We got excellent news from Dr. Christiansen on Friday. The tumor in the right eye has shrunk by 50%. The doctor even thinks it may be inactive, however, he lasered it to be safe. There were no new tumors and no activity in the old tumors.
We met with Dr. Neglia, Drew's oncologist, and he wants to do at least three rounds of chemo. His rationale is to make sure the tumor is died. If we stop treatment too early, the tumor could become chemo resistant making the chemo less effective in the future. He will, however, drop the most potent drug from round three. This drug has the most long term side effects.
Now for the not so good news. We hit a bump in the road to the second round of chemo. We started the nausea medication at 9:00 on Friday evening in prep for chemo around 10. We were running the saline flush, when Drew started screaming that it hurt. He cried until we called Papa Bob, then cried to Papa Bob that is hurt bad. Heidi called in the nurse, because this was unusual for him to get this upset. She looked at the port sight, and realized the needle was leaking fluid under his sign. His chest around his port had puffed up like a water balloon. They had to remove the needle and re-access his port. This was a major task on a tired 2 1/2 year old, he was extremely upset. There was a lot of biting, screaming at the top of his lungs, hitting everyone and even kicked the pregnant nurse in the stomach. I think this is the worst thing I have had to experience this far. It took four people to restrain him, so we could get his port re-accessed. We went back to the room and he continued to be hysterical, saying it hurt again. We pulled up his shirt and the fluid was leaking under his skin again. At his point, Drew was inconsolable. No one but Mom could come with 8 feet of him. They had to give him a sedative, to relax him. At this point the resident decided to get an x-ray to get a picture of the port. One of the nurses stopped her, and told her that it wasn't the needle but that there was something wrong with the port. The resident wanted to flush the port again, but I refused until a specialist looked at the port. This was 11:30 at night, so there was no one available. The resident put a call into the pediatric oncologist, who told them not to use the port line until further notified. She asked them to do an x-ray and schedule Operating Room time in the morning to have a surgeon look at the port. This leak in the port was a major deal, because we were minutes from putting chemo into the port. If chemo would have been put into that port, it would have burned all the skin off his body for as far as the chemo drugs traveled. The next morning they tried to get a radiologist to look at the port. They came up to get us and when we were walking down to the test room, I asked if the surgeon would be on hand to replace the port if necessary. The radiologist said no and that we would need to schedule time in the operating room to do the port replacement. She indicated they don't sedate for this procedure. She indicated that all they would do is access his port (a non-working one at that), put liquid through it, and have him hold still for pictures. There was no chance he was going to participate in this process. The oncologist insisted that there was no other way than to sedate him. After she discussed it with the radiologist, they decided he needed to be sedated. Unfortunately, there was 4 transplants going on Saturday and there was no doctor available. Long and short, we would not be starting chemo on Saturday. They allowed us to play hookie on Saturday, and come back Saturday night. Today, Drew went in for a 2 hour surgery where they removed the old port and put a new one in on the other side of this chest. Based on what the doctor could tell, there was a break in the line. He could not go over the same spot, because it was too swollen from the liquid leaking under his skin. Drew now has matching scars one on each side of his chest. In the long run, a small price to pay.
About 1 PM today, Drew started chemo. If things stay on track, he should be out tomorrow sometime about mid to late afternoon. We feel so bad for him for all that he went through this weekend. For the first time in a long time, Drew's eyes showed signs of breaking. Now that he's older, he knows what's going on and as of right now, he trusts no one. As more days come, he'll gain his trust back but it's one of the hardest things to see is your child's spirit break.
Please continue to keep him in your prayers. We appreciate it!
We met with Dr. Neglia, Drew's oncologist, and he wants to do at least three rounds of chemo. His rationale is to make sure the tumor is died. If we stop treatment too early, the tumor could become chemo resistant making the chemo less effective in the future. He will, however, drop the most potent drug from round three. This drug has the most long term side effects.
Now for the not so good news. We hit a bump in the road to the second round of chemo. We started the nausea medication at 9:00 on Friday evening in prep for chemo around 10. We were running the saline flush, when Drew started screaming that it hurt. He cried until we called Papa Bob, then cried to Papa Bob that is hurt bad. Heidi called in the nurse, because this was unusual for him to get this upset. She looked at the port sight, and realized the needle was leaking fluid under his sign. His chest around his port had puffed up like a water balloon. They had to remove the needle and re-access his port. This was a major task on a tired 2 1/2 year old, he was extremely upset. There was a lot of biting, screaming at the top of his lungs, hitting everyone and even kicked the pregnant nurse in the stomach. I think this is the worst thing I have had to experience this far. It took four people to restrain him, so we could get his port re-accessed. We went back to the room and he continued to be hysterical, saying it hurt again. We pulled up his shirt and the fluid was leaking under his skin again. At his point, Drew was inconsolable. No one but Mom could come with 8 feet of him. They had to give him a sedative, to relax him. At this point the resident decided to get an x-ray to get a picture of the port. One of the nurses stopped her, and told her that it wasn't the needle but that there was something wrong with the port. The resident wanted to flush the port again, but I refused until a specialist looked at the port. This was 11:30 at night, so there was no one available. The resident put a call into the pediatric oncologist, who told them not to use the port line until further notified. She asked them to do an x-ray and schedule Operating Room time in the morning to have a surgeon look at the port. This leak in the port was a major deal, because we were minutes from putting chemo into the port. If chemo would have been put into that port, it would have burned all the skin off his body for as far as the chemo drugs traveled. The next morning they tried to get a radiologist to look at the port. They came up to get us and when we were walking down to the test room, I asked if the surgeon would be on hand to replace the port if necessary. The radiologist said no and that we would need to schedule time in the operating room to do the port replacement. She indicated they don't sedate for this procedure. She indicated that all they would do is access his port (a non-working one at that), put liquid through it, and have him hold still for pictures. There was no chance he was going to participate in this process. The oncologist insisted that there was no other way than to sedate him. After she discussed it with the radiologist, they decided he needed to be sedated. Unfortunately, there was 4 transplants going on Saturday and there was no doctor available. Long and short, we would not be starting chemo on Saturday. They allowed us to play hookie on Saturday, and come back Saturday night. Today, Drew went in for a 2 hour surgery where they removed the old port and put a new one in on the other side of this chest. Based on what the doctor could tell, there was a break in the line. He could not go over the same spot, because it was too swollen from the liquid leaking under his skin. Drew now has matching scars one on each side of his chest. In the long run, a small price to pay.
About 1 PM today, Drew started chemo. If things stay on track, he should be out tomorrow sometime about mid to late afternoon. We feel so bad for him for all that he went through this weekend. For the first time in a long time, Drew's eyes showed signs of breaking. Now that he's older, he knows what's going on and as of right now, he trusts no one. As more days come, he'll gain his trust back but it's one of the hardest things to see is your child's spirit break.
Please continue to keep him in your prayers. We appreciate it!
2 comments:
Heidi, Tony, and Drew-
We've been thinking about you since we left. Glad you were able to start chemo. So sorry you had to go through everything with the port.
We'll say special prayers for your little man. It must be horrible to see him so down. He's such a trooper.
We formed a team for Anders for Time to Fly. Hope to see you all there. Way to go with the fundraising!
Gini Breidenbach
Oh Heidi and Tony- I cried reading this. Really, can't imagine you watching Drew go through all of that! Thank God you are so on top of things. We are so excited to see all of you next weekend!
Jamie
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