Our story today is an amazing story of laughter, joy, trial, courage, and submission to perfect will. This is a cancer story in the blessed lives of Jessica Erin Taylor’s family, and how nothing is left to chance when it comes to this incredible little girl.
You may have heard of Jessica through the Facebook site, Prayers for Jessica, God’s Little Warrior. First, you really have to meet Jess. She is an outgoing 11 year old little girl, a wonderful daughter, big sister, natural leader, volunteer with the Special Blessings Ministry at The Woodlands United Methodist Church, an honor roll student, a talented musician who plays both the cello and viola, a champion martial artist, gifted volleyball player, gymnast, and surfer. She is truly a source of great joy in the lives of all that she touches. Jess is blessed with a kind heart, an adventurous spirit and the gift of self-assured faith.
Some months ago, mid-May 2015 after a volleyball practice Jess complained of shin pain to her parents. As she is the sporting type, her parents chalked it up to shin splints and the pain subsided for a week or so. Then, one Sunday night she began to have pain in her shin again, but this time it was more severe and there was swelling. The next morning arrangements were made to see her pediatrician, and upon examination she recommended that they head to the ER at Texas Children’s Hospital. Her concern was infection or a deep vein thrombosis.
So, Jess spent her last week of the 5th grade in TCH where they performed ultra sounds and MRIs, and eventually found what appeared to be a small abscess on her shin. The diagnosis was Osteomyelitis (bone infection). The same week she had surgery to aspirate the abscess, and she was enrolled in a clinical trial study under Dr. Kaplan. Her condition improved, but the lab was never able to grow any bacteria from the sample taken during surgery, and as the family has learned, a sample was never sent for pathology. After two weeks, Jess and the family were sent home with antibiotics and crutches, and told to follow up.
Then one Sunday in late August, during Confirmation class she indicated the pain was back. It was the day that she was being presented with her Bible, and as she stepped up on the stage you could see the grimace on her little face. That night, Jess was in the same agony she felt back in May and this time she had a fever. Monday followed which was the first day of school. The family had decided the night before that she would stay home, but that morning her father, Chris heard noise coming from her room. She was still trying to get her clothes together for the first day of school but there would be no school for Jess, just another admission to TCH and more imaging which showed that the abscess had progressed, followed by a more intense surgery on August 26th.
The night before surgery some dear friends of the Taylor’s, Kent and Cathy Gilmore, came to visit. They brought their Bishop and a small gift for Jess on loan. The Bishop asked if he could perform an anointing, and as they all gathered around Jess’s little bed he asked Kent for the oil. Kent dug deep in his pocket only to reveal a tiny vial of oil, and began to explain how it had traveled to be there that night. He told the story of how his brother had gone to Israel some years ago, and had visited the Garden of Gethsemane. For those not familiar, the Garden in Gethsemane is where the Apostles gathered the night before Jesus’ crucifixion. It is the place where Jesus surrendered to God’s perfect will asking- “Father, if you are willing, take this cup from me; yet not my will, but Yours, be done.” Luke 22:42.
Kent held the vial up to the light to reveal the contents, and as he carefully plucked the cap off he went on to tell how the drops of oil within had been collected and blessed in the Garden on the very spot where Judas kissed Jesus’ cheek as he handed him over to the Romans. As he placed the oil upon Jess’s head they all closed their eyes and held hands, and Kent prayed…
“Father, we come to you in this hour of great need. We ask that you reveal that which is hidden, we ask for restoration, courage, and submission to Your perfect will…”
Even though the lights in the room were dimmed, as the Bishop uttered those words, Chris (Jess’s dad) felt a bright light come over them. “I could see it through my closed eyelids, and I recall having an instant uneasy calm that is too difficult to describe but I can tell you that in my life, up to that singular moment, I had never felt as connected to God.”
The next day, on August 26th, surgery ran about an hour longer than expected, but Jess did fine, and the family celebrated Jess’s 11th birthday that night. Several days later, pain free, and ready to run, figuratively, she was released from the hospital with a PICC (Peripherally inserted center catheter) line and some heavy duty antibiotics. Before departing, the family went outside and released all of her balloons with a prayer, and as they drove north, Dad looked at her and with the soft reds and purples of the sunset crossing with the clouds as she looked quietly out the window, they exchanged some words and Dad thought about what a simple joy it was to have all of his family under one roof.
The next several hours were a blur for Kelley and Chris as they took turns tending to the needs of Jess, her little sister Frances, and trying to reason with uncertainty.
They were met with…the schedule is packed and the earliest times are next week for the PET, CT, and the following week for the US, EKG, ECG, and then three weeks out for the biopsy of which are already scheduled… Chris told them to check the schedule again and that they’d go anywhere day or night.
So, the nurse left the room and shortly returned and said, “I jumped back in and they have had a couple of cancellations. The CT, US, EKG, and ECG are scheduled right now. The PET and biopsy are scheduled for this Thursday and Friday.” Chris and Kelley were elated the schedule was moved up and both said God was telling them something.
Over the coming days, they wrestled with mourning the past, and coming to grips with the reality of the now and just set about the duty of the task. For Kelley and Chris, it was all they could do to put on a smile, and hold back the tears of fear. Then one night which was the Friday after the biopsy, the girls were busy making cookies, and Chris was looking for a reason to get out of the house and went to the store. As he pulled out of the parking lot, he felt God calling him to come to His house.
