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.
Thursday, March 21, 2013
Ignorance is NOT Bliss. Ignorance is Aggravating
Today was supposed to be the day of scans. The day to start the decision making process if Trip can stop chemo. That’s not the day we got.
We checked in to the hospital this morning at 10:45 (15 minutes early). Trip was already hungry and trying to be tough. He got x-rays and his PET scan was supposed to start by 12:30. By 12:40 we were still in the waiting room. We finally got back to a room just before 1:00 when we were told they didn’t have an anesthesiologist for us. There was an emergency that our scheduled doctor needed to attend to. (We completely get the fact that there are emergencies and that other patients sometimes take priority. There was no issue for us at that point.)
By the time they found a doctor and got Trip worked up and ready to go, he had been without food for over 17 hours. When they took his blood sugar level, guess what… it was LOW! Really?? Almost 18 hours without food and he has a low blood sugar… how shocking! What good use of that medical degree. (Hope everyone is reading the sarcasm I’m using.)
With a PET scan, his blood sugar has to be in a certain range to do the scan. The doctor came in and said they planned to give him apple juice and wait for an hour, do the MRI and then decide about the PET scan. I told them I wasn’t comfortable with that unless an endocrine doctor could be paged to oversee it since he would breakthrough in the middle of the scan and his fluids would need to be regulated. They balked at that until more news came in that the radiologist refused to do any scan. I guess we all get off easy – except Trip.
We were upset because Trip felt so crummy but were still a little bit understanding about it since they have no control over his glucose level and it is truly in Trip’s best interest not to scan him. We were not understanding about the events leading up to his low blood sugar. They could have taken is glucose when we first got in a room and if it was already too low we could have saved a couple of hours. They could have an emergency anesthesiologist on call so that if someone gets pushed another doctor knows to be there quickly.
Colson left the room obviously upset, so I stayed to finish rescheduling. I refused to go back downtown for an MRI and told them I would schedule that at Legacy. The PET scan has to be done downtown since there isn’t a machine at Legacy. It was scheduled for 10:30 on the 4th. That means a 9:30 check-in, which I mentioned. The doctor in the room said, “That means 9:30. Not 9:45. We have to coordinate ourselves and can’t do so until you check in, so be on time.” Now, I rarely get mad, but that pushed my buttons. I said, “We were 15 minutes early checking in today. Don’t worry about me being on time. You worry about yourselves being on time.” She left the room. The interaction did not end well.
Once Colson found out about the comment, he wasn’t ready for it to be over with at all. After a couple of calls with the hospital administration, he finally reached the right person. The administrator called our doctor who called me to make things right. Both scans will be scheduled at Dallas on Tuesday or Wednesday of next week first thing in the morning so there is no risk of low blood sugar or interfering with his breakthrough periods. There are more boring details about our treatment, but I’m too tired to relay them all.
Before we left the hospital, Trip drank the apple juice they offered him and on the way home he puked it up. Then he asked if he could take a nap. He has slowly eaten since we’ve been home, but still feels crummy and wants to sleep. I called the clinic and talked to one of our wonderful nurses we usually see. She explained that can be a normal reaction with low blood sugar.
Tomorrow, we will go to clinic for a port flush. We originally thought Trip would have chemo again, but since the scans will be next week we are putting chemo off – thank goodness.
Usually I don’t like conflict, but I’ll give it to Colson on this one. He fought for what was right and it only benefits Trip in the end. I’ll also give it to Children’s. In the last two plus years, we now have had three incidents worthy of complaining and they finally made an effort this time. Hopefully something is changing for the better.
On the way home, Colson and I talked about how we feel like the universe is telling us not to get the scans since it has been so difficult. Maybe ignorance is bliss, but today ignorance was just plain aggravating.
We checked in to the hospital this morning at 10:45 (15 minutes early). Trip was already hungry and trying to be tough. He got x-rays and his PET scan was supposed to start by 12:30. By 12:40 we were still in the waiting room. We finally got back to a room just before 1:00 when we were told they didn’t have an anesthesiologist for us. There was an emergency that our scheduled doctor needed to attend to. (We completely get the fact that there are emergencies and that other patients sometimes take priority. There was no issue for us at that point.)
By the time they found a doctor and got Trip worked up and ready to go, he had been without food for over 17 hours. When they took his blood sugar level, guess what… it was LOW! Really?? Almost 18 hours without food and he has a low blood sugar… how shocking! What good use of that medical degree. (Hope everyone is reading the sarcasm I’m using.)
