Moving on!

Hello all, I am going to start writing all his updates on his own Zack Attack Facebook page. I believe you will still be able to read everything even if you don't have a facebook (You should get one...its amazing) Please go like his page and follow him. https://www.facebook.com/Zackattacksoares

Arthritis Walk and health update

We are so excited about the walk on May 4th! Zack was selected to be the honoree for the upcoming Arthritis walk by the amazing people from Camp Milagros. He is pretty excited about this and we have even gotten his school involved. We are doing a school wide fundraiser for Team Zack Attack and are hoping to get a butt load of donations. If you would like to be part of our team we would love to have you. If you cant make it out to the walk and would like to donate please follow the link below for both options. http://tvarthritiswalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1050432&lis=1&kntae1050432=5FEE9D03897F4E45A88384D1E0C85A68&team=5359062 We were in Chicago last July and Zack was looking really great. Dr. Pachman decided to start the decrease on Meds and we were hoping to be off by this summer. Zack and I went back in January for our follow up and were surprised to hear he was having a flare up. It completely crushed me! Thankfully we did not have to start new meds but just increased them. We just saw her again last week and are awaiting the test results. It's hard to have set backs but I really try and remember that other children are suffering with more difficult diseases and some lose their battle. I hope this is our worst ever. Zack is doing well overall, with a flare up comes all his emotional stuff as well. This is the hardest part for me, he wants things done at his pace and his time (it's a control thing) and if I am short with him or if he gets yelled at he loses control of his emotions. He cries over everything and he really tries to control that but sometimes he cant. He has really tight muscles and has stretches to work on to make him loose. He is still on every 4 weeks of infusion and takes multiple medicines a day. Keep Zack in your thoughts! If you are an old nurse that cared for Zack please email me. I would love to talk to you. Chefyshell@yahoo.com

Man I suck at this!

Damn Facebook has ruined my blogging ability. I have shared everything about Zack on there so I am not good at keeping up with this. I feel bad, I get you hooked and I ditch you. So I will recap and PROMISE to add more on here. SO since last August we have seen Dr P 3 times. Things were looking up at the beginning of the year, talks of meds coming down, looking for some great things and it was a big jinx. Our last visit the end of July was a different path. Zack has been having some bad leg pains and I swore it was a flare. WELL, evidently I am not a DR and Dr P thinks that it may be something completely different. We are sending all Dr files to her so she can go through it all. While in Chicago they did MRI, DXA, LOTS of blood work, PT, & saw ortho Dr. Zack needs to start PT again so that means more trips to Stanford. We really need to figure this out, he deserves to be off meds. This has been a long road and so much more to cover. Zack has been doing good though and is still playing Soccer and Baseball (not at the same time) and has done well in both. He did pretty well in school and is not missing it at all. He really enjoyed his class this year and is looking forward to being an older kid on the playground. That's what its all about, right? As you remember we were raising a guide dog Patsy. Well, she was recalled in April and has been up at her formal training. That was pretty hard on Zack to let her go. They were buddies and he really misses her. Zack has a great personality and is our little comedian. He is still pretty reserved around people and I call him a closet joker. Just wait till he becomes more comfy around people, he's going to be class clown. Please leave me a message if you still read these and don't see anything on Facebook. I am interested who reads this. Thanks for reading and I will update more as things happen. Michelle

Playing catch up

So much has gone on since January and my last post. Zack is doing good and we saw Dr Pachman twice since our last visit. She is pleased with the way he looks and is feeling. We have gone down on his prednisone to only once a day. I can't wait for him to be off of meds. He has had multiple tests done and all have come out clean. Whew! He still continues to do his infusions every 4 weeks and those are helping out like a gem. We are going to continue them until they stop working.

We decided early this year to become a puppy raiser for the Guide Dog for the Blind organization. We got our puppy in March and we have fallen in love with her. She is a black lab puppy and her name is Patsy and is 7 mo old. This is what the picture is of. This has been an experience like I never thought it would be. I'm not sure how she will be as a guide dog but I really feel she could be a therapy dog as she is so comforting to Zack when he is sick or doing infusions. We have her another year and yes it will break our hearts to give her back. It's for the greater good and we are helping someone else, that is what we keep reminding ourselves.

Zack went to camp this year for 5 days and had an amazing time! He went to a camp sponsored by the Arthritis Foundation called Camp Milagros. He did somethings he has never done and had an experience he will never forget. He cant wait for next year. When I get the photos I will post them on here.

We did little traveling this year but we did go visit my sister in Texas and on his first day there learned to swim and now swims as if he was born swimming. He has taken swim lessons since he was 3 and cried every year and hated it. He spent the summer swimming with his cousin Anthony. He had a blast. It is so comforting that I can let him swim and not worry about his safety. It is a huge accomplishment for him.

Zack started 4th grade today....I still can not believe he is 9. It was just yesterday I was helping him walk. He had a great day and so far enjoys his teacher...no homework yet. Ha Ha Ha. It's a big year, he plays on the big kid side of the playground now. He gets to hang out with 6th graders (does he even know 6th graders?)now and that's pretty cool!

He continues to thrive and make big steps in life, We are so proud of him and he is the funniest kid and makes us all laugh non-stop.

It's been awhile

I can't believe how long and far in between I have updated this. I really need to be better at this but it's been put on the back burner since I post everything on facebook. I will try and do better posting and keeping his blog up to date.

Zack is doing well and is stable. As always we strive to get him in remission but it seems to be harder and harder as time goes on. We travel to Chicago every 3-5 months to see Dr. Pachman and have her evaluate his progress. She is such an amazing woman and I wish I could see her more often. I think she does amazing things for these children with Dermatomyositis. We actually travel next week to see her again. This visit we will also be seeing a GI Dr. I am hoping they can rule out some things they are concerned about. Zack just had a gastric emptying test and that came back negative. I like that word "negative"! They were testing to see if any issues with digesting and wanted to see how long it took for food to pass. He did great during this hour long test laying completely still. I will post while in Chicago for any updates we get there.

Zacky started doing home infusions back in Sept and he gets them every 4 weeks. He is doing good and the past 2 have had no side effects. As a matter of fact he went to a sleepover the next day to a friends house and did great. We really like his nurse and hope we continue to get the same one. We are not sure how long he will be getting the infusions but I am hoping to get an idea while in Chicago.

Zack has started Baseball and already loves his team. This season he is a River Bandit, Zack has been a Lugnut for 2 years now but his coach couldn't move up. Zack's new coach is Coach Mike. He's a really great guy and looking forward to playing with him again. He also played competitive soccer this past fall and learned a lot. He loves soccer just like his sister. Bring on Baseball, I am ready for it!

Well, as things come up I will update his blog....I promise!

Chicago visit #4

I want to start this by saying we have absolutely made the right decision by coming here to Chicago to see Dr. Pachman starting last august. She has done tremendous things for our Zack!

Today we saw all the Dr's that come to our visit here at Children's Memorial. Zack's PT score went up by 2 points which is great. There are still issues with his hamstrings and his neck which have always been an issue for him. She is very please with his skin and she said we will continue to do IVIG until he is a lot better or he has a flare. I have pictures from his appointment but I will have to upload them from home. We are scheduled to come back in March and at that visit we will also see a GI dr. She thinks that there is still something there that is causing him some issues. He still defiantly still has disease activity in his systems but she said it is looking better. She take magnified pictures of his nail folds and that is where you really can see the redness. At his appointment he had 14 vials of blood taken and when we get that back if the numbers are good we will start to decrease his Prednislone. That makes me very happy considering he has been on it for over 3 years and it's not great for his body. Overall this has been the best appointment yet so far in the past 3 years and 8 mo. I hope we can stay on this path.

We go home tomorrow and on Thursday we have an appointment with the ENT to talk about the lump on his neck. At that time we will decide when to do the biopsy and rule out the bad stuff.

