by Cheryl Warren Brugel '90
We have chosen to not give ear to men only but rather to truly seek the face of the Lord and His wisdom in making any kind of decisions…. For Emmeline, ONLY GOD, has the right answers!! Waiting upon God is not a BAD place to be, but rather a GOOD one. How many times in Scripture are we admonished to WAIT on the Lord---and even to wait patiently on Him.
These words, sent out via e-mail to over 600 people in early August of 2002, clearly expressed the sentiments of Jeff ’00 and Julia ’01 Schumacher in the wake of learning that their daughter Emmeline, just 9 weeks old, had a malignant brain tumor.
Every first time parent enjoys keeping track of each milestone and each memory, carefully recording each new phase in a baby book. Pediatrician appointments are carefully kept as growth charts and developmental stages are discussed. And pictures are regularly taken to forever capture the changes that occur so rapidly. For most new parents, these moments are taken for granted…an expected and exciting part of life with a new baby. Yet, for Jeff and Julia these moments brought their first awareness that something was possibly wrong with their precious newborn, Emmeline.
A few weeks after birth, Julia began noticing that Emmeline would “arch her back regularly and look to one side.” Initially, the pediatrician was not concerned. However, when at her nine week appointment, her head had grown from the 60th to the 90th percentile and her soft spot was bulging, the doctors sentiments changed and she ordered an ultrasound. For Jeff and Julia, this initial test ushered them away from the expected world of life with a newborn and into a world most parents fear to venture.
The ultrasound revealed a cyst in Emmeline’s brain. An MRI was scheduled for the next day. Reeling with the shock that something could actually be wrong with their precious daughter, Jeff and Julia gathered with friends that night to pray. Upheld by these prayers, they took their daughter for the MRI on Friday. When the neurosurgeon saw the ultrasound and later the MRI, the news grew worse. It confirmed a tumor in Emmeline’s young brain so serious that the neurosurgeon recommended doing surgery that very day! In just 2 days time, Jeff and Julia had gone from innocent decisions such as deciding if their daughter needed to be fed to deciding if their daughter should undergo potentially life-threatening surgery. They asked for a 2nd opinion. The 2nd neurosurgeon differed in opinion somewhat—he suggested putting Emmeline on steroids over the weekend to reduce swelling and then doing surgery on Monday. For Jeff and Julia, this was what they needed…time to prepare themselves, time for their parents who are missionaries overseas to arrive.
On Monday, Emmeline underwent brain surgery. The doctor was only able to do a “subtotal resection,” meaning he could only remove part of the tumor. He told Jeff and Julia that the tumor was “blending with brain tissue” making it very hard to tell where one ended and the other began. For three days following surgery, Emmeline was not herself. Her eyes were open but she would not track objects or people. When on the third day she began tracking with her eyes, Jeff and Julia were elated. They knew their daughter was not blind!
A couple days after surgery, during a post-operative visit, the surgeon shared that Emmeline’s “recovery was remarkable.” Later that evening, as Julia’s Mom reflected on these words, she realized that those were the exact words she had used when praying; she had asked God to make Emmeline’s recovery “remarkable” so that all would see God’s hand. Just one week after surgery, Emmeline was able to come home, and Julia was able to continue nursing. The family clearly felt God’s hand upon Emmeline’s life!
Pathology reports revealed a malignant “Ependymoma tumor” on the left side of Emmeline’s brain about the size of a small orange. An aggressive tumor, doctors felt sure it would return within a year. About 1 ½ weeks after surgery, Jeff and Julia met with the oncologist to hear his recommendation for treatment. They were concerned he would strongly push chemotherapy as that had been his initial suggestion; therefore, before the meeting, they prayed for clear direction…but when they no longer knew how to pray, they chose to turn their prayer time into a praise time. Julia remembers thinking, “If I don’t trust God, who am I going to trust? Myself, some other god, positive thinking? I have nothing…no hope outside of Christ.”
On August 17th they met with the oncologist who examined Emmeline and was very impressed. He shared that the tumor board had evaluated the tumor and felt that it was within the borders of the cyst and not invading other parts of the brain. He had also contacted oncologists from across the country and there was no clear consensus on how to proceed. Some recommended chemotherapy as this would be a typical response, yet this type of cancer had not shown good response to chemotherapy. Others thought observation and waiting were in order because Emmeline was too young for radiation. Radiation was not usually begun until the age of three. Only one hospital in the country—St. Jude Children’s Research Hospital in Memphis, Tennessee—had a trial program for young children with Ependymoma tumors, but it did not begin until one year of age. Again, the family saw God’s hand at work: Chemotherapy was not pushed on them—in fact, it was not even seen by the oncologist as a cure-all. So, in the absence of a definitive course of action, they felt at peace to observe Emmeline and wait until she turned one. In the meantime, a 2nd MRI was ordered which amazingly showed no cancer. For Jeff and Julia, this only further confirmed their decision to wait and see how God would work.
