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.
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