Brain Tumor Summary
During our time when we were dealing with the brain tumor for Little B, we had a secure website, as I wasn't sure how great I was going to be on keeping things straight. These are the posts from the secure website, after they have been scrubbed of too much personal detail:
... And we're home!
Posted Nov 9, 2010 12:08am
We actually got home yesterday at 2:30 pm, but I'll be honest and say that I didn't want to jinx how well Little B was doing. After 30-some odd hours, we are merrily chugging along, which is a relief. The hospital room was getting amazingly smallll...
We are working to settle back in, but it is going to take some time. Little B is pretty stressed out and melts down if either G or I leave the room. Sleeping is also hard on him -- and us -- he gets pretty disoriented at night.
I'm not sure what changed or clicked in such that the vomiting stopped, however, it could have been just an unfortunately timed virus. Or post-surgery wonkiness. It's hard to tell.
We have follow-up visits on Wednesday, so hopefully we'll have a better understanding of the plan to transition Little B from the NG tube to eating like a real kid... I'm so excited.
I'd like to thank you all again for your prayers and support; I'm pretty much certain we couldn't have made it through the past two weeks without your kind thoughts and messages. Thank you, thank you, thank you!
No Chemo! Still in hospital
Posted Nov 4, 2010 3:35pm
More good news: the tumor board indicated that Little B will not need to do chemo!!! We will have to do quarterly MRIs of both his brain and spine, but other than that, no further tumor treatment is required. How awesome is that?
In not-so-great news, Little B is still having trouble keeping anything down. He is currently getting calories through IV, but this isn't a great option (and obviously not feasible long-term). They have a number of things that they are thinking that could be the ultimate cause of the vomiting, but they don't really have a front-runner. So, it honestly looks like at least the weekend in the hospital for us unless something truly dramatic turns things around for Little B.
In any case, great news on the chemo.
Bounce
Posted Nov 2, 2010 2:51pm
We are again enjoying the hospitality of Doernbechers... bummer! We ended up in the ER on Sunday night and were transfered to the step-down unit we had just left on Friday night. It looks like we will be here for a few more days. Little B has been vomiting since Saturday and has not kept anything down. He's on an IV for fluids and the pediatricians are trying to figure out what is going on. The current theory is that the pain medicine shut down his digestive system, so he needs to get the system "kick started." In the interest of not over-sharing, I'll leave it to your imagination or experience as to how such things get re-started. Unfortunately, it means he is solely on Tylenol for pain management, which does not seem to be completely getting the job done.
So the good news is that Little B is no longer a neurosurgery patient, but is instead a general peds patient. Neurosurgery is happy with his progress from a brain-function standpoint. He can talk, walk, point, eyes are tracking, wound is healing. All good things. Hopefully, the digestive track will come around soon.
Home, sweet, home
Posted Oct 30, 2010 2:01pm
So this is easily a week of highs and lows. Last night: a high. We were released from the hospital last night, which I think on the whole is a good thing. I will admit that G and I are pretty nervous about being home without a hospital full of neurosurgeons, cardiologists, hospitalists, nurses, nurse practioners... That being said, I think it is much, much better for Little B to be home. He was going a few steps beyond freaked out at the hospital -- way too stressful for the little guy.
That being said, Little B is refusing to be put down at this point, and we're having a heck of a time calming him down. Well, given all he's been through over the past week, I figure we can basically wear the kiddo for a few days. Hopefully, though, we can find a way to get him to sleep at least next to us instead of in our arms -- G is having a heck of a time sleeping in the rocker.
We don't really know our next steps at this point. The "tumor team" at OHSU will meet next week to discuss Little B's ongoing treatment plan. At this point, I think we are going to be happy to focus on getting Little B back to his old happy self.
We just won the brain tumor lottery!!!
Posted Oct 28, 2010 4:11pm
So holy cow-- we just got easily the best news I've heard in a while. The final pathology report came back this morning: The tumor is an exophytic Juvenile Pilocytic Astrocytoma ("JPA"). This is amazing, wonderful news. JPA is a grade 1 tumor -- the least aggressive. The presurgery MRI of his spine found something that was judged to be metastases (tumor seeds). With the met(s), they thought is was surely a medulablastoma -- a grade 4 tumor (the most aggressive, dangerous type). Well, the curiosity is that JPAs almost never have mets associated with them. Just doesn't happen. So... Little B is either an outlier in the JPA universe or the radiology report was inaccurate or picked up something that was not actually a met. Apparently, radiology is a bit of science and a bit of voodoo. There is debate in some of the research if JPA is actually benign, and not a cancer at all, just a tumor. Whatever the semantics, we're thrilled (not that he had a tumor, just that if he had to have a tumor, this is the one to have).