Thanks to you all for your continued support. It means the world to me!

Chicago visit #3

Today was our visit with Dr Pachman. Our appointment lasted 4 hours today. She was not happy with his progress and is changing quite a bit of things that we do for his treatments. She said she has patients that were worse than him a year ago that are further in treatment and is doing better than him today.

She is increasing all him meds and starting him on Zurtex because she has found that there is an allergic reaction in his skin rash that she feels can be controlled with allergy meds. She says that this skin rash can possibly cause heart disease in the future. She also says that she thinks that he would benefit from seeing a Psychologist. Her reasoning for that is kids with an illness tend to feel like they cant control their illness so they start to obsess over other things. I can see that in Zack and I have asked our Stanford Dr's if it's possible that kids start to get OCD because I feel Zack has that a little. So I will look into that when we get home.

He is in the 4% of height and weight and wants to get a better idea of this through a dietitian. I showed her the nutritionist report from a few years ago and she said we should explore that again. I will try what ever she thinks will work. We're back to milkshakes and ice cream whenever he wants it. His weight and height need to improve. She also did a body fat test on him to compare it all.

The Physical Therapist showed me how his muscle in his right leg is a lot more pronounced than his left. His hamstrings are also really tight in both legs. His left side is still quite a bit weaker and not sure why it's so different than his right. We got some exercises that we should do at home. We are doing a follow up on his bone density with a scan at 9am tomorrow morning.

When we get home we will start again IVIG treatments with one every 3 weeks. Last month we did a 3 day pulse of steroids but there was no follow up with it. SO we will be doing another 3 day pulse and a 1 a week infusion for 8 weeks. We're hoping this will help him and put him over this hump we are stuck on.

I feel so much better talking to Dr. P about all this stuff going on. She tells me everything I need to know. She really wishes that we could return in 3 months but were not sure if that is possible.

We are staying at the Ronald McDonald house again and have met some really great people. I sit here and think about everything that he has been through and everything that we still have ahead of us. He is such a strong boy and cant imagine going through it myself.


As I am sitting here this mom comes in and we start talking and her daughter has Cancer and she found out today that its has metastasized into her lymph's. It is a very aggressive Cancer and not sure the out come. I always say that things can be worse and this proves it. This is my worse and hope this is the worse we go through.

This has been an emotional Day!

New meds once again

Zack has had some test in the past few weeks trying to get some answers on things that are happening with him. Lots of blood work, X-ray on his hands, and we saw a GI DR. All his Dr's have talked, including Dr. Pachman from Chicago and have agreed on the next treatment.

His Bone age scan (x-ray) came back reporting that he is the size of a 4 yr old. That's a good thing since he is so small. They were worried that his bone age would be his normal age or higher, that would be a problem. Zack has a lymph node on his neck that has been swollen for some time now, they have decided that they think it would be best to biopsy the lump to rule out anything bad. When we talked on Monday she said we should watch it and make sure it doesn't change. After talking and expressing my concerns we agreed at his next visit (4 wks) we would test it. I don't want to wait and see if it gets bigger, I want the possibility of a tumor OFF the table. The DR's mentioned it and now that's all I think of. I want it out of my mind.

Were starting a new medicine called Cyclosporine and continuing his Cellcept and Prednislone. WE are happy to report that he has been taken off the Methotrexate. That means no more shots from Mommy. I am so happy about that!

Zack also just finished a 3 day infusion and for the most part it went well. Today was the last day and he really had a tough time with it today. He started out on Monday feeling great and than got an upset tummy but recovered real quick. He wasn't happy that he had to keep the IV in until after today's infusion. Tuesday was a breeze and flew through it. Today on the other hand was bad from the beginning. He developed a fever of 101.4 and was very clammy and irritable the whole time. He was like another kid. He was yelling at the nurse telling her to take it off and stop taking his blood pressure. He was so uncomfortable he just didn't know what to do with himself. I felt bad for him especially since he NEVER acts like that, I knew he was in pain because he had to keep the IV in I think he was just done with the whole thing. He was not happy that he couldn't play 2 square at school and couldn't rough house with his buddies. After his infusion he was an emotional mess and so we had to wait to make sure he calmed down and his arm stopped bleeding. He is pretty drained from all this stuff and is in bed without a word tonight.

So we start the new medicine as soon as they mail it to me and hope this one helps. That's all I have for now. Keep him in your thoughts.

Thanks

Dr. appointment update 3/17

Zack went to his Stanford Dr today and had a check-up. His blood work wasn't terrible but after his physical and a look over Dr.Lee said things we rent very good. This is the first time she had him leave the room to talk to me. It's very hard for me to believe but she says his muscles are a lot weaker than just the last visit 4 weeks ago. I don't get it and it's SO frustrating. He has been in Karate and is now doing baseball but he's loosing muscle, I just don't understand. His rash is also unstable which means it looks different every time she sees him and is still pretty blotchy. She found some calcinosis on his elbows. Dr. Lee said she is calling Dr. Pachman tomorrow and they are both going to try and figure this out. Dr. Lee is also sending us to a GI doctor to see if there is something else happening and try and figure out why he's not gaining weight or eating. She is going to consult a nutritionist again and she what they think. She is thinking that we are going to start the infusions again, those brought all kinds of issues but we feel like they did help. Because of his muscle weakness she is sending him back to PT. An hour after leaving his regular Dr emailed to follow up and wants to do a full physical on him. I really do love that all his Dr's are connected. Dr. Lee said she will call me by the end of the week and let me know what is going to happen. I feel so deflated, I really was not expecting this when we went to the Dr today. More to come when I hear more. Keep good thoughts for him.

MAKE A WISH

Back in August our Dr told us he was going to refer Zack to the Make A Wish foundation. My first response was "um is there something your not telling me?" Personally I have always thought it was for children that were terminal, I was nervous even after he explained to us that it is a misconception. After a lot of research I was convinced that I was wrong and as a matter of fact there was a story about a girl that has the same disease as Zack. After interviews and discussions and much much more his wish was granted and the wheels started turning. His original wish was the Disney cruise but because he is under 10 you are not allowed to travel international so they went to his second choice which was Disney World. After all the foot work by the amazing people at MAW we were sent to Florida. We were there for 7 days and stayed at an amazing place called Give Kids the World Village. http://www.gktw.com/ That place alone is a vacation. We went to Universal studios for 2 days and the Disney parks for 3 days. It was such an amazing trip! The kids had ice cream for breakfast 2 days and really miss that since coming home. Thank You MAW!! I could write a book about our trip.

Chicago 2010

We Dr. Pachman today and she is really encouraging me to stay and see another specialist on Wednesday but changing my airfare is way expensive. She wants him to see a GI Dr. She thinks that JDM is effecting other things now and wants to have some test run. She thinks his non eating is from this new medicine which means a med change may be in our near future. God only know whats next for him. We did blood work first which was good cause we got some results but she wanted more done which we'll do at home. She agrees his skin looks worse than last time and for the first time ever it's in his eye lids. Total bummer, she says he still has a mild case but very chronic, I don't like that! Remission will not happen again this year, she thinks more like 5 years at this point. He had a lot of blood work done and handled it very well. We will find out more results in 2 weeks when she calls us. We are at the Ronald McDonald House again and this place is really great. The things they do for families is really amazing! I will post another update when we hear back from Dr P.

Happy New Year

Hope everyone had a great Christmas or whatever holiday you celebrate. We had a holiday and spent it with our families, near and far. I hope everyone was able to spend it with family.

We had an appointment at Stanford yesterday and we are going to increase his medicine because he has been red and blotchy. He also has swollen lymphnoids (spelling?)that were going to have an ultrasound done to see whats happening there. D. Lee does strength test during his visits and his hips are weaker and left leg again. His blood work didn't look bad but it is fluctuating. We also see Dr. Pachman on the 1st of February in Chicago and are interested in what her take is on all this. We hoping that soon he will be in remission and not take any of these meds any more.

