Monday, January 28, 2008

HURRY UP...............and wait..........

On Thursday of this week we met with our new oncologist, Dr.Lemons. The good news is that both Matt and I really liked him. He seemed very knowledgeable and, most importantly, spent almost an hour explaining lots of stuff about Matt's tumor. We learned that the tumor is made up of several different tissue types. Parts of it are solid tumor, parts are cystic, parts are more liquid-y, etc.... So, we got a little lesson in viewing scans and reading radiology reports. This was so helpful! Of course, if I had thought about it, Pilomyxoid sort of implies a mixed sort of tumor. I also asked him to reassure me that even though the last report from radiology said 'overall tumor growth' that we weren't concerned! He was concerned, so he wanted Matt to get another MRI ASAP. They couldn't squeeze Matt in for an MRI on Thursday, but had a space Friday afternoon, so we took it. On Friday we drove down again and they did a 'quickie' MRI of his brain, but no spine. Because it was a 'quick' MRI, we decided to let Matt attempt it without sedation. He did great! It was so nice to not have to go through the routine of sedation. He has to go through same-day surgery when sedated, and that place is always a zoo! This was much nicer. The tech came out to speak with us afterwards and he suggested we break the MRI's up into 2 different days (one day brain, one day spine) so Matt wouldn't have to be sedated. I look forward to trying that plan at the next MRI. After the MRI, we went and had lunch in the cafeteria and then went up to oncology to hear the report on the MRI. I was disappointed to learn that we are still not sure the tumor is stabilizing. The neuro-radiologist believes that the tumor is still slowly growing. This is a very difficult thing to tell on Matthew because of the nature of his tumor. Since it is impossible to, say, weigh it to see if it has increased in mass, you just have to tell the best you can through MRI's. With all the different tissues in the tumor, it changes a lot - which can look like it's growing or shrinking, when it's really just a little bit different than it was on the previous MRI. So, the new plan is to send the scans and things back to Dr.Cohen (the doctor at John's Hopkins who did the 2nd opinion) and see if their tumor board has any thoughts. Dr.Lemons was also considering sending the scans and reports to someone he knows at UCLA. Hopefully, with these 3 opinions, we will get a better sense of where to go next.

I also had the chance to talk with the neuro-psychologist who evaluated Matthew several months ago. I've been worried about Matt because we've been seeing some anxiety issues pop up. For instance, Matt is extremely obsessive about his homework. He will tell you 47 million times that his homework needs to be signed. It's like he becomes fixated on certain things and he can't relax about them. The thing that really concerned me, though, was an experience Matt had with Jake. Matt was playing with Jake and was putting his glasses on Jake. Somehow, the glasses poked Jake in the eye. When Matt was telling me what happened, he was very upset and crying. I went in to look at Jake and found no evidence of any injury. Jake was just smiling and cooing and happy to see us. I reassured Matt that Jake was just fine and that he shouldn't worry about it. However, Matt has continued to dwell on this incident, telling everyone what happened, etc.... My mommy 'red flags' were raised when Matt told me that sometimes at school he would be doing his work and suddenly remember what he did to Jake. He said, "mom, I just imagine holding him, and then I accidentally poke him, and then he starts to fall apart in my arms and everything is all bloody." Okay, so that just doesn't sound healthy! I am worried about him feeling anxiety over nothing! After talking to Dr.Colte (the neuro-psychologist) I feel better, though. He thinks that this may be something Matt will get over, as well, as he heals further. We are going to watch him carefully and if things start to get really bad we'll go see a neurologist and also a child psychiatrist who might be able to help him with medication. Dr.Colte didn't think it sounded like an anxiety disorder at this point.

Okay, so I think you are all officially updated on Matt. :-) I'll keep you posted when we find out something from those other doctors!

-Alli

7 comments:

Slim Pickins said...

thank-you so much for taking the time to update us! we are praying and thinking of you all the time. what a wonderful mommy you are to recognize flags & ask doctors about it. it's important. you're doing an amazing job with the many roles you have. i love you, courtney

EmilyCC said...

What would doctors do without smart moms? Look how on top of it you are!

Katie said...

I hope that Matt feels better soon----in all aspects! Poor guy. I'll say an extra prayer for him.

Dan and Dee said...

Alli you are a rock! What would doctors do without smart moms like you. My boys are still keeping Matt in their prayers. Hope I can see you again soon.
Dee

Burton Family said...

You are so awesome!! We still keep all of you in our prayers. Even the ones that bless the food. Keep up the good work. You are his best advocate-and you are doing such a wonderful job!! We love you all.
Cristy

Deborah said...

I'm glad to hear your new primary doctor is so thorough and willing to spend time explaining things. It's got to be so much nicer to have some sort of an understanding of what's going on. Good luck with the second and maybe third opinions. We'll keep you guys in our prayers.

Polly said...

It's so nice to hear an update. It sounds like you have some great doctors who are working hard for you now. Our thoughts are with you!