My patience that is… It’s 9:00 p.m. and Trip hasn’t even been accessed, but it doesn’t matter because he isn’t starting chemo until tomorrow morning around 9:00. It has been a day that has really tested my patience. I’m certain I’ll get an F on this test.
We were literally on the road to Children’s downtown three separate times today and two of those we were told to turn around and go home because they gave our bed away. After the second time, I called our endocrinologist and left a message with her nurse that I think it is ridiculous that Trip can’t get chemo at Legacy (for you out-of-towners, closer to home and less busy) when the endocrine team barely even sees him when he is in the hospital. Then I begged her to loosen up on her rule of making us go downtown “just in case” we need the endocrine team. Thinking back, I should have been as sweet as punch since I asked for a favor. Maybe she’ll like the word “ridiculous” when the message is passed on to her.
We were told to be at the hospital at 6:45 p.m., which is horrible timing given that it’s rush hour and the fact that Trip is breaking through at that point. I took the urinal in the car just in case, but he fell asleep half way down here since he never got a nap due to the constant come-down-go-home interruptions. Since this is really just a vacation night in the hospital I thought we could go to bed early, but I should know better. We are still waiting on his DDAVP shot that he should have had an hour ago and now they want to access him before bed. The charge nurse, who we love and did her best to get us a bed today, came in and told me that it now says in Trip’s chart that endocrine doesn’t have to consult. I think I need to go to sleep before this test of patience continues. What was that lesson about expectations a couple of weeks ago? I obviously need to practice that one a bit more.
Thursday, April 26, 2012
Tuesday, April 24, 2012
Smiling through Sadness
Trip’s pre-chemo appointment went okay today. We had to get in the Pentam booth. He was not happy about that but did great other than a few tears and questions about why I was being so mean. When he finished he was wheezing, so he had to have a second breathing treatment. He felt much better after that.
Trip’s hemoglobin is holding steady at 8 when it should be at least 11. For some reason that never recovers for him. He will probably need a blood transfusion while in the hospital this week. I’m not a fan.
The plan now is to have two more rounds of methotrexate and then have a PET scan and an MRI the week of May 20. Those results will determine the next steps.
We had a good visit with Trip’s friend Carter and my friend Tammy today at lunch. They are usually in clinic once a month when we are there and Trip looks forward to seeing them. Carter had lymphoma and has been in remission since the end of last year. Seeing how well he is doing makes my heart smile. Watching Trip play with him makes me so happy. Talking to Tammy helps me to feel “normal” and that makes me happy.
What doesn’t make me happy is news we received last week. Trip’s buddy Jenson who has been fighting LCH is losing his battle. He has been on chemo for three years and recently had a bone marrow transplant. He now has brain damage, bleeds and meningitis. I’m sad. I’m angry. I’m confused. I’m scared. This precious little boy has spent his entire three years of life in hospitals fighting for his life and in the end will not make it. Jenson’s mom and my friend, Kristin is handling this with more grace and peace than I could ever muster. I realize no one is guaranteed tomorrow with his/her children. Some of us have time to plan for the day that will happen and have to wake up, get up, and show up knowing that one day in the very near future our world will be missing a sweet, innocent child. I watch and hurt for their family and try to offer words of comfort all the while silently hoping and praying that will never be my child.
Wednesday, April 18, 2012
Energy
Trip was discharged from the hospital at 10:30 Saturday night and it couldn’t have come sooner for either one of us. They asked us if we wanted to wait until Sunday but didn’t encourage it because they would be short staffed and it would take longer to get through the discharge process Sunday morning. They didn’t have to push us to leave! We were in bed by midnight and thankful to wake up in our own home on Sunday morning.
Saturday was eventful before we left. Trip accidentally pulled out his line just enough where the needle was still suck in his skin but it wasn’t fully through his port so fluid was going underneath his skin instead of in his bloodstream. (That was a really wordy sentence – hope it makes sense.) He had to be accessed again, which is the part that is hardest on him. He was really brave and they were able to get him accessed again for fluids for only 6 more hours. The chemo finished the night before, so we were lucky that wasn’t a factor.
Since Trip has DI, we have to keep up with all his ins and outs while in the hospital, so that means someone holding a urinal and measuring every time he has to go to the bathroom. I was peed on for the first time since he was a baby. He thought it was hilarious! We both got a good laugh and of course he threatened to do it again. The next time he actually peed on himself, which really made him mad. It was his first lesson in karma. ☺
Trip says some funny and also profound things that make me smile. I say, “Geez Louise” often. Trip says, “Geez Little Wheeze.” Friday night Colson was ordering Trip a pizza to the room and Trip told him that he wanted cheese and “no Halloween guys” which we figured out means no jalapenos. I mentioned that I made a mistake. Trip told me that was okay because everyone makes mistakes and if we don’t make mistakes we can’t learn and grow. (This is the same kid that talks about cigarette smoking?? I’m pretty sure he just knows how to get my blood pressure up.)
