18yr old son with AML

Hey all,

I am trying to get my 18yr old son on board with reaching out, but so far, he is in his own world right now. A week after HS graduation, he was diagnosed with AML. Over the last 6 weeks, his diagnosis has expanded to: AML M2 with FLT3 ITD and TKD (yep, dual mutations) and NPM1 and normal cytogenetics. Only 1-2% of all AML cases present with dual mutations of FLT3. His doctors are unsure of how these mutations will respond together. So far, his induction chemo seems to have worked well, though he hasn't had a follow up BMA yet. That is Monday, and then he will start his first consolidation round. He is going to have a BMT as his risk of relapse is 90%. I've been a little worried about him lately as he seems to be in a bit of a funk. Hoping it is he is just down about losing friends as opposed to a relapse as he's sleeping more then normal, even for him. I know exhaustion can be a sign of Leukemia, so I'm hoping it's not that. His blood draws have been good since he was discharged after spending a month in the hospital during his induction phase. A relapse this quickly would not be good. I'm anxiously awaiting the results of his BMA next week.

Despite having his world turned upside down, he seems to be keeping a really positive attitude. The hardest part is losing his bf. He pretty much bailed on him after his diagnosis and now is moving 4 hours away. We are encouraging him to get out and do things as his health permits. His immune system is up, so he has gone to the movies, went out to watch fireworks and visited with friends.

There is nothing harder as a parent, then watching your child go through something so huge as this. OK, so harder would be him not making it. But hopefully you knew what I meant! How can I help him? I'm trying not to smother him, but he takes careless risks without thinking about the consequences. So it's hard for me not to hover.

Thanks for talking to a mom. :)

Comments

  • 5 Comments sorted by Votes Date Added
  • Hello AML Momma,

    My name is Amy and I am a APL Survivor. First I want to welcome you to the club that no one wants to be a part of. My Dad is a caring loving man, but when I was diagnosed it was hard for both of us. As I'm sure its the same for you and your Son. I expected my dad to support me in different ways than he actually did. I held him up to expectations that were not feasible for him. Not to give you the wrong impression of him, But he was somewhat distant from me and my treatment. He continued to look to me for answers for my own disease. Which I am sure you're aware of your own supporters doing the same  once your son was diagnosed. Even though you become an expert pretty quick its frustrating because you don't have all the answers.

    As far as were your son is coming from, and I can only assume by my own experience. We feel so out of control when cancer enters our lives. We find ways to feel more human, more like our old selves everyday, but we never succeed due to cancer. As for him taking reckless risks I feel like he feels like: "What do I have to Lose" Or maybe he finally has the courage to do things his old self would never do thanks to cancer. I have found since my diagnosis I say what I mean, Ask for what I want, Do what I say and what I want. Sometimes without regard to others. Its not be cruel or selfish but we are finally putting ourselves first. Cancer takes so much from us we just want to find our way back to our own life.

    Just continue to affirm to your son that you're there for him. Ask him how you can help him. You are just as helpless in this situation as him. I know as a mom you want to have all the answers for your son, but the fact is you don't. Know one does. Just ride the wave and find a reason to smile each day.

    I hope this helps. I wish you love and support on yours and son's journey. Remember Cancer is a numbers game and sometimes the numbers don't add up. Miracles happen everyday. Just stay positive and celebrate small victories daily.

     

  • i dont think you need to worry about sleeping alot as a sign there are times where i get super tired from random days or getting out and doing things all day and then ill be sleepy or tired for a couple days its just his body building up strength again from treatment.
  • Hey. 

    You're son sounds like the boy-version of me. Fresh out of high school and ready to move on to a new stage of life and boom, rare, off-the-wall crazy AML. I get the whole FLT3, NPM1, and I have a rare translocation too. My AML is supposed to happen to 60+ overweight, heavily-addicted smoking men. Nobody even has tried to explain how an otherwise healthy 18 year old girl wound up with it. 

    Friends abandoning you? Yes. I have had that, too. They all leave for college and make new friends, and that's really hard when you're stuck in either a pediatric hospital filled with small sick children or a regular hospital filled majorly with elderly patients. There aren't many people our age who are stuck in this predicament. Maybe the two of us can stick together. 

    My one new friend I have made had ALL, and she is a two time pediatric survivor. She has been through a lot, but our stories are still totally different. Your son and me have even more similar journeys, and I would love to be friends through it. 

    I don't know if this answers any of your questions for now, but know you're not alone. You're not the only one who was ready to go out and make a new world for yourself only to have everything crash down on you. We can pull through this together. 

  • Hello. After my AML diagnosis at the age of 23, it took a while for me to talk with fellow patients. I needed to go through the stages of grief before finally accepting everything that had happened and was still happening. Relating to someone with cancer meant I had cancer, and I wasn't ready for that. I was also afraid to bond with, and begin caring about, the people I'd encounter, because I feared losing them. But now I wish I didn't wait so long because it's a lonely road.

    Be patient with your son. Make sure he knows you're there for him, but give him some time. Best of luck to you.