Stage IV parents with young child(ren)

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Windswept
Posts: 4
Joined: Mon Apr 01, 2019 12:29 pm

Stage IV parents with young child(ren)

Postby Windswept » Fri Jun 14, 2019 9:32 am

Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.
8/16 Dx stage IV RC, lung met, @30
MSS, KRAS G12D
FOLFOX, chemorads
7/17 APR surgery
9/17 Wedge resection
11/17 More in lungs
FOLFIRI
7/18 Wedge resection
10/18 Wedge resection
3/19 More in lungs
8/19 Bone mets (spine), 5FU+Bev

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage IV parents with young child(ren)

Postby ginabeewell » Fri Jun 14, 2019 4:51 pm

Welcome and hello!

I have twins aged 7 and stepkids 13 and 16.

I went through a phase of obsessing over dying and leaving the kids - literally could not stop thinking about it. Walked into my therapist’s office and ended up telling her about this toward the end of my session. She recommended a book called Journey of Souls.

I’ll start by saying I’ve never been into that kind of new age / spiritual stuff, but reading the book helped me to do a 180 in terms of how I thought about life and death.

I’m grossly oversimplifying but one of the tenants of the book is that we lead many lives and we choose each subsequent life based on what we needed to learn or how we needed to develop. And we get visibility into the key defining aspects of a life - which would mean for example that you decided to live a life where you would deal with cancer and possibly pass away at a young age. I don’t know why but it really helped me to think that this cancer didn’t just “happen” to me but I chose it for some reason, even knowing that it might take me sooner than I thought I would go.

By that same token, it would mean my kids chose their life with me.

That premise was a game changer for me, and put my focus squarely on life versus worrying about death. I definitely would encourage you to read it if it seems at all interesting. I read all the Amazon reviews and thought, no way could it really be “life changing” like people say. But for me it really was.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Achilles Torn
Posts: 117
Joined: Fri Dec 16, 2016 2:41 pm

Re: Stage IV parents with young child(ren)

Postby Achilles Torn » Fri Jun 14, 2019 4:53 pm

Hi Windswept,

I'm sorry to hear about your diagnosis. As an incurable Stage IV patient with 3 young children I was devastated and did patient counselling at my cancer center. I was after a while able to live in the moment and I try not to think about what will happen in the future. Sometimes I do and the sadness is overwhelming, but I've learned to manage it. I've had 2 and half years with my boys that have been amazing and I try to feel lucky for the time I've had with them.

The one thing I will add is that no matter how slim, there is always hope.

AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Stage IV parents with young child(ren)

Postby Maggie Nell » Fri Jun 14, 2019 7:36 pm

Windswept wrote:Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.


One of the coping tips that I see the most across the spectrum when a parent of young children has a grim prognosis, is to write letters for
the child to receive on milestone occasions in the future. Remember in that movie "Stepmom", the mother made memory quilts for her children?

Long before my diagnosis and coming into this forum community, I had been in an online support team for a mum with a young child. She kept a blog which in recent months has been published as a book. This mum was very realistic about the stages in her child's life that she was going to be present for and what her husband and
their extended family would need her guidance on - down the track. Google "gracefulwomanwarrior".

Scrapbooking is another way of gathering memorabilia and stories that only you can tell.

It is heartbreaking that your life has been visited by this most unwelcome intruder - mother interrupted - cancer might take your body, it can never silence your voice.

Swinging chickens.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

Windswept
Posts: 4
Joined: Mon Apr 01, 2019 12:29 pm

Re: Stage IV parents with young child(ren)

Postby Windswept » Sat Jun 15, 2019 6:22 am

Thank you for your replies! Gina, I will absolutely check out that book. I am open to anything if it can help pull me back into the present.

I have been writing to my son for about a year, and I guess that does help me feel a little more in control, but I have to be in the right mindset to do it, otherwise it sends me spiraling. I like the idea of writing things for my husband/family too. I love making photobooks and have been setting aside more time for that. They bring me a lot of comfort.

I'm encouraged to read that you guys have been able to shift your thinking for the most part. Thanks for the reminder about hope, AT! I told my oncologist yesterday that I'm trying to have hope but feel like it is just denial, and he said there's nothing wrong with a little denial! I think he's right if it helps me live in the moment.

It is heartbreaking that your life has been visited by this most unwelcome intruder - mother interrupted - cancer might take your body, it can never silence your voice.


This is beautifully put. Thank you.
8/16 Dx stage IV RC, lung met, @30
MSS, KRAS G12D
FOLFOX, chemorads
7/17 APR surgery
9/17 Wedge resection
11/17 More in lungs
FOLFIRI
7/18 Wedge resection
10/18 Wedge resection
3/19 More in lungs
8/19 Bone mets (spine), 5FU+Bev

BritinCanada
Posts: 8
Joined: Tue May 28, 2019 2:28 pm

Re: Stage IV parents with young child(ren)

Postby BritinCanada » Sat Jun 15, 2019 4:11 pm

I have four small children. And the sadness really can be overwhelming at times. But I think that it's absolutely healthy to feel that way and scream and cry about it because it sucks. The thing is it's more exhausting to feel that way all the time and it's not healthy for anyone. There is joy and happiness even in times like this.

I have booked myself in for some therapy and I think I will be doing the same for my oldest kids too. I have also started writing a journal for them all, little stories about them and things they might want to ask me when they are older like their birth stories or stories about me. I think I will write them letters and cards for when they are older too. I also keep a box of their baby things up to date but I was doing that before anyway.

