So here we go again, entering Ethan's 18th relapse. I can hardly believe he and we have gone through this 18 times. You think I would be used to this by now, but the pain of watching my son suffer is something I will never get used to. Ethan has been spilling protein since August 18th as soon as we dropped his dose to 5mg every other day. Now that we stopped the prednisone his protein has gone up the highest level and he has started to gain a pound of fluid a day. I called his Nephrologist today and the decision was made for him to start back on prednisone, although there is a twist.
They want us to start him back on 10mg every day until Monday, and then I am to call them and let them know how he is doing. If he continues to spill or there is no change then he will have to go back up to the full dose. The reason for this change is that they finally have the bone density scan results. It shows that he has Osteopenia, which means he has low bone density, but not yet full blown Osteoporosis. So this means that they really want to limit how much prednisone he will receive because of it's effect on his bones. With those results, they have decided that we will have to come in and discuss adding another chemotherapy drug to the mix. I will probably find out Monday when that will be. As you can imagine this is a lot of information to digest and I think I am still in shock that this is indeed happening again. I want to be strong for my son but the thought of having to go on chemotherapy drugs for the 2nd time is breaking my heart. Please keep us all in your prayers as we continue to digest this new information and wisdom for the doctors to know what the best options are for Ethan.
Friday, September 6, 2013
Tuesday, August 20, 2013
Road Block
Well things are not going as we had hoped. Ethan started spilling protein within 2 days of his dose being dropped to 5mg. This is not good news because this means that he has once again become steroid dependent. I called his pediatrician and she said to keep going with the 5mg every other day dosing until his protein has reached the highest level for 3 days. Then I am to call Children's and see what they want to do. I am feeling very discouraged as School is starting in 2 weeks and I had hoped that Ethan would not have a relapse right at the beginning of School. I am also frustrated that Ethan's bone density scan results are still not available. Please pray that they will get the test results to Ethan's Nephrologist ASAP, as that will determine the next steps for treatment as well. We are at the beginning stages and so far Ethan is feeling pretty good, other than being more tired than normal. We did notice that he was experiencing more fatigue when we dropped his dose down to 10mg. He was just starting to sleep really well and now in all likelihood he will have to start all over again. That is one of the hard parts in dealing with Nephrotic Syndrome, the constant ups and downs. Never knowing what tomorrow will be like, it really can change in the blink of an eye. We would appreciate your prayers and I will keep you posted as we go along.
Thursday, August 15, 2013
Summer
It's been awhile since my last update, so here is what our Summer has been like. We had a fantastic time backpacking around Europe for 2 weeks in July. Our plan was to visit 5 Countries, London, Paris, Italy, Switzerland and Germany. There was a lot we wanted to see and do in a short amount of time. My biggest concern while we were away was keeping Ethan healthy. With Ethan being on a what his doctor's called a medium dose of Prednisone. He was considered to be immune suppressed and therefore at a much higher risk of getting sick than you or I would. We were in so many public places, buses, trains, attractions that were jam packed with people. I was praying that we all would stay healthy despite the thousands of people we were coming in contact with. When we travelled by bus or train, many times there was simply no seat available and you had no other choice but to stand and hold onto a pole among a crowd of other passengers. If you didn't hold on, you were going to fall over once the train started moving. I am so thankful and happy to report that NONE of us got sick during or after our travels, which is amazing to me considering all the people we came in contact with. Praise the Lord for travelling mercies!
I am also very thankful that Ethan did not have any protein and was in pretty good spirits and felt well enough to handle all the walking. Both the boys did a great job with packing up and travelling to a new place every 2 days. The only problem we did have started about 6 days into our trip. When Ethan's big toe started hurting and we realized he had an ingrown toenail, which eventually got infected. Thank goodness my Mom had packed polysporin and some band aids. We also tried to soak his toe in salt water, when we could, but the last few days in particular became very painful for Ethan to walk.
Today we went for a checkup to our local pediatrician and she was very happy with how Ethan is doing. He is now down to the last few weeks on prednisone. If all goes well, two more weeks and he will be off. I am feeling very nervous, anxious at this point because last time Ethan only managed 12 days off prednisone before relapsing. School starts on September 3rd and I don't want him to relapse right when School starts. I was mentioning to his doctor that as soon as we hit 10mg of prednisone, Ethan's ezcema and allergies started coming back. Prednisone suppresses these reactions especially at the higher doses. Both of these conditions can trigger the immune system which can lead to a relapse. Which is what happened last time.
