The Leukemia & Lymphoma Society Community: Message List

Re: Angry at my 18yr old son with new diagnosis of ALL

communityreply@lls.org — Tue, 05 Mar 2013 14:29:12 GMT

Also, I did fail to mention that my daughter lashed out at all of us for a long time ....and we let her be angry....and we accepted where the anger was coming from. I was thrown off my your last line about him holding up his end of the bargain...I'm not sure what you meant by that --- none of us really have any idea on how to deal with this ....

I'd let the bad behavior roll off your shoulders - and by being cool, and saying back to him - something like - "I know you don't mean that, etc" ....instead of fighting with him, I beleive he'll eventually lash out less. Overtime, and with acceptance my daughters behavior improved - and when I stayed silent after one of her outbursts...she would always come back later, and apologize. Having cancer, even in remission is hard to accept - and that fact that he wants to jump into normal life - is good - you have to keep looking forward...

One last point - is your anger -- trust me - I have a TON of anger that I deal with on a regular basis because of all of this - but it takes extreme focus to not point any of it back at your child. They didn't ask for this - we didn't ask for this - we have no control over this. I found a way to control my temper by taking time for myself when I could - to breath, take a walk - go to the store alone - run on the treadmill.

The more you can release your stress and anger - preferable in a positive way - the better you can help your family...

xoxoxo

Re: Angry at my 18yr old son with new diagnosis of ALL

communityreply@lls.org — Tue, 05 Mar 2013 14:20:11 GMT

Hi - first, know that I'm not judging. My daughter was Dx with Pre-B ALL in June of 2011 - we have about 8 more months of treatment to go - she was 12 at Dx and will have just turned 15 when she goes OT in October 2013.

So- try hard not be angry with him ....he can't help not eating - they feel sick all the time -- he doesn't need to exercise ....he will when he feels better. My daughter had terrible mouth sores at some stages - they prescribed her a mouthwash with lidocane & she could sip soup - just broth for days on end. But there were other weeks where she ate completely normal. Hygene has nothing to do with mouthsores -- it's the chemo!!! He shouldn't take any blame in all of this - he's angry & he should be ....but he does need to find a way to move forward to acceptance....

This is a really long road - my daughter is on HR protocal 0232 - many of the drugs are similar. All that matters is that he takes his meds and does all necessary treatments. He will get hungry, he will eat .....or they will put in a feeding tube - but you have to think about how painful it is to eat....and find medicines to make the mouth sores better.

Looks for some support groups for him also - it must be very hard for an 18 year old boy to be "mothered" - when he's just ready to take off into the world and be a man ...so some of this push back - even extreme push back to me - is really normal ...

Again - my only thoughts ---as long as he takes his treatments and meds (and I would watch him take them every day), then acceptance, and support will come -- hope I helped a little...also, I don't think that he needs to be proactive about his care....despite his age - he needs you - and even with my daughter (she's in maintence right now) - when she sleeps at a friends house, she always texts me when she takes her pills .....I just need to know that she took them ...

Let him lead where he can .....but otherwise - gently steer the ship --and give him a path to vent via support groups -- b

My daughter's Wish was granted today!

communityreply@lls.org — Mon, 28 Jan 2013 22:43:52 GMT

Not sure if you guys remember us - I haven't been here in awhile ...

But, it's off the Atlantis in the Bahamas at the end of May!!! My daughter was Dx in June 2011 with Pre-B ALL, and will be in treatment until 10/17/2013 ...so about 9 more months!! She is SO excited!

Has anyone been there for their Wish!

Re: Bactrim during LTM for ALL

communityreply@lls.org — Mon, 28 Jan 2013 22:40:49 GMT

my daughter was taken off Bactim and moved once a month Pentamadine due to low counts with Bactrim. She's been doing great with the Pentamadine & I feel better knowing she's protected! b

Re: How long to find correct dosage in LTM?!?

communityreply@lls.org — Mon, 28 Jan 2013 22:32:44 GMT

We're 8 months into LTM and still don't have the "right" dose -- her pills change constantly. Caught a cold, counts were too high, but didn't increase ....finally increased, still high, increased again. Then too low -- dropped the doses ....we have CBC's tomorrow & I'm really hoping we're in the right window - we haven't been there once yet .....she started at 100%, and worked her way down on the meds -- currently running about 12% 6MP, and 25% Methotrexate .... good luck - b

Re: Would you want to know then, what you know now? LTM

communityreply@lls.org — Mon, 28 Jan 2013 22:29:39 GMT

Hi - I haven't visited here in a long time.

