I can't believe the last time I updated this was in September.....I suppose I will just sum up the rest of these past months to end the year. I always said I would not be one of those who blog drop. Just forget about it.
Gary is doing good. We are coming off of a pretty good flare. Still determining what caused it. It was enough and long enough to warrant a medicine add. What was most important that we did not add more steroids if we didn't need too. Last month Gary was pulling full days in first grade. Even riding the bus. Suddenly his attitude changed. His self changed. He was angry a lot. He was not happy. Eventually, he would head to his room and insist he lay in his bed and relax. If we did have an errand to run, it ended in full on misery. It was hard to be around him. Then some hip pain, swelling of his face, super red rash all over. He would look chemically burned especially if he became active.
Right now he is getting IVIG every two weeks. He is getting 350mgs of steroids every two weeks. He gets Orencia once a month. His labs have been generally good. We did have a few in the past three months that jumped but came back down. It literally was like a his labs were on a bumpy road. Not enough to make changes, but enough to add that bit of information to make the recent change. We can't call that stable.
Gary's calcium deposits are doing. They are still there but no new ones. The ones around his bottom have been slowly shedding out. They bother him but don't hurt him. During a recent X-ray, they thought he was hiding something or things in his underpants. It was showing up on the X-ray. It ended up being calcium deposits. It didn't take me long to figure it out.
With this recent flare, school has become a challenge. Gary seems to be putting a lot of pressure on himself. He gets overwhelmed. Academically we want to give him extra help. By the time he gets home however, he is done. It will be ok though. It will work out. We will find what works for him.
This new medicine we added is called Immuran. We have to be careful to make sure he eats with it but he gets really nauseated. So far so good though. Immuran is another immune suppressor. It is two yellow pills. It is suppose to be a medicine that blocks the skin pathway. So we will see.
Tuesday, December 31, 2013
Thursday, September 12, 2013
Not the Worst
After our clinic appointment on Sep. 3, it was decided that we would go to see our GI doc, check in with him. Well I expected that to take awhile but they got us right in. I explained that we were seeing a bit of increase of diarrhea. Nothing crazy but here and there throughout the summer. So after collecting a "lab sample" which Gary can give on demand, turning it in to eliminate viruses and bacteria's that could cause, the doctor decided he wanted to do a repeat scope of both ends. Again, I thought ok, I agree we can't be to careful with Gary. I definitely didn't was make him go through that if it wasn't necessary.
I expected that to take awhile to get in. But nope. They got us on the schedule immediately. We even had to stick around on Monday the whole day to hit a pre-op appointment. That meant Gary was to immediately alter his diet for the bowel prep. We had a light breakfast that morning. Gary was already talking about lunch.
The nurse said to run out, get lunch, then start. We had to avoid certain foods like fruits, vegetables, nuts, seeds, red dye. So that wasn't terribly hard. I decided since Gary had to go through it I would do. All except the laxative part. The next day Gary could only have clear liquid, jello, and Popsicles and 8 glasses of water with 3 doses of Miralax four hours apart. Since I wasn't going to do the laxative part I completely fasted and did water only. After 7pm the night before Gary could only have water. By 8am the morning of, nothing by mouth. He truly handled it like a champ. It got a little rough in the morning. We had several conversations about why he couldn't have anything. He kept forgetting. Our appointment was at 12:15. We arrived at the hospital by 12:00. At this point, Gary's body was starting to respond to his fast and clean out. He became extremely lethargic. He was getting the hot and cold sweats. He basically could not stay awake. He passed out in the hospital waiting room. It was about 45 minutes past our time they said to be there so I went and asked. He was sleeping on the floor at this point. I felt his pain but I didn't do the laxative so at most I was spacey with trouble focusing.
I approached the desk to ask where we were at in line. I asked how much longer it would be. I informed them that he was passed out on the floor. They said it would be soon. I asked for a warm blanket to keep him covered. At 1: 30 they came out to bring us back to the room prep. We wheeled him back in the wheel chair. He was even having trouble holding his head up and keeping his eyes open. I was thankful he slept but it was hard seeing him in that state. We got him in his gown. Finally got his port accessed. And at 3 o'clock, he went to back.
I was able to go all the back with him. They let me help with the gas. He was so lethargic that he did not fuss once bit. Very little anxiety. He didn't have anything to give. His eyes were glassy. He could barely respond. I was concerned but he did answer questions, and even gave a half smile to a nurse. I was so happy that got on with it.
The results weren't perfect, but they were better from his last scope last year. I think it has been even more than a year? His colon did have signs of ulceration's, but I think those were the old ones. The only other thing was 2 parts of his stomach were irritated. His esophagus looked fine but further down the tummy right before the small intestine, there was inflammation. There was no ulceration's just irritation with a little blood.
Yes, I wanted him to come out and say, "everything looks normal". But with what he saw, the doctor is almost certain he would like to run the medicine we gave him last year, Remicade. He told us that he would wait for the biopsies to come back but he was pretty sure he leaning towards that. I told him that a discussion with rheumatology will definitely need to happen as I had talked with them about we were worry that the Remicade worked really great on his IBD or Crohn's, or whatever they want to call it, but not so great on the JDM. We can't be sure it was the Remicade that suddenly had him limping and having trouble swallowing. I would hate to go on, well lets try it and see. That is hard. I am very curious to see what rheumatology has to say about it. I was clear with one thing. I do not want an increase in steroids. I mean if it was a life saving thing then of course.
Right now we are pretty tired. We still have a MRE to go in the next couple weeks. Tomorrow we have an all day infusion. This was a bumped infusion from Wednesday because of the scopes. They originally wanted to do it today (Thursday). We did not get home until after 8 last night. He was exhausted. He slept so much in recovery. He woke up crying and needing to go to the bathroom. The first thing I had waiting for him was a chocolate starbucks frappacino thing (no coffee in it of course). I started to let him drink it when the transport nurse stopped me and said, "he is going to throw that up with the anesthesia in him!". I apologized but was like so be it. I told this child he had to make it to 12:15. You guys took it all the way to 3 o'clock. But that was my inner dialogue. I fully recognize they don't have control over everything. Besides Gary did at least sleep. I kept giving sips of his drink when they weren't looking. It is my child, my vomit, I can clean it if I want too. I just knew that he wouldn't barf it up. He didn't either. If he did, at least it would taste good.
I am so impressed with my son. He is starting to handle things a little better. It makes it a little less challenging dealing with a that 2 to 5 year old when all he did was cry and behave badly in response to what was happening to him. Now I think he understands a little bit better. I wish he didn't have to but he does. I can be sad for that but no use in getting angry by it from a mother stand point. That just doesn't do any good. You do what do.
CALCIUM
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Wow. On top of that we have been dealing with calcium deposits. He has a deposit on his elbow and another in his bottom that have made there way to surface of his skin. The one on his elbow grew to the size of a larger marble. After a hot shower it burst. I know it sounds gross. I am just completely fascinated by it. The one in his bottom is quite tender. But the one on his elbow doesn't seem to bother him like that. Once it released a little bit, it seems to fill back up. So now every time he take a bath or shower, it releases calcium. Gary helps it along by gently pushing on it. I will stop right there with the details. The one thing that is important to me that no one in this family is allowed to say is, "gross". I do not want him to feel embarrassed or ashamed by this. I encourage everyone to maybe raise an eyebrow or say "wow"!, but it is just so important to me that no one acts as if it the most disgusting thing they have ever seen. I don't care if you do. Don't show it. I'm sure he knows it yucky. The tender deposit on his bottom might need some sort of wound care eventually. The open wounds do concern me but they seem to seal off with calcium when it dries up.
Thank you so much to my baby sister who came with us. It makes such a difference. He loves his Aunties to pieces. It was a big sacrifice for her because she hasn't been feeling good. Don't worry, you can't catch what she has : )
This morning he sleeps.
FASTING
My husband was suppose to fast with Gary and I. I understood the other kids not doing it with being in school and everything but.....we agreed we would wait until Gary was done. I estimated it would be about 3pm. So I told him at 3pm he could eat. He made it to 11:45. Good thing he was at work. I understand you have to be at work, but if your not gonna be with him, then at least starve to death, LOL :) It was less than 24 hours for Dad.
I expected that to take awhile to get in. But nope. They got us on the schedule immediately. We even had to stick around on Monday the whole day to hit a pre-op appointment. That meant Gary was to immediately alter his diet for the bowel prep. We had a light breakfast that morning. Gary was already talking about lunch.
The nurse said to run out, get lunch, then start. We had to avoid certain foods like fruits, vegetables, nuts, seeds, red dye. So that wasn't terribly hard. I decided since Gary had to go through it I would do. All except the laxative part. The next day Gary could only have clear liquid, jello, and Popsicles and 8 glasses of water with 3 doses of Miralax four hours apart. Since I wasn't going to do the laxative part I completely fasted and did water only. After 7pm the night before Gary could only have water. By 8am the morning of, nothing by mouth. He truly handled it like a champ. It got a little rough in the morning. We had several conversations about why he couldn't have anything. He kept forgetting. Our appointment was at 12:15. We arrived at the hospital by 12:00. At this point, Gary's body was starting to respond to his fast and clean out. He became extremely lethargic. He was getting the hot and cold sweats. He basically could not stay awake. He passed out in the hospital waiting room. It was about 45 minutes past our time they said to be there so I went and asked. He was sleeping on the floor at this point. I felt his pain but I didn't do the laxative so at most I was spacey with trouble focusing.
I approached the desk to ask where we were at in line. I asked how much longer it would be. I informed them that he was passed out on the floor. They said it would be soon. I asked for a warm blanket to keep him covered. At 1: 30 they came out to bring us back to the room prep. We wheeled him back in the wheel chair. He was even having trouble holding his head up and keeping his eyes open. I was thankful he slept but it was hard seeing him in that state. We got him in his gown. Finally got his port accessed. And at 3 o'clock, he went to back.
I was able to go all the back with him. They let me help with the gas. He was so lethargic that he did not fuss once bit. Very little anxiety. He didn't have anything to give. His eyes were glassy. He could barely respond. I was concerned but he did answer questions, and even gave a half smile to a nurse. I was so happy that got on with it.
The results weren't perfect, but they were better from his last scope last year. I think it has been even more than a year? His colon did have signs of ulceration's, but I think those were the old ones. The only other thing was 2 parts of his stomach were irritated. His esophagus looked fine but further down the tummy right before the small intestine, there was inflammation. There was no ulceration's just irritation with a little blood.
Yes, I wanted him to come out and say, "everything looks normal". But with what he saw, the doctor is almost certain he would like to run the medicine we gave him last year, Remicade. He told us that he would wait for the biopsies to come back but he was pretty sure he leaning towards that. I told him that a discussion with rheumatology will definitely need to happen as I had talked with them about we were worry that the Remicade worked really great on his IBD or Crohn's, or whatever they want to call it, but not so great on the JDM. We can't be sure it was the Remicade that suddenly had him limping and having trouble swallowing. I would hate to go on, well lets try it and see. That is hard. I am very curious to see what rheumatology has to say about it. I was clear with one thing. I do not want an increase in steroids. I mean if it was a life saving thing then of course.
Right now we are pretty tired. We still have a MRE to go in the next couple weeks. Tomorrow we have an all day infusion. This was a bumped infusion from Wednesday because of the scopes. They originally wanted to do it today (Thursday). We did not get home until after 8 last night. He was exhausted. He slept so much in recovery. He woke up crying and needing to go to the bathroom. The first thing I had waiting for him was a chocolate starbucks frappacino thing (no coffee in it of course). I started to let him drink it when the transport nurse stopped me and said, "he is going to throw that up with the anesthesia in him!". I apologized but was like so be it. I told this child he had to make it to 12:15. You guys took it all the way to 3 o'clock. But that was my inner dialogue. I fully recognize they don't have control over everything. Besides Gary did at least sleep. I kept giving sips of his drink when they weren't looking. It is my child, my vomit, I can clean it if I want too. I just knew that he wouldn't barf it up. He didn't either. If he did, at least it would taste good.
I am so impressed with my son. He is starting to handle things a little better. It makes it a little less challenging dealing with a that 2 to 5 year old when all he did was cry and behave badly in response to what was happening to him. Now I think he understands a little bit better. I wish he didn't have to but he does. I can be sad for that but no use in getting angry by it from a mother stand point. That just doesn't do any good. You do what do.
CALCIUM
.JPG)
.jpeg)
Wow. On top of that we have been dealing with calcium deposits. He has a deposit on his elbow and another in his bottom that have made there way to surface of his skin. The one on his elbow grew to the size of a larger marble. After a hot shower it burst. I know it sounds gross. I am just completely fascinated by it. The one in his bottom is quite tender. But the one on his elbow doesn't seem to bother him like that. Once it released a little bit, it seems to fill back up. So now every time he take a bath or shower, it releases calcium. Gary helps it along by gently pushing on it. I will stop right there with the details. The one thing that is important to me that no one in this family is allowed to say is, "gross". I do not want him to feel embarrassed or ashamed by this. I encourage everyone to maybe raise an eyebrow or say "wow"!, but it is just so important to me that no one acts as if it the most disgusting thing they have ever seen. I don't care if you do. Don't show it. I'm sure he knows it yucky. The tender deposit on his bottom might need some sort of wound care eventually. The open wounds do concern me but they seem to seal off with calcium when it dries up.Thank you so much to my baby sister who came with us. It makes such a difference. He loves his Aunties to pieces. It was a big sacrifice for her because she hasn't been feeling good. Don't worry, you can't catch what she has : )
This morning he sleeps.
