On a Dime

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Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

On a Dime

Postby Hey Daddy » Wed Nov 30, 2016 11:41 am

On a Monday evening four months ago, I drove my son to the emergency room with severe abdominal pain. Ten days later when I drove him home he had a foot-long scar, a significantly shorter colon and, at the ripe old age of 21, his very own oncologist. As all of you are aware, lives can change on a dime. Up to that time my son had been living with buddies downtown in a rental house and enjoying college life. He has now moved back in with his mother and me and is half way through a 6 month FOLFOX regimen. His cancer tumor had grown through the colon wall but was not yet in the lymph nodes so it was Stage IIB (T4N0M0). It is particularly worrisome because it has so many of the risk factors associated with poor prognosis (obstruction, lymphovascular invasion, perineural invasion and poor differentiation).

His FOLFOX experience to this point has not been terribly bad (easy for me to say) and although he curtailed his classes for the current semester, he has continued working two part time jobs and has been very active. Oh to be 21 again. He plans to resume his classes next semester and should be able to finish next fall.

Neither he nor his mother are interested in discussing risks and potential outcomes. I get that. Head down and one foot after the other. When I first mentioned prognosis in my wife’s presence she told me that she did not want to hear another word about such things. I have not made it through 30 years of marriage without the ability to follow simple commands, so I have tortured myself with google for the most part in solitude. I came across this message board and have found comfort and inspiration in the courage and perseverance evidenced here.

I realize I am rambling a bit but I would like some feedback as regards to parenting. My son is a great kid and the opportunity I’ve been given to be his father is one that I do, and always will, cherish. But he has always been a free spirit and assuming he is cancer free (which he has absolutely no doubt of) when he finishes school I know he will want to hit the road. I know just as well that his mother (a former RN) will be determined to keep him close. I’m torn. The research I’ve read leads me to believe that his cancer has about a 1 in 3 chance of recurrence. If we pressure him to stay, I’ve no doubt that he would and there is certainly no one on the planet who would look after him better than his mother, but how long do you hold back a young man who just wants to put this behind him and get on with his life?

Anyway, it may be silly to worry about things that are a year away, but that’s part of my job and it keeps me occupied. If you made it this far, thanks for “listening”. My prayers and best wishes go out to you all.

Hey Daddy
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: On a Dime

Postby Deb m » Wed Nov 30, 2016 12:39 pm

I understand where you and your wife are both coming from, but it's his decision to make being 21 years old. I don't see why he can't move on, and away when he finishes school and continue to have his follow ups which are extremely important at the same time. He is very young to have this disease. Is there a history in your family and did he have genetic testing done? Because of his age, I think getting genetic testing done is very important for him even if there is no history in the family. My husband also, age 52 was diagnosed as a stage llb with perforation of the bowl wall and was positive for invasion of the lymph vessels, but not nodes. His cancer was on his Rt. side, actually in his cecum near his appendix. He is almost six years out now and has remained NED. He had very close follow ups with ct/pet scans, and cea's for 5 years. We went every 3 months for scans and cea for the first two years, then every six months for two more years and just one time when he hit year 5. After his 5 year check, they told us that no further follow ups are necessary. My husband did have a pretty extensive history of cancer in his family so genetic testing was done and all came back negative for any abnormal shifts. We have two sons 20 and 19 years old and I still worry about them having some abnormal genetic factor that didn't show with my husband. My husband also did 12 hits/6 month of folfox.

This is a great board full of great information and I'm glad you found it. I'm glad to here that things are going well so far and do pray that he is cured from this. I just want to stress the importance of follow ups and genetic testing for him. Please be sure he follows a good surveillance plan when he completes his chemo.

Wishing and praying for the best results,

Deb

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exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
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Re: On a Dime

Postby exaussie » Wed Nov 30, 2016 12:51 pm

Hi I totally get this as my son was diagnosed at 25. We told him.from the beginning it's your choice all.tge way. We are here to support, gather information of you need, and to love you. You tell us what you need to do, we will back you. Hard at times, yes very hard, but it was worth it.
Many good wishes, don't Dr. Google and don't listen to predictions of life expectancy
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: On a Dime

Postby Maia » Wed Nov 30, 2016 1:17 pm

So sorry, Joe, for the reason that brings you here --but glad you're so willing to learn to help your son.
Deb m wrote:Because of his age, I think getting genetic testing done is very important for him even if there is no history in the family.

I agree with that. It shouldn't be a problem --they would run tests on tumour samples, or maybe some blood draw is needed. An informed doctor probably would agree about testing for Lynchsyndrome. (Don't be discouraged even if the test is positive: in the last year, two years, those with Lynch are responding better to new therapies which are not chemotherapies (immunotherapies) if needed, eventually). The fact is that actual information will give your family, your son, tools to be proactive in the followup and to feel more reassured.
Agree with exaussie too --don't Dr Google, because you'll get information that you don't know if it's pertinent for your son's case.
Wishing you the best!

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: On a Dime

Postby Hey Daddy » Wed Nov 30, 2016 2:16 pm

We had the genetic testing done and it came back negative for Lynch as well as any of the other know markers. Of course absence of evidence is not necessarily evidence of absence. My older son (23) is finishing school next week and will be getting a colonoscopy for a graduation gift. I think he was hoping for a truck but such is life.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

Nik Colon

Re: On a Dime

Postby Nik Colon » Wed Nov 30, 2016 2:30 pm

As a parent, I cannot imagine how hard it is. Hugs and best wishes to you and your family.

