Its so good to write all of this down because it's amazing how much I forget with such little time!
Really Really Quick Minimal Update:
So it was a year ago this past October that Scott was diagnosed with a brainstem ganglioglioma and underwent a risky surgery for a biopsy.
Afterwards he got MRIs taken every 3 months and then this last one he was able to go 6 months. Overall the tumor hasn't shown any real growth although sometimes there is argument between the radiologist's measurements and the naked eye. It's really hard to measure exactly the same every time because of it's odd shape, but overall there hasn't been much if any change. Which is great. The game plan for now is MRIs every 6 months for 2-3 years and then go from there yearly if it continues not to grow.
Scott is doing great, the smartest kid in his class (says his Mom), and doesn't have any real side effects minus not being very coordinated (per usual), occasional headaches and a dizzy spell here and there. Very blessed. That's the basics.
Full Version: It's a Novel, you have been warned and don't need to read on
(But this is our family journal so it needs to be written or I will forget)
On January 5th we went down to Primary Children's Hospital again for his scheduled MRI. This one was a 6 month stretch and so we were all nervous wrecks wondering what had gone on in those 6 months. The others were only 3 months so we watched a little more. MRI went great- Scott is always super great for the MRIs, he just hates the needles for the IV. He has to get IVs every time because most of his tumor only shows up with the contrast. Right after the MRI we went do the neurosurgeons office to go over the scans. Scott per usual was very optimistic that the scans would show it either shrank or was completely gone. He is usually bopping around and giddy in the office waiting which is really sad to watch it go the other direction once he sees the scans. Sad.
So this time we were to meet our newly appointed doctor. Our neurosurgeon whom we loved and took such good care of Scott moved to Canada. So we asked for the neurosurgeon who was brought in as a second opinion when his biopsy got really messy. We figured that way he has at least seen the tumor in person rather than just a scan. Well, after we waited an hour (not uncommon... these guys are busy) he bursts in and tells Scott "Oh you are so big since last time we met". Scott looks confused and I'm like, "um...you have never met him before!" Oh boy...big apologies and nervous handshakes after that from the doctor. And then he pulls up Scotts scans and is asking, "Now what kind of tumor is this?" "Now what grade?" etc. I was raging inside. He didn't even take the time to go over Scott's case. When I told him he went into the biopsy as a second opinion he seemed to remember, not that I trusted him at all at this point. He barely looked at Scott, and never gave him a physical. The other doctor always did a physical just to make sure all of his muscle strength is still there, incision site looks good, etc. So this surgeon pulled up the scans and said it didn't grow, although the radiologist reports that it grew 2 mm in one direction and 3 mm in another. (He read us this from the report)
Okay?? Do you see how these appointments are always so hard? He then asks us what oncology had to say and we told him that we have never been able to get in with oncology because its a low grade tumor. So he sent a referral to oncology and that was that.
I don't think I talked much the rest of the day. VERY disappointing visit.
Then oncology called and set up an appointment with us and we met yesterday.This was a huge surprise. Our other surgeon pleaded Scott's case with the board and at the time they said they wouldn't look at him because it was low grade. I guess having a years time to really watch this tumor and see what it's doing made a huge difference. So now they were wanting to see us. We went in just to get information and to get a second opinion on our "game plan". Just wanting to make sure we are doing the right thing by not doing anything at all aside monitoring its growth. So the oncologist came in and told us that the newly appointed neurosurgeon (whom we really weren't impressed with), the head of neurosurgery, the radiologist, and herself (the oncologist) all met on Tuesday the day before the appointment and went over Scott's case. They pulled up all 7 or so of the scans Scott has had and were able to talk about and discuss his case. Huge! I had been praying like crazy all week after having such a horrible experience with the surgeon, that this oncologist would really study Scott and really understand his case and what's best for him. So that was a huge relief right there. Tender Mercy. So there's always some disagreements on whether or not his tumor is growing because like I said before it's so odd shaped. And it's hard to measure exactly the same every time even with it being the same radiologist. So some may argue that it had grown. "Subtle interval growth" is what the reports say. But the oncologist said when they pulled up all the scans side by side you can't really argue any growth- there's not much change if any at all across the board. So that's good. I would say that's absolutely fantastic, but we are so use to them being so wishy washy about growth that it's hard to get too excited over what they say.
