Maia Trabanino Menéndez

MAIA TRABANINMENÉNDEZ 

 

Maia Trabanino Menendez en Español

 

 

God, she is yours, and I entrust her to you.”

 Editors Note: We have been enchanted by this sweet little girl since before she could walk.  When we heard she was diagnosed with neuroblastoma on her second birthday, her return to wellness and her family’s strength to endure have been first and foremost in our prayers.  Her mother shares the story of her remarkably resilient three-­‐year-­‐ old daughter.

 Can you share details of Maias early life?

Maia Menendez FamilyMaia, father, and mother

Maia was in a hurry to enter the world.  Because of her fast fetal heart rate, the medical staff considered her to be in distress and delivered her by Caesarian section at seven months, weighing in at three pounds on May 18, 2009.  She spent the next 21 days in the NICU.  After that she was a healthy, happy little girl in every way with no other medical complications.

Maia Menendez mother

 

Remind us how the cancer was detected.

Our nightmare began on her second birthday when symptoms of pneumonia returned us to the hospital for X-­‐rays. The tests revealed a sizeable tumor located between her lungs and heart as well as one growing up her spine.  The diagnosis: neuroblastoma, the silent cancer.  There are typically no warning signs, and when symptoms occur, it is often too late to treat.  This malignant form of cancer often attacks infants and young children.  In Maia’s case the tumor was pushing 50% of one of her lungs and diagnostically she was given a 30% chance of survival.

 

How did you choose where to have Maia treated?

There was no staging; there was no choice.  Immediate surgery followed by extensive chemotherapy was the only option.  We were very confident in our doctors and medical team at San Salvador’s National Hospital.  Although my husband and I did investigate second opinions and treatment elsewhere, we trusted our doctors and were comfortable with our decision.  First, the hospital here in San Salvador is well-­‐respected and consults closely with St. Jude’s Hospital for all treatments.  Cases are shared by internet as well as supported by visits from the St. Jude’s staff when needed.  Maia was studied by many doctors who also did videos on her case.  I was interviewed extensively as well.

Cost did not in any way enter into our decision, but as a matter of information, a private foundation called Ayudame a Vivir (Help Me to Live) covers chemo costs to all patients.  It is available here at this hospital as well as in Guatemala, Belize, Honduras, and all over Central America.  It is a blessing for our country.  The same treatment that is free here would have cost us $2 million in the U.S., and then it would have been only Maia and I traveling.

How did you explain to such a young child what was happening?

Explaining what would happen to a two year old was difficult.  “IVs” and “ports” were not in Maia’s vocabulary.  I simplified things into terms she understood as best I could.

What did the course of treatment involve and the timeframe?

Three surgeries were necessary for Maia.  One was in her thorax area; the other two were combined through her lungs and around her spine.  The tough part was the chemotherapy regimen.  It involved eleven cycles.  Each cycle was seven days or 77 treatments.  It was designed to be a seven-­‐day treatment followed by seven days out of treatment. However, in Maia’s case she was ALWAYS re-­‐ admitted during those seven days she was supposed to be home due to severe side effects of the chemo – diarrhea, vomiting, fever, seizures.  She experienced all of them.  Prior to going in for her last surgery, the doctor gave me a very straightforward warning.  “Ma’am, do you know this could be the last time you see your daughter alive?”  I said, “Yes, I know that.”  I understood that he had to tell me that to prepare me.

Maia Menendez three

Did you reach a point of accepting whatever the outcome was to be?

Yes, after the doctor laid it out that results of the surgery were very uncertain, at that point I had to trust God.  My prayer that day was, “I don’t know if you want to heal her or take her.  But I don’t want her to suffer.  Save her or take her.”  This was the first time I really accepted that Maia was in God’s hands and I would accept whatever happened.  I gave up all my selfish thoughts of needing her to be healed at that point.  I realized that “God, she is yours, and I entrust her to you.”

Maia Menendez four

What was the range of your own emotionality during her extensive treatment?

Life for Maia and me for the next year, eleven months, to be exact, was quite literally at the National Hospital.  The impact of Maia’s diagnosis, limited chance of survival, lifestyle change, being without my husband -­‐­‐-­‐it was sudden, unexpected, and overwhelming!  I spent the first week of her treatment crying non-­‐stop.  Her doctor pulled me aside and gave me the lecture I needed to hear, “If you keep crying, you will transmit your emotions to your daughter.  It will lower her defenses, make her depressed, and possibly even kill her.  This is a short-­‐term process.”  I said to him, “You are absolutely right.”  From that moment on I changed my modus operandi.  I began to inject my positiveness to Maia and all the other patients and their parents on the ward.

