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Somewhere Over the Rainbow

High school graduation…triumph, joy, success, fear, wonder, excitement…the emotions nearly overwhelm both child and parent. The unknown looms like a giant playhouse shadow, scary yet thrilling and full of promise. I’m so grateful to have experienced three high school graduations with my children, feeling the overwhelming joy of knowing they were on the way to enjoying the world of adulthood, moving on to marriage and experiencing the joy of their own children.

Our first grandson came into this world in January, a bundle of joy and pride that made our hearts swell with the most enormous love like that of when our children were born. My friend Molly told me before Luke was born that with grandchildren, everything is doubled because you love your grandchild but you also love the love that your child has for their child—so the joys are doubled and the fears and sorrows are as well. We didn’t understand exactly what that meant until we saw Malorie holding her baby for the first time.

Our family has been fortunate in that all three of our children grew up relatively unscathed and healthy. There were a few broken bones along the way and the normal childhood illnesses but none of them ever suffered anything serious. It is something that we could easily have taken for granted as we watched them run across soccer fields or twirl on gymnastic bars or reach high to catch a lacrosse ball flying through the air.

And now we pray each day that our grandson, and the grandchildren who will be coming along behind him, will also grow up running and jumping their way through childhood right into adulthood, healthy, strong, whole.

We don’t take that for granted because we have known others who weren’t so fortunate.

We met Chris and Robin when we first attended our church, Living Hope, in late 2001. Their daughter, Alexa, was 4 years old and we soon learned her story and how our entire church had rallied around that family. For Chris and Robin, the dreams of their precious daughter having a normal childhood were crushed when she was diagnosed with Neuroblastoma at the age of one. While other toddlers were discovering ice cream and chocolate, Alexa was existing on feeding tubes and intravenous chemotherapy.

While her little friends were enjoying Mother’s Morning Out, Alexa was undergoing radiation to her tiny body, far away from home at Sloan-Kettering in New York City.

Excerpts with permission from the Caringbridge journal kept by Robin Rohrbach (Alexa’s mom):

Thursday was a very difficult day. Alexa was taken down to the radiation floor and given the anesthesia…”sleepy medicine” as she calls it. The anesthesiologist (“Dr. Bob” to Alexa) observed low oxygen saturation levels which meant she was having some difficulty breathing, so they stopped the procedure and did not complete the radiation. Needless to say we were a nervous wreck, but at least they were in the room with Alexa when all this happened and they responded quickly. The Dr. also made the decision to cancel the afternoon radiation treatment. He wanted Alexa to let her little body rest.

When the other little girls at church were coming in with ribbons and bows in their hair, Alexa was watching her beautiful blond tresses wash down the drain, with smiles and giggles.

Alexa’s hair is falling out fast. She began “shedding” on Wednesday and it is going, going, gone. She is such a great sport. She keeps me from feeling so bad about seeing her cute blonde hair go. She looks up at me with a huge GRIN and says, “Mommy, hair falling out,”…and then laughs. What an inspiration.

While most little girls enjoy having Mommy and Daddy put them to bed each night, Alexa spent years traveling back and forth to NYC for treatments, being separated mostly from her father and occasionally from her mother.

We arrived safely in New York late last night. 11:48pm to be exact. Thanks again to our friends at the Corporate Angel Network. We received a free flight from a corporation that was heading back to NY after the executives attended a Nascar race and dropped someone off in Atlanta. We are so BLESSED!! After a 45 minute car ride into the city, I think we probably got to sleep at 1:30 am. We were pretty tired most of today. We had the chance to unpack, get settled in, and take an afternoon nap. 

Alexa is so thrilled that we are in a room at the Ronald McDonald House that is right across the hall from her best friend, Breanna. I think that we are glad to be so close, too. They can go back and forth, from room to room to play, with less supervision by “us” parents!! 

Alexa and Breanna
Alexa (R) and her precious friend, Breanna. These girls are loving each other in Heaven.

