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.

Thursday, December 4, 2008

Back to School

Aidyn had a great first day back at school--she gave it an "A"! We dropped her off early for choir practice, then came back when school started to go with her to class and talk with her classmates about the surgery and the cancer. She was a little shy about being up in front of her class but wanted us to help share the news with everyone all at once. It went pretty well.

Here's one exchange during the "question time":

Girl in class: (hand raised high) My auntie had cancer.
Me (Matt): (...wondering if I missed the question...)
Teacher: Kids, remember this isn't a time to share about yourselves.
Me: (feeling bad for the little girl) So how is your aunt doing now?
Girl: She didn't make it.
Me: (ummm...) I'm really sorry about that.
Me again: You guys know that there are lots of different kinds of cancer, right...?

Ahhh, fifth grade.

Aidyn's teachers, principal, and school nurse have all been great and are making the transition back into school really easy for us all. Of course, we're all lobbying for less make-up homework. We'll see.

Tuesday, December 2, 2008

New normal

Aidyn continues to recover well physically and make great strides. She is less and less sore and seems happier each day. She has been practicing this fall for choir at school and really wants to get back for that and the holiday performances they start next week. We stopped by after school today to see her teachers for a few minutes--she is loved! We are going to try a half day at school this Thursday. Can you believe that's only 8 days after major surgery? That's how well she's doing. But she still needs to grow her stamina so we are taking it slow and doing half days for a little while. And she needs to continue to strengthen her right side in the weeks and months ahead.

People have been kind to ask how we (Matt & Kristin) are doing. I would say that we still look back on last week in disbelief. The shock is wearing off, but there were so many emotions that we just didn't have time to sort out last week. So we still feel a bit drained but find ourselves wanting to get back to "normal." I describe it like we have one foot on the gas and one foot on the brake. The reality is that we are still figuring out what the "new normal" in our lives will look and feel like this week and in the months ahead. We could use an extra supply of God's presence and joy as we process all that.

We are scheduled to see the neuro oncologist at Children's next week on Thursday, 12/11. The team (neuro surgeons & oncologists) will have met the day before to discuss current cases, so when we go in they will be able to give us their suggestion for a post-op treatment plan for the remaining tumor/cancer. We are praying for wisdom for these people as they consider all the options for treatment--that they will pick the best plan to completely cure Aidyn. And we are praying that that won't include more surgery. Ever.

So we are waiting for that appointment and will be trying to figure out the new normal for the Wooley family in the meantime. A simple "thank you" feels rather flimsy, but we are so grateful for your care, encouragement, and ongoing prayers. They sustain us.

PS. If you're willing to intercede for us, the bold stuff above would be great things to be praying for.

Monday, December 1, 2008

We're home!

Aidyn was discharged Sunday afternoon and we are all happy to be home and together again! We kept Alissa out of school today so we could be a family today. Feels good, warts and all.

We came home to a thoroughly cleaned and decorated house. Our fridge was stocked too. We're pinching ourselves. Christmas lights were outside and in, a real tree by the fire, mini trees in each of the girls rooms, decorations all over... it looks amazing. Thank you for this thoughtfulness and the many, many acts of love.

Aidyn would love to see her friends and some smiling faces. The reality, though, is that all of our tanks are sputtering--we have spurts of energy and then nothing. So if you'd like to come by to say "hi" we'd all love it, but it will probably need to be short (like 10 min) for now. And, since it changes hourly, please call first to make sure Aidyn is up for it.

Thanks everyone for continuing to love us and pray for us!