With a PET scan, his blood sugar has to be in a certain range to do the scan. The doctor came in and said they planned to give him apple juice and wait for an hour, do the MRI and then decide about the PET scan. I told them I wasn’t comfortable with that unless an endocrine doctor could be paged to oversee it since he would breakthrough in the middle of the scan and his fluids would need to be regulated. They balked at that until more news came in that the radiologist refused to do any scan. I guess we all get off easy – except Trip.
We were upset because Trip felt so crummy but were still a little bit understanding about it since they have no control over his glucose level and it is truly in Trip’s best interest not to scan him. We were not understanding about the events leading up to his low blood sugar. They could have taken is glucose when we first got in a room and if it was already too low we could have saved a couple of hours. They could have an emergency anesthesiologist on call so that if someone gets pushed another doctor knows to be there quickly.
Colson left the room obviously upset, so I stayed to finish rescheduling. I refused to go back downtown for an MRI and told them I would schedule that at Legacy. The PET scan has to be done downtown since there isn’t a machine at Legacy. It was scheduled for 10:30 on the 4th. That means a 9:30 check-in, which I mentioned. The doctor in the room said, “That means 9:30. Not 9:45. We have to coordinate ourselves and can’t do so until you check in, so be on time.” Now, I rarely get mad, but that pushed my buttons. I said, “We were 15 minutes early checking in today. Don’t worry about me being on time. You worry about yourselves being on time.” She left the room. The interaction did not end well.
Once Colson found out about the comment, he wasn’t ready for it to be over with at all. After a couple of calls with the hospital administration, he finally reached the right person. The administrator called our doctor who called me to make things right. Both scans will be scheduled at Dallas on Tuesday or Wednesday of next week first thing in the morning so there is no risk of low blood sugar or interfering with his breakthrough periods. There are more boring details about our treatment, but I’m too tired to relay them all.
Before we left the hospital, Trip drank the apple juice they offered him and on the way home he puked it up. Then he asked if he could take a nap. He has slowly eaten since we’ve been home, but still feels crummy and wants to sleep. I called the clinic and talked to one of our wonderful nurses we usually see. She explained that can be a normal reaction with low blood sugar.
Tomorrow, we will go to clinic for a port flush. We originally thought Trip would have chemo again, but since the scans will be next week we are putting chemo off – thank goodness.
Usually I don’t like conflict, but I’ll give it to Colson on this one. He fought for what was right and it only benefits Trip in the end. I’ll also give it to Children’s. In the last two plus years, we now have had three incidents worthy of complaining and they finally made an effort this time. Hopefully something is changing for the better.
On the way home, Colson and I talked about how we feel like the universe is telling us not to get the scans since it has been so difficult. Maybe ignorance is bliss, but today ignorance was just plain aggravating.
March 6 Entry - Forgotten Post
Trip’s many appointments have been easy this week. His scans have been rescheduled for March 21. We need to keep him well until then. His oncologist will be out of town when we get results, so we will call the nurses instead of waiting until she gets back. Dr. Appel said she expects good news. There is one spot on his back we are watching, but hopefully it is nothing. If the scans come back clear, he will stop chemo, get scanned again in 3 months, and if those are still clear, his port can be removed. Trip has one more endocrine test to be scheduled that should be fairly simple. The test will determine if his adrenal glands are working and if they are we can take him off steroid medication. For now, he has chemo again this weekend and scans in about two weeks. Hopefully there won’t be much to update until we get results.
Trip’s soccer game last weekend was so exciting! They lost again, but he scored two of the three goals the Nijas made. He was so proud of himself and I was even more proud. There were a few happy tears, but they weren’t about the points scored or how well he played. At this time last year (and even two years ago), I wasn’t sure I would ever see him healthy enough to play a sport. To watch him having fun and doing something he enjoys is such a blessing to me. Gaky and Pops were here. I think Gaky yelled the entire game. I hope she will be allowed to go to another game (☺ only kidding). Trip has told everyone who will listen how many goals he scored and how he did it. Modesty is not his strong suit. Maybe we’ll work on that when he is 6.