FASTING
My husband was suppose to fast with Gary and I. I understood the other kids not doing it with being in school and everything but.....we agreed we would wait until Gary was done. I estimated it would be about 3pm. So I told him at 3pm he could eat. He made it to 11:45. Good thing he was at work. I understand you have to be at work, but if your not gonna be with him, then at least starve to death, LOL :) It was less than 24 hours for Dad.
Wednesday, September 4, 2013
Summer to Fall
I think this might be the longest stretch I have gone without posting an entry. We left off in June. I suppose I will just dive right in.
RE-CAP
So we did a little taper at the beginning of summer. It started with his home does. We went from 10mgs to 8mgs. That was successful. Very small move. The next change we made was the IVIG and Methopred dose. He was getting 350mgs of methoprednisone once a week. IVIG and Orencia once a month. I wanted to try splitting the dose to IVIG up. My reasoning was his skin became so clear after those monthly infusions but didn't last long. So our doctors consulted with the experts and they agreed it couldn't hurt. That is when we went ahead and implemented the second taper. We did not go down in dose but rather spaced out the steroid to every two weeks. That was in July and August. Our September appointment was yesterday. Gary is doing well but not well enough to keep tapering. We had a few labs tick up twice. Not jump up, just slight tick up a few points. His AST and ALT are a low high. I really wanted to hear lets keep tapering. There are smalls signs of inflammation. Calcium deposits have been making there exits. Our doctor says she would be more comfortable if they were just gone first, then taper steroids. But we have to try. 1 year and 2 months of once a week methopred pulses is enough. But if we get to aggressive with our taper, that could lead us back to a place we don't want to be. A place we are heading? His cuticles look great. His skin is ok.
Two years ago when we tapered all the way down to 1mg of prednisone with no weekly pulses, it ended in disaster. The onset of this diarrhea. Nothing that was alarming but just enough that we ended up with one little sick boy. A boy who wasn't absorbing medications. And now, it is slowly making its return. I am thrilled with how well Gary does with what he has. I am being pulled into the great darkness of worry again. At the beginning of summer I was feeling hopeful and empowered. I told them to be careful with me. I am in this game with myself of were tuff, we can take it. Let Gary's body figure this out on his own. I want to see him normalize. Feels like my rug was pulled out from underneath me yesterday. I am standing backup however. We will get this figured out. We have a repeat stool test and see the GI doctor on Monday.
SCHOOL
Today was the first day of first grade. I made it all the way out to the parking lot before I boo hoo'd! Yay me. Drove to school at lunch to check on him. Put more sunblock on him. Everything was going great which made me feel better. Cookies and fresh bread are baking.
RE-CAP
So we did a little taper at the beginning of summer. It started with his home does. We went from 10mgs to 8mgs. That was successful. Very small move. The next change we made was the IVIG and Methopred dose. He was getting 350mgs of methoprednisone once a week. IVIG and Orencia once a month. I wanted to try splitting the dose to IVIG up. My reasoning was his skin became so clear after those monthly infusions but didn't last long. So our doctors consulted with the experts and they agreed it couldn't hurt. That is when we went ahead and implemented the second taper. We did not go down in dose but rather spaced out the steroid to every two weeks. That was in July and August. Our September appointment was yesterday. Gary is doing well but not well enough to keep tapering. We had a few labs tick up twice. Not jump up, just slight tick up a few points. His AST and ALT are a low high. I really wanted to hear lets keep tapering. There are smalls signs of inflammation. Calcium deposits have been making there exits. Our doctor says she would be more comfortable if they were just gone first, then taper steroids. But we have to try. 1 year and 2 months of once a week methopred pulses is enough. But if we get to aggressive with our taper, that could lead us back to a place we don't want to be. A place we are heading? His cuticles look great. His skin is ok.
Two years ago when we tapered all the way down to 1mg of prednisone with no weekly pulses, it ended in disaster. The onset of this diarrhea. Nothing that was alarming but just enough that we ended up with one little sick boy. A boy who wasn't absorbing medications. And now, it is slowly making its return. I am thrilled with how well Gary does with what he has. I am being pulled into the great darkness of worry again. At the beginning of summer I was feeling hopeful and empowered. I told them to be careful with me. I am in this game with myself of were tuff, we can take it. Let Gary's body figure this out on his own. I want to see him normalize. Feels like my rug was pulled out from underneath me yesterday. I am standing backup however. We will get this figured out. We have a repeat stool test and see the GI doctor on Monday.
SCHOOL
Today was the first day of first grade. I made it all the way out to the parking lot before I boo hoo'd! Yay me. Drove to school at lunch to check on him. Put more sunblock on him. Everything was going great which made me feel better. Cookies and fresh bread are baking.
Monday, June 24, 2013
Steroid Taper: Ready or Not
Summer is here. Kindergarten has been completed. It definitely was a rock n roll kind of year but we muddled through somehow. Gary finished out the year amazingly well. We did get to the end of the year only to find out there was some error in communication. He was under doctors orders to have sunblock applied mid day, everyday. Not sure what happened but that stopped happening. That is ok though, well, it is unfortunate but since he will be going to school full time in September, I will drive there myself at noon to apply it. I put it on in the morning but it needs to be applied again. So.
Gary is doing pretty good. I am really sick, and concerned about too much steroids. Last week at our monthly admission of IVIG and Orencia infusion I let it be known. We are not sure if his disease activity is off but trying to figure out if his body is just steroiding out (red skin, muscle irritation) or if the steroids are holding JDM and it is still getting through.
GETTING BOLD
The first bold attempt we made was holding off on his Rituxan treatment. We are in and have been in the war of what is working and what is not. So in May I was schedule for surgery. I had to call and delay the treatment until I was better. We had already talked about not giving it. Well I had said (before I even knew about my surgical future), what about not giving it to him? The doctor shrugged and said, "oh yeah, why?" and "ok/". We are all really at this lets cross that bridge when we get to it in his treatment. I think we all know that we need to make a move. We need to see what his body does. It is like playing Texas Hold Em.
I know this can get dangerous and only end in a monstrous flare. The old me would have been on the NO WAY train but I really want my little guy to have a normal life, or something that resembles it. He sported the moon face the entire kindergarten year. I hope we can start first grade with no cheeks, and no flares.
What starts to stop me in this is his calcium deposits. Some have gone way. Some have shed out. Some are large. Some are angry. Some are staying the same. What I haven't noticed is any new ones. It is often hard to tell because he has so many. Trying to figure out if something is new, is next to impossible.
So the taper. The doctor decided to first mess around with his home dose. We are going from 12mg to 10mg, to 8mg. Meaning this week he went down to 10mg. In two weeks we will try to nudge down to 8mg. So no Rituxan, and tapering steroids. Told you we are getting bold. He will still get a weekly pulse of 350mgs at the infusion center. Sure it is nerve wracking. Two weeks ago his ast and alt popped up but came back down on there own. So my theme for this summer is, "On Your Own". Come on Gary's body, do this on your own.
NOT ABOUT GARY: SHOTS and IV's
I had a salpingo oophorectomy on May 28th. It is the first time I have ever had surgery. There was a large mass on my ovary (10cm). I got to experience the weigh-ins, height measurements, temperature readings, arm huggs, shots, pokes, prodes, medicines, ect,. Everything my little man goes through. I am still not over the shot of heparin they gave me in the back of my arm. They did an excellent job with my iv's. I had a total of three. But the big one, the man nurse did amazing. I didn't even feel it. It was on the top of my hand too. However, I have had IV's started when having the babies, and those did burn and hurt. Not trying to take anything away from Gary by saying that. The month of May for our family was pretty stressful. Walking around not sure if you will get to grow old was hard to take. I went from running 50 miles a week to a stand still. Like hitting a brick wall. My family did a wonderful job supporting and nurturing me through it. Recovery has been good but a little hard. My diagnosis ended up being benign but I did have endometriosis. I get the pleasure of taking birth control pills to stop it from happening again to my other ovary. I am post op 4 weeks tomorrow. I am still uncomfortable at times, working my way off of narcotic pain relievers. I am having a really hard time sleeping but as soon as I can get back to my regular exercise it will be better. I can sweat this stuff out of my system and get back to me. Did I tell you I got a shot in the back of my arm and there is still a big knot. I don't know how these kids do it. My favorite was when they took my temperature. They handed me the thermometer. I was use to having to watch Gary have it put in his mouth for him for the past four years, I opened my mouth and waited for the nurse to put it in my mouth. When I realized she was handing it to me, I blushed. LOL. I also gave Gary's date of birth a few times because I am in such habit of saying his numbers.
My next challenge is a 1/2 marthon in Chicago on July 21. Yep, it should be interesting. As always I am excited to here about the lastest and the greatest in the world of JDM.
I HAVE AN AWESOME DOCTOR
Well, Gary does. Think I have mentioned my liking of her before but I'm back to praise again. Dr. A is amazing. She took on a huge project. She charted and graphed Gary's care since diagnosis. I myself had attempted it. I had put it into a timeline app. I had it all finished when the app crashed and I lost it all. But I was moved to tears. She handed me this 27 page packet. It has a summary of every visit. What is symptoms were, what he was on, ect,. She also graphed it! She got graph paper and was making a visible timeline. They are in search of a connection. TEARS They often asked me has there ever been a time when you thought Gary was JDMless. Like what medicines was he on when I felt like that. My answer has always been, "I don't know." We have always been on so many things at once. Like cell cept and tacrolimus. I think his skin was good back then but he had this under lying muscle weakness that I failed to see until JDM finally took over as the calcium developed and everything was abruptly changed because he was going over a cliff. He had good skin for a short time but had a lot trouble with stairs, getting up on beds, into cars. We always just dismissed it away or being on eveything he was on you completely rationalize it. Now, if I could go back and whisper to myself, I would have said, "get off this train, its goes nowhere". But just like we are right now, its the same predicament. Do I feel like he is good enough to taper steroids. It is hard to tell. It is hard to say. I am not sure. I do know at this point in time we are ready to see what happens. My biggest fear is getting him a path that we can't get him off, waiting for something new to kick in. Or going back to what worked before, but didn't fix it. Cytoxan, only got him so good. Rituxan, fine and dandy, but it didn't turn it off. That is our ultimate goal. A cure. A cure is our ultimate goal.
Thank you Dr. A! We love you! That packet is tough to read through. It is like reading a story from the -Horror/Fiction section.
Gary is doing pretty good. I am really sick, and concerned about too much steroids. Last week at our monthly admission of IVIG and Orencia infusion I let it be known. We are not sure if his disease activity is off but trying to figure out if his body is just steroiding out (red skin, muscle irritation) or if the steroids are holding JDM and it is still getting through.
GETTING BOLD
The first bold attempt we made was holding off on his Rituxan treatment. We are in and have been in the war of what is working and what is not. So in May I was schedule for surgery. I had to call and delay the treatment until I was better. We had already talked about not giving it. Well I had said (before I even knew about my surgical future), what about not giving it to him? The doctor shrugged and said, "oh yeah, why?" and "ok/". We are all really at this lets cross that bridge when we get to it in his treatment. I think we all know that we need to make a move. We need to see what his body does. It is like playing Texas Hold Em.
I know this can get dangerous and only end in a monstrous flare. The old me would have been on the NO WAY train but I really want my little guy to have a normal life, or something that resembles it. He sported the moon face the entire kindergarten year. I hope we can start first grade with no cheeks, and no flares.
What starts to stop me in this is his calcium deposits. Some have gone way. Some have shed out. Some are large. Some are angry. Some are staying the same. What I haven't noticed is any new ones. It is often hard to tell because he has so many. Trying to figure out if something is new, is next to impossible.
So the taper. The doctor decided to first mess around with his home dose. We are going from 12mg to 10mg, to 8mg. Meaning this week he went down to 10mg. In two weeks we will try to nudge down to 8mg. So no Rituxan, and tapering steroids. Told you we are getting bold. He will still get a weekly pulse of 350mgs at the infusion center. Sure it is nerve wracking. Two weeks ago his ast and alt popped up but came back down on there own. So my theme for this summer is, "On Your Own". Come on Gary's body, do this on your own.