Hmmmm....well for us LTM has been pretty easy - and WAY easier than frontline. My daughter, Pre-B ALL has 9 months of LTM left until OT. But let's see, I was also sort of told that life would go back to normal once we hit LTM ....and I think I needed to hear that then to survive it all. Would I have wanted someone to tell me that we would be changed forever - and for us - like the world over time - there is BC and AC ....lol - life Before Cancer and After Cancer ...no - I don't think I would have wanted someone to tell me that we'd never be the same .....we had to grow into this - but it has been easier - physically, going back to school, hanging out with friends -- thinking about (gulp) the future ....so for me - I think the message is that it will get easier - but it will never be EASY - but I'd maybe let the forever changed part just - well, I guess that's different for everyone.....xoxox b

Re: Maintaining your Marriage through treatment

communityreply@lls.org — Thu, 27 Dec 2012 13:47:31 GMT

hi , yeah, this is a rough topic to actually write about ..hahha. During frontline, I think we did pretty well, we made a great tag team taking care of our older daughter Dx ALL in June 2011, and our younger daughter. Thankfully we live relatively close to our hospital, so we would hug and pass each other in the hospital hallways. I will say that during frontline, whenever our daughter was feeling well, we did tons of fun stuff ....stayed in hotels, went to sporting events, dinners out, etc- but that stuff probably wouldn't be very fun with a 2 year old ...so I'd try to make the best of your family time at home -- buy balloons, create celebrations for no reason - celebrate your half birthday's - buy cake & smash it up with your hands ...anything to have fun, be light, and laugh together!

Now, I will say that for me - as the main caregiver, and as the one who physically had to watch most of the pain ....I cut off my emotions to get through frontline - my daughter didn't want to see me cry - so I sucked it all in. Now that's we're at least 6 months into maintenance, and I'm being very honest here - my issue is that I'm feeling very disconnected, and I can't seem to turn my feelings back on ....so for me, staying close and connected in frontline wasn't an issue ...but now - sometimes, I don't have any feelings at all. Yeah, I know - I should go see someone ..hahahhaha, and I probably will. But back to the marriage thing...hang in there - laugh when you can - hug when you can - have sex if you can (I think it's hard to emotionally, but if you can find a way, do it!) ....We've been married for 17 years, and together for something like 23 ...and we've been through other stuff ...but there is nothing like this, and the bottom line is - it's HARD, but don't give up.

Best to you - xoxo b

Re: Using Marijuana for Leukemia Treatment?

communityreply@lls.org — Mon, 10 Dec 2012 21:19:13 GMT

I have to say, the one amazing silver lining on this board is all the wonderful, rational open minded parents! Kytrel works like a dream for my daughter - I'm so clueless I've never even heard of Marinol - but I agree with many others - with all the stuff they're putting into my little girl -- something natural would be the least of my worries if it came to that ... hope you're all doing well- Thanks, b

Re: We are OT!

communityreply@lls.org — Tue, 04 Dec 2012 21:36:01 GMT

CONGRATULATIONS!!! Thank you for your support and responses while my daughter has been in treatment - her last chemo will be 10/17/12 ...so not "too" long - but I'm so happy for you and Lauren!! xoxox Becky

Re: When does the nausea stop?

communityreply@lls.org — Thu, 29 Nov 2012 20:48:51 GMT

Zofran never helped my daughter - Kytrel was the miracle anti-nausea for her. She's several months into maintenance now, and only takes it for 48 hours around her monthly visit - otherwise she never needs it ....OH - but to mirror Doug's note - she still takes Prilosec - for stomach upset type issues -but eats like a totally normal kid ... b