Chris walked back through door of the house, and asked Kelley if she thought they should talk to Jess about what exactly was going on. Kelley told Chris that Jess brought it up already and they’ve been talking about it. Jess had brought it up.
He continued…”I don’t use the word “miracle” lightly, but God clearly spoke to us by opening that schedule, by opening the doors of that church, by putting in Jess the composure and stubborn faith that only comes directly from the Holy Spirit. He was taking us beyond our intellect, and our abilities to comprehend, to negotiate, or to plan. He was taking us past the point of breaking from exhaustion, and by doing that He was asking us to stop showing up with worry in our hearts, and to start being mentally and emotionally present.”
Chris shared that we can’t negotiate. We can’t take a magic pill. We can’t force a result, or make it happen. God doesn’t give us illness, but He does give us joy and peace through the storm which is not to say that we don’t still spend moments chasing surrender, but reminding ourselves that time is passing while we are busy crying down memory lane, it sure does make the drive much shorter.
The diagnostic studies came back, and the imaging showed cancer in the left shin. The CT of the chest also showed what appeared to be a small spot on Jess’s lungs. The TCH Oncologist explained that it could be an indication of metastatic disease. While very small, they explained how they wanted to take her into surgery to remove the lump later in the week on Thursday.
Keep in mind that this was Tuesday morning, and the lung surgery was scheduled for Thursday morning. While they didn’t mention it to anyone at TCH, on Tuesday afternoon they called MD Anderson for a second opinion on the off-chance they could work Jess in on short notice. When they were told that the specialist Jess needed to see was out until next week, the family thought it must be God’s will for her to have that lung surgery. Late Tuesday evening, Chris received a call from a nurse at MD Anderson who explained that the specialist that Jess needed to see had come back into town early, and that since Jess had all of her diagnostic studies done she would be willing to see her Thursday morning. They made the appointment knowing that they couldn’t be two places at once, and prayed for God to decide. Then, Wednesday afternoon TCH called, and asked to reschedule the lung surgery for Friday… sign delivered; The Taylor’s had an extra day!
The family met with the team at MD Anderson, and they explained that the spot on Jess’s lungs was so small that it could not be sectioned for pathology, and that it could simply be some scar tissue from an old respiratory infection. They did not advise one way or the other, but did say that they would not perform it in their facility. “Well, what to do?” Chris thought. “We would start chemo on an accelerated schedule, and watch the confirmed site on her leg… at least now we know where it is.”
The initial course of treatment will last one year, and will include chemotherapy, radiation, and removal of the tumor site on her left leg followed by more chemotherapy. To date, Jess has had several rounds of chemotherapy, one additional surgery to remove the PICC line that she received at TCH, and replace it with a Port that is better suited to handle the chemotherapy drugs.
After having surgery to remove the tumor site, she was presented with several options –
* Rotationplasty (YouTube it)
* Limb salvage (replacing the bone with metal rods)
* Allograph (replacing the bone with cadaver bone)
She was so clear when they presented the options. Her response…
In between chemo and the surgery she has been hospitalized several times with fever, and at times she has been in great physical peril, but even in those moments she has taken her beautiful spirit to lift others that she has met along the way. On Christmas day, she was hospitalized with fever, and Jess spent a stretch of a week until New Year’s Eve struggling. One morning, she was feeling better, and was worried about one of the little girls that she had befriended. The other little girl was very worried about a coming surgery scheduled for that afternoon, 12/31.
Jess had been talking about it for days. “She’d better not back-out again”, Jess said. Jess was actually feeling good enough that morning to go the little girl’s room and hang out. Upon returning, Jess reported, “She’s really nervous, but I think she’s going to do it. I hope that we get to pray with her before they take her down.” She said.
So, here the family was waiting for Jess’s release papers because, “Who wants to spend New Year’s Eve at a hospital?”, Chris commented. Her counts had recovered so it was time to go.
While still at the hospital, they had received some news worth celebrating while there. In repeating the CT, there was no metastases in the lungs this time. Jess went back and forth to her friend’s room in between moments of being interrupted by doctors visits. During those minutes, she was sitting on the edge of her bed fighting with her little sister, and watching for a sign that patient transport was going to wheel her friend down to the OR. Then….“They’re here Momma. Let’s go pray with her!”
The Spirit put that prayer in Chris at that moment for a number of reasons, and he’s quite sure the little girl in the bed was not the only heart that was softening. The surgery went fine, and with the delay in Jess’s discharge paperwork the girls were able to catch up in post-op recovery just before the Taylor’s left for a night of New Year’s Eve fireworks.
After service, Kelley told Chris how Bryce had stopped her earlier in the hall, and told her how important Jess has been to her little girl Grace, who is partially blind, and how Jess has helped Grace build on her communication skills. Bryce also asked for the details around the coming surgery, date, times, surgeons, etc… As it turns out, Bryce is an anesthesiologist at MD Anderson, and would be working the day of Jess’s surgery. Bryce had access, and wanted to be the familiar face in the OR with Jess as she went under, and to be there when she woke up.
Fast forward a week and the family is making the rounds for surgical clearance. What was scheduled to take an entire day only took half. They just showed up and they kept taking Jess early. Jess wanted to bake some cookies for the nurses, and with that extra time she was able to do so. So, cookies in hand, they headed up to MD Anderson the day of surgery. They were able to pack 14 people into the little OR prep room which probably violated at least a few rules. However, the OR Director, Jenise, who is a close fried of the Taylor’s for 20 years, said they’d always make an exception for Jess. Chris said it was quite a party and a tearless departure.