Spent the night in the ER

He felt like he might have a seizure last night, so he went to the ER last night. A CAT scan shows things being about the same, but his brain is still swelling. They have increased his medications, and that has the swelling down again. This time, he felt something in his tongue and lips, but he never felt any muscle control problems, and his speech wasn't affected. He could feel pressure in his head.

This has accelerated the process with MD Anderson. They need to take another MRI in Arkansas, and then send all the scans plus a sample of the tissue extracted during surgery to MD Anderson. It looks like we might have an appointment by Tuesday at earliest even then.

He and his Mom are still at the hospital. I didn't talk with Tony, but his Mom is having a hard time with this. I plan to leave this weekend to go to Arkansas.

Still waiting...

If they haven't heard from MD Anderson by Friday, they are to contact the local doctor in Arkansas. The doctor has been in contact with MD Anderson; it is just a matter of waiting for an appointment.

He and Mom plan to be in Fayetteville where they have access to a doctor until they are assigned a doctor and appointment in Houston.

Waiting...

Still just waiting for an appointment in Houston. Long car rides, continual noise, and loud talking bring on a headache, but he feels fine other than that. He and his Mom are back in Fayetteville. He is ready to get to Houston and get started on whatever needs to be done.

Still waiting...in Owasso for now.

He and his Mom are in Owasso, OK for the weekend to watch a marching band competition. There is no news yet on when they might go to Houston. He still feels headaches coming on when he gets active, but keeps them away with some pain medication he was given.

His Mom says you wouldn't be able to tell he was sick if you didn't know.

No change

No change in news today. Just killing time in a hotel room. He didn't sleep well last night because the staggered timing of medication had him up until about midnight, then reawakened at 2AM for the final salvo. That isn't a very convenient routine, but it should be over after tomorrow.

Out of the hospital, and feeling good

Tony and his Mom are in a hotel tonight. With steroids controlling the swelling he acts, looks, and feels like nothing is wrong. He is on his computer gaming and chatting with friends.

Maybe not a tumor?

The doctors have conferred, and the prognosis has changed somewhat. The last doctor apologizes for "hitting the panic button" as he put it. The latest explanation is that this kind of brain swelling does commonly occur 3-9 months after radiation treatment. So just because there is swelling doesn't mean there is a tumor. However; the doctor does think there is some tumor mixed in with the post-operative healing (scar tissue) and radiation damage.

The plan is still to send him to MD Anderson. The expectation is that he will undergo a 'fancy' MRI that can distinguish scar tissue from tumor from radiation damage, etc. Basically, it should show exactly what is going on.

Your thoughts and prayers are still needed and appreciated...maybe they can turn this panic-button into good news down the road.

Sorry about the ups and downs on this. Sometimes I wonder if I should wait to post news and in that way even out the ride a bit.

He is feeling better

His Mom is with him now. He feels better now that he has been given steroids to knock down the swelling in his brain. He seems to turning more positive emotionally, but still isn't up to visitors. He is glad his Mom is there.

He wasn't surprised too much by news of the tumor coming back. He knew he didn't feel right again after he had felt good most of the summer, but the doctor kept telling him this is 'normal' and part of the healing process.

Clarifications

The MD Anderson Tony will go to is in Houston, TX. Hopefully he will have his surgery within two weeks. The doctor is recommending him for experimental post-surgical treatment since the tumor has overcome the standard treatments.

He has been withdrawn from school for this semester at least.

The tumor is back

The neurosurgeon says the tumor has grown back aggressively and is about 4x4 cm. He also sees significant swelling, and doesn't know why the other doctors haven't seen it. He is getting Tony an appointment with MD Anderson and says he will need surgery (the tumor is deeper in the brain this time) and probably needs to get in an experimental program. Sherri is leaving tonight to be with Tony. Tony is staying in the hospital. Sherri's parents are there. So is Randi.

I don't know anything else.

Headaches still

Tony continues to have headaches frequently, but they are in different spots instead of always in the same spot like before. He has also had 2 or 3 times when he thought a seizure was coming on, but it did not. All of this is since the increase in his anti-seizure medication.


He is seeing the neurosurgeon tomorrow to talk about what is going on.

Update from the Neurologist

The Neurologist says the proprioception event over the weekend isn't a surprise. The medication he is on takes time to ramp up when dosage changes, and it wouldn't have ramped up enough to have had any real effect yet. It will be a week or two before the increased dosage is fully functioning. He also said Tony's headache isn't unusual considering the time since his surgery and the significant increase in activity that college demands.

Some symptoms over the weekend

Tony said he had another brief episode of proprioception (what I was calling numbness) in his right arm on Friday, and a headache over the weekend. We have encouraged him to contact the doctor again.

Some clarifications for the better

The mixed interpretation of the MRI results has a little more explanation, and it makes us feel better too. The first radiologist saw nothing out of normal. A second pointed out some thickening of the brightness area around the surgery site. This could be tumor growth, but most likely is post-surgical changes and healing. As the tumor dies, it attracts the MRI contrast dye, and creates a bright spot similar to the way a tumor looks. That means we have something to keep an eye on, but it doesn't mean there is a problem.

The doctor said this is all normal, and something we will be dealing with for a long time. That is why he puts so much emphasis on seeing the patient on a regular basis. He can tell which way to read the MRI by looking at and visiting with a patient. He sees nothing but good health in his visits with Tony.

So I think we can take this as good news overall.

Back down from this morning's high

Tony got a call from the doctor after his appointment today. They want to schedule a followup MRI in six weeks because, after the appointment, someone (don't know who) saw something (don't know what) in the MRI that they want to keep an eye on. It could be anything including just post-operative changes in the brain as it heals, but it still needs watching.

Tony's Mom spoke with him, and he sounds okay with it, but it is kind of a shame...he was very concerned before the appointment, elated after, and probably somewhere back toward concerned again now. But I think there will be a little bit of concern always.

Great news!

The MRI results looked perfect. Nothing new...nothing growing. The doctor suspects the numbness is caused by drinking so much water as part of marching band, that it is diluting his anti-seizure medication. They have increased his medication level, and all is expected to be fine.

Thank you again for your prayers.

Results not until Tuesday

He had the MRI today, and will get results from his doctor at 9AM CST Tuesday.

He would like to go to the football game in Little Rock this weekend, but needs a ride since he missed the bus due to his MRI appointment. He could march in the pregame show, but not at half time. He missed a couple of practices while on chemo and he missed a couple of practices while setting up and getting his MRI appointment, so he doesn't know the half-time routine well enough. Marching didn't mix well with the chemo near the end of the week.

Something to worry over...

His right arm went a bit numb yesterday during church and last Wednesday during church. His scheduled MRI has been moved up to tomorrow at noon.

If you are willing, we would appreciate some prayers that this turns out not to be serious.