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!

Saturday, November 29, 2008

pathology results

One of the oncologists came to our room a little bit ago to share the news from the lab--she hadn't even told the neurosurgeons yet and looked like she had practically jogged in. The news: Aidyn does have cancer, but it's a lower grade and less aggressive. If you want the technical name, it's a pilocytic astrocytoma. This means a.) the operation could have killed it enough, and b.) if needed, lighter chemo is usually very effective.

They have a weekly "tumor meeting" on Wednesdays with all the specialists and will be discussing then what the best post-op treatment plan for Aidyn will be. We were grateful to hear results today, this was a quick turnaround and another answer to prayer.

It is so surreal to say, "Aidyn has cancer"... on Monday morning it was simply, "Aidyn's right hand is a bit weaker." Even so, everyone agrees that things this week have gone very well. First, the surgeons were very encouraged by the surgery and did no neurological damage (amazing when you look at that MRI!). Second, this lab result is about as good as you can get while still talking about cancer. The oncologist said a different result would have meant "a very different kind of conversation" today. Yikes. And thank you, again, Lord.

After Wednesday we should know a lot more about what our next few weeks and months (and years?) will look like. Our next goal: get home. Thanks for continuing to pray for us!

Monday's MRI

Don't mean to gross anyone out, but here is the tumor they found on Monday... I made it small so you don't have to see much if you don't want to. But if you do want to, you should be able to click the image to make it bigger.

The tumor is the darker, bean-shaped mass inside the top of her spinal cord and just below the brain stem. The big dark void where her mouth/teeth would be is because her braces distorted the magnetic imaging.

Friday, November 28, 2008

The Latest

Just a quick update...

After another MRI today, it looks like 70-80% of the tumor was removed. Taking out more could have been dangerous, so the doctors were pleased with the results.

The doctors are still waiting for the full pathology reports to determine how to treat what's left.

Let's keep praying that these reports come back that the tumor is benign!

Aidyn might be up for visitors on Saturday afternoon, but is still taking things hour by hour. If you want to visit, you might call first to see if it's a good time.

Thanks again for your love and prayers!

Thursday, November 27, 2008

We are thankful for...

A pediatrician who took us seriously the first time, consulted neurosurgeons, gave us his cell phone number, made things happen at Children's on Monday, checked in frequently, and prayed for us.

A MRI tech who called neurosurgeons before the tests were even done.

A good hospital.

Grandparents who meet you in the lobby of the hospital and keep your kids laughing while you freak out.

Friends who will pick up our other daughter from school and spoil her as long as needed.

Friends who will adopt our dog for as long as needed.

Grandparents and family who will drop everything (and some cash) and fly here to be with us.

For dozens of people gathering to pray for Aidyn the night before surgery.

For dozens of people who came to the hospital and prayed during surgery. Picture about 15 people, on their knees (not kidding), in a big circle outside of surgery waiting, interceding for Aidyn.

For the hundreds of people across the country we know and don't know who have been praying this week.

That the tumor "presented itself" to the surgeons. No searching around a twisted spinal cord needed.

That the tumor was firmer than they expected, which means it probably has been growing slowly and is less aggressive. Seemed like a bit of a surprise to the surgeons.

For hugs that last longer than normal.

For friends' tears--not because of sentiment, or for us, but because they deeply love Aidyn.

For movement and breathing in recovery.

For neursurgeons (several) who stopped by often and have taken the time to answer all of our questions (some more than once).

For connections with a couple of the nurses here (friends of friends).

That Gary & Ann know personally the pediatric neuro pathologist who will be studying Aidyn's tumor over the next few days.

For a God who has been patient with our wrestling with Him... gracious to our daughter... and understanding that our love of Him is not always as unconditional as it should be.

And most recently... for hand-delivered Thanksgiving leftovers!

a quick update

Aidyn was released from ICU today and is in a normal room. She's doing well and is impressing nurses, doctors, and us with her right-side movement, especially her right hand. But she's also really sore and in a good amount of pain around her neck and hear. All normal we're told. She complains little, though, and so we have to look for the signs... like a few tears rolling down her cheeks (ugh).