NOT ABOUT GARY: SHOTS and IV's
I had a salpingo oophorectomy on May 28th. It is the first time I have ever had surgery. There was a large mass on my ovary (10cm). I got to experience the weigh-ins, height measurements, temperature readings, arm huggs, shots, pokes, prodes, medicines, ect,. Everything my little man goes through. I am still not over the shot of heparin they gave me in the back of my arm. They did an excellent job with my iv's. I had a total of three. But the big one, the man nurse did amazing. I didn't even feel it. It was on the top of my hand too. However, I have had IV's started when having the babies, and those did burn and hurt. Not trying to take anything away from Gary by saying that. The month of May for our family was pretty stressful. Walking around not sure if you will get to grow old was hard to take. I went from running 50 miles a week to a stand still. Like hitting a brick wall. My family did a wonderful job supporting and nurturing me through it. Recovery has been good but a little hard. My diagnosis ended up being benign but I did have endometriosis. I get the pleasure of taking birth control pills to stop it from happening again to my other ovary. I am post op 4 weeks tomorrow. I am still uncomfortable at times, working my way off of narcotic pain relievers. I am having a really hard time sleeping but as soon as I can get back to my regular exercise it will be better. I can sweat this stuff out of my system and get back to me. Did I tell you I got a shot in the back of my arm and there is still a big knot. I don't know how these kids do it. My favorite was when they took my temperature. They handed me the thermometer. I was use to having to watch Gary have it put in his mouth for him for the past four years, I opened my mouth and waited for the nurse to put it in my mouth. When I realized she was handing it to me, I blushed. LOL. I also gave Gary's date of birth a few times because I am in such habit of saying his numbers.
My next challenge is a 1/2 marthon in Chicago on July 21. Yep, it should be interesting. As always I am excited to here about the lastest and the greatest in the world of JDM.
I HAVE AN AWESOME DOCTOR
Well, Gary does. Think I have mentioned my liking of her before but I'm back to praise again. Dr. A is amazing. She took on a huge project. She charted and graphed Gary's care since diagnosis. I myself had attempted it. I had put it into a timeline app. I had it all finished when the app crashed and I lost it all. But I was moved to tears. She handed me this 27 page packet. It has a summary of every visit. What is symptoms were, what he was on, ect,. She also graphed it! She got graph paper and was making a visible timeline. They are in search of a connection. TEARS They often asked me has there ever been a time when you thought Gary was JDMless. Like what medicines was he on when I felt like that. My answer has always been, "I don't know." We have always been on so many things at once. Like cell cept and tacrolimus. I think his skin was good back then but he had this under lying muscle weakness that I failed to see until JDM finally took over as the calcium developed and everything was abruptly changed because he was going over a cliff. He had good skin for a short time but had a lot trouble with stairs, getting up on beds, into cars. We always just dismissed it away or being on eveything he was on you completely rationalize it. Now, if I could go back and whisper to myself, I would have said, "get off this train, its goes nowhere". But just like we are right now, its the same predicament. Do I feel like he is good enough to taper steroids. It is hard to tell. It is hard to say. I am not sure. I do know at this point in time we are ready to see what happens. My biggest fear is getting him a path that we can't get him off, waiting for something new to kick in. Or going back to what worked before, but didn't fix it. Cytoxan, only got him so good. Rituxan, fine and dandy, but it didn't turn it off. That is our ultimate goal. A cure. A cure is our ultimate goal.
Thank you Dr. A! We love you! That packet is tough to read through. It is like reading a story from the -Horror/Fiction section.
Saturday, May 18, 2013
Ok, so I over reacted.
I would like to temporarily apologize to Orencia. We ended up doubling the dose. One last ditch. I like what I saw. I like what I see. Remission worthly someday, maybe. I don't know though.
We have some calcium deposits that are on the move. That means they are coming to the surface, red puffy, but not bothering. They look no good but this aint a beauty contest.
This was month number two of double dosing Orencia. We were set to run Rituxan last week but for the first time in four years, I had to call and cancel. We might run it next month. I feel guilty because it was I just couldn't handle it right now. I'm not ready to share why but I will. Everything is for reason however. I was hesitant to run Rituxan again because it is so difficult to tell what is working and what is not working. Labs are good. Strength is fine. Calcium, no new ones but bigger. Capillaries not bad just red fingers.
He is an amazing kid. He is so angry but whatever. What a special boy. He says the greatest things!
Thank you to my family for all your help with everything. My baby sister is such a great mother to my kids. They really love her and my brother-in-law. She is almost too good. Makes me wonder if other plans have been set in motion. I know in my heart that if something like that is true, like I can't be here, she will be so perfect.
We have some calcium deposits that are on the move. That means they are coming to the surface, red puffy, but not bothering. They look no good but this aint a beauty contest.
This was month number two of double dosing Orencia. We were set to run Rituxan last week but for the first time in four years, I had to call and cancel. We might run it next month. I feel guilty because it was I just couldn't handle it right now. I'm not ready to share why but I will. Everything is for reason however. I was hesitant to run Rituxan again because it is so difficult to tell what is working and what is not working. Labs are good. Strength is fine. Calcium, no new ones but bigger. Capillaries not bad just red fingers.
He is an amazing kid. He is so angry but whatever. What a special boy. He says the greatest things!
Thank you to my family for all your help with everything. My baby sister is such a great mother to my kids. They really love her and my brother-in-law. She is almost too good. Makes me wonder if other plans have been set in motion. I know in my heart that if something like that is true, like I can't be here, she will be so perfect.
Saturday, March 30, 2013
Orencia
Farewell.
Your not the one.
I tried. I know we have only been in a relationship since December. Harshly enough, we are breaking up. You don't block muscle weakness.
Buh bye. I will handing in my next resignation very very soon. Kiss it too the.............phew.
When family members notice strength isn't what it was. When weird rashes appear that you try to explain away. You make me grieve.
Conversation: "We should sign Gary up for baseball." "Yeah I don't know. It's too sunny and he seems, not all the way."
A DREAM
Gary ended up in my bed one night last week. I woke to him tapping me. In a whisper, "Mom, do you think I am going to pass away? What would happen if I did?". In my light sleep, "don't, I would be so sad."
But if you need to some day. I don't want you to be in pain because of me.
But know, we will FIGHT. I will drag you there if I have to baby! F to the U JDM. That is F to the U to the returning muscle weakness. To the labs that don't relieve themselves. Oh, I got this.
Your not the one.
I tried. I know we have only been in a relationship since December. Harshly enough, we are breaking up. You don't block muscle weakness.
Buh bye. I will handing in my next resignation very very soon. Kiss it too the.............phew.
When family members notice strength isn't what it was. When weird rashes appear that you try to explain away. You make me grieve.
Conversation: "We should sign Gary up for baseball." "Yeah I don't know. It's too sunny and he seems, not all the way."
A DREAM
Gary ended up in my bed one night last week. I woke to him tapping me. In a whisper, "Mom, do you think I am going to pass away? What would happen if I did?". In my light sleep, "don't, I would be so sad."
But if you need to some day. I don't want you to be in pain because of me.
But know, we will FIGHT. I will drag you there if I have to baby! F to the U JDM. That is F to the U to the returning muscle weakness. To the labs that don't relieve themselves. Oh, I got this.
Wednesday, March 27, 2013
Wednesday, March 13, 2013
March
It's March. Time is marching. Fast.
This month as been pretty good.
Gary had weird rash pop-up on his face these past couple weeks. It was confusing for me because the rash was exactly where a dermatomyositis rash would be. Cheeks, across the eyes. But this rash was a little different. It was raised, little bit of dry skin over the top of it, and it was on only one side of his face. Last week he woke up and it looked like it was making its way down the side of his face to his neck. I called the doctors. I explained what was going on. I thought maybe he was having a reaction of some kind to the steroid itself. We are after all still getting pulsed once a week. We keep expecting see improvement with the pulses but we weren't all the sudden. In fact, the methylopred or whatever is in it or the methotrexate or ect., was making it worse. I was concerned he was allergic to something or JDM was being activated somehow.
I love my doctor. She takes the time to listen, troubleshoot with me. We problem solve together. She checks in with our lead doctor. Our main rheumatologist was not interested in making any changes. I had suggested trying a different kind of steroid. I know they have them but I had yet to do any research on them. She didn't want. Instead, they ordered a dose of IV benadryl and tylenol. The reasoning was because the only time he hasn't reacted or he walks out of the hospital looking like a new man, is with the IVIG. IVIG has given us trouble in the past. This new brand however, stopped that and all seems well. So they talked about the difference between the dose of methylpred he gets with IVIG and the weekly infusions. What was the difference? The benadryl and the tylenol. Worked like a charm.
Once the IV benadryl went in, the rash on his neck instantly started to go away. It took another 24 hours for the one around his eye to go away but, it seem to solve a problem. Now, WHY? I have concluded when we go to our next appointment in clinic next week, I will have them point me in the direction of the allergist people. I wanted him tested for allergies.
SICK OF IT
I am growing tired of the media and there reports on what is causing autoimmune diseases. Since Gary has been diagnosed I tend to pay to the news when the title of the article reads, "Autoimmune" and scientists. You know, things of that nature. Of course it is going to catch my eye. So far I have read the following of too much causes autoimmune diseases: SUGAR, SALT, GLUTEN, PROCESSED FOODS, SUN, GENES. I would like to add my own. The WIND, RAIN, GRASS, CLOUDS, SKY, YOUR MOM, YOUR DAD, YOUR CAR.. . . . . . . . . . ..........I am aging. My tolerance is less. I do feel a bit arrogant and ungrateful with the information shared. Because what is comes down to is of course, I want to know. If we truly new then we would know where to pull the plug on it. I admit it triggers my "FAULT" emotion. If indeed it is salt, well then, its my fault. I fed him too much salt. I fed him too much sugar. But if that is the case then why doesn't his siblings have it. Why doesn't my best friends son have it? I will continue to read the articles. But I don't know what to believe. I have really started laughing it all off because it is frustrating for a parent. I suppose I compare it when they first introduced cigarettes. They marketed it was healthy. People believed it. I know that is a whole different realm. I was pointed out the media effect I suppose. Only God knows. I can't wait to get up to heaven. I will ask Him, "so, what is the cause really? don't worry I won't mad You can tell me." No worries, He won't be mad at me for saying that, He knows my sense of humor. He gave it me.
SCHOOL
Gary started at at new school. The schedule of this school actually isn't too bad at all. I was fearful but out the other two kids, Gary is doing very well. I met his gym teacher yesterday. He was very nice. He made me smile because he admitted he was nervous with Gary. He asked about his limitations, and his port. I told him that, yeah, he could take hit for someone, and it theoretically could knock the port out of placement. I explained however, it has been in since June. Gary runs, jumps, wrestles, swims, bathes, everything. I told him not worry. I think Gary does a great job protecting what he needs to protect on his body. I am glad that the transfer as gone smoothly. Excellent school. He goes full day on Monday, and Tuesday, and every other Wednesday. I switched his weekly pulses to Thursday, gives him the weekend to recover. Nice, huh?
This month as been pretty good.
Gary had weird rash pop-up on his face these past couple weeks. It was confusing for me because the rash was exactly where a dermatomyositis rash would be. Cheeks, across the eyes. But this rash was a little different. It was raised, little bit of dry skin over the top of it, and it was on only one side of his face. Last week he woke up and it looked like it was making its way down the side of his face to his neck. I called the doctors. I explained what was going on. I thought maybe he was having a reaction of some kind to the steroid itself. We are after all still getting pulsed once a week. We keep expecting see improvement with the pulses but we weren't all the sudden. In fact, the methylopred or whatever is in it or the methotrexate or ect., was making it worse. I was concerned he was allergic to something or JDM was being activated somehow.
I love my doctor. She takes the time to listen, troubleshoot with me. We problem solve together. She checks in with our lead doctor. Our main rheumatologist was not interested in making any changes. I had suggested trying a different kind of steroid. I know they have them but I had yet to do any research on them. She didn't want. Instead, they ordered a dose of IV benadryl and tylenol. The reasoning was because the only time he hasn't reacted or he walks out of the hospital looking like a new man, is with the IVIG. IVIG has given us trouble in the past. This new brand however, stopped that and all seems well. So they talked about the difference between the dose of methylpred he gets with IVIG and the weekly infusions. What was the difference? The benadryl and the tylenol. Worked like a charm.
Once the IV benadryl went in, the rash on his neck instantly started to go away. It took another 24 hours for the one around his eye to go away but, it seem to solve a problem. Now, WHY? I have concluded when we go to our next appointment in clinic next week, I will have them point me in the direction of the allergist people. I wanted him tested for allergies.
SICK OF IT
I am growing tired of the media and there reports on what is causing autoimmune diseases. Since Gary has been diagnosed I tend to pay to the news when the title of the article reads, "Autoimmune" and scientists. You know, things of that nature. Of course it is going to catch my eye. So far I have read the following of too much causes autoimmune diseases: SUGAR, SALT, GLUTEN, PROCESSED FOODS, SUN, GENES. I would like to add my own. The WIND, RAIN, GRASS, CLOUDS, SKY, YOUR MOM, YOUR DAD, YOUR CAR.. . . . . . . . . . ..........I am aging. My tolerance is less. I do feel a bit arrogant and ungrateful with the information shared. Because what is comes down to is of course, I want to know. If we truly new then we would know where to pull the plug on it. I admit it triggers my "FAULT" emotion. If indeed it is salt, well then, its my fault. I fed him too much salt. I fed him too much sugar. But if that is the case then why doesn't his siblings have it. Why doesn't my best friends son have it? I will continue to read the articles. But I don't know what to believe. I have really started laughing it all off because it is frustrating for a parent. I suppose I compare it when they first introduced cigarettes. They marketed it was healthy. People believed it. I know that is a whole different realm. I was pointed out the media effect I suppose. Only God knows. I can't wait to get up to heaven. I will ask Him, "so, what is the cause really? don't worry I won't mad You can tell me." No worries, He won't be mad at me for saying that, He knows my sense of humor. He gave it me.
