I have contemplated sending this note directly to Angela and Adrian, but decided it would be better served to write it here for all the parents in the future who hear those dreaded words, "Your child has an inoperable brain tumor called DIPG."
Please understand it is not my intention to deny hope to anyone. I hope and pray every single day that a cure for DIPG is found. Right now, I'd be happy for a better chance of surviving longer than the normal prognosis of 6 - 12 months from diagnosis. These are strictly observations and comments from MY point of view and things that I personally have had happen to me.
Angela & Adrian,
I have struggled for days on how to write this message to you, and I'm still not totally sure of all that I want to say.
I am the mom of a DIPG warrior. I have been where you are now with treatment. I know the emotional, physical, and spiritual ups and downs of this battle.
I'm going to share with you some of the things I wish someone who had been there had told me when Caleb was diagnosed. Some of these you may already know. Some you may not. Some of them may make you laugh. Some may make you cry. Some may bring you to your knees in prayer.
1. PRAY without ceasing!!! Rejoice in the small things.
There may be days when you have a hard time seeing any reason to rejoice. No matter what happens with AJ, one thing will always remain true - God is still in control. He is still on the throne. This diagnosis did not surprise Him. He has a plan that is greater than you could imagine. Though we don't know why this is happening, God does. God didn't cause this to happen, but He can use this situation to make something good come of it.
2. Take as many pictures as you can to remember this time. You will be glad later that you did.
I didn't want to take any pictures during the first couple of months. I couldn't stand to look at what the steroids had done to my sweet boy. He gained over 40 pounds in 5 short months because of the steroids. If it hadn't been for my husband, I wouldn't have as many pictures to look at now.
3. Record his voice as often as you can. In videos. On your phone. However you can. While he still has a voice to use.
Caleb's speech was impaired because of the tumor. I so wish I had more videos or recordings of his sweet voice. The last recording I have of him was taken by my sister-in-law just a week before Caleb died. He was singing "Awesome God." He struggled through every word, yet he made it through. I treasure that recording even though it is not the voice of the little boy I remember.
4. Make frequent videos with him doing the things he loves. The time will come all too quickly when the tumor robs his ability to do those things. You will want to remember those moments.
5. As soon as AJ is finished with radiation, take a trip somewhere fun as a family.
I still wish we had taken Caleb on one more fishing trip or taken him on his first camping trip. But our time ran out so very quickly.
6. If you haven't already done so, contact Make-A-Wish. Stress the seriousness of the situation and get them moving quickly to fulfill AJ's wish.
Caleb wanted to go to Disney World to fight Darth Vader and so his little brother could meet Mickey Mouse. We contacted Make-A-Wish in December 2010, but didn't hear back from them until near the end of January 2011. I don't think we (or the people we were dealing with at Make-A-Wish) really grasped the gravity of the situation or just how quickly things could change. By the time they started getting information on what his wish was, we were put on travel restrictions and he couldn't go. We weren't able to have Caleb's wish of going to Disney World fulfilled. Some day, we hope to take Caden to Disney and remind him of his brother's wish. Maybe, Caden can fight Darth Vader at Disney World on Caleb's behalf.
7. Never, Ever Give Up! Yet, know when it is time to let go.
The hardest thing I have ever done was knowing it was time to change my prayer from, "God, heal him," to, "God, if You're going to take him, please take him soon. Don't let him suffer any longer."
Please know that I am praying for your family. Allow God to hold you in His arms and lean on His strength. It is the ONLY way to get through this time.
One who has been there.
You can follow AJ's story on Facebook at: AJ Soars, Prayers for AJ.
They have also set up a GoFundMe account to help with expenses at: AJ Soars by Angela Bailey Peterson
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
|Caleb administering his own anesthesia before radiation.|