September 21, 2012

Author’s note:  This blog post will describe Isabella’s last days.  It will be lengthy and portions will be difficult to write (and read).  Some content may be more personal than I would normally put (especially some pictures that may be upsetting to some).  But just as with the rest of the blog, I write not just to keep you informed, but for myself in that it is both therapeutic and allows me to not forget.

Because of this, I decided to split this post.  To read the entire post, click the title above.



A few weeks ago, we asked Isabella if she wanted to go back to school.  It was the end of August and Annalise and Nathaniel were preparing to go to school themselves.  Annalise was entering seventh grade and Nathaniel was extra excited because he was going to be starting kindergarten at Marvin, the same school where his older sisters went.
 
Isabella hadn’t gone to school in a long time, even for just a visit.  The cancer that would kill her was working its way through her brain and had basically paralyzed her.  She could no longer talk or move any part of her body.  The only way she ate and drank was when we pushed food and drink through a tube going through her nose and down her esophagus and into her stomach.  For months, we could only ask her “yes/no” questions and she would answer by nodding her head.  When she was no longer able to move her head, she would raise open her eyes wide and look up to answer yes.  At some point in August, she was no longer able to even raise her eyes to answer.

So when we asked her if she wanted to go to school, we weren’t expecting an answer, so we were extremely surprised when she opened her eyes wide and looked up.  An emphatic “yes!” Isabella wanted to go to school.  But we decided we’d wait a couple weeks to visit the school since the first couple weeks are usually hectic, plus we weren’t quite sure if she would be able to handle the onslaught of her old classmates coming up to her.
On Thursday night, Marvin school was holding their open house and we thought it’d be a perfect time to bring Isabella to school.  Since there would be few children there, Isabella wouldn’t be overwhelmed with the kids and she’d be able to see her teachers and classroom. 

As we walked into the school, we were welcomed by a table where some students were promoting pediatric cancer awareness through the school’s “We Have All Been Touched” program.  We picked up our gold ribbons and pinned them to our clothes and to Isabella’s wheelchair.  We admired all the colorings and drawings that adorned the walls of the students sharing their thoughts and feelings about “hope”, “caring”, “courage”, and “love”.  We were touched by the dozens and dozens of purple butterflies that draped the walls of the school in honor of Isabella.  We were flooded with emotions as we walked through the school as we saw some of her old classmates and her old teachers as they walk up to say hello.
As we were leaving the school, we met another parent who lost her own child just last year to brain cancer.  Perhaps prophetically, she offered that when Isabella was ready to move on, her own daughter would be ready to welcome her.  I never thought that it would be less than 24 hours later.

But Isabella was asleep throughout the visit.  In brain tumor patients, the child usually ends up sleeping most of the day (up to 20 hours) in the days before they die and Isabella was no different.  We don’t know if she even knew she was at school.  We don’t know how aware of her surroundings she was, which is why we found it strangely coincidental that just as we were putting Isabella in the car to go home, Isabella began developing a different, more labored breathing pattern.  Maybe she was just waiting to go to school one last time. 

Last week, Isabella caught a cold that was making its way around our house.  Because of her weakness, it was difficult for her to breath because of the buildup of mucous in her nose and throat.  She would have problems breathing until we would clear out her nose and throat of the mucous with swabs, after which she would breath better.  So when we brought Isabella home after the open house, we thought her breathing issues were just due to the cold.  But oddly, when we swabbed her mouth, there wasn’t much mucous and she would continue her labored breathing even after we swabbed.  We wouldn’t know for several hours, but the cancer that was eating away at her brain had just reached a critical point where her breathing was now being compromised.

As the evening progressed, we tried everything to get Isabella to breath better.  We had several tricks up our sleeve which involved positioning and re-positioning her on the couch.  We had medicine to help clear her congestion.  We had an oxygen machine to help her breath.  We would carry her over our shoulders to help extend her torso which would normally improve her breathing.  But none of it worked this time, even as we carried her until our arms ached.
We grew more worried and called our doctors.  We were considering driving Isabella into New York city because if this was just some infection, it may be treatable with some antibiotics.  This was what happened back in June when we drove Isabella to the emergency room.  Back then, I thought she might die as she laid there in the ER, but after some antibiotics, we brought Isabella home.  But this time, our doctor told us that she didn’t think this was due to an infection, but instead it was tumor related – that it had reached that critical point in the brainstem that controlled breathing.

Almost four years ago, when Isabella was first diagnosed, one of my first posts was how one of the best decisions we ever made was to bring Isabella to NYU to have her treated.  We believe that decision saved her life and gave us four more years with her.  Now we had another decision, and that was whether to bring her to the hospital.  We decided to stay home and not go into the city.  If Isabella was truly about to die, I had always pictured it to be at our house and not in some strange bed in a cold hospital room.  This ended up also being one of the best decisions we had to make.

It was now past midnight and Annalise and Nathaniel had gone to bed since they had school the next day.  We didn’t know how much time Isabella had left, so we woke them up and brought them downstairs to say their goodbyes and to give their sister a kiss.  We took our last family picture on the couch.  It’s not quite photo studio quality, but we have it.  We debated whether we should call my mom and Julianne’s parents but decided against it given how late it was.

Our last family picture – Friday, September 21, 12:30am

For the next several hours into the wee morning, we sat in our living room watching and listening to Isabella breathe.  Each breath was more labored than the last.  Annalise and Nathaniel fell asleep on one couch.  Isabella, Julianne, and I squished on the other couch.  I didn’t want to fall asleep because I didn’t want Isabella to just pass with no one watching.  Or perhaps it would be better to just wake up and she’d be gone?  We fought the urge, but Julianne and I finally fell asleep at some point, holding Isabella’s leg as she laid on the couch.

