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.