We are blessed. We are so blessed. Tuesday my phone did not hold a charge after Trip & I left the doctor because we had so many friends & family call to ask about the scan results. I was on the phone and texting the majority of the night – so much so my phone kept dying. Thank you, my friends, for remembering and checking on the results. We are so blessed to have so many people care for us and think of Trip’s wellbeing.
The MRI showed nothing new or spreading, which is great news! We are so thankful for that. To get a stable report on the brain and orbital area gives me such relief. There are areas on his femur, arm and (possibly) jaw that appear to be active lesions and will need to be watched. He has had lesions on all areas in the past, so we know that these areas will show up on the skeletal survey for some time. When Trip was first diagnosed he had a huge bump on his skull that eventually turned into a huge hole in his skull. We have watched that lesion for years on the x-ray and now it is completely gone - a slow process but at least it is gone now. The thing with x-rays is they can show the damage to the bone(s) but it doesn’t necessarily mean there is active disease in those areas. A PET scan would be the only way to know for sure where the active disease is in his body, but since he has already been exposed to so much radiation we don’t think one is necessary at this time.
We are truly relieved and so thankful. While Colson & I would love to hear there are no lesions anywhere and nothing is showing up on any of the scans, we will take a “nothing new or spreading” report. We have so much to be thankful for and are so thrilled Trip can stay in school and enjoy his active social life. He will stay on the at-home chemo treatment for the foreseeable future, but we will gladly handle that. He finished a round this weekend and other than being tired and spitting methotrexate pills all over the bed at midnight, it went smoothly.
I hope everyone has a wonderful Christmas with loved ones. Let’s hug our little ones and big ones tightly and always show them how much they are loved.
Sunday, December 15, 2013
Thursday, December 5, 2013
Faith > Fear
Scanxiety is at an all-time high. Maybe it’s a combination of impending icy weather, added responsibilities ungraciously required of us, not being ready for Christmas, work, Colson’s business, and scans. Who knows… I’m anxious, and I’m blaming it all on the scans.
Let my faith be bigger than my fear.
We check in tomorrow at 9:00 a.m. Trip will have a skeletal survey then an MRI. (Cross fingers that we have no issues getting there with the expected bad weather and that Colson and I can both be there when Trip goes under.) The plan is to go over the results on Tuesday and figure out next steps.
Let my faith be bigger than my fear.
I constantly rely on the histio support group but have had to force myself off of the webpage. It is a great place to draw strength, but sometimes it gets to be more than I can process. There are more sad stories than good ones since we are all looking for comfort in each other and pleading for someone to make it all ok. Recently, I’ve read about too many cases of histio returning, and my heart breaks for those families while at the same time fear for my own family takes over.
Let my faith be bigger than my fear.
I have to stop every so often to remind myself to stay in the moment, to appreciate every single minute I get with my loved ones, to have an attitude of gratitude and to remind myself that I have handled many roller coaster rides over the last few years (y’all know I hate the literal and figurative roller coaster!). It is what it is. No matter how much worrying I do, it won’t change the outcome.
Let my faith be bigger than my fear.
I realize how whiny I sound, so I'm going to ask for a pass today. :) Prayers and calming thoughts are appreciated now and always. I’m working on myself but there are days I struggle, so I rely on those of you who sincerely support us with your prayers, words and actions to get me through.
Let my faith be bigger than my fear.
Let my faith be bigger than my fear.
We check in tomorrow at 9:00 a.m. Trip will have a skeletal survey then an MRI. (Cross fingers that we have no issues getting there with the expected bad weather and that Colson and I can both be there when Trip goes under.) The plan is to go over the results on Tuesday and figure out next steps.
Let my faith be bigger than my fear.
I constantly rely on the histio support group but have had to force myself off of the webpage. It is a great place to draw strength, but sometimes it gets to be more than I can process. There are more sad stories than good ones since we are all looking for comfort in each other and pleading for someone to make it all ok. Recently, I’ve read about too many cases of histio returning, and my heart breaks for those families while at the same time fear for my own family takes over.
Let my faith be bigger than my fear.