At nine months, Emmeline had yet another MRI. Although only the size of a small pea, this MRI revealed more tumor in the brain. But the neurosurgeon was surprised by the location. It was not in the original spot; it was in a new, more operable location. However, this MRI showed something even more dangerous—a tumor now on Emmeline’s spine. This was like a death sentence. Jeff and Julia had no idea the cancer could spread that quickly. While they waited for the next test—a spinal tap to confirm the MRI findings—Jeff and Julia searched the Scriptures for verses on HOPE. They knew that in God there is always hope, and even in their trial, God was giving them the ability to thank Him for His assurance and promises.
Much to the doctor’s surprise, the spinal tap came out clear—no tumor cells in the spinal fluid! Still certain there was tumor, a 2nd MRI was ordered, but this MRI now showed no tumor. While doctors might have felt the initial MRI was misread, Jeff and Julia feel the Lord healed Emmeline of this deadly tumor. Julia shares, “Going from thinking that Emmeline was going to die to just having to have surgery to remove a pea-sized tumor in her brain…it seemed like nothing!” When she was a year, she had this 2nd surgery, which was a total resection, and was then referred to St. Jude to see a doctor who specialized in Ependymoma tumors. There they offered a trial program where they would not have to pay anything for treatment or care. This would even include a place for Jeff and Julia to stay.
At St. Jude they were introduced to Dr. Thomas Merchant—a doctor they came to love and trust completely. He recommended radiation as now Emmeline would be able to handle these treatments. He shared that the risks of radiation were minute compared to the risks of no treatment; radiation was also the only option for treating this type of cancer. Therefore, for the next 6 weeks, Emmeline underwent radiation daily. After radiation, she only needed to return for follow-up appointment every 3-4 months.
This past Spring, Emmeline turned five and Jeff and Julia rejoice that she continues to be cancer free. Since leaving St. Jude around 15 months of age, her young life has not been without struggles…but Jeff and Julia continually see God’s hand on her life, providing every step of the way. She has undergone two shunt placements and three shunt revisions. At 18 months, Emmeline began speech therapy. Julia’s prayer was for Emmeline to be caught up on speech by Kindergarten. This seemed quite a hurdle as Emmeline’s speech was very behind. After little progress for 18 months, the Lord opened the door for insurance to cover a different therapist. This therapist made great progress with Emmeline…and today Julia shares that Emmeline is “completely verbal and will begin Kindergarten in the Fall of 2008!”
Preschool revealed that Emmeline struggled with fine motor skills. She is now doing occupational therapy to help her with writing and fine motor abilities. She also will be meeting with a psychologist as she struggles with normal responses in situations. Julia shares that it is hard to be sure if “behavior issues are a brain thing or just a normal kid thing. Is it personality, a fallen world, or a medical issue?” As parents, they continue to struggle through these issues, continually seeking the Lord for wisdom and guidance.
Recently, Emmeline began taking growth hormone—yet another big decision Jeff and Julia have had to wrestle with. Yet, God has given them peace that it is now the right time to begin these shots so that Emmeline’s growth can be caught up by puberty. These shots cost $1000/month but God allowed their insurance to cover the cost. Emmeline, who understandably struggles with shots, has handled these daily shots well as they have proven not to hurt.
God has also provided through Ohio’s “Bureau of Children with Medical Handicaps” grant. This fund has provided financially for most of what insurance has not covered. This has helped with therapy and medical costs and even allowed Jeff to be able to choose a less costly insurance option at work.
And as only God can do, he also provided a perfect way to balance out all the medical attention Emmeline was receiving. He surprised Jeff and Julia with twins when Emmeline was 2 ½. Julia feels strongly that God blessed them with the twins as they are “the best medicine for Emmeline. Socially they are good and they are active.” They provide Emmeline the interaction she needs as she learns and grows.
For Jeff, Julia, and Emmeline, the journey continues daily. Yet they continue to see God’s hand in remarkable ways. Julia shares about a particular couple who live next door who have become “grandparents” to her children. They have babysat for the twins and love for the kids to swim in their pool. They have told Julia that they know “God put Jeff and Julia next door.” The amazing thing is that this couple is unsaved, yet the wife’s brother is a believer and has been praying for years for them to get saved. Jeff and Julia have joined in that prayer…praying that they also can be used to lead this couple to Christ.
While Jeff and Julia still have the joy of recording milestones and memories in Emmeline’s baby book, they have been entrusted with so much more. God has used this experience to record on their hearts his comfort and his love for both them and little Emmeline. They have come to appreciate deeply the 2nd verse of the Gaither song, “Because He Lives,” which proclaims, “How sweet to hold a newborn baby and feel the pride and joy he gives. But greater still the calm assurance this child can face uncertain days because He lives.” Jeff and Julia find peace knowing that God will lead them through each day and each decision as they face an unknown future with their daughter.