I told her I was doing everything I could to prevent him from reacting, washing his bedding often, vacuuming and dusting his room, and so I asked what else I could do, when she said this to me... Laura, you can't DO anything to prevent a relapse, if it's going to happen it will happen regardless of what you do. Wow, now that was what I needed to hear, because at this point in the treatment I get very anxious as we wait to see what happens. In a disease I have no control over, I try to manage what I can, thinking if I can protect him from germs or if I cleaned my house even better than I have before, maybe just maybe he won't relapse. Hearing that there isn't anything I can to prevent this, was so reassuring. Only God knows what is going to happen next and I am glad that I don't know what the future holds because I know it would cause me to worry too much. So I am holding onto God's promises that he will be with us whatever comes next. It's a daily battle I fight, peace versus worry, God versus Me. So please keep Ethan in your prayers these next few weeks as he comes off prednisone. Pray that he will be able to have a great start to his Gr. 7 year and be able to be off prednisone for at least a few months!
I am also very thankful that Ethan did not have any protein and was in pretty good spirits and felt well enough to handle all the walking. Both the boys did a great job with packing up and travelling to a new place every 2 days. The only problem we did have started about 6 days into our trip. When Ethan's big toe started hurting and we realized he had an ingrown toenail, which eventually got infected. Thank goodness my Mom had packed polysporin and some band aids. We also tried to soak his toe in salt water, when we could, but the last few days in particular became very painful for Ethan to walk.
Today we went for a checkup to our local pediatrician and she was very happy with how Ethan is doing. He is now down to the last few weeks on prednisone. If all goes well, two more weeks and he will be off. I am feeling very nervous, anxious at this point because last time Ethan only managed 12 days off prednisone before relapsing. School starts on September 3rd and I don't want him to relapse right when School starts. I was mentioning to his doctor that as soon as we hit 10mg of prednisone, Ethan's ezcema and allergies started coming back. Prednisone suppresses these reactions especially at the higher doses. Both of these conditions can trigger the immune system which can lead to a relapse. Which is what happened last time.
I told her I was doing everything I could to prevent him from reacting, washing his bedding often, vacuuming and dusting his room, and so I asked what else I could do, when she said this to me... Laura, you can't DO anything to prevent a relapse, if it's going to happen it will happen regardless of what you do. Wow, now that was what I needed to hear, because at this point in the treatment I get very anxious as we wait to see what happens. In a disease I have no control over, I try to manage what I can, thinking if I can protect him from germs or if I cleaned my house even better than I have before, maybe just maybe he won't relapse. Hearing that there isn't anything I can to prevent this, was so reassuring. Only God knows what is going to happen next and I am glad that I don't know what the future holds because I know it would cause me to worry too much. So I am holding onto God's promises that he will be with us whatever comes next. It's a daily battle I fight, peace versus worry, God versus Me. So please keep Ethan in your prayers these next few weeks as he comes off prednisone. Pray that he will be able to have a great start to his Gr. 7 year and be able to be off prednisone for at least a few months!
Tuesday, July 9, 2013
Children's Appt
Ethan had another visit to Children's this morning, this time with his Nephrologist. I knew going into this appointment that they were considering adding a chemo drug to Ethan's regime. I made sure I talked with Ethan about this possibility before we went so that he wasn't blindsided when we saw the doctor. He surprised me and actually said he would like to go on it again, if it meant that he could get another few years off prednisone. Unfortunately it isn't that easy and going on chemo again has significant risks, and at this point they have decided to wait before they try him on anything else.
They are also waiting to find out the results from his bone density test that he had last week. This will also determine what medicines they will be able to use if he relapses again. Ethan's arm has officially healed, after 10 long weeks. We are so very happy that he seems to have full mobility and no pain. His arm is very skinny ( incredibly hairy) and weak as he lost a lot of muscle and strength. The doctor suggested he go swimming to build up strength.
