So, we had the meeting with Dr. Pene today. It went better than I had expected in my head, so that was good. Basically he told us that they are not going to do surgery at this point. The surgeons and Dr. Pene talked and the surgeons basically said that they could do surgery, but if there is any other options they would prefer to go with those first. Where the tumor is located is in his pelvic area is where they had done the surgery before and Dr. Christman said he was pretty much up to bone on the one side, and at his rectum/muscles in that area on the other. He feels that if they go in to do surgery, they will for sure damage that and he will be on a colostomy bag for the rest of his life. There is also a high risk that they could damage his urethra, and other muscles/things in that area.
The next option, and the one that he would recommend as the next step, is the high dose chemo with stem cell transplant. This is where they first go in and harvest his stem cells, and then do the high dose chemo which pretty much obliterates his blood/immune system. They then transplant his own cells back into his body to help him recover more quickly. They usually do 2 rounds of this with his type of cancer. The biggest problem with this is that the Naval hospital isn't equipped to do this procedure, so we will have to go to a different hospital that is able to do it. Right now we are hoping that Rady's, the children's hospital in San Diego, will accept him and we can do it there.
So the plan of action is for Dr. Pene to do a referral for us to speak to the doctor we would be working with at Rady's, this is where we will receive all the specific information about the procedure and be able to ask our questions of someone who has done this type of thing before. If that doctor agrees to do the procedure and accept Shad as a patient, then he will put the request into Tricare to be approved. At the point Tricare will approve or deny the procedure, and we will begin the process of transferring Shad to that doctor's care for the procedure. It looks like it could be a long process having to work through the insurance, and the other hospital, but we are pretty hopeful that every thing will work out and we will be able to give Shad this chance at being cancer free.
The high dose chemo is pretty much our last option from a chemo standpoint. Once he has that if the cancer doesn't go away, or if it were to come back, they wouldn't be able to give him any more chemo. They could do surgery at that point if there was something that could be surgically removed. The last option would be radiation, but if the cancer is in the same area it is now that would be a huge deal. The type of cancer Shad has only responds to high dose radiation, and so it would be pretty intense. Although it could kill the cancer, it would also damage anything around it. Since Shad's cancer is right up against his pelvic bone it would damage that. As he grows, the area of his pelvis that was exposed to the radiation would not grow. This would obviously cause a lot of problems, especially as he gets into his teenage years where he is doing a lot of major growing.
Dr. Pene ended the conversation with a simple I know this isn't what any of us wanted, but there are still promising options we can pursue. I like that he is still optimistic, it is reassuring, but he is also realistic. He doesn't tell us, oh this is going to be easy and wonderful, he is definitely straight forward and to the point, but he still offers hope where there is some to be found, if that makes sense.
Thursday, March 20, 2014
Tuesday, March 18, 2014
More Scans and Results
PART 1: SCAN DAY
So, as many of you know Shad had scans last Tueday, the 11 of March. We went into these scans hoping that they would be clear, and we could finally say for certain that the surgery had taken care of everything as we had previously thought. We were concerned however, because we knew that Shad's AFP was still high, and so we knew that there had to be a cause for that. I was secretly kind of hoping that they would find the cancer in a new spot, not because I want it to keep growing, but because then the previous surgery would have been successful, and maybe they would be able to do surgery again, and everything would work out all right.
Shad was excited to get his pictures taken, and to see Dr. Pene and Nurse Jo. He wasn't as excited about waking up at 5:30 (especially because he had snuck out of bed the night before and spent awhile making "concoctions" in the bathroom which resulted in falling asleep pretty late), getting poked, and not being allowed to eat or drink, until after the scans.
I had been worried because I got a call from neurology reminding us about Shad's scans and they said his MRI was at 10, but then I got THE call from the 4th floor (Pre-Op) saying we needed to be there no later than 6:30. I was wondering what in the world they were going to have us doing for so long, but it all ended up working out quite well. We stepped out of the elevator to find Dr. Wallace (one of the pediatric anesthesiologists) walking past. He walked with us to the window, grabbed our chart, and told us just to go down to the PICU to get Shad accessed. He had talked to one of the nurses there already and she was expecting us. We didn't even have to wait in one of the surgery waiting rooms, or talk to one of the corpsmen upstairs, it was wonderful. We headed down to the PICU where we waited a few minutes while the nurse finished up what she was doing and got everything ready. Shad got accessed and it was relatively quick and easy.