Trip’s counts looked great yesterday with the exception of his hemoglobin, which is usually low. We have to watch for headaches, fatigue, just overall feeling crummy. There’s always the possibility of him needing a blood transfusion, but so far he has only had to have one since the beginning. The nurses always comment on his energy level and wonder how it’s possible to have so much energy with a low hemoglobin level, so we’re thankful he feels good regardless of the numbers.
Sunday Trip got to go to Main Event with his god-brother and had a blast. He stayed all afternoon and played harder than he has in a long time. Monday, we took a blanket outside and watched the blue sky, small clouds and let the wind blow. Trip kept saying what a beautiful day it was. Yesterday, he was able to go and stay at his gym class for the first time in months (he usually gets too tired to finish it) and we went to Colson’s softball game last night. We are focusing on the positive and making the most of every moment, even the small ones. Everyday he has a job to say, “I am healthy and well.” Today he said, “I am healthy and well and happy.” I love that kid.
Saturday was eventful before we left. Trip accidentally pulled out his line just enough where the needle was still suck in his skin but it wasn’t fully through his port so fluid was going underneath his skin instead of in his bloodstream. (That was a really wordy sentence – hope it makes sense.) He had to be accessed again, which is the part that is hardest on him. He was really brave and they were able to get him accessed again for fluids for only 6 more hours. The chemo finished the night before, so we were lucky that wasn’t a factor.
Since Trip has DI, we have to keep up with all his ins and outs while in the hospital, so that means someone holding a urinal and measuring every time he has to go to the bathroom. I was peed on for the first time since he was a baby. He thought it was hilarious! We both got a good laugh and of course he threatened to do it again. The next time he actually peed on himself, which really made him mad. It was his first lesson in karma. ☺
Trip says some funny and also profound things that make me smile. I say, “Geez Louise” often. Trip says, “Geez Little Wheeze.” Friday night Colson was ordering Trip a pizza to the room and Trip told him that he wanted cheese and “no Halloween guys” which we figured out means no jalapenos. I mentioned that I made a mistake. Trip told me that was okay because everyone makes mistakes and if we don’t make mistakes we can’t learn and grow. (This is the same kid that talks about cigarette smoking?? I’m pretty sure he just knows how to get my blood pressure up.)
Trip’s counts looked great yesterday with the exception of his hemoglobin, which is usually low. We have to watch for headaches, fatigue, just overall feeling crummy. There’s always the possibility of him needing a blood transfusion, but so far he has only had to have one since the beginning. The nurses always comment on his energy level and wonder how it’s possible to have so much energy with a low hemoglobin level, so we’re thankful he feels good regardless of the numbers.
Sunday Trip got to go to Main Event with his god-brother and had a blast. He stayed all afternoon and played harder than he has in a long time. Monday, we took a blanket outside and watched the blue sky, small clouds and let the wind blow. Trip kept saying what a beautiful day it was. Yesterday, he was able to go and stay at his gym class for the first time in months (he usually gets too tired to finish it) and we went to Colson’s softball game last night. We are focusing on the positive and making the most of every moment, even the small ones. Everyday he has a job to say, “I am healthy and well.” Today he said, “I am healthy and well and happy.” I love that kid.
Friday, April 13, 2012
Drama
I don’t get any pleasure out of drama. I vividly remember a few short years ago standing in my kitchen and feeling so thankful for such a peaceful, uneventful life. Trip was 1 and we were unaware of any possible disease. Nothing much ever happened to us and it was wonderful… smooth sailing. Not now. Seems like we are in the middle of a soap opera. I’ve been a General Hopsital fan for 25 years. That’s where I prefer my drama – daytime TV. Recently, the days of my life (no pun intended) could make for some good GH episodes sans the love triangles and the fact that most characters on that show are packing heat. Heck, we even live many days in the hospital. Where is Dr. Drake with our miracle? Where is Jason Morgan? (Okay, the latter question is only because it can’t hurt to have some nice eye candy while in the hospital. Don’t judge me. Besides, Colson doesn’t read this.)
