BLOG.JAMESZINTAK.COM

Feb. Update

2012-02-08T02:41:06Z

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

Thankful

2011-11-16T03:02:56Z

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

So Long CGD!!!!

2011-09-10T00:24:25Z

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

100% strong on Day 69

2011-08-12T00:27:25Z

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

Update

2011-07-14T01:19:57Z

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

A little tease...

2011-06-25T06:10:54Z

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

Engrafted!!!!

2011-06-22T06:27:37Z

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

Thursdays update

2011-06-17T05:59:54Z

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

Update

2011-06-13T23:58:12Z

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

Long night

2011-06-12T20:00:13Z

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

Day +4

2011-06-08T01:29:36Z

We wanted to let everyone know James is doing great. His numbers are where they should be (low) and his energy is high. He was playing all day today until 6pm when we fell asleep. His bottom is very sore because of all the diarrhea caused by the chemo. The doctors are very happy to see how James is doing. We know this may not last but we are appreciating EVERY minute of every good day we have. We still have about a week until his new cells start to grow. Right now they are sort of floating around trying to find where they belong. James is getting almost all of his nutrition now through IV. He isn't eating any solid foods which the doctors expected. Saturday thru Monday I was out of the hospital due to either an allergic reaction to bactrim or strep. We are waiting on the results of my strep culture...I didn't have a sore throat so I'm thinking it was an allergic reaction. Dan was amazing with James while I was gone, making fish, get well cards, taking pictures, and playing kickball. I am so thankful to have such an amazing husband!!!! We pray that maybe we won't see bad days...maybe James really and truly will show everyone once again he is Superman. If we do we know we have all of your prayers to keep him strong and to protect him from any infections. James gets his last dose of chemo on Thursday. He got it on days +1,3,6...After that is done he will be finished with all of the hard drugs and then we will be waiting for his cells to start growing so we know his transplant took. Thank you all so much for all your support and prayers. BELIEVE!!!!! Dan,Sam, and James

THE GIFT

2011-06-03T18:43:59Z

It's 10:29a AZ time. James' transplant started @ 9:36a. Several doctors/staff are in the room to oversee everything. James was on his computer for about the first half hour then watched a little mickey mouse and is now crashed out. the whole deal will last a little under two hours. There are several things doctor's look at: blood pressure,allergic reactions,heart rate,breathing,oxygen level etc... Dr. Douglas, 1 of James' main doctors is sporting a superman tee keeping true to her word. We know the donor is somewhere in the Midwest. Pretty crazy!! Yesterday the donor entered the hospital and underwent the procedure to extract his marrow.(after several weeks of testing). He (33yo) went in sometime early afternoonish was put under with a general anesthesia and the marrow was taken. The procedure doesn't sound pleasant for the donor and takes approximately 8 hrs start to finish. "He" returns home the same night with pain meds and will probably be out of commission until Monday. Pretty amazing what people will do for someone who doesn't know a thing about us, James or even why he is giving his blood/marrow. From wherever it was where this took place the blood is then rushed to Phoenix Children's Hospital.( On Facebook there is a picture of the "gift" we were given). The bag was 5x that size. Once it arrived at PCH several things needed to be done so it can be "suited" for James' body. It was brought to James' room, several checks were done and 9:36 the first drip dropped. It's now 11:36...last drop...let's see what the future holds. Believe---- Dan Sam and James

Transplant day!!!

2011-06-03T05:16:18Z

Well the big day is here. It is crazy to think this is really going to happen. It is Day 0 transplant day. We wanted to let you all know how the transplant will work. The donors marrow came in tonight and then around 9 Arizona time (11am Chicago)they will begin his transplant. It will take place in his room and it will go through his broviac line in his chest. It will take between 1-3 hours to go in. There will be doctors and nurses in his room ALL day long to keep a close eye on his vitals. There are reactions so they need to be in here if James starts to get one, difficulty breathing, rise or drop in blood pressure, fever, hives etc. At night he will begin to get nutrients through an IV because his caloric intake isn't where it should be. The last few days his appetite his diminished. The next 10-14 days are critical because he is at such a high risk for infection. They will be watching him very close and testing his blood constantly. We are praying he does not come down with an infection. We feel very positive about this journey and are thankful we have so many people joining us on it. We can feel the strength, power and love you all are sending. Please keep praying for our little Superman....We will try and update tomorrow to let you all know how things are going. I know it's hard not knowing so we will do our best. BELIEVE Dan, Sam, and James

Last day of chemo!!!

