Hello Everyone,
I wanted to start off by asking everyone to pray for the other little boy who has CGD that went through transplant 100 days after James. Samuel has come across many of obstacles along the way and needs some prayers right now. We all know how much the power of prayer actually works because we have seen it save James’ life. Thank you for helping it means the world.
*We had a doctor appointment today and all of his numbers look good. His T-Cells and B-Cells are still 100% donor, which is GREAT news. His hemoglobin has been hanging low the last couple of months but they are watching it closely.
*We were surprised today because they took him of Tacro, which is his last immune suppressant medication. This is a huge milestone because now the other medications will start to taper off as well. (3-6months from now)
*Dr. Douglas also let us know that she is thinking that she wants to take his broviac out and put a port in instead. This would mean he could shower and take a bath. Come summer time he may even be able to go in the pool, which he hasn’t been able to sine he was months old. They still need a line in there because of so many blood draws and possible IV’s.
*We still are VERY limited on what we can do. Still unable to visit anyone’s house or go into public. We did bring him to a nature preserve the other weekend, which made him so happy.
*His hair looks great, I don’t think there are any bare areas anymore=) He now weighs 35lbs which is amazing; it is so nice that he has his appetite back.
*Special thanks goes out to my long time best friend Nicole Gaul. She set up a fundraiser at her school for James. She surprised me and acted like she wanted to skype James just for her class and it ended up it was for the entire school. They were all wearing the BELIEVE t-shirts and Super hero shirts in honor of James. It was so amazing to see all the students over at Kennedy School. They showed how enormous their hearts are. Thank you all so much.

Sorry about the long post…. I hope to have updated pictures soon so you can see the progress this Superman has made. We feel so blessed that he has been doing so well during this journey and we want to thank you all for your prayers and thoughts.
BELIEVE!!!
Dan, Sam, and James

Hello everyone. We just wanted to write a blog to update what has been going on with James. Sorry for the wait I think I will do bullets again because I think it is easier

* Today is day 165 can you believe it? Nov. 20 (my parents 40th wedding anniversary) will be 2 years since we found out James had CGD. This little man has almost died, lost a lung, had a bone marrow transplant, and has been cured and he is just over 3 years old. He has taught us so much about life, to appreciate every minute of everyday, and to never sweat the small stuff because guess what in the long run it doesn't even matter.

*His 100-day work up results we good. He had a procedure done to take bone marrow out of his hip to look at how it is producing. It looked really good. Hearing test showed that he lost a little more so we go back in three months to check it again. Fingers crossed it will stay the same. He is still 100% donor, which is fantastic!!

* James dressed up as a doggy for Halloween and we were allowed to go to 4 houses. James had a blast he was so excited to be outside it was amazing to see. He made mommy dress up as a kitty cat and daddy as a pirate. He ate so many Reese's Peanut Butter Cups. His new favorite!!

* Doctors visits were moved to every other week and we only see the doctor once a month and the other visit is just for labs. Twice a month can you believe that?!?! We were going three times a week and now just two times a month. That was a shocking surprise. Of course I was nervous about it but the docs said it is a good thing that they don't need to see him. Yay!

* Started an inhaler for a cough that he has we go to the lung doctor in December. He is doing so well with it. Oh and he is off blood pressure meds and steroids. Now we are tapering the last immune suppressant that will take 16 weeks.

*James' appetite is back and he is now staring to gain weight. He is definitely getting taller. Our little baby in now a little boy.

What we are thankful for this Thanksgiving
~ James progress through this transplant recovery
~The donor that cured our boy
~Our families that have been there for us through it all
~Our friends that have lent a shoulder or an ear to comfort us
~The doctors that have had the knowledge to get James through this
~That Dan and I have had each other
~ As always thankful for all of our health and happiness.