On a positive note, since Ethan has been taking 1000mg of Calcium a day he has grown an inch and a half in 6 weeks. AND that is with him being on prednisone!!! Normally he doesn't grow at all while on the prednisone but only when he comes off. His Nephrologist was very happy with that and he took that to mean that the prednisone isn't affecting his bones if he is growing while on it. I have to say I don't agree with him, I think it has everything to do with his taking 1000mg of Calcium a day that is helping him grow. The steroids slow and suppress growth, but I suppose that they are hesitant to say it is the Calcium since they don't currently advise their patients to take it. Our local pediatrician spoke to a bone specialist and she is the one who suggested Ethan take the Calcium. I am SO glad we did. I probably should have started years ago, but I can't go back now....
So for now the plan is that we reduce Ethan's dose by 10mg every 2 weeks. He has about 6 weeks left and then we once again wait to see what his body will do.
They are also waiting to find out the results from his bone density test that he had last week. This will also determine what medicines they will be able to use if he relapses again. Ethan's arm has officially healed, after 10 long weeks. We are so very happy that he seems to have full mobility and no pain. His arm is very skinny ( incredibly hairy) and weak as he lost a lot of muscle and strength. The doctor suggested he go swimming to build up strength.
On a positive note, since Ethan has been taking 1000mg of Calcium a day he has grown an inch and a half in 6 weeks. AND that is with him being on prednisone!!! Normally he doesn't grow at all while on the prednisone but only when he comes off. His Nephrologist was very happy with that and he took that to mean that the prednisone isn't affecting his bones if he is growing while on it. I have to say I don't agree with him, I think it has everything to do with his taking 1000mg of Calcium a day that is helping him grow. The steroids slow and suppress growth, but I suppose that they are hesitant to say it is the Calcium since they don't currently advise their patients to take it. Our local pediatrician spoke to a bone specialist and she is the one who suggested Ethan take the Calcium. I am SO glad we did. I probably should have started years ago, but I can't go back now....
So for now the plan is that we reduce Ethan's dose by 10mg every 2 weeks. He has about 6 weeks left and then we once again wait to see what his body will do.
Tuesday, June 25, 2013
Summer
School officially finished and we all can breathe a sigh of relief that another year is over. Adam finished Gr. 8 and Ethan Gr. 6. I can't believe Adam will be going into Highschool next year. Time sure does go by so fast. It feels like just yesterday I was holding him in my arms.
The next few weeks we plan to rest, relax and enjoy doing well a whole lot of nothing!!! We do have a lot of doctor's appointments for Ethan coming up. He has X rays again for his arm, his bone scan at Children's as well as his Kidney check up. Ethan has not felt well enough to do much and with his arm he is limited in his activities. We recently dropped his dose to 40mg every other day, so I am hoping this will help Ethan feel better. He has been dealing with increased hunger, which has made it very hard to keep him satisfied with healthy options, especially on his limited sodium diet!
It was particularly challenging at the year end class parties. They had a lot of salty chips and foods he could not eat. Ethan asked me if he could have some chips and I said "No, he could not". At that point we were trying to get him to negative and cheating makes his protein and swelling go up. So he tried again and asks if he can have just one chip from each bowl!!! I again said "No, and I told him he had to be strong, that it wouldn't be forever, but he just can't have that stuff right now. The first thing he said to me when he got in the car that day was, "well I resisted"!!! I did buy him a Coke Slushy for a reward!!!
It makes me sad all the things he has to go through. Watching his personality change again has also been hard. Since I am the one who spends the most time with him, I tend to get the brunt of his mood swings. Some days are easier than others. Ethan has also been complaining of bone pain, which he describes as aching all over his body. I know this is a side effect of high doses of prednisone, but I will be mentioning this to his Neph just to make sure this isn't related to further weakening of his bones. I can't wait to get his bone scan done as it will also help them decide what treatments they will or won't add on to Ethan's current regime.
The next few weeks we plan to rest, relax and enjoy doing well a whole lot of nothing!!! We do have a lot of doctor's appointments for Ethan coming up. He has X rays again for his arm, his bone scan at Children's as well as his Kidney check up. Ethan has not felt well enough to do much and with his arm he is limited in his activities. We recently dropped his dose to 40mg every other day, so I am hoping this will help Ethan feel better. He has been dealing with increased hunger, which has made it very hard to keep him satisfied with healthy options, especially on his limited sodium diet!
