Thursday, July 2, 2009

MRI #2

Today was our second quarterly follow-up MRI, to monitor the tumor size and/or behavior. The pictures looked really good and the neuro oncologist was "very pleased" and said the tumor and area seemed "stable." Yeah!

One nurse practitioner measured the width of Aidyn's spinal cord on screen and compared it with the last MRI (from March), and said it actually might be a little smaller now--which is great.
They also inject contrast to highlight the material of the tumor, and the contrast doesn't really seem even to show up anymore. Our understanding is that's great too!

Our next MRI will be in the fall, and Aidyn will officially be a middle schooler (this picture is from her 5th grade Continuation in June).

We're praising God for Aidyn's progress and for these good reports!

Monday, April 27, 2009

My Memory Essay

Here's a recent assignment Aidyn did for school...

My Memory Essay

Around Thanksgiving and Christmas was a hard time. I was in the hospital having surgery, shots, M.R.Is, doctors saying words that you have to be older then 35 to understand and really smart, pretty nurses, and a whole lot of family and friends.

There are so many things that remind me of this as you can imagine but I’ve had to narrow it down to three. The first is…. Wires. The disgusting, long, black, skinny wires. Now you might think that’s not so bad but let me show you what I’m up against: 1 catheter, at least 3 I.V.s, 3 heart rate wires that only let you turn 90 degrees and beep whenever you start to fall asleep, and more. Every time I see a stinken wire I don’t let it get near me but sometimes that’s a little hard. When ever I see a wire I gasp have a flash back and step away.

Another memory is the children’s hospital mascot, the little blue boy holding the balloons. He’s not as bad but still. The most annoying thing is that when I was there it was the 100th anniversary so that little kid was everywhere. Newspapers, bulletin boards, and even my milk carton. But what really stinks is my mom got my sister one of those things nurses keep their I.D. badges on and the little blue boy with the 3 balloons is on it.

The one good memory is my prayer tree. My prayer tree is a little fake Christmas tree with some verses and sayings on it. Ever time I look at it I remember all my family and friends that really were there. I had my Grandparents from California, my uncle from North Carolina, people I didn’t even now. Plus I had a visitor everyday.

It just goes to show how much people care and love me. And that I have friends and family who go out of their way to do so. It also shows not to forget your memories even the bad ones because they lead to good memories that no one wants to ever lose.

Wednesday, March 18, 2009

MRI #1

Okay, so today wasn't technically MRI #1 since we had several before/after surgery last November. But this was our first follow-up MRI that sets our "baseline" for future MRIs. They will be watching for growth from this point forward.

Anyway... today went really well!

The test went smoothly and Aidyn did great. The doctor said that the tumor and spinal cord looked very good. From a layman's perspective I would say things actually looked better. Her spinal cord was still a little thicker in that area but you couldn't really see the remaining post-op tumor material like you could before.

Thanks so much for praying for us! We weren't really nervous about today's visits (although Aidyn was a little nervous about getting in the MRI tube again), but today did bring back some of the crazy memories and intense feelings we had during Thanksgiving week. Can you have memories of feelings, or do they just become current feelings? Don't analyze that too much! Bottom line: we've really appreciated your prayers today.

We go back for another MRI in three months. And we're praying that what's left of the tumor just disintegrates. God is good.

Tuesday, March 10, 2009

Our first follow-up MRI

It's been a while since we've posted anything because, gratefully, there hasn't been much to report. In this case no news has been good news!

The new news is that our first follow-up MRI has been scheduled for Wednesday, March 18. It's been a little over three months since Aidyn's surgery and they want to keep a close eye on any tumor growth.

We've been praying for more than no growth; we've been praying for the thing to go away! We're also praying that Aidyn will be emotionally ready for a trip back to Children's Hospital and into the MRI tube again.

We should be able to meet with the neuro-oncologist after the MRI to get a report. We'll let you know what he says. Thanks for praying along with us!

Monday, December 15, 2008

Looking Ahead

We had a couple more appointments last Friday at the hospital, and both went very well. The neurosurgeon gave the okay for almost all the rides at Disneyland for Aidyn! He said maybe not the ones with major G-forces, like Space Mountain or the big coasters. So Aidyn will have to miss out on a few of her favorite rides (she's a coaster junkie) but is still really looking forward to our trip.