This holiday season is a very emotional one for us because we can't help but think about how transplant could have went and how thankful and lucky we are that it didn't. James is truly a miracle. He has brought so much joy to so many people's lives. He has brought back old friends of ours and we have made new ones because of him. Like everyone says we can't wait to see what the future holds for this kid because we know it is going to be something special. Have an amazing Thanksgiving and Holiday season with your families. Know how much we love you all for your continued support. Enjoy and celebrate every waking minute!

BELIEVE
Dan, Sam, and James

Hello everyone....just wanted to write a quick blog so everyone is caught up on James' progress. On Wednesday this week James went into the hospital to have some bone marrow taken out of his hip bone. They wanted to test it to see how his marrow is working. Before we went into the hospital we had to go get his blood drawn and be seen by his doctor at our clinic. Our Dr. walked in and said she had some news we had been waiting for. I knew it had to be the CGD test results. Sure enough it was and she let us know that his immune system is functioning at a NORMAL level and the part that wasn't working before IS working now....which means the CGD is GONE!!!!!!!!!!!!!! And yes I kept the paper that proved it...I'm thinking I might hang it above my bed So as long as James holds onto his donor's marrow he will not have any problems with CGD coming back. Great news!!! Then we went over to the hospital where they had to put James out to get his marrow which ALWAYS scares us to death. But like always the kid handled it like a champ. Woke up a little groggy came home, got a huge monster truck from Daddy for being so brave and snapped right out of it. Running around again like a crazy man. I would have stayed in bed for like two days and milked it=) Today we got the results of his marrow and it is working beautifully!!!! This has been a great week for James. Now Monday he will have a chest x-ray and a hearing eval and that will finish up his 100 day work up....can you believe it 100 days out already. Oh and the hair...ummmm....has some killer bangs and some fuzz but thats about it. Also James' best bud Colin got his trach out this week and is doing wonderful so we are all thankful for how well our boys are doing.
 Tomorrow the Mottola family is having their The 3rd Annual Captain Jim Mottola Memorial Golf Outing and this year they have graciously chosen for their cause and proceeds to go to James ....we are hoping the rain can stay away so everyone can enjoy a nice round of golf and a great dinner. We are incredibly touched and honored to be a part of this outing. There are no words that can express how thankful we are, they will be forever in our hearts. We are truly amazed to see how many people out there care. Thank you all so much for your love and support. We would have NEVER been able to get through all of this without you. We still have a journey ahead of us but it is SO nice to finally see a light at the end of the tunnel.
BELIEVE!!!!
Dan, Sam, and James

Hello everyone....thought we would give you all an update about whats been going on...

*Every month they do a blood test to see how much of James T cells and chemistries are him and his donor. We are very happy to say for the last 2 tests James is showing to be 100% donor which is GREAT. Now that can always change which is fine too as long as he holds on to the donors cells.
*James 3rd birthday was great!! We decorated the house with balloons so when we woke up he would be surprised. We had an early celebration with Pa before he left to go back to Chicago. Then we had a "party" for him. James was so excited because he was finally able to see his best buddy Colin. So the party consisted of mom, dad, Papa, Nannie,Melissa, Colin, Nick, and Audra ( Colins parents our friends and neighbors) It was so nice to see how excited James was to have people over for his birthday. This birthday is going to be one we will never forget. We have so much to be thankful for and to celebrate. I was pretty emotional, just to have my boy and to be able to be celebrating his 3rd birthday was the most AMAZING feeling I have ever felt.
*Rash: his rash got a ton better in the last couple of weeks but in the last few days it looks like it may be making a comeback. It may be because they are weaning his steroids and his Tacro level was low during the last wean but we go tomorrow to get it looked at again. We just hope we can catch it before it goes crazy like it did before.
*Hair: James is starting to get a couple of hairs come up. Looks so cute like a little bird=) I cut off 13 and 1/2 inches and donated it to Locks of Love.
*Speech: Today he had a speech eval because the doctors thought he was needing one because of his hearing loss. My mom and I took James today and I felt like I was the one going to go take a test. Nervous....just because I didn't want another person judging and telling us whats wrong with our boy. Dan and I never thought he had any problems but our docs wanted him checked out. James once again BLEW them away with how smart he is and the words he does say different are completely age appropriate and not caused by his hearing loss. YAY a GREAT appointment today. So PROUD of James.
*Attitude: James has been in some of the best moods we have ever seen him in lately. He is running around like a crazy man and playing trucks and cycles all the time. Its amazing to look at him and think about what this little body has been through in his little life already. I mean I really can't believe it. Brings tears to my eyes.