Little B is doing well today, moving a little more and speaking more. He is still in lots of pain. He is on a nice little pharma cocktail, which seems to help a great deal. Occupational therapy took a look at him and was pleased with the progress. He sat up on his own for a little and played. He was also doing a good job of eating, having some cottage cheese and apple juice this morning.
Inch-by-inch
Posted Oct 26, 2010 10:30pm
Today was long, but amazing. Both of Little B's CT scans were good, as was his MRI. The MRI indicated that much (but not all) of the tumor was removed, and the neuro folks were pleased (which makes us happy, as well). With S's interest in the case (and the near miss, which EVERYONE has told us about over and over and over -- it's like that sports desk thing they do for football, but for surgical people), we hope he will push on the pathology people. So that we can talk to the oncology people.
Little B's pediatrician from the feeding clinic stopped by and indicated that Little B is [unknowingly] the talk of the feeding clinic. Apparently our "team" has been elevated to the "it" crowd. Good enough.
They removed Little B from the ventilator at about 4 pm PT, and then I got perhaps the best present of my life: I got to snuggle with Little B again. He slept soundly for about two hours. G is holding him now. What a blissful miracle. Our nurses are going to help us introduce some ice chips, and hopefully we can graduate to some apple juice soon. Tonight we might be able to reintroduce formula, but will need to go slow.
Good news. Big challenges.
Posted Oct 26, 2010 1:26am
Well, holy cow. It has been a long day all around. There may be some errors in this, as all I feel right now is relief and light-headedness (probably from holding my breath all day):
1. Little B is out of surgery. He got back around 7:30 or 8 pm. He's heavily sedated because the little punk pulled out his breathing tube (they promptly put it back in, of course).
2. The neurosurgeon (S) indicated that he's never lost a kid during a tumor resection surgery like this, and after Little B's surgery indicated that he would not make such a claim again. It is amazing Little B is still with us, from all accounts. Everyone was a little freaked by how touch-and-go it got.
3. They got the tumor as well as could be hoped, and was not at all what they thought it was. Instead of pressing against the brain stem, it was growing OUT of the brain stem. This potentially makes the tumor super-rare. The fact that it dropped mets into the spine makes it a super-rare subset of the super-rare tumor. Then again, the final pathology will take about four days, so we won't know for sure until then.
OK, well, that's it for now. This has easily been the longest day of our lives. But we're all still kicking.
Waiting
Posted Oct 25, 2010 2:17pm
Our surgery is still scheduled for noon, but we are pretty sure that it will be pushed back and hour or so. Little B is getting a little anxious, and we can't give him anything to eat or drink.
We did have a really nice trip outside to the playground, and to see the fishes on the 6th floor.
Not great news
Posted Oct 24, 2010 9:43pm
Well, not a banner day for us. A resident blurted out that Little B does have mets throughout his spine [Editor’s note: this guy was totally wrong.]. The real neurosurgeon wasn’t in to tell us more details and I wasn't dealing with junior any more. This doesn’t change our initial plan, though: tumor out tomorrow, then chemo.
Otherwise, today was as idyllic as you could hope for in the PICU: Little B got a bath, we broke out and played at a playground (doctor's orders) – it was good for our souls. Bobby (my dad) came in from Michigan to be with us, and Big A, Mimi and Hea played with us as well.
We have more info on Little B’s surgery: It should start at noon PT, and run for (ideally) about four hours. He’ll be unconscious for one to four days. For the first few days after the surgery, Little B is going to have one heck of a headache. We need to keep things as quiet and as calm as they can be in an ICU setting. If you plan to visit, we’ll love it, just know that we’ll probably visit for a pretty short period of time, outside of the room Little B is in, and without kids. You know we love kids, we just need things quiet for now.
