of having my sweet boy. I cannot wait for the day that he is done and we hopefully NEVER have to go through this again. I love my sweet little boy so much and I can't picture my life without him!

Grateful for awesome doctors!

Well James had his MRI on Monday morning and then a clinic visit and X-ray right after. It took us 9 hours to get everything done. It was only supposed to take 3 ½ hours. Everything in the MRI looks the exact same from last time. They are just having a hard time deciding if its scar tissue or tumor. All his counts are up and he is doing fantastic.

We were supposed to have a biopsy done Wednesday morning but we received a call Tuesday afternoon that Dr. Moss had no intention of doing any surgery on James. We were super excited! Then this morning I received a call from Dr. Li letting me know what is going on. They are not going to do a biopsy on him, Dr. Moss does not think its tumor and since he's the Neurosurgeon whose done this a lot he would know. James is going straight to high dose chemo and transplant at PCH. He has his work up next week(which mean they check everything, even teeth to make sure its all ok) and then as soon as the work up is done he will start chemo.

We are just grateful that Heavenly Father has blessed us with such great doctors. They love James and want to make the best possible choices for him. We are sad because this means we are done at Cardons for a while and we really love everyone there. We are just praying James can make it through this last part of treatment. He's almost done!

The plan for now

We met with the doctor at Phoenix Children's Hospital, pretty much she just wanted to evaluate James herself and see how he is. They still can't tell if James has scar tissue or tumor. He will get another MRI done Monday and then Wednesday they will do surgery and take a biopsy of it. Depending on what the results are will depend on the next step. He might do more regular chemo or he might do 2 to 3 cycles of high dose chemo and transplant. She is planning on calling the doctor at UCLA that created his protocol and asking his advice. James' liver got really badly damaged last time so they want to be extra careful.

We are a little bummed they are doing surgery the day before Thanksgiving. We were hoping to have him home for one holiday. We are ready to move on though. We know the faster we start the faster it will be all over. James is doing really well and is starting to crawl. He can't go too far cause he gets  tired quick but we are excited for him.

All better...sort of

Well we heard back from Dr. Adams at PCH and she is ok to go ahead with high dose chemo without the biopsy. They cancelled the MRI so I'm glad he doesn't have to do another one. We have a meeting with Dr. Adams on Thursday afternoon to go over the plan for his next bit of treatment. From my understanding this next part is the worst. It's a years worth of chemo in seven days and then they "rescue" James with his own stem cells. I don't know why but I feel very calm about this part. I sometimes think I should be more worried about it but I'm not I just feel like everything is going to be ok. James went in to clinic this morning and is doing very well. His liver is back to normal and his platelets are up all on his own! Dr. Li is so happy and impressed with how well he is doing. They said he might start treatment next week but we won't know for sure till Thursdays meeting. We are ready for him to move on to the next phase. The quicker we get it started the quicker it's all over! We were hoping James would have started treatment earlier so he could be done before Christmas but his liver took a little longer to heal than expected. So he will probably still be in the hospital at Christmas. We are just so grateful that Heavenly Father has blessed us so much during this trails. We try to stay positive and find all the blessings we have been given.

Adjusting

We have had a busy week, sorry I have not updated. James got to come home finally! Monday evening they released him. It has been quite the adjustment. It's kinda like having a newborn that's 3. He wakes up in the middle of the night crying. You can't leave him unattended on the couch or he tries to move and falls off! Tuesday he had his PET scan and everything came back negative. Wednesday he went into the clinic and had to get some platelets. It took almost all morning long. Thursday he had another MRI done and then Friday he was supposed to get a biopsy done but it was canceled because the MRI scan was not the right one. So now he will have another MRI this week and do the biopsy if they get it right. Today we went into physical therapy. James had a fun time and is getting really strong. Our goals are to try to get him to where he can sit up by himself and maybe try to crawl. He will be going into clinic again this afternoon. He will probably need more platelets because they want to keep them above 50,000 and his are usually 30,000-40,000. So after they get the biopsy then we will find out if he is going to PCH and what the plan is.  We have loved having James home for a week. We know it won't last forever but we are just grateful for any time they give us with him.