We will update again soon. Thank you all again for your continuous love and support!!
BELIEVE
Dan, Sam, and James

Hello everyone....things have been very busy since we have been home. James is very happy to be home. He has a really bad rash that covers 80%of his body. It is a graft vs. host rash. To explain it in a way that we all can understand....his one med tacro is used to prevent graft rejection and it needs to be at a therapeutic level in order for it to be successful. James' fell pretty low for over a week so his body started reacting to the donors cells and caused this crazy rash. He isn't complaining or itching too much which makes it easier but it is very hard to look at. They are changing the levels of his meds to try to get this under control. The GREAT news is that he reached another milestone...they took a blood sample from James and it told them how much was James and how much was the donor. Surprisingly James is at100% donor which made the doctors VERY happy. They said it is early to see this and they are really happy to see how well he is doing. Graft has taken and is WORKING!!!!!!! Amazing news. We wanted to give you all a quick update to share our great news. We will continue to post sorry it has taken a while...just trying to get back into the hang of things at home with meds and IVs. Continue to pray for James and for this graft vs. host disease rash to go away quickly. We thank you all for following James' story. BELIEVE!!! Dan, Sam, and James

Well we were going to post today that we went home yesterday. James was soooooo happy. He figured out how to get around the house with his heavy IV fluid bag and pump. He dragged the bag around...it was so cute. He ate a whole bowl of shells and cheese! The nurse came to our house at 8:00pm to show Dan and I how to do the TPN(nutrition)IV. She was there until 10:15...all I wanted to do was shower in my own shower and sleep in my own bed. We were getting ready to hit the hay when the pump alarm goes off. We have no idea why so I called our home care provider. We figured it out before they even called back, James had twisted his line shut by the top...duh! So I showered and went to bed and I started to hear James breathing a little different.(fever different) I run downstairs and get both thermometers and his temp was only at 99.3, 99.6......so needless to say I was up the whole night listening to him and taking his temp. The doctors rule is if he is at 100 degrees then we have to bring him in. Well no rush to the hospital at night or anything, we already had a clinic visit set for 8:30am.we brought James to clinic and he got even wamer so they decided to have him admitted. The good thing was since we just left yesterday our same room was still open. James is doing great though...he is just a little more tired. They just need to watch him closely for infections. They started him on 2 different antibiotics. We will keep all of you updated. Pray for our Superman to get back on track.....oh I forgot to tell you when Dan left here after a long day he got home to find out our pool filter/motor is broke. Lol can you believe it. We just laugh about it BELIEVE Dan, Sam, and James .....sorry about the spelling it's late

Sorry it has been a while since we have posted just been busy chasing James around....well if you read the title then you all now know James has engrafted!! He needed three days with his absolute neutrophil count to be above 500 and he blew those numbers away, which again the doctor was surprised with how fast it happened. What engrafted means is that the donors cells are coming in as the should and the donors marrow is working. There are a couple more milestones in the next couple of months that he will need to meet but engraftment is the most important because it either takes or it fails. To know that our little boy will have a new immune system in a couple af months is the most amazing thing in the world. The official day of engraftment is June 16, 2011, a day that we will never forget. James' new beginning!!! He has gotten a little better with taking his medicine...we are going to go broke from the rewards he is getting (cars,trucks, balls) but we think of what he has been through in the last two years and we know how much he deserves it. Today we moved over to the new hospital....it is beautiful!! The view is much better than our old 2nd floor view (roof and pipes) now we are on the 7th floor and look at South Mountain. This has been a crazy two years. We had no idea what to expect coming into this bone marrow journey. It was one of the scariest times because everything they were going to do you had NO idea what reaction James was going to have. We want to thank each and every person for each and every prayer. There would be no way we could have gotten through ALL of this without you all. We are so lucky to have such amazing friends and families! We know this journey isn't over and we will still have some bumps along the way but we feel confident because we know how strong our little boy is. This Superman thing is no joke and I think he has proven that to all of us. We will keep you updated as the days go on and please always BELIEVE!!!!!!!!Dan, Sam, and James