I have to stop every so often to remind myself to stay in the moment, to appreciate every single minute I get with my loved ones, to have an attitude of gratitude and to remind myself that I have handled many roller coaster rides over the last few years (y’all know I hate the literal and figurative roller coaster!). It is what it is. No matter how much worrying I do, it won’t change the outcome.
Let my faith be bigger than my fear.
I realize how whiny I sound, so I'm going to ask for a pass today. :) Prayers and calming thoughts are appreciated now and always. I’m working on myself but there are days I struggle, so I rely on those of you who sincerely support us with your prayers, words and actions to get me through.
Let my faith be bigger than my fear.
Tuesday, November 12, 2013
“When you have a bad day, a really bad day, try and treat the world better than it treated you.” ~Patrick Stump
This weekend we will start treatment six of at-home chemo. So far (knock on wood!) everything has gone smoothly and the treatment appears to be working on the outside. Trip has an MRI and skeletal survey scheduled for December 6 that we hope will prove the treatment has kept the inside free of LCH. Other than being tired, Trip has had almost no side effects.
Trip’s beloved doctor is no longer his doctor, so we are warming up to a new doctor. I’m sure in time I will have as much confidence in this new one as I did with the one who eventually found a treatment that worked for Trip. We miss Dr. Appel and will always be grateful to her.
Trip has learned so much in kindergarten. He is reading, writing, doing math… things he wasn’t able to do just a few short months ago. He still feels like school is a lot of work, but I believe he is thriving with new friends and opportunities around him.
The last few months have been a little challenging for our family. I’ve felt a little off kilter – like I’m in the trough of a wave while everyone else is on the crest. There hasn’t been one specific event but many, and there haven’t been so many that I can’t remember what my mom always says, “This too shall pass.” The one thing I know for sure is that hard times call for big support systems, and boy do I have a good one...
From my mom who drops everything to come be with me when I need her;
To my dad who calls to hear my voice and ask what he can do to help me;
To my husband who constantly reminds me I’m his world and how great our life is together;
To my special friend who reminds me that a fight with Trip over clothes is a blessing and how she would give anything to have a fight with her son;
To my thoughtful friends who still cook for my family even though we aren’t in the hospital anymore and my life can’t be any busier than theirs;
To my childhood friends who tell me they are proud of me and that my family is always in their thoughts and prayers even though I may only see them once a decade;
To my dearest friend and confidant who never judges my parenting mistakes, reminds me what is real in this world and lets me give her advice so I can feel normal;
To my sweet friend who comes over for coffee and does my hair so I can feel special;
To my thoughtful neighbors who always check on Trip and allow their children to be part of his support system;
To my group of friends who remind me that time away from home and child is a good thing and always leave me more refreshed;
To my caring friend who always knows when it is a chemo weekend and constantly checks on us (and lets me snuggle her baby to calm me down);
To my closest friend who keeps me smiling with texts, ecards, and funnies about her life going on miles away…
These people are the ones who make hard days easier to handle and tough times not feel so long. I’m so thankful for my support system and know that there have been days I couldn’t have made it without some or all of these people. My wish is that I can be to someone what they have been to me.
Trip’s beloved doctor is no longer his doctor, so we are warming up to a new doctor. I’m sure in time I will have as much confidence in this new one as I did with the one who eventually found a treatment that worked for Trip. We miss Dr. Appel and will always be grateful to her.
Trip has learned so much in kindergarten. He is reading, writing, doing math… things he wasn’t able to do just a few short months ago. He still feels like school is a lot of work, but I believe he is thriving with new friends and opportunities around him.
The last few months have been a little challenging for our family. I’ve felt a little off kilter – like I’m in the trough of a wave while everyone else is on the crest. There hasn’t been one specific event but many, and there haven’t been so many that I can’t remember what my mom always says, “This too shall pass.” The one thing I know for sure is that hard times call for big support systems, and boy do I have a good one...