Tomorrow will probably involve a post-op MRI, assessing any therapy needs, and waiting for news from pathology. If we hear from pathology Friday evening, it would be ridiculously quick. More likely it will be sometime next week. We're praying for more good news. Thanks for praying with us and for the many, many messages and ways you've loved us.

Recovery: on the fast track

Aidyn is doing very well this morning and we have a lot to be thankful for on this Thanksgiving day!

  • Aidyn will likely move out of the ICU into a "regular" room sometime this evening
  • All of the tubes (catheter, arterial line, IV, etc.) will likely come out this evening
  • Aidyn's grip and strength in her right hand is as strong as it was pre-operation -- if not maybe even a little stronger!
  • The doctors anticipate that Aidyn might be able to come home late in the day on Sunday!
Today the Wooleys are having a special Thanksgiving lunch provided by the hospital, and some friends are bringing a Thanksgiving dinner to the hospital in the evening.  Since Aidyn will still be in the ICU today, the Wooleys have asked for no visitors today please.

Tomorrow (Friday), Aidyn will have a number of post-op scans and tests: MRI, CT, etc. to try to determine exactly how much of the tumor was removed and exactly how of the tumor is still in her spine.  The day will be filled with meetings with doctors and specialists and determining next steps.  Because there will be so much movement and so many meetings tomorrow, it will not be a good time for visitors during the day.

The Wooleys anticipate that tomorrow evening will be the first good time for visitors.  We will update this blog with the official word on visitors sometime tomorrow.

They know you are dying to love on her (and them!) in person, so thanks for your patience:)

Prayer requests:
  • Aidyn is having a lot of pain (normal for this recovery) in the back of her neck where the surgeons cut the vertebrae.  Pray that the pain meds would be powerful and effective and not cause nausea.
  • That the scans and tests would reveal that the tumor is 100% gone!  Pray for a miraculous report that the tumor has been eradicated.
  • That the pathology report (expected on Monday or Tuesday) would reveal that the tumor was benign / non-malignant
  • That the physical therapy (expected to start tomorrow) would be easy and that Aidyn's strength on her right side would return quickly.

"Give thanks to the Lord for he is good.
His love endures forever.
Give thanks to the God of gods.
His love endures forever.
Give thanks to the Lord of lords.
His love endures forever.
To the One who remembered us in our low estate.
His love endures forever.
And freed us from our enemies.
His love endures forever.
And who gives food to every creature.
His love endures forever.
Give thanks to the God of heaven.
His love endures forever."
-- Psalm 136:1-3, 23-26

Wednesday, November 26, 2008

Aidyn says "hi"

There's so much we want to say... but are too tired tonight. Most of all, thank you. Thank you Jesus for extending your grace and mercy to our daughter's health today. We still need it. And thank you all for interceding for Aidyn and us today (and our families... and surgeons... and doctors...). We still need it.

Aidyn wants to say "hi"...

Thanksgiving Eve

I Chronicles 16:34
Give thanks to the Lord, for He is good. His love endures forever.

Aidyn is out of surgery now and things could not have gone better!  Praise the Lord!

She is awake and is recovering in the Intensive Care Unit.  Aidyn will be in the ICU for the full day on Thanksgiving and will not be able to have visitors other than family -- and only 3 people at a time.  Her stay in the ICU is completely normal as part of the recovery from the surgery today.

She is able to move both arms, squeeze both hands, move both legs, etc.  In short, the surgeons removed 70% - 85% of the tumor, but did not touch the spinal cord.  Aidyn has full range of motion!

There was an army of prayer warriors at the hospital today and many more praying throughout the country.  Thank you!

Tonight the Wooleys are enjoying some family time with Matt's parents, Kristin's parents, and Matt's brother.  No visitors tonight please.  This is really the first time since the diagnosis for the family to be together and process a bit.