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SEWHAPPY
Posts: 86
Joined: Tue Nov 15, 2016 4:25 pm

Re: On a Dime

Postby SEWHAPPY » Wed Nov 30, 2016 4:19 pm

Sympathies for such a scare! Our kids are 22, 20, 16 and 14. For the two that have launched, we try and be a source of info and support but know that they will need to make their own choices. Trust that you have raised him right, remind him about follow ups, help with insurance or out of pocket costs, and pray! Whether or not there is cancer, it is basically all we can do as parents of adult children. Keep coming here for support and info, there are many caregivers, friends and family.

I will keep your family in my prayers.
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
12 rounds FOLFOX done 6/16/17.

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: On a Dime

Postby janklo » Wed Nov 30, 2016 10:34 pm

My 25 year old daughter was diagnosed the same way--trip to ER. She lived 10 hours away from us. She had been used to living on her own. You will just have to be there when your son needs you but let him make his own decisions.

One thing he may need advice on. . . .he must be sure to keep health insurance in force. With today's political climate, none of us knows what may happen with health care, but you must make sure your son is covered.

Other than that, he needs to live his life and just make sure to get his follow up tests.

Good luck!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: On a Dime

Postby Hey Daddy » Thu Dec 01, 2016 12:33 am

Thank you for your inputs. My heart goes out to all of you particularly those of you who have lost children. It is cliché but I would give anything to take my son's place as the patient as would any parent.

When my son was 18 and his friends were going off to college, he decided to travel alone from his home here in Georgia to Wyoming where he worked at a ranch/lodge and saved up money. He then set out for California and spent six weeks skateboarding down the coast solo with only what he could carry in a back pack. He has always been independent and I have every confidence in his ability to live on his own and take care of himself. It is just hard to think about him being alone under the circumstances. He would never admit to being scared but I know that it weighs heavy on him at times. Of course we will always be there for him in every way we can. Fortunately I have very good insurance so he will be covered by that until 26.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

Nik Colon

Re: On a Dime

Postby Nik Colon » Thu Dec 01, 2016 1:20 am

Hey Daddy wrote:Thank you for your inputs. My heart goes out to all of you particularly those of you who have lost children. It is cliché but I would give anything to take my son's place as the patient as would any parent.

When my son was 18 and his friends were going off to college, he decided to travel alone from his home here in Georgia to Wyoming where he worked at a ranch/lodge and saved up money. He then set out for California and spent six weeks skateboarding down the coast solo with only what he could carry in a back pack. He has always been independent and I have every confidence in his ability to live on his own and take care of himself. It is just hard to think about him being alone under the circumstances. He would never admit to being scared but I know that it weighs heavy on him at times. Of course we will always be there for him in every way we can. Fortunately I have very good insurance so he will be covered by that until 26.

Thank God for every blessing, even if it just a little at a time. Again, I am so sorry. As I mentioned I'm a parent and know the worry, but not the degree you and others here. I do know what I have seen, like my parents, with me and losing their son (my brother) only a few yrs ago also. And others I know with children. I know any parent would switch places with their child in a heartbeat. I can't even bare to think of it, let alone live it. I so hope all works out. Love and hugs.
Nik

karaj
Posts: 49
Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

Re: On a Dime

Postby karaj » Thu Dec 01, 2016 10:38 am

Hey Daddy,

I'm older than your son but I'd like to offer some young adult perspective. My mom lives in Florida and I live in Massachusetts so while she's been here a lot throughout my 2 years of treatment, she's also had to learn to live with taking care of me through the phone. While I don't need them anymore, I really appreciate her reminders about appointments I need to make and asking about different testing or trials that I should look into. It never hurts to have someone remind you to take care of yourself and so long as your son continues to go to check ups and is tuned into his body, that's all he can do and you and your wife can provide those reminders from anywhere.

I would love to be able to take off and hit the road right now but my job which supplies my great health insurance and the money to pay back my medical bills keeps me and my husband in one place. If your son wants to hit the road and can safely do so, trust him to take care of himself.

He also sounds like a prime candidate for First Descents: http://firstdescents.org/. I know many patients who have been on a trip and they can't say enough great things about it. It's an almost free adventure vacation with other young adult cancer patients!

I also recommend reading the blog/articles by Suleika Jaouad: http://well.blogs.nytimes.com/author/su ... ouad/?_r=0 and http://suleikajaouad.com/#aboutteaser. I am in awe of her as a patient, advocate, and full on life liver!

Best of luck to you and yours!

Kara
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: On a Dime

Postby Hey Daddy » Thu Dec 01, 2016 12:28 pm

Kara,

Thank you for the info and links. Anything with the word "adventure" in it is right up his alley. His most recent project that he has suckered me into helping with is the refurbishing of an old Airstream trailer that he bought on Craigslist. His plan is to fix it up as his Tiny House and live in it as he travels from place to place (job to job). I shake my head and roll my eyes at some of his "whacky" ideas but I have to admit that I'm a little jealous of his adventurous spirit. My wife and I will just have to keep in my that, as you say, we can still provide support (and nagging, err.. I mean loving reminders) from a distance. I will pass on the links which I'm sure he will find interesting.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17


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