From my mom who drops everything to come be with me when I need her;
To my dad who calls to hear my voice and ask what he can do to help me;
To my husband who constantly reminds me I’m his world and how great our life is together;
To my special friend who reminds me that a fight with Trip over clothes is a blessing and how she would give anything to have a fight with her son;
To my thoughtful friends who still cook for my family even though we aren’t in the hospital anymore and my life can’t be any busier than theirs;
To my childhood friends who tell me they are proud of me and that my family is always in their thoughts and prayers even though I may only see them once a decade;
To my dearest friend and confidant who never judges my parenting mistakes, reminds me what is real in this world and lets me give her advice so I can feel normal;
To my sweet friend who comes over for coffee and does my hair so I can feel special;
To my thoughtful neighbors who always check on Trip and allow their children to be part of his support system;
To my group of friends who remind me that time away from home and child is a good thing and always leave me more refreshed;
To my caring friend who always knows when it is a chemo weekend and constantly checks on us (and lets me snuggle her baby to calm me down);
To my closest friend who keeps me smiling with texts, ecards, and funnies about her life going on miles away…
These people are the ones who make hard days easier to handle and tough times not feel so long. I’m so thankful for my support system and know that there have been days I couldn’t have made it without some or all of these people. My wish is that I can be to someone what they have been to me.
Wednesday, September 4, 2013
Confirmation & Treatment
Trip had the biopsy last week and the results confirmed LCH. We will start at-home chemo this weekend. The doctor is willing to give it two cycles (3 weeks) to see if there is any improvement. If not, we will reevaluate from there. The doctor is determined that it will not spread this time. I’m determined too, but I wish she would be here to help me. She’s leaving Children’s at the end of September… oh boy am I going to miss her.
I forgot to mention in the last post that Trip broke his finger this summer. A broken finger pales in comparison to LCH, but we had to see a specialist last week because of how LCH has affected his bones in the past. The good news is it should heal beautifully in time and LCH will have no impact on the healing process. It only hurt him the first few days and doesn’t even bother him now. He’s one tough cookie.
Trip has an appointment on Thursday with his endocrinologist, who does not know the LCH has returned. The DI treatment shouldn’t change with this latest development unless we have to move to a stronger therapy at some point, but I’m still glad we are seeing her now to be sure.
I’m so thankful he can continue to go to school and we can tackle chemo on the weekends. I know he would hate to miss recess. ☺ Trip’s godmother reminded me of how I need to approach this situation. She said, “Mand, you gotta keep living life.” And she’s absolutely right. For me, for Trip, for our family life keeps going. There may be some limitations, but we need to live thankfully and joyfully in as many moments as possible. The goal is to approach this as a simple inconvenience instead of wrapping it up in emotional turmoil. Hopefully we can do it taking one day at a time.
I forgot to mention in the last post that Trip broke his finger this summer. A broken finger pales in comparison to LCH, but we had to see a specialist last week because of how LCH has affected his bones in the past. The good news is it should heal beautifully in time and LCH will have no impact on the healing process. It only hurt him the first few days and doesn’t even bother him now. He’s one tough cookie.
Trip has an appointment on Thursday with his endocrinologist, who does not know the LCH has returned. The DI treatment shouldn’t change with this latest development unless we have to move to a stronger therapy at some point, but I’m still glad we are seeing her now to be sure.
I’m so thankful he can continue to go to school and we can tackle chemo on the weekends. I know he would hate to miss recess. ☺ Trip’s godmother reminded me of how I need to approach this situation. She said, “Mand, you gotta keep living life.” And she’s absolutely right. For me, for Trip, for our family life keeps going. There may be some limitations, but we need to live thankfully and joyfully in as many moments as possible. The goal is to approach this as a simple inconvenience instead of wrapping it up in emotional turmoil. Hopefully we can do it taking one day at a time.
Sunday, August 25, 2013
The Dream
Ever had a dream where you never want to wake up? And when you do wake up you try so hard to go back to sleep to get back to the joyous moments you suddenly left in that dream state? The last five months were like that dream and now suddenly I’m awake again and in the harsh reality of the LCH disease.
Trip had an MRI and skeletal survey at the end of July. We felt confident going into them. We were hopeful until two days after the tests and before we had the results. Trip had gotten a haircut that was way overdue. After the haircut he went swimming and it was suddenly obvious to me that his scalp had red bumps on it, just like in the beginning of the disease. I tried to talk myself into believing the razor cut him, but my gut was screaming otherwise. Friends were trying to convince me he just has sensitive skin. I wanted to believe their sincere encouragements, but I knew better. His oncologist was on vacation, so we wouldn’t get results of the scans for a week or more but I thought for sure they would tell the real story. I called when I knew she was back in the office and asked about the scans. They were clear! We started planning the portal removal surgery, but in the meantime he needed a port flush just in case. We went for his port flush and I asked his doctor to look at his head. I could tell by the look on her face she knew the same thing I knew. LCH is back. I was abruptly awakened from the wonderful chemo-free dream we had been living in for the last five months.