People always say to me "but he looks so good" and he does but it's all internal. We wouldn't have found out that he has this Disease if it wasn't for his rash. He was acting fine and never complained about anything hurting, itching, any soreness nothing. We only were seen by Stanford in the Dermatology department because of the rash on his face. We were blown away when we heard "muscle disease". We did notice that his energy level was down but he never complained and still doesn't. Research shows that kids with JDM with no rash have gone years without being diagnosed because the side effects are leg pains, aches, or weakness which have been passed off as growing pains. We were very lucky to have the rash involved.

Increasing his meds means side effects are going to be more of an issue but we will take it as it comes. I'm going to try and update at least once a month, I know sometimes we go months but I have not had any reports but I will try and update more. Thanks for reading, I know some of you have read this on Facebook already but were worth it right?

Tis the season

Well, not much has changed with Zack. He is still stable which is good but we strive for better. We see our Dr after the new year and hope we get some more ideas. We hear such great things about these drugs he starts but we have not had great results with them. He's doing good physically and we are always impressed by his strength, mentally and physically. He works extra hard at things just to prove he can do it. Zack started Karate with his buddy Ryan and they are doing great. He really loves karate and I cant believe we didn't get his in earlier. Zack is looking forward to Christmas like you would not believe. After the new year we will also be traveling back to Chicago to visit Dr Pachman. We really liked her and look forward to see what she has to say. I will try and do more updates on him, I've been behind.

New meds

We started a new medicine on Zack this week. Cellecept is the new perscription Dr. Pachman suggested and Stanford Dr's agreed and so we started. So far so good. We are really hoping this does it for him. He is such a great kid and is so resiliant. He has had some ups and downs these past few weeks but overall is doing good.

Zack has been referred to The Make-a-Wish foundation by his Dr. There is a process for this to be approved and I think it's looking pretty good. I hope! We have not talked about it much because we didnt know what the process was and how long it takes. I hope it works out, Zack has been through a lot and I think this will make him really happy. We are bowling in a fundraiser on the 10th for Make-a-Wish foundation and are looking forward to it.

The Dr gave us an option for another treatment if this doesnt work. It's an infusion we do here at home. It's a port that I insert and it takes about an hour and half to inject. this make me a little nervous but we will do what we need to make him better. Lets hope this Cellecept works

Chicago results

I took notes during the call this evening so this may seem random, try to follow along. If you have questions or know what some of this means please share cause some I don't know.

Zack did a test that the physical therapist gave called the CMAST, it measures the movements rotation and strength in his body. Out of 52 he got a 47, not bad but she said that at this stage in his treatment he should be at 52. This improves with PT which means more trips to Stanford. His hamstrings are VERY tight and had a hard time standing on his heels which also needs to be treated. While taking his physical exam his right hip popped and was tension in one of the movements (external rotation) so she did an x-ray, that came back negative which means there was no spurs or anything restricting the movement and it's all inflammation which is part of his disease. His bone density came back at the lowest part of the normal spectrum which is not bad but needs improvement. so he will be taking supplements for that.

All this next stuff was from the blood work an asterisk means no clue what it is and I am going to google it.

Adolase is disease activity and that his high 9.3 and normal is 7.0 so that is a concern-I just looked and it's even higher than our July visit

Cholesterol, LDL, triglycerides(??) are all normal

Zack is O+, never knew that!

I had a blood-clot in 92 (it almost killed me, OK not that dramatic but it was bad) in my subclavical vein and with that she was concerned on some of his possible levels. She did some test and they all came back negative, they were testing in the lupus family.

*CD4- was 15. and normal is 16-42, not bad but needs to talk to Stanford

*AMA was positive

Platelets have come down but she is going to still watch those\

His nail beds (picture I took) has lots of disease activity so she wants him to start a new medicine.

She would like to see him back in 6 months if we want to see her again.

There are a few more blood test that she sent off to a more extensive test but don't know the results for a few more weeks.

I'm really happy with the results and nothing new coming up. If I find out more I will update this.

Thanks for all your well wishes, you guys are the best.

Chicago Update

We saw Dr. Pachman on Monday and what a nice Dr she is. Zack had a bone density scan at 9 than we ate real quick at an amazing Bagel shop called Einsteins Bagel. So yummy! We got to the hospital and checked in. He saw a nurse got all the info she needed and than Physical Therapy came. The did a cmast test on him and they basically rate his strength by doing certain things with him. He scored a little lower than he did in April but not really a big deal. After that one of the Dr.s research girls came in to talk to us about a study and and to take photos of his cuticles/nail beds. This is to see the capillaries in his fingers and shows the disease activity that is going on. We signed him up for this study that they are doing, I feel like if know one does these studies than how will they get any results. Right? After that Dr. P came in, she brought in his medical records and man I did not realize how many he had till I had them ALL sent over. At first I just sent his Stanford records than I was thinking , well it all started with his pediatrician so I should send those than I thought maybe I should do the hospitals, he was in the hospital for this why not send those. I cant tell you how thick they all were. She had them and flagged all the stuff she thought was important. She was asking us questions about things we didn't even realized happened. She asked why he needed oxygen when he was born and Morgan said "he didn't." LOL I said "babe how can you forget that? They took him right away and but him in the incubator." He lifted his eyebrows and said "um yea no idea." Dads, geez! I was so impressed that she remembered all that in his file. I asked about his platelets being so high and she knew the numbers right off the top of her head. So after she did everything she thought of she told us that she was going to go back and review everything and get back to us on the 31st. I was disappointed that we would not have her thought right away but after we talked about it realized it makes sense, she needs to go over it all and compare things and get blood work results and so on. OK OK I'm an instant gratification kind of person. Before he was done for the day he needed to have an X-ray and blood work taken, they took 15 vials of blood. Poor kid was drained afterwards. So that's basically it. We need to wait till the 31st to here what she thinks. It's going to kill me!

BTW-did I mention we got into the Ronald McDonald house? We did and we literally found out that morning. The office opened at 9 and that was 7 our time. Our plane was to leave at 7:25 so I was calling like a mad woman. Finally at 7:15 he picked up and told us we got a room. At first we were a little out of place but REALLY quick found myself fitting in. Morgan is more reserved so he has a harder time but Zack feels right at home. This place is amazing! I swear they really cater to you, we don't need to worry about anything. There is food if we need it and they cook a meal every night for the residence. I am so passionate about this foundation now Morgan is going to go crazy. All the families they help during hard times is just amazing. SO, when you go to McDonald's just dropping your change in the donation bin is helping these houses survive. All that money goes directly to these houses. Another thing the Chicago House does is saves can tabs. They raised $40,000 dollars last year just with these tabs. I will be collecting them and sending them here to Chicago. I hope that whenever we need to come see Dr P that we will be able to stay here again. It has been such a wonderful place for/to us. Not many kids are staying here at the house so the girls during the day just go nuts over Zack. All of them keep taking him to the toy closet(although its more like a room) but we keep telling them "he has already gone 3 times" (your only supposed to go once) we have now had to put a stop to it cause we have no more room in the suitcase. They are just to generous here. Don't think he isn't eating up all the attention from them cause he is. OK so now you have two tasks, 1.donate your change at MacDonald's and 2. pull your tabs and give them to me. :)

Today we had a free day so we took a Double Decker bus tour around the city. We had a blast. We went to the top of the Sears tower and went on the glass rooms they just put up. It was so cool. We have picture to come soon. Tomorrow he needs to go back and have more blood work done because they can only take so much from his body at a time.

I know most of you have a facebook and have read most of this already.
Thanks for your support!

Countdown

We had Zack's 6 week check-up today. Good news and not so good news. This post is going to be kinda random, I got a ton of info and I'll try and think of everything.