Saturday, PM edition
Posted Oct 23, 2010 11:37pm
Well, we finished up the MRI without incident. Thankfully, we don't have a definitive word back on the results of the MRI. Apparently, if the technician sees something concerning, s/he will get the radiologist immediately and they'll take it from there. That didn't happen. Also, right after they get done with a scan, the radiologist will take a quick glance through things, and then they'll tell you what they see and call the "team" in. That didn't happen either. So they will do the "formal" read-through and look for little things. We haven't heard back on that, so I'm hopeful that we won't be dealing with cancer in two places. Just the brain.
Goodness, that sounds weird, right? "What great news--just one brain tumor." I've been struggling to get my head around this all day, really. How could my kid have a tumor in his brain? I will be honest and say that we didn't see anything weird or that quirky about him. And he has been seen by literally 50 doctors in trying to get the feeding thing under control. They didn't see anything neuro-odd about him either. So weird.
Carrie and Mike visited us this afternoon, which was wonderful.Big A, Mimi and Hea carved pumpkins this morning and brought us pictures.Big A is having a hard time wrapping his head around this as well, with the added challenge of him being five (and having a tremendous imagination). What sweet insanity.
Saturday, am edition
Posted Oct 23, 2010 12:25pm
Little B didn't end up getting an MRI yesterday due to a software problem with the MRI machines -- all the machines went down simultaneously. In any case, we kept him as happy as possible (while still being monitored). Mimi, Hea, Big A and Nicole all came for nice visits.
While I have often been annoyed with Doernbechers during the diagnostic phase of figuring out Little B's issues, I am amazed at the pediatric neurosurgeons and pediatric oncologists that we are meeting. We met our "team" yesterday. The pediatric neurosurgeon is the department head, and has been here for 11 years -- Dr. S. The oncologist is also the department head for his group. Both nice enough, but more importantly very competent people.
Little B is currently in his MRI. We carried him down, and all the way he was waving and talking to people. He saw an exit to the outside and rather frantically started pointing at it as if to say, "Get me the he** out of here, mama!" Poor kid. In any case, they are scanning his spine because the placement of the tumor in his brain is in/near a "river" spinal fluid, which means that some of the tumor could have broken off and travelled to his spine. We're seriously hoping that in fact has not happened and we're just dealing with one discreet tumor (I'm not sure why, but it seems like that should be easier to treat -- at least I hope so!).
... And we're home!
Posted Nov 9, 2010 12:08am
We actually got home yesterday at 2:30 pm, but I'll be honest and say that I didn't want to jinx how well Little B was doing. After 30-some odd hours, we are merrily chugging along, which is a relief. The hospital room was getting amazingly smallll...
We are working to settle back in, but it is going to take some time. Little B is pretty stressed out and melts down if either G or I leave the room. Sleeping is also hard on him -- and us -- he gets pretty disoriented at night.
I'm not sure what changed or clicked in such that the vomiting stopped, however, it could have been just an unfortunately timed virus. Or post-surgery wonkiness. It's hard to tell.
We have follow-up visits on Wednesday, so hopefully we'll have a better understanding of the plan to transition Little B from the NG tube to eating like a real kid... I'm so excited.
I'd like to thank you all again for your prayers and support; I'm pretty much certain we couldn't have made it through the past two weeks without your kind thoughts and messages. Thank you, thank you, thank you!
No Chemo! Still in hospital
Posted Nov 4, 2010 3:35pm
More good news: the tumor board indicated that Little B will not need to do chemo!!! We will have to do quarterly MRIs of both his brain and spine, but other than that, no further tumor treatment is required. How awesome is that?
In not-so-great news, Little B is still having trouble keeping anything down. He is currently getting calories through IV, but this isn't a great option (and obviously not feasible long-term). They have a number of things that they are thinking that could be the ultimate cause of the vomiting, but they don't really have a front-runner. So, it honestly looks like at least the weekend in the hospital for us unless something truly dramatic turns things around for Little B.
In any case, great news on the chemo.
Bounce
Posted Nov 2, 2010 2:51pm
We are again enjoying the hospitality of Doernbechers... bummer! We ended up in the ER on Sunday night and were transfered to the step-down unit we had just left on Friday night. It looks like we will be here for a few more days. Little B has been vomiting since Saturday and has not kept anything down. He's on an IV for fluids and the pediatricians are trying to figure out what is going on. The current theory is that the pain medicine shut down his digestive system, so he needs to get the system "kick started." In the interest of not over-sharing, I'll leave it to your imagination or experience as to how such things get re-started. Unfortunately, it means he is solely on Tylenol for pain management, which does not seem to be completely getting the job done.