It was particularly challenging at the year end class parties. They had a lot of salty chips and foods he could not eat. Ethan asked me if he could have some chips and I said "No, he could not". At that point we were trying to get him to negative and cheating makes his protein and swelling go up. So he tried again and asks if he can have just one chip from each bowl!!! I again said "No, and I told him he had to be strong, that it wouldn't be forever, but he just can't have that stuff right now. The first thing he said to me when he got in the car that day was, "well I resisted"!!! I did buy him a Coke Slushy for a reward!!!
It makes me sad all the things he has to go through. Watching his personality change again has also been hard. Since I am the one who spends the most time with him, I tend to get the brunt of his mood swings. Some days are easier than others. Ethan has also been complaining of bone pain, which he describes as aching all over his body. I know this is a side effect of high doses of prednisone, but I will be mentioning this to his Neph just to make sure this isn't related to further weakening of his bones. I can't wait to get his bone scan done as it will also help them decide what treatments they will or won't add on to Ethan's current regime.
Friday, June 14, 2013
Back on Prednisone
I have written and rewritten this post so many times today. I can't seem to get my mind to focus on what my heart wants to say. It has been a tough week, Ethan continues to spill protein which has led to him gaining 3.5 pounds of fluid in a very short time. He is feeling very ill as we wait for the prednisone to start working. His Nephrologist advised that we start him once again on 60mg of daily prednisone until he is negative for protein for 3 days. Then we can drop him to 40mg every other day.
They called me today with his latest lab test results. Once again things don't seem to be simple. They told me that Ethan's blood and urine tests show that he is spilling large amount of protein, which I already knew. But the confusing part is that his albumin level is normal. When one is swelling and losing that much protein the albumin level in the blood drops dramatically. So they are not sure what to make of that, considering that he gained another pound overnight, something is obviously going on. They want us to come in to see them in 2 weeks to evaluate him and to discuss possibly adding another chemotherapy drug. As they said he seems to be falling back into his pattern of being steroid dependent.
In the midst of this rather stressful week, Ethan was surprised by his classmates with a handmade get well card. I can't tell you how much that simple act made his day, he hasn't felt well enough to be at School for more than a few hours at a time this week. So when I came to pick him up at Lunch, he had such a smile on his face. I am continually blown away by the love and prayer support from Ethan's teachers and classmates.
Prayer Requests- Please pray that Ethan will respond to the prednsione quickly and that the side effects will be manageable.
They called me today with his latest lab test results. Once again things don't seem to be simple. They told me that Ethan's blood and urine tests show that he is spilling large amount of protein, which I already knew. But the confusing part is that his albumin level is normal. When one is swelling and losing that much protein the albumin level in the blood drops dramatically. So they are not sure what to make of that, considering that he gained another pound overnight, something is obviously going on. They want us to come in to see them in 2 weeks to evaluate him and to discuss possibly adding another chemotherapy drug. As they said he seems to be falling back into his pattern of being steroid dependent.
In the midst of this rather stressful week, Ethan was surprised by his classmates with a handmade get well card. I can't tell you how much that simple act made his day, he hasn't felt well enough to be at School for more than a few hours at a time this week. So when I came to pick him up at Lunch, he had such a smile on his face. I am continually blown away by the love and prayer support from Ethan's teachers and classmates.
Prayer Requests- Please pray that Ethan will respond to the prednsione quickly and that the side effects will be manageable.
Friday, June 7, 2013
Change in Plans
We have finally reached the 6 week mark with Ethan's arm, so this morning we went bright and early to get X rays and then to see the specialist. He told us 3 weeks ago, if everything looked good he would give Ethan a shorter cast. He figured he would need another 2 weeks with the shorter cast for a total of 8. Everything started out looking good, the X rays show that the bone is healing, But and there is a big BUT!!! There is still quite a visible break in the bone, he said it is taking much longer because it was such a bad break and then because of his prednisone use.
