Esther, the little girl who was silent even when she was being poked with needles or frightened with chemo is now starting to chatter and laugh. She is really ticklish.

Thursday Esther went to BJC Children’s Hospital with Naomi and Karen Smith to have Esther’s PICC (peripherally inserted central catheter) insertion location in her arm checked. Naomi is in charge of cleaning Esther’s PICC line on a daily basis, a task which she approaches gently but meticulously.

Earlier this week on Wednesday, Naomi and Esther got out of the house for some lunch and a little shopping. At Global Foods in Kirkwood Naomi was happy to find the ingredients for Kenyan cooking, including the collards and tomatoes to make sukuma wiki, a vegetable stew, and maize to make ugali, a polenta-like dish cooked in a thick pot.

Happy with those finds, Naomi decided to try her luck and wanted to know if the store carried goat meat. “Do you want fresh or frozen?,” the butcher asked.

Thursday night Josphat made a Kenyan chicken stew mchuzi for dinner. Esther – who for the most part has been existing on whole wheat bread and chai with a few French fries thrown in – cleaned her plate.

Tuesday for Esther and Naomi was a day far removed from the previous five days of chemotherapy at BJC Children’s Hospital.

A photographer from the Webster-Kirkwood Times arrived at 9 a.m. to photograph them for a feature that is running this week.

Then it was on to Dr. Tom Black’s dental office to take care of Naomi’s persistent toothache. As mentioned in a previous post, Judy Featherston, office manager in Dr. Black’s practice attends the Rock Church where Get the Work Out, Inc. is based.  Judy knew Esther’s story, and when she received a call regarding Naomi she prevailed on Dr. Black to provide treatment pro bono.

It turned out that Naomi has five teeth that need to be removed, including three impacted wisdom teeth. Judy was immediately on the phone to the office manager of an oral surgery practice, asking her colleague to convince her boss to provide the extractions pro bono.

Judy, Dr. Black, and Janice Kayser the dental hygienist gave Naomi and Esther the royal treatment. Esther took over the hallway at Dr. Black’s office, sitting in a Big Bird chair with her chai, bread, and a Ranger Rick magazine. She walked out with three rubber balls and a toothbrush, courtesy of Judy.

Later in the day at the Smiths’ house something very special happened. Esther began speaking  English words with Hannah and Gabe Smith. Then she began dancing with them. The quiet, shy little girl is beginning to show quite a personality.

Waiting, and the accompanying boredom and worry,  is one of the worst parts of the chemo treatment, both for Esther and for the adults who are looking after her. Because Esther speaks no English, Naomi as her guardian and translator was not able to leave Children’s Hospital for almost a week. The best Naomi could manage was dinner in the hospital dining room with Josphat and their friend Mildred. Esther became uncertain and teary even during that brief respite.

Sunday afternoon,  hopes of going “home” to the the Smiths’ house suffered a disappointing setback. Esther’s medical team, concerned about complications from the  last dose of chemo, decided to hold her over Sunday night. But Monday morning at 11 a.m. Esther was cleared for release.

Another “God” moment in a long string of such events surrounding Esther happened Monday. Naomi suffered from a toothache the entire week she was confined to the hospital with Esther. On Monday a call was made to the office of dentist Dr. Tom Black to see about getting Naomi in pro bono.

When Judy Featherston, office manager for Dr. Black, heard the beginning of the story, she stopped the caller in mid-sentence. Judy attends The Rock (Rock Hill Baptist) Church, and had already met Esther. Naomi will be seeing Dr. Black Monday morning.

Saturday was day three of Esther’s chemotherapy. The doctors are already noticing improvements in her tumor, Josphat said.

As nice as the surroundings and staff at Children’s are, Esther and Naomi are ready to go “home” to Karen Smith’s. The hours drag on endlessly. Saturday’s boredom was broken by  visits from Jake and Amy – friends from “The Rock” (Rock Hill Baptist Church), and Mildred, a friend of Josphat and Naomi from Kenya who now lives in St. Louis.

