Mothers with school aged children
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Thanks Kjones
a 504 is a great idea. We did use that in middle school and maybe the answer here. thanks
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Many here have donated . Thank you !........Wandering around and cheerleading again
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3-16- your son sounds alot like my cousin. 504's worked the best. @ 33 he just had a full psychological evaluation (ugly divorce ex was trying to have him committed). Turns out he's got an IQ of 149 and OCD. Now he's doing some bio feed back and is doing amazingly well.
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yeah my guy is unique wise and sensitive. His middle school counselor said."he s the most morally evolved individual in the whole building". He always had empathy for the bullies. 504 is likely the best place to start.
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Happy Halloween, ladies! If I can manage to keep my little guy in his monkey costume long enough to take pictures later, I will post costume pics.
Please post your Halloween pics!!!!
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Happy Halloween Mamas! Life is busy, I will try to check in later.
JFL-He is so sweet!
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jfl--so cute! My girl went to school yesterday as rapunzel. Went to a b-day party today as Elsa (her costume from last year), and tonight as a bride. My dh bought face paint because he wanted to make her look scary, but I didn't have enough time to make it look better...my son went as a football player. My aunt, uncle, cousins and their kids, plus my parents came over for supper and trick or treating. We live in a great old neighborhood. It was fun!!!
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Beautiful pictures. My son is 14 and hanging with 2 friends he has shared halloween with since he was 8. My favorite trick or treater tonight was a 4 year old superman that I had to tell we ran out of candy. He smiled and took my hand and said "thats ok, I just need to tell you not to be afraid of the zombies".
Happy Halloween everyone
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3-16 that's hilarious! Love it! Loved seeing such happy, carefree kids!
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hey everybody,
kjones, your photos are sweet, you are such a pacesetter with coaching!! I really appreciate the kind words about my son the senior. He made A's and B's his first quarter. He's finally buckling down and I hope he can get accepted to UNCG.
I feel for all you mamas as you fight for the education your children deserve. We are our children's best and sometimes only advocate. As I look back over my son's school years, I wish I had spent more time talking to teachers. I simply expected them to do their jobs and they weren't always on the ball. So I see you mamas with cancer working hard for your children and I so admire you. I also treasure the semester I homeschooled my son in NYC and I highly recommend the experience.
kjones Are you on Ritalin? Can any mommies help me decide if it will help my fatigue. I took ADD meds when I worked and they helped a lot. I had huge issues focusing after I had a son (I've read that some researching are blaming this on childbirth anesthesia, not childbirth, but that's another topic.) I saw my doc at Sloan-Kettering yesterday (STABLE SCANS -- PRAISE GOD!) and complained about my fatigue. I have about 3-4 hours a day where I'm useful, no joke. Doc suspects it's a side effect of pain medicine. I'm so happy to be alive but I want to be alert too. Some ADD meds made me feel "wrung out" at the end of the day.
My husband and I have been married 4 years (was diagnosed with Stage IV a month after our wedding). We never had a honeymoon or even a vacation longer than 5 days. We are going to Barbados for a week and I am ready for a holiday!
Wishing painfree days for all of you moms. I know everyone is busy -- if you can't write at least post pics of your kids. I truly love to see them.
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Cristina--precious!
I need to go back and read and comment on the others. My baby is sick with fever and cough. So weird to see her happy bouncy self down.
Tarheel--first, yay for stable scans!!!!!!! I had mine Monday and I'm stable too!!! Maybe we can spread that stable stuff around to all
I am not on ritilan. I am very frustrated. I keep telling my onc about the fatigue and how it really is majorly affecting my QOL but he told me--whatever side effects I have from my treatment those are the only side effects I will have. I will not have new se's AND whatever se's I do have from treatment should NOT worsen over time. I call bullshit! There are too many of us out there who struggle big time with increasing fatigue. But I am also on pain meds and anxiety and depression meds...he thinks that is more of the issue. I have an appt in two weeks. I will be demanding ritilan or adderal! Keep on keepin on momma's! Advocate for yourself! You and your kiddos deserve it! Much love,
Kristin
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Ronda, you must be close to me! I'm a FT student at UNCG working on my Bachelor's Degree. One more thing to mark off my bucket list.
Kristin, my husband was born in Hendersonville and grew up in Etowah. Are you familiar with that area?
