August a year ago

I have been very tearful this August.  Almost every date from the middle of the month on has significance to me.  I'm so thankful that we are here in August 2012 with all three of our children.  A year ago on August 27th, I did not know if that would be the case.  I am thankful that Reese is bright and happy and making progress.  I'm sad though that we have to get nervous every 3 months when Reese has an MRI, that she still is on "house arrest" without a properly-functioning immune system, that she doesn't eat yet and that she can't chase Philip just yet.  Nonetheless, we still have hope for recovery and I am RIDICULOUSLY thankful for that.  So as we celebrate Reese's one year cancer SURVIVORSHIP, I'm sure I'll post quite a bit.  It's helpful for me to look back, remember where we were, see what God has done and be thankful.

The babies playing together a few weeks
 before our vacation

August 12th 2011, we left for a vacation in Georgia.  We were visiting our family there.  We broke the 10-12 hour trip up into 2 days, stopping over in Nashville with friends each way.  My cousin Morgan was with us to entertain from the back of the van, too.  We spent a few days in Atlanta with Brian's parents, then I took the kids down to Dublin while Brian went to a conference for work. It was the second time that the twins had visited Georgia and only the second time they had seen some family members.  Charlotte was 2 1/2 years old and the twins were 5 months old.  Reese was rolling over, wiggling out of her swaddle blanket, etc and had recently forced me to separate the twins into different cribs.  I hated doing it because they were so cute together.  Philip was just hanging out on his back, not into doing much but eat and be loved on.  We had recently seen our pediatrician and had decided to get Philip evaluated by an early intervention program since he was lagging slightly on his milestones and was not nearly as active as his twin sister.  We had had all but the last meeting to initiate therapy for him.  (though he never ended up needing therapy because he took off soon after)

Though I was breastfeeding, we decided to bring some bottles for the roadtrip to hopefully expedite the feeding process since the trip was so long.  Reese was a little resistant to the bottle (which wasn't totally unlike her because she was a good nurser).  She had also become a ridiculously good sleeper on this trip and Philip was the first to wake up and fuss for a feeding nearly every time.  I always fed both of them back to back and she still ate like she should for the most part.  She was quiet and not quite as active as usual.  I thought she was probably overwhelmed by all the traveling and new people etc.  Philip was fussier than usual, too.  On August 16, 2011, while we were in Atlanta, Brian and I celebrated our 8th anniversary at Monkey Joe's with our 3 kids and Brian's mom.  (We had a real date later but we had to laugh at our choice of anniversary activities). We took a family photo in Monkey Joe's, the last one before we would know Reese's diagnosis.

August 16, 2011--Our trip to Monkey Joe's
on our anniversary

On our last day or two in Georgia, I mentioned to Brian that Reese's head looked bigger to me.  She was born with a tiny head compared to the rest of us but I thought it was probably because she was a 36 week twin who started life at 5lbs.  I was hoping that she was just "catching up." After mentioning this to Brian, he agreed and started to get a little worried about it too.  She was otherwise acting mostly normally, not spitting up a lot or anything.

Reese hanging out in my lap while we were in GA

We arrived home from vacation on August 23, a Tuesday and hurriedly got unpacked and prepped for work the next day.  We worked Wednesday and Thursday but both of us were  nervous about Reese's head size.  I got out Philip and Reese's baby books and a tape measure.  Reese's head had always been 1 cm smaller than Philip's and now it was 1/2 cm bigger.  I printed a growth chart and saw that Reese was suddenly off the chart for head circumference.   Brian decided to call the pediatrician the next day  (Friday).  He tried to call all day and got a call back at the end of the day from a nurse.  She agreed to order a head ultrasound but it would not be ordered until Monday.  Brian and I both felt sick all day at work on Friday.  I hoped that this would be simple hydrocephalus, fixed with a shunt. I took my growth chart to work on Friday, August 26th, which would be my last day of work for nearly a year.  I showed  the charts to my colleagues and did not tell them initially that it was my child's growth chart.  Most of them agreed that the child should have an ultrasound, but were quick to reassure me when I told them it was Reese.  I showed my phone photos of Reese to them.  I drove home after work and talked to my sister on the way, explaining to her my concern.  I went upstairs while Brian and Morgan were downstairs and just laid in my bed, feeling sick with concern.

