Trip had an appointment today to get his ears checked. The doctor said they look great… for Trip. They are in no way perfect, but he said from where we started they look great. That made us both so happy we had a dance party in the car on the way home! It gives me hope going into getting his scans since it should be a sign the disease isn’t affecting his ears right now.
Getting scans at Children’s is never easy – emotionally, physically and logistically. I’m sure most of you have read or heard my rants about giving him back to back scans instead of scheduling them both on the same day. After moving his PET scan once, we were expecting to have it tomorrow downtown and his MRI on Friday at Legacy. The hospital called today and said the scanner is down, so the PET will be pushed to sometime next week. We should still proceed with the MRI on Friday since Legacy seems to have their ducks in a row. At least he won’t have to have anesthesia two days in a row.
I’m enjoying this time off from chemo, but there is a voice in the back of my head that keeps chattering. Scans bring up hope, fear and every emotion in between. I want to know where we stand and of course I want good news, but there is that self-protection thing going on where I tell myself not to get my hopes up too high. Also, really good news will mean we go to a maintenance phase. I want that for Trip, for all of us, but last year the “maintenance phase” sucked us into hell with the news that the disease had spread. I’m a little worried about getting off chemo even though that’s what I want. It’s confusing and scary.
What I have to do right now is trust… trust the doctors know what they are doing, trust that putting the PET scan off a week and delaying the next treatment further isn’t a big deal, trust my own eyes and intuition to know that Trip feels good, trust that the universe is working for us to heal Trip. Trust can be hard for me. It means letting go and reminding myself that control is an illusion. Right now, in this moment, I will trust.
Wednesday, May 23, 2012
Thursday, May 17, 2012
Finding Strength
Trip has been feeling “great” after getting out of the hospital last week. We got home by 9:00 last Thursday night. We were able to have a wonderful Mother’s Day weekend at home and with friends. His counts were pretty good this week, too. He feels so “normal” that I can help but smile about that and feel good about how strong he is.
Our last day in the hospital, we met another little boy with LCH who is also on methotrexate. He has skin only involvement, which is the best-case scenario for LCH, but has been on chemo for about 5 years. Every time he stops chemo the disease comes back. I know this is the sick reality of this disease, but it still makes me angry. It’s always nice to connect with another family going through the same thing.
Monday, we said goodbye to sweet little Jenson. It was such a beautiful service to remember him. The stories of his cute personality produced laughter through tears. I could not control my emotions through the service and have yet to have a day when the sadness does not surprise me and take over. I recognize part of it as fear, but most of it is feeling pain for friends that had to bury their precious child. I still cannot reconcile the death of a child. It seems so unnecessary. Even though Jenson’s parents are grieving, they unselfishly asked me and Colson to rise during the service while a picture of Trip was on the screen. They were raising awareness of histiocytosis and attaching another family to the pain of this disease. They provided information on how to support histio research. What a positive example of focusing on others through immense grief. I wish I could ease their pain.
I’m trying to focus on the positive. We had a wonderful family dinner last night. Trip was happy and eating great. I found myself praying for more moments like that. It was such a feeling of love for my family. Today, I have been blessed by unexpected, encouraging words from a friend when I most needed them. Colson will celebrate his 40th birthday this weekend. Gaky and Pops are coming to visit this weekend. We got a surprise call today to let us know we will hear from Make a Wish Foundation soon. I explained it to Trip and he said he wants to go to Hawaii! He quickly changed it to Disney World because that’s where is friend Carter wants to go for his wish. There are so many things to be thankful for that can easily be clouded by fear and sadness. Counting my blessings, living in the moment and feeling the love surrounding us give me strength.
Our last day in the hospital, we met another little boy with LCH who is also on methotrexate. He has skin only involvement, which is the best-case scenario for LCH, but has been on chemo for about 5 years. Every time he stops chemo the disease comes back. I know this is the sick reality of this disease, but it still makes me angry. It’s always nice to connect with another family going through the same thing.
