Hold Out Hope Day-Sept 5, 2012

Last September 5th was Labor Day.  Last September 5th, we were in a corner ICU room with a child that had been extubated the day before.  Our almost 6 month old daughter had glassy eyes, a fresh surgical incision, EEG wires and white turban on her head.  She looked at us but didn't really see us.  She had lots of tubes and wires everywhere.  Only a week or so before, she was a great breastfeeder and now she was too weak to take a bottle.  Our little girl that was almost sitting solo at 5 months and could roll her way into any kind of trouble she thought up, could barely support the weight of her head.  All of it was necessary to get the tumor out.  I was "prepared" and okay with going through all of this because it was necessary to get her well.  I didn't care if she was going to be capable of doing well in school, etc, but I wanted to see evidence of that old spunky girl in her eyes.  I wanted to see a smile.  I wanted to see my Reese.  She was off the ventilator and meds were being weaned but she was not herself.  24 hours after her surgery, she had been taken off the ventilator and looked like her old self minus a turban and a lot of wires and tubes.  However, later that day, she started having seizures and eventually had to be reintubated and started on two or 3 sedating meds to stop them.  A few days later, the meds were weaned some and she was extubated again but she was not nearly as strong and her eyes looked absent even though she was awake and responsive.  We were constantly sending out updates via family/friends and Facebook.  We were desperate for prayers for Reese.  Most of our family left the weekend of Labor Day to go back to GA and I sent my sisters an email the night of Sept 4, asking them to pray for me specifically because it was so hard to see Reese looking so sick and that being away from our other two kids was difficult.  Both my sisters responded the next morning with special words of encouragement that only those raised in the same home and who know you super well know how to deliver.

One of my sisters wrote " I pray that on Sept. 5 of next year you will be standing in your back yard watching a 3 yr. old blondie and a little red haired girl (w/ possibly a helmet on :)) and a little reddish blonde haired boy running around and playing on their swingset. I am clinging to the Lord and praying for you constantly. "

As the pathology came back on Sept 6 and we met the neuro-oncologist and discussed her intensive treatment plan, the months ahead seemed insurmountable.   The plans changed a few times over the next month as new info became available but we were going to be in the hospital for the majority of the next 6-8 months.  We didn't know how our weak battle-weary child was going to make it through the treatment that could make her  better.  Over the next few weeks, I got my first smile from her and slowly but surely, Reese's personality came back through even though she often felt terrible.  

I often thought back to my sister's mention of Sept 5, 2012 and thought to myself, Sept 5 isn't THAT far away.  There is a reasonable chance that life could be better then.  

Holding Reese again after 3-4 days of intubation following her seizures.
As bad as some of these pictures look, I did not take pictures of the worst days.

Holding my baby again

Being monitored for seizure activity

Had trouble holding her head up
after surgery

She even struggled to hold her eyes open.

After Reese's first round of chemotherapy, she nearly stopped breathing and had to be intubated on the floor and taken to the ICU for another 8 days.  After she recovered, we went home for about 5-6 days, during which time we had to have her stem cells collected for her stem cell transplant that would be during Cycle 6.  She was ridiculously sick and weak at home.  She vomited all the time.  She was uncomfortable and didn't want to be held.  We weren't sure if she should go back into the hospital due to how bad she felt or not.  One night, Brian and I sat on the couch together after everyone else was in bed and wondered if we were going to put Reese through something that was only going to bring her harm and not help her. We wondered, as all parents do about different things, if we were doing the right thing for Reese.  We cried and hoped for a time when we could hold Reese comfortably again.  I shared with him about the hope of Sept 5th that night and it brought both of us comfort to think about a future with Reese in it and thriving.  Sept 5 became something we would say to remind each other of our end goal and hope when things were difficult.  Not just a nebulous future time but a firm, solid date in the foreseeable, doable future.  Reese got a little better before going back in for Cycle 2 and we continued along on her plan.  