Right now, the assumption is that he only has skin involvement since his scans were clear. We are catching it early before it has time to get to the rest of the body. The rule I have always heard is that if LCH comes back within a year, the patient must try a new chemotherapy protocol. That would mean that we are looking at the toxic chemo, clofarabine. Luckily, his doctor is of the mindset that we might be able to go back to methotrexate since it worked for him before and since we are only facing skin involvement right now. She does not want to try such a toxic drug for only skin, but if it spreads the only option will be clofarabine.
The bright side of all this is Trip has no risk organs involved, so we have much to be thankful for even when this pesky disease is inconvenient and makes my kid do things and know things that shouldn’t be any part of his young life. We are waiting for a biopsy next week to be 100% positive it is LCH, but the doctor is so certain she is willing to come up with his new treatment plan now. The red bumps haven’t gone away since I noticed them; they are more abundant. They weren’t there in March when he got off chemo; they are there now after fives months of not being on chemo. It’s back and I’m pissed.
I’m mostly sad for Trip. He is starting kindergarten tomorrow. He has looked forward to it for so long. Now, his kindergarten year will be filled with doctors’ appointments, hospital stays, chemo treatments, pokes, prods, and things no child should have to endure when they should be playing on a playground and learning to read & write. So yeah, I’m sad and pissed.
I feel like I learned so much through our first battle. I know being sad and mad isn’t going to get us far on this journey, but I’m allowing myself a pity party for a few days (and I’m reserving the right to have another bigger and better pity party when we get Trip’s treatment plan). I also know that we need to learn to live with the ups and downs of this disease. The statistics say LCH patients will have the disease on average four times in a lifetime. If this is going to be part of his life, our lives, my choice is to fight for him and with him. My choice is to find happiness and excitement in the little things and teach Trip to do the same even on the hard days. It’s not going to be easy, it’s not going to be fun, it’s not fair, but it’s all worth it to be Trip’s mom.
Trip had an MRI and skeletal survey at the end of July. We felt confident going into them. We were hopeful until two days after the tests and before we had the results. Trip had gotten a haircut that was way overdue. After the haircut he went swimming and it was suddenly obvious to me that his scalp had red bumps on it, just like in the beginning of the disease. I tried to talk myself into believing the razor cut him, but my gut was screaming otherwise. Friends were trying to convince me he just has sensitive skin. I wanted to believe their sincere encouragements, but I knew better. His oncologist was on vacation, so we wouldn’t get results of the scans for a week or more but I thought for sure they would tell the real story. I called when I knew she was back in the office and asked about the scans. They were clear! We started planning the portal removal surgery, but in the meantime he needed a port flush just in case. We went for his port flush and I asked his doctor to look at his head. I could tell by the look on her face she knew the same thing I knew. LCH is back. I was abruptly awakened from the wonderful chemo-free dream we had been living in for the last five months.
Right now, the assumption is that he only has skin involvement since his scans were clear. We are catching it early before it has time to get to the rest of the body. The rule I have always heard is that if LCH comes back within a year, the patient must try a new chemotherapy protocol. That would mean that we are looking at the toxic chemo, clofarabine. Luckily, his doctor is of the mindset that we might be able to go back to methotrexate since it worked for him before and since we are only facing skin involvement right now. She does not want to try such a toxic drug for only skin, but if it spreads the only option will be clofarabine.
The bright side of all this is Trip has no risk organs involved, so we have much to be thankful for even when this pesky disease is inconvenient and makes my kid do things and know things that shouldn’t be any part of his young life. We are waiting for a biopsy next week to be 100% positive it is LCH, but the doctor is so certain she is willing to come up with his new treatment plan now. The red bumps haven’t gone away since I noticed them; they are more abundant. They weren’t there in March when he got off chemo; they are there now after fives months of not being on chemo. It’s back and I’m pissed.