While her friends were enjoying playdates, Alexa was already learning about loss and how to grieve.

Good evening to all of you.
We arrived safely on Saturday afternoon. As some of you may already know, Alexa’s first and best friend, Breanna Burnop, passed away last Thursday night. Her parents, Craig and Colene, are doing remarkably well…..considering their situation. They said that Breanna seemed to go peacefully and they were all three together for her last moments on this earth. We decided to rent a car from the airport and go upsatate New York Saturday night so that we could see them for a few hours on Sunday. The funeral was held Monday morning at 10:00 am……..the same time that Alexa started her antibody treatments. We felt really bad that the timing of this didn’t work out better so that we could make it to the furneral. I’m glad we were able to make it Sunday to visit with them at their house and pay our last respects to sweet Breanna at the funeral home. We made it back to the city just in time to return the rental car and get Chris to the airport for his evening flight back to Atlanta. Alexa and I took a cab back to the Ronald McDonald House.

Alexa and Rachel
Alexa (R) and her sweet friend, Rachel. Rachel was also diagnosed with neuroblastoma and passed away during the Rohrbach’s time in NYC.

While her friends were enjoying bouncy houses and cake every year, Alexa’s family was excited to have a normal birthday at age 3, surrounded by her beloved family.

Alexa’s 3rd birthday, a family celebration that cherished a moment of normalcy.

We are spending some time now getting ready for Alexa’s birthday. She turns three on April 23rd…Easter Sunday. We just feel like this is such a sign of HOPE for us. She is really excited for her birthday. She said the other day, “Mommy, it’s taking too long.” This is a VERY common phrase for her lately…you know how impatient toddlers can be. Last year she was in the hospital for parts of the month of April due to chemotherapy treatments and we were just lucky enough to get out of the hospital the day before her birthday. We scrambled to get a cake and some decorations because we thought she would still be a patient in the hospital. We did have a small family gathering…but no kids invited due to her extremely low blood counts. The year before, on her first birthday, she was very lethargic and we took her to the hospital the Monday night after her birthday weekend and diagnosed on that Tuesday with cancer. So you see…we are all VERY excited for a “normal” birthday and party with family and a handful of little “friends.”

In 2001, sweet Jenna was born and Alexa became a big sister, her favorite thing to be. Alexa was able to start kindergarten and maintain minimal treatments for a couple of years, with PET scans monitoring her progress. But while it seemed she had survived cancer, her little body could not withstand the ravages of the cancer treatments and her lungs were giving out and in 2006 she was hospitalized again.

While her 8-year-old friends enjoyed their summer, Alexa lived in the ICU for several weeks on a ventilator, and doctors began to plan a way to help improve her lung function.

In the radiology dept. they can actually hook her up to a big camera/screen and watch the line inside her body while they work on it and try to get it situated just right in her vein. The tough part for dear, sweet Alexa was that parents are not allowed in this sterile environment while they do this procedure and she was very upset by this. They had to eventually take out the first PICC line and put another one in her other arm which finally worked! Yeah God! When she came out of the room and we met her in the hall she was in tears and crying more than I have seen her cry at a hospital in a very long time. When we finally got her back to her ICU room and settled all comfy in her room, she still shed some tears and asked for her white board to write on. She wrote us the following message, which still breaks my heart to think about: “Earlier was one of my worst nightmares!”

During the week of July 31-August 4, we will be traveling to St. Louis for an evaluation for a bi-lateral lung transplant for Alexa. Also there, we will be visiting Dr. Lenke, a world-renowned spinal surgeon to evaluate Alexa’s progressive scoliosis for potential surgery. Her deformity is probably causing more problems for her pulmonary function and breathing. We will find out from them if she is eligible for either procedure and, if so, which will come first.

Daddy and daughter
Alexa and her Daddy.

And tests revealed the news was not good. How to choose? How to know the right decision? It was a Catch-22.