We have been trying to get his Prograff levels up between 4.5-5.5, it's been a challenge and I think we are there. His level was 4.2 today and it was 1.5 last time. This was the first time since we started this medicine that we have not had to increase it. We are not sure if it's going to do it's job since he still has his rash. His cuticles still have capillaries (spelling) which shows disease activity.

I really do not like hearing he is going to have a chronic case of this, he will possibly have this for a very long time. Zackary has gone through all the "protocol" treatments that they have and he is just stuck. He is absolutely not getting worse but he is not getting better. You may think if he is doing good why not just leave it? Well, my answer to that is he is on some pretty high medicines he is on Steroids and a immune suppressor among 6 others. He cant be on those forever or however long it will take for him to have another "flare-up". What will these medicines do to him in the long run? I do not want him to be on meds the rest of his life if we can do something now and try to make him better. So we are going to do everything we can to make him better and not have to worry about where he is going and if he's going to get sick. I would regret if something happens in the future because he has been on these meds for so long when we could do something now.

We are looking to Dr. Pachman for some answers when we see her in Chicago. Dr. Chira explained a little how the appointment is going to go. He will be seeing a whole slue of Dr's while there. They will be taking the max amount of blood possible out of him for some serious testing. It will be an all day appointment. He will see Ot and PT and have someone else come to look under the scope of his fingers. We are really looking forward to this appointment. We will be leaving on the 16th for Chicago.

Last thing, his Platelets are still high, 3 visits now, and it could possibly be inflammation from the disease. I say why not find out why they are high. Another question I have for Dr. P.

I think that's it for now, if I think of anything else I will add it on.

Thanks for reading and keep him in your thoughts. He is such an amazing child!

Who are you calling Cupcake?

Today Zack had to go do his bloodwork, we made an agreement that when he has to go to the hospital his reward is that he gets to get a cupcake at Sprinkles. Have you ever heard of Sprinkles? A friend told me about it (thanks Scott) Google it and GO! They are amazing! The cupcakes are $3.50 each but worth every penny and it's worth the money considering what he goes through. Besides, his reward use to be a toy which was way more expensive. This is a picture of him trying to pick which one he wants, he picked Red Velvet one of my favs too.

Zack and Jackie

 

Here is a picture from Zack's birthday of him and his Jackie. He has not seen her since his birthday and he sure does miss her.

Better late than never

We had our appointment with Dr. Chira and Zack's levels are still to low. We have increased his medicine again, and his skin still is to pink for our liking. Zack has been classified as a chronic case of Dermatomyositis. Typically children are on medication for 2 years and tapered off after that. Zack was diagnosed 28 months ago and he is still struggling with all this. It looks as if we have a few more years of all this. Saying that we have decided to see Dr. Pachman. Dr. Pachman is THE world renowned Dr for the disease. It took some time but we have an appointment to see her. She is THE Dr for this disease. We wanted to talk to his Dr's before I posted it on here. His regular Dr is out on maternity leave and wanted to get in touch with her and get her feelings on this before we made any definite decisions. She is behind us on this decision and so we have moved forward. I have requested medical files and faxed over labs, we got a social worker and he put us on the waiting list for the Ronald McDonald house by the hospital. Bad thing is we don't find out till we get there if we got a room or not. We are really looking forward to this trip and to see what her take on him is. He will be undergoing a lot of different things while in Chicago. The nurse said they will give us more info after reading his file.

When you look at Zack he looks great and has a ton of energy, he crashes pretty hard though, he goes goes and goes and boom he's asleep. His skin will not clear up at all. The only thing that helped with that was the IVIG treatments and it was only helping his skin not muscle. Lets hope that going to Chicago will give us answers we so desperately need. We have our appointment on Aug 17th, he has a bone density scan at 9 then we see the Dr at 10 and will be there till 4 or 5pm. It's going to be a long day! More info to come when I find more out. This is good news

Happy Birthday Zack!

 

Today is Zack's Birthday 6/14/02 and we love him so much. He is 7 years old today and I cant believe how much he has gone through and over come. He is an inspiration to me and wonder what amazing things he will do when he's older. It's been 7 years since he completed me, I remember thinking "what on earth am I going to do with a boy?" Now I think "what would I do without him?" Think of him today and wish him luck.

Mommy Loves you
Happy Birthday Zack!

6/14/02 at 1:05 am.

(I typed up this post on the 13th thats why the date is off)

The latest

So Zack has been on Prograff now for almost 4 months. At his last appointment his levels were at 1.5 and they need to be at 4.5-5 for 3 months straight to see if it's helping. We have been increasing his meds to try and get to that point. We see the Dr again next Friday and hopefully they can tell us more. Our wonderful Dr.Lee has gone out to have a baby (so selfish of her I know) so we will be going back to see Dr. Chira also one of our favorite Dr's. Also at our last appointment they added another test to his blood work and it reads the level of his disease. The results are VERY low which means it is still very active. Remember at the beginning it was a 2 year treatment and he would be in remission? Well, now were looking at more like 5 or more. He has a chronic case and we cant get a hold onto things, discouraging I know. So after next Friday I will have more to add and another thing that we are doing for Zack's treatment but need to talk to the Dr's about it first and inform them. More to come...... Oh and I dont think Dr. Lee is selfish we love her to death and are very happy for her, her husband, and 2 kids. She's having a boy! Cant wait to see him.

Zack's Got Talent

Here is a video of zack and his 3 best buddies at their talent show last Friday night. They rocked the house!

Insurance!!!!! I hate them sometimes.

A week ago Friday I called in for another prescription of Zack's new medicine, on Saturday I got a call from the pharmacy saying that the insurance company has requested prior authorization for the medicine. Let me also say that he has had this medicine filled twice. All last week I was dealing with Blue Cross on this issue trying to find out why we needed a PRIOR authorization for something that we had been taking for 2 months. The Dr herself called, her assistant called, and I called numerous times trying to get an answer of why this was taking so long and why it was even happening. I was so mad on Friday when I found out that it was not being filled before the weekend as we had run out. They were telling me that they were not sure this medicine is medically necessary. Who are they to make that decision? It's not marijuana! Well, I just got a call from the pharmacy saying that Blue Cross is not paying the full amount so they can't make the medicine. They are paying them less than cost so they are loosing money on it. I spoke with the head person who I have been dealing with and she said they will make the medicine and deal with the insurance company later. I love Hallers, they really have been great through all this. The lady has called me everyday saying that it hasn't come through. I hope they can get it straightened out. At least he will be back on his medication.

This is all so frustrating.

Dr. appointment update

We saw Dr. Lee last Thursday and even though his blood test results still look good his rash on his face and hands are real noticeable again. We have decided to increase his new medicine (Prograf) up 2ml to try and get it all under control. We hope this will work, we go back for blood work in 2 weeks and see the Dr every 4 until we get it in better control. It seems like everything we have done helps one thing but not the other. Started the study and it helped muscle strength but not the skin so we did IVIG and that helped the skin than his muscles got weaker, started this new med and now his skin is being affected again. I'm not sure what to think, I wish they would find something that would help with both muscle and skin. I wish there was a cure for Cancer and Alzheimer's and Aids and Dermatomyositis. Maybe one day! Well, were going to keep our fingers crossed and our heads up and hope for the best. Things have to get better. Stay posted.

Leg pains

Zack has been having some severe leg pains the past 5 days or so. Started off just an annoying pain but now he is having hysterical crying pains. Kinda scary. His pediatrician thinks it may be cramps but I'm just not so sure. My gut thinks its more nerve than anything. It only happens when he is sitting on a chair or the toilet, not when he is running, playing sports, sitting on the floor, only when he is sitting on a hard chair. I got a call from school that he was in speech and all of a sudden started crying doubled over in the chair. He got up and it was done. Very strange. Could it be a side effect from meds? I don't know!