The meeting

We had a meeting on Friday with all of James' doctors, therapy specialists, and case workers. We just kinda went over where James was in July and where he is now. Then they told us what the plan for him is.

James is going to be getting a PET scan on his brain this week because they want to make sure the tumor is actually gone. If it comes back negative they will do surgery and get a biopsy of it. Which would make that James' 5th surgery in 4 months. Then he will be sent to Phoenix Children's hospital and do 3 rounds of high dose chemo with a stem cell transplant. If the scan is positive James will have two more rounds of chemo at Cardon's.

I was a little bummed because Dr. Adams had told us that he would only do the high dose chemo once when we went and saw her. When we had our meeting I kept asking if they were sure it was going to be three times, and they said yes.  A part of me is still hoping that when we go over to PCH Dr. Adams will say no it's just once. If he does three rounds he will be in the hospital till February at least.

James gets to come home tomorrow! I'm so excited. His liver is still weak so while it heals up he gets to stay home with us. We are so excited to have everyone under one roof for a little while. James is doing really well, he has tried to eat a little bit of real food but his tummy isn't used to it so he throws up. Hopefully we can get his tummy back to normal.

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!

Finally Hit!

James was finally hit with his side affects. He has been throwing up all day everyday for 3 days now. He just can't keep anything down. This morning we also noticed his mouth sores have arrived. Poor boys mouth hurts so bad and he drools constantly. His skin is so sensitive, the tape that covers his broviac has put a huge rash all over. He had a blood transfusion yesterday and is getting a platelet transfusion today. We are hoping that James can over come all these bad side affects he has. It seems the more chemo he gets the worse it gets for him after. The nurses said that's pretty normal and also they have seen a lot worse. They said he would get to come home but I think it's going to be a while. I wish I could do something to help him, it's awful to just sit here and not be able to do anything.

End of Chemotherapy

James has just had his last day of chemo for this cycle. He has done really well! He's only thrown up twice and he doesn't have any sores yet. He is getting so strong. He keeps trying to push himself up to a sitting position. He gets pretty close then falls back down. This week he finally has been talking! He just repeats words you say here and there. When he watches movies he likes to repeat the phrases they say. His doctors said that as soon as his medicine has cleared his system he can go home till the end of the 21 days. Then we will come back and get an MRI done to see if the tumor has shrunk. We are hanging in there and are hoping that James will get to come home for mor than a few hours.

Chemotherapy Cycle 3

Yesterday James started cycle 3 of chemo. So far he's been doing good no vomit yet and he's eating and talking. Even though he's going through chemo he still laughs and is goofy. I love hearing his voice and seeing him play with Zoey. He has been doing really well in PT and OT they work with him every day. We are praying that this round will be enough to move on to the next phase. Otherwise he will have to do 2 more cycles of chemo.

In between cycles

James went to Phoenix Children's hospital and got his stem cell harvest done. They harvested enough for 3 transplants, which is great but hopefully he won't need to have that many transplants. He will go back to PCH for the transplant after all chemo is done. They sent us back to Cardon's on Monday and by Tuesday afternoon he was well enough to go home. Ten hours later we were back in the hospital. James spiked a temp of 101.2 at 12:30 Wednesday morning. Any time he has any temperature 100.4 and above we have to take him in. Of course when we get to the hospital he didn't have a fever anymore. They gave him antibiotics and admitted him back into the hospital. He starts his third round of chemo on Thursday. Every time they have sent us home or tried to send us James always gets a fever and we never get to stay. It's very frustrating! I feel like Heavenly Father is definitely testing me right now to see how much I can take. I just want my sweet boy back!