We checked into the hospital yesterday by noon. Trip started chemo at 9:00 p.m. last night, which is ridiculous on so many levels. I don’t even have the energy to type the multiple reasons for the delay. I just know that delay will push us into staying a 3rd night because of the timing of his blood work and testing for methotrexate levels. Trip cried the minute he woke up on Thursday because he didn’t want to come to the hospital. He keeps asking when we can leave and why is this taking so long. We haven’t even been here 24 hours. He did do much better getting his port accessed this time. Gaky has been here helping me (thank the sweet heavens above). She is able to shift Trip’s focus from thinking bad thoughts to things like naming different types of birds or watching trains. I don’t have that talent. Plus, Trip informed us this week that all of this is my fault. The reason we go to the hospital, the reason he has to take yucky medicine, the reason he has to get two shots a day… it’s all my fault. I’m sure he needs a place to put the blame and I’m the easiest target since I’m typically the one “making” him do all of the things he doesn’t want to do. Guess I have to find comfort in the fact that I’m doing this for “his own good” even though I’m not very likeable at the moment.
Trip entertains a lot when we are at the hospital. Sometimes it’s out of frustration and the doctors laugh even though he’s calling them names like “Crocodile Ike” or telling the doctors they aren’t on the “good team”. Last night I was holding him in his bed while we were winding down for the night and the nurse was getting some labs and suddenly he said, “I think I’ll smoke a cigarette when I turn 18.” I said, “WHAAAT DID YOU JUST SAY???” The child always comments on other people smoking and how gross a cigarette on the ground is and now he knows what age he needs to be to buy them??? The nurse died laughing, which put Trip on stage again, but I sat there in shock. First of all, LCH and cigarettes don’t mix. There’s something called pulmonary LCH and since there is a high probability of this disease returning four times in his lifetime, cigarette smoking will only make the chances of beating it harder. Does the fact that I’m panicking to Trip make it all the more interesting to him? Should I ignore it now or start to explain it to him? (I didn’t have any answer last night, so I simply told him I would sit on him if he tried to smoke. Mother-of-the-year right here, people. Watch and learn.)
Then my mind jumps to his diabetes insipidus. What if he wants to go to a friend’s house for a sleepover and feels left out because all he wants do from 6-8 is drink and pee? Do I interrupt the sleepover at 8 to give him a shot? Or if he’s finally on pill form, will he remember to take it or even answer the phone if I call to remind him? Okay, I’m reeling it back in, but this is the stuff I’m contemplating when my child is only 4 and should be going to preschool and playing with his friends without a care in the world. Disease compounds the normal parenting problems. As Kristin, my friend and fellow histio-mom says, it’s time to change my expectations. The thoughts of how life would be and should be constantly have to be adjusted, so maybe it’s best not to have any expectations. She, unfortunately, has had to become an expert at not having any expectations.
Trip had two appointments on Tuesday and was seen separately by a tech and a doctor who hadn’t seen him in a couple of months. They both commented on how great he looks. They thought his skin and eyes were much better than the last time they saw him. That is wonderful and makes me feel great that we are possibly doing something right, but will we ever be able to stop? Will he be a kid that has to stay on chemo indefinitely just to keep this awful disease at bay? I’m stopping myself now before the wheels completely come off.
I’m sure you’ve noticed by now, the time spent in the hospital is free time for my mind to wonder illogically. There wasn’t much sleep last night but there never is in the hospital, so I write to get all of this junk out of my head. The good news is today is a new day, a fresh start, and I’m blessed to be here to experience it.
We checked into the hospital yesterday by noon. Trip started chemo at 9:00 p.m. last night, which is ridiculous on so many levels. I don’t even have the energy to type the multiple reasons for the delay. I just know that delay will push us into staying a 3rd night because of the timing of his blood work and testing for methotrexate levels. Trip cried the minute he woke up on Thursday because he didn’t want to come to the hospital. He keeps asking when we can leave and why is this taking so long. We haven’t even been here 24 hours. He did do much better getting his port accessed this time. Gaky has been here helping me (thank the sweet heavens above). She is able to shift Trip’s focus from thinking bad thoughts to things like naming different types of birds or watching trains. I don’t have that talent. Plus, Trip informed us this week that all of this is my fault. The reason we go to the hospital, the reason he has to take yucky medicine, the reason he has to get two shots a day… it’s all my fault. I’m sure he needs a place to put the blame and I’m the easiest target since I’m typically the one “making” him do all of the things he doesn’t want to do. Guess I have to find comfort in the fact that I’m doing this for “his own good” even though I’m not very likeable at the moment.