So the good news is that Little B is no longer a neurosurgery patient, but is instead a general peds patient. Neurosurgery is happy with his progress from a brain-function standpoint. He can talk, walk, point, eyes are tracking, wound is healing. All good things. Hopefully, the digestive track will come around soon.
Home, sweet, home
Posted Oct 30, 2010 2:01pm
So this is easily a week of highs and lows. Last night: a high. We were released from the hospital last night, which I think on the whole is a good thing. I will admit that G and I are pretty nervous about being home without a hospital full of neurosurgeons, cardiologists, hospitalists, nurses, nurse practioners... That being said, I think it is much, much better for Little B to be home. He was going a few steps beyond freaked out at the hospital -- way too stressful for the little guy.
That being said, Little B is refusing to be put down at this point, and we're having a heck of a time calming him down. Well, given all he's been through over the past week, I figure we can basically wear the kiddo for a few days. Hopefully, though, we can find a way to get him to sleep at least next to us instead of in our arms -- G is having a heck of a time sleeping in the rocker.
We don't really know our next steps at this point. The "tumor team" at OHSU will meet next week to discuss Little B's ongoing treatment plan. At this point, I think we are going to be happy to focus on getting Little B back to his old happy self.
We just won the brain tumor lottery!!!
Posted Oct 28, 2010 4:11pm
So holy cow-- we just got easily the best news I've heard in a while. The final pathology report came back this morning: The tumor is an exophytic Juvenile Pilocytic Astrocytoma ("JPA"). This is amazing, wonderful news. JPA is a grade 1 tumor -- the least aggressive. The presurgery MRI of his spine found something that was judged to be metastases (tumor seeds). With the met(s), they thought is was surely a medulablastoma -- a grade 4 tumor (the most aggressive, dangerous type). Well, the curiosity is that JPAs almost never have mets associated with them. Just doesn't happen. So... Little B is either an outlier in the JPA universe or the radiology report was inaccurate or picked up something that was not actually a met. Apparently, radiology is a bit of science and a bit of voodoo. There is debate in some of the research if JPA is actually benign, and not a cancer at all, just a tumor. Whatever the semantics, we're thrilled (not that he had a tumor, just that if he had to have a tumor, this is the one to have).
Little B is doing well today, moving a little more and speaking more. He is still in lots of pain. He is on a nice little pharma cocktail, which seems to help a great deal. Occupational therapy took a look at him and was pleased with the progress. He sat up on his own for a little and played. He was also doing a good job of eating, having some cottage cheese and apple juice this morning.
Inch-by-inch
Posted Oct 26, 2010 10:30pm
Today was long, but amazing. Both of Little B's CT scans were good, as was his MRI. The MRI indicated that much (but not all) of the tumor was removed, and the neuro folks were pleased (which makes us happy, as well). With S's interest in the case (and the near miss, which EVERYONE has told us about over and over and over -- it's like that sports desk thing they do for football, but for surgical people), we hope he will push on the pathology people. So that we can talk to the oncology people.
Little B's pediatrician from the feeding clinic stopped by and indicated that Little B is [unknowingly] the talk of the feeding clinic. Apparently our "team" has been elevated to the "it" crowd. Good enough.
They removed Little B from the ventilator at about 4 pm PT, and then I got perhaps the best present of my life: I got to snuggle with Little B again. He slept soundly for about two hours. G is holding him now. What a blissful miracle. Our nurses are going to help us introduce some ice chips, and hopefully we can graduate to some apple juice soon. Tonight we might be able to reintroduce formula, but will need to go slow.
Good news. Big challenges.
Posted Oct 26, 2010 1:26am
Well, holy cow. It has been a long day all around. There may be some errors in this, as all I feel right now is relief and light-headedness (probably from holding my breath all day):
1. Little B is out of surgery. He got back around 7:30 or 8 pm. He's heavily sedated because the little punk pulled out his breathing tube (they promptly put it back in, of course).
