A Healing Grace
A Healing Grace
Healing families with grace and faithfulness through God.
Below is an overview of Selah's procedures from her 1st diagnosis through her most recent relapse.
Diagnosed January 3, 2016 Stage 4 High Risk Neuroblastoma(In hospital approximately a month).
-Large tumor originated from spine and collapsed top right lung.
-Tumor found in left adrenal gland.
-MBIG Neuroblastoma on left hip bone.
-Bone marrow biopsy revealed disease as well.
-Emergency surgery required two ribs to be cut to remove chest tumor. Bone marrow aspiration and port placement done at initial 6 hour surgery.
-Cycle 1 & 2 Chemos given 5 days straight by infusion 21 days from last chemo Topetecan and Cyclophosphamide
-Cycle 3 & 5 Chemos given 5 days straight by infusion 21 days from last chemo. Cisplaten – Resulted in severe hearing loss and hearing aides - Suffered severe nausea Etoposide
-Cycle 4 Chemos given 5 days This cycle was very painful for her physically because of side effects to bone and muslces. Cyclophosphamide, Doxiorubican, Vincristine - also known as the red devil.
-Multiple GCSF injections given to boost counts for immune system.
-3 to 4 clinic appointments between each cycle.
-2 Fever Admissions from low counts and chemo side effects (Approximate admission 1 week each).
-Cycle 3 & 5 Chemos Given 5 days straight after 21 days from the last chemo.
-February 15, 2016 – Transplant consultation at MUSC in Charleston, SC
-4 day admission to MUSC for Stem Cell Harvest
-Tandem (2) Stem Cell Transplants May 23 thru Sepember 5th, 2016
-Trip to Greenville for IMRT Radiation therapy consultation.
-Trip to Jacksonville Florida for Proton Radiation Therapy consultation.
-Trip back to Jacksonville for 6 weeks for proton therapy.
-Anti – Body Therapy 2 of 5 cycles completed.
-Suffered from severe seizure and PRES (lesions on right front brain and back of brain). Approximate admission 1 month.
-Started DFMO trial at MUSC – approximately gone for one week.
-Drove to Charleston for trial tests and prescription refill once a month from April – September 2017.
-Transferred to Levine Children’s Hospital Charlotte NC September 2017
-October 2017, January 2018, April 2018 and October 2018. Nuclear meds administered each day before scans, MIBG scans and CT scans done next day.
-October 15 2018 Relapse confirmed. Small tumor located on soft tissues behind her heart.
-October 16, 2018 Consultation with surgeon at Levine.
-October 17, 2018 Biopsy resulting in collapsing left lung and leaving 4 more puncture scars on her left side.
-October 29, 2018 Cycle 1-4 of Antibody therapy along with Irenotecan and Temadar chemos given.
-Severe C-Diff started as a result of good bacteria killed by chemos.
-3 emergency admission to Greenville Hospital as a result of severe allergic reaction and fever.
-One set of scans between cycles 2 & 3 revealed more than 50% of tumor dead.
-Scans after 4th cycle revealed dead tumor (NED) No Evidence of Disease PRAISE GOD!
-Returned to Jacksonville Florida for MRI and Radiation simulation and consultation after 3 denials and 4 appeals from insurance company.
-Returned to Jacksonville 1 week later for MRI of spine and 12 Proton Radiation Therapy Treatments.
-April 6, 2019 We are on our way to New York City to Sloan Kettering to begin a Neuroblastoma vaccination trial. This involved 7 trips to NYC and one was driven April 2020 during Covid shut down.
-Selah underwent scans every three months from July 2020 until present in Charlotte, NC.
-February 19th a tumor larger than a golf ball was found in her lower pelvis. She had surgery for tumor removal on February 25th. Bone marrow March 5th and March 9th will be doing a surgery to tack up her ovary.
-Proton radiation simulation begins on Wednesday March 17, 2021.
-Tentative start date for radiation is March 31, 2021. She should be scheduled for 12 treatments Monday thru Friday. They just found out that they want to add chemo to the radiation too.
-Antibody will begin after radiation in Charlotte. It will be administered one week of every month for a year.
At the present time Selah's mom can't work due to Selah's treatment schedule. Living off one income, medical expenses, travel expenses, and bills are mounting up!
Selah's family could really use your help. Any amount you can give is greatly appreciated! Donations are tax deductible. If you are not able to donate, please offer up some prayers for Selah and her family.
From Selah's Mom:
From Selah's Mom:
As I look at what my beautiful little girl has gone through from age 4 (turned 5 February 2016) until now, I am in awe of what God has brought her through! Deuteronomy 31:8 The Lord Himself goes before you and will be with you; He will NEVER leave you nor forsake you. Do not be afraid; do not be discouraged. Isaiah 61:3 and provide for those who grieve in Zion to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. I am so thankful that I have learned to put on the garment of praise because Psalms 22:3 But You are holy, You who inhabit the praises of your people! When His presence fills us, ALL mourning, All fear have to flee!!!