Trip’s soccer game last weekend was so exciting! They lost again, but he scored two of the three goals the Nijas made. He was so proud of himself and I was even more proud. There were a few happy tears, but they weren’t about the points scored or how well he played. At this time last year (and even two years ago), I wasn’t sure I would ever see him healthy enough to play a sport. To watch him having fun and doing something he enjoys is such a blessing to me. Gaky and Pops were here. I think Gaky yelled the entire game. I hope she will be allowed to go to another game (☺ only kidding). Trip has told everyone who will listen how many goals he scored and how he did it. Modesty is not his strong suit. Maybe we’ll work on that when he is 6.
Tuesday, February 26, 2013
5
Trip turned 5 on Thursday. He had a list of things he required for the day before we could call him a 5 year old. He had a wonderful celebration at school. His teachers are amazingly patient and always take an opportunity to make any situation a learning experience. I’m glad he was “fussed” over at school. We had a calm family celebration on Thursday evening with a trip to Dave and Busters and cake. It wasn’t the celebration Trip originally had in mind, but between chemo, soccer and not knowing how well he would feel, that’s the best we could do. We want the next big celebration to be when he gets off chemo. When he woke up on Friday, he asked, “Mom, am I still 5?” When I said yes he told me that he needed to be sure.
I can’t believe he is 5. The last two years have been a blur. I feel like most of my memories involve the hospital in some way and sometimes that gets to me, but boy am I thankful I could be there with him during treatment. That’s proof of the wonderfully understanding and patient people I work for and with. I couldn’t ask for a better group of people supporting my family and me the last two years. I will never be able to repay their kindness.
Trip played in his first soccer game on Saturday. I think his team got beat 10-0, but it was fun to watch. He had to be told a few times to quit picking grass and to pay attention to where the ball was. He shook his head when the other team scored, but on the way home he said, “I didn’t even get upset that we lost!” I’m thankful he can play and thankful he can find joy even in losing. His godparents were there to support him and his godbrother spent the night with him. After chemo, soccer and a sleepover, he slept most of Sunday afternoon.
I called radiology last week to reschedule his scans. I was told the earliest they would schedule them is March 14 since he has to wait a month after having pneumonia. I’m not sure I ever got the official verdict of pneumonia, but I guess the ER doctor hinted at that. Dr. Appel will have to get special permission from the anesthesiologist to move up the scans, and I’m not sure that will happen. As of now, scans are still pending, so I’m sure he’ll have another round of chemo in a couple of weeks.
He has an appointment with his endocrinologist on Monday. His DI medication has not worked normally in the last few weeks. His normal dosage dropped in half and has started to come up again. That messes with life a little because I never know when he is going to breakthrough. The nighttime dose typically wears off around 5:00 a.m. each day, but one day it didn’t until 10:00 a.m. so school was out of the question. When that happens it’s a watch-and-see approach and puts us on alert. The doctor and I have been on the phone often to figure it out, so I’m glad we have an appointment next week. She is also planning to test his cortisol levels in hopes of taking him off hydrocortisone. We are all ready for that.
In the meantime, we will enjoy age 5. I’m so thankful he is 5.
I can’t believe he is 5. The last two years have been a blur. I feel like most of my memories involve the hospital in some way and sometimes that gets to me, but boy am I thankful I could be there with him during treatment. That’s proof of the wonderfully understanding and patient people I work for and with. I couldn’t ask for a better group of people supporting my family and me the last two years. I will never be able to repay their kindness.
Trip played in his first soccer game on Saturday. I think his team got beat 10-0, but it was fun to watch. He had to be told a few times to quit picking grass and to pay attention to where the ball was. He shook his head when the other team scored, but on the way home he said, “I didn’t even get upset that we lost!” I’m thankful he can play and thankful he can find joy even in losing. His godparents were there to support him and his godbrother spent the night with him. After chemo, soccer and a sleepover, he slept most of Sunday afternoon.
I called radiology last week to reschedule his scans. I was told the earliest they would schedule them is March 14 since he has to wait a month after having pneumonia. I’m not sure I ever got the official verdict of pneumonia, but I guess the ER doctor hinted at that. Dr. Appel will have to get special permission from the anesthesiologist to move up the scans, and I’m not sure that will happen. As of now, scans are still pending, so I’m sure he’ll have another round of chemo in a couple of weeks.
He has an appointment with his endocrinologist on Monday. His DI medication has not worked normally in the last few weeks. His normal dosage dropped in half and has started to come up again. That messes with life a little because I never know when he is going to breakthrough. The nighttime dose typically wears off around 5:00 a.m. each day, but one day it didn’t until 10:00 a.m. so school was out of the question. When that happens it’s a watch-and-see approach and puts us on alert. The doctor and I have been on the phone often to figure it out, so I’m glad we have an appointment next week. She is also planning to test his cortisol levels in hopes of taking him off hydrocortisone. We are all ready for that.
