Team Taylor is back for our 3rd year and we very excited to participate in the CureSearch Walk again! We aim to GO GOLD and raise awareness for childhood cancer. In our first two years participating, we have raised just over $10,000! WOW! All because of generous supporters and donors like YOU! We cannot wait to see what our team can raise this year for childhood cancer research....because we want a CURE for the kids!
The Walk benefits CureSearchfor Children's Cancer and the money our team raises supports their mission to fund and support targeted and innovative children's cancer research!We need your help to be successful! Please make a donation to CureSearch for Children's Cancer in memory of Taylor Grace.
Together, we are fighting for the future every child deserves and every parent dreams of.
Thank you so much!
If you are unfamiliar with Taylor, here is an overview of her journey with childhood cancer.(As written on her caring bridge site; Sweet Taylor Grace).
Taylor Grace was admitted to Children's Hospital on June 23rd, 2013...........
We had went to our local ER and I sat there as they told me that our daughter had a very serious infection or Leukemia (Blood Cancer), just by looking at 3 specific lab values--her hemoglobin, platelets, and white blood cells. I signed a sheet to transport her via our own mode of transportation rather than by ambulance. We then waited for our transfer papers, buckled Taylor and headed to Children's....there we were instructed to check into ER. Taylor had a high fever, pain we didn't know about, and was very tired and weak. We spent many hours in ER, more blood tests were run and a Blood Doctor met with us to share that she indeed thought Taylor had Leukemia, and more specifically AML. She was an incredibly knowledgeable and very caring woman. She told us the FISH test and a few other (many) blood tests needed to be completed to get the definitive answers and a diagnosis for Taylor. The plan was to admit her. That evening around 8:30pm we got to the floor. Antibiotics were started and running by IV every so many hours and Taylor was feeling miserable. The next day, the doctor rounding on the floor pulled us into another room, a social worker and a few other staff members were there for support. We sat down. They shared with us that Taylor was diagnosed with AML (Acute Myeloid Leukemia) subtype M5. I looked at Craig who was under the bill of his hat trying to comprehend and take in what we had just been told and as the information fully sunk into myself, I lost it as I tried to say "So we took our daughter from our home yesterday and if I understand correctly she will not visit home or her pets again for at least a month?" It was the truth. That same day she went into surgery for a bone marrow biopsy, a couple biopsies on her legs that happened to turn out being the Leukemia presenting even through her skin. And she had a Hickman Catheter (IV) placed in the center of her chest. That evening chemotherapy began and so did the Cancer journey of our sweet 18 month old daughter.
She completed treatment and was in remission. She was discharged and we returned home 11/13/13. Her last treatment dose of chemo ended on October 23rd, 2013.
On December 9, 2013 just a couple days before Taylor's 2nd Birthday, we were back down at Children's to have her Hickman catheter removed.
From there, Taylor had monthly lab draws and follow-ups to monitor her. We had some appointments at our local clinic and some down at Children's with Tay's primary Oncology team. She was doing well, very well. And very much being Taylor. :)
November marked our 1 year mark from being at Children's, ending treatment. She had her regular follow-up and all looked great. Making it to the 1 yr milestone without showing signs of Relapse is huge. We were informed labs could now be spaced 3 months apart. We asked if we could ease into that and do 2 months for a little while and they said to do whatever we felt most comfortable with. So that was our plan. Her next lab draw would be January 2015.
December 2014 came and shortly into the month Taylor was expressing off/on weird clingy behaviors that were out of the norm. And cries that presented pain, but she wouldn't say when we tried to ask and see what was the matter. The week of her Birthday we knew it was headaches and as the week went on her headaches progressed in frequency and duration. I was very concerned. The day before her Birthday I set up an appointment for our local Clinic and one for the Oncology Clinic at Children's. Over the weekend we needed to decide where to go... Sunday was a struggle, Taylor was in pain from these headaches. I knew Children's was where we were going and in my gut I knew waiting until January for labs was not an option (to me). The appointment was early Monday morning so we headed out very early. The ride went fine and so did her clinic appointment with Myndy. We discussed the headaches. She had labs done which came back normal (big sigh of relief, or so I thought). Myndy did a neuro exam--lights in her eyes, strength from side to side etc. All looked well. She knew that I felt something was not right and Taylor interacted with her, but would not go to her as she always does (another sign she's not feeling well). We also mentioned two short episodes of Taylor walking "drunk." She would say her legs were wiggly and didn't work and she would fall to the floor. Myndy said we could do an Un-sedated CT and if all came back well then we could choose to do a spinal tap under nitrous oxide. We were not thrilled and were in fact nervous to try these procedures without sedation, but it was our only chance for possible answers. They had an immediate opening for CT so we headed over....it was a disaster. So scary for Tay and she screamed and screamed as she was on the CT bed. It seemed like it took hours....when she was done, she continued to cry and we talked to her continuously, trying to calm her down. Her eyes appeared to be zoned, dilated and not focused. I had hoped to settle her down and snuggled her with her blanket and kept talking. Before checking back into clinic, I had planned to use the bathroom and bring Taylor along. We got to the bathroom and I went to put her down and her legs just hung and dangled. I turned her body so I could try to talk to her, I panicked when I saw her face and she looked as if she was having a stroke (drooping on one side and awake but completely unresponsive). I flew out of the bathroom back to Craig and said we need to get down to Myndy NOW! We were immediately put back into a room and staff listened to our concerns and tried to get details of what was happening as they hooked a pulse oximetry to her toe and paged a doctor. Time waiting seemed to take ages and the stroke like face appeared about 4 more times while we were waiting. Each one triggering Taylor (who would not respond to us), to scream and cry even harder. After a few minutes Myndy came in with a colleague, they didn't have good news from her CT, but it was very obvious, we could see it before our eyes. They said it was most likely the Leukemia back, but in her brain...in a very serious way and they also said there could be possible hemorrhaging too (brain bleeding) and an MRI would be done to get better imaging and clearer answers.
The plan was to admit her to PICU and that she may need to be intubated. An MRI would be scheduled to determine if this was indeed Leukemia and what it all entailed. Myndy came with us as we transferred over to PICU. We got into her room and her hand started to twitch behind me, I showed Myndy and Craig. Her hand twitch quickly progressed through to her entire arm and then her entire right side. Were we in a nightmare?? No, this was incredibly real and scary. Taylor was having a seizure and it affected her breathing and all. I talked to her about whatever came to mind and sang 'You Are My Sunshine' endlessly. I stayed calm. Craig did too, he stroked her left leg which was still and stood by my side. Staff and the PICU Doctor moved and worked quickly and very calmly. They began to prepare her to be intubated immediately. When they were ready to put the breathing tube down they told us she would be in good hands and asked us to step down the hall to the waiting area. And they would come get us as soon as she was settled.
And that was how this all began again. It came back, the devil itself. She was diagnosed the next day (December 16th, 2014) with an uncommon Isolated Central Nervous System AML and it was Relapse. In her brain and spine. A few days later we learned the her Relapse was also in her bone marrow (which is where it most often occurs). From there, Taylor began yet another tough and trying battle. After another strong and courageous fight, Taylor's cancer continued to grow despite treatment options tried. Taylor Grace passed away February 11, 2015.
She is missed dearly.