I kept my emotions in check for 23 hours a day.  My mom came in to relieve me for one hour each day so I could go home to shower and eat something.  From the minute that I got into my car until the minute I got out of my car to return to the hospital, that hour was mine to unleash my emotions.  I cried and cried and cried my heart out!  I could never shed a tear in front of Maia or even in front of my mom lest she begin.  But I had that hour each day. And it was such a blessing to me to have that one full hour.  There were so many moms in the same situation sitting there with their sick children who had no one ever come to relieve them.  They were exhausted, hungry, no chance to wash.  They were tethered to their child’s bed around the clock from the day of admission to the day of discharge or death.  Many had other children at home.  There were really no provisions for parents spending nights in the hospital.  They provided only a chair.

 Share some of your interactions with the other mothers in the hospital ward.

Some of these moms became very bitter and were jealous that I had relief.  Some were verbally abusive to me saying things like, “You have a car to drive yourself; I have to ride a bus with sick people,” and “You get to go home to a clean, air-­‐ conditioned house.  I have nothing.”  “Your daughter gets to eat lots of healthy food like chicken which I can’t afford to buy my child.”  I tried a lot of ways to be positive with them but knew they were right. However, we were all facing the same critical medical issues, and it was a live-­‐or-­‐die situation for each of our children regardless of socio-­‐economic situation.  Sometimes I would look at these mothers, and you could see that they had already given up hope just by their downcast eyes.  They were only waiting.  It was really sad.

How did Maia’s hospitalization affect your family?

It was an adjustment for our whole family.  Due to the hospital rules permitting only one visitor per patient, my husband ended up being very excluded from Maia’s life.  By the end of his workday schedule, hospital visiting hours had ended at 6 PM. At times I talked to security and begged for them to make exceptions so Maia could see her dad and they would allow him in for fifteen minutes.  I took pictures in of the whole family so she could see them at all times.  One of the nurses asked who the one saint was in the photo.  It is my dad!  We skyped frequently also.  It was a strain on life in general. However, we learned about priorities during this time.  It was more important to spend time with our child than to have a clean, neat, orderly house.  It was more important that Maia spend quality time with family she loved than for us to worry about her picking up germs.

Describe the medical interventions Maia required.

It was hard to see Maia suffer every day and every night.  Maia needed to have two ports – one was for medication-­‐-­‐ and they worked until December. When her veins kept collapsing one by one, the medical staff recommended putting a port into her stomach with a zipper-­‐like contraption.  There was more risk for infections, but it was her last chance to get the meds of the chemo into her.  There was no choice.  Thankfully Maia lost no weight during that year of treatments.

How did you entertain Maia for 23 hours a day?

I took my i-­‐pod which had lots of pictures and downloaded games for her to play.  I brought videos for her to watch, took her favorite books and toys. She wore her favorite pajamas which allowed her to feel more like herself.  So many of the kids wore only the faded green institutional hospital gowns.

Describe the worst situations you encountered during the hospital stays.

We were in the National Hospital, not in a private one.  There were eight beds in a room with all the kids in the same condition as Maia, and often during the night one of the kids would collapse and die right in front of our faces.  I was always thinking that my daughter could be the next one to die.

When one of the kids would die, I would try to cover Maia with a sheet to shield her view.  She was young, but she was aware and would ask, “Mommy, mommy, what is happening?”  I tried to distract her by putting on music or would position my body to create a barrier between Maia and what was happening.   This one little girl in particular didn’t lose her hair and seemed stronger than most.  I was so sure she would make it.  One night she died of a heart attack.  I thought to myself that could be Maia. I knew with each successive month the treatments were becoming stronger and stronger.  I didn’t ask for a miracle from God.  I asked God to allow her to complete the last treatment and give her a chance.

Maia Menendez five

Was Maia aware of these children dying?  If so, how did you explain their deaths to her?

Yes, she knew.  She would ask me where this friend or that friend was.  I was honest and told her that she died and went to heaven with God.  She sometimes asked me if she would go to heaven.  I told her, “Yes, you will go and you will be very happy because your friends will come to take you.”

I tried to make nice stories so she wouldn’t be afraid while preparing her in case God did want to take her. I didn’t want her to be scared. I would mention the names of the boys and girls she knew who had died and that they were now all angels who would come and be with her if that’s what God wanted.

Did Maia ever experience any extraordinary spiritual encounters in the hospital?

Yes, I think she did.  One day she announced with great confidence, “Mommy, Maia won’t die.”  I asked her how she knew that, and she just looked up and smiled. She saw Jesus a couple of other times.  The chemo comes in different colors and once it was red and she asked me why it was red.  I told her it was Jesus Christ’s blood sent to her to make her better.  That night she slept without any side effects at all which was very rare.  At 2 AM she awoke and was looking off into the distance.  “Mommy, Mommy.  Jesus Christ comes.”  I knew she was looking right at him, and I told her, “Maia, tell him you want to stay with me.”  She only smiled.  She was very comforted and slept with a smile.

Maia Menendez six

Did Maia interact with the other children on the ward?