In the meantime, we will enjoy age 5. I’m so thankful he is 5.
Thursday, February 14, 2013
Delay of Game
Trip came home from school yesterday with a pretty high fever, so we were in the ER late yesterday afternoon for the standard protocol. His counts were good enough to be sent home after rocephin and a lung x-ray, but his ANC is understandably low after a chemo weekend. There seems to be something happening in his lungs similar to what was there in Nov/Dec, but they stopped short of calling it pneumonia this time even though we went home with the same prescription.
I left a message at the clinic to ask if we should even go in for his scans today. They called back to tell us not to go as soon as we pulled into the parking garage at Children’s downtown. They did not want Trip sedated while he is sick and something funny happening in his lungs. I feel good about postponing and want to focus on getting and keeping Trip healthy until cold and flu season passes. We will reschedule the scans once he is well.
He seems to feel better today, but he’s not 100%. Instead of having a follow-up appointment on Tuesday for scan results, it will likely be another checkup prior to starting chemo again the following weekend. And that’s okay too.
I left a message at the clinic to ask if we should even go in for his scans today. They called back to tell us not to go as soon as we pulled into the parking garage at Children’s downtown. They did not want Trip sedated while he is sick and something funny happening in his lungs. I feel good about postponing and want to focus on getting and keeping Trip healthy until cold and flu season passes. We will reschedule the scans once he is well.
He seems to feel better today, but he’s not 100%. Instead of having a follow-up appointment on Tuesday for scan results, it will likely be another checkup prior to starting chemo again the following weekend. And that’s okay too.
Monday, February 11, 2013
Scanxiety
Trip finished another round of chemo on Saturday morning. We are all hoping and praying this will be his last. He has scans on Thursday of this week. Believe it or not, he has x-rays, MRI and a PET scan all in one day. We have fought for this to happen for over two years now so that we limit anesthesia days and it’s finally happening. The downside is that they could only make it happen if the scans are in the afternoon, which means a very long day for Trip. He can’t eat after midnight, so I imagine he’ll be a little grumpy. I always have to remind myself that he completed a 12-hour water deprivation test when he was much younger and first diagnosed with DI, so in comparison Thursday should be a piece of cake. (Pun intended since I promised him he can eat a cupcake after his long day – maybe it’s a bribe but I don’t care.)
Trip finished chemo Saturday morning at 1:00 a.m. I couldn’t sleep after, so I got online to waste time and ended up in the histiocytosis support group reading posts and making myself crazy. Post after post was about how LCH returned within months of getting off chemo. Some parents even had their child’s port removed (which is what Trip wants more than anything) only to have another surgery to put it back a few months later to start chemo all over again. That wasn’t exactly a helpful sleep aid. Basically, I’m scared the scans won’t be clear, but I’m also scared they will be good and Trip will get off chemo only to have LCH return. I can’t be happy, huh?
I blame my poor online reading choices on the upcoming scans. I know all the statistics and I know exactly what to be scared of at this point, but I still sat there and read for a couple of hours. It’s hard to put into words what scans actually do to me. There is a certain amount of hope accompanied by unreasonable amounts of fear along with a myriad of what-ifs.
I know this lesson. Why can’t I live it? I know living in the past and remembering how hard it has been watching Trip battle this disease is no way to live. I know that fearing the future will only rob me of today’s joy and power. I know that living in this moment only is where I should focus at all times. I think I do a good job of that most of the time… until scan season (it’s a week but feels like a season to me).
We have had some great moments to live in recently. Trip started soccer and is having a ball even though he doesn’t understand or follow any of the rules. The team manager told the boys to kick the ball and in typical Trip fashion he yelled, “We’re trying LADY!!” He’s not the best player on the team, but he’s definitely the most enthusiastic. Trip also had his wish granted by the Make A Wish foundation. His wish is to go to Disney World. They brought him a Mickey balloon and told him he will get to go… months from now. Trip is into instant gratification, so the sentence didn’t mean much. His wish-granters must have anticipated that because they had a huge fire truck come to our house as part of his special day. Trip’s friend Carter was able to be with him (Carter had his Disney wish granted last year) and our neighbor Michael joined the fun. (Michael was probably the only neighbor who enjoyed the commotion!) The boys had a blast. They explored every inch of the fire truck, ambulance and chief’s car. They loved to ring the (very loud) bell on the front of the fire truck. He had so much fun that the firemen coming to his house could have been his wish, but there is more to come!