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oh yeah! I went to mills river elementary, rugby, and then transferred to north Henderson. Cool! Wonder if we know each other. I'm sure we know mutual people at the least ;
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I'm new here and newly diagnosed. But I'm in awe of how you women are taking charge and living your lives as if they are just as they always were (I mean that it a very positive way). I am struggling with dealing with it all as a single mom to two very high energy kids. The diagnoses and treatments are all still very new and I'm hoping I can get to feeling like I can do this and still live a good life for my kids. It's scary as hell.
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hang in there Kristin. I had to hire a nanny to help get through treatments. It was actually a family of high school and college age kids who had thevenergyvti play with my kids. Friends made meals. Some family visited and helped. Pool your resources. Take. Care of yourself. We are here for yo
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Welcome to the best club that no one wants to be part of, Kristen! You are in the right spot and we will support you any way we can! It is scary, but you are not alone!!!
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Love the pics of all the adorable kids!!!
Tar Heel and KJones, regarding fatigue, although I am doing fine on my current combo of Aromasin/Faslodex/Ibrance, I had a very tough time with debilitating fatigue on Tamoxifen for several years and had success with Provigil and Nuvigil (newer generation drug by same company). They are expensive but Provigil went generic (modafinil) and seemed to work a bit better than Nuvigil. They improve "wakefulness" without the stimulant side effects or addiction potential of Ritalin, Adderal and similar drugs. It was approved for night workers with work-shift sleep disorder and is prescribed off label for BC treatment-related fatigue. I also had success with Wellbutrin, which is an atypical anti-depressant known to improve energy due to its effect on dopamine and norepinephrine. (I had to go off it because it uses the same enzyme as tamoxifen for metabolization but I don't believe it is contraindicated with other BC treatments.) To a lesser extent, Effexor may help due to its partial norepinephrine effect or high dose SAM-e over the counter. Effexor is VERY difficult to go off of, though, due to withdrawal side effects. I have used all these drugs and had the most success with Wellbutrin and Provigil. I saw immediate improvement the first day on both medications.
My current oncologist is supportive with treating side effects but my last one was very difficult like yours, KJones. I think I had t get the medications through the psychiatrist at the cancer center or through the recommendation from the psychologist to my onc. My onc would balk at all of it and tell me I am just depressed, but would usually begrudgingly fill the prescription upon major pushing. Good luck! None of us should be suffering if there are treatments out there.
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Jfl---thank you, thank you, thank you for the suggestions!!
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JFL, thanks for suggestions. I was on Wellbutrin for a long time but dropped it when I went on Tamox. I'm going to try a stimulant -- I've used them in the past. I can't stand to be on so many pills.
cafelovr, we are close. I'm a UNCG alum, living in WS.
kjones, thanks for your support andhope everyone is healthier at your house.
welcome Kristin. Moms make the best Stage IVs because we have survived so much hell and heartache!
I love all these photos. thank you for posting. I really enjoy looking at them.
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Hi everyone. I am really struggling with worry over the younger two of my kids. My son is 24 and had been a great support to me. It's so. Good to read about how others are getting on with life so well. At the moment I just feel so sad x
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BarbDenise, you're not the only mom who is sad now. What is on your mind? We are here.
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Hi,
I had progression ofthe worst kind - leptomeningeal disease. They hesitated when they first saw it, made me wait a month and confirmed it. My symptoms were facial pain and were also atypical. I had worsening symptoms (constant head painon addected side, stiff neck) and went to the ER. The next day I had an ommaya reservoir placed, a catheter into my skull. I started that day, Dec 4, on systemic Kadcyla and intrathecal (IT) Herceptin; im the 18th patient in the world on this particular protocol. i also switched to a ketogenic diet which is supposed to be especially effective against brain tumors.
Even when dosed badly, in patients who had this as late disease progression, IT Herceptin treatment significantly extended lives. Untreated I would be dead in 3-6 months but there are many stories emerging of patients living 4 years or longer.
So of course I cant tell the kids except for the cancer came back and they are giving me more medicine to get rid if it. I am actually really healthy except for this single patch of cancer on my right cerebellum, even my blood labs are good. I heard that your kids only care how you are doing today. I dont feel sick, i dont look sick, snd other than having poor sleep I look healthy.
