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.
Friday, March 29, 2013
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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