In the middle of the somewhat surreal hospital atmosphere, Josphat and Naomi were facing very down-to-earth worries  about their father Andrew back in Kenya, who has suddenly developed  a very serious intestinal blockage and faces surgery Sunday.

To pass the time Saturday, Esther watched cartoons, drew, photographed everyone and everything with her new pink digital camera,  played with visitors, and snoozed. She has eaten very little in the hospital, partially because of the nausea in the hospital and partially because food here is so unlike what she’s used to.

She had just finished a bread and jelly sandwich and some chai, which is popular in Kenya and which she loves, when nausea from the 4 p.m. chemo that was being administered overtook her despite anti-nausea drugs that had been administered to her.

Undergoing chemo may be boring and unpleasant, but it’s a big part of what Esther’s here for… and it appears to be working.

Esther is handling the chemotherapy well. She appears to have no nausea so far and was smiling and playing with a young visitor late Friday. Naomi said that there seems to be some reduction of the tumor in her airway. Esther slept Thursday night without the rasping breath that usually accompanies sleep for her.

Because Esther’s father is deaf, and because she is naturally fairly shy, it is difficult to get her to express what she needs verbally. She communicates a lot by facial expressions and by signing. She speaks Kiswahili, the official language (along with English) of Kenya. According to Josphat, because of Esther’s father’s deafness she never learned to speak the indigenous “mother tongue” spoken in her local area.

In order to get her more acclimated to being in the U.S. and to express to her medical team what she needs better, Naomi is coaching her gently toward speaking some English.

In an effort to urge her on in this vein on Friday,  her playmate and their parent gave their best shot at saying their own names in Kiswahili, “Jina langu ni… “

A broad smile crossed Esther’s face. With coaching, in little more than a whisper, she said, “My name is Esther.”

Thursday was a good day for Esther. She was feeling perky and ready for mischief.

The Olson Family Garden

Word came back from radiology that her bone scans are clean: the doctors feel that the cancer is confined to the neuroblastoma (tumor) in her neck.

Esther is enjoying the people and the environment at BJC Children’s. The staff is wonderful to her. She explored the views of Forest Park from the Olson Family Roof Garden on Children’s eighth floor with Naomi and  Josphat. She also spent time in Chidren’s well-appointed McDonald’s Family Room.

The highlights of her day came when she received her own pink digital camera and a lighted fairy princess wand. On a trip to the St. Louis Zoo last weekend Esther and a friend shot over 100 photos. Managers at the Crestwood, MO Best Buy store heard Esther’s story and gave Get The Word Out a 20 percent discount on the camera. The wand was a gift from some of the many people who have taken Esther into their hearts.

Esther started taking photographs with her new camera as soon as it was out of the package. The princess also found time to use her new wand to work her magic on those in the room with her.

“The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
‘The Lord is my portion,’ says my soul,
‘therefore I will hope in him.’”
– Lamentations 3:22-24

It has been a difficult week. This week Esther’s medical treatment for the neuroblastoma in her neck began in earnest.

Monday was a quiet day of making peanut butter sandwiches and doing the dishes with Karen and an evening spent playing and having dinner with a young friend.

But on Tuesday Esther’s medical team began the very difficult process of beginning her healing.

Esther is the height of a normal five-year-old, but she weighs only 32 pounds. The massive tumor on her neck intrudes into her airway. The anesthesiology team at BJC Children’s  was concerned that she would not survive the anesthetic if surgery was attempted to remove or reduce her tumor.

Chemotherapy and radiation therapy are the other two treatment options open to her medical team . In order to facilitate chemotherapy a  peripherally inserted central catheter (PICC or PIC line) needed to be inserted. On Tuesday, Esther’s PICC was inserted in a vein in her arm, then threaded through increasingly larger veins, toward the heart.

The same concerns about her reaction to anesthetics made it necessary to perform the PICC insertion procedure without sedating Esther. There was some difficulty making the insertion, but Esther was very brave, as she has been through all of her medical procedures.

On Wednesday Esther’s chemotherapy began. Her medical team decided to admit her to Children’s because of concern that the chemo would cause swelling and block her airway.

