my diagnosis of advanced cancer: how to help my kids

Parent Cafe
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<p>I am already a member of the CC community, but I have created a separate account for this thread for an understandable reason.</p>

<p>I have just been diagnosed with advanced stage cancer. Last ten days was a lot of fun - transformation from a picture of perfect health to a pretty scary place. I will go in for a major surgery tomorrow (Monday). Though the published stats are pretty grim for this cancer discovered at this stage, I have a reason to be very optimistic about my prognosis, not because of ignorance, denial and delusion, but based on some rational interpretation of the statistics that went into to the published odds of survival and what not.</p>

<p>The first thought that occurred to me when I learned this is how to help my kids. </p>

<p>I have two kids: a college sophomore and a HS senior, who just got an ED acceptance from his #1 choice school and a full ride merit scholarship (yay!!!)</p>

<p>I have already visited the GC of the second kid and let her know what’s going on. The S2 needs to maintain good GPA for the rest of the senior year (as part of the condition for the full ride merit scholarship he got). I figured his GC should on top of his case, and intervene if necessary at a first sign, given what’s going on. </p>

<p>As much as it is highly suboptimal that S2’s final HS year, that should be otherwise carefree and happy, will involve watching his mother go through a whole lot of medical issues, at least he will be around with familiar faces and support network.</p>

<p>For the S1, this may be tougher: he will be far away at a school that he needs to fly from/to home. I am planning to do some research as soon as I can to see what resources are available at his school for counseling or support groups etc. For that, I am planning to enter a separate post on the forum of that college. It’s good thing that he is a “talking type”. that will help.</p>

<p>I cannot be the only one who is in this situation. I would like to get some advice from other parents regarding what to look for in terms of the effect of all this on my kids. Obviously, I have never dealt with a situation like this. I would welcome any advice, observation, and insight on the reaction from the teenagers. I know all kids are different, but still, some collective advice will be helpful.</p>

<p>P.S. If I don’t come back to immediately respond to your replies, don’t think I am a ■■■■■ (I have seen posters who say "the OP started this thread, and never came back. this is a ■■■■■). You can all imagine I may be out of touch for a while. But, I will gratefully read every post you enter as soon as I can - it just may take for a while.</p>

<p>Thanks.</p>

<p>(Ha! There are some silver linings here also :slight_smile: . Things are going so well for my two kids, I have always been very careful not to brag too much. Now, I think I have a free pass. People will feel so sheepishly fortunate compared with me, they will think "oh, the poor thing. She needs to talk about SOME good things in her life!) See, I am an optimist, trying to see the upside of all this…</p>

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<p>I’m terribly sorry to hear this. I have no advice, other than to be kind to yourself. It sounds like you are already thinking well and clearly about how to help your kids.</p>

<p>All the best to you.</p>

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<p>So sorry to hear your news and you are doing the best thing by being positive and looking into help for your kids. Perhaps the GC of the second one could contact the school regarding the merit scholarship to explain the situation and get some reaffirmation as to his scholarship standing in spite of the unknowns.</p>

<p>Best wishes as you go through this and be sure to get some group support for yourself.</p>

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<p>sunriseeast, I can’t offer advice for teenagers, as when I was diagnosed with cancer in '02 my children were elementary age. We did tell them I had cancer before I underwent surgery b/c they would clearly note my absence and my illness upon return home, and we knew up front that it would be a long 2 yr treatment process (and their pediatrician strongly recommended we be honest and use the “C” word). To this day, they speak of the experience and recognize that they’re resilient in part because of it and because they witnessed my husband and I dealing w/ it with as much grace and optimism as we could muster. Kids really do take their cues from their parents and family.</p>

<p>Most hospitals have social workers who deal with these issues. Perhaps you can contact one for advice. My hospital also had psychiatrists who exclusively deal w/ cancer patients and I met w/ one for this sort of discussion. That hour was invaluable for me both as patient facing my illness and as a mom facing her two young boys. I did as I was advised: I told each boy individually and truthfully answered any questions they had, including whether I was dying. My oldest actually asked me for my percentage chance of survival. (Figures, he’s the one who wants to be a scientist/doctor!) </p>

<p>These are tough discussions but I think the kids recognized and appreciated my honesty. And then we all moved on to living one day at a time – they continued w/ school and homework, I continued w/ treatment and my daily life, albeit w/ a much different sensibility and outlook. Eight years later, and I’m still living a day at a time, and only want the days to speed up when I’m in the midst of waiting for early decisions for my S1 ;)</p>

<p>You’ll get through this. It’s scary but you will get through this. Please feel free to PM me if you need to talk.</p>

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<p>Just posting to let you know my thoughts and prayers are with you and with your family-- for your health and well-being after successful treatment and for all of you getting the support needed as you go through treatments. </p>

