Ethan ate his first solid food in over a month today. See, Halloween is good for something, eh? It was an old favorite, regular M&M's. Thanks, Jerin for sharing! He also ate a sucker too. Yes, he is feeling better.
One of the chemo medications Ethan is on during this phase of treatment is called Ara-C. This medication made Ethan very sick the last couple of weeks. But, thankfully, he gets a break from that for a couple weeks, then he's back on it...for a couple of weeksu. Since he's not on that, he's feeling tons better. He's been playing lots and lots with his trains (driving them off the couch again and again and laughing his head off and shouting "uh-oh!"), cars, books, puzzles, and anything else he can get his hands on.
Because he's been in the hospital for so long, the muscles in his legs have atrophied a bit, so it's hard for him to stand and crawl, let alone walk. So we're helping him to get up to speed with that while he's on his little Ara-C break and getting exercise carrying him all around the house. =) When we give him his antibiotics, it goes through his PICC line. Ethan is so cute and will hold out his little arm for us even though he doesn't like it.
Since he's been home, he's learned a few new words such as "frog", "horse", "Tootles" (from Mickey Mouse Clubhouse), "Pluto", "Duck" (for Donald Duck), "yes" and has taken to singing songs like "lalalala". He has also grown quite attached to the movie "Cars" and says "beep beep" thoughout much of the movie. But the best of all are the hugs we get from him. He is very loving - a trait we hope he'll keep. =)
Our superhero!
Our superhero!
Monday, October 31, 2011
Sunday, October 23, 2011
Home At Last!
Ethan's month long stint at the hospital ended last Tuesday, finally! We were very glad to have both Ethan and Jen home. =)
Ethan's counts were good enough to move him into the next phase of treatment: Consolidation. During this phase, he'll have different kinds of chemo treatment, one of which will make him really sick, namely, Ara C. Ethan still has an abcess on his liver. He's already suseptible to getting fevers from that, but Ara C has the potential to magnify that. Last Thursday, he did actually get a big fever and we took him to a clinic to get checked. He was also vomiting a lot Tuesday through Thursday. The doctor prescribed benedryl in addition to zophran to kill the nausea. Thankfully, that's helped a lot - hasn't thrown up since! =) In fact, Ethan has gotten his spunk back. He sat up on his own to play tonight. We haven't seen him do this for several weeks. He's laughed a lot and gotten his voice back in order - he talks a lot more now, even learned a few new words, like "Horse" and "Duck".
The kids are loving having him home and play with him a lot. He get really excited when they come over to play with him.
The hard part through all this is managing the house and staying on top of all of Ethan's medication. He has a feeding tube too, which adds to the challenge. With Jen being pregnant, she's not allowed to administer any of the chemo treatments; the home health care nurse has to do that when Merrill is at work. Ethan has to take his anti-nausea medicine every three hours - makes sleeping at night fun...
Besides all the extra challenges, we feel very blessed. So many have lended helping hands, offered up prayers, provided much needed service in many varieties, or shared comforting words. We are very grateful for all the help and support. This is definitely not easy, but the help we have received has made it much more bareable. We are also so very grateful for the Gospel of Jesus Christ which gives us strength and support in ways we cannot fathom. God does work miracles and does hear and answer prayers. He does provide comfort when at times there doesn't seem to be any. He finds a way to bless when all other paths seem to prevent those blessings from coming. He has a way to heal the broken heart to give courage to keep moving forward. He provides strength during those times when it seems like there is no energy left to move forward physically, mentally, or spiritually. We are eternally grateful for the Atonement. We are learning daily more about how that helps us grow closer to Christ. This trial has put into perspective the Plan of Salvation and how important mortality is to our eternal progression. Trials help us to become like our Father in Heaven. We cannot progress without learning; learning requires differentiating the good and the bad, the pleasant and the difficult and still making the right choices. Ethan in his own little way is an example to us of perserverence, faith, and patience. We cannot imagine being in his shoes, but the light we see in him gives us hope and helps us remember what is most important in life. We are grateful to have him home! =)
Ethan's counts were good enough to move him into the next phase of treatment: Consolidation. During this phase, he'll have different kinds of chemo treatment, one of which will make him really sick, namely, Ara C. Ethan still has an abcess on his liver. He's already suseptible to getting fevers from that, but Ara C has the potential to magnify that. Last Thursday, he did actually get a big fever and we took him to a clinic to get checked. He was also vomiting a lot Tuesday through Thursday. The doctor prescribed benedryl in addition to zophran to kill the nausea. Thankfully, that's helped a lot - hasn't thrown up since! =) In fact, Ethan has gotten his spunk back. He sat up on his own to play tonight. We haven't seen him do this for several weeks. He's laughed a lot and gotten his voice back in order - he talks a lot more now, even learned a few new words, like "Horse" and "Duck".
The kids are loving having him home and play with him a lot. He get really excited when they come over to play with him.
The hard part through all this is managing the house and staying on top of all of Ethan's medication. He has a feeding tube too, which adds to the challenge. With Jen being pregnant, she's not allowed to administer any of the chemo treatments; the home health care nurse has to do that when Merrill is at work. Ethan has to take his anti-nausea medicine every three hours - makes sleeping at night fun...