I hope I don’t have anything to update until next week after his follow-up appointment. No news is still good news, so I want to get through the scans and have a weekend of fun. Trip’s first soccer game is this weekend and the Fogleman family will be here to visit. We have so many blessings to be thankful for and so many memories to make.
Trip finished chemo Saturday morning at 1:00 a.m. I couldn’t sleep after, so I got online to waste time and ended up in the histiocytosis support group reading posts and making myself crazy. Post after post was about how LCH returned within months of getting off chemo. Some parents even had their child’s port removed (which is what Trip wants more than anything) only to have another surgery to put it back a few months later to start chemo all over again. That wasn’t exactly a helpful sleep aid. Basically, I’m scared the scans won’t be clear, but I’m also scared they will be good and Trip will get off chemo only to have LCH return. I can’t be happy, huh?
I blame my poor online reading choices on the upcoming scans. I know all the statistics and I know exactly what to be scared of at this point, but I still sat there and read for a couple of hours. It’s hard to put into words what scans actually do to me. There is a certain amount of hope accompanied by unreasonable amounts of fear along with a myriad of what-ifs.
I know this lesson. Why can’t I live it? I know living in the past and remembering how hard it has been watching Trip battle this disease is no way to live. I know that fearing the future will only rob me of today’s joy and power. I know that living in this moment only is where I should focus at all times. I think I do a good job of that most of the time… until scan season (it’s a week but feels like a season to me).
We have had some great moments to live in recently. Trip started soccer and is having a ball even though he doesn’t understand or follow any of the rules. The team manager told the boys to kick the ball and in typical Trip fashion he yelled, “We’re trying LADY!!” He’s not the best player on the team, but he’s definitely the most enthusiastic. Trip also had his wish granted by the Make A Wish foundation. His wish is to go to Disney World. They brought him a Mickey balloon and told him he will get to go… months from now. Trip is into instant gratification, so the sentence didn’t mean much. His wish-granters must have anticipated that because they had a huge fire truck come to our house as part of his special day. Trip’s friend Carter was able to be with him (Carter had his Disney wish granted last year) and our neighbor Michael joined the fun. (Michael was probably the only neighbor who enjoyed the commotion!) The boys had a blast. They explored every inch of the fire truck, ambulance and chief’s car. They loved to ring the (very loud) bell on the front of the fire truck. He had so much fun that the firemen coming to his house could have been his wish, but there is more to come!
I hope I don’t have anything to update until next week after his follow-up appointment. No news is still good news, so I want to get through the scans and have a weekend of fun. Trip’s first soccer game is this weekend and the Fogleman family will be here to visit. We have so many blessings to be thankful for and so many memories to make.
Tuesday, January 22, 2013
Trust
Colson and I were fortunate enough to be able to go on a cruise last week. Colson had some rough times last year with his business, but he worked hard and the cruise was a reward from his awesome vendor, ABC. Luckily, we have a rather large group of friends in the roofing industry who also made the trip. It was an 8-day cruise. I didn’t have it in me to leave for the full 8 days, so I met them at a halfway point. I had quite a bit of anxiety about leaving Trip given the amount of times we’ve been to the ER, but Gaky and Pops took such good care of him.
Trip was a trooper and didn’t end up in the ER until we got back on Saturday night… not kidding. If he had to go, I’m very thankful I could be with him and not stuck in the middle of the ocean. Gaky called to let us know Trip had fever when we were waiting for our flight home in Ft. Lauderdale. Colson said I bounced my leg the entire flight home. (I never said I don’t have any nervous ticks.) The verdict is the flu. Even with the flu shot, he still got it. If he has to have the flu, I’ll take this form every time. They gave him the regular “just in case” doses of rocephin and steroids and also started him on Tamiflu. He only had fever on Saturday and a cough is the only thing bothering him now. This isn’t the flu I’m familiar with but I’ll take it.
Trip had a regular clinic visit on Monday prior to starting chemo again this weekend. I felt better that Dr. Appel saw him after his flu diagnosis. She agreed that he looks great for someone with the flu. We will start chemo as scheduled on Friday as long as he doesn’t get fever before then.