I’m mostly sad for Trip. He is starting kindergarten tomorrow. He has looked forward to it for so long. Now, his kindergarten year will be filled with doctors’ appointments, hospital stays, chemo treatments, pokes, prods, and things no child should have to endure when they should be playing on a playground and learning to read & write. So yeah, I’m sad and pissed.
I feel like I learned so much through our first battle. I know being sad and mad isn’t going to get us far on this journey, but I’m allowing myself a pity party for a few days (and I’m reserving the right to have another bigger and better pity party when we get Trip’s treatment plan). I also know that we need to learn to live with the ups and downs of this disease. The statistics say LCH patients will have the disease on average four times in a lifetime. If this is going to be part of his life, our lives, my choice is to fight for him and with him. My choice is to find happiness and excitement in the little things and teach Trip to do the same even on the hard days. It’s not going to be easy, it’s not going to be fun, it’s not fair, but it’s all worth it to be Trip’s mom.
Monday, June 10, 2013
May
I can’t believe May is behind us and we are into June. Trip has had two follow up appointments since he stopped chemo in March. The first one in April wasn’t great. He had some skin issues behind his ears that caused his doctor to be concerned. (LCH loves the area behind the ears.) He scratched it so much that she couldn’t tell if it was LCH or eczema. The thought that it could be LCH rearing its head again so soon was paralyzing. Luckily/thankfully, we have no signs today that it was LCH or that the disease is back. Since Trip is swimming so much right now, we have to be diligent about keeping his skin hydrated. If the skin is damaged so that the doctor can’t differentiate between LCH and something else, we are back to considering a biopsy and none of us want that. The second appointment went much better. His counts are fantastic, skin is still dry but no major issues, his eyes look great, and his reflexes on one leg look like they might be coming back. Yay! It was all great, great news, and we have so many reasons to give thanks. The doctor wants to wait until the end of July now to scan him to decide if the port can be removed. Hopefully (fingers crossed), he will start Kindergarten without a port. His MRI and x-rays will be on July 30. There will not be a PET scan unless there is reason to believe it is needed.
May was a wonderful month for us. We got to go on Trip’s Make A Wish trip to Disney World. It was non-stop fun for a week. We stayed at Give Kids the World. I cannot say enough good things about the work these two organizations do. It was a humbling experience on a personal level and on a communal level. To see kids who have been through literal hell getting the royal treatment, brought tears to my eyes many times. We went to every Disney park, Universal Studios, Sea World and the beach. We skipped all the lines, met so many characters, saw great shows and got to eat lots of junk food. But the best of all was making 7 days of memories with my family. When we were leaving Trip was crying and said, “I want to stay in Florida at Give Kids the World. I don’t want to go back to Texas where it’s Give Parents the World.”
Trip graduated from Montessori in May. I thought I would be sad, but I was beaming with pride. I’m so, so, so thankful he is where he is right now and watching him grow and change gives me such joy I think my heart might burst at times. He is strong and silly and happy and defiant. I’m thankful for all of it.
May did bring one dark cloud our way. We lost our beloved Rumple. She was almost 14 years old, which is unheard of for a German Shepherd. We are thankful for the years we had with her and especially thankful for her fierce protection. I still miss her especially in the mornings when we would spend quiet moments together.
I would say that I hope to give an update again soon, but really I don’t want anything to update until Trip’s next follow up or even after his scan. Staying healthy and happy and un-newsworthy are the goals for the foreseeable future. Much love to all.
May was a wonderful month for us. We got to go on Trip’s Make A Wish trip to Disney World. It was non-stop fun for a week. We stayed at Give Kids the World. I cannot say enough good things about the work these two organizations do. It was a humbling experience on a personal level and on a communal level. To see kids who have been through literal hell getting the royal treatment, brought tears to my eyes many times. We went to every Disney park, Universal Studios, Sea World and the beach. We skipped all the lines, met so many characters, saw great shows and got to eat lots of junk food. But the best of all was making 7 days of memories with my family. When we were leaving Trip was crying and said, “I want to stay in Florida at Give Kids the World. I don’t want to go back to Texas where it’s Give Parents the World.”