The news from this scoliosis doctor was quite a mixed review and our emotions are still very up and down. The bottom line is that Alexa has large curvature of her spine (58 degrees) and it has been a rapid progression from last October until now. She also has a lordosis curve (that means her spine is curving inward toward her chest) causing her to arch her back rather than have a normal “hunch” in her back like most people have. This means she actually has about an inch and a half between her breastbone and her spine. This is an extremely small amount of space for her lungs to be. She really just doesn’t have enough room in there for her lungs to work properly.

Dr. Lenke is the best at correcting these types of spinal problems and can do the surgery but he is not sure if the lung doctors will think that Alexa could handle the surgery. He also thinks that it might be hard to have a lung transplant at this point simply because there may not be enough room to put the lungs in her body with the spine in the way. It may take the spine to be repaired before they could think about transplant but, then again, it might be difficult to fix the spine with her pulmonary function capability.

Alexa for Halloween
Alexa spent Halloween in the hospital while she underwent halo traction for 3 months during 4th grade.

So while Alexa’s 4th grade classmates studied math and English, she spent 3 months in halo traction at Scottish Rite Hospital, in an effort to “stretch” her spine to strengthen her lungs enough so that she might survive the spinal fusion surgery which would allow her lungs to function better. After the months of traction, up to 20 lbs. pulling on her spine and multiple episodes of elevated heart rate that landed her in the ICU, Alexa traveled back to St. Louis to be evaluated for the surgery. All the while, her positive attitude and her sweet, precious smile continued to radiate to those around her.

The information we received from the surgeon regarding the surgery was not what we wanted to hear. He said that Alexa is a very high-risk patient and that he has never done this surgery on someone with such low lung function numbers as she has. Just having surgery, of any sort, will make a person’s lung function decrease, so Alexa will have a very difficult time. She will be on a breathing tube (ventilator) during the surgery and then afterwards. The concern of all the doctors is that Alexa will have a very hard time getting off the ventilator after the surgery. The worse case scenario could be that she remains on a ventilator and we have to wait here in the ICU for lungs for a lung transplant! We hope and PRAY that this is not the situation and that Alexa is much stronger and stays free of any infection afterwards.

Beating the odds once again in her young life, Alexa underwent successful spinal surgery on January 18, 2007. She spent several more weeks in hospital in St. Louis and then was allowed to complete several weeks of painful rehab at Scottish Rite in Atlanta. Despite everything she had been through, the spirit in this remarkable girl remained undaunted.

Today was a bittersweet day for us. We had to say goodbye to many of our CHOA (Children’s hospital) friends here. They made our stay so much better. This morning Alexa had her last exercise group and as is the tradition with this group she got to give her “Words of Wisdom” as a graduation speech to the rest of the group as she was getting ready to leave.

ALEXA’S SPEECH

“I want to start by thanking my Mom and Dad, for always being there right by my side. Also, I would like to thank my Grandparents and Aunt and Uncle for helping me and my family during the long time I was in the hospital. I would especially like to thank my loving sister, Jenna, who every day, always came and visited me, played with me, and always was sweet! I would also like to thank all of my therapists and rehab staff for encouraging me along the way.

I’m thankful for God being in my life and giving me strength to fight and get better and Graduate! God made a miracle out of me, and I want everyone to know how special He is to me. I wouldn’t be where I am without Him by my side. 

I want to tell all the other friends at rehab to have a positive attitude, never give up, and to always find something to be thankful for each day. I’ll miss you all! 

Good Luck and God Bless You!”

Alexa's graduation from rehab

But while her classmates began to enjoy the freedom of 5th grade, getting close to middle school, Alexa was still struggling.

She is doing very well considering where she was a year ago. However, her endurance is not what it used to be. She continues to get out of breath when walking just a short distance. She needs to get a ride in her wheel chair to the cafeteria at her school for lunch every day as well as other places throughout the school that are farther from her classroom. She still requires oxygen and she sleeps with a bi-pap machine (similar to c-pap) every single night. Her oxygen saturation levels still drop periodically through the night when she is asleep, especially when she is in her deepest REM sleep. Chris and I have to take turns sleeping on a trundle bed beside her bed in her room late night when her pulse oxy machine starts to beep because her oxygen levels are low. We still live a very difficult life, but I was reminded again, just today how great we are doing today. We just have to look at where we have been to appreciate this time in our lives.