Monday, we said goodbye to sweet little Jenson. It was such a beautiful service to remember him. The stories of his cute personality produced laughter through tears. I could not control my emotions through the service and have yet to have a day when the sadness does not surprise me and take over. I recognize part of it as fear, but most of it is feeling pain for friends that had to bury their precious child. I still cannot reconcile the death of a child. It seems so unnecessary. Even though Jenson’s parents are grieving, they unselfishly asked me and Colson to rise during the service while a picture of Trip was on the screen. They were raising awareness of histiocytosis and attaching another family to the pain of this disease. They provided information on how to support histio research. What a positive example of focusing on others through immense grief. I wish I could ease their pain.
I’m trying to focus on the positive. We had a wonderful family dinner last night. Trip was happy and eating great. I found myself praying for more moments like that. It was such a feeling of love for my family. Today, I have been blessed by unexpected, encouraging words from a friend when I most needed them. Colson will celebrate his 40th birthday this weekend. Gaky and Pops are coming to visit this weekend. We got a surprise call today to let us know we will hear from Make a Wish Foundation soon. I explained it to Trip and he said he wants to go to Hawaii! He quickly changed it to Disney World because that’s where is friend Carter wants to go for his wish. There are so many things to be thankful for that can easily be clouded by fear and sadness. Counting my blessings, living in the moment and feeling the love surrounding us give me strength.
Thursday, May 10, 2012
From Expecting to Appreciating
Trip’s follow-up appointment on Tuesday led to him being admitted at Legacy to start chemo a couple of days earlier since he counts were good. This was under the urging of his oncologist and under much protest from his endocrinologist. Things have gone much more smoothly than downtown Children’s. He was accessed in clinic and didn’t even shed a tear! According to Trip, Nurse Jill knows exactly how to do it without hurting him. All I had to do was hold his shirt over his mouth (to avoid spitting on the access site) and Jill did the work. That’s a huge change from the typical four people who have to physically restrain him just to be accessed. It’s obvious we are both much more comfortable being in clinic at Legacy.
After he finishes this round, we wait for scans the week of the 20th to determine the next drug protocol. I’m working on my expectations lesson. It is hard. Honestly, I’m expecting Trip to clear methotrexate and be released from the hospital tonight. I’m expecting his scans to give us good news. I know better than to expect either one. I’m a planner and drive Colson crazy with my need to plan. It makes me feel secure. I don’t like surprises. I know it’s my way of trying to control everything. At this point I know very well I cannot control this disease. I was given great advice last week: change the expectations of tomorrow to appreciations of today. I have consciously worked on that this week when I catch myself projecting what will happen next. It has been a challenge but it has also helped me live in the moment.
Tuesday, Trip’s LCH warrior friend, Jenson, left this world and went to a pain-free place of peace. Although it was expected, the news still ripped out my heart. I was visibly upset and unable to control my emotions while in the hospital with Trip. He asked why I was crying and I told him about Jenson.
Trip stopped what he was doing and asked, “Did he go to heaven?”
I said through tears, “Yes, baby, he is in heaven.”
He looked at me with a huge smile and exclaimed, “That is so cool, Mom! He gets to be in heaven with all the angels! Don’t be sad.”
I explained that I was sad for his mommy and daddy and sister, but I’m so happy for Jenson. That precious little child deserves peace. This disease deserves to be punched in the face.
After he finishes this round, we wait for scans the week of the 20th to determine the next drug protocol. I’m working on my expectations lesson. It is hard. Honestly, I’m expecting Trip to clear methotrexate and be released from the hospital tonight. I’m expecting his scans to give us good news. I know better than to expect either one. I’m a planner and drive Colson crazy with my need to plan. It makes me feel secure. I don’t like surprises. I know it’s my way of trying to control everything. At this point I know very well I cannot control this disease. I was given great advice last week: change the expectations of tomorrow to appreciations of today. I have consciously worked on that this week when I catch myself projecting what will happen next. It has been a challenge but it has also helped me live in the moment.
Tuesday, Trip’s LCH warrior friend, Jenson, left this world and went to a pain-free place of peace. Although it was expected, the news still ripped out my heart. I was visibly upset and unable to control my emotions while in the hospital with Trip. He asked why I was crying and I told him about Jenson.