Besides giving Scott a full physical and going over all the history, she basically talked to us for an hour or so just giving us all the information she has. She is an oncologist for brain tumors. They have several oncologists at the hospital and they all have a specialty whether it's leukemia, certain tumors, blood cancers, etc. Brain tumors are her specialty and so she really knows her stuff. It was great. She talked to us about radiation and about chemotherapy to treat brain tumors. Radiation is really scary stuff. Totally off the table for Scott and for most kids. Because they are still growing and radiation kills the growing cells, it's really dangerous and has severe effects. Unless you are an adult and done growing, or unless you're life expectancy is decreasing and in that case you would want to live with the effects rather than not live at all. So it's for dying children and for adults with malignant tumors basically. Since Scott's brain tumor is in the very very center of his brainstem, any kind of radiation would kill everything in it's path to the tumor. And we are talking brain matter here, so that's not good. It would have adverse effects on him intellectually among other things. We asked about proton therapy too. They are doing this in just a few places around the country and she said that they have referred some patients to these places, but it doesn't work for a lot of patients hence the reason its not all over the country. Where traditional radiation kills everything in the path to the tumor, the proton therapy does less damage in it's path and concentrates all it's energy to a focal point. Same adverse effects even though it's more minimal, so again it's not a good idea for growing children. So that leaves chemotherapy which is the go-to therapy for most tumors benign and malignant for kids because it's the safest over the alternatives. Chemo will stop the growth of the tumor, and in some cases it will shrink the tumor. We have to always be weighing out side effects from treatment over how the tumor is effecting him at the time in his life. For now where Scott's tumor isn't growing much if at all and his life is pretty much un-effected by the tumor, it doesn't make sense to start chemo. But it is the 1st step to take if it does start to grow. We could never rely on surgery. Too risky. Our loved doctor we had before told us, "IF I were to die tomorrow in a car accident, don't let any surgeon near Scott. All the surgeons are going to be cocky and look at his scans and say 'I can get that'. But I'm here to tell you that it's not going to happen." ...(something along those lines). That's big because he has seen the tumor in person and knows how complicated it is. It's not as pretty as the scans show, and I still remember them all being very confident they could remove half the tumor until they were in there and they barely got out a pinch for biopsy without paralyzing Scott or even worse.
So then the oncologist told us she would absolutely love to take Scott as a patient and for him to do all his MRIs and appointments under her care. Answer to prayers right there. We were delighted to have her do that. (And she didn't even know about the bad experience we had with the new neurosurgeon!) The surgeons and oncologists and radiologists still all meet together to go over patients, but this way Scott would be seen by her for his visits. Makes total sense. If we aren't ever wanting Scott to do another surgery, then it doesn't really make sense to be seen by a neurosurgeon for his care. They have a certain mindset for sure that is surgery driven. If Scott ever did need another surgery its easy to be referred back to a neurosurgeon. But if the game plan is to start chemo if the tumor grows, oncology is where we should be. And being that this is an extremely rare tumor and almost unheard of to be in the brainstem, I'm sure she is excited to study his case.
We also talked a lot about what kind of changes Scott would have if the tumor does grow. This is important because some of these situations might not be able to be reversed if he isn't seen right away. So we have to be looking out for these things. Scott will probably never get seizures because of where his tumor is located. But because it's in the center of his brainstem there are like a million things that could be effected. She did say that some of the tumor is hanging out of the brainstem so if that part was to grow there wouldn't be much change/effects in him. But if it grew into the brainstem more than it already is, then like I said- lots of things could be effected. Anything from him loosing muscle strength in one or both sides of his body, loosing coordination and big things like that, to anything involving your senses like loosing his eyesight, hearing or swallowing capabilities. Lots of different things. So we would hope to catch these things in an MRI before he would have any of these symptoms- hense the MRIs every 6 months for fairly long term. We will keep doing that for a few more years and if he is in the clear by then, he can go just once a year.
So after this appointment we were feeling very hopeful. At least we now have someone on our side who does a ton of research in brain tumors and is willing to do her homework on Scott's specific case as well. It gets absolutely exhausting to hear everyone's opinions. Everyone has a fix, diet fix, cure, or something that has worked for someone they knows tumor. I would say no 2 tumors are alike, and we have no tumors on record to compare Scott's to so it doesn't really help to listen to everyone give their two sense. I know that sounds mean, but it truly is exhausting to listen to over and over again. Prayers are always welcome, and we have definitely been carried along by the prayers of others. Other than prayer, we just listen to what the doctors have to say from the many years of experience they have had seeing these similar things in children and we just try to have a positive attitude and take it one day at a time. We are so blessed that Scott is doing so great and that he is so smart and seems unaffected by the tumor at this time. The oncologist said that too. She said something to the effect of "You are at that point where yeah, there's something in there that shouldn't be there and that's scary, but it's not harming him right now." And so as hard as it is for parents to not think about the future- that's kind of what we have to do. Just take each year we get, pray a lot, and just stay positive and have faith and hope. Lots and lots of hope.