We headed over to neurology/x-ray to wait for the anesthesiologist to come down and let us know they were ready. About 7:45 he came in and told us it would be just a couple minutes. Shad was in the room and asleep by 8:00. Trevor and I headed downstairs to the Tricare office to try and get some things figured out regarding my pregnancy, referrals, and insurance (but that is a long story for another post). Once we got all our questions answered and things figured out there, we headed back up to wait for Shad. We signed some more paperwork for the pet scan portion of the imaging, and waited to be called back. They were way ahead of schedule, and we went back to pet/ct scan room by about 10:00 (we weren't scheduled to be there until 11). They did those scans which took about 30-45 minutes, and then we were taken back to the PICU for recovery/him to wake up.
Watching Shad come back from the anesthesia is pretty entertaining. He just slightly wakes up and is ready to sit up and go. He usually says some pretty funny things as well. He started waking up and wanted some juice. The corpsman would put the straw in his mouth but he wasn't quite awake enough to suck, or would fall back to sleep in the middle of drinking. After he had finished one box of juice he pulled my head in close, right next to his mouth and started whispering something. He was not awake so he was totally mumbling, and on top of that he was trying to whisper. I had absolutely no clue what he was saying. I kept telling him he was going to have to talk louder because I couldn't understand him, which was making him really mad. Finally, we figured out that he wanted a popsicle. The nurse was more than happy to get him one, and they even had blue which is his favorite. Once he recovered enough, we took him to the bathroom, and helped him get dressed so we could go out to the clinic and get some blood drawn.
He was still pretty groggy and really dizzy when walking, so Trevor had to carry him. We sat down and waited for Nurse Jo to finish up what she was doing. She called us back and we got Shad's blood drawn (this was to check his AFP for the first time since his last round of chemo). Once she finished she deaccessed him and we were on our way. We ended up going to Panera for lunch (Shad gets to pick on scan days because he is usually starving). It was nice to sit outside and eat our lunch together.
PART 2: THE RESULTS
Fast forward a few days to Friday morning. The phone rings and I notice that it is the hospital phone number, so I am pretty sure it is Dr. Pene. I answer, and sure enough, it is him. He asks how I am doing, and I say fine. He takes a deep breath and slowly exhales, which I know means it is not good news. He then tells me that the scans are back and they were not what we were hoping for. The area in his chest were they did the surgery is good. There is still a little bit of "surgical changes" he can see, but no cancer (which makes sense, since when they took that section out it was biopsied and declared non cancerous anyway). He then goes on to let me know that there is still cancer showing up in his pelvic area, on the right side. Then, as if that isn't hard to hear, he goes on to tell me that his AFP dropped but not as much as it "should have". It was at 485,000 the day they started chemo, and dropped down to 400,000. This may seem like a good drop, but in the past with this chemo it has usually dropped to about half of what it started at by this point (that would have been down to about 240,000 or possibly more). This response tells us that his body/cancer is not responding to the chemo like it once was, and means that the chemo is ineffective for getting rid of whatever cancer is left. He went on to tell me that he was going to be spending his weekend researching, and was also going to try to call the doctor he had consulted before in Boston, and see if he had any recommendations. He asked me to schedule an appointment for this coming Thursday, and said he hoped to have some options to present to us at that point. He also let me know that he had showed the scans to the surgeons (the pediatric surgeon, Dr. Ignacio, and the Urologist, Dr. Christman). He said "there is a surgery they are considering, but it is very morbid." He went on to explain that it was not a a decision they would be making after looking at his scans for 5 or 10 minutes, but would take awhile to decide if they would even consider doing it at this point, with all the information about Shad in front of them. He told me that if they decided it was something they would do, then we would obviously have a say in what happened. He said he would see us next week, and ended our conversation with "have a good weekend" which I found hilarious at the time. He had just told us all this not so good news, but still wanted us to have a good weekend. Now, I think he really just meant there was nothing we could do at that point, so to just try and let it go enough to enjoy our weekend, which we did.
So, as many of you know Shad had scans last Tueday, the 11 of March. We went into these scans hoping that they would be clear, and we could finally say for certain that the surgery had taken care of everything as we had previously thought. We were concerned however, because we knew that Shad's AFP was still high, and so we knew that there had to be a cause for that. I was secretly kind of hoping that they would find the cancer in a new spot, not because I want it to keep growing, but because then the previous surgery would have been successful, and maybe they would be able to do surgery again, and everything would work out all right.
Shad was excited to get his pictures taken, and to see Dr. Pene and Nurse Jo. He wasn't as excited about waking up at 5:30 (especially because he had snuck out of bed the night before and spent awhile making "concoctions" in the bathroom which resulted in falling asleep pretty late), getting poked, and not being allowed to eat or drink, until after the scans.