Baseball

Here are just a few of Zack's game today. They were very cute out there, Zack did a great job.

 

We start Baseball tomorrow. This is a picture from our practice game that we played last week. I hope that you notice the ball in the air, he hit the ball. He is so excited to be playing baseball again. He is on the same team as his 2 best buddies Ryan and Quinn. I will have pictures to show of the 3 musketeers tomorrow. He is so excited!

Dr. appointment update

We went to the Dr. on Monday and Dr. Lee has prescribed a new medicine that we will start this evening. His levels are not bad but not great either. We feel that we need to take the next step to get him better. We have looked into the new medicine and it sounds real scary but the Dr has explained to us that these side effects are uncommon and that she feels this is the best track that we need to go down. We trust the Dr's that care for Zack and we are confident that we are making the right choices for him.






What is the most important information I should know about tacrolimus?

Taking tacrolimus may increase your risk of developing certain types of cancer, especially skin cancer. The risk may be higher in people who are treated over long periods of time with drugs that weaken the immune system. Talk with your doctor about your individual risk.

****Avoid exposure to sunlight or artificial UV rays (sunlamps or tanning beds). Use a sunscreen (minimum SPF 15) and wear protective clothing if you must be out in the sun.

There are many other medicines that can interact with tacrolimus. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor. Keep a list with you of all the medicines you use and show this list to any doctor or other healthcare provider who treats you.

***Do not consume grapefruit or grapefruit juice during treatment with tacrolimus unless your doctor has told you do. Tacrolimus can have a dangerous interaction with grapefruit or grapefruit juice.

Tacrolimus can lower the blood cells that help your body fight infections. This can make it easier for you to bleed from an injury or get sick from being around others who are ill. To be sure your blood cells do not get too low, your blood will need to be tested on a regular basis. Your kidney or liver function may also need to be tested. Do not miss any scheduled appointments.


What is tacrolimus?

Tacrolimus lowers your body's immune system. The immune system helps your body fight infections.


Tacrolimus may also be used for other purposes not listed in this medication guide.

What should I discuss with my healthcare provider before taking tacrolimus?
Taking tacrolimus may increase your risk of developing certain types of cancer, especially skin cancer. The risk may be higher in people who are treated over long periods of time with drugs that weaken the immune system. Talk with your doctor about your individual risk.

Do not take tacrolimus if you are also using cyclosporine (Neoral, Sandimmune, Gengraf).

Before taking tacrolimus, tell your doctor if you have:

an allergy to castor oil;
kidney disease;
liver disease; or
high blood pressure.
If you have any of these conditions, you may need a dose adjustment or special tests to safely use this medication.

Some people receiving tacrolimus after a kidney transplant have developed diabetes. This effect has been seen most often in people who are Hispanic or African-American. Talk with your doctor about your individual risk of diabetes if you have concerns.

How should I take tacrolimus?
Take this medication exactly as it was prescribed for you. Do not take the medication in larger amounts, or take it for longer than recommended by your doctor.

The tacrolimus capsule is usually taken every 12 hours. Your doctor may occasionally change your dose to make sure you get the best results from this medication.

Tacrolimus can lower the blood cells that help your body fight infections. This can make it easier for you to bleed from an injury or get sick from being around others who are ill. To be sure your blood cells do not get too low, your blood will need to be tested on a regular basis. Your kidney or liver function may also need to be tested. Do not miss any scheduled appointments.

Store tacrolimus at room temperature away from moisture and heat.

What happens if I miss a dose?
Take the medication as soon as you remember. If it is almost time for the next dose, skip the missed dose and take the medicine at the next regularly scheduled time. Do not take extra medicine to make up the missed dose.

What happens if I overdose?
Seek emergency medical attention if you think you have used too much of this medicine. Symptoms of a tacrolimus overdose are unknown.

What should I avoid while taking tacrolimus?
Do not take tacrolimus if you are also using cyclosporine (Neoral, Sandimmune, Gengraf).

Avoid contact with people who have colds, the flu, or other contagious illnesses. Contact your doctor immediately if you develop signs of infection.
Do not consume grapefruit or grapefruit juice during treatment with tacrolimus unless your doctor has told you do. Tacrolimus can have a dangerous interaction with grapefruit or grapefruit juice.
Avoid exposure to sunlight or artificial UV rays (sunlamps or tanning beds). Tacrolimus may increase the risk of skin cancer. Use a sunscreen (minimum SPF 15) and wear protective clothing if you must be out in the sun.

Do not receive a "live" vaccine while you are being treated with tacrolimus. Vaccines may not work as well during your treatment with tacrolimus.

What are the possible side effects of tacrolimus?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Call your doctor at once if you have any of these serious side effects:

pain in the lower back or side;
urinating less than usual or not at all;
painful urination, blood in your urine;
problems with your vision, speech, or coordination;
tremor (shaking), headache, confusion, numbness or tingly feeling;
pale skin, easy bruising or bleeding, unusual weakness;
fever, chills, body aches, flu symptoms;
muscle weakness, tiredness, fast or pounding heartbeat, mild shortness of breath; or
increased urination, thirst, or hunger.
Less serious side effects may include:

swelling in your hands or feet;
nausea, vomiting, diarrhea, constipation, loss of appetite;
sleep problems (insomnia); or
itching skin or mild rash.

Update

It's been awhile, nothing really to update till now. Zack is having a set back right now and we are trying to wrap our heads around it. I picked him up on Wednesday and noticed that his face was a little red and blochy. I thought that maybe it was just because the sun was out and he was playing, the next day it was even worse and after a shower after school it did not get better at all. He also has been wetting his pants and very restless at night which I didnt put together until this morning when he woke up with sore legs. Well, that was my flashing red light that something was wrong. I emailed his Dr and she wants to see him on Monday so we went and did all his bloodwork today. I don't know what exactlly is going to be done as far as treatments go but things need to change. I will update again on Monday night. So sad that he is going through all this again.

Dr today

I'm stewing right now and stewed the whole way home from Stanford. I understand "why rock the boat if we don't have too" BUT I just want my son off meds and to be able to put this behind him. I trust whole heartily in DR.Lee and her choice in his medical decisions but I just want him to get over the hump he is stuck at. I know changing his meds are going to come with a whole new side effect but do we just keep him on the same thing and keep him at this level? How long is long enough? I'm frustrated, we go back in a month and see how things are. I guess I have to look at it like he is doing good and not having any problems but it is hard to not want him better. So Here it is....not much to report.

Hurry up and wait!

I did not update after the last appointment because we did not find much out. Dr lee thinks he looks good right now and does not want to change any meds right now. We go back right after Christmas to figure everything out. Right now it's a waiting game to see if he has any flare ups or skin problems that may come back. He suffers from headaches frequently but we don't know why. Ok that's all I got for now.
Michelle

Last infusion

We had our last infusion last night. i go back on Monday to meet with our Dr. to try and figure out whats next. He did good last night, he was a little crabby for a little bit but he just wanted to go home. I am not sure if it was just because of the last one but we got a lot less than we have in the past. He usually gets 3 bottles and he only recieved 1 yesterday, which means it did not take as long which was really nice. Im a little anxious to see whats next for him. Keep your fingers crossed that what ever is next that it will work this time.

Michelle and Morgan

Eye Dr.

We saw the Dr at Stanford today and good news, Zack's eye's are all cleared up. I knew they were better but with all the equipment they have they could really look into his eyes and see things I cant and woohoo it's an all clear. We dont have to go back until July. Thank god for good news. Now lets hope that we get more promising news next week at his last infusion. Keep your fingers crossed.

INFO

Zack had an infusion last week and we found out that December will be his last infusion. Dr feels that it has done all it's going to do for him. He is pretty weak in the neck and hips and he should be getting better with the infusions but is not anymore. We are happy with the results that we have gotten from the IVIG infusions but things have just leveled out. It's hard to hear when something is not working when we were really hoping that this was the one to put him in remission. They are thinking of changing all his medicines and starting all new, which I have to say is pretty scary. Not knowing what is going to happen and what he will go through again is freaking me out. Keep your fingers crossed for him.

