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Jun 15, 2018 Latest post:
Oct 30, 2018
For I know the plans I have for you Hank, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future. Jeremiah 29:11
TJ and I have created this site to help update our friends and family with Hank's story as well as to continue to ask for specific prayer requests. As some of you may know, Hank's growth had slowed down the last eighteen months, so we began testing to determine the cause. At age 8, he has fallen off the growth chart completely, and we were determined to find out why.
A growth hormone stimulation test revealed that Hank's growth hormone was slightly low. However, all of his other pituitary levels were normal. Based on this information, the endocrinologist recommended growth hormone shots. I requested an MRI prior to beginning the shots, and our endorinologist said there was no clinical reason to do one since Hank passed all of his levels. Still, I am a persistent mom and pushed for the MRI, and it was performed on April 14, 2018.
The endocrinologist called us the next day, a Sunday, to inform us that the MRI revealed that Hank has a pituitary brain tumor called a Craniopharyngioma. Craniopharyngiomas are non-cancerous brain tumors. However, they are often thought of as malignant due to the difficulty of their location and rate of reoccurrence. They are very rare, as only 100 children each year in the United States are diagnosed with one. Craniopharyngiomas are made up of part cystic fluid and solid components. Also, a distinguishing factor within these tumors are calcium deposits. The total size of Hank's tumor is approximately 2.8 cm. This is considered small to moderate in size.
After weeks of researching and interviewing amazing neurosurgeons all of over the country, we have chosen treatment through St. Jude Children's Hospital in Memphis, Tennessee. They are the only neurosurgery team in the United States with an actual protocol for these tumors and are the leading experts on this type of tumor. We spoke with neurosurgeons in Dallas, Virginia, UCSF, NYU and John Hopkins. Through this painful and educational journey, it slowly became clear to us on the course and place of treatment. Fortunately, through many great neurosurgeons willing to spend time with us, God has made our path clear, and we are so grateful for that. TJ and I have decided that Hank's full scope of treatment will take place at St. Jude. Dr. Frederick Boop is the Chief of Pediatric Neurosurgery and Dr. Thomas Merchant is the Chief of Radiation Oncology. Together, they are two of the foremost leading experts on Craniopharyngiomas. Please pray specifically for our doctors and their teams.
Hank will have surgery at Le Bonheur Children's Hospital, a partner surgical site of St. Jude, on Wednesday, June 20th. Multiple surgical approaches are possible. However, due to the specific details of Hank's tumor, Dr. Boop will perform a craniotomy. He will remove as much of the tumor as possible without causing damage to surrounding areas of the brain, as it is pressing up against his optic chiasm, hypothalamus and pituitary gland. The goal is to safely and conservatively "debulk" or reduce the size of the cystic portions of the tumor to take pressure off critical structures to make it safer to perform radiation. Because of the location of the tumor, we are specifically praying for no resulting damage to healthy areas surrounding the tumor. If all of it is not able to be removed, Hank will return to St. Jude within a few weeks of recovery for six weeks of radiation to destroy any remaining tumor cells. With a successful surgery and radiation plan, if needed, there is an 80% rate of NO reoccurrence. This is our prayer, and we are believing in faith that Hank will be healed.
Miraculously, the only symptom that Hank has from this tumor is slowed growth. In a vast majority of the cases, this tumor is caught when children present with symptoms like chronic headaches, diminished vision and even hydrocephalus. TJ and I are so thankful that God allowed us to catch it "early" before any permanent damage has been done. We are praying for complete and miraculous healing and that radiation will not be needed.
Hank is doing amazing and by the grace of God is looking forward to removing the tumor so that he can begin growing! He also said he thinks the scar will be cool. He has the gifts of encouragement, faith and wisdom at his young age. We are so thankful for his childlike faith. He is truly inspiring.
Thank you for your support, love and especially for your prayers. God is good and has big plans for Hank. We can't wait to see how God will use this adversity to strengthen Hank's testimony to impact the world for Christ!
We are completely trusting God with Hank's story and we give God all the Glory.