Crazy Week

This week has been a little crazy. James has been breathing funny again so they did three X-rays on him throughout the week, also he's had some tummy pain so they have been working on that. They finally think they figured out what is making him so irritated. He has been on Benadryl I guess for too long and that is what is causing him to react this way. So they stopped giving him that, they also increased his pain medication to help with his sores. The sores are getting better but it will probably be another couple days before they are gone. Yesterday they moved us to Phoenix Children's Hospial. We don't really care for this hospital. I guess maybe because we aren't used to it, it's farther away, and at Cardon's we knew everyone and made friends with all the staff. We are going to be here for a few days while they prepare for James' harvest. They have to wait for the "window of opportunity" to harvest his stem cells. They will increase his neupogen dose and as soon as his counts are where they want them they will do the harvest. When they are done I would love to say we could go home but they will probably transfer us back because James is supposed to start Cycle 3 on the 19th. Last night they had to put him on oxygen because when he sleeps he isn't taking deep enough breaths. Hopefully we don't have to stay here too long.

Irritable

The last few days have been very hard on James. Yesterday his sores got bad and he was in a lot of pain. His pain level got so bad that they couldn't get it under control and he became super irritable. He wouldn't relax at all they gave him every and any medication they could. It took him 6 hours to finally relax and stop tossing, turning, and crying. Well tonight at the same time it happened again. His sores are even worse and he got a fever this morning. They couldn't get his fever to go away and it got up to 103 degrees. On a happy note we got to meet with Make A Wish this morning for James. They want to grant James a wish but since he can't talk we are waiting till he can to let him make his wish. Even though he is in pain he still laughs and picks on his little sister. It makes him happy to pick on her and she takes it like a champ. She continues to be super protective of her brother. He will probably be in the hospital till his next cycle unless by a miracle it all gets better quickly.

Also we are selling armbands that say Team James if anyone would like them. They are $3 a piece or 4 for $10.

Tough

The last few days have been pretty tough for James. He has just been throwing up all day today and yesterday and now has some bad mouth sores that go down to his tummy. The sores are what is making him sick. He was supposed to go home today but since he's been sick they decided to keep him longer and try to get it under control. I started crying when they told me he had to stay and once I start crying I have a hard time keeping it together the rest of the day. I know its best for him to stay here but it just really stinks. I would love nothing more than to scoop him up and take him home. He has been doing really great with his PT and OT. They brought a big exercise ball and he loved it! He tries to climb on top of it all by himself. He is getting really strong. He can stand up pretty good(with a little help) and is holding up his head really well. He doesn't talk much but that's because of all the mouth sores. I bought him some raspberry sorbet tonight and that seemed to feel pretty good on his throat. He's still fighting strong, his doctors are pretty impressed with how well he is doing.

End of Cycle 2

James is doing really good! He has finished his second cycle of chemotherapy. He has only thrown up once or twice and so far and no bad rash or sores yet. If all goes well he can come home Thursday morning. He is getting stronger everyday. He loves to play and be goofy. He loves laughing at his sister. Hopefully he will be home with us for a week or so before we have to start the stem cell harvest and chemo again.

Cycle 2 Day 3

                                                   

James has one more day left of chemotherapy in this cycle. He has had a pretty good last couple days. This evening though it went down. He got a fever, threw up, has constipation, and his heart rate and blood pressure are up. He really doesn't feel good, poor boy. He was like this last time though. I'm more worried about the medicine they give him tomorrow. That stuff is the worst for him. Once that medication has cleared his system and his neupogen levels are up he will to the stem cell harvest. I'm hoping to be able to take him home between chemo and the harvest since it takes him a few days to go back up. He's such a little fighter though, I am so proud of him!

Cycle 2 Begins

Yesterday we went to Phoenix Children's Hospital to talk to the doctor there about the stem cell harvest and transplant. It was a little depressing to hear all the horrible side effects that could happen. I'm hoping and praying that James will have very few side effects from this whole thing. He starts his second cycle of chemotherapy today.  And after he is done as soon as his neurogenic counts are up they will do the stem cell harvest. We will have to go to PCH to get it done because Cardon's is not yet certified. He will have to stay there for about 24-48 hrs to have it done. We hope James will get to come home for a few days before going back for cycle 3. Today is just a hydrating day with a few chemo meds. He has been giggling all morning. He especially finds it funny when Zoey cries(typical big brother). He is getting stronger which is good but also bad because now he can fight back more. He walked for the first time yesterday with some help of course but he did a good job!