Due to all the changes with him he is seeing Jackie more frequent again. We are seeing her once a week again for awhile. This is not terrible for him since he still LOVES his Jackie. If you have read his Jackie story you will understand. If not it is to the right. Good thoughts for Zack! More info when I get it......

Halloween

Here are pictures of Zack (and Rhianna)on Halloween. We had a great time last night and they looked so cute. I took me about 45 mins to do Zack's face.

Rim Study

We are officially done with the study. Here are a few pictures of the people who have helped us for the past 11 months. The first picture is of Elizabeth, Zack, and Dr. Lee. The next picture is of Barabra and Zack. She was his PT during the study visits. Elizabeth is the one who managed EVERYTHING that had to do with the study, she made sure that protocal was being met. Thanks to you 3 for helping him so much over the past year. You will always be part of our lives.

Moon Face

So I was going through our pictures and came across some of Zack with his "Moon Face". I do not remember him like this at all, it seems so long ago. This is when his rash was really bad too as noticed in a couple of pictures. He looks so different now it's amazing. He has come a long way.

Soccer

Zack is playing Soccer now and has a few friends that he has known for awhile on the team. He is having a blast with all his teammates and is playing so much better than last year. Here are pictures of him and his team.

Shark Boy

So Zack had a loose tooth and when I looked I noticed he has a double row of teeth. He has now lost one and it just looks so strange. How did I not see these? Aunt Jelly made this pillow for him for the tooth fairy, he loves it.

1st day of school

So I am a little late on this but better late than never. The kids started school 2 weeks ago and Zack loves the 1st grade. He has a male teacher and thinks he is so cool. here are some pictures of Morgan and the kids (I was at school setting stuff up) I cant believe he is a 1st grader.

View Album

Get your own

Insurance

So back before we started his infusions we were told by the insurance company that his infusions were covered. We found out 1 1/2 weeks ago that that is not the case. As of right now they have been denied. Insurance company says it is not medically necessary and an appeal needs to go to the medical board. Our wonderful Doctor followed up on this for us and we hope it has been cleared up. It still says denied but they told Stanford that it is covered. Keep your fingers crossed since just 1 infusion is $15,000. Yes that is right $15,000 and we have now done 3. We check everyday to see if it has been paid. Everything is on hold right now waiting to see what happens. He has gotten better with the infusions and we do not want to stop and have him go backwards. I will keep you posted.

3rd Infusion

Friday we went to Children's Hospital at Stanford and had Zacky's infusion. I have so many emotions about this. It makes me sad that having an I.V. every 4 weeks is normal to him. It does not even bother him now to get poked. WELL, they put a patch on his arm that numbs the skin and warms it so his veins are nice and big. I cant tell you how wonderful this patch is. His infusion went well, he sleeps through a lot of it so that makes it nice. They give him pre-meds for any reactions he may have and they make him sleepy. It takes a lot of time off of the famous line "can we go home yet? I'm bored!" He did well this time and we got to see our old Doctors. Dr Chira came by and so did Dr. Park. Both are the very first doctors we saw for Zack. Dr. Lee was in Legoland (Copy cat)! I'm kidding she planned it a long time ago.

Vacation

We went to L.A. last week for a short vacation. We went to Legoland on Monday and on Tuesday we went to Universal Studios. We had such a good time, Legoland is such a great place I cant even explain it. We could only spend a few days down there, Zack had his 3rd infusion on Friday so had to be home for that. Here is a slide show of our trip.

ZOO

We went to the zoo a few weeks back with one of Zack's real good friend. We went to the Oakland Zoo, it has been awhile and they have chaned it so much. It looks great. Growing up just 2 mins from the zoo and going A LOT I really enjoyed myself. Here are some zoo pictures.

IVIG 2

Well, I am happy to say I have nothing to report on this one. We had our 2nd IVIG infusion and it went very well. He had little effects from this one just a little headache but not bad. While he was there a therapy dog came by and that is what the pictures are of. Her name is Chloe and was very sweet. These are the only pictures I took because he slept a lot of the time. We go again in 4 weeks.

Zack starts Soccer in August and he is so excited to do it again, he hopes his friends are on his team. We will see!

Lego maniac

Zackary got a Lego set from him wonderful Dr. Lee at his infusion for his Birthday and he was anxious to get it done. It took him about 3 hours total and was so proud of himself for doing it. I had to tweak it a little but he did it all by himself. Here is his Indiana Jones Lego set

IVIG Infusion

We just got home and Zack is doing good. He really did not have any issues during the infusion (except being real crabby at times). He has complained since being home that he has a headache. He started the infusion about 1pm and was done about 7:30 ish I think.

His wonderful Dr gave him a Lego set for his b-day present today and he has been doing that since we got home because mean mom would not open it at the hospital. Can you imagine me searching for a ton of little Indiana Jones pieces on the floor. NOT HAPPENING.

So 1 down and many more to go. I hope they all go as well as today.
Thanks for all the support
Michelle & Morgan

Last weekend was Zack's birthday. Here is some pictures of him and his friends, ok ours too. He had a great time and this was the first year he went down the slide. His party was a break for him that he could just be with his firends. I cant believe he is 6 already. My baby is getting so big.

WooHoo

I found out today that
1. We are going to start the IVIG treatment on June 26th and
2. The insurance has approved the infusions.
I am so excited I cant stand it. So we are hoping that the infusions will last 5 hours BUT because of his weight it may be longer to infuse depending on how he is. Just wanted to update
Morgan and Michelle

5/27 Dr appointment

We saw Dr.Lee yesterday and she feels the best next thing to do is to start the IVIG treatment. I am looking forward to this medicine because it is NOT an immune suppressing medicine it actually will boost his immune system and hopefully he will start to gain weight. He is 32 pounds soaking wet, very skinny but oh so cute. We think he will start the treatments right after his birthday which is on the 14th of June. The IVIG infusions will be around 3-4 hours long and will do them at Stanford Children's Hospital. We have read some great stories about this medicine and we are looking forward to him getting better. We go back to the eye Dr this Friday because his right eye is getting worse. We will let you know more. Thanks for reading
Michelle & Morgan

Zack's Eyes

So here is a picture of the thing in his eye. The other eye looks different, it has more of a peek then a mass. This eye actually has a flap, it's kinda gross when you pull his eye lid down it sticks to the eye ball than flaps down. Nasty I know. We see our Dr tomorrow and will find out more about his treatments. More to come.....

No news is good news

I know I have had a few people ask what is happening with Zack. Well, he is doing pretty good. We go to Stanford next week and we will find out more about his treatments. We will find out if we are going to retreat or do the next step. I will update after next appointment. Thanks to everyone for caring and thinking of Zacky.

DR. update

Zack has had styes over the past few months and have been seeing our regular eye DR and things took a turn on Friday when we went back. He now has these peeks in his eyes and look really scary. Luckily he says they do not hurt. Our Dr had no idea what they were and called our Stanford Dr. and after talking made and appointment to see an eye Dr at Stanford. We saw the eye DR at 8 on Monday and she said it was ehagtsdkjdfhus (well that's how it sounded) basically he has irritated tissue in his eyes. The peeks that have formed are just the mad tissue he has in his eyes. We are putting steroid ointment and drops to help it go away. Poor guy went through hell at the eye Dr though. She had to dilate his eyes to check everything better and she flipped his eye lids inside out and put the ointment in. He was screaming! After all that we went over to the hospital for his regular check-up. He had blood taken and a physical and overall the Dr's think he looks good, which is amazing to hear. We are now going to try and decide what treatment we are doing next. Dr. Lee is going to talk to his other Dr's to see if the study medicine is what is causing all the side affects and his eye issues. If so, we may not retreat him with the Rituximab medicine and go to the next step which is another type of an infusion that he would get 1 a month for 12 months. I was really hoping for the 2 year mark and him being in remission but I am think now that that is not going to happen. As long as he gets better that's all Morgan and I want. Keep your fingers crossed for him. I have said this before, he is such a trooper.