Besides all the extra challenges, we feel very blessed. So many have lended helping hands, offered up prayers, provided much needed service in many varieties, or shared comforting words. We are very grateful for all the help and support. This is definitely not easy, but the help we have received has made it much more bareable. We are also so very grateful for the Gospel of Jesus Christ which gives us strength and support in ways we cannot fathom. God does work miracles and does hear and answer prayers. He does provide comfort when at times there doesn't seem to be any. He finds a way to bless when all other paths seem to prevent those blessings from coming. He has a way to heal the broken heart to give courage to keep moving forward. He provides strength during those times when it seems like there is no energy left to move forward physically, mentally, or spiritually. We are eternally grateful for the Atonement. We are learning daily more about how that helps us grow closer to Christ. This trial has put into perspective the Plan of Salvation and how important mortality is to our eternal progression. Trials help us to become like our Father in Heaven. We cannot progress without learning; learning requires differentiating the good and the bad, the pleasant and the difficult and still making the right choices. Ethan in his own little way is an example to us of perserverence, faith, and patience. We cannot imagine being in his shoes, but the light we see in him gives us hope and helps us remember what is most important in life. We are grateful to have him home! =)
Wednesday, October 12, 2011
Good news:)
Yesterday we got the initial reusults from Ethan's bone marrow and lumbar puncture. The initial results were negative for any leukemia cells. We still have to wait for the final results to come back, which is a more thourough test. We are pleased that at least the initial test came back negative! If the final results are negative as well, he will be in reemission, and will be able to move on to the second phase, which is consolidation. We should get those results soon.
Ethan has also started physical therapy. Yesterday was the first day they came, and to put it mildly, he wasn't very cooperative. He has been feeling pretty lousy, and sitting on the floor and playing is not on his list of things he wants to do:) I think it is good for him to make sure he is moving his muscles, and I think physical therapy is good, but at the same time, I understand where he is coming from. If you think of when you aren't feeling well, and are nauseous, and have a fever, you really don't feel like playing:) Hopefully he can start to feel better soon, and it will be easier!
Another piece of good news is that his counts are coming up! As his counts improve, they are hoping that his abscess on his liver fills with fluids, and the they can drain it, which will take care of the fevers. Also as his counts come up, it should give him more energy and make him feel a little better!
We have also gone back to the feeding tube. He has had a bit of a rough time with that, but we are hoping that will also make him feel better. He has been sick to his stomach,and has thrown up the feeding tube a couple of times, and has also pulled the tube out a couple of times. Hopefully we can keep it in now.
That is the latest! We will keep you updated! Thanks again for all of your love and support!
Ethan has also started physical therapy. Yesterday was the first day they came, and to put it mildly, he wasn't very cooperative. He has been feeling pretty lousy, and sitting on the floor and playing is not on his list of things he wants to do:) I think it is good for him to make sure he is moving his muscles, and I think physical therapy is good, but at the same time, I understand where he is coming from. If you think of when you aren't feeling well, and are nauseous, and have a fever, you really don't feel like playing:) Hopefully he can start to feel better soon, and it will be easier!
Another piece of good news is that his counts are coming up! As his counts improve, they are hoping that his abscess on his liver fills with fluids, and the they can drain it, which will take care of the fevers. Also as his counts come up, it should give him more energy and make him feel a little better!
We have also gone back to the feeding tube. He has had a bit of a rough time with that, but we are hoping that will also make him feel better. He has been sick to his stomach,and has thrown up the feeding tube a couple of times, and has also pulled the tube out a couple of times. Hopefully we can keep it in now.
That is the latest! We will keep you updated! Thanks again for all of your love and support!
Saturday, October 8, 2011
New updates
While it hasn't been a long time since I posted last, a lot has happened! first of all, they think they have found the reason for the fevers. He has an abscess on his liver. The doctors went back and forth for a few days on if it really was an abscess or not, but the official pathology reports came back that it was indeed and abscess. The latest plan a was to wait until his counts improved, which should make the abscess fill with fluid, and then they can drain it which will improve the fevers and antibiotics can reach it better. As of today, his counts were still at zero. Not sure when they'll improve?
Yesterday he also got a feeding tube put in. After he pulled it out 2 times yesterday, they decided to see if we could get him to eat on his own. He needs 600 calories a day, but is having a hard time with that. We have tried brownies, milkshakes, pediasure, carnation instant breakfast, and nothing is working. If anyone has a great idea, please let me know!
Also yesterday he had a bone marrow and lumbar puncture. These test should come back negative for leukemia cells. If not, he can't move on to the next phase of his treatment. We should find out on Monday.
On the home front, Merrill started his new job on Thursday and loves it! He is so happy, and it is such a good thing for him. We are all so grateful for that! Merrill did get in an accident yesterday while he was driving across campus to get a key to his office. A girl didn't see him and turned into him. No one was hurt, and Merrill was so sweet, and felt bad for the girl (I have been there & know how she feels)! Also, our sprinklers broke at 5:30 this morning, so I got to haul water out of the window well in the rain in the wee hours of the morning! The kids were troopers, and all four helped put towels down & get cleaned up. They are the best!