Trip graduated from Montessori in May. I thought I would be sad, but I was beaming with pride. I’m so, so, so thankful he is where he is right now and watching him grow and change gives me such joy I think my heart might burst at times. He is strong and silly and happy and defiant. I’m thankful for all of it.
May did bring one dark cloud our way. We lost our beloved Rumple. She was almost 14 years old, which is unheard of for a German Shepherd. We are thankful for the years we had with her and especially thankful for her fierce protection. I still miss her especially in the mornings when we would spend quiet moments together.
I would say that I hope to give an update again soon, but really I don’t want anything to update until Trip’s next follow up or even after his scan. Staying healthy and happy and un-newsworthy are the goals for the foreseeable future. Much love to all.
Friday, March 29, 2013
Disease Free
Today, on Good Friday, I write with such a grateful and joyous heart. Last night we finally received news we’ve been praying to hear for over two years… Trip is disease free. Disease free!! It’s still hard for me to believe.
Trip had MRI and PET scans on Tuesday (which both went smoothly – kudos to Children’s). Dr. Appel called last night with the results. The PET was negative… completely negative with no sign of disease. The MRI shows abnormalities in the base of the skull, but since the PET did not light up in that area the assumption is that it is not disease related and could possibly be bone regenerating. There were no signs of any disease activity in the brain. This is the 2nd MRI that has shown the same thing, so I finally feel comfortable accepting that whatever was seen at one time is no longer there.
The instructions are to stop chemo immediately. No more eight pills every six hours every other weekend and he can stop taking one chemo pill a day. In three months he will have another MRI. If there are no new signs of disease within those three months and the MRI is stable to improved, he will get his port removed.
There are still three meds he will continue to take, which are mostly due to the endocrine issues he will face the rest of his life. That’s a little confusing to him. When presented with the medicine he said, “I thought you said no more chemo??!?” The port removal will obviously be the biggest signal to him that he has won this battle.
Last night I had a sleepless night. My brain wouldn’t calm down. I kept imagining crossing a finish line that I’ve seen in the distance for months. It feels so good to have finished that race, but I know another one starts today. The race to keep Trip well and keep this disease at bay will be one we face for the rest of our lives.
I wish we could personally thank each person who has supported, prayed and loved us through the last two plus years. We couldn’t have made it without people in our lives pulling for us, crying with us, and holding us up when we didn’t think we could hold ourselves up any more. We are humbled by the love and support we are shown daily. Thank you. Thank you. Thank you.
Through tears I told Trip last night that it was over. “No more chemo, Baby! No more!” He screamed, “I’m the king of the world!!!” And right now, he is.
Trip had MRI and PET scans on Tuesday (which both went smoothly – kudos to Children’s). Dr. Appel called last night with the results. The PET was negative… completely negative with no sign of disease. The MRI shows abnormalities in the base of the skull, but since the PET did not light up in that area the assumption is that it is not disease related and could possibly be bone regenerating. There were no signs of any disease activity in the brain. This is the 2nd MRI that has shown the same thing, so I finally feel comfortable accepting that whatever was seen at one time is no longer there.
The instructions are to stop chemo immediately. No more eight pills every six hours every other weekend and he can stop taking one chemo pill a day. In three months he will have another MRI. If there are no new signs of disease within those three months and the MRI is stable to improved, he will get his port removed.
There are still three meds he will continue to take, which are mostly due to the endocrine issues he will face the rest of his life. That’s a little confusing to him. When presented with the medicine he said, “I thought you said no more chemo??!?” The port removal will obviously be the biggest signal to him that he has won this battle.
Last night I had a sleepless night. My brain wouldn’t calm down. I kept imagining crossing a finish line that I’ve seen in the distance for months. It feels so good to have finished that race, but I know another one starts today. The race to keep Trip well and keep this disease at bay will be one we face for the rest of our lives.
I wish we could personally thank each person who has supported, prayed and loved us through the last two plus years. We couldn’t have made it without people in our lives pulling for us, crying with us, and holding us up when we didn’t think we could hold ourselves up any more. We are humbled by the love and support we are shown daily. Thank you. Thank you. Thank you.
Through tears I told Trip last night that it was over. “No more chemo, Baby! No more!” He screamed, “I’m the king of the world!!!” And right now, he is.
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