Just for you Coach Ray!!!

These are pictures of the wonderful Coach Ray. I did not have any up of him so I wanted to make sure we had some of him up here. Not only is he Zack's coach but his son is Zack's buddy and they are all friends of our family. This is for you Ray!

BASEBALL!!!!!

Zacky had his first game at baseball on Saturday. He missed the first 2 but is back. It was so cute watching him out there. He had a blast playing and kept up great. He was sad he did not play catcher but played a great game. Hope you enjoy the pictures.

1 Year today!!!

Today is Zack's 1 year of being diagnosed with Dermatomyositis. What a year! Sometimes I sit and think and it only feels like a few months and than other times I think what has happened and I cant believe that he has gone through all he has in just a year. Today we got our 1000 hit on his blog. That really means alot to our family that our friends and family check back and see his progress. Thanks to everyone for thinking of him. Let hope this next year has great outcomes and REMISSION!!!

Nutritionist

We went to the Nutritionist yesterday, basically he is skinny as hell. On the chart he is in the 2% on weight and 18% on height. We are going to work hard on him to gain some weight. He needs as many calories as he can get in one day. Obviously I have no clue on nutrition so its going to be a learning experience for me. We see our Dr on Monday and I hope we get some good news. He was at the eye DR today and he has MORE styes in his eyes. Poor kid looks like he has peas under his eye lids. OK more later!

IM SOOOOO EXCITED!!!!

We got a call today that Zacky can go back to school. I'm so happy. I sure do love being with him but I HATE being stuck in the house. He has been in isolation for almost 2 weeks. The Dr says that his levels have gone up enough to get out of the house. All I have to say is thank god for my mom for helping me while Morgan has been in Arizona. I have been able to run errands while she sat with him at home. Keep our fingers crossed that he stays well.

Dr. Says...........

We had our follow-up with blood work and Dr. Lee says that his levels are still pretty low and he still needs to be in the house with no sick people interaction. He really looks fine, he looks healthy it's just that he cant be expossed to anything. So we go Monday morning early for more bloodwork. I am keeping my fingers crossed that they come up and he can go back to school. So until Monday thats all I have.

Home from the hospital

Zack came down sick last Wednesday and had a horrible cough. I took him to the Dr on Friday and said he had the flu. After another sleepless night and trying to break his fever (highest at 103.8) we decided to take him to the ER. We were in the ER for about 6 hours when they told us that they were going to admit him because his White Blood count was extremely low and thought that he had pneumonia. With him being immune suppressed they did not want to take any chances. Once we got to the pediatric ward they put him in a isolation room. All the Dr's who came in had to wash up and wear a mask and gown. He was not allowed visitors. The DR came in this morning and said that he may have to stay another few nights and I called his Stanford Dr, DR. Lee faster than he could leave the room. She consulted a Infectious Disease DR and they decide that he could go home if we locked down the house. He is not to leave until we see her on Thursday. He was a little cranky boy today and was sick of being poked and tested for everything under the roof. He is very happy to be home and is ok with not leaving the house. I hope we get good news on Thursday. Wish him luck.

Zack, Zack, Zack!

Last week at his appointment Dr. Lee said he is looking really good. The things we are battling are his multiple styes he has on the inside of his eyes and his weight. We are going to see a Nutritionist as soon as they find one at Stanford for us. He is growing height wise but not weight. He is still the same weight as a year ago. So as things go now we just have to wait and see what the eye Dr finds. We saw her last week and she needs to research his disease and try and link the styes to his illness. We have to do eyelid scrubs and eye massages. Yeah to a 5 year old, that goes over well. I am excited about our next appointment, we are going to see our old Dr's from clinic. We have not seen them since we started the study. We go on the 31st of March.

Zack also started T-ball and his first game is this weekend. I will post pictures after the weekend is up.

Party Boy!!

Over the last few weekends Zack has gone to several birthday parties. I am still waiting for more pictures (Victor) but thought I would post what I have. He has some great freinds so we thought I would post some.

It's all his fault

Ok everyone this is Victor! I have been waiting for him to email me pictures of the boys and he has not done it. Everyone blame VICTOR.

My very very late update

So it has been awhile since our last appointment, it went well. All his blood work came back with great numbers. He has had some little issues but nothing too bad. He has a few styes in his right eye and have had a hard time getting rid of them. Our last appointment with his physical therapist she told us that we were going to cut back to every three weeks. She broke his heart. He misses PT and asks when he can go see Jackie again. Over all he is doing well. Not much to report.

Next Appointment

We go to our next appointment on Wednesday. Wish us luck. His face is pretty broken out right now so that scares me a little. I get so stressed out the week we go to Stanford. I know I havent done an update but there is only little things going on and so I will do it all on Wednesday night. I also have some new pictures to put up.

All the wonderful People at Stanford

So here are a few of the people that have made a difference in our lives. Dr Chira was the first Dr. we saw about Zacks Muscle disease. We have a soft spot for Dr. Chira. He is really a great person and Dr. We dont get to see Dr. Chira much anymore since we started the study and not going to clinic. Dr. Lee we saw at clinic also when Dr. Chira dumped us, I mean swtiched clinic days and so we were fortunate to get Dr. Lee. Dr. Lee has also been a HUGE part in Zack's journey through this all. She is a very warm and attentive Dr. I know because of these 2 Dr's Zack has made progress and will get better. We had 2 main nurses through Zack's infusion and they were Cathy and Sharon. These had to be the nicest nurses I have ever come in contact with. Both were always doing what they can to make Zack and I and whoever was with us comfortable. They certainly made these very stressful times for me better. I will never forget these 2 nurses. Thank you to all of them.

1/10/08 WOW what a difference

We had our last infusion today and I cant tell you how different it was from the previous infusions. We did not have to stop one time and Zack had no reactions. We are so happy at the out come today. I don't really have a whole lot to say about it besides it was a much easier day. Of course he was board and wanted to go home,and if that's all I had to deal with I will take it. He was in good spirits today and even played with some toys. We go back at the end of the month for some blood work and to see the studies PT to see if he is getting better. We will be going back every few weeks to see progress. We are confident that we will see progress with Zack, we wont take anything less. He will continue to see his regular Physical Therapist once a week at the Stanford clinic along with the study appointments. I took more pictures today of him and his Dr's/Nurses.

We love you Zacky

Zack and Friends

If anyone has a picture of Zack and his friends/you please send them to me and I will put them up. Thanks for this one Em, it is so cute!

Feedback

I have put some pictures up of Zack and some of his friends. If you do not want your child's picture on here please just let me know and I will take it down. I tried not to put names with the photos and have made this as secure as possible. I hope you all enjoy his page as I will be updating with pictures and other notes frequently.

1/4/08 update 7

Ok I have Zack settled in bed and now I can do a blog. We had his 3rd infusion today which we thought was going to be a breeze. In this study he is to have 4 total infusions, we believe that the first 2 he got the medicine because he had such bad reactions to the meds. Well, we went today and had more side effects and had to go real slow. It started off great and a few hours into it he got this real deep cough and got a fever, both of which he got the first week. We had to stop the infusion and give him some other medicine to calm it down. A few hours later he got a fever again and was ready to rip someones head off, boy he was not happy. He got real clammy and we had to reduce the medicine again. He really is not a mean or cranky kid so seeing him like this is terrible and he really feels bad after he calms down. I feel so bad for him when he is so helpless and crying so much. At one point I thought his nurse was going to start crying too. All in all we do still think he got the medicine the first two rounds and think he is just receiving the placebo now. He is in another flare up which means his disease is active and making him weaker, which is discouraging for me because he is going through all this and I don't feel like its working. His Dr. sat me down and explained to me that it will take longer than this to see results. We really love the Dr and all the nurses he deals with at Stanford. They are really great people. We go back in another week to do his last infusion and see his progress again. We will find out on week 28 of the study if he will get more infusions. (we are at week 9) He cant wait to go back to school and see his teacher and friends. I took some pictures of Zack today and will post them as soon as I download them.

