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.