Paris to surgery

I write this with tears streaming down my cheeks as my daughter lies sleeping under stiff, sanitized hospital sheets. Emotions have been a roller coaster of hairpin turns, sudden drops, and reckless take-offs the last few months.

Wait, let’s back up.

The end of March excitement penetrated Esperanza’s heart when she found out that her Make-a-Wish to go to Paris had been granted. That’s right, all six of us were gifted a 6-day fully paid vacation in Paris. Try every pastry, chocolate, pasta, pizza, crepes you want. Also, visit iconic landmarks, all completely paid for.

Esperanza has been dreaming of going to Paris since second grade. Her second-grade teacher had gone to Paris during the summer. Therefore, that entire school year she told all her students about her trip, which lit a fire deep in Esperanza’s heart, and she’s been talking about Paris ever since.

Excitement built as we planned, researched, and prepared for this incredible once in a life time trip to Paris. With only one week left until our departure date, we received gut-wrenching news. The pressure behind Esperanza’s eyes was building. I didn’t get it. Her MRI a few days prior showed no sign that her ventricles had swollen or that her tumor had grown. Why would she have fluid build up behind her eyes?

A couple of days later (2 days before taking off to Paris), the neurosurgeon confirmed the need for her to have a shunt put in, but he did not feel that it needed to be done that day. And he thought it’d be great for Esperanza to have her Make-a-Wish in Paris, then a week and a half later, she’d have a shunt put in.

So with mixed emotions, we packed our bags and headed off to Paris. We all had a great time, but especially Esperanza! I loved seeing the smiles on her face. (Videos that show this incredible trip are below.) During the trip, Esperanza developed pain behind one of her ears, and we did notice her more tired than normal. But also knew that it could be due to jet lag. But overall, she had a great attitude, and we all enjoyed every moment.

Our last morning in Paris, we gathered our things and headed to the airport. We checked in our larger luggage items and headed to the TSA line. As we stood in line with our passports in hand, Esperanza started making noises. I looked over to see her waving her hand with a look of panic on her face. Instantly, I knew she needed to vomit. Desperately looking around, I found a bag to catch the projectiles racing out of her. It was not enough. Vomit poured out of the bag onto the floor and all over me. After cleaning ourselves up, we headed through security. She said she felt a little better. But her face showed that she still did not feel like herself.

After a couple hours, we were on our first flight from Paris to Atlanta. She was able to sleep for part of it and seemed to be feeling a little better. However, after landing in Atlanta, Esperanza started to feel unwell again. Not long after boarding the plane, Esperanza started vomiting again. A sense of panic hovered over our seating area. She described an inescapable pressure in her head. After she stopped, Bruce and I knew she needed to go to the hospital once we landed in Pensacola.

That flight was only an hour, so as quickly as we got up, we were landing. After gathering our luggage, we headed outside to be picked up by a friend. By this time, it was close to 7 pm, but our bodies had already been up for 24 hours.

With jet lag exhausted-filled bodies, Esperanza and I were dropped off at the ER. Not a good way to end a wonderful trip, but a much-needed way.

After being omitted, the pre-surgery process started. CAT scans, vitals, etc. Then, early on Thursday morning (a day and a half later), Esperanza was once again wheeled back to have brain surgery. My heart exploded within my chest as I watched her bed vanish behind the closed doors. No child should have to go through brain surgery, let alone go through it four times.

The time felt like it stood still as we waited. Finally, the doctor came out. He said as soon as he drilled past the bone in her head, fluid exploded out. Making it very clear that the ETV that had been put in her head over 2 years prior was not doing the job anymore, and a shunt needed to be inserted. My heart sank. I knew there was a 99% chance she would have a shunt put in her head, but I was holding onto the 1% that they wouldn’t have to.

She’s been dealing with this tumor for 12 years, and we had been able to avoid having a shunt put in that entire time. And yet now it’s in there . . . for the rest of her life. Now it’s not just the tumor that we have to deal with, but it’s this shunt. Possibilities of infections, of it going bad, the list goes on. As I write these words, my heart beats heavy, aching for understanding. I really thought after proton therapy, she’d be done. My heart is heavy. Why does my little girl have to go through all of this?

I’d be lying if I said I wasn’t angry. I am angry. I’m tired, and I’m sad. This sucks! And I have wanted to avoid the Living God because I am mad. I am mad that He hasn’t healed her yet. I am mad that she’s had to go through so much pain. Tears are streaming down my face just writing these words. And every ounce of strength goes with it as I write these words.

But I also know that our Living God sees the beginning to the end of our lives. And in my anger, I know “We will see the goodness of the Lord in the land of the living.” (Psalms 27:13). I know He will use this, and I know at some point there will be a silver lining that will come out of it all that will radiate His glory. I’m just not sure what it is yet. But I choose to trust Him even as I cry.

It’s now been 24 hours since she came out of surgery. It’s been rough, but overall, she’s been doing well. And now they would like her to finish her healing at home. Therefore, this afternoon we will head home.

Specific prayer points are for speedy recovery, no infection, no malfunction of the shunt now wedged in the back of her head, the pain will go away, and her double vision will stop. Lastly, please pray for the hearts of my family and me. This has been hard to swallow. I’m thankful that we live somewhere that has this kind of medical care, but we so badly wanted to see miraculous healing. But I also know sometimes the testimonials that are being built have very bumpy roads with unexpected turns, unwanted chaos, and unstoppable pain. But I know the bumps affect all of our hearts in different ways. Therefore, as we all process this new reality, your prayers are what will help sustain all of us.

Thank you for joining us in prayer.

Below, you are welcome to view Esperanza’s Make-a-Wish Trip to Paris.

Esperanza’s Make-a-Wish to Paris
Travel Day