We didn't really learn much new from this appointment and the surgeon was, again, very encouraged by how well she was doing. The fact that there was no neurological damage that we can find--not even a little numbness--is absolutely amazing. We had good surgeons and we have a great God!

The other appointment we had was with financial aid at Children's Hospital. We are waiting for a final approval today but were very encouraged.

Looking ahead, there's not going to be much new to report in the next few months until Aidyn's next MRI in late Feb. Until then, we'd once again be grateful for your intercession. Here's what we are praying for...
  • That this tumor stops growing and simply dissolves. This would mean no chemo!
  • That Aidyn's right side would continue to strengthen as we do our own physical therapy at home.
  • That the hospital and insurance company would play nice and work out all the bills. We are asking for God's provision and grace with what's left over.
Thank you for walking this journey with us! We feel loved.

Thursday, December 11, 2008

Post-Op Treatment

We got back just a little while ago from meeting with the neuro-oncologist and are very encouraged by what we heard. The short story is that they are going to take the wait-n-watch approach. That means MRIs every 3 months for a year, then every 6 months until Aidyn is about 18 years old.

The Dr. said that if this tumor were anywhere else in her body (other than head or spine) it would be considered benign. That basically has to do with how much havoc the tumor can wreak on the surrounding area. There's obviously a lot going on at the base of the brain/top of the spine, making Aidyn's tumor malignant. While it is technically "cancer," he suggested we stop using the word regarding Aidyn because it just doesn't accurately define (in most people's minds) what's going on here.

Here are some other things we've learned today...
. This tumor is probably fetal cells that didn't stop growing. Woah.
. There is a "chasm" (the dr.'s word, I think) between this kind of tumor in a juvenile and in an adult. If she were an adult this would be far more serious.
. He said this was a Grade I (the lowest and best) and the chances of transformation to a higher grade are highly unlikely.
. Once Aidyn gets to be about 18, this basically becomes a non-issue. Once she's physically mature, these cells should essentially shut down.
. Most of these tumors are found in the head, not in the spine. That means their numbers/statistics for Aidyn's tumor are a little less firm.
. There is roughly a 50% chance this tumor will grow again (this is where the numbers for spine vs. the head aren't as good).
. If it grows again/enough, they will probably do chemo next.
. If needed, chemo should be very effective and while there are some side effects Aidyn should be able to live a very normal life during the 14-month treatment (with weekly treatments).
. This kind of chemo ain't cheap. In the six figures. Woah.
. There is a 1-2% chance this tumor will just "misbehave"--be difficult, unresponsive, and ultimately life-threatening.

While there are a few caveats and concerns in all this info, this is good news and cause for great rejoicing. Faithful friends and readers, you've been interceding for us and now it's time to give thanks to God! Would you help us do that?! Right now. For real. So many answered prayers--your prayers--and we are so grateful for His mercies on us.

Tomorrow (Friday) we go back to meet with the neuro-surgeon for a follow up visit. We aren't expecting any big news there. The one question on Aidyn's mind, though, for the Dr. tomorrow: When we visit grandma and grandpa over Christmas, can I ride all the roller coasters at Disneyland?

Monday, December 8, 2008

108 hugs

We were all back at church yesterday. On the way home Aidyn said, "my official hug-count was 108 this morning." Apparently she started counting after the first dozen or so. My hunch is that some of those were repeat hugs. Regardless, she is loved and felt it yesterday from our incredible church community. (Younger sister Alissa's hug-count was in the 70s, but I think she got a late start with the official record keeping).

It was good to see Aidyn doing her usual thing on a Sunday morning. A couple times my eye caught her either holding babies or walking with toddlers around the gym--she loves it.

But it all may have been a little much and she was pretty tired last night. So she's enjoying some rest at home today. We'll try a half day at school tomorrow.

We are praying about our Thursday meeting with the oncologist and are eager to hear what the doctors have to say about post-op treatment. They all meet on Wednesday to discuss, so please pray for God's wisdom upon their thinking and decisions. Some in the mix may not recognize God as the source of all wisdom, but we do--even for brilliant, scientific-minded doctors! Thanks for praying with us and for us.