SCHOOL
Gary started at at new school. The schedule of this school actually isn't too bad at all. I was fearful but out the other two kids, Gary is doing very well. I met his gym teacher yesterday. He was very nice. He made me smile because he admitted he was nervous with Gary. He asked about his limitations, and his port. I told him that, yeah, he could take hit for someone, and it theoretically could knock the port out of placement. I explained however, it has been in since June. Gary runs, jumps, wrestles, swims, bathes, everything. I told him not worry. I think Gary does a great job protecting what he needs to protect on his body. I am glad that the transfer as gone smoothly. Excellent school. He goes full day on Monday, and Tuesday, and every other Wednesday. I switched his weekly pulses to Thursday, gives him the weekend to recover. Nice, huh?
Tuesday, February 26, 2013
February
The month has gone so fast. I feel like my life is on fast forward sometimes.
We have already completed our monthly infusion. He received his IVIG, Orencia, Pamidronate, Methotrexate, and Methopred.
So in the midst of my busy busy busy change, we had some errors. I made a few errors. My mind has just been so focused on our move, it was very difficult to manage everything else. I even forgot to eat a few times. Good for the scale, but just a little example of why this happened. Gary switched from all liquids to pills. He will be six in 4 weeks so it was time. In the switch, I got a little confused with the pills. It just had to be one of the most important ones. Prednisone.
It was tiny. One tiny pill. Left off for about a week. It was bad timing because we also went down 100mgs on his IV Methyloprednisone to try and make it easier on him. It had been making him feel sick and very angry. The doctors agreed it would be safe to go down on the dose. So combine that with me leaving off the pill, and wa laa! He began to get very rashy, and had facial swelling. Good news was his labs held, and it didn't seem to effect the calcium deposits. But it obviously kicked off his JDM process. I recognized it right away however. I called after it only kept getting worse. I told them to kick that methopred back up to 350mgs, where it belongs.
Taking him into clinic was like going to confessional. (Or what I imagine it would be like). I let them know what happen. After clarifying what the I did or actually didn't do, they laughed. They only laughed at me because I of course it scared me that I could do that. This is my job. I am responsible for his health, his life, his disease. I caused this flare. They assured me that it was not the steroid pill. More than one doctor convinced me that there is just no way. The amount was much to small. They were convinced it was the methylprednisone that is what caused him to get rashy.
Despite the mishap, our doctor is still pleased with direction we are headed. No more calcium deposits, well he does have a few new ones on the front of his shins but I didn't discover those until after our overnight stay. But other than that, not to bad. Labs held through all that. I did remind them however, that is how Gary's JDM has always worked. Rash, then weakness, then calcium deposits. Hopefully we were able to stop it before any of that follows. What is frustrating is that was an unintentional test. No where near ready to taper. It is hard to because we have really been struggling with steroid rage and the effects of it. We have heard him say, "oh man my cheeks are so fat", placing his hands over them. He has been angry, and very moody. Very moody. We are hoping it also has to do with our recent move. He is adjusting. Right now he is on a little extended vacation from Kindergarten while our family settles in so that nice.
I was looking through some old pictures that were from last year. One I found shocked me. I can barely stand to look at it. He was clearly very sick in the picture. We had tapered down to 1ml steroids. It was during the not absorbing anything days. Clearly, not only was he not absorbing medications, but food as well.
We have already completed our monthly infusion. He received his IVIG, Orencia, Pamidronate, Methotrexate, and Methopred.
So in the midst of my busy busy busy change, we had some errors. I made a few errors. My mind has just been so focused on our move, it was very difficult to manage everything else. I even forgot to eat a few times. Good for the scale, but just a little example of why this happened. Gary switched from all liquids to pills. He will be six in 4 weeks so it was time. In the switch, I got a little confused with the pills. It just had to be one of the most important ones. Prednisone.
It was tiny. One tiny pill. Left off for about a week. It was bad timing because we also went down 100mgs on his IV Methyloprednisone to try and make it easier on him. It had been making him feel sick and very angry. The doctors agreed it would be safe to go down on the dose. So combine that with me leaving off the pill, and wa laa! He began to get very rashy, and had facial swelling. Good news was his labs held, and it didn't seem to effect the calcium deposits. But it obviously kicked off his JDM process. I recognized it right away however. I called after it only kept getting worse. I told them to kick that methopred back up to 350mgs, where it belongs.
Taking him into clinic was like going to confessional. (Or what I imagine it would be like). I let them know what happen. After clarifying what the I did or actually didn't do, they laughed. They only laughed at me because I of course it scared me that I could do that. This is my job. I am responsible for his health, his life, his disease. I caused this flare. They assured me that it was not the steroid pill. More than one doctor convinced me that there is just no way. The amount was much to small. They were convinced it was the methylprednisone that is what caused him to get rashy.
Despite the mishap, our doctor is still pleased with direction we are headed. No more calcium deposits, well he does have a few new ones on the front of his shins but I didn't discover those until after our overnight stay. But other than that, not to bad. Labs held through all that. I did remind them however, that is how Gary's JDM has always worked. Rash, then weakness, then calcium deposits. Hopefully we were able to stop it before any of that follows. What is frustrating is that was an unintentional test. No where near ready to taper. It is hard to because we have really been struggling with steroid rage and the effects of it. We have heard him say, "oh man my cheeks are so fat", placing his hands over them. He has been angry, and very moody. Very moody. We are hoping it also has to do with our recent move. He is adjusting. Right now he is on a little extended vacation from Kindergarten while our family settles in so that nice.
I was looking through some old pictures that were from last year. One I found shocked me. I can barely stand to look at it. He was clearly very sick in the picture. We had tapered down to 1ml steroids. It was during the not absorbing anything days. Clearly, not only was he not absorbing medications, but food as well.
Tuesday, January 22, 2013
2013 Off and Running
Two thousand thirteen is off and running. We have been going to the hospital once a week for overnight infusions. Not easy but we get through it. I think both of us are looking forward to a break. We have had a few medication switches to try and solve some relentless issues like coughing. Nothing major, clear lungs, ect,. But when something like that keeps happening we need to try and stop it. They switched his blood pressure medication. Didn't seem to help. Maybe a little bit. The cough comes at night mostly. Then we switched a medication that protects his stomach from the steroids. The doctor wanted to try one last time to try and go after his hoarse voice. It didn't last long. The medication gave him diarrhea. Food wasn't even digesting. Gross I know. But stopped that. It slowly resolved. Still having some issue though.
You can tell right now he is bogged down with medications. Rituxan and Orcencia, these back to back infusions make it difficult to determine if his JDM activity is doing well or not. Labs came back to normal and have stayed that way. Energy is ok. Rash is ok. Another factor is this time of year. January through April is always a very active time for his disease for some reason. They were concerned a few calcium deposits have gotten larger. This time we measured. She took her pen, drew a line around it. Gary thought that was great. A doctor, drawing on him with an ink pen. So we continue to wait and watch close. It is a finger tap sort of thing. I am doing my best to keep him healthy, active, and normal. Whatever that is. Can't wait for a break from the hospital.
You can tell right now he is bogged down with medications. Rituxan and Orcencia, these back to back infusions make it difficult to determine if his JDM activity is doing well or not. Labs came back to normal and have stayed that way. Energy is ok. Rash is ok. Another factor is this time of year. January through April is always a very active time for his disease for some reason. They were concerned a few calcium deposits have gotten larger. This time we measured. She took her pen, drew a line around it. Gary thought that was great. A doctor, drawing on him with an ink pen. So we continue to wait and watch close. It is a finger tap sort of thing. I am doing my best to keep him healthy, active, and normal. Whatever that is. Can't wait for a break from the hospital.
Friday, December 28, 2012
Battle of the Medications
Our monthly infusion was scheduled for the 26th this month. It was a little hard packing up and going to the hospital with fresh new toys, and clothes stacked in our bedrooms, waiting for us to play with them. But it was better then being there Christmas day.
The clinic was quiet has a mouse. Gary and I sort of enjoyed it. We were able to report to our doctor that things were fine. Nothing had changed which means Gary is holding. Doing well with strength. Tiny little things that can be dismissed. Skin rash, looks a little better. Nail folds, if I can't see any changes then I say thumbs up. The doctor didn't throw a party over them. I asked how they look, she shrugged and said the same. Well, ok. I am fine with that. Reviewing quickly, last month we stopped Cytoxan, started Abatacept/Orcenia. We had tried in November to go from every 7 to every 10 days between steroid infusions. That failed. So we went back to every seven with the start up of Orencia. The doctor decided to tweak a few of his support meds. We give him ceterzine at night for itching. She wants us to switch back to benadryl. She also wanted to switch his tummy protector. Ranidadine to Omeprazole. The reason was she wants to one last time target the hoarse voice. This has all been visited. This has all been done before but I thought, why not? I suppose I feel a little bit cynical. My feelings at first were ambivalent But with my sleep deprivation alleviated, I am flipping between well this is dumb and why not. But in the big picture, meeehhh, fine. Lets do it. Fine.
We were able to do a CMAS test. We had one done months ago in the middle of a long, drawn out flare. His score was 32. He improved all the way to a 38. This is out of 52. But given his age they say that is more out of a 45. So that is good.
8pm
There is one thing that you don't want to see. Doctors in your hospital room at 8pm, the day after Christmas. Labs came back surprisingly higher. His LDH doubled. 700 to 1400. A few other enzymes are creeping up. We were scheduled to come back in January for another round of Rituxan. That was suddenly moved up to Wednesday of next week.
We are upping methotrexate again.
The clinic was quiet has a mouse. Gary and I sort of enjoyed it. We were able to report to our doctor that things were fine. Nothing had changed which means Gary is holding. Doing well with strength. Tiny little things that can be dismissed. Skin rash, looks a little better. Nail folds, if I can't see any changes then I say thumbs up. The doctor didn't throw a party over them. I asked how they look, she shrugged and said the same. Well, ok. I am fine with that. Reviewing quickly, last month we stopped Cytoxan, started Abatacept/Orcenia. We had tried in November to go from every 7 to every 10 days between steroid infusions. That failed. So we went back to every seven with the start up of Orencia. The doctor decided to tweak a few of his support meds. We give him ceterzine at night for itching. She wants us to switch back to benadryl. She also wanted to switch his tummy protector. Ranidadine to Omeprazole. The reason was she wants to one last time target the hoarse voice. This has all been visited. This has all been done before but I thought, why not? I suppose I feel a little bit cynical. My feelings at first were ambivalent But with my sleep deprivation alleviated, I am flipping between well this is dumb and why not. But in the big picture, meeehhh, fine. Lets do it. Fine.
We were able to do a CMAS test. We had one done months ago in the middle of a long, drawn out flare. His score was 32. He improved all the way to a 38. This is out of 52. But given his age they say that is more out of a 45. So that is good.
8pm
There is one thing that you don't want to see. Doctors in your hospital room at 8pm, the day after Christmas. Labs came back surprisingly higher. His LDH doubled. 700 to 1400. A few other enzymes are creeping up. We were scheduled to come back in January for another round of Rituxan. That was suddenly moved up to Wednesday of next week.
We are upping methotrexate again.
Monday, December 3, 2012
7 to 10 day taper, NOT A GO
Ok. So, that didn't work.
From every seven to ten has been stamped FAIL. It failed not by labs but by calcium acting up on his knee and heliotrope rash coming in on his face. I had been calling the doctors in between the ten days. Explaining what I was seeing. The doctor I talked to is so awesome. She listens to my every word. We were both curious to see what the big wig in charge of Gary's treatment would say. On Thursday, during his clinic appointment, it didn't take long. She said we have all been patient with cytoxan. It was time to move on. So, cytoxan, its not you, its Gary. You have just grow apart, again.
MIXED EMOTIONS
Wow, after Thursday/Fridays infusion, am I glad to say good bye to cytoxan. I didn't realize just how bad the side effects of cytoxan are for Gary. I guess because he had gets IVIG with it, I thought it was the combo of the two. Our new flavor for the next couple months, Orencia. Sounds like a powerful greek goddess or something. Also known as abatacept. No idea if I am spelling that correctly. What I like: 30 minute infusion, not many side effects, well not like cytoxan. Biologic drug that is given to patients with rheumatoid arthritis. Stops the destruction of joint damage. Ok, so right off the bat I think, well Gary doesn't have joint damage per say. He does have large amounts calcium in his joints. So if you consider that damage well then yes. But damage as I understand is erosion of the actual joint. But at the same time, I can see what we are going for here. We are looking for his pathway. Where is Gary's immune system is his juvenile dermatomyositis coming from. Orencia targets Csomething and another Csomething. It is a costimulation modulator. I hate to say it, but I just drooled because in trying to understand that I forgot to close my mouth. I do know that I don't like the whole RA thing because that is not what is BUT, I do have it in my genes. A great grandmother with severe RA. Hands curled in, the whole shaabang. Another thing I liked about it, he felt so very great coming home. Usually he is screaming, close to puking, and feels not to great. So amazing to walk out of there, although rashy, feeling normal.
