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.
Tuesday, June 25, 2013
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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