Moving forward, we still covet your prayers and praises.

*the tumor was situated in such a way that the surgeons could easily access it.
* the spinal cord was not damaged during the surgery
* Aidyn came out of the anesthesia well (recognizing family, movement, etc.)

Prayer Requests
*that the pathology would reveal the tumor is benign / non-malignant
*that the remaining 15% - 30% of the tumor would disappear on its own

We are humbled to serve and be loved by such an amazing God! 

More Than We Ask or Imagine

After three-and-a-half hours of surgery, the doctors gave a report that is the first encouragement we have had in a few days.

The short story is that they were able to get 85% of the tumor removed. Apparently, the tumor was 'ready and waiting', meaning it had popped up so to speak and was more easily accessible than they thought.

At first glance, they believe it is either low grade, non-aggressive cancer and even likely benign! They are pretty confident that with low chemotherapy, they will be able to knock it out all together. Wow! Matt said it seemed that the doctors were surprised. We, however, were not. :)

This is all the neuro surgeon's "best guess" (with Aidyn currently still in surgery), but he was optimistic.

Please continue praying that as they wrap the surgery up (should be done by 1pm or so), that Aidyn will come out of it well with no neurological effects. The doctors are pretty confident that there were no further physical impairments, but they won't know for sure until she is awake and able to move her hands, etc.

We are praising God! Matt and Kristin have been deeply loved and encouraged by the many people who've been in and out of the waiting room as well as the many who have been praying at home.

"Thank you" doesn't seem adequate, but "thank you!!!"

Ephesians 3:20-21

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Tuesday, November 25, 2008

A Little Background...

Thanks for stopping by to check on Aidyn and know how you can pray for her. 

Matt, Kristin, Aidyn, and Alissa, along with their extended families, are on a journey they didn't imagine only a few days ago.

Their hearts' desire is to communicate with everyone they love, ask for prayers, and share God's comfort and sovereignty.

They'll take over the blog updates when they're able, but for now, I'll try to articulate on their behalf as best I can. Honestly, that feels overwhelming, but here goes...

For a few weeks, Matt and Kristin noticed that Aidyn's right hand was weaker than the left, and about a week ago, noticed her foot was dragging around a bit.

They called their pediatrician and met with him last Friday. He consulted with a pediatric neurosurgeon and he scheduled an MRI for Monday. Based on the results of a couple of MRI's, they were admitted to Children's Hospital that afternoon.

After consulting with pediatric neurosurgeons, a neuro oncologist, and a few other "neuro" titles, it was determined that Aidyn has a tumor in her spinal cord. It is at the top, near the base of her brain stem.

Obviously, those words and diagnosis carry more weight than is comprehensible. Matt and Kristin are doing their best to digest this information, move forward with the doctor's plan, and bathe every detail in prayer.

The tumor is located precariously in the spinal column, so the location makes the surgery very intricate. The surgery is scheduled for Wednesday, November 26, at 8 a.m. and is expected to last four or five hours.

Additionally, the doctors are expecting the tumor to be cancerous, based on early screenings. They will biopsy it during surgery, but won't have full pathology results until later this weekend.

At that point they will know what exactly it is, what follow-up surgeries, chemo, etc. are necessary.

The philosophy of Children's Hospital is that the kids get to know as much as they would like. Aidyn sat in while the doctors went through some details, but opted out as more details unfolded. She is scared and loving the attention all at the same time.

So for now, please pray...

*That the surgery to remove the tumor will go as well as possible, without complications.

*That the biopsy results will come quickly and be conclusive.

*For Aidyn, that she will have peace and strength.

*For Matt and Kristin, Alissa, and their families...pray they will be able to rest at night, both emotionally and physically. (Kristin's parents are in town from California.)

*That they will feel supported, encouraged, loved, and have peace that transcends all understanding.

"Let us boldly approach the throne of grace, so that we may receive mercy and find grace to help us in our time of need." Hebrew 4 :16