I am doing Christmas as we useually do, with lots of baking and decorating -- but not sweets for me. The kids seem happy, though they didn't like when I was in the hospital and they "think" my diet is weird even though I'm trying hard to make it be normal. It makes me want to cry when I think of how hard their mom is working to save her life to be there for these two lovely boys. Hopefully I get to stay around for a LONG time and they dont have to know what their mom did for them.
Fingers crossed for my next brain scan on 12/28.
Ann
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Best wishes Ann. December has been a hard month for me with kids as well as several of them have been diagnosis and rediagnosis months. It was hard to battle being happy for the kids with what you do to fight. You are doing an amazing job. I will envision us both being here for many more holiday seasons for our kids. Hugs
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Sending warm wished and hugs to all you mamas! I just typed out a post and tried to go back a page to make sure I didn't miss anyone and the darn thing got deleted!
So I just wanted to tell you all I know this is a sucky thing to have cancer around the holidays. I try so hard to live in the moment and just immerse myself in the "warm fuzzy" holidays, even if I don't feel that way. I am just doing all I can to keep my mood up. Friday I walked around Walmart humming Christmas carols because I was so cranky and I was not in the Christmas spirit at all! And it helped a bit!
I wish I could respond to all of you but my computer time is up. Wishing you all a great day
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Hi everyone,
This is my first post since I was diagnosed with Stage IV mets to the sacrum on 12/22 (Merry Christmas!). I am doing OK, still recovering from the shock as this year was my 5-year survival celebration.
My kids are 7 and 9 and I hesitate to share my news with many people because I don't want my kids to find out. I have read that Stage IV survivors can live for many years so why inform them at this point? And if I share my news with friends, they will talk and my kids will clue in. Would love some advice on how you handled it with your kids.
Thanks!
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Cita:My kids are 8 and 11 and I was diagnosed stage IV out of the gate in August. I have been very public with my diagnosis (I posted that decision process on the bone mets thread last night.) My husband and I told our kids once we knew my treatment plan. We started pretty high level, but I answer all of their questions. Some have been much harder than others. My brother in law died at 39 18 months after a non-Hodgkin's lymphoma diagnosis. That was five years ago. It was important to me to be able to tell my children all of the different possible outcomes of my diagnosis, especially now while I am feeling so well and responding so well to treatment. I needed to have the lines of communication open constantly. For us, walking the fine line between maintaining honesty and creating worry is a daily decision. I think it is different for every family and you have to trust your instincts on what is best for you and your own children. I often ask my children what level of detail they need in order to feel confident in what is happening. For the most part, we have resumed a very normal daily life. Once my spinal fractures healed and I adjusted to chemo, my children have been very unaffected by my treatment.
This is certainly the hardest aspect of all of this. Since I was only diagnosed five months ago, I am definitelystill navigating this myself. But I would be more than happy to touch base by phone if that would be at all helpful to you.
I send nothing but good thoughts your way as you figure out what makes best sense for you. Here is a photo taken about two weeks after my first chemo. Proof that kids (and moms!) are incredibly resilient.
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everyone is different. I have always been honest with my children and with those around me. I needed school support as well as friend support. I have 4 kids who were 2, 4, 7, and 10 when I was diagnosed stage 4. They had already been through my original diagnosis 2 years earlier. As my mets were in my brain and liver I had to explain some thing to them. I had to have radiation to my brain which I believe needed to be explained. I stressed that the cancer as back but it was treatable again. I did it get into statistics unless they asked. I answer questions as they come up. As my kids get older they ask different questionsas they understand things more.
I say do what works for you. That's what is important. You know your kids best and what's best for them.
It's true- you can live a good life with stage 4 disease. Best wishes
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I was diagnosed August 2013 with metastatic disease right from the get go . I chose not to tell my children at first. I told my oldest child who was 15 at the time of my diagnosis and about to turn 18 after the first year. I told my second child who is now 11 after the second year of my diagnosis. It was the right time for me and for them. I think you know your kids well enough that you know what they'll need, and you need to do what is most comfortable for you. The right moment and the right place to tell them may come at the most unlikely time. I ended up telling my oldest in the car, when we were alone. Go figure.
Good luck, and many hugs,
Michelle
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Thanks so much everyone. I can tell this forum will be important to me because as BlueFrog76 said, our children are the most difficult aspect of our diagnosis!
I will watch for the right time and circumstance to share with my kids. Right now, I need to work out how to share the news with my parents and my best friend. Luckily, my husband and sis have taken it well.
Best wishes to all and be back soon.
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