And while her friends were starting their second week of 6th grade, Alexa was again in the ICU on a bi-pap machine, struggling to breathe. She was able to go home after a few weeks, hoping to get back into school soon. And then the devastating news that cancer cells were found in her spine. She rallied to fight, her positive attitude intact but her body weak and tired. More radiation. More chemo. And it was too much. After ten years of battling cancer and treatment complications, on November 28, 2008, Thanksgiving Day, Alexa’s tired, worn out little body gave up the fight and she left this earth on angels wings.

It is with deep sadness and a broken heart that I write this. Alexa passed away around 2:15 am this morning. She was rushed to the hospital by ambulance after we called 911 around midnight. She began to have more difficulty breathing and we could not get her oxygen saturations up high enough. We suctioned her, bagged her, changed her trach, did everything we knew how to do and then called for help. We are in shock and despair. We had an absolutely wonderful Thanksgiving Day at home together and Alexa ate at our table surrounded by her family. We will update more details when we have them. Please pray for us right now as we have so many decisions to make. God give us strength to get through this. We know He has a plan for her life and for us, and that His plan is perfect, but it doesn’t feel perfect at all to us right now.

The world lost a special girl today and we will never be the same.

Alexa Grace Rohrbach passed away at the age of 11, her inspiring life cut far too short by the monster that is childhood cancer.

This past May, Alexa’s classmates graduated from Harrison High School.

Alexa would have been 18 years old.

She would now have just started her freshman year of college.

Perhaps you would have received her graduation announcement. Perhaps an invitation to a party in her honor. You would have written a check, enclosed it in a card, and marveled at the miracle of her life.

And yet, she never got that opportunity, the unfulfilled promise of an amazing child with so much love and compassion and wisdom to offer this world.

And you never got to send her that gift.

In honor and memory of this remarkable young girl, I am asking you to donate what you would have given her as a high school graduation gift if you knew Alexa—and even if you did not.

Because none of us are exempt and none of us knows when the monster will strike.

It could be your child.

It could be your grandchild.

It could strike tomorrow. 

The numbers are staggering:

Did you know that more kids are diagnosed with childhood cancer than diabetes, aids, asthma, and cystic fibrosis combined? And children get different cancers than adults. Adults tend to get lung, breast, prostate and colon cancers. Kids tend to get brain cancer, solid tumors and a different kind of leukemia than adults.

And children need different treatments than adults. Kids bodies are regularly growing and changing. Better treatments are needed so kids can avoid the harsh side effects from treatments not designed for them.

Did you know that every 36 minutes a child will be diagnosed with cancer in the U.S.?

And yet, less than 4% of the U.S. government’s TOTAL FUNDING for cancer research is designated to childhood cancer.

That’s close to 46 kids each and every day who will hear the words “You have cancer.” 

One of those could be your child.

One of those could be your grandchild.

It could strike tomorrow. 

Rally Foundation is different. Unlike other cancer charities, they send 94 cents of every dollar donated to research specifically for childhood cancer. It’s the cancer fundraising organization that Alexa’s parents have determined is worthy of hours and hours of their time over the years.

Please donate something—anything—just imagine if 5 million people gave just $5—we could literally change the scope of childhood cancer research.

Thank you!

Every 36 minutes a child in the United States is diagnosed with cancer.

Let’s do our part to improve research funding and eradicate childhood cancer so no other child has to suffer as  Alexa did—and so that other parents don’t have to grieve the loss of a child.

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Les

Friday 25th of September 2015

Thanks for sharing this heart breaking but amazing story of love and loss. We happily donate to our local chapter each year.

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