Good Day!

Today James had a very good day. He has been silly and laughing off and on all day. His breathing is still quick and short. They are thinking of doing another MRI just to check out his brain. They think because of where the other tumor is it might be signaling his body to breath the way he is. Other than that he is doing really well. All counts are up and great. His weight is still not up but it's not down either. He will most likely stay in the PICU until his breathing regulates. They told us the nurses on the oncology floor are just nervous to have him up there so we told them we would rather have him stay in the PICU anyway. I like having nurses watch him more carefully, it's comforting to me. We are still on for chemo cycle 2 for Thursday. I hate to see him go through that again especially because he's just getting back to normal it seems.

Back to the PICU

James has had some trouble breathing the last couple days. His breaths are just short and quick like it takes a lot of effort. So they monitored him and his doctor sent him back down to PICU. He just wants him watched carefully and that's what the nurses there are trained to do. He had an X-ray and an echo done and everything came back normal. No pneumonia!! He has his consult over at Phoenix Children's Hospital for his stem cell harvest on Wednesday. His next cycle of chemo was supposed to start Monday but they pushed it back to Thursday because he isn't gaining enough weight and they need a little more time for his body to recover. PT is still going he really likes to play with the toys and do things when they come. On Friday we got to have our family pictures taken here at the hospital. There is this photography group that is called Flashes of Hope and they come take pictures of all the cancer kids and their families for free. They set up there own little studio and have a makeup artist and all kinds of fun things for the kids. They give you a cd with all the pictures and a few print outs also. It was really sweet! I wasn't sure if I wanted pictures of James like this but then again I would love any picture of him with us. They are thinking we might get to go back to the oncology floor tomorrow but we will see.

Day 33

James had a rough night last night. He kept spiking a fever a few times last night. They gave him his platelet transfusion then did blood cultures and found out his hemoglobin was low so then they did a blood transfusion. His ANC is 160 now!!! So that is good. They also found out that James has bacteria in one of his lines so they are going to try and get rid if it. They are also trying to get his pain from all the sores under control. He hasn't really been sleeping so one goal is to get him to sleep. He will most likely be in the hospital till his next cycle of chemo. He had PT and OT today and participated very well. Also he is talking today! It's nice to hear his sweet voice! He usually has one good day a week and today must be it. So grateful for the improvements!

It was nice while it lasted...

Well we had a lovely two days home together. This morning James got sick to his stomach and spiked a fever. I wasn't really all that shocked because yesterday he had been very warm all day. So we hurried to the clinic and of course we get there and he doesn't have a fever anymore. This is not the first time in his life he has done that. When he was a baby he got a fever so I hurried him to the doctor and he was fine by the time we got there. Anyway they went ahead and checked his blood counts and some were low. His ANC is at 20 now but his platelets dropped down. They also did a CT on him since he won't talk or anything. They just want to make sure his shunt is ok. So the plan is to keep him at the hospital and monitor him and try to get his blood counts up. They can't start the next round of chemotherapy until its up. Once everything is up we can go back home for a couple days. Some good news the CT looked really good. Dr. Li said his ventricles looked very nice and his tumor has shrunk a little!! I was so scared they were going to say the tumor grew back some or got bigger. Hopefully our poor boy can start to feel better. You can just look at him and see how miserable he is.

Nurse Mom!

Adjusting to life at home has been crazy! James is doing good just resting. It's more crazy for me because all of a sudden I am the nurse. James has 7 medications he takes morning and night. Some are oral but most are not. Some are only on the weekend and some are injections for a certain amount of days. I can successfully put in his NG tube and flush both his lines in his broviac. Next week they will certify me to change his dressing as well! It definitely makes me think about just going to nursing school. He had his speech evaluation today and they think he will be in therapy for 3-6 months. He goes into clinic tomorrow and then has more therapy this week. Other than that not too much has happened today. It is so nice to be home with my whole family! I am so glad we get to spend a week together before he has to go back to the hospital.