12/6/07 update 6

Man oh man this SUCKS!!!! We went to the Dr yesterday for a follow-up on Zack's infusions and as our story goes it was not very good. He is going through a "flare up" and we have increased his medicine to get it under control again. I dont understand how this is happening while he is taking medicine and how he can have a flare up. It's like we are back to square 1. We just have to wait until his next infusion to see where we stand. The rash on his face is back and his Physical Therapist said his neck and legs are weaker. We knew going to the appointment that things were not so good. We could just tell. Im so sad for him. Keep your fingers crossed for him. I have to say that he is taking this all in stride. He is really a trooper. Just wanted to do an update

11/9/07 update 5

Hi Friends and Family,
I just wanted to do an update for you all on Zack. We were asked to be part of a study at Stanford and we agreed to do it. Basically he will have 4 infusions, two weeks in a row and off for six weeks and then in January he has another two. The study is a 44 week study. They told us the first two might just be saline or it could be the medicine and the other two the opposite. We had our first one yesterday Thursday the 8th. We got to Stanford at 8 in the morning and ended up being there all day. We got home about 11:30 in the evening. He was supposed to be on the machine for only six hours he ended up being hooked up for twelve. We had some complications during the infusion which means we got the medicine this round, which is good. His blood pressure went really low and got a fever. With that we had to stop the infusion assess the problem and then go back on the I.V. and start all over. We thought at one point he was going to have to stay the night because things had to slow down. The DR came in and wanted to up the dose so we did not have to stay. She thought that would it would be more devastating on him if he had to spend the night. He was pretty agitated in the beginning of the infusion and after some medicine which knocked him out he was pretty good. He slept the whole last part of the infusion. So we will be doing it again next week and we hope that he will not have reactions as bad. We are hoping that this helps. We will do anything that we can to help him get back to "normal". We are so proud of him, he really held up good through it all. Today? Can't even tell he went through it. He really bounces back like a big rubber ball. Just a little tired but overall doing real good. Any questions feel free to ask. Thanks for all the support.
Michelle

10/8/07 update 4

We found out that Zack really has not gotten better. We have noticed a change in him these past couple of weeks and knew that it would not be good. They say that his blood levels are good but his muscle stregnth is really poor. We have been in treatment for over 6 months now and they say the he should be well in recovery by now and he is not. We have chosen to be part of this study that Stanford is doing for his condition. He will be hooked up to a machine and he will be infused for a 6 hour treatment. He will do this once a week for 2 weeks and than off for 2 weeks and than back on. This study will last 44 weeks. This will supress the cell that is affecting him the most. He will stay on his Methotrexate and the Prednisone along wit the other meds during this time. We are leaving for vacation next week so we will begin this when we get back. He has been in Physical therapy for a few weeks now and we will continue this as well. I copy and pasted a few things from the study and the Medicine for more info:
Rituximab is a man-made antibody used to treat certain types of cancer. This study will determine whether rituximab is an effective treatment for adult and pediatric patients with dermatomyositis or polymyositis.
Rituximab is a monoclonal antibody used and approved since 1997 by the Food and Drug Administration (FDA) for the treatment of B-cell non-Hodgkin's lymphoma. It was approved in February 2006 for adult rheumatoid arthritis patients with an inadequate response to anti-TNF (tumor necrosis factor) agents. In this study, rituximab is considered to be experimental because it is not FDA approved for the treatment of dermatomyositis or polymyositis. The study doctors believe that the symptoms of myositis are related to the presence of B cells in the blood and rituximab is being given to reduce the number of blood B cells. This drug has been used in other research studies in patients with other rheumatologic and autoimmune diseases...:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
A total of 202 participants will be included in the study, including 152 adults and 50 children, at 36 centers across ..:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />North America and Europe, in a randomized, double blind, placebo-controlled phase 2 trial.
SIDE EFFECTS: The most common side effect of rituximab is a constellation of symptoms (fever, rigors and chills) that occur during administration of the first dose of drug. More than 80% of patients experience these side effects, and it is severe in 4-7 out of every 10,000 patients. The side effects appear only 40% of the time with the second dose of drug and decreases even less frequently with the last two doses. Other common side effects related to rituximab are nausea, hives, fatigue, headache, itching, difficulty breathing due to bronchospasm, a sensation of swelling of the tongue or throat, runny nose, vomiting, decreased blood pressure, flushing, and pain at the site of the tumor.

8/27/07 up-date 3

On Monday we went to Stanford and met with our Dr. We found out that Zack needs to go on a higher dose of Methotrexate which means he now has to take it through a shot. He has been on his meds for 5 months now and they say that he should be doing much better then he is. He still has his rash on his face and hands, his muscle strength is not as it should be and he now has arthritis in his right wrist. So he is still taking Prednisone and is doubling his Methotrexate. They want him to see a Physical Therapist 2 times a week to help him with his muscle strength. We really have felt that he is getting better and the Dr says he is but they want to be aggressive with this and really try and nip it in the bud. He has a better chance of less relapse in the future if we are aggressive now. Of course we want this but its going to be real tough. We start the new meds on Friday. With him starting Kindergarten we are hoping that he does well with all this change. We know he will. He has been a real trooper through this all.
As wise "old" woman has said to me that this is like a roller coaster, there will be ups and downs and when we go down we will loose our breath and our stomach will drop but we will go back up.
Thanks for all the support we have gotten from all of you, we really appreciate it.

5/22/07 Up-date 2

On Monday we went to Stanford for our regular visit and found out that his levels are not down as much as the Dr would have liked. They are concerned with him being on such a high level of Prednisone that his enzymes should be lower. So that means he has to be another medicine called Methotrexate. This medicine is a Chemotherapy medicine that is also used with Arthritis. It helps with the, you know I'm not really sure what it helps with. Ok I went to a medical site and got something to paste on here.
USES: Methotrexate is used to treat certain types of cancer or to control severe psoriasis or rheumatoid arthritis. This medication works by interfering with cell growth and by suppressing the immune system. Early treatment of rheumatoid arthritis with more aggressive therapy such as methotrexate helps to reduce further joint damage and to preserve joint function.

SIDE EFFECTS: See also Warning section. Nausea, vomiting, stomach pain, drowsiness or dizziness may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. Tell your doctor immediately if any of these serious side effects occur: mouth sores, diarrhea, fever, fatigue, persistent sore throat, unusual bleeding or bruising, black stools, skin rash, enlarged glands/lymph nodes, dark urine, bone pain, unusual pain and discoloration of the skin. Tell your doctor immediately if any of these unlikely but serious side effects occur: yellowing eyes/skin, change in the amount of urine, chest pain, dry cough, trouble breathing, calf pain/swelling, vision changes, irregular heartbeat, muscle weakness, mental/mood changes, seizures. Temporary hair loss may occur. Normal hair growth should return after treatment has ended. A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.
Ok does that help?
We start this on Friday and it is once a week treatment. He also has to take Folic acid to help him with Methotrexate.
We were shocked with the news of the blood work not being better because he really looks good and is getting more energy. His cheeks are getting puffy and is so cute with them. I tried taking a picture of him and he wont let me.
They said his rash is going to have to have some treatment also since that is not better too. They dont want him to have discoloration on his skin from this so we might have to treat that sepperatly.

Just wanted to update you