What do you do when the thing you most feared is suddenly your reality?
Today we got the results of the pathology report, and it doesn’t look good. Chase has an atypical teratoid/rhabdoid tumor (AT/RT), which is a very rare kind of cancer (rare = about 30 new cases per year). Did we really think that Chase was anything other than rare?
The neurosurgeon noticed, on Chase’s original MRI scan, that there was some light-colored shading on his spinal column, which has now been interpreted as the tumor spreading.
It seems like the most likely course of action will be a 51-54 week regiment of chemotherapy and radiation, during which time he will have a treatment every 3 or so weeks in the hospital.
This is hard news to try to process. Am I ready to watch my child go through this? Do I trust that God is sovereign, even over an aggressive malignant tumor? The words (and melody) of a song by Mark Altrogge has been going through my mind today:
Whatever my God ordains is right
In His love I am abiding
I will be still in all He does
And follow where He is guiding
He is my God, though dark my road
He holds me that I shall not fall
And so to Him I leave it all.
Here’s a clip of the song with this verse:
What this looks like, only God knows, but what we do know is that God IS sovereign, and while the tumor is a tragic physical manifestation of the fallenness of mankind, the child is a beautiful manifestation of the image of God, and in this child we have joy.
So sorry to hear about the pathology. I’m praying and trusting and agreeing with you that God IS sovereign!
You don’t know me, but Megan Gabriel emailed me about your story. I wanted to let you know that I am praying for Chase, for you, your other children, and the doctors. I’m so sorry to hear this diagnosis. Praying for God’s healing hand to be upon Chase.
I have to admit I never came across AT/RT during my time on hem/onc. If you guys want me to see if Vandy has had any cases, I can get in touch with my old team. I’m so sorry you’re walking this road. Praying for you all.
So sorry to hear this news. Thinking of something from Sunday’s sermon…”we were not made for this” and “this is not our home.” Praying for moment by moment grace and peace.
praying for you and yours
Praying this morning for the Lord to carry you today.
One morning as I prayed for you guys in tears with the Olympics in the background, I thought and asked the Lord that in four years, when the summer Olympics come again, this long battle would be fought and won, and Chase would be well again, and the story you have to tell is of God walking you through the valley of the shadow of death but being with you every step. That’s my prayer, dear friends.
Ellie….you may not remember me, I knew you when you were a bit younger…a friend of your mom & dad, and a member of Grace til I moved to Wisconsin.
I have been praying for your little guy Chase since I heard about the finding of a malignent tumor. Because of this latest post you made about Chase’s condition, I feel the need to recommend taking him to St. Jude’s Children’s hospital in Tennessee. Where I live, here in New Richmond, WI, we have had quite a few little children with cancer. A little girl, Avery, was 2 when a brain stem malignant, inoperable tumor was found. After going to Children’s Hosp. in Minneapolis, then the Mayo Clinic, a doctor had them go to St. Jude’s. Avery will be 5 yrs. old now. There are no costs for any treatments at St. Jude’s !! Incredible doctors and other staff. Just a suggestion…but since this is a rare cancer….please have your husband or your dad give St. Jude a call and tell them what is going on with Chase.
Also, Caring Bridge is an awesome website that reaches people all over the world….Besides everyone leaving encouraging messages for you and for Chase, there are many options for people to use this site. You will connect with people who have gone thru or are going thru what your family is. People can also make donations. Just another suggestion……………
Keeping all of you in prayer and for the decisions you have to make. What a beautiful family you have. Please say hi to your mom & dad for me.
Love in Jesus
Jeannine
Bob and Ellie,
Praying with you and trying to process this too as a parent. I rejoice to see you clinging to and trusting God through this. Much love, the Baergens
Hey, this is Andrea’s mom…praying for you guys.
Our Lord is certainly upholding you in His mighty hands. You are such a testamony to us all. Our prayers will continue for Chase, your family, and the medical staff.
Praying every day for Chase, for his healing, and for you! Betsy (Jean W.’s sister)
My name is Kristen(Bob and Gerty Kletts youngest daughter). i am not sure if you heard my story, when i was going through it. This last october i lost my daughter mae rose at 19 weeks, in the process almost died three times, two surgeries and 16 units of blood, I came out of our difficult season of life. I believe you are in yours now. We are praying for you. i know your seson if different than mine, but if i can ever do anything let me know. I really do mean it too. So many people offered when we going through things , but not all stepped up on the promis they said. alot of people around me said the wrong thing many times. have grace for them even when it makes your blood boil. remeber to grieve where you are. you have your little boy and there is always hope, but your life has been turned upside down, your dreams for your three year old for the end of summer are now different, the pictures are now different. That is ok, but still grieve. Grief is like a roller coaster, but the best thing you can do is ride it up and down to make it through the whole ride ok. take care of you too. Go for a run, punch a pillow, and keep letting God know how you feel, good or bad. I wish many blessings on your family. There is always hope. kristen
Hi. I’m Dhurata from Albania. I read about your situation and I’m feeling so bad. My husband and I are praying for you and Chase. May God give you peace and hope through this challenge.
“And we know that for those who love God all things work together for good,g for those who are called according to his purpose “
He holds me that I shall not fall
And so to Him I leave it all
Amen.
Continuing in prayer for you all.
I am praying for you guys!
Dearest Ewoldt’s
You are being mentioned to The Father all day long. For mercy, for healing, for strength for peace.
I wish I could just sit there with you. Kath’s tumor was considered rare and they were not sure how it would respond to chemo too. Chase is a fighter…..didn’t you say he punched the Neurologist? Priceless. He is going to fight this with God’s strength. I pray for you all daily.
Love you,
Tricia DeJong
Dear Bob and Ellie. Just know that little Chase and all of you are being lifted up in prayers daily. God is sovereign and I know you are holding on tight to that promise. Your family is in a battle right now. May I share my favorite battle passages whenever I have faced them.. 2nd Chronicles 20 where Jehoshaphat defeats Moab. Verse:15….For the battle is not yours,but God’s. There is so much more in this Chapter that I clung to. Verse 12…”We do not know what to do, but our eyes are on you.” I will put little Chase on the prayer list of a very dear prayer warrior who is 83 years old. He prays all day. God bless you and your family, and you know that our church family is sending prayers to the heavens as we speak. In His Arms. Cathy
so sorry to hear the news. you don’t know me–saw the post on Kelly’s Korner. I have a friend whose 6-year-old son is in the middle of treatment for a rhabdomysarcoma. thought you might like to connect http://claytonwins.blogspot.com/
You don’t know me either — i’m a friend of Angela Walters. I’m praying for you all, too, and i agree with all of the above!
Kathy
I am from Spring Lake Harvest Bible in Michigan. Chase is in our prayers. Keep looking up! God is faithful. May He continue to give you the strength that you need for each day.
Love and prayers.
Pat
Just wanted you all to know that the Carter and Ney families will be lifting you up in our prayers! Much love to your whole family!
Chyrise and Ken Ney
(sister of your aunt Sharon )
I’m so sorry to hear of Chase’s AT/RT diagnosis. Your family is in my thoughts & prayers!
Missionary friends of mine found out in January their 2 year old daughter, Phoebe, also has AT/RT. Amey, the mother, has a blog called “An Atypical Miracle” where she writes about this new journey their family is on fighting cancer – http://atypicalmiracle.com/