Home Sweet Home!

Last night James threw up a couple times and then I noticed he was getting a rash so I was afraid he was going to have to stay longer. This morning Dr. Onimoe said his platelets were up and everything looked good. His ANC is still zero but she said that is normal after chemotherapy. Then she told me we could take him home! Two hours later we were driving away. Now at home he has just been chilling on the couch not talking or moving. He doesn't feel good but hopefully he will perk up a little bit. He has to go back to clinic on Tuesday and then a week from Monday he starts cycle two of chemotherapy. I'm so grateful that we all get to be at home for a little bit before we go back to the hospital. Lets just pray he gets no fevers so he can stay home!!

Day 29

Today James is doing ok. He is in quite a bit of pain today. His ANC is still zero and his platelets are low also. He received a platelet transfusion this morning to help bring it back up. The transfusion won't help his ANC they said. He has also started to loose his hair. This morning his pillow and bed just have hair all over. We are just gonna shave his head cause he has lots of hair. Other than that he had PT(physical therapy) this morning and did really well. Dr. Onimoe said if his counts look ok and no fever till tomorrow he can go home tomorrow. She said we don't have to wait till his ANC goes up so that is good news! One day at a time!

Chemotherapy Cycle 1

James finished his first round of chemo on Monday. He has only thrown up a couple times, the worst side effect is really bad rash on his bottom and sores in his throat. He does physical therapy, occupational therapy, and speech therapy to help build his strength back. He can now move his head to the right and can almost sit up by himself. He was supposed to go home on Wednesday but he spiked a fever and had to stay. Now his absolute neutrophil counts are zero so he can't leave till that goes way up! He doesn't talk much cause it hurts his throat. He gets worn out pretty quick also. He loves to be held and rocked! Thank you for all the prayers and love. It's amazing how many people are praying for James. We definitely feel the love!

Donations

Sam's Aunt helped us set up a donation account for James. If anyone would like to donate to help pay for James' medical expenses all you have to do is go to any Wells Fargo and say you want to donate to an account. It's under mine and my husbands name. You don't have to bank with them or anything. We are working on getting it so you can donate online, as soon as that is ready I will let you know! We are so grateful for those who have already donated to James!!

First few weeks

I thought I would just summarize what all has happened with James so far.
James has been sick since the beginning of April. He had lost 5lbs since then. No one could figure out what was wrong with him. His  pediatrician checked for diabetes and that came back negative. Then they put him on pediasure for a few weeks but he still was throwing up and not gaining weight. She then sent us to a GI specialist. The GI specialist had him get an endoscopy and an upper GI done, both came back normal. They put him on reflux medication and appetite stimulants but nothing seemed to help.

After 3 months of him being sick and no one knowing what was wrong they admitted him to the hospital to put a NG tube(feeding tube) in him to try to get him to gain weight. They also did a head MRI and that is when they found two tumors in his brain. One in the fourth ventricle and one in the third. The plan was to take him into surgery two days later to remove one tumor. They also found tumor that has slugged down to the base of his spine. They removed the tumor in his fourth ventricle but the one in the third cannot be removed because its too central and is wrapped around all his nerves. They also put a drain in his brain to get rid of the spinal fluid build up. .

A week later they removed the drain and put a broviac line on the left side of his chest where they will administer his chemotherapy medication. The next morning he was not responsive and his eyes looked horrible. He had thrown up a little blood so they rushed him to surgery and put a shunt in his brain. 

They had to scrap tumor out more on one side than the other. Because of that James has weakness on his right side. He has a hard time talking and moving. He can't sit up or stand by himself. He will have a long road of therapy.

We were told he had Medulloblastoma Brain Cancer and sat down with the Oncology team and figured out a plan.  He will have 3 cycles of chemotherapy. One cycle is 21 days and chemotherapy last one week. After the third cycle he will get another MRI to see if it helped. He could possibly have two more cycles after. At the end he will have high dose chemotherapy and stem cell transplant.