I hope this Orencia is strong enough to fill cytoxans shoes, however.
BACK IN THE NEWS
They brought back Pamidronate. They gave him a break from it for a couple months. But since he still on steroids at a higher dose, pamidronate it is to help prevent bone loss. I am all for it especially hearing about our friend Aiden who suffered an injury that turned into needing a bone replacement in his ankle. Like, he needs a donor bone sort of thing.
SEVEN
Failing the every ten is back to every seven. OH my STARS I thank God we put that port in. Amazing how He knows what you, and your children will need.
CALCIUM
Gary's elbow looks better each day that goes by. He does have a new trouble spot that we are keeping an eye on. Well, it is not new but it the calcium is coming out enough now that it is becoming a open wound. It is not huge but its location is bacteria prone, annoying, and not sure as an adult if I could handle it. It is high up enough he at least isn't forced to sit on it.
KINDERGARTEN
Gary has been able to attend school 31 days out of 51 day as of a few weeks ago. Naturally he is a little behind. He should be better with counting, sounds, and using more expressive story telling with his pictures. He has a wonderful teacher who is patient and kind. We are working with him at home the best we can. He will get it. I know he will.
FAMILY
We had a good Thanksgiving this year. We were so happy to have family visit from the east coast. Uncle Bill's family from New York. Gary was especially attached. He enjoyed just being around The Saas Grandparents so much. We cannot wait until the next visit.
Our family is enjoying the what looks to be the last set of holidays in our house. We have been so unbelievably blessed with the situation of having family right next door to us during these past 7 years. Especially during these past years of Gary's illness. To be honest, only God knows how we made it financially since Gary's diagnosis. But we know everything happens for a reason, and He is already taking very good care of us. We will miss our neighbors so very much, but know they are still nearby. I don't think there are words to describe just how many wonderful memories we have made with them (my sister and brother-in-law, my niece and nephew). Not many Aunties get to see there niece and nephew everyday. Get to see them grow up and be apart of their life. We are being careful to give all of our children the extra hugs and kisses through this change. Assuring them it will all be alright. Telling them that this is apart of life, and nothing stays the same. Gary especially I think looks to his older siblings for guidance. I think when we finally walk out that door for the last time, it won't be as easy as I am trying to make it sound, but it will be ok. *O and just in case anyone is wondering, Gary's Make A Wish is coming with us! We are not leaving it behind*
Now, onto keeping my house clean, like ALL the time for strangers to come walk through it. I can run twenty six miles, I can certainly keep a house clean with three children and a dog. *Gulp*
From every seven to ten has been stamped FAIL. It failed not by labs but by calcium acting up on his knee and heliotrope rash coming in on his face. I had been calling the doctors in between the ten days. Explaining what I was seeing. The doctor I talked to is so awesome. She listens to my every word. We were both curious to see what the big wig in charge of Gary's treatment would say. On Thursday, during his clinic appointment, it didn't take long. She said we have all been patient with cytoxan. It was time to move on. So, cytoxan, its not you, its Gary. You have just grow apart, again.
MIXED EMOTIONS
Wow, after Thursday/Fridays infusion, am I glad to say good bye to cytoxan. I didn't realize just how bad the side effects of cytoxan are for Gary. I guess because he had gets IVIG with it, I thought it was the combo of the two. Our new flavor for the next couple months, Orencia. Sounds like a powerful greek goddess or something. Also known as abatacept. No idea if I am spelling that correctly. What I like: 30 minute infusion, not many side effects, well not like cytoxan. Biologic drug that is given to patients with rheumatoid arthritis. Stops the destruction of joint damage. Ok, so right off the bat I think, well Gary doesn't have joint damage per say. He does have large amounts calcium in his joints. So if you consider that damage well then yes. But damage as I understand is erosion of the actual joint. But at the same time, I can see what we are going for here. We are looking for his pathway. Where is Gary's immune system is his juvenile dermatomyositis coming from. Orencia targets Csomething and another Csomething. It is a costimulation modulator. I hate to say it, but I just drooled because in trying to understand that I forgot to close my mouth. I do know that I don't like the whole RA thing because that is not what is BUT, I do have it in my genes. A great grandmother with severe RA. Hands curled in, the whole shaabang. Another thing I liked about it, he felt so very great coming home. Usually he is screaming, close to puking, and feels not to great. So amazing to walk out of there, although rashy, feeling normal.
I hope this Orencia is strong enough to fill cytoxans shoes, however.
BACK IN THE NEWS
They brought back Pamidronate. They gave him a break from it for a couple months. But since he still on steroids at a higher dose, pamidronate it is to help prevent bone loss. I am all for it especially hearing about our friend Aiden who suffered an injury that turned into needing a bone replacement in his ankle. Like, he needs a donor bone sort of thing.
SEVEN
Failing the every ten is back to every seven. OH my STARS I thank God we put that port in. Amazing how He knows what you, and your children will need.
CALCIUM
Gary's elbow looks better each day that goes by. He does have a new trouble spot that we are keeping an eye on. Well, it is not new but it the calcium is coming out enough now that it is becoming a open wound. It is not huge but its location is bacteria prone, annoying, and not sure as an adult if I could handle it. It is high up enough he at least isn't forced to sit on it.
KINDERGARTEN
Gary has been able to attend school 31 days out of 51 day as of a few weeks ago. Naturally he is a little behind. He should be better with counting, sounds, and using more expressive story telling with his pictures. He has a wonderful teacher who is patient and kind. We are working with him at home the best we can. He will get it. I know he will.
FAMILY
We had a good Thanksgiving this year. We were so happy to have family visit from the east coast. Uncle Bill's family from New York. Gary was especially attached. He enjoyed just being around The Saas Grandparents so much. We cannot wait until the next visit.
Our family is enjoying the what looks to be the last set of holidays in our house. We have been so unbelievably blessed with the situation of having family right next door to us during these past 7 years. Especially during these past years of Gary's illness. To be honest, only God knows how we made it financially since Gary's diagnosis. But we know everything happens for a reason, and He is already taking very good care of us. We will miss our neighbors so very much, but know they are still nearby. I don't think there are words to describe just how many wonderful memories we have made with them (my sister and brother-in-law, my niece and nephew). Not many Aunties get to see there niece and nephew everyday. Get to see them grow up and be apart of their life. We are being careful to give all of our children the extra hugs and kisses through this change. Assuring them it will all be alright. Telling them that this is apart of life, and nothing stays the same. Gary especially I think looks to his older siblings for guidance. I think when we finally walk out that door for the last time, it won't be as easy as I am trying to make it sound, but it will be ok. *O and just in case anyone is wondering, Gary's Make A Wish is coming with us! We are not leaving it behind*
Now, onto keeping my house clean, like ALL the time for strangers to come walk through it. I can run twenty six miles, I can certainly keep a house clean with three children and a dog. *Gulp*
Monday, November 12, 2012
10 Methoprednisone is a GO
It was a little rough in the beginning. I even called rheumatology to talk about how I thought he may not be tolerating the every ten days. Trick or Treating he barely made it back to the house. He limped in and practically collapsed on the floor. He said his legs hurt. His energy was low the next couple days that followed. I decided to call them on Friday just to let them know. My doctor is awesome. She is patient and kind. I was happy to call back on Monday to say, "nevermind" : )
I think Halloween was an overdue. We went to parties and had our own. Constantly on the go. This time it was just that. I do think he did respond to the spacing of the methoprednisone infusions, but his body I think was able to level out, stabilize on its own.
His nail folds are doing something weird, but I don't think it is from dermatomyositis. If it is, it must have something to do with the recovery or healing of the veins. He has been chewing on his nails quit a bit. I wish he wouldn't but he does. Bright red bumps and skin peeling. I am not concerned.
His skin looks good. Calcium deposits have leveled out. The same. Some have gotten smaller, some have got a little bigger, some are the same. His elbow is now closed. We have been not covering it. It does get irritated around the edges sometimes. But calcium "crusts" out of the wound. After a shower, it is rinsed away. He has one in his bottom that is still there. Slowing changing. Not doing much. As long as he doesn't complain.
Kindergarten is going well. Slowly catching up on missed work. That has been a challenge for us. It is hard for a Mom to make your baby do something they don't feel like doing at this age. But I am learning, be tough, and so will he.
I think Halloween was an overdue. We went to parties and had our own. Constantly on the go. This time it was just that. I do think he did respond to the spacing of the methoprednisone infusions, but his body I think was able to level out, stabilize on its own.
His nail folds are doing something weird, but I don't think it is from dermatomyositis. If it is, it must have something to do with the recovery or healing of the veins. He has been chewing on his nails quit a bit. I wish he wouldn't but he does. Bright red bumps and skin peeling. I am not concerned.
His skin looks good. Calcium deposits have leveled out. The same. Some have gotten smaller, some have got a little bigger, some are the same. His elbow is now closed. We have been not covering it. It does get irritated around the edges sometimes. But calcium "crusts" out of the wound. After a shower, it is rinsed away. He has one in his bottom that is still there. Slowing changing. Not doing much. As long as he doesn't complain.
Kindergarten is going well. Slowly catching up on missed work. That has been a challenge for us. It is hard for a Mom to make your baby do something they don't feel like doing at this age. But I am learning, be tough, and so will he.
Sunday, October 21, 2012
October Fun
350mg Methopred Infusion once a week.
Physical therapy once a week.
Took care of that limp.
He is still feeling the steroid effects. Big time.
We are contending with a stubborn ear and sinus infection right now. 2 weeks of augmentin, with a move on to a Z-Pac and we will see.
"This is the best I have seen him look". Do you know I have heard that so many times from the doctors. You look good too, doc. And don't even have millions of calcium deposits or are recovering from a tough couple months. Yes, they are right. But I really being the one that points out the obvious, reminds the masses, WHY he looks so so so great. Don't forget, the big cushion of steroid we have dumped into him over that past three months.
On Thursday when we checked in, it was our last day of Augmentin. He didn't even make it through the 2 weeks of being on that. We still had one more day of it. But it obvious he wasn't right. He wasn't feeling good. He seemed not right. He seemed red. He seemed more rashy. I don't know if the infection in his ears is triggering that or what. But that will soon be taking care of by the z pac. Hopefully.
The Plan
So the plan is to proceed with Cytoxan. I don't know for how long. Can't say I like it. But at this point we are playing by the rules. MOVE SLOW. He is stable. So no one move to fast to spook JDM. We are spacing out the methopred infusions every 10 tens, instead of every 7. Labs are great. Strength is 98.9%. Rash, pretty good. Nail folds, excellente compared to the past, calcinosis, no change, nothing bigger. Elbow is closed. Still healing. That has been a slow process.
Our infusion was a little rough. He ended throwing up at the end of IVIG and got red rashy, complained about his elbow. I told them to give him more benadryl. More zofran. He slept into the evening, then we were able to finally go home. It is so nice when you get your own room. And because of last months mistake, they made it up to me. My favorite nurse, my own room.
Physical therapy once a week.
Took care of that limp.
He is still feeling the steroid effects. Big time.
We are contending with a stubborn ear and sinus infection right now. 2 weeks of augmentin, with a move on to a Z-Pac and we will see.
"This is the best I have seen him look". Do you know I have heard that so many times from the doctors. You look good too, doc. And don't even have millions of calcium deposits or are recovering from a tough couple months. Yes, they are right. But I really being the one that points out the obvious, reminds the masses, WHY he looks so so so great. Don't forget, the big cushion of steroid we have dumped into him over that past three months.
On Thursday when we checked in, it was our last day of Augmentin. He didn't even make it through the 2 weeks of being on that. We still had one more day of it. But it obvious he wasn't right. He wasn't feeling good. He seemed not right. He seemed red. He seemed more rashy. I don't know if the infection in his ears is triggering that or what. But that will soon be taking care of by the z pac. Hopefully.
The Plan
So the plan is to proceed with Cytoxan. I don't know for how long. Can't say I like it. But at this point we are playing by the rules. MOVE SLOW. He is stable. So no one move to fast to spook JDM. We are spacing out the methopred infusions every 10 tens, instead of every 7. Labs are great. Strength is 98.9%. Rash, pretty good. Nail folds, excellente compared to the past, calcinosis, no change, nothing bigger. Elbow is closed. Still healing. That has been a slow process.
Our infusion was a little rough. He ended throwing up at the end of IVIG and got red rashy, complained about his elbow. I told them to give him more benadryl. More zofran. He slept into the evening, then we were able to finally go home. It is so nice when you get your own room. And because of last months mistake, they made it up to me. My favorite nurse, my own room.
