Family of "Miracle Patient" Share Their Story and Gratitude
"There are so Many People and Programs We're Thankful For!"
In the Fall of 2010, Tim Farmer was just like any other 9-year-old boy. He loved Legos, Pokémon and hanging out with his big brother, Paul. Little did his parents know that the nagging soreness he commented about every now and then in his lower back would turn their lives upside down.
Anne Farmer shares their family's story in her own words, including Tim's remarkable journey, hospital staff who went above and beyond to give back to the family, how their experience at Children's Mercy inspired generous giving, and why "Children's Mercy was where they were meant to be".
Looking back, it all happened so quickly. We went from thinking Tim had pulled a muscle in his back, to his pain escalating to electrifying one night. He landed in the ER and got an MRI two days later. Tim had a tumor on his lower spine. We were in shock. The ER doctor told us to brace ourselves. That would be a major understatement for the road ahead.
I'll always remember the day Tim underwent the MRI. Right after we received the devastating results, we visited Tim's primary care doctor to decide on treatment options. We live in Arkansas and my husband, Don, thought we needed to be at Children's Mercy because of the hospital's reputation and because our family is in Kansas City. I'm so grateful he was thinking clearly because I sure wasn't. We went home to quickly grab a few things and we arrived at Children's Mercy that night.
Home Away From Home
Room 14 on 4 Henson was our home for the next five and a half weeks. I literally didn't step outside for weeks. If those walls could talk! We were terrified and in shock. We met Dr. Manalang, who was in charge of Tim's course of treatment. Intuitively, we trusted her.
Tim had surgery to get as much of the tumor as possible. He initially seemed better after surgery, then deteriorated quickly — losing his ability to smile, speak clearly and walk. Pathology came back and we discovered Tim had a rare and fast-growing tumor of the central nervous system called AT/RT (Atypical Teratoid Rhabdoid Tumor). The tumor also was invading his brain.
The prognosis was extremely poor. It became a question of: Is there enough time to even start chemo?
At our darkest moments, Dr. Manalang was at our side. I appreciate that she 'tells it like it is' without sugar-coating things, yet is so positive and uplifting. I'm also thankful she steered us in the right direction. When we asked her what she would do if it was her child, she told us. That was comforting.
Tim started a grueling 51-week treatment regimen: 17 rounds of chemo and 23 radiation treatments. All but two rounds of his chemo required hospitalization. We had several serious setbacks — fevers, dehydration and tricky bladder complications to name a few. It was excruciating to see Tim in so much pain. It was all we could do to hang on.
Yet, amazingly, after just a single chemo treatment, Tim's improvement was noticeable. As scans continued to show the tumors shrinking, Dr. Manalang was blown away and so were we.
A Turning Point
Initially, Tim suffered through treatment and became a bit of a hermit. He didn't want to leave his room until January 2011 when he took part in the Pet Pals Program.
He had never been comfortable around dogs so we were surprised when he wanted to go. It was the first thing he was excited about in months! He looked forward to it all day and made us get him ready early, which took about an hour since he was unable to do anything for himself.
Needless to say, Tim loved it! The beagles, Bella, Lucy and Bruno, were his favorites. It positively impacted him so much that we now have a beagle.
Pet Pals was a turning point. After that, Tim took part in every Child Life activity he could. Another favorite was Hospital Bingo with its hilarious volunteers.
There are so many staff members who were instrumental in Tim's recovery and in helping us keep our sanity. It's impossible to name them all as we saw so many throughout all different specialties.
Yet there's a special place in our hearts for the Nurses on 4 Henson, especially Stacy, Amber, Ryan, Brittany, Danica, Jenny, Julie, Ann, Kelly, Lindsay, Mary and Katie. Sometimes the little things matter most. Mary was our gatekeeper when we couldn't handle visitors. Katie made Tim a special card with the Beatles on it when she was his nurse on Christmas. We still have that card. We still talk about our nurses on a regular basis; and also, Crystal, Anthony and Karen (care assistants); David (in clinic); Kelly (Child Life) and his first physical therapist, Angie.
Tim was seen a great deal by Dr. Silvey, who was a fellow then, during in-patient stays early on. The chemo going directly into Tim's head usually made him very sick, and Dr. Silvey was excellent at that procedure.
We're also thankful for Tim's surgeons, Dr. Hornig and Dr. Clough. We owe so much to not only Dr. Manalang — our favorite person on earth — but also to her Nurse Practitioner, Jennifer Wulfert. If only Jennifer had a dollar for every time she had to talk me off a ledge! So patient. So incredible.
After a year of treatment and essentially being at the hospital, we celebrated with an end-of-chemo party. Amazingly, scans showed no evidence of growth/disease. Tim was thrilled. We were too, but we were scared out of our minds to end chemo and radiation ... as crazy as that sounds. At least with treatment we had an action plan to fight.
Honestly, we thought we were just buying time; not that Tim would actually get a cure. Yet, every three months the scans held. Here we are ... almost six years later. Dr. Manalang calls Tim her "Miracle Kid"! Tim also has worked hard to be where he is today. For instance, he went from being completely wheelchair-bound to walking. It's amazing! We have so much to be thankful for.
We appreciate our family who supported us every step of the way. We stayed at my mom's house in Prairie Village when Tim was receiving daily radiation and wasn't hospitalized. I remember my sister, Mary, getting Tim to radiation in a blizzard. No one was on the roads. He thought it was an adventure! Mary has been a major donor to the hospital after seeing the excellent care Tim received.
We also appreciate everyone at Children's Mercy who helped our family. You don't ever want to spend a year in a hospital with a sick child, but we are grateful to know all of these amazing caregivers. This is where we were meant to be. Thank you from the bottom of our hearts!