Hello everyone....It's getting late so this won't be too long. Just wanted to give a quick update. James is doing very good. He is still breathing quick but they hope that he will slow down as his new cells come in. His blood pressure is up now due to being on steroids, so he is on one med right now to lower it but if he goes above 115 again then they will add another one. They are trying to switch some of his IV meds to oral now. They did one today and added an oral blood pressure med. Let's just say...not a good idea. He took one dose and has fought every one since. When I say fight I mean kicking, hitting, spitting and screaming. So the good news is that he has his strength back the bad news is that he will be on at least 10 orals when we go home and we won't be able to leave until he takes them here. Sooooooooo we have to figure something out His cells are coming in which is fantastic we will let everyone know when he has engrafted.(the transplant took) I know this blog is short but mommy is tired both physically and emotionally. Thank you all for the cards and notes. We really appreciate them. Continue to pray for our Superman. BELIEVE Dan,Sam and James

Ok everyone- so James is in a better mood today. His breathing is still very fast but Dr. Douglas came in today ands explained to us what she thinks is going on. When James had his lobectomy he lost a lot of is lung which left him with empty space. His liver, doing what nature does, filled the empty space and one of two things/possibly both happened. One--the liver is inflamed crowding his lung. Two--his liver is tender and he breathes fast so it doesn't hurt. After reviewing the CT from yesterday they know his liver is slightly larger than in April. In regards to the tenderness it's hard to check for that because James' liver is so high (in lower chest behind ribs) it's usually a very routine check. James says nothing hurts and for the most part was back to his normal self today. James is on a steroid to help with things after transplant. One of the things it helps with is liver problems. So we could see things go back to normal shortly. Until then doctor's are keeping a very close eye on the situation. James also woke with a lot of hair on his pillow cases. It's happening!! He's losing his hair. He started itching his neck and face and that's when we noticed all the hair. Sooooo straight up prison style, James got buzzed in the room. Child Life brought by a surgical buzzer and we shaved James' head. He looks really good and makes sure he shows everyone his haircut. Just like a warrior James continues to press on. It's rare for anything to bother him and his energy is always at a high..he continues to amaze his family,friends,doctors and nurses.... most of all his parents. Believe---Dan Sam & James

As the night nurse was switching shifts yesterday James was pointing to his chest saying it hurt. His respiratory rate was 72. 20-30 is normal for a kid his age. They continued to watch James all night. Around 11 he was working very hard to breath and they decided it was time to call in the on call doctor. She came in and couldn't believe how fast he was breathing. They did some blood gas tests and they came back pretty normal. I laid at the foot of james' bed with my hand on his chest. I tried to mimic his breaths and it felt like I was going to pass out. Not going to lie started to get very worried. The doc came back in at 1230 and said they were going monitor him closely all night and then evaluate him in the morning. So who do you think monitored him all night?--his momma. This morning James' respiratory rate was still around 70. Dr. Salzburg came and spoke to Dan and I about a game plan for the day. His numbers didn't change much so she said she was stumped. His blood pressure and oxygen levels were good but he is working so hard to breath. She said they were going to give him blood and platelets. The blood might help give more oxygen to his blood. He had a breathing treatment and now we are waiting to go downstairs for a CatScan. They want to try to rule things out, like infections or viruses. We will keep you all updated once we figure out what is going on. Please rev up your prayers so we can help James over this speed bump. BELIEVE Dan, Sam, and James