Thursday, October 4, 2012
October
That month flew by, didn't it?
We are continuing on forward with the plan. Methopred Infusions on Wednesday. I am thinking that if we keep doing these, need to have them switched to Friday. He needs about two days recovery time.
Gary's elbow is still healing. It finally stopped drained last week. We currently keep those band aids that form a bubble around the wound. I am not sure I care for those but we will watch closely.
School has been a hit and miss. Mostly miss. I had a meeting with the teacher, speech, physical therapy, and counselor yesterday. Nothing but wonderful. I showed up with no make up. It is my warrior look. The school is accommodating, supportive, which pleases me. I asked about him and attendance policy. They assured me there will be no issue. I do hope after we gently pull away the pulses, he will miss way less. A low white cell count from the Cytoxan came back this week, so we went with caution and kept him out until it came back up. We checked yesterday before the infusion of methopred. Problem is the methopred and methotrexate make him feel sick so, another day. They also had me stop an antibiotic because they believed it was contributing to the lower count.
I want to thank the unknown person who sent our family that wonderful gift in the mail. I hope you know that you blessed our family in our time of need. Making ends meet seems to be getting more and more difficult. We had hoped things would be getting easier, but they are just not. Because of you, I didn't have to worry how I was going to get Gary to the hospital. We live 40 miles from the hospital so gas starts to become an issue during certain times in the pay period. I pray blessings 10 fold over you and yours. I know there are going to be changes coming for our family. But my job is to make it as easy as possible on the kids. Change is never easy, it is just a life lesson. We have wonderful friends and family around us who keep our world spinning.
Baltimore
I am heading to Baltimore next week. Once again, ask and you shall receive. Friends and family are making it possible for me to attend the Cure JM Conference in Baltimore. I am excited. A little nervous to leave Gary but he is in good hands. Running the full marathon on Saturday with a few of my Cure JM Buddies. I am honored to be running with my Blue Angel, Kelly. She was there when I crossed the finish line in Austin in 2010. It is going to be a great time. The foundation is working hard to meet our fundraising goal. I have received some pretty fantastic donations! Thank you to all. Donation Button over to the side bar>>>
We are continuing on forward with the plan. Methopred Infusions on Wednesday. I am thinking that if we keep doing these, need to have them switched to Friday. He needs about two days recovery time.
Gary's elbow is still healing. It finally stopped drained last week. We currently keep those band aids that form a bubble around the wound. I am not sure I care for those but we will watch closely.
School has been a hit and miss. Mostly miss. I had a meeting with the teacher, speech, physical therapy, and counselor yesterday. Nothing but wonderful. I showed up with no make up. It is my warrior look. The school is accommodating, supportive, which pleases me. I asked about him and attendance policy. They assured me there will be no issue. I do hope after we gently pull away the pulses, he will miss way less. A low white cell count from the Cytoxan came back this week, so we went with caution and kept him out until it came back up. We checked yesterday before the infusion of methopred. Problem is the methopred and methotrexate make him feel sick so, another day. They also had me stop an antibiotic because they believed it was contributing to the lower count.
I want to thank the unknown person who sent our family that wonderful gift in the mail. I hope you know that you blessed our family in our time of need. Making ends meet seems to be getting more and more difficult. We had hoped things would be getting easier, but they are just not. Because of you, I didn't have to worry how I was going to get Gary to the hospital. We live 40 miles from the hospital so gas starts to become an issue during certain times in the pay period. I pray blessings 10 fold over you and yours. I know there are going to be changes coming for our family. But my job is to make it as easy as possible on the kids. Change is never easy, it is just a life lesson. We have wonderful friends and family around us who keep our world spinning.
Baltimore
I am heading to Baltimore next week. Once again, ask and you shall receive. Friends and family are making it possible for me to attend the Cure JM Conference in Baltimore. I am excited. A little nervous to leave Gary but he is in good hands. Running the full marathon on Saturday with a few of my Cure JM Buddies. I am honored to be running with my Blue Angel, Kelly. She was there when I crossed the finish line in Austin in 2010. It is going to be a great time. The foundation is working hard to meet our fundraising goal. I have received some pretty fantastic donations! Thank you to all. Donation Button over to the side bar>>>
Friday, September 21, 2012
Enough
I think I am officially burnt out. I am burnt out on all of it. Funny thing is, this is something you can't take a vacation from. I feel so drained but want to scream. I am so glad to me done with monthly infusions until next month. We are still heading back once a week for methopred infusions.
Wednesday we had our clinic visit and admission for infusion. We were just there last week and the week before. And the week before that. So little to no changes to report except for one. Limping.
F1
Our main rheumatologist came in but it was fast and brief. She said it was because something was tight. Could be. But confuses me the most is last time this happened, or when it happens, it has been labeled hip weakness. So you can see why it that can be a bit tormenting. It torments me because if I think it is weakness then what am I suppose to do about it? Ok fine. Something is tight. He will be getting back to physical therapy twice a week then. He obviously can't go without it. We stopped it because of school and infusions and appointments. It was hard to fit it in. Our physical therapist agreed that we should let him get use to school. But with the elbow, extended stay at the hospital, coming back week after week he, he hasn't even had a chance to do that.
F2
On Friday the rheumatologist called and said they wanted to start him on bactrum. I was in the car driving to the hospital for a dental check. I heard her say 4 times a day. I asked her to call it in to the pharmacy so I could pick it up after is dentist appointment. We would have had to wait 2 hours for it. I have spent so much time there lately I was not up for it. I knew I had some bactrum from something awhile back. I did! So Monday and Tuesday I put it on his elbow wounds 4 times a day. I stopped by pharmacy to pick up the fresh tube on our way to being admitted which was on the same floor. As the pharmacist brought the prescription from the back I gasped. I asked her what is that?! I asked if she had the right patient. It was an antibiotic. Apparently they wanted him not on a cream but an oral antibiotic. An anti viralish sort of medication. With the extreme immune suppression he is on, a safeguard of sorts. Ummm. Oooppsss?
F3
So why the F's. F sounds for frustration. I truly feel sick from the amount of frustration I feel. Whether I caused it or the hospital or whatever. This admission for cytoxan, and IVIG, went. In clinic it was just basically an overview. What came from it was this plan: If he is doing well, everything stays quiet, and we are liking what we see, then we push forward with continuing cytoxan and IVIG. The first move we make is to slowly take away the weekly steroid infusions. Go from there. IF he doesn't do well, continues with signs of disease activity like muscle weakness, more calcinosis, rash activity, then we will write down that we gave cytoxan a good try and switch up treatment. The treatment they want to give him is Orencia. Orencia targets calcium process as I under stood it. Ok. It's a plan.
F4
The infusion itself did not go well. Well, from the over all health of him feeling his typical it did but a very curious thing happened. Back on June 19th is when we found out about our buddy Mason Smedley. It was that very room I sat in complete grief and anguish, mourning. That night a mistake was made. I had fallen asleep because of pure exhaustion. I did not over see every medication. The nurse who administered the IVIG infusion did it at full rate. Why is this bad. Gary has had reactions and even has been labeled "allergic" to certain brands of IVIG. So to be very careful we always run the infusion at half the rate. It works very well. Minimizes side effects like headaches, nausea, tummy pain, and the over all ill feeling. It has worked great.
We were put in the same room this time as well. The Cure JM Foundation was in contest on facebook for win grant money. I was following it closely. So after getting Gary's port accessed (which went amazingly well) I took a minute to check in and see how we were doing. The Smedley Family gave the foundation a precious gift. They posted a very private photo of Mason on his final day here on earth, and asked everyone please vote. I cried. It felt so weird to be in the same room, the same day of the month (19th), and looking at those pictures. What do you suppose happened again? It happened AGAIN. I fell asleep. I did wake up like 5 times that night to help him go to the bathroom so my body was aching for sleep. Finally around 4am I slept. I was in and out of it but officially up at 8am for rounds. Talked to the doctors, then settle back in the finish the rest of the day. Suddenly I heard the nurse say he didn't need vitals done anymore to a cna because his infusion was done. My heart flopped. "What infusion is done?". She was aloof and seemed too act clueless. "Oh, um, the IVIG." She said with a cheer and tried to be confident. I quickly shot her confidence full of holes. "What time was it started??". "5am". To my horror I looked up and saw it was only 9am. The IVIG at half rate to minimize the side effects and protect him against allergic reactions was suppose to run over 8 to 10 hours. I fired question after question. Her only answer was, "I don't know, and I wasn't told". I began to cry in frustration. "I can't believe you guys did this again." I backed off and followed it with, "I am sorry, I know you are not responsible for this." Later however, I thought she was. When she came on shift she should have caught the error because she started at 7am. The IVIG was running at the rate under her watch. I pulled the blanket back, and under neath it was my ghostly white chubby little five year old, sweaty, but sleeping. Nothing could be done. I felt bad for the nurse. I felt bad for me that I let if happen. Most of all, I felt so bad for him. He woke up about 15 minutes later. Voice groggy, needing to pee. Our neighbor's family came to visit, so the happy sound of family reuniting turned into what sounded like a cocktail party. I so truly wished he could have just kept sleeping. Gary refused breakfast. He intermittently kept gagging has if he the nothing that was in his stomach, was about to come up. The resident doctor came in, sat down to apologize. At that point I didn't want to talk about it. I didn't want to discuss it anymore. It was just has much my fault as it was there's. But of course, YAP YAP YAP. My favorite was, "good thing he tolerated it." Go away from me. I had them run zofran through his IV which helped a lot. It perked him up a little.
F5
So they were ready to discharge us. I told them no. We had an appointment at 3pm on the other side of the hospital. It was purposely planned that way. The appointment was with plastic surgery to look at his elbow. We sat there all day. He slept for a couple hours as much as he could. That particular room, because of its location (in front of elevators, nurse station where everyones call light go off) sound more like a carnival then a hospital. When it was time to head back over to clinic for the plastic surgery appointment, he could barely walk. His limp was pretty bad and he was so very very red. His arms were red. His legs were red. His little face was red. He was quiet. I had my hands full of all of our stuff, so I could not carry him. I asked if he wanted me to get him a wheel chair, he said yes. I paged our nurse. She said sure. I watched her step into the hall, look up the hall, down the hall, then say, "oh I don't see one". I shook my head and said, "baby you are just going to have to walk." I told him I would sit and take breaks if he needed. The nurse saw him take a step and wince and get woosy. She got on her phone and said wait I have someone looking!!! I said, "nevermind". Done. We made it. The more he walked, the more he once again perked up. At clinic we checked in right on time. Gary layed in the waiting room. 45 minutes later they finally came and got us. I was so close to leaving. I could not miss this appointment though. OH thats right. I could have! She did NOTHING. She didn't even take off the bandage. Thank you. Thank you very much for having us wait which put us in rush hour traffic. It ended up taking us two and half hours to get home. They just want the hole to close on its own.
I am tired, and just so burnt out. I need to find my reset switch. I only feel worse today. But you know what the good part is? This isn't about me. It is about my son. This morning he woke up cranky but more or less good considering.
Wednesday we had our clinic visit and admission for infusion. We were just there last week and the week before. And the week before that. So little to no changes to report except for one. Limping.
F1
Our main rheumatologist came in but it was fast and brief. She said it was because something was tight. Could be. But confuses me the most is last time this happened, or when it happens, it has been labeled hip weakness. So you can see why it that can be a bit tormenting. It torments me because if I think it is weakness then what am I suppose to do about it? Ok fine. Something is tight. He will be getting back to physical therapy twice a week then. He obviously can't go without it. We stopped it because of school and infusions and appointments. It was hard to fit it in. Our physical therapist agreed that we should let him get use to school. But with the elbow, extended stay at the hospital, coming back week after week he, he hasn't even had a chance to do that.
F2
On Friday the rheumatologist called and said they wanted to start him on bactrum. I was in the car driving to the hospital for a dental check. I heard her say 4 times a day. I asked her to call it in to the pharmacy so I could pick it up after is dentist appointment. We would have had to wait 2 hours for it. I have spent so much time there lately I was not up for it. I knew I had some bactrum from something awhile back. I did! So Monday and Tuesday I put it on his elbow wounds 4 times a day. I stopped by pharmacy to pick up the fresh tube on our way to being admitted which was on the same floor. As the pharmacist brought the prescription from the back I gasped. I asked her what is that?! I asked if she had the right patient. It was an antibiotic. Apparently they wanted him not on a cream but an oral antibiotic. An anti viralish sort of medication. With the extreme immune suppression he is on, a safeguard of sorts. Ummm. Oooppsss?
F3
So why the F's. F sounds for frustration. I truly feel sick from the amount of frustration I feel. Whether I caused it or the hospital or whatever. This admission for cytoxan, and IVIG, went. In clinic it was just basically an overview. What came from it was this plan: If he is doing well, everything stays quiet, and we are liking what we see, then we push forward with continuing cytoxan and IVIG. The first move we make is to slowly take away the weekly steroid infusions. Go from there. IF he doesn't do well, continues with signs of disease activity like muscle weakness, more calcinosis, rash activity, then we will write down that we gave cytoxan a good try and switch up treatment. The treatment they want to give him is Orencia. Orencia targets calcium process as I under stood it. Ok. It's a plan.