2. The neurosurgeon (S) indicated that he's never lost a kid during a tumor resection surgery like this, and after Little B's surgery indicated that he would not make such a claim again. It is amazing Little B is still with us, from all accounts. Everyone was a little freaked by how touch-and-go it got.
3. They got the tumor as well as could be hoped, and was not at all what they thought it was. Instead of pressing against the brain stem, it was growing OUT of the brain stem. This potentially makes the tumor super-rare. The fact that it dropped mets into the spine makes it a super-rare subset of the super-rare tumor. Then again, the final pathology will take about four days, so we won't know for sure until then.
OK, well, that's it for now. This has easily been the longest day of our lives. But we're all still kicking.
Waiting
Posted Oct 25, 2010 2:17pm
Our surgery is still scheduled for noon, but we are pretty sure that it will be pushed back and hour or so. Little B is getting a little anxious, and we can't give him anything to eat or drink.
We did have a really nice trip outside to the playground, and to see the fishes on the 6th floor.
Not great news
Posted Oct 24, 2010 9:43pm
Well, not a banner day for us. A resident blurted out that Little B does have mets throughout his spine [Editor’s note: this guy was totally wrong.]. The real neurosurgeon wasn’t in to tell us more details and I wasn't dealing with junior any more. This doesn’t change our initial plan, though: tumor out tomorrow, then chemo.
Otherwise, today was as idyllic as you could hope for in the PICU: Little B got a bath, we broke out and played at a playground (doctor's orders) – it was good for our souls. Bobby (my dad) came in from Michigan to be with us, and Big A, Mimi and Hea played with us as well.
We have more info on Little B’s surgery: It should start at noon PT, and run for (ideally) about four hours. He’ll be unconscious for one to four days. For the first few days after the surgery, Little B is going to have one heck of a headache. We need to keep things as quiet and as calm as they can be in an ICU setting. If you plan to visit, we’ll love it, just know that we’ll probably visit for a pretty short period of time, outside of the room Little B is in, and without kids. You know we love kids, we just need things quiet for now.
Saturday, PM edition
Posted Oct 23, 2010 11:37pm
Well, we finished up the MRI without incident. Thankfully, we don't have a definitive word back on the results of the MRI. Apparently, if the technician sees something concerning, s/he will get the radiologist immediately and they'll take it from there. That didn't happen. Also, right after they get done with a scan, the radiologist will take a quick glance through things, and then they'll tell you what they see and call the "team" in. That didn't happen either. So they will do the "formal" read-through and look for little things. We haven't heard back on that, so I'm hopeful that we won't be dealing with cancer in two places. Just the brain.
Goodness, that sounds weird, right? "What great news--just one brain tumor." I've been struggling to get my head around this all day, really. How could my kid have a tumor in his brain? I will be honest and say that we didn't see anything weird or that quirky about him. And he has been seen by literally 50 doctors in trying to get the feeding thing under control. They didn't see anything neuro-odd about him either. So weird.
Carrie and Mike visited us this afternoon, which was wonderful.Big A, Mimi and Hea carved pumpkins this morning and brought us pictures.Big A is having a hard time wrapping his head around this as well, with the added challenge of him being five (and having a tremendous imagination). What sweet insanity.
Saturday, am edition
Posted Oct 23, 2010 12:25pm
Little B didn't end up getting an MRI yesterday due to a software problem with the MRI machines -- all the machines went down simultaneously. In any case, we kept him as happy as possible (while still being monitored). Mimi, Hea, Big A and Nicole all came for nice visits.
While I have often been annoyed with Doernbechers during the diagnostic phase of figuring out Little B's issues, I am amazed at the pediatric neurosurgeons and pediatric oncologists that we are meeting. We met our "team" yesterday. The pediatric neurosurgeon is the department head, and has been here for 11 years -- Dr. S. The oncologist is also the department head for his group. Both nice enough, but more importantly very competent people.
Little B is currently in his MRI. We carried him down, and all the way he was waving and talking to people. He saw an exit to the outside and rather frantically started pointing at it as if to say, "Get me the he** out of here, mama!" Poor kid. In any case, they are scanning his spine because the placement of the tumor in his brain is in/near a "river" spinal fluid, which means that some of the tumor could have broken off and travelled to his spine. We're seriously hoping that in fact has not happened and we're just dealing with one discreet tumor (I'm not sure why, but it seems like that should be easier to treat -- at least I hope so!).
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