Still strong and symptom free!

Kyle and Nicolas learn a magic trick.

Last week Kyle had his latest check-up with Dr. Olson and the 6th MRI since finishing his radiation treatment last April. It was a day that started with Jell-O squares and chicken broth (he’s only allowed clear liquids until 2 hours prior) closely followed by intense Pokemon battles with Nicolas as the boys played Nintendo DS on the car ride to Seattle. Kyle was excited for root beer smelling “giggle gas” as he drifted off to sleep for the MRI. He woke up to his brother rubbing his head and quietly whispering that he had cereal and milk waiting for him.

That afternoon Kyle had his routine checkup. Dr. Olson tells us Kyle continues to show improved balance and excellent neurological strength. He is still free of any “brain bump” symptoms and the MRI showed that the tumor remains relatively the same. What does it all mean? I wish we knew. The only answers are the ones we feel deep within us: Kyle is strong, he is a fighter, and he is certain he will win.

We also know Kyle is happy. His weekends are filled with basketball games and skiing at Mount Baker. He loves the new bike ramp he got for his birthday from this grammie, grampie, and aunt Issy. Kyle and Nicolas are eager to start working on their science fair projects and are hoping for blue ribbons again this year. We sing out loud in the car to our favorite songs, rock out with papa on Guitar Hero III, and we laugh often. Every day we share together is a blessing.

We hope that each of you reading this can find the same daily joy.

A good friend reminded me that this journey isn’t a sprint to the finish, but more like an iron-man triathlon that demands endurance, strength, hope, and prayers. Thank you for keeping us in your prayers.


Anonymous said...

Happy Belated Birthday!!

Glad to hear you doing well. It
gives hope for other DIPG families.

God Bless You.

Anne-Marie said...

Hi Kylie -

I am so glad that you had a wonderful visit with your Doctors and that they gave you the good news of improved balance coordination. That will no doubt help as you're rippin' it up on the slopes.

Hugs from Anne-Marie and Chris

Kayley Westra said...

Hi Kylie,
I think of you and your family every day. So glad to hear about all the wonderful things going on in your life. Give your mom a big hug for me!
Kayley Westra

Anonymous said...

Congratulations for the wonderful MRI results and for doing so well. Lindsay is going in 2 weeks for her 8 month scan since diagnosis, so we'll be hoping her DIPG will also be stable. You are a few steps ahead of us (and the only other person on Zarnestra that we know of), so you are really giving us hope. Thank you! Best wishes for continued health and happiness!

Anonymous said...

Glad to hear Kyle is strong and stable. What a blessing it is to receive such great news.

Are you doing anything in addition to zarnesta?

May God continue to bless you.