2011-05-31T19:19:55Z

So James just finished his last dose of chemo. It was a different one today so they gave him a med that made him higher than a kite. He seems to be doing well. Tomorrow and Thursday are his rest days and Friday is transplant day. We have been keeping busy by doing crafts. James made a red white and blue wreath in honor of memorial day. He also painted a piggy bank that looks super cute. Shower time has been difficult because he can't get his chest wet and the tape they give us to cover his port falls off the second we walk in the shower. The talk of the second floor has been James' weiner story. When I had to go home Dan stayed with James and while Dan was changing him James kept saying Big Weiner!!! James does this thing where he will continue to say something until you say it back to him so he knows you understand him. So imagine the nurse standing in the room listening to a 2 year old talk about how big his weiner is. Never a dull moment with James around. We thank you all for your prayers and support. These next two weeks are when James is at risk for infection. His numbers are so low which they should be but we just need to take special care and need more prayers than ever to prevent anything from happening. Please continue to leave us notes....they are so uplifting. we will try to update the site with current pics. Almost daily there are pics on Facebook. Believe.......Dan Sam & James

Day 2 down 4 more chemo days

2011-05-28T03:43:56Z

We wanted to let everyone know that James' day 1 went great. He played all day didn't get any side effects from chemo and he tolerated his mouth care that he gets 4 times a day. We couldn't imagine having a child that put up a fight. The docs said it will take a few days for him to start feeling crumby. Today he did great!!! Had great energy throughout the day his appetite began to fade a little. The nurse said that he eats like a 16 year old boy. We wanted to say thank you to you all for following James journey. Your prayers and the notes you leave us are so nice to read throughout the day. Believe me it gets lonely so I check a lot. We read them to James so he knows how many people are rooting for him. Today is considered day -7. We have negative numbers on the days that lead up to transplant and the the miracle day in 0. So if we ever blog about negative numbers you all will know what we are talking about. We will blog either tomorrow or Sunday to let you all know how James is doing. Once again thank you for your love and support. Keep sending the prayers for an infection and complication free transplant his way. BELIEVE!!!!!!!! Dan, Sam, and James

It's go time!!

2011-05-25T00:34:16Z

Welcome back everyone. We wanted to start blogging so everyone knows what is going on with James John. We know it's been a while but no news is good news. We are checking back into Phoenix Children's Hospital tomorrow. This will be our transplant admission for 8 weeks. Thursday he will start chemo for 6 days and then he will have two days of rest and the his transplant will be in June 3rd. We know this is not an easy journey but we also know how strong James is. We believe he will prove that once again. We will try and blog as much as we can to let you all know how things are going. We ask that you pray for an infection and complication free transplant. We are all witnesses of how the power of prayer works so lets keep it going. We thank you all for all the kind words, they are what helps us get through the hard times. BELIEVE!! Dan, Sam, and James

Very Thankful!!!!!!

2010-11-24T04:42:00Z

A year from Nov. 20th we found out James had CGD. With James' strength, our family's love, and our friends belief we have made the fight towards his cure very powerful. This past year has been the hardest years of our lives. We have learned so much from James. He has taught us to never give up, believe in the power of prayer, and to look forward to the future more than we ever had. We want to thank everyone for their continuous thoughts ad prayers through this tough battle.

The great news we wanted to share with you all is that James had his CT last week. The scan came back showing NO infection. Today James was taken off of ALL IV meds and was put on oral meds just as a preventive. They want to leave his line in and continue to monitor his labs. Once they see there is no change they will remove the line out of his leg. This is a very exciting time for us, but also very nerve racking. We of course worry about him getting sick now that he is not on a treatment dose. We put our trust in our doctors. We know that they have James' best interest in mind. One thing they did find was two large air pockets in his lung. These most likely came from where the old infection used to be. They are large enough to cause concern so we are having a sit down meeting on Friday to see what the lung specialist and our doctors discussed.

We couldn't have asked for better news before Thanksgiving. James has once again shown how strong and amazing he is. This is another step we needed to take to get us closer to transplant.