I did tell him that Ethan is once again spilling protein and that he will likely have to go back up to 60mg every day again soon. Ethan woke up this morning, with swollen eyes and the telltale signs of an imminent relapse. It is so disheartening to think that after only 12 days off prednisone we will most likely have to start this whole process over again. I hardly slept last night, worrying about today and the impact of another relapse. We are going to Europe for 2 weeks in July and we will be doing a lot of walking, touring 5 Countries in 2 weeks. The plan is if you can't carry it, don't pack it, so I am really hoping that Ethan will feel well enough to enjoy everything we see and do. WE really want to enjoy it too and if he isn't well, I find it hard to relax and enjoy myself.
But back to Ethan's arm... We were expecting that Ethan would only have this shorter cast on for another 2 weeks, but again things don't seem to be going according to plan. The doctor says that Ethan will need the shorter cast on for another 6-8 weeks, say what??? If he has to have it on that long, we decided to go with a waterproof cast a HOT pink one, (Ethan's choice). The old stinky cast comes off without a hitch, but it is what is under the cast that changes things once again.
We found that Ethan has some skin lesions that look to be very irritated, possibly infected. It could be eczema or just irritated from the cast. In any case, they are bad enough that he decided he didn't want to cover them up with a new cast. Especially since he will probably have to go back on a high dose of prednisone, which also slows down wounds healing.
So plan CDEFG is, a splinter cast, one that he can take off and one for showering. He told us that the splinter cast will not provide enough protection from another fall, or allow him to play any sports or use his arm like normal. He has to be very careful not to get bumped or fall, which concerns me as the Gr. 6 hallway is NUTS and super crowded and he gets bumped all the time. So that is where we are at right now.
I have to say how proud I am of Ethan, he handled the news like a champ, he didn't cry or complain. He just does what he always does, quietly absorbing it all. He is definitely not verbal about his feelings, if you can get even get him to talk about his feelings. Although his wife one day will want him to talk about his feelings, so trying to work on that! I am so blessed to have him and I think God knew that his Mother needed a child like him. Please pray for Ethan's arm and for his precious Kidney's and for all of us as we continue to journey along side of him.
I did tell him that Ethan is once again spilling protein and that he will likely have to go back up to 60mg every day again soon. Ethan woke up this morning, with swollen eyes and the telltale signs of an imminent relapse. It is so disheartening to think that after only 12 days off prednisone we will most likely have to start this whole process over again. I hardly slept last night, worrying about today and the impact of another relapse. We are going to Europe for 2 weeks in July and we will be doing a lot of walking, touring 5 Countries in 2 weeks. The plan is if you can't carry it, don't pack it, so I am really hoping that Ethan will feel well enough to enjoy everything we see and do. WE really want to enjoy it too and if he isn't well, I find it hard to relax and enjoy myself.
But back to Ethan's arm... We were expecting that Ethan would only have this shorter cast on for another 2 weeks, but again things don't seem to be going according to plan. The doctor says that Ethan will need the shorter cast on for another 6-8 weeks, say what??? If he has to have it on that long, we decided to go with a waterproof cast a HOT pink one, (Ethan's choice). The old stinky cast comes off without a hitch, but it is what is under the cast that changes things once again.
We found that Ethan has some skin lesions that look to be very irritated, possibly infected. It could be eczema or just irritated from the cast. In any case, they are bad enough that he decided he didn't want to cover them up with a new cast. Especially since he will probably have to go back on a high dose of prednisone, which also slows down wounds healing.
So plan CDEFG is, a splinter cast, one that he can take off and one for showering. He told us that the splinter cast will not provide enough protection from another fall, or allow him to play any sports or use his arm like normal. He has to be very careful not to get bumped or fall, which concerns me as the Gr. 6 hallway is NUTS and super crowded and he gets bumped all the time. So that is where we are at right now.
I have to say how proud I am of Ethan, he handled the news like a champ, he didn't cry or complain. He just does what he always does, quietly absorbing it all. He is definitely not verbal about his feelings, if you can get even get him to talk about his feelings. Although his wife one day will want him to talk about his feelings, so trying to work on that! I am so blessed to have him and I think God knew that his Mother needed a child like him. Please pray for Ethan's arm and for his precious Kidney's and for all of us as we continue to journey along side of him.
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