I do not even know where to begin. After weeks of testing in December of 2018, we were finally given a diagnosis right after the new year for our just turned 4 year old daughter Kyra. If you can imagine, she had just had her 4th birthday on 12/22/18 and was admitted to the Children’s Hospital on 1/2/19 with a diagnosis of Stage 4 Neuroblastoma – High Risk. This diagnosis was officially confirmed on 1/7/19, after Ct tests, Lymph Node Biopsy and Bone Marrow Biopsy. Currently, she has undergone 5 rounds of chemotherapy, two central line placements and apheresis; which is that they placed a femoral catheter in order to draw Stem Cells for the future procedures. We are currently going through surgery on 4/24/19 to hopefully remove what they can of the large tumor that is in her chest. We are hoping they are successful in removing the entire mass, since it currently is pushing up against her airway. But, the doctor has also told us it is ok if they are not able to remove it all.
Following surgery recovery we will go into cycle 6 of chemo and will be prepping for her bone Marrow Transplant following recovery from cycle 6 chemo. During this time I will be off of work for what will probably be around 8 weeks, unpaid time off. Following her transplant we will then move into radiation treatment which will be done outpatient 5 days a week, then move into immunotherapy. The main children’s hospital and the oncologists office is about 70 miles from our home, this is where we have our oncology visits, our chemo and will have the radiation and immunotherapy treatments. We travel that trip multiple times a week. The hospital where she had her stem cells recovered and where she will have the bone marrow transplant and be on isolation is about 95 miles from our home, as well as having a pretty hefty per day parking fee that they do not waive completely.
We are asking for any assistance possible, especially including prayers, well wishes and positive energy/thoughts for our daughters recovery. She is spunky and we are hoping that the strength and stubbornness she already had, will carry her through the rest of her treatment. We are only about 4 months into this journey and any monetary donations received will go to Kyra’s medical costs, as well as our travel costs to/from treatments. Thank you for taking the time to read our story.