Brian and I couldn't make it through the weekend without worrying so we asked a doctor friend if he would take an unofficial peek with an ultrasound over the weekend.  We weren't able to do that until Sat night around 6:45.  We tried to do the normal things we did on weekends that morning/afternoon.  We went to the mall to exchange some clothes, went to buy Charlotte her fall wardrobe at Carters and ate lunch at McAlisters.  Reese was easy to feed, but I had to take Philip out to the van to feed him during lunch.  Reese was content.  In the afternoon, I decided to sort the twins' clothes and go through hand-me-downs to see what they needed for the fall.  I had huge mounds of clothes stacked in their room (which would later have to be neatly moved aside by others). I remember feeding Reese after she woke up from her nap and looking into her eyes, seeing the normal sparkle and trying to reassure myself that she was okay.  When I put her down for her nap though, she looked pale and the worry was still there in my gut.

Afternoon of August 27th before we knew--I was
holding Reese and she looked so alert and

happy that I tried to convince myself that

she was okay.  I even took this pic of her.

As 6:30 approached, we left with the twins for the ultrasound and Morgan stayed home with Charlotte.  Immediately, we could see a large mass in Reese's brain.  Brian and I both started crying and we went to Riley's ER to tell them that we needed to be seen because our daughter had a mass in her brain.  That was August 27th, 2011.   We sat in the ER, both of us experiencing waves of tears intermittently while trying to think clearly for our family.  We called Morgan from the ER waiting room and asked her to stay with Charlotte for the night.  I called my sister first because she already knew about my concern for Reese's head size.  We waited to call our parents until we knew a little bit more, but ended up calling them around 9:30 before the CT scan was even done.  I thought I could talk, but I couldn't so Brian told our parents that our daughter, who they had seen not even a week earlier, had a brain tumor roughly 1/4 the size of her brain.  We were admitted to the neurosurgery floor and Reese was started on IV steroids to help with any potential brain swelling.  Reese had an MRI the next day which showed that the tumor had features suggestive of a high-grade malignancy.  Family and friends started coming and we had Monday to spend time with Reese and prepare for the big surgery on Tuesday, August 30.  We bathed her and gave her her first haircut (since they would be cutting away some of her hair for the surgery).  We held her and sang to her.  We prayed and cried.

August 28--We had Morgan bring
Charlotte, cameras and nice clothes to hospital.
Suddenly, family photos seemed even
more important.

My mom and sisters arrived early Monday am 8/29

Morgan held down the fort....during the immediate aftermath
and for most of the next year

Gran snuggled with Reese the day before her surgery

I felt even worse than I looked

Prepping for a bath

Ready for a haircut

First haircut--
trying to make as many
special memories as possible

Bagging the hair for her baby book

Daddy loves his girl

Charlotte saying goodbye to Reese the day before her surgery

Papalou talking to Reese

The course of our entire year and lives were changed that day.  Not to over-dramatize it, but it did.  It was the worst day EVER.  And yet because we had that really bad day, we can rejoice in the really good day of making it to August 27, 2012.  When I look back and remember that day, I am so thankful for this one.  So many have supported us through this past year.  We have grown to trust the Lord more deeply this past year.  So many times, we have had no hope or options but that He would intervene on our behalf.  Reese hasn't always had the easiest path, but we have known His goodness and continue to know it on the good days and the bad.  We don't know the rest of the story yet, but this experience has just shown me all the more that I never really did know the rest of the story (on this side of heaven).  We assume that we have many many more days of health ahead, but that is never guaranteed.  I am promised that He will be with me all the days of my life and that He will carry me when everything else falls apart.  The Hope of heaven is all the more sweet (no sickness, tears, etc).  Though I'm still not perfect at it, I'm trying to enjoy and treasure each day with my kids (even the days when I change a million diapers, clean up a million messes, yell for them to stop doing x, y or z for the millionth time. )

For today, I'm just going to be thankful and celebrate this milestone, looking back and remembering what God has brought us through this past year.  Thank you, God, for giving us Reese for another year....and I do hope and pray that there are many, many more to come!

A few of my favorite verses this past year:
Isaiah 43:1-3
2 Corinthians 4:7-18

Hanging out with Pepaw and Gran on vacation

All of the grandchildren with Nana and Papalou last
August about a week before Reese was diagnosed.

The first photo that we sent out to friends/posted on Facebook
 late on August 27 to ask them to pray for Reese

For the few days before her surgery,
Philip stayed with us and Reese in the hospital

Reese used her fingers for comfort throughout.

Charlotte telling Reese that it was going to be okay.

AND NOW THIS AUGUST:

August 16, 2012-
Our 9th Anniversary--
Not the best picture of everybody but everyone
is in it and that's what counts!

 Medical equipment
is just a part of life for these 3

Partners in mess-making

So so thankful for these beautiful girls and their brother!