During the visit, Dr. Appel shook things up a bit. She said this is supposed to be Trip’s LAST chemo treatment. This is week 52 of methotrexate and should be his LAST. (Everyone reading that like I’m typing it??? LAST L.A.S.T. LASTy McLASTerson chemo!!??!) I don’t want to get my hopes up but the fact that we are even at this point is so surreal. Before a final decision is made, he will have another round of scans to be sure there isn’t any active disease. There was talk at one point of keeping him on maintenance chemo since they are learning a longer maintenance phase lessens the chance of recurrence. I will ask to discuss that again before any final decision is made.
Trip has asked about getting his port taken out for so long. I hope it happens for him sooner rather than later. No port means no more ER visits when he gets a fever. No port means Trip will feel more “normal” than he does now when comparing himself to other kids. He still thinks getting a port out is a rite of passage and maybe that will coincide nicely with his 5th birthday.
I’ve thought a lot about trust lately. Even if I don’t always realize it, trust is something I easily have to give away on a daily basis. We all do. We have to trust the driver in the lane next to us will stay in his lane. We have to trust the pharmacist to put the right pills in our prescription bottles. We have to trust our families/friends to care for and protect us and those we love. We have to trust the airlines are going to land where they are supposed to land. We have to trust the captain of the ship won’t hit any icebergs. (OK, it was a Caribbean cruise… I digress.) Without trust, life would be boring. Relationships would be hindered. Business deals wouldn’t happen. Adventure would be rare. Trust is hard for me when it comes to Trip. I remind myself how much trusting I have done this far and how much more I have to do as a parent. I choose to trust that Trip will thrive in this life, that he will learn how to manage his disease and he will still have unlimited amounts of joy. I hope I do my best to teach him to trust others and teach him to be trustworthy himself. I hope I live that daily so he will see how important but how freeing trusting can be.
Trip was a trooper and didn’t end up in the ER until we got back on Saturday night… not kidding. If he had to go, I’m very thankful I could be with him and not stuck in the middle of the ocean. Gaky called to let us know Trip had fever when we were waiting for our flight home in Ft. Lauderdale. Colson said I bounced my leg the entire flight home. (I never said I don’t have any nervous ticks.) The verdict is the flu. Even with the flu shot, he still got it. If he has to have the flu, I’ll take this form every time. They gave him the regular “just in case” doses of rocephin and steroids and also started him on Tamiflu. He only had fever on Saturday and a cough is the only thing bothering him now. This isn’t the flu I’m familiar with but I’ll take it.
Trip had a regular clinic visit on Monday prior to starting chemo again this weekend. I felt better that Dr. Appel saw him after his flu diagnosis. She agreed that he looks great for someone with the flu. We will start chemo as scheduled on Friday as long as he doesn’t get fever before then.
During the visit, Dr. Appel shook things up a bit. She said this is supposed to be Trip’s LAST chemo treatment. This is week 52 of methotrexate and should be his LAST. (Everyone reading that like I’m typing it??? LAST L.A.S.T. LASTy McLASTerson chemo!!??!) I don’t want to get my hopes up but the fact that we are even at this point is so surreal. Before a final decision is made, he will have another round of scans to be sure there isn’t any active disease. There was talk at one point of keeping him on maintenance chemo since they are learning a longer maintenance phase lessens the chance of recurrence. I will ask to discuss that again before any final decision is made.
Trip has asked about getting his port taken out for so long. I hope it happens for him sooner rather than later. No port means no more ER visits when he gets a fever. No port means Trip will feel more “normal” than he does now when comparing himself to other kids. He still thinks getting a port out is a rite of passage and maybe that will coincide nicely with his 5th birthday.
I’ve thought a lot about trust lately. Even if I don’t always realize it, trust is something I easily have to give away on a daily basis. We all do. We have to trust the driver in the lane next to us will stay in his lane. We have to trust the pharmacist to put the right pills in our prescription bottles. We have to trust our families/friends to care for and protect us and those we love. We have to trust the airlines are going to land where they are supposed to land. We have to trust the captain of the ship won’t hit any icebergs. (OK, it was a Caribbean cruise… I digress.) Without trust, life would be boring. Relationships would be hindered. Business deals wouldn’t happen. Adventure would be rare. Trust is hard for me when it comes to Trip. I remind myself how much trusting I have done this far and how much more I have to do as a parent. I choose to trust that Trip will thrive in this life, that he will learn how to manage his disease and he will still have unlimited amounts of joy. I hope I do my best to teach him to trust others and teach him to be trustworthy himself. I hope I live that daily so he will see how important but how freeing trusting can be.
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