lucille packard

I’ve made the drive many times in my life .. Yesterday making it memories flooded back. Jonathan needs a hernia surgery. His pediatrician referred us to Lucille Packard. Its scheduled for first thing Friday morning.

Initially on the drive yesterday I remembered the evening we first made the trip for Jennifer. Lost trying to find our way to the emergency room. How big and foreign the hospital looked. .. I still can’t believe that just a few weeks later I would know many of the hallways of this place.. That my almost 6 year old would also.

How in the beginning we ate at one cafeteria but eventually decided the bigger one.. the one connected to Stanford was better food for her. So we would go there. I had the same breakfast every morning .. after she was out of radiation. I thought about getting it tomorrow. A yogurt parfait with soggy granola and de-caf coffee.

I remembered that first night .. I remember driving past our infertility clinic. . A place we had spent a lot of time and heartbreak. Babies put in.. and then lost.. 5 IVFs and 5 miscarriages before we finally got our Jennifer.

When we drove past I thought.. this can’t really be that bad. Not us. Not after how hard we fought to get to be parents. .. And although I was scared.. that realization.. it buoyed me.

Tony and I fought in the ER that night. The first dr wanted to send us home. Said she passed all her neurological exams and Tony was ready to pack her up and head home.. I wasn’t.

We asked for a neurologist to examine her. She knew we had a MRI scheduled for  4 days later but said we could stay overnight and do it first thing in the morning. It was a Friday. Her 6th birthday party was the next morning. But we stayed.

i took a picture.. her first time in a hospital overnight.. I wanted to remember. I never will forget it.
i took a picture.. her first time in a hospital overnight.. I wanted to remember. I never will forget it.

Baby Charlotte couldn’t stay with us.. and only one parent was allowed to stay overnight. .. I barely slept that night. I stayed as late as I could. .. mostly just nursed the baby and returned.

Her MRI.. it took much longer than they said it would. I knew it was because they couldn’t figure out what was going on.. what was causing her eye to turn inward.

They were going to do a spinal tap.. But even with that.. It was a long time.

The waiting room was empty. It was just us. That was a blessing. I could talk and pace. Annoy the crap out of my mom and Tony. Nurse Charlotte. I complained about how the worst thing would be to not know what was wrong.. And since I was sure the MRI was clear and they were doing the spinal tap.. well then I was just worried about no answers.

damnit 

they have a room for kids in patient.
they have a craft/game room for kids that are  in patient.

I never ever sat back in those chairs again. I always sat somewhere else while I waited.. for 7 weeks I waited in that same room .. to be called back to recovery for her.

How ironic. A waiting room for recovery. But that’s never what we were waiting for was it?

She was sedated every time for radiation. I had somebody with me. Babies aren’t allowed in the recovery room. We called them the cuddlers.. It was also my sanity.. and sometimes Jennifer’s too. She liked getting to show them her tricks before hand.. Or she liked to eat together afterwards in her cafeteria. .. But never both. Good mood before or after.. rarely ever both.

Charlotte was was our sanity... We put her crib in the kitchen of our "girls play" we stayed at during treatment
Charlotte kept us afloat, away from Daddy and brothers. Just us girls… We put her crib in the kitchen of our “home away from home” we stayed at during treatment

My sister will come tomorrow to cuddle Bridgette. .. She is only 3 months younger than Charlotte was when our nightmare began.

I will be walked back to recovery. The hallways we take. That I could walk blindfolded now.. But that first day.. they were so confusing… they seemed long.

As I ran to her and she started to wake up. I asked to be sure the popsicle was gluten free.. I made sure they called the kitchen. Those were my last moments of thinking her celiacs would be the disease she had to live with ..

my sweet toothed girl had so many popsicles she eventually grew tired of them... but what a treat they were
my sweet toothed girl had so many popsicles she eventually grew tired of them… but what a treat they were

I asked about the spinal tap and the nurse .. smiling.. she told me the good news that they didn’t need to do one.

clench.

This was the first time I felt the invisible muscles inside tighten.

fear.

Because then we knew what it meant. No spinal tap meant they found something.. in her brain.

The phone buzzed and the still smiling nurses face dropped. No more eye contact until she ushered Tony and I into a different room. I remember how different this room seemed. I had no idea what it was. But I would learn later.  Pre-op.

We didn’t spend a lot of time here.. radiation was done in Stanford and she was wheeled to recovery where I would meet her. But we spent our early times as a cancer patient and mama in that room… it holds some chilling memories. And even some perspective.

she was so much happier when she got to wear her own clothes once radiation started
she was so much happier when she got to wear her own clothes once radiation started

I got to know it all so well. I eventually would walk between both room if I needed something for her.

At least 10 sober stone faces doctors sat in a circle to explain it all. Words. All just a jumble. Most of them would all change anyways.. that day and then especially 2 days later. Tumor. Pons. Operate. Tumor board. We are your team. Don’t google.

I felt my face heat and flush.

halloween was 5 days later and the red still hadn't gone away
halloween was 5 days later and the red still hadn’t gone away

Unreal. Not our reality.

No we don’t want to see the slides. I need to call my sister in law.. Which brain surgeon is the best? Who is the team?

None of it mattered though.. 2 days later. She turned 6 and we learned some tumors are inoperable and for some kids there is no cure.

dipg. fuck you. 4 letters. fuck you.

We used to jump. Colored square to colored square as we walked back to bolt her head to the table. For radiation that might buy us some time. We had a friend photograph treatment one day..

why didn’t it? why not her?

Yesterday .. a whole different building .. but the same floors in the exam room. Nicholas. He misses her the most right now… he jumped.. in that tiny little room square to square. Over and over again.

We check into Ford Surgery Center.. just hearing those words.. I could see it all..almost taste the flood of memories. Like this one.. Crystal clear. I could put pen to paper all night long..

Port placement and when they sculpted that mask to her perfect little face. . And when they had to do it all over again . . Ford Surgery Center.

I will be escorted back to the waiting room and then when Jonathan is done, back to the recovery room. To a boy that actually will get to recover.. And for that I will be so grateful.

IMG_8868

sissy

i think I’m gonna need you.

he will too.

but right now

its just you

 me

and our memories.

DSC_0483..until there is a cure..

 

12 Responses to “lucille packard”

  1. I just said a prayer for Jonathan, and a prayer for you on what I am sure will be a difficult day. I pray Jennifer brings you comfort in her own special way.

  2. We don’t know each other but I’ve followed Unravel for 18 months now, including throughout my second pregnancy. I delivered my beautiful daughter at Packard and thought of Jennifer a lot during our couple of days there. It’s crazy that a place can have such wonderful memories for some and such painful ones for others, but for me that just underscores how blessed we are to have healthy kids. Thank you for reminding me how precious life is and how fortunate I am to have healthy children.

  3. You’re blog has helped me so much these last 5 months. My niece, Maddie, was diagnosed with dipg May 16th. She passed away in my arms October 22nd. How I wish the numbness would settle in instead of this raw pain.

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