Esther got to be a little girl in St. Louis this weekend as the city experienced amazing 73-degree weather in early November. Josphat, Naomi, and their friend Mildred – who grew up with them  in Kapenguria, Kenya but now lives and works in St. Louis – joined some St. Louis friends to take Esther to the St. Louis Zoo.

Esther at the Zoo's outdoor chimpanzee enclosure

Esther showed an incredible interest in the animals, particularly the snakes and other reptiles in the herpetarium. She kept grabbing a digital camera and was very pleased with the photos she took of snakes, turtles, and some of the animals in the primate house.

She continued to display her love of French fries and chicken nuggets at the Zoo’s Lakeside Cafe, experienced her first carousel ride, and was mesmerized by the giraffes.

Esther visits the giraffes

But later at a showing of the Disney movie Aladdin at the History Museum,  the little girl who has been unfazed by IVs and MRI tunnels became teary during the opening sequences of the scary Grand Vizier Jafar and the dark and spooky Cave of Wonders.

While Esther has been described as an “old soul,” she is still very much a five-year-old little girl. Saturday she got to just be that little girl, far away from all that awaits her as she begins her treatment this week.

On Friday, November 6, Esther won the hearts of the staff at BJC St. Louis Children’s Hospital. She displayed  quiet calm even as she was poked, prodded, stuck with an IV, and placed in the MRI  Scan tube.

The team at Children’s responded by showering Esther with attention and gifts. It was obvious to Karen, Josephat, and Naomi that the staff of Children’s is very taken with Esther.

By evening she was ready to hang out with a new friend at the Smith’s, munching  on French fries, and photograph the people who were photographing her.

On Wednesday evening November 4, Esther Tudo, age 5, arrived in St. Louis.

Esther and a new friend at Karen Smith's house in Webster Groves, MO.

It was a journey that began many months and thousands of miles ago. Esther lives with her adopted family, the Kendagors,  in Kapenguria, Kenya. Her father who is deaf, was unable to care for her. Her mother is dead.

Earlier last year a tumor began growing around Esther’s carotid artery.  In June, Karen Smith, founder of Get The Word Out Missions met Esther for about an hour. Karen was moved to reach out for help for Esther.

Since then, people from all over the United States and Kenya have been called by God to be part of Esther’s story. Dr. Jeff Michalski of Washington University Medical School took it upon himself to become Esther’s advocate . Dr. David Wilson of BJC St. Louis Children’s Hospital completed the myriad of paperwork and coordination with ancillary services to get her treated. Doug Vanderslice, CFO of BJC Children’s remained ever-helpful and positive.

When it became difficult to obtain Esther’s medical history for Children’s, Peggy Hart of Atlanta, who had missionary connections in Kenya, contacted her friend Isabella Mbai, who heads the nursing faculty at the teaching hospital in Eldoret, Kenya where Esther had been treated. Isabella obtained the records.

After BJC Children’s Hospital doctors agreed to work pro bono and the hospital agreed to pay for Esther’s treatment it appeared that there would be a delay in issuing a travel visa. Denise Hasty, vice president of government affairs/public relations at the Associated General Contractors of St. Louis contacted her friend Katy Disinger,  constituent service representative for U.S. Sen. Claire McCaskill. Within a day Sen. McKaskill sent a letter to the Counsel General at the U.S. Embassy in Nairobi, Kenya, who immediately expedited Esther’s visa.

Nearly $4,000 in plane fare for Esther and her guardian was collected in a few days. The Rock Baptist Church in Rock Hill, MO raised $1,600 in one Sunday collection, with individuals donating the rest.

Thursday Esther had one test at Children’s Hospital. While Esther had an appointment scheduled in David Wilson’s office, Dr. Wilson, who heads pediatric oncology at Children’s and is an associate professor at Washington University School of medicine, made a point of coming down to the waiting room to meet her, her stepsister and guardian Naomi Kendagor who traveled with her from Kenya, and Karen Smith.

Thursday evening Esther was playing and smiling at Karen Smith’s Webster Groves home, where she and Naomi will stay while she is in St. Louis for treatment.