We hope you all have an amazing Thanksgiving and be thankful for all that you have. We have never been more thankful in our lives, not only for James but for all of our friends and family.

BELIEVE!!!!!!!!
Dan, Sam, and James

Moving on

2010-09-10T03:16:00Z

Happy September Everyone!!! Sorry it has taken us a while to blog but we’ve been non stop since getting back from Chicago. We forgot to announce at the benefit that we bought a house in July. It’s taken quite a bit of time getting it James proofed. (Cleaned and painted) but it is finally done. It is much bigger than our townhouse was, so James has a ton of room to run around. We can see a huge difference in his attitude and walking/running ability. His favorite part of the house is the garage. He loves going out there and hanging with daddy. Sits on the Harley and rides his own quad.

Last week James was fitted for his hearing aid molds so he should be wearing them in about 3 weeks. It’s really something with all the doctor’s appointments James has how well behaved he is. He lets whoever do whatever kind of test they need to do. Never cries or whines about it. Today he had an x-ray and the girl ahead of us was screaming and crying and James just looked at us like what’s her deal. Then he got in the room laid down and talked about garage stuff with daddy and was done in less than 5 mins. We are just so thankful he is so easygoing and relaxed. It makes it so much easier for everyone.

This Tuesday we took him up North to Lynx Lake. We wanted to go somewhere he could go outside and get some clean fresh air. His doctor has been pushing us to get him outdoors. The temp was about 25 degrees cooler so he was comfortable. It was so nice for us to see James having so much fun hiking, looking at the ducks and having a picnic. He hasn’t been outside in so long so he was taking it all in. We took some great pics that we will put up on the site soon.

Again thank you all so much for attending the benefit. The amount of people that came was completely overwhelming. We wanted to send a special thanks to the Evans sisters for their love and dedication to the BELIEVE cause. It was great seeing our families and so many old friends. Thank you will never be enough to say. You all are in our hearts forever.

BELIEVE!!!!!

Dan, Sam, and James

CT results!!!

2010-06-18T04:44:00Z

James had a great check up this week. The CT showed improvement in a couple of areas. His right lung looked a little better so they are going to do another burst of steroids to see if they can open it up a little more. The abscesses that are filled with air looked a little smaller. His ribs are completely healed with no destruction done to them. His ribs were infected from back when he had the three chest tubes in. The doctors are still unable to give a date for transplant because there is still too much infection. They were able to take him off another blood pressure med so he is only on one now. The three IV meds. remain the same. We just wanted to keep all of you updated so you know how our little man is doing. James has this new walk he does but he only does it around doctors...he holds his hands behind his back and paces around. He looks like he is in deep thought and then he will take a look at their paperwork with a serious face. It is the funniest thing!!!!!

He is loving all the Toy Story stuff right now. Every time he sees Woody he says "mam". His energy level is HIGH!! Plays all day and just cracks me up.

We were very excited to hear all of the good news!!! Thank you for all of your prayers!!!!

BELIEVE!!!
Dan, Sam, and James

June 11, 2010

2010-06-11T20:12:00Z

James has been doing great at home!!!! We have taken him outside for a walk and out with Chopper a few times. Now that its been in the 100's we haven't been going out because he is a little sweat hog. He loved watching all the Blackhawks games and wearing Dan's jerseys. Dan's parents were out here a couple of weeks ago so it was great for James to be able to spend time with them. The last time Karen saw James he was still in the ICU...what a difference from then to now. James is starting to talk a lot more. Repeating EVERYTHING we say. It's exciting to see how smart he is. We have a big doctors appointment on Tuesday. He has a CT scan so that will let us know how his right lung is looking. We are hoping to see more improvement. He sounds and looks great so we are very hopeful. This weekend we are going bowling for James. Kendal a friend of mine put together a bowling fundraiser for James. I'm excited to get out of the house and kick Dan's butt in bowling. =) There are so many people working hard for the August 8th benefit in which Dan and I are completely blown away. Thank you all so much for all that you are doing for our family. It means the world to us. Thanks Matt and Leanne for the amazing new slideshow and making the tickets available for people to get right on James's site. We will let you all know what we hear later this week.

BELIEVE!!!
Dan, Sam and James