Yes, Maia was very popular and friendly.  She would lead the kids in singing and marching in parades. Maia would always ask me to bring chocolate, and then she would go around passing it out to each child saying “good boy” to each one.  Some of the moms and myself would bring activities such as finger painting, crayons along for the kids to do during the day. Maia tended to always have a BEST friend, and the uncanny thing was that it was often that child who would be the next one to die.  The doctor told me one day, “Your daughter is an angel. She made that child’s last day on earth his best day.”

What sustained you during this time?

My daughter. She was always so positive. Many of the children were sad or angry. They would slap their mothers. I felt so blessed. Even when Maia got sick to her stomach and vomited, she wiped her mouth, and would say, “I’m okay, mommy. I’m okay.”  She suffered but never showed it.

Did you ever blame God for Maias condition?

No, I never blamed God.  I blamed myself because maybe we didn’t have good communication with God.  Maybe we didn’t go to church often enough.

Did the doctors indicate how long Maia may have had neuroblastoma before it was discovered?

They feel she had it in utero and that my water breaking at seven months may have been an indication of something amiss.  Thanks to God and to those tests which turned out to be a blessing in disguise, it was discovered and still treatable.

Had you ever heard of that cancer before her diagnosis?

Somewhat, but the strange thing was my 40-­‐year-­‐ old cousin in California was diagnosed with it after we found out about Maia.  He was unable to fight it.

What is Maia’s health status now?

She got through all treatments and tested clean. Every month she returns for bloodwork and every six months she gets an MRI.  This watch will continue for nine years.  At that point she will be considered cancer-­‐free.

When you received the wonderful news after her tests came back, how did you celebrate?

Well, it’s a funny story.  A friend of mine called and said, “You have been so strong.  You should consider going to Disney World.”  I dismissed it as a silly idea. The doctor had told us to call if after her last treatment there were any side effects.  Days and days passed with no problems.  I called the doctor asking permission to take Maia to the beach.  Her reply was,  “Go to Disney World!”  Hearing it a second time was all I needed.  I got on-­‐line and booked a vacation the same day.  The trip was a total gift of God.  When we got to the hotel, they didn’t see she was bald or know anything about her situation.  It was late at night and they apologized saying, “We are so sorry, but there is a problem with your internet reservation.  But it’s not your fault.  We’ll give you an upgrade.  We’ll book you in the presidential suite!”  I couldn’t believe it.  It had a beautiful view and a Jacuzzi.  Then my husband said, “Let’s call room service; it’s too late to go out to find a restaurant.”  The person at the desk called apologizing for the meal being late and “comped” us the meal.  We were given a fast pass to get on all the rides immediately without having to wait in any lines.  When we got off the rides, the employees would ask Maia, “Do you want to ride again?”  “Yes, yes” she would say, and off we went.  It was a dream vacation!  We had taken along a suitcase of medicine and never used any of it!

After this harrowing story, have you and your husband considered having more children?

During those long days in the hospital, I couldn’t even entertain the idea of having another child.  But now that it is all behind me.  Yes. The Disney trip made me think I wanted to have another child to be with Maia.

Maia Menendez seven

Has Maia shown any traumatic effects of her hospitalization?

No.  Her preschool teacher is amazed at how well and how quickly she adjusted to class.  They see her as friendly and happy.  She enjoys playing doctor with the other children.

What did you learn about yourself during this past year?

A great deal!  Before Maia’s illness I didn’t care about problems around me or people around me.  I lived in my bubble.  I had a perfect life – perfect family, a perfect job.  I paid no attention to the murders happening around me.  God really opened my eyes.  I have become more sensitive.  God told me even though I live a perfect life, I have a responsibility to help those who don’t live that life. Maia was protected by God.

How have you continued to stay in touch with the families or staff at the hospital?

I stay in touch with many of the families. This Saturday we have organized a commemoration in a big park to celebrate the lives of the children who did not make it this year.  We will release balloons with their names on them.  I go visit the hospital on a regular basis and encourage my family and friends to collect toys, Pampers, candy, and other donations that are needed and appreciated.  This is a small way for me to feel I am giving back to a place that saved my daughter’s life.

(She invites us to join her and we simply run out of time.  Hopefully, we can accompany her to the hospital on our next trip.  Here is a partial response from Maia’s mom when she read our story on  Maia for the first time. “I almost cried when I read the story.  It brought back many memories.  I congratulate you because you tell the story exactly the way I feel and as things happened. God gave me the greatest miracle in the world!!! Maia’s miracle!!!  I send you a BIG HUG!  Thanks for helping me to tell the world about Maia’s miracle!”

Contributions

    Afflicted with Hope / embracingelsalvador.org is one of many outreach ministries at
    Saint Stephen Evangelical Lutheran Church (ELCA)
    30 West Main Street, PO Box 266
    New Kingstown, PA 17072

    Tax deductible donations for support of this work in El Salvador may be sent to the above address.