Now, just as a warning, I tend to overanalyze things, so if you want to stop reading now, go ahead, I won't be offended! Just to start off, I grew up playing softball, and I LOVED softball! I played both slow and fast pitch all summer, and was on the high school team as well. I would go outside and practice for hours at a time by myself. I would throw up the ball and hit it, practice pitching at the fence, throw the ball at the house so I could field grounders, etc, etc, etc.
Last night before I was awoken with the sprinkler issues, I had a dream. I was at a family reunion, and we were going to play softball. We went to the field, and I was SO excited to play. My team was up to bat first. As I got up to bat, there were walls in front of me, and behind me. I was pushed up close to home plate, and as I tried to get a full swing, My bat hit the wall in front of me. No matter how hard I tried, I could not hit the ball, which left me very frustrated. I kept striking out because I couldn't get a good stance, and swing the right way. It was about this time that Jerin woke me up. After all had calmed down, we all went back to bed. As I lay there trying to go back to sleep, I thought of my dream, and it dawned on me that I should have bunted! Now while that wasn't the power hit I was looking for to get everyone home, It would have gotten me to first base, and I could have relied on someone else that the walls didn't have a hold on to hit me home! Now, while this is an odd thing to think about while life is falling apart, I think it was for a reason. This is so much like my situation, and probably like most of our lives on more occasions than we care to admit! Right now, I am helpless. I have things blocking my way that I am helpless to remove. No matter how hard I try, I end up hitting a wall, and striking out. If I stop and look at the situation, and do the little things to move forward, and at least get me on base, I can rely on my Heavenly Father, who is without walls, to swing big and hit me home. I can't win the game on my own, but if I do my part, Heavenly Father can make up for the rest! I am SO grateful for the knowledge of my Heavenly Father's love for my family. I know beyond a doubt that he will bat us home if we do everything in our power to just get on base!
While times are hard, not just for my family, but for everyone at one point or another, the knowledge of a bigger plan can help us see things a little clearer, and our burdens WILL be lightened! I know this to be true!
Yesterday he also got a feeding tube put in. After he pulled it out 2 times yesterday, they decided to see if we could get him to eat on his own. He needs 600 calories a day, but is having a hard time with that. We have tried brownies, milkshakes, pediasure, carnation instant breakfast, and nothing is working. If anyone has a great idea, please let me know!
Also yesterday he had a bone marrow and lumbar puncture. These test should come back negative for leukemia cells. If not, he can't move on to the next phase of his treatment. We should find out on Monday.
On the home front, Merrill started his new job on Thursday and loves it! He is so happy, and it is such a good thing for him. We are all so grateful for that! Merrill did get in an accident yesterday while he was driving across campus to get a key to his office. A girl didn't see him and turned into him. No one was hurt, and Merrill was so sweet, and felt bad for the girl (I have been there & know how she feels)! Also, our sprinklers broke at 5:30 this morning, so I got to haul water out of the window well in the rain in the wee hours of the morning! The kids were troopers, and all four helped put towels down & get cleaned up. They are the best!
Now, just as a warning, I tend to overanalyze things, so if you want to stop reading now, go ahead, I won't be offended! Just to start off, I grew up playing softball, and I LOVED softball! I played both slow and fast pitch all summer, and was on the high school team as well. I would go outside and practice for hours at a time by myself. I would throw up the ball and hit it, practice pitching at the fence, throw the ball at the house so I could field grounders, etc, etc, etc.
Last night before I was awoken with the sprinkler issues, I had a dream. I was at a family reunion, and we were going to play softball. We went to the field, and I was SO excited to play. My team was up to bat first. As I got up to bat, there were walls in front of me, and behind me. I was pushed up close to home plate, and as I tried to get a full swing, My bat hit the wall in front of me. No matter how hard I tried, I could not hit the ball, which left me very frustrated. I kept striking out because I couldn't get a good stance, and swing the right way. It was about this time that Jerin woke me up. After all had calmed down, we all went back to bed. As I lay there trying to go back to sleep, I thought of my dream, and it dawned on me that I should have bunted! Now while that wasn't the power hit I was looking for to get everyone home, It would have gotten me to first base, and I could have relied on someone else that the walls didn't have a hold on to hit me home! Now, while this is an odd thing to think about while life is falling apart, I think it was for a reason. This is so much like my situation, and probably like most of our lives on more occasions than we care to admit! Right now, I am helpless. I have things blocking my way that I am helpless to remove. No matter how hard I try, I end up hitting a wall, and striking out. If I stop and look at the situation, and do the little things to move forward, and at least get me on base, I can rely on my Heavenly Father, who is without walls, to swing big and hit me home. I can't win the game on my own, but if I do my part, Heavenly Father can make up for the rest! I am SO grateful for the knowledge of my Heavenly Father's love for my family. I know beyond a doubt that he will bat us home if we do everything in our power to just get on base!
While times are hard, not just for my family, but for everyone at one point or another, the knowledge of a bigger plan can help us see things a little clearer, and our burdens WILL be lightened! I know this to be true!
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