Soooo, a lot of background to say, we have planned to  CELEBRATE  Sept 5, 2012 for quite a long time.  Reese isn't quite running around yet and she doesn't have a helmet on.  Philip's hair is more red than blonde-red, but we are so thankful to have made it to this date!  Reese is getting better day by day, bump by bump at times, but we are so very thankful!

We decided to celebrate the day by going outside and playing on the swingset just like we envisioned when the days were tough.  Reese has not been outside to play since she was diagnosed.  She hasn't been out since transplant because she is only supposed to be outside for transport to the next place and even then she has to wear a mask because things in the air could be harmful to her.  However, because it had just rained (and most things in the air would have been knocked to the ground at least temporarily, we spent a quick 10 minutes outside maskless).  The swing has also never been so thoroughly disinfected prior to play either :) We're mostly rule-followers when it comes to our kiddos, especially our Reesey.

Take me outside to play, Mommy!

I'm going to get myself out of this chair if you don't!

The day was great but was even more a reflection of the last year than we could have planned.  It was rainy in the morning and we weren't sure if we were even going to be able to go outside.  Philip only slept for 45 minutes at preschool and bumped his forehead (AGAIN) at preschool so he was cranky and looked a little beat-up for pictures.  Brian made a special out-of-the-way trip to get milk to have with the cake and ended up dropping it in the garage (I've literally never seen a gallon of milk rip open, but it did.)  The kids were all crazo and Charlotte wanted to eat the cake pronto.  Later some buffalo dipping sauce ended up on the tablecloth and the floor had ground-in cake but it was probably more representative and appropriate for celebrating a past year filled with ups and downs and normal (and abnormal) challenges of life (longest run on sentence ever...hahaha)

We ended up getting a break in the rain in the afternoon, so Brian disinfected the swing and we snapped a couple hundred (not an exaggeration) pictures.  Reese LOVED being outside.  She giggles when we go out to take the other two to school.  (That's what a daily existence indoors does to you!). She liked the swing and the other two were incredulous that Reese was outside with them.  Charlotte mentioned it several times..."Reese is outside with us?"  She also thought it was Reese's birthday because of the cake so she kept telling Reese "Happy Birthday!" and would occasionally tell Philip too since she knows that their bdays go together.  And it was a birthday of sorts....hopefully, a birthday into a fun new year, full of adventures without a mask.  And maybe without some medical equipment.  

Our sweet biggest baby girl

She loves it!

Reese, let me show you how to swing like a big girl!

Philip can't believe Reese is outside too!

I'm not sure if Reese was enjoying herself...hahah!

Twin red awesomeness :)

Oh, how we LOVE these three!

Sib love!

Philip is a total goofball! :)

Reese getting into stuff now!

We finished it all off with pizza, cake and more pictures.  Reese was not interested in eating as usual but she did dip her fingers into some cake which is progress for her.  

A tasty cake though the artist's penmanship and
spelling left something to be desired....
Yay R-E-S-S-E?

I'll put a finger in it, Mom.  Are you satisfied now?

Charlotte really hates cake.

Getting her hands messy is progress!

Finger-licking good!

Happy dance!

More happy dance.  She is the best baby dancer ever!
 (don't tell Charlotte and Philip!)

After the mess was made, all 3 needed a bath so we tried for the first time ever to bathe all three together.  Reese surprisingly seemed to enjoy her bath more with company in the tub to enterain her!  All in all, a good day.  It's wonderful to finally be here in September 2012 and see our sweet baby develop into a toddler (or scooter).  Now, I'm ready to dream about Sept 2013!  I'm envisioning a cancer-free walker and eater with her sibs at Disney World :) 

Can't believe they are all in the tub together...
FINALLY!

Philip, oh Philip...

Poor guy is so very thirsty....

LOVE that she can have messy hair now!

Some random cuteness from Daddy's chef helpers while
Mommy was gone.

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!