F4
The infusion itself did not go well. Well, from the over all health of him feeling his typical it did but a very curious thing happened. Back on June 19th is when we found out about our buddy Mason Smedley. It was that very room I sat in complete grief and anguish, mourning. That night a mistake was made. I had fallen asleep because of pure exhaustion. I did not over see every medication. The nurse who administered the IVIG infusion did it at full rate. Why is this bad. Gary has had reactions and even has been labeled "allergic" to certain brands of IVIG. So to be very careful we always run the infusion at half the rate. It works very well. Minimizes side effects like headaches, nausea, tummy pain, and the over all ill feeling. It has worked great.
We were put in the same room this time as well. The Cure JM Foundation was in contest on facebook for win grant money. I was following it closely. So after getting Gary's port accessed (which went amazingly well) I took a minute to check in and see how we were doing. The Smedley Family gave the foundation a precious gift. They posted a very private photo of Mason on his final day here on earth, and asked everyone please vote. I cried. It felt so weird to be in the same room, the same day of the month (19th), and looking at those pictures. What do you suppose happened again? It happened AGAIN. I fell asleep. I did wake up like 5 times that night to help him go to the bathroom so my body was aching for sleep. Finally around 4am I slept. I was in and out of it but officially up at 8am for rounds. Talked to the doctors, then settle back in the finish the rest of the day. Suddenly I heard the nurse say he didn't need vitals done anymore to a cna because his infusion was done. My heart flopped. "What infusion is done?". She was aloof and seemed too act clueless. "Oh, um, the IVIG." She said with a cheer and tried to be confident. I quickly shot her confidence full of holes. "What time was it started??". "5am". To my horror I looked up and saw it was only 9am. The IVIG at half rate to minimize the side effects and protect him against allergic reactions was suppose to run over 8 to 10 hours. I fired question after question. Her only answer was, "I don't know, and I wasn't told". I began to cry in frustration. "I can't believe you guys did this again." I backed off and followed it with, "I am sorry, I know you are not responsible for this." Later however, I thought she was. When she came on shift she should have caught the error because she started at 7am. The IVIG was running at the rate under her watch. I pulled the blanket back, and under neath it was my ghostly white chubby little five year old, sweaty, but sleeping. Nothing could be done. I felt bad for the nurse. I felt bad for me that I let if happen. Most of all, I felt so bad for him. He woke up about 15 minutes later. Voice groggy, needing to pee. Our neighbor's family came to visit, so the happy sound of family reuniting turned into what sounded like a cocktail party. I so truly wished he could have just kept sleeping. Gary refused breakfast. He intermittently kept gagging has if he the nothing that was in his stomach, was about to come up. The resident doctor came in, sat down to apologize. At that point I didn't want to talk about it. I didn't want to discuss it anymore. It was just has much my fault as it was there's. But of course, YAP YAP YAP. My favorite was, "good thing he tolerated it." Go away from me. I had them run zofran through his IV which helped a lot. It perked him up a little.
F5
So they were ready to discharge us. I told them no. We had an appointment at 3pm on the other side of the hospital. It was purposely planned that way. The appointment was with plastic surgery to look at his elbow. We sat there all day. He slept for a couple hours as much as he could. That particular room, because of its location (in front of elevators, nurse station where everyones call light go off) sound more like a carnival then a hospital. When it was time to head back over to clinic for the plastic surgery appointment, he could barely walk. His limp was pretty bad and he was so very very red. His arms were red. His legs were red. His little face was red. He was quiet. I had my hands full of all of our stuff, so I could not carry him. I asked if he wanted me to get him a wheel chair, he said yes. I paged our nurse. She said sure. I watched her step into the hall, look up the hall, down the hall, then say, "oh I don't see one". I shook my head and said, "baby you are just going to have to walk." I told him I would sit and take breaks if he needed. The nurse saw him take a step and wince and get woosy. She got on her phone and said wait I have someone looking!!! I said, "nevermind". Done. We made it. The more he walked, the more he once again perked up. At clinic we checked in right on time. Gary layed in the waiting room. 45 minutes later they finally came and got us. I was so close to leaving. I could not miss this appointment though. OH thats right. I could have! She did NOTHING. She didn't even take off the bandage. Thank you. Thank you very much for having us wait which put us in rush hour traffic. It ended up taking us two and half hours to get home. They just want the hole to close on its own.
I am tired, and just so burnt out. I need to find my reset switch. I only feel worse today. But you know what the good part is? This isn't about me. It is about my son. This morning he woke up cranky but more or less good considering.
Saturday, September 15, 2012
Light and Dark
Elbow. Doing. I feel like I am doing one of those poems on stage back in the early 70's, when the whole beatnik groups exsisted.
Confession. So after the whole elbow thing, I think I may have slipped into a little weensy teensy depression. I have no idea why. Well, I do. And I don't. So many good bad things happening in my life. Blessings and troubles can overwhelm. Drags me down a steep ledge that leads to a ravine. I am all about climbing out.
I haven't recovered from the week in the hospital. I don't know what I wish for but, I know what to pray for. I pray for continued protection over not just Gary but all my children.
I feel like I struggle with anger and happiness. I really am a blessed, lucky woman. My family is amazing. The people that surround me are so wonderful. But yet, why, when sound goes away, and the worlds fade, I become so emotional, and I cry. I know why. I know, I can't control it. It is like the great sadness. It effects me when I run. Knocks me around. I can't even imagine where or how I would be without my parents, my sisters**, my brother, and the Cure JM Moms.
Enough of the MUSH and oh pity me stuff.
Gary's elbow is healing? I think. Never done this before. We were in Wednesday for Rituxan. We were given our own room which was so wonerful. LOVE. Makes things so much better. So much smoother. Not much new. Just workin the rough sea.
Confession. So after the whole elbow thing, I think I may have slipped into a little weensy teensy depression. I have no idea why. Well, I do. And I don't. So many good bad things happening in my life. Blessings and troubles can overwhelm. Drags me down a steep ledge that leads to a ravine. I am all about climbing out.
I haven't recovered from the week in the hospital. I don't know what I wish for but, I know what to pray for. I pray for continued protection over not just Gary but all my children.
I feel like I struggle with anger and happiness. I really am a blessed, lucky woman. My family is amazing. The people that surround me are so wonderful. But yet, why, when sound goes away, and the worlds fade, I become so emotional, and I cry. I know why. I know, I can't control it. It is like the great sadness. It effects me when I run. Knocks me around. I can't even imagine where or how I would be without my parents, my sisters**, my brother, and the Cure JM Moms.
Enough of the MUSH and oh pity me stuff.
Gary's elbow is healing? I think. Never done this before. We were in Wednesday for Rituxan. We were given our own room which was so wonerful. LOVE. Makes things so much better. So much smoother. Not much new. Just workin the rough sea.
Monday, September 3, 2012
The Great Event
After our infusion of Rituxan was last week scheduled for the 28th. Unfortunately, the calcium deposits that were looming before weekend (Aug. 24) were done looming. The decided it was show time. Unable to bend his arm, Gary became increasingly uncomfortable. We called and got our appointment to be admitted a day early. We are were worried about infection but no fevers, or other signs of infection made everyone feel a bit better. We were admitted to get Ibprofen through his IV. I will spare you our experience with the IV team. It over with and done. I learned a lesson. Now I know. There are different sizes of needles they use to access ports. The too big ones are not for Gary. Just nevermind. PUNCH
By Tuesday morning things were looking better. The tordal seem to calm his arm down. We decided to pulse him with steroids twice. They felt with the calcium putting on the show it is, it was part of the flare he experience due to not pulsing him with the steroids the way we should have. So by Wednesday, we were ready to go home.
Thursday morning was Kindergarten orientation. OOftah. That was overwhelming. A little for him and a lot for me. So many kids. I waited until everyone left, and did it. I cried. Ugghhh. I didn't want to cry but I couldn't help it. I talked to her for what seemed like hours. I wanted her to know every detail. Everything possible to make her understand how serious this is. I showed her his port. I like her. It kind of helped that she was familiar with ports. Her little nephew has one. His official first day is tomorrow. No strapping on a back pack. No stepping on to a bus. No first day outfit. No first day pictures. Gary's first day will be spent in a hospital bed. To be honest, am alright with that. : ) I feel, protected.
The Great Event
After kindergarten orientation things took a turn. He began to hold his arm funny again. By the hour, his play was interupted by winces and holding his hand with the other. By night time, things got much worse. I am surprised we made it through the night but I thought maybe if we made it to the morning. His elbow/arm was so bad, I had to give him tylenol and oxycotin every 4 hours, if that. I had spoke to the rheumatologist earlier that day. Told them ok, what do you got that I can give him. At that point I had no idea just how far away I was going to let this get from me (referring to the pain, redness, and swelling). She called in naproxen and wanted him to start a medication they give gout patients. Naproxen first to make sure his tummy handle it. The two days later add in the new medication. We went to pick up the naproxen. It was in the evening, around 7pm. They informed us they didn't have it. So I was upset but thought I would just get up in the morning and drive to the hospital pharmacy to get it. Well, that didn't last. The night was horrible. He got little sleep. I tried so hard to stick to my plan but by 4am I knew naproxen was not going to cut it either. I had to get the kids off to school, then onto the ER.
I told them I cannot manage this at home. There is only so much bottles of medications I can give him for the pain. They completely agreed. One look and he said, "lets get xrays, and get you to your room." Just like that we were admitted. As soon as the tordal hit his system, it was straight snoring. Poor little guy. He was so exhausted. We were so for the help we needed to get him out of pain. His elbow looked horrible. He couldn't move it, breathe on it, nothing. They scheduled an MRI for 10. The whole infection thing is the one thing no one wanted to fool around with. So he was not allowed to eat. It wasn't as hard as it has been in the past to do that because he was on pain medication. But when he got hungry, it was annoying. Ten pm finally rolled around. They walked us down. There we sat for another two hours. I am so thankful to my sister and her husband. They were there with me every step of the way. Gary's father had proir engagements that a hospital stay did not warrant cancelling. The MRI people put him night night and sent me back to our room to wait for him. He didn't come back until 230am. Nerve racking but I was also having a hard time keeping my eyes open because I had not had much sleep the whole entire week. We are all tired and spent but very grateful, again, for the help.
The MRI showed no bone infection. No signs of abcess. Just cellitius in the layers of tissue. The muscle was a little inflammed but he does have dermatomyositis so.
THE FOLLOWING ARE PICTURES OF THE PROGRESSION OF CALCINOSIS. IT IS NOT FOR THE FAINT OF HEART. IT IS NOT TO TERRIBLE BUT ENOUGH TO PUT THIS COURTESY WARNING UP TO FINISH READING AND EXIT OR GIVE A GLANCE. Why put them up. Because I want other families who experience this to be able to have access to our experience. To learn from it, to help. I am not posting these to take advantage of my child or try and gross you out. If you are grossed out, well so is Gary. He nearly barfs when we change his dressing. So if you can't handle of picture, think if it was on your body. Oh that just sounds rude and bratty of me. My personality is a little alterted right now. I sort of apologize.
Official diagnosis: Progression of calcinosis, staff infection
By Tuesday morning things were looking better. The tordal seem to calm his arm down. We decided to pulse him with steroids twice. They felt with the calcium putting on the show it is, it was part of the flare he experience due to not pulsing him with the steroids the way we should have. So by Wednesday, we were ready to go home.
Thursday morning was Kindergarten orientation. OOftah. That was overwhelming. A little for him and a lot for me. So many kids. I waited until everyone left, and did it. I cried. Ugghhh. I didn't want to cry but I couldn't help it. I talked to her for what seemed like hours. I wanted her to know every detail. Everything possible to make her understand how serious this is. I showed her his port. I like her. It kind of helped that she was familiar with ports. Her little nephew has one. His official first day is tomorrow. No strapping on a back pack. No stepping on to a bus. No first day outfit. No first day pictures. Gary's first day will be spent in a hospital bed. To be honest, am alright with that. : ) I feel, protected.
The Great Event
After kindergarten orientation things took a turn. He began to hold his arm funny again. By the hour, his play was interupted by winces and holding his hand with the other. By night time, things got much worse. I am surprised we made it through the night but I thought maybe if we made it to the morning. His elbow/arm was so bad, I had to give him tylenol and oxycotin every 4 hours, if that. I had spoke to the rheumatologist earlier that day. Told them ok, what do you got that I can give him. At that point I had no idea just how far away I was going to let this get from me (referring to the pain, redness, and swelling). She called in naproxen and wanted him to start a medication they give gout patients. Naproxen first to make sure his tummy handle it. The two days later add in the new medication. We went to pick up the naproxen. It was in the evening, around 7pm. They informed us they didn't have it. So I was upset but thought I would just get up in the morning and drive to the hospital pharmacy to get it. Well, that didn't last. The night was horrible. He got little sleep. I tried so hard to stick to my plan but by 4am I knew naproxen was not going to cut it either. I had to get the kids off to school, then onto the ER.
