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.