<p>The only other suggestion in addition to the ones you have already so wisely thought of are considering any family-support forums through the Cancer Society or support groups through your hospital-- or even a private counselor familiar with issues of life-threatening illness. Not all counselors or therapists are as conversant with these. Sometimes therapists specializing in grief counseling also specialize in issues of health crisis or chronic health issues since there are elements of loss related to coming to terms with the fact that one’s loved one is undergoing changes, the uncertainty with a difficult diagnosis, etc. This is also true for oneself, flipping from the idea of self as a person in perfect health to one who will need to undergo multiple medical procedures and treatments. I have a good friend with a chronic illness who has seen a number of therapists over the years, and the ones who have been the best also have a specialty in griefwork. </p>

<p>My father went through a major medical crisis during finals of my first semester in college. He crashed due to previously undiagnosed cardiomyopathy (heart failure) and nearly died. We were fortunate to have 15 further years with him, though during that time there were multiple medical crises during which we almost lost him. It would have been helpful for me to have someone to talk to, not so much during finals week, but perhaps afterward, both from an informational standpoint to understand the diagnosis, but also to come to terms with balancing responsibility to self and future with responsibility to family of origin. Those are issues of young adulthood, after all, but they are heightened a bit when a parent is ill. Even if parents do not want kids to feel any responsibility toward them, still, if one has raised good young adults, they will. </p>

<p>(And, it is healthy-- as well as sometimes necessary-- for kids and young adults to be allowed to help.)</p>

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<p>First of all, my sincere wishes that you beat the odds - if only very small percentage beat this, there is no reason why you can’t be part of that group!</p>

<p>As for your kids, one of my very closest friends had a re-occurrence of breast cancer when her girls were a similar age to yours. One was a junior at NYU, the other a senior in high school.</p>

<p>The first thing she learned was that the girls were different and so they reacted differently. My friend was always honest with them, she didn’t try to pretty up doctors’ reports, and kept them posted on upcoming appointments and tests. She believed that it was important to establish that they could trust her. If she said she was doing fine, they would believe her. </p>

<p>take care and please let us know how you are doing.</p>

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<p>What a shock for you to go from healthy to not healthy in a few days. I understand your reticence to reveal your usual screen name but perhaps we could offer more personalized support with that information or your diagnosis. Someone here probably has first hand knowledge of your illness that might be of help.</p>

<p>Regardless please take comfort in our support and know that you are strong enough to handle this. Sounds like you have some good ideas for helping the kids. Amazing how moms are…dealing with their issues but first thinking of the kids.</p>

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<p>I am sorry about the turn in you health. this is such a tough time, being blindsided .
I got diagnosed with breast cancer in my other breast (third diagnosis) in May 09, during my daughter’s high school graduation. I pretty much handled it like workinprogress 2 outlined. My two daughters each handled it differently. D2 worried about me as she was away at school, sought counseling, and once when I was admitted to the hospital, I called her to tell her. Just so she could hear my voice and know I was ok. D2 keeps things to herself, I plugged her into a therapist, who happens to be the counselor at her school. She never wanted to talk about it. Both did well. focusing on their work probably helped. I am saying a prayer for you. Pm me also if you need to. , when I got rediagnosed some people here really helped me. Once again I am so sorry. Remember statistics are for treatment protocols and not to determine how you will do as an individual. Praying for you to fall on the good side!!! P.S, wishing you the best on your surgery.</p>

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<p>Is there a Dad in the picture? I don’t believe I saw a reference in the original post. If so, and if the relationships with the kids are positive, he can help a lot here.</p>

<p>Do you have a support network? I think your kids will be comforted to know that someone is helping mom when she is scared or sad, that they don’t have to be perpetually strong for your sake and always take care of you–regardless of what you say. </p>

<p>I don’t have experience with cancer, but with being a teenager when a parent was struggling with a dfferent scary medical situation.</p>

<p>Wishing you and yours the very best.</p>

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<p>I am so sorry you are facing this battle. You have come to the right place, though; there are a number “members of the club” here.</p>

<p>The statistic here that matters is YOU. Remember that statistics reflect <em>prior</em> patients and by necessity involve historical data. Treatment protocols and drugs change so rapidly that current treatment modalities may produce significantly better results than even five years ago, depending on the cancer.</p>

<p>Absolutely let your HS S’s GC know (and let the GC touch base with the college). Your older S would need to grant a FERPA waiver, but it would be good for you to speak to his advisor as well. Even if the advisor/GC never needs to get involved, it’s good that they are aware of the situation.</p>

<p>If at all possible, I recommend getting yourself into therapy. I knew that someone in our family needed to be able to handle the emotions and questions flying around, both the ones asked and the ones unasked, and I knew my husband was not up to that task. Cancer changes relationships, sometimes for the better, and sometimes it exposes the cracks because the spackling we’ve done over the years can’t hold up to the stress. Therapy is a place to discuss this. </p>

<p>Educate yourself if you are the sort who finds it comforting. Some oncs tell patients not to get online; I have found it a great resource. There are listserves for many different types of cancers; I am on a couple of them for my illness. I am a researcher by nature – having knowledge makes me feel in control. I learned pretty quickly to cull the wheat from the chaff. The good listserves have folks who post the latest research, can give referrals for doctors, etc. These people will also understand what you are experiencing. Pubmed, run through NIH, is a good resource for articles. (My sons’ Bar Mitzvah tutor was one of the creators of this resource.)</p>

