On August 26, 2009 I noticed that our baby girl, Anna, who was just 7 weeks old, couldn’t move her right arm.
Three days later, my husband Joey and I had the worst day of our lives.
Our pediatrician, Dr. Maria Rossell, advised us to go to Texas Children’s Hospital to get her arm checked out. 12 hours and multiple tests later, the MRI showed that Anna had an enormous mass in her chest. A team from the neurology department said that it’s probably neuroblastoma (cancerous tumor) pressing on her spinal cord and that it’s so large, she probably only had a few hours to live without intervention. The tumor took up much of her chest cavity and even spread into her right arm.
I don’t remember the next 10 hours or so. I have completely blacked out that memory. I thought something like this only happened in movies, but I can tell you that it is completely real. I don’t remember anything until the next morning.
Joey filled me in and said that Dr. Andrew Jea, our neurosurgeon, came in and said that he could operate on the tumor to stop it from compressing her spinal cord. However, the surgery was extremely risky because they have to cut through a huge hemangioma that Anna had on her back. In other words, she might not make it through the surgery, and even if she did, she may remain paralyzed in her arm forever, or possibly be a quadriplegic if she survived.
This was also the very night her chemotherapy treatment was supposed to begin. The next morning, on August 29, 2009 at 7:30 am, Joey and I kissed our baby girl goodbye and they took her to surgery.
I know it is horrible to have to say, but I thought that would be the last time to see her alive.
Around 1 pm, Dr. Denise Metry came into our waiting room (we were luckily secluded, as I was a total mess) with the best news of my life. She said they were 80% certain that the “mass” was another internal hemangioma (a benign tumor) — not cancer. This meant treatment with drugs — not chemotherapy, which we had confirmed a week later with a dye test. Internal hemangiomas can be very dangerous, but are also very rare. It is strange because they are very common on the outside of the body, and so often the problems are only cosmetic. Anna had a huge internal one wrapped around her spinal cord, her coratid artery, her trachea and several other vital body parts.
The surgery lasted 6 hours, and by the grace of God, Anna survived it. Dr. Jea and the plastic surgeon on her team came in sweating, but with the wonderful news. He called her (and still calls her) a miracle baby.
After surgery, Anna was very weak and couldn’t drink her milk or move much, although the paralysis was gone. In retrospect (and at the time, really), one of the worst parts of the whole ordeal is that she developed severe blood clots in both legs. The veins were completely blocked off. Her legs were purple, and again I thought we might lose her (or her legs). This was the day after surgery, and for the next few days it was very touch-and-go as far as surviving the blood clots. I spend a lot of time in the Children’s Chapel and pumping in the middle of the night in the empty milk bank.
August concluded in misery.
September 1-7 were extremely critical days in the PICU (pediatric ICU) at Texas Children’s Hospital. Anna had major surgery recovery to deal with and blood clots on top of that.
On September 3, Anna underwent anesthesia AGAIN (third time) to put in a pick line for her blood-thinning drugs. They put a PIC line in her (a major line into an main artery) so that she can receive a continuous dose of Heparin for her blood clots.
On September 7, they finally take her off the Heparin. Taking Heparin itself was a life-threatening situation for someone like Anna, because of the nature of hemangiomas — they are vascular and full of blood and blood vessels. If one of them burst or was accidentally nicked, she could bleed out very quickly with her thinned blood. After the Heparin, she was put on a course of treatment using Lovenox. She got injections of it twice a day.
That afternoon, they moved us from the PICU to the Neurosurgical floor. This was wonderful since Joey and I had been sleeping in a chair in the PICU waiting room since August 28. That hospital room felt like the Four Seasons, I promise! And we got to take a shower whenever we wanted, heavenly!
On September 8, she underwent anesthesia AGAIN (fourth time in 2 weeks) to have another MRI. It is so complex it lasts 3 hours and she is intubated. These were the longest 3 hours ever, since they were looking to see if the mass had shrunk.
The results were given to us the next day — shrinkage! We are so happy that at least she is finally moving in the right direction. Will probably get to go home now!
On September 10, Anna got to come home. I was sobbing as we left the hospital thinking that this day was even happier than my wedding day.
The next year and a half was a blur of injections, with 3 visits a week or so to Texas Children’s Hospital, and medications and physical therapy.
Since that September, life with Anna has been a miracle. I still thank God everyday, even the bad days, that I have her in my life. We have passed the one-year survival of our miracle baby and we could not feel more blessed. We feel as though we have won a lottery with the most difficult odds in history. There have only been 7 cases or so ever in medical history who have had what Anna has had, and I believe she may be the only survivor. Her being paralyzed saved her life because it was a clue to what was happening inside her little body.
The hemangioma is still present in her body. We hope we can hold it off of any major organs for the next 5 years, when her body should be able to outgrow the hemangioma on its own.
About a year before Anna was born, we moved from a small town in Louisiana to Houston. If not for that move and therefore being in a city with Texas Children’s Hospital, Anna would not be here. With a rare condition and only hours until it could become fatal, there is no doubt that we would still be wondering what had happened to our daughter if not for Texas Children’s Hospital.
Dr. Jea and Dr. Metry and all of the specialists, PICU doctors and nurses, everyone in the Hematology department, etc at Texas Children’s saved her life, and we will forever be grateful.