Trip entertains a lot when we are at the hospital. Sometimes it’s out of frustration and the doctors laugh even though he’s calling them names like “Crocodile Ike” or telling the doctors they aren’t on the “good team”. Last night I was holding him in his bed while we were winding down for the night and the nurse was getting some labs and suddenly he said, “I think I’ll smoke a cigarette when I turn 18.” I said, “WHAAAT DID YOU JUST SAY???” The child always comments on other people smoking and how gross a cigarette on the ground is and now he knows what age he needs to be to buy them??? The nurse died laughing, which put Trip on stage again, but I sat there in shock. First of all, LCH and cigarettes don’t mix. There’s something called pulmonary LCH and since there is a high probability of this disease returning four times in his lifetime, cigarette smoking will only make the chances of beating it harder. Does the fact that I’m panicking to Trip make it all the more interesting to him? Should I ignore it now or start to explain it to him? (I didn’t have any answer last night, so I simply told him I would sit on him if he tried to smoke. Mother-of-the-year right here, people. Watch and learn.)
Then my mind jumps to his diabetes insipidus. What if he wants to go to a friend’s house for a sleepover and feels left out because all he wants do from 6-8 is drink and pee? Do I interrupt the sleepover at 8 to give him a shot? Or if he’s finally on pill form, will he remember to take it or even answer the phone if I call to remind him? Okay, I’m reeling it back in, but this is the stuff I’m contemplating when my child is only 4 and should be going to preschool and playing with his friends without a care in the world. Disease compounds the normal parenting problems. As Kristin, my friend and fellow histio-mom says, it’s time to change my expectations. The thoughts of how life would be and should be constantly have to be adjusted, so maybe it’s best not to have any expectations. She, unfortunately, has had to become an expert at not having any expectations.
Trip had two appointments on Tuesday and was seen separately by a tech and a doctor who hadn’t seen him in a couple of months. They both commented on how great he looks. They thought his skin and eyes were much better than the last time they saw him. That is wonderful and makes me feel great that we are possibly doing something right, but will we ever be able to stop? Will he be a kid that has to stay on chemo indefinitely just to keep this awful disease at bay? I’m stopping myself now before the wheels completely come off.
I’m sure you’ve noticed by now, the time spent in the hospital is free time for my mind to wonder illogically. There wasn’t much sleep last night but there never is in the hospital, so I write to get all of this junk out of my head. The good news is today is a new day, a fresh start, and I’m blessed to be here to experience it.
Tuesday, April 3, 2012
Aiming for the Positive
Thursday we checked into the hospital for Trip’s 5th round of methotrexate. I’m not sure if he was feeding off my emotional week, but it was the hardest day for him emotionally speaking. Getting his port accessed was a nightmare, most likely related to the last access when the nurse poked him three times until she got it right. He screamed, fought and cried like he did in the beginning of all this mess. I was kicked and hit a few times, which are normally punishable offenses, but I felt like he was being punished enough. It was almost like a year of play therapy was out the window. There were three of us holding him down and he was fighting hard and asking why we are doing this to him and begging for us not to hurt him. The accessing process should take only a few minutes, but when there’s a fighter it takes a little longer but always feels like hours. After that the day went downhill. He did not want to be in the hospital and was begging to go home. I decided to explain a little further about his disease and told him that we need it to leave his body. “The medicine we get here will help us get the disease out of your body. We need to come to the hospital until the disease is gone, “ I tried to explain. While sobbing Trip screams, “Then we’re NEVER going to get out of here!!” I told him that I understand how he feels and that we WILL get this disease out of his body. “Sometimes, it helps to cry – just let it all out. It helps me feel better,” I told him in hopes of persuading him to not hold in what he was feeling. After that there were no words for a long time. I held him like a baby and rocked him for a long time while he cried and I choked back the tears. I watched him and remembered rocking him when he was a baby – a time before we even knew about the existence of this awful disease. How did we get here? Whose life is this?
He slept for a long time after crying. When he woke up he told me he was sorry and when the nurse came in he told her he was sorry too. He has such soft heart when he isn’t trying to protect himself. The night was a little better. He does not like it when the family isn’t “all together”. He was anxious to see his dad. Colson came Friday morning and I left to work and have a much-needed break. I was able to have my breakdown during the 30+ minute drive home.
I went back to the hospital Saturday morning and think the timing of being in the car was uncanny. There was a radio program on about staying positive when you feel anything but positive. I needed to hear it. It reminded me of the importance of finding things to be positive about when it is easier to focus on all that is wrong. I struggle with how to stay positive about the outcome of this battle but not get my hopes up at the same time (usually feelings that surround scans since that’s when the good/bad news comes). I haven’t been able to reconcile the two.
