**Donations through CaringBridge go to CaringBridge. You can find our donation website here: https://www.youcaring.com/jobkatieandchasekemp-816658
All donations will go toward medical expenses and family trips with Job. Any extra funds will be donated to help find a cure!
In late April 2017, Job started exhibiting unusual neurological symptoms. He was acting spacey, his eyes would become unfocused, and he started speaking slower. I called his pediatrician on May 2 when Job told me that he could see two of everything and he heard ringing in his ears whenever he laid down. The pediatrician told us we should go to the ER so they could perform any tests necessary to find the cause.
On May 3rd, Job had an MRI scan at Vanderbilt Children's Hospital that revealed a large and aggressive brain tumor called "DIPG".
DIPG is rare (200-300 cases in the US annually), incurable, has almost no known cause, and has a less than 1% survival rate for 5 years. The median survival time is 9 months from diagnosis.
The tumor is in a part of the brain (called the pons) that controls a lot of the body's essential bodily functions (such as heartbeat, breathing, swallowing, eye sight...). For this reason, the cancer is inoperable, and chemotherapy has no effect on the tumor.
More information about DIPG can be found here: https://www.defeatdipg.org/dipg-facts/overview/what-is-dipg/
Jobs treatment plan and symptoms:
The standard treatment across the world is steroids and radiation. With no treatment, Job was given about one month to live. With steroids and radiation, there are almost no side effects, it will improve his quality of life, and his life span will likely be stretched to an estimated 6-15 months.
Job started taking steroids on May 3rd to help shrink the tumor before radiation. This is a temporary measure to help reduce the inflammation of the tumor. The steroids are helping to relieve some of his symptoms, but they are also making him really hyper and hungry (he will probably gain weight and retain water for a couple of weeks).
On Tuesday (May 9th) he will begin radiation treatments 5 days a week for 6 weeks (30 treatments total). The radiation may cause the tumor to temporarily grow (which is why he is taking the steroids), but it will cause it to shrink significantly in the following weeks. There are almost no side effects to the radiation. Job has a PICC line in his arm, and he is sedated during the treatments, so he should not experience any pain or discomfort in the process.
The doctors are confident that the radiation will be able to shrink the tumor enough that Job will be able to temporarily live a very normal looking life. The cancer will not go away, but there will be a period of time when he will feel and act normal. Job's doctors are estimating that it will be anywhere from 6-15 months, but it is hard to predict. After this, the cancer will return and there are few further treatments that have shown any real promise.
DIPG is being highly researched right now. There are many clinical trials being researched across the country and the world. So far, there is not one study that looks much more promising than another. We are open to researching and we encourage others to do their own research as well. Job's doctors are very open to trying whatever study we are willing to try in order to find out more about this cancer, and, hopefully someday, find a cure. While we are open to discussing our options as far as clinical trials go, we are not optimistic that this will change anything for Job's prognosis. We want Job to have the best quality of life for as long as he is able. We are not willing to move our family across the country/world for a small chance at a few extra months with him. We want Job to be surrounded with love by family and friends, and to experience as little pain and discomfort as possible through this process.
While we welcome everyone to do their own research, we want to stress that our hope is NOT in a cure. Our hope in NOT in attempting to make Job's life as long as possible. Our hope is in the LORD. Our hope is that the LORD will use this trial for good and for His glory. While we fully believe and pray that God is able to heal our son's body, we pray more fervently that God would give him faith in Jesus. "The sufferings of this present time are not worth comparing to the glory that will be revealed to us." Romans 8. We have the hope of eternity with God.
What can you do?
1. Come over. Come hug, kiss, play with, and laugh with our sweet boy. Love on Job as much as you would like! We are open to visitors and would love to see anyone who wants to come by.
2. Spend time with our kids. Our 6 month old son Zeke loves to smile at people, and play, and be held. Our precious and hilarious 3 year old daughter Penny can't fully understand what is happening to her brother, and we want to give her as stable and as normal a life as we can for the foreseeable future. Come and play games with her.
3. Sit with us. Cry with us. Cry without us. We are learning that grief comes in waves. Sometimes we need hugs, and sometimes we want to give hugs to those who are suffering through this with us.
4. If you would like to contribute financially, you can do so here: https://www.youcaring.com/jobkatieandchasekemp-816658
Ways you can pray:
1. Obviously, pray for healing and comfort for Job.
2. Pray that Job's "normal period" would be a long and joyous season for our family.
3. Pray for peace and acceptance.
4. Pray for Chase as he takes time off work to be with the family. Pray that Hoodz will be able to run smoothly in his absence. Pray that the Hoodz team (many of whom are either family members and/or best friends) will be able to fill his absense.
5. Pray for me (Katie) with crohn's symptom. I have been having a flare-up for a couple of weeks and stress can make it worse.
6. Pray for Penny Ruth. Pray that we can devote time and energy to caring, loving, teaching, and even disciplining her. Pray that she will be well loved and cared for during this time. Pray for wisdom for us when we need to have difficult conversations with her.
We want to say thank you to all of you who have donated money to us. We promise that we will use this money well and make these last days very fun and enjoyable for our whole family. This will enable us to do things with Job that we would not otherwise be able to do. Again, we will pursue trials if we feel they will prolong his life. The last thing we would want is for Job to suffer through a painful treatment without much hope of a cure. We will donate any unused funds to finding a cure for this horrible sickness. Thank you! Thank you! Thank you!