Trip stopped what he was doing and asked, “Did he go to heaven?”
I said through tears, “Yes, baby, he is in heaven.”
He looked at me with a huge smile and exclaimed, “That is so cool, Mom! He gets to be in heaven with all the angels! Don’t be sad.”
I explained that I was sad for his mommy and daddy and sister, but I’m so happy for Jenson. That precious little child deserves peace. This disease deserves to be punched in the face.
Tuesday, May 1, 2012
Growth Spurt
The weekend turned into a bigger test of patience for me. I guess my teachers were giving me the opportunity to retake the test I failed on Thursday. Trip didn’t start chemo until 3:00 p.m. on Friday (for various reasons that I don’t have the energy to explain). He had to have a blood transfusion before we could leave on Sunday, so we didn’t get home until 6:30 Sunday night. We were all thankful to be home. He says has mouth sores again, but I can’t see any. I tried to find comfort and peace in that our biggest problem of the weekend was being in the hospital and being consistently delayed. I know some parents that would give anything for that to be their only problem. I feel off-kilter and completely overwhelmed right now. This Daily OM was in my mailbox and makes sense to me right now on some level…
We can also benefit from times of constriction and difficult to help us grow and learn.
It can be very challenging to maintain a positive attitude and a measure of faith when you are in the midst of difficult times. This is partly because we tend to think that if the universe loves us we will experience that love in the form of positive circumstances. However, we are like children, and the universe is our wise mother who knows what our souls need to thrive better than we do. Just as a young child does not benefit from getting everything she wants, we also benefit from times of constriction and difficulty to help us grow and learn. If we keep this in mind, and continue to trust that we are loved even when things are hard, it helps us bear the difficult time with grace.
This period of time in history is full of difficulty for a lot of human beings, and you may feel less alone knowing you are not being singled out. There are extreme energy changes pulsing through the universe at every level and, of course, we are all part of the growing process and the growing pains. It helps if we remember that life is one phase after another and that this difficult time will inevitably give way to something new and different. When we feel overwhelmed we can comfort ourselves with the wise saying: This too shall pass.
At the same time, if you truly feel that nothing is going right for you, it’s never a bad idea to examine your life and see if there are some changes you can make to alleviate some of the difficulty. Gently and compassionately exploring the areas giving you the most trouble may reveal things you are holding onto and need to release: unprocessed emotions, unresolved transitions, or negative ways of looking at yourself or reality. As you take responsibility for the things you can change, you can more easily surrender to the things you can’t, remembering all the while that this phase will, without doubt, give way to another.
We can also benefit from times of constriction and difficult to help us grow and learn.
It can be very challenging to maintain a positive attitude and a measure of faith when you are in the midst of difficult times. This is partly because we tend to think that if the universe loves us we will experience that love in the form of positive circumstances. However, we are like children, and the universe is our wise mother who knows what our souls need to thrive better than we do. Just as a young child does not benefit from getting everything she wants, we also benefit from times of constriction and difficulty to help us grow and learn. If we keep this in mind, and continue to trust that we are loved even when things are hard, it helps us bear the difficult time with grace.
This period of time in history is full of difficulty for a lot of human beings, and you may feel less alone knowing you are not being singled out. There are extreme energy changes pulsing through the universe at every level and, of course, we are all part of the growing process and the growing pains. It helps if we remember that life is one phase after another and that this difficult time will inevitably give way to something new and different. When we feel overwhelmed we can comfort ourselves with the wise saying: This too shall pass.
At the same time, if you truly feel that nothing is going right for you, it’s never a bad idea to examine your life and see if there are some changes you can make to alleviate some of the difficulty. Gently and compassionately exploring the areas giving you the most trouble may reveal things you are holding onto and need to release: unprocessed emotions, unresolved transitions, or negative ways of looking at yourself or reality. As you take responsibility for the things you can change, you can more easily surrender to the things you can’t, remembering all the while that this phase will, without doubt, give way to another.
Thursday, April 26, 2012
Wearing Thin...
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.
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.
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.
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