It’s easy for me to tell other people to stay positive when they are facing challenges because I truly believe everything will be okay for them. Why can’t I wholeheartedly believe that for my family? I think back to the beginning of all this when I was determined that Trip would have the initial chemo protocol and it would be the magic solution. A year ago, I thought things would be “normal” by this time. Here we are with a disease that has progressed since the beginning and now have what they consider to be “resistant” disease. It must be some sort of self-protection so I won’t be completely shocked if we do continue to get less than desirable news. It occurred to me that I do have a lot to be positive about regarding Trip and his disease.
I am the mother of an energetic, fun-loving little boy who has fight in him.
I am getting the best treatment for my son.
I am blessed beyond words to have the support of family and friends.
I am determined to remember the good surrounding us instead of what could go wrong. It will take work, but hopefully it will get easier in time. I know there will be hard days and I may or may not be ready for them, so I have the above list to refer to. ☺
There are so many people we know that are facing disease and fighting for their lives or the lives of their children. I guess it’s a sign of getting older?? My heart goes out to the parents who lost their little girl to cancer today; the 3 year old little boy relearning basic skills after a recent bmt; the teenager living out her high-school years fighting cancer and undergoing surgery after surgery; the mom and wife fighting for her life and scared for her family; the dad and husband gearing up for his fast-approaching bmt with so many unknowns; the granddad losing his battle with leukemia… too many to list.
If you’ve made it this far reading my ramblings today I commend you. ☺ I am simply trying to process these chaotic feelings. Hug your kids and spouse tightly and be thankful for the daily trials. Tell your parents and siblings how much you love and appreciate them. Make sure your friends and family know how much they mean to you. Don’t cloud the good in life with the daily minutia. (Not trying to be preachy to anyone but myself here.)
Thank you to all for standing by us on this journey. Even in cyberspace we know you are there and couldn’t be more thankful.
He slept for a long time after crying. When he woke up he told me he was sorry and when the nurse came in he told her he was sorry too. He has such soft heart when he isn’t trying to protect himself. The night was a little better. He does not like it when the family isn’t “all together”. He was anxious to see his dad. Colson came Friday morning and I left to work and have a much-needed break. I was able to have my breakdown during the 30+ minute drive home.
I went back to the hospital Saturday morning and think the timing of being in the car was uncanny. There was a radio program on about staying positive when you feel anything but positive. I needed to hear it. It reminded me of the importance of finding things to be positive about when it is easier to focus on all that is wrong. I struggle with how to stay positive about the outcome of this battle but not get my hopes up at the same time (usually feelings that surround scans since that’s when the good/bad news comes). I haven’t been able to reconcile the two.
It’s easy for me to tell other people to stay positive when they are facing challenges because I truly believe everything will be okay for them. Why can’t I wholeheartedly believe that for my family? I think back to the beginning of all this when I was determined that Trip would have the initial chemo protocol and it would be the magic solution. A year ago, I thought things would be “normal” by this time. Here we are with a disease that has progressed since the beginning and now have what they consider to be “resistant” disease. It must be some sort of self-protection so I won’t be completely shocked if we do continue to get less than desirable news. It occurred to me that I do have a lot to be positive about regarding Trip and his disease.
I am the mother of an energetic, fun-loving little boy who has fight in him.
I am getting the best treatment for my son.
I am blessed beyond words to have the support of family and friends.
I am determined to remember the good surrounding us instead of what could go wrong. It will take work, but hopefully it will get easier in time. I know there will be hard days and I may or may not be ready for them, so I have the above list to refer to. ☺
There are so many people we know that are facing disease and fighting for their lives or the lives of their children. I guess it’s a sign of getting older?? My heart goes out to the parents who lost their little girl to cancer today; the 3 year old little boy relearning basic skills after a recent bmt; the teenager living out her high-school years fighting cancer and undergoing surgery after surgery; the mom and wife fighting for her life and scared for her family; the dad and husband gearing up for his fast-approaching bmt with so many unknowns; the granddad losing his battle with leukemia… too many to list.
If you’ve made it this far reading my ramblings today I commend you. ☺ I am simply trying to process these chaotic feelings. Hug your kids and spouse tightly and be thankful for the daily trials. Tell your parents and siblings how much you love and appreciate them. Make sure your friends and family know how much they mean to you. Don’t cloud the good in life with the daily minutia. (Not trying to be preachy to anyone but myself here.)
Thank you to all for standing by us on this journey. Even in cyberspace we know you are there and couldn’t be more thankful.
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