I am twelve now. My birthday was in March and I got a trampoline. I had wanted one for a long time but couldn’t have one since my legs hurt a lot. After Covid happened and school was canceled, Carter and I started jumping on it everyday. I felt amazing. Until the day that everything changed. Forever.
One day Momma and I went for a hike in the woods behind our house. We packed a lunch and had a picnic. When we got back my leg started hurting. After a couple days I couldn’t walk anymore and the pain medicine wasn’t strong enough so momma took me to the hospital. They admitted me so they could start some new pain medicines. We knew I had a spot in that leg but when they did pictures it showed that spot had gotten a lot bigger. After that everything just got real confusing.
We started radiation and after a few days I was able to walk good again. Then we decided to start a new trial drug to hopefully keep the spot small. When you do things on a trial you have to do stuff at the hospital all the time for some reason, so we had do scans again. I didn’t care and we weren’t even worried about scans because I had just had them a week ago. But the thing is, my scans showed that the cancer had gotten real bad. In just one week I had ten new spots and they said I couldn’t do the trial anymore. Dr. Weiss didn’t know what to do and he said we should probably do my last MIBG while he tried to figure something out. I was mad and I hated MIBG. This was not what I had agreed to, so I said I wasn’t doing it. They kept saying I had choices, so I was choosing.
After I said that, Dr. Weiss and momma left the room for a while and I just played on my phone. When they came back in the room I could tell that momma had been crying. I told her I was sorry she was sad but I just wasn’t doing it. They both sat down next to me and said we needed to talk. Momma said that she loved me so much and that she would support any decision I made. She said she didn’t want to scare me but that they were afraid of what might happen if I didn’t do MIBG. Momma told me it was my right to refuse treatment but if I did that I would probably die soon. My heart sank. I felt like I couldn’t breath. I fell out of the wheelchair onto my knees and I started pulling on Dr. Weiss’s long, white coat. I cried and cried and I begged him not to let me die. I said I would do anything.
On the drive home I was afraid to close my eyes. I was afraid that if I did, and if I fell asleep, that I would die. Momma said I wouldn’t. She said I was safe right now and that I could sleep. She promised to tell me if they thought I was gonna die.
Late that night Dr. Weiss called to say he found a way to get me the trial drug even though I wouldn’t be on the trial. That meant I didn’t even have to think about MIBG. Momma and daddy cried, they were so happy. I was happy too, but nothing was ever the same again. Nothing can ever be the same again once you realize that when they say you have choices, you really don’t. Not unless your choice is to die.
4 Replies to “Spring 2020”
Heartbreaking and so real. Thank you for sharing your journey. We sent love and healing prayers to your entire family.
Thank you for sharing, Izzy. I am so glad the doctor was able to get that medicine without the trial. You are so loved! So many people are praying hard for you ! Love and prayers as we Declare LIFE For IZZY! ❤❤❤
Oh, Izzy. My heart is breaking for you again. I don’t understand why you are having to go thru this. But I do know. God is good. This is not a pat saying or something to make you feel better. But if God isn’t good than why believe in Him at all? After everything, I have gone thru, I finally had to get to that point or life just seemed hopeless and useless. Your families honest and raw emotions inspire thousands of people. I hope you don’t think I’m making light of all your suffering. Tell God EXACTLY how you feel and don’t worry about the words. He can take anything you say. Then leave all that at the cross. Blessings on you and your family as you journey through life, cancer treatments, and pain.
Izzy, I know you are brave even if you feel you have no choices. I also know you are afraid. I just want you to know, there are worse things than dying. Sometimes just the fact that you are tired. Tired of feeling bad, tired of feeling sick, tired of being poked and prodded, tired of people you don’t know messing with you all the time, tired of the lack of personal space and you’re getting to an age that you would like some privacy. You do have control and don’t be afraid to die. God will see you through and you will have no more tiredness. I’m not encouraging you to give up. I hope you fight to the end. That’s what life is all about, no mater if you live until you are 8 or 88, it’s always a struggle. That’s what it’s been to me and I’m 70. I love you and hope this new medicine works well and that someday I’ll get to meet you. You amazing young woman. Joe