<p>If you have drug allergies/reactions or other underlying health conditions, you may find it helpful to carry a list of them (or have your caregiver do so). I am constantly having to remind people that I have X condition and take Y med, and have bad reactions to X class of painkillers. </p>

<p>Don’t be afraid to ask for help. Get someone in to clean (you will likely be immunosuppressed at some point from the chemo). If someone from your faith community wants to coordinate dinners, ask them to set up a schedule so you aren’t overrun with 20 casseroles all at once. You need your energy for being present with your family and doctors, and on the critical task of healing. </p>

<p>If you need help from your kids, ask. If you feel like crap, tell them. Let them know when you have appointments and what the test results show. If you are honest with them, then it’s more likely they will be honest with you about how they are doing, and they can be reassured that you say you’re doing OK, it means just that.</p>

<p>Think about what you want from your life. What are your goals? What things are non-negotiable? I made a bucket list (long before the movie came out) and I still carry it in my Day-Timer. </p>

<p>My kids were 10 & 11 (4th and 6th grade) when I was diagnosed. We told them everything once we had the test results back, including using the word cancer. To this day, my kids can talk about cancer, leukemia and all the terminology, but my DH has never been able to utter the C-word. My younger one asked <em>all</em> the questions. S1 didn’t want to talk about it, but was always on the periphery, listening. Same dynamic continues today. I’m now 8.5 years into leukemia. Have never gotten a full remission, but it’s mostly under control. Feel free to PM me, and know we are here for you. There is a reason I’ve been in this community for so long!</p>

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<p>Several of the listserves I’m on are affiliated with this group, which also has other resrouces as well: [ACOR</a> Home Page](<a href=“http://www.acor.org/]ACOR”>http://www.acor.org/)</p>

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<p>I have not wisdom to add here… just prayers for you and your dear family.</p>

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<p>wow, already many responses. I am busy this evening getting everything ready for my “spa check-in” tomorrow morning, including doing 5 loads of laundry.</p>

<p>Thanks for your kind replies. </p>

<p>Yes, H is in the picture. He is an amazing father and even more amazing husband. So, I am very fortunate.</p>

<p>No. we don’t have financial issues. Sigh of relief.</p>

<p>Yes, we already had a family discussion face to face. This is the first time I appreciated my S1’s school’s off beat academic schedule (quarter system) that allowed him to be home much earlier than the normal schools. </p>

<p>I told them like it is. No sugar coating. That’s our style. I also told them that in spite of grim statistics, I have terrific odds, and I explained the rational ground of my optimism. </p>

<p>I have a lot to prepare this evening to get ready for my “spa check in” tomorrow morning, including several loads of laundry I would like to finish and getting all the paperwork in order for finalizing my S2’s ED acceptance and scholarship.</p>

<p>Even with all this, I am very grateful for all that is going for me - including an incredible HR policy of my husband’s company that lets him take personal sick days off here and there as needed to take care of (in addition to the generous vacation package and the garden variety of dependent care package if it ever comes to that, hope not). </p>

<p>I will be gone for a while, but I will read all of your kind posts.</p>

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<p>My thoughts and prayers are with you and your family.</p>

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<p>Will hold you and your loved ones in my thoughts. Please check in when you feel like it. </p>

<p>We are each one phone call from your new reality, which tells us all something about reality as we experience it.</p>

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<p>Nothing to add, just that my thoughts and prayers are with you and your family.</p>

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<p>I am so sorry you have to go through this. I went through treatment over eight years ago for stage 2. I always liked to hear the happy stories. So, here are two for you. My surgical nurse, 12 years earlier, had stage 4. She came through the storm and was such a comfort and inspiration to me. Also, my neighbor was diagnosed a little before me with stage 4 and she is still standing nine years later. </p>

<p>My children were 11 and 9 at the time. My daughter actually wrote about it in one of her essays. It made us all stronger. My husband doesn’t say cancer either!</p>

<p>My prayers are with you and your family.</p>

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<p>I wish you the best.</p>

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<p>Hugs to you, Sunriseeast. </p>

<p>Countingdown gave you excellent advice. I would add that you might want to get a notebook and carry it with you to each doctor’s appointment, hospitalization, radiation/chemo session, etc. Document every test, every drug, every procedure as thoroughly as possible as well as write down all the information you will get from various health care professionals. If you can’t do it, get your husband to take on the responsibility. A lot will be coming at you at once.</p>

<p>A friend whose husband battled hepatitis for a decade and ultimately had a liver transplant told me she did this. She was meticulous and organized about it. She said saved her husband from many needless tests (doctors tend to want to repeat them rather than get them other providers) and drug interactions. Unfortunately, in this country, our electronic medical records aren’t up to snuff - even within the same health care systems. Good luck and God bless.</p>

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<p>Adding my voice to those who will lift you and your family in prayer. </p>

<p>My only advice, based on watching someone close to me go through this with her kids: please continue to be up front with your kids. If you need them, let them know. Let them help you. It sounds like you have a wonderful and strong family…let them be there for you!</p>

<p>We are all here for you!</p>