- DIPG - Good news!

[Guest guest]

Hello again,

I want to thank you all for the advise and all your prayers. We received

some positive news about and wanted to share it with you.

The roller coaster ride continues! On Thursday, was seen at her

oncologists office at what they call Neuro. clinic day. She was seen by four

different doctors then she goes to the playroom and we discuss what our options

are. All of these doctors were pretty certain 's tumor was taking the

normal course (aggressive growth). They felt we should start another chemo

right away. They explained time is critical, usually these tumor are very

aggressive. They also suggested having a biopsy and getting a PET scan done. I

was very uneasy about the biopsy, up to this point they have always said the

risks outweigh the benefits. So I agreed to getting a PET scan done. They

insisted we have it done on Friday. The doctors explained this would show us

where the " hot spots " are and how aggressive the tumor is. I questioned, what

if it comes out clear. The doctors looked at each other, it made me feel like

they felt that was very unlikely. They responded, well then we should get the

biopsy to confirm that. So on Friday, August 18th, had the PET scan

done. The radiologist was nice enough to stay late and give us the results. It

would have been a very long weekend if we had to wait.

Anyway to everyone's surprise the scan was clear! The new enhancing area only

contains dead cells. The rest of the tumor is inactive or weak. This is the

best news we have had in awhile. Now we have to focus on getting her body to

break down the dead cells and get rid of them. Dead cells are very irritating

to normal brain tissue. It can cause swelling which in turn can cause symptoms

like double vision, trouble walking, etc. So we must be very careful, hopefully

getting rid of the dead cells before too many die off and create too much

swelling. We have to find a perfect balance. We also must continue to pray

that this tumor stays weak or dormant. We will see 's oncologist on

Tuesday. I am eager to hear what they think of the scan and what they suggest

now. We still have a long road ahead of us but now there is real hope!

continues to make progress everyday. Her hand is almost completely back to

normal. She has full use of her arm and hand. The only thing we still have to

work on is her handwriting. She can do it but it is not as neat as before. She

is having some leg cramps but is walking again. Everyday she walks a little

better than the day before. She is walking with a limp but it's not that bad.

Hopefully we will be able to reduce her steroids soon. This should be possible

as long as she does not develop new or additional swelling. This is such a

delicate time. Please keep the prayers coming!!!!! They are working!!!

With more Hope than normal !

mother of