August 30--A look back at Reese's surgery day

A lot of times a child with a brain tumor has a seizure or becomes unresponsive, etc and this leads to the diagnosis.  Very fortunately, Reese was still stable at the time she was diagnosed and admitted.  They were able to give her steroids to cut down swelling and make the tumor easier to get out.  They were able to map out their plan for resection and have the best surgical team available first thing in the morning on Tuesday so that everyone was fresh.  I am very thankful for this and thankful for ALL those years of school which tipped us off a little bit early.  Early the morning of the surgery, her heart rate started getting slower and she would not roll over anymore.  She cried when she was held upright because her head hurt so much.  If we had not gotten in over the weekend, she might have been having emergency surgery on Tuesday instead of a carefully planned one.  It was also a tiny bit easier handing her over into the arms of an OR nurse to be taken to surgery because I knew she was getting sicker.  

Her surgery was August 30th and lasted for 8 or 9 hours.  Waiting in the waiting room was pure torture.  Lots of family and friends were there to support and distract us.  Every hour we received an update from a nurse, but it was so hard not REALLY knowing what was going on in the OR. ( I was wearing a bright peach shirt that day--I told Brian that people couldn't tell someone wearing bright colors bad news...) After her surgery, we were exhausted and waited for the surgeon to talk to us.  He explained that a lot of blood was lost.  Usually, they would have stopped once she had lost 600mL of blood (one whole blood volume for her aka all of the blood that someone her size has).  However, they had to keep going because they only had 80% of the tumor out and the tumor itself was causing her to bleed more.  They chose to give her more transfusions and press on in hopes of stabilizing the blood loss.  Fortunately, Reese tolerated this.  We are so thankful that he got at least 98% of the tumor.  This was crucial for Reese to be in a good place for chemotherapy/future therapies.  That night was exhausting as we sent Philip home to sleep in a different room than his twin for the first time EVER.  I slept in Reese's ICU room and Brian slept in the Ronald McDonald house downstairs (only 1 parent allowed in room).  24 hours after surgery, we got to see and hold Reese after she was extubated and she looked great.  However, later that night, she developed seizures that were poorly responsive to conservative seizure meds.  The 2 day expected ICU stay stretched into 8 days as Reese had to be put back on the ventilator due to the high doses of seizure meds and their sedative effect.  Eventually, the meds were weaned enough to extubate and we went to a regular floor and spent a total of 25 days in the hospital.  Over those weeks, Reese had other surgeries to have a gtube and central line placed and a plan was developed for her chemotherapy.  There were many bumps in the road and as the adrenaline of the initial few days wore off, there were many hard days and lots of exhaustion.

During Reese's months of inpatient chemotherapy, she was on the 5th floor Heme/Onc unit.  The surgery waiting room is on the 3rd floor and is visible from the glass elevator that I took down to the first floor numerous times a day.  I always felt for those families that stayed there for longer than a 2 hr "quick procedure" or the ones that looked like they were "camping out" there.  If there was ever a family sitting there after 6 or 7pm or in the middle of the night, I especially felt for them as these usually indicate emergency situations or looong surgeries.  I prayed quickly for them as I rode down unnoticed.

After spending a LOT of time in the hospital over the past 10 years (due to my profession), I definitely have a different perspective now.  I have always "felt" for those I cared for, but there is certainly more insight and depth to that now.

Thanks to all who have prayed for Reese so many many days and nights.  Whew! Thanks for reading her story and supporting us.  In my mind, her surgery date was Day 1 of physically fighting her cancer. I don't want to get ahead of myself, but I feel like this is a fresh year to relive and re-experience firsts.  Reese's first Labor Day, Thanksgiving, Christmas and birthday were lived while on treatment.  She was bald, weak and was limited in what she could do.  Hoping for a re-do this year of lots of moments though we are thankful that it worked out for Reese to be home on Thanskgiving, Christmas and her birthday last year (just the way the chemo schedule fell).

I will probably post at least one more time in the next few weeks.  I certainly hope that these aren't too much of a downer for those who are reading.  I really want Reese and Charlotte and Philip to one day look back and know what happened.  I want others who have prayed diligently, brought us meals, sent gift cards, kept our children, etc to know where we were and how much we needed and appreciated what they did.

The grandmothers in the waiting room

You might notice a theme with Philip
in these photos.  One could argue that he missed
his sister but I think he was taking advantage
of all the people who needed someone to snuggle.

Gran paced the floor with Philip

Philip knew that Daddy needed a hug

Reese's first photo after surgery.
Starting to wake up after her MRI.

Philip knew who the girl in the turban was
right away

Morgan with Captain Snuggles

Holding Reese for the first time after surgery
24 hours later

She looked like she knew us
for the first 24 hours but later
had to be re-intubated due
to seizures

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!

Olympic dreams

I always think I'm not going to get sucked into the Olympics...I like sports but I'm far from die-hard about anything.  Nonetheless, 4 years ago, I was on night-float as senior resident during the Beijing Olympics.  This meant I came to work at 7pm and left at 7am for 2 weeks.  Normally, things were crazy from 7pm til around 2am when the ER stopped sending patient up to the floor to get admitted.  Then there was usually a few hours of quieter "down" time to check up on other patients and go to deliveries (we all know babies love to come into the world between 2am and 6am).  So, I was one of the few Americans who watched the Olympics in real time because I was up in the middle of the night. At 16 weeks pregnant with Charlotte, I felt her "flutter" for the first time while watching Michael Phelps win one of his 8 golds!  I know a lot of people love him and some don't, but I couldn't help but get teary as a pregnant mom-to-be while watching the interchange between he and his mom.  I hoped that that little baby in my tummy would one day grow to do great things...but even more importantly, grow to love and appreciate and trust his or her mommy.

Now 4 years later, I can tell you without a doubt, that my 3 1/2 year old has every ounce of energy that  Olympic games require.  Her younger brother does, too.  Her younger sister is quickly making gains and I am wondering what happened to my energy.  Surely, I used to have some too? I look at them and wonder what they will be like.  What will they love to do? We have a fun time trying to figure out which sport each child is suited for, fully realizing that the chances of making it to the Olympics are about as good as winning the lottery:) Nonetheless, we are excited about their lives and who they are and who they may become.  Such a challenge to harness and mold those God-given personality traits into something productive and beautiful.  I certainly can appreciate how important prayer is in that process because parenting books/methods are seemingly ineffective on many occasions!  Charlotte and Philip are both tall for their ages and have no fear.  Philip at 16 months can reach counter tops, climb on top of tables, lock doors etc.

...................................................

Above post was written a few weeks ago when I was in full-blown Olympics mode.  I never finished it...probably because I was watching some event until midnight like a crazy person...hahaha.  Anyway, I love to dream for my kids and going through what we have been through this past year makes you appreciate the little things that your kids can do.  I definitely want to dream big for my kids, but I do pray that they would be kind, compassionate, loving, etc.  That they would walk with Jesus and have ultimate hope and joy in Him while they live out His calling in their lives.  For now, I'm in the trenches, trying to keep them from falling off a table, wetting their pants, running out into a parking lot alone, and hoping a gtube feed stays down, that they crawl, walk and run.  I loved the commercials during the Olympics of the kids that were wrecking their parents' homes while they practiced for an event.  I could identify, but I'm not sure if we'll ever bring home an Olympic gold to show for it....;)  For now, I'm just trying to enjoy what I can, not get too overwhelmed and just be a good mom.