Early the next morning, we woke up, and peeked over at Isabella who was sleeping but still breathing with difficulty.  Annalise woke up and went to school, which was somewhat surprising since she got so little sleep.  We called my mom and told her about the situation and she came right over.  We called Julianne’s parents and they immediately got in the car to begin the five plus hour drive from Vermont.  We didn’t think they’d make it in time.  We also sent Nathaniel off to school because he was his usual hyperactive, rambunctious self, and that really wasn’t what we needed.  We also called the hospice service who sent over a nurse to help us out.

At some point, we brought Isabella upstairs to our bed.  We knew that there were going to be a lot of people at the house so we wanted to keep her in a quieter, less active place in the house.  Julianne and I took turns holding Isabella or adjusting her to try and get her breathing to calm down to no avail.  When the hospice nurse came, she saw Isabella’s condition and immediately ordered some morphine.  We didn’t have the right dosage in the house so she made all the calls to get the proper prescriptions filled, then sent my brother out to get the medicine.  I just have to point out that I don’t know how we would have made it through the day without our hospice nurse.  She was an amazing rock that helped us deal with such a horrible situation.

Shortly after we gave Isabella the morphine, her breathing slowed down and she looked a lot more comfortable.  At one point, she had been breathing very shallow and at 100 times per minute and her heartbeat had jumped to 200 beats per minute.  It was very difficult for Julianne and me to watch Isabella as she looked like she was struggling to breathe.  I think it would have been very traumatic for us if she had died while she was struggling to breathe.  But our nurse assured us that at this point, Isabella was not feeling any of the effects of the labored breathing, and that it was definitely more difficult for the parents to watch than it was on the child.  The morphine, she said half-jokingly, was more to ease us than it was for Isabella.  And she was right.  After Isabella’s breathing slowed down, she looked a lot more comfortable which made us a little more comfortable.

Our hospice nurse called a social worker to come over to prepare Annalise and Nathaniel for when they came home from school.  We weren’t sure if she would still be alive when they came home, so we discussed asking them if they wanted to come to see Isabella. Shortly after the kids got home, Julianne’s parents arrived from Vermont, which was a minor miracle since we never thought she’d make it.  At one point when we thought Isabella was close to dying, we called them on their cell phone and they were still in Massachusetts.

I remember ten years ago, when my dad was about to die, I was rushing to get to the hospice room where he was staying.  There was an accident on the highway which led to a lot of traffic and I didn’t think I was going to make it.  But somehow I did, and a few minutes after I got there, he died.  There are plenty of stories of people hanging on to life just enough for something before dying, and I was amazed to see that Isabella lived until her grandparents arrived.

Julianne and I took turns holding Isabella as our parents stood around and watched.  We hadn’t eaten all day and I was starting to really get woozy from not eating.  Isabella’s breathing had slowed down dramatically from the 100 breaths per minute earlier and she looked a lot more peaceful.  I wanted to go down and grab a bowl of soup but Julianne said that I should stay. 

And I did.  As Julianne held Isabella, I laid next to them and placed my hands on Isabella’s back, feeling her breathe in, then breathe out.  As time went on, her breaths became even slower.  With each breath, I would hold my own, waiting to see if Isabella breathed again.  Each breath became shallower and shallower, barely above the sound of a whisper.

At around 5:15pm, Isabella took her last breath.  We waited for her next breath, but it never came.

Our little Isabella was gone.

Everyone in the room started crying as Julianne continued to hold Isabella.  I took Isabella and held her and wept uncontrollably.  It was the first time that I cried so intensely since November 17, 2008, the night we found the tumor in Isabella’s head.  Even as I write this, I can still see her face as I held her dead body and she looked so peaceful that you would have thought that she was just sleeping.  Julianne and I talked about this later, but Isabella’s death was really beautiful.  There was no gasping, no wailing, no crying.  Isabella just drifted off.  It’s hard to imagine describing someone’s death as beautiful, but somehow, Isabella pulled it off.

I don’t know how long I held her, but at some point, I laid her back down on the bed.  Other relatives had started to come over to see Isabella and there was a procession of family members streaming in.  With each person that came in, I shed a fresh set of tears.

Around 7:00pm, the funeral director came to pick up Isabella.  We elected to carry her out instead of having them carry her out on a stretcher.  For the last time, I picked Isabella up off the bed and placed her head on my shoulder.  Almost by habit, Julianne fixed Isabella’s head to the side so that her face was not buried in my shoulder.  Someone watching could have thought that it was just like the dozens of other times that I picked up Isabella, perhaps to take her downstairs to watch TV on the couch or out to the car for a ride to the beach.  I carefully walked down the stairs, one step at a time.  I was just as careful not to shake Isabella around, just as when I carried her after she had just eaten and we didn’t want to jostle her around too much.  As I walked Isabella out of our living room and out of the house, I thought to myself that that would be the last time Isabella would be in our house.  I laid Isabella down carefully on the stretcher that was prepared behind the minivan that was repurposed as a hearse.  I remember thinking how small and helpless Isabella looked as she laid on the stretcher.  These things were made for grown adults and not for children.  Julianne and I gave Isabella another kiss, then cried more as they wrapped her up and closed off the bag.  We continued to cry as the hearse drove Isabella off.  We continued to cry as we walked back into the house.
Our family would now forever be incomplete.  As we stood and cried in our kitchen holding each other, we could only comfort ourselves knowing that Isabella was no longer suffering, but now watching over us.