I told them I cannot manage this at home. There is only so much bottles of medications I can give him for the pain. They completely agreed. One look and he said, "lets get xrays, and get you to your room." Just like that we were admitted. As soon as the tordal hit his system, it was straight snoring. Poor little guy. He was so exhausted. We were so for the help we needed to get him out of pain. His elbow looked horrible. He couldn't move it, breathe on it, nothing. They scheduled an MRI for 10. The whole infection thing is the one thing no one wanted to fool around with. So he was not allowed to eat. It wasn't as hard as it has been in the past to do that because he was on pain medication. But when he got hungry, it was annoying. Ten pm finally rolled around. They walked us down. There we sat for another two hours. I am so thankful to my sister and her husband. They were there with me every step of the way. Gary's father had proir engagements that a hospital stay did not warrant cancelling. The MRI people put him night night and sent me back to our room to wait for him. He didn't come back until 230am. Nerve racking but I was also having a hard time keeping my eyes open because I had not had much sleep the whole entire week. We are all tired and spent but very grateful, again, for the help.
The MRI showed no bone infection. No signs of abcess. Just cellitius in the layers of tissue. The muscle was a little inflammed but he does have dermatomyositis so.
THE FOLLOWING ARE PICTURES OF THE PROGRESSION OF CALCINOSIS. IT IS NOT FOR THE FAINT OF HEART. IT IS NOT TO TERRIBLE BUT ENOUGH TO PUT THIS COURTESY WARNING UP TO FINISH READING AND EXIT OR GIVE A GLANCE. Why put them up. Because I want other families who experience this to be able to have access to our experience. To learn from it, to help. I am not posting these to take advantage of my child or try and gross you out. If you are grossed out, well so is Gary. He nearly barfs when we change his dressing. So if you can't handle of picture, think if it was on your body. Oh that just sounds rude and bratty of me. My personality is a little alterted right now. I sort of apologize.
 |
| Started out with discomfort and redness. |
 |
| More discomfort, raised, unable to move arm. |
 |
| Calcium released. Here he was on morphine. |
 |
| With pain management, antibiotics due to a staff infection, he is feeling better. |
 |
| And now a hole. |
 |
| More calcium exiting. |
 |
| Holes left behind from the calcium exiting. Treating the wounds like a burn. |
Official diagnosis: Progression of calcinosis, staff infection
Friday, August 24, 2012
Aug. 21 Infusion: Cytoxan, Pamidronate, IVIG, Methopred
Well that wasn't what I expected.
It was decided last month that I would decide if Gary needed to come in between monthly infusions. Gary's muscles and everything looked good. So we kept on trucking. His strength and energy, tip top. Until about 1 week before we were due to come in. Even over the past couple days is when it really came on. No weakness, but heliotrope rash, capillary changes, and increase in the size of calcium deposits.
Calcium Deposits
Gary still has a ton of these. They really have a mind of their own. There are some that have gotten smaller. There are some that have increased. He has one in his bottom that has calcium slowing coming out. It doesn't bother him as far as pain still so that is good. One in particular that is bothering me just to look at is above his elbow. Last month they did xrays because the doctor who saw him wanted to see if there was any invading the joint or causing an deterioration of the joint. The xray didn't show that as far as they could tell. However, a month later it is still threatening. Just to look at the spot makes me cringe. It looks so solid and hot and red. There is one on the top of his shoulder that has increased in size as well. He does have one I found in his cheek (in his face). It hasn't changed. There is one on his belly that is bigger as well.
Capillaries
I keep an eye on them, oh, everyday. They looked pretty good all month. No changes that I could tell. The doctor asked me how I look at them (like with what). I told them with just my eye. She said nodded and said she felt they look worse than last month.
The clinic appointment went pretty much like last month. We were there for a long time discussing what to do next. Our main doctor is out of town right now and we be there next week.
The dilemma. What to do next. We have one more treatment in the series of cytoxan. He has been on it for seven months now.
The one question that they keep asking me, what do I think is working or has worked in the past. So, I have homework to do. I am going to sit down and right a review. A review of each medication he has been on since the May 9th, 2009. They keep asking me what I think has worked. I really don't know. But I will.
We are back on Tuesday for Rituxan. Just in time for Kindergarten. We are caught up on all immunizations that we can get caught up on. Emergency Medication Supply is ready. Classroom Medical Accommodations document, got it. Giant Bubble, check. This should be interesting.
Last night he stayed at Aunties. It is his oasis. This morning he woke up and is starting to protect his arm with the calcium deposit that is increasing. This is a new one for us. It surprises me that we haven't run into this trouble as of yet but just the same here it is. We suspected the calcium was going to start giving him trouble. Hopefully it won't it will resolve on its own? Weep.
It was decided last month that I would decide if Gary needed to come in between monthly infusions. Gary's muscles and everything looked good. So we kept on trucking. His strength and energy, tip top. Until about 1 week before we were due to come in. Even over the past couple days is when it really came on. No weakness, but heliotrope rash, capillary changes, and increase in the size of calcium deposits.
Calcium Deposits
Gary still has a ton of these. They really have a mind of their own. There are some that have gotten smaller. There are some that have increased. He has one in his bottom that has calcium slowing coming out. It doesn't bother him as far as pain still so that is good. One in particular that is bothering me just to look at is above his elbow. Last month they did xrays because the doctor who saw him wanted to see if there was any invading the joint or causing an deterioration of the joint. The xray didn't show that as far as they could tell. However, a month later it is still threatening. Just to look at the spot makes me cringe. It looks so solid and hot and red. There is one on the top of his shoulder that has increased in size as well. He does have one I found in his cheek (in his face). It hasn't changed. There is one on his belly that is bigger as well.
Capillaries
I keep an eye on them, oh, everyday. They looked pretty good all month. No changes that I could tell. The doctor asked me how I look at them (like with what). I told them with just my eye. She said nodded and said she felt they look worse than last month.
The clinic appointment went pretty much like last month. We were there for a long time discussing what to do next. Our main doctor is out of town right now and we be there next week.
The dilemma. What to do next. We have one more treatment in the series of cytoxan. He has been on it for seven months now.
The one question that they keep asking me, what do I think is working or has worked in the past. So, I have homework to do. I am going to sit down and right a review. A review of each medication he has been on since the May 9th, 2009. They keep asking me what I think has worked. I really don't know. But I will.
We are back on Tuesday for Rituxan. Just in time for Kindergarten. We are caught up on all immunizations that we can get caught up on. Emergency Medication Supply is ready. Classroom Medical Accommodations document, got it. Giant Bubble, check. This should be interesting.
Last night he stayed at Aunties. It is his oasis. This morning he woke up and is starting to protect his arm with the calcium deposit that is increasing. This is a new one for us. It surprises me that we haven't run into this trouble as of yet but just the same here it is. We suspected the calcium was going to start giving him trouble. Hopefully it won't it will resolve on its own? Weep.
Wednesday, August 1, 2012
Aug. It is AUGUST
I can't believe I haven't posted since July 6th!
Let's dive right in. All is well. So well. Gary is back, and back BIG. Muscles are not 100 but 92%. How I calculate that I have no idea. But stepping up stairs, gaining confidence that he never had. Between weekly pulses, and physical therapy, we are doing great. Our last infusion was July 23 It was originally scheduled for July 18. We had gone on a camping trip. My most amazing sister and her incredible husband drove their trailer up to a campground they have a membership too. Parked it for us to let us camp. We had planned for the week but took what we could get. Gary's infusion was mid week, so when planning it I thought , no biggie, we will just pop over to the hospital, do a quick overnight and be back. I often do that. I think you could safely say it is a fault of mine. The words are so much easier. I often do the same thing at the beginning of my long runs. "It's only 17 miles." The day came. The campground had a pool, hot tub, and putt putt golf. How could I look into those eyes and say we have to go. I called and asked to reschedule. They agreed. I am sure I messed schedules up. I am sure I irritated a few. But three years of this, and someone needed a much deserved PASS.
So that is what we did. I am so glad we did too. Our reservation did not go through the week. We ended up having to come home early because the camp ground was out of space.
Our infusion was Monday the 23rd. We went to clinic at 11am. We were there for nearly 2 hours. I just love our doctor. Well, she is the fellow on rotation but I think she is beyond amazing. She listens to every detail. Every view. So that is what took so long. She explained to me that the official THURSDAY meeting they talked about Gary for awhile. Gary only has two more cytoxan treatments in his series of seven. They talked about which direction to go in next. He can't stay on cytoxan forever. I want grand babies some day after all so lets no push it. Can't stay on IV steroids forever either. Or can we? I don't know. I love the talk of remission, which we didn't discuss because I feel we are a long way from hit. Steroids are his bandaid. While I will take it and rejoice in it, I still feel we have a journey to get there. I am grateful the road is bumpy. We took a xray to see if the calcium is entering his joints. It looks as if there is a donut shape around his the joint. No problems with movement. The xrays were inconclusive. It seemed the calcium was staying of the joint but they couldn't see the joint itself because there was so much calcium. I like what his deposits are doing right now. They have all reduced in size. He does have some trouble some calcium in his bottom. Right at the top of his crack. It is slowly seeping out. It itches at most but still. It does look bruised around some spots. My opinion is too keep the pamidronate infusions up monthly. I think the steroids have a lot to do with the reduction in inflammation, all over his body. All labs are clear. They did check for iron in his blood. It keeps coming back low. They did a binding iron test thing and it was ok so press on.
The conclusion of our long conversation was, well, I think she was just seeking my opinion. She wanted to know what I thought. Did I think we have ever truly gotten Gary's JDM under control. Turned off? Have we ever been in a place where we thought maybe just maybe we hit the pathway.
No. No we haven't. Muscles. Yes, we know that one. There is another however, another pathway that we have yet to block.
The latest is there is a whole new line up of medication. They are stirring away from TNF blockers. Hmmm. We shall see : )
No limp. Skin, Okish. Calcium, Goodish. Energy, over the top. Thank you steroids.
Let's dive right in. All is well. So well. Gary is back, and back BIG. Muscles are not 100 but 92%. How I calculate that I have no idea. But stepping up stairs, gaining confidence that he never had. Between weekly pulses, and physical therapy, we are doing great. Our last infusion was July 23 It was originally scheduled for July 18. We had gone on a camping trip. My most amazing sister and her incredible husband drove their trailer up to a campground they have a membership too. Parked it for us to let us camp. We had planned for the week but took what we could get. Gary's infusion was mid week, so when planning it I thought , no biggie, we will just pop over to the hospital, do a quick overnight and be back. I often do that. I think you could safely say it is a fault of mine. The words are so much easier. I often do the same thing at the beginning of my long runs. "It's only 17 miles." The day came. The campground had a pool, hot tub, and putt putt golf. How could I look into those eyes and say we have to go. I called and asked to reschedule. They agreed. I am sure I messed schedules up. I am sure I irritated a few. But three years of this, and someone needed a much deserved PASS.
So that is what we did. I am so glad we did too. Our reservation did not go through the week. We ended up having to come home early because the camp ground was out of space.
Our infusion was Monday the 23rd. We went to clinic at 11am. We were there for nearly 2 hours. I just love our doctor. Well, she is the fellow on rotation but I think she is beyond amazing. She listens to every detail. Every view. So that is what took so long. She explained to me that the official THURSDAY meeting they talked about Gary for awhile. Gary only has two more cytoxan treatments in his series of seven. They talked about which direction to go in next. He can't stay on cytoxan forever. I want grand babies some day after all so lets no push it. Can't stay on IV steroids forever either. Or can we? I don't know. I love the talk of remission, which we didn't discuss because I feel we are a long way from hit. Steroids are his bandaid. While I will take it and rejoice in it, I still feel we have a journey to get there. I am grateful the road is bumpy. We took a xray to see if the calcium is entering his joints. It looks as if there is a donut shape around his the joint. No problems with movement. The xrays were inconclusive. It seemed the calcium was staying of the joint but they couldn't see the joint itself because there was so much calcium. I like what his deposits are doing right now. They have all reduced in size. He does have some trouble some calcium in his bottom. Right at the top of his crack. It is slowly seeping out. It itches at most but still. It does look bruised around some spots. My opinion is too keep the pamidronate infusions up monthly. I think the steroids have a lot to do with the reduction in inflammation, all over his body. All labs are clear. They did check for iron in his blood. It keeps coming back low. They did a binding iron test thing and it was ok so press on.
The conclusion of our long conversation was, well, I think she was just seeking my opinion. She wanted to know what I thought. Did I think we have ever truly gotten Gary's JDM under control. Turned off? Have we ever been in a place where we thought maybe just maybe we hit the pathway.
No. No we haven't. Muscles. Yes, we know that one. There is another however, another pathway that we have yet to block.
The latest is there is a whole new line up of medication. They are stirring away from TNF blockers. Hmmm. We shall see : )
No limp. Skin, Okish. Calcium, Goodish. Energy, over the top. Thank you steroids.
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