I had been worried because I got a call from neurology reminding us about Shad's scans and they said his MRI was at 10, but then I got THE call from the 4th floor (Pre-Op) saying we needed to be there no later than 6:30. I was wondering what in the world they were going to have us doing for so long, but it all ended up working out quite well. We stepped out of the elevator to find Dr. Wallace (one of the pediatric anesthesiologists) walking past. He walked with us to the window, grabbed our chart, and told us just to go down to the PICU to get Shad accessed. He had talked to one of the nurses there already and she was expecting us. We didn't even have to wait in one of the surgery waiting rooms, or talk to one of the corpsmen upstairs, it was wonderful. We headed down to the PICU where we waited a few minutes while the nurse finished up what she was doing and got everything ready. Shad got accessed and it was relatively quick and easy.
We headed over to neurology/x-ray to wait for the anesthesiologist to come down and let us know they were ready. About 7:45 he came in and told us it would be just a couple minutes. Shad was in the room and asleep by 8:00. Trevor and I headed downstairs to the Tricare office to try and get some things figured out regarding my pregnancy, referrals, and insurance (but that is a long story for another post). Once we got all our questions answered and things figured out there, we headed back up to wait for Shad. We signed some more paperwork for the pet scan portion of the imaging, and waited to be called back. They were way ahead of schedule, and we went back to pet/ct scan room by about 10:00 (we weren't scheduled to be there until 11). They did those scans which took about 30-45 minutes, and then we were taken back to the PICU for recovery/him to wake up.
Watching Shad come back from the anesthesia is pretty entertaining. He just slightly wakes up and is ready to sit up and go. He usually says some pretty funny things as well. He started waking up and wanted some juice. The corpsman would put the straw in his mouth but he wasn't quite awake enough to suck, or would fall back to sleep in the middle of drinking. After he had finished one box of juice he pulled my head in close, right next to his mouth and started whispering something. He was not awake so he was totally mumbling, and on top of that he was trying to whisper. I had absolutely no clue what he was saying. I kept telling him he was going to have to talk louder because I couldn't understand him, which was making him really mad. Finally, we figured out that he wanted a popsicle. The nurse was more than happy to get him one, and they even had blue which is his favorite. Once he recovered enough, we took him to the bathroom, and helped him get dressed so we could go out to the clinic and get some blood drawn.
He was still pretty groggy and really dizzy when walking, so Trevor had to carry him. We sat down and waited for Nurse Jo to finish up what she was doing. She called us back and we got Shad's blood drawn (this was to check his AFP for the first time since his last round of chemo). Once she finished she deaccessed him and we were on our way. We ended up going to Panera for lunch (Shad gets to pick on scan days because he is usually starving). It was nice to sit outside and eat our lunch together.
PART 2: THE RESULTS
Fast forward a few days to Friday morning. The phone rings and I notice that it is the hospital phone number, so I am pretty sure it is Dr. Pene. I answer, and sure enough, it is him. He asks how I am doing, and I say fine. He takes a deep breath and slowly exhales, which I know means it is not good news. He then tells me that the scans are back and they were not what we were hoping for. The area in his chest were they did the surgery is good. There is still a little bit of "surgical changes" he can see, but no cancer (which makes sense, since when they took that section out it was biopsied and declared non cancerous anyway). He then goes on to let me know that there is still cancer showing up in his pelvic area, on the right side. Then, as if that isn't hard to hear, he goes on to tell me that his AFP dropped but not as much as it "should have". It was at 485,000 the day they started chemo, and dropped down to 400,000. This may seem like a good drop, but in the past with this chemo it has usually dropped to about half of what it started at by this point (that would have been down to about 240,000 or possibly more). This response tells us that his body/cancer is not responding to the chemo like it once was, and means that the chemo is ineffective for getting rid of whatever cancer is left. He went on to tell me that he was going to be spending his weekend researching, and was also going to try to call the doctor he had consulted before in Boston, and see if he had any recommendations. He asked me to schedule an appointment for this coming Thursday, and said he hoped to have some options to present to us at that point. He also let me know that he had showed the scans to the surgeons (the pediatric surgeon, Dr. Ignacio, and the Urologist, Dr. Christman). He said "there is a surgery they are considering, but it is very morbid." He went on to explain that it was not a a decision they would be making after looking at his scans for 5 or 10 minutes, but would take awhile to decide if they would even consider doing it at this point, with all the information about Shad in front of them. He told me that if they decided it was something they would do, then we would obviously have a say in what happened. He said he would see us next week, and ended our conversation with "have a good weekend" which I found hilarious at the time. He had just told us all this not so good news, but still wanted us to have a good weekend. Now, I think he really just meant there was nothing we could do at that point, so to just try and let it go enough to enjoy our weekend, which we did.
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