In some ways we are lucky we get the chance to do these things for our kids and we get to make positive memories with them, not everyone gets the chance.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: Stage IV parents with young child(ren)

Postby kandj » Sat Jun 15, 2019 9:28 pm

Our kids were 5, 7, and 10 when my husband was diagnosed stage 4 in 2015. It was such a gut punch. We found out during an ER visit and I just remember looking at the doc, then my husband who was as white as sheet, and then the doc again. I said “he is 36. We have 3 kids. This can’t be right”. I remember going out into the hallway to call his parents. I called my girlfriend after who had my kids with her. I just broke down and told her I was going to be a widow in 6 months and how was I going to raise 3 boys into men without their dad. I am so thankful I have been wrong. We are coming up on 4 years. We have had some very close calls with infections, but he is an immense fighter. And I’m so thankful my boys get to see that about their dad.

Your son is too young for it right now, but please look into Camp Kesem for him in a few years (or tell a loved one). It is an amazing camp all over the country that provides a week of free camp for kids with a parent who has or has had cancer. It has been so uplifting for our boys.

I think the most amazing thing I have seen about our kids through the last few years is their resilience. And their ability to exude empathy for others. Your son has that too. It is an absolutely shitty deal you have been dealt, but just keep giving him you in the now. If you don’t beat this, he will have those memories.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage IV parents with young child(ren)

Postby Pyro » Sun Jun 16, 2019 7:54 am

Windswept wrote:Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.


My kids are 12 and 9 now, it was a gut punch getting diagnosed 4 years ago. We immediately put them into counseling and have a local non profit that helps deal with this issue. They see me on chemo, watch the erbitux turn me into a white walker and feel my absence while I have to stay home and recover while their lives go on. The one thing that helped me was to accept what is happenening, worry doesn’t help anyone, sucks to hear and say. Thank God my wife is a strong person.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

CrossfitChick1980
Posts: 53
Joined: Wed Nov 25, 2015 9:40 pm

Re: Stage IV parents with young child(ren)

Postby CrossfitChick1980 » Wed Jun 19, 2019 3:35 pm

When my husband was going through treatment (he was on chemo for the rest of his life), we made it a point to still have fun as a family. Our girls were 9, 8, 7 and we had our youngest the year he was diagnosed. When he was tired, we sang karaoke and jammed out at the house. When he was on maintenance chemo, we took little weekend trips here and there. Our key to not worrying was to live life to the fullest.
Caregiver to DH dx with Adenocarcinoma of Small Intestine
Mar14- Small Bowel Resection (dx @31)
May14-Oct14: Folfox
Apr15- Liver mets
Jun15- Xeloda/Oxalyplatin
Oct15- Folfiri/Avastin
Dec15- Liver Mets, lymph nodes shrinking.
Apr16- Liver mets gone! lymph nodes stable
Jun16- Avastin/Xeloda (MSS, KRAS)
Jul16- Maintenance Chemo
Jun18- Cancer is back in liver
Sep18- Lonsurf
Oct18- Therasphere txment (failed)
Dec18- Folfiri/Avastin
Dec 22 2018- He is no longer suffering- My Love is sleeping in Peace

Butt
Posts: 26
Joined: Mon Mar 11, 2019 10:48 pm

Re: Stage IV parents with young child(ren)

Postby Butt » Sun Jun 23, 2019 1:02 am

I don t have kids but I always wanted to. My heart was in being a mommy. My child has never been conceived. I won t even see my kid in Heaven. Cancer took it away from me.

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Stage IV parents with young child(ren)

Postby PainInTheAss » Wed Jun 26, 2019 5:19 am

Windswept wrote:Hi, this is my first post here, but I have been reading for a while. I've been stage IV all along, but we were chasing cure. In March we moved to confirmed incurable. I have a four-year-old son and the sadness and despair about leaving him motherless is nearly all-consuming. I haven't been able to connect with any local young adult support groups. Does anyone here have any coping tips? I'm trying to stay hopeful, clinical trials and more chemo are on the table, but I'm finding it really difficult.


My mother died when I was thirteen and when I was diagnosed I was devastated thinking my four kids might lose their mother as well. You never wish any pain on your children. Two years later my ex husband was diagnosed with stage IV medullary thyroid cancer. He died in September 2017. So, I watched my kids go through the experience of grief and this has made me so less afraid of dying. They will be fine not matter what happens. We are all equipped with the ability to grieve death. Why? Because people we love die. It’s a part of life. It’s expected. In our culture, we are largely shielded from it so grief seems to be rare. But humans throughout history have had to cope with the loss of parents, children, siblings, and extended family members because of all kinds of diseases and tragedies. We are born into this world equipped with all we need to handle all of these possible tragedies. One man during the 2004 Tsunami lost all of his family members and relatives. Every. Single. One. In one day. These types of losses were not rare or unusual in our distant history. Grief is the process of severing the emotional bond and accepting that it is broken. It hurts. But then it heals. The end stage of grief is when you feel joy at thinking of and remembering your loved one. It does stop hurting eventually. I can attest to that myself. But you never stop loving the person you lost or stop remembering them. I still think about my little brother who died when I was 7 and wonder what he would be doing now. Now all of my grandparents have passed away, both parents, and my ex husband. Death is a part of life. My friend’s mothers were dying and I actually felt a little relieved I wouldn’t have to go through that myself. I know you feel responsible for his well being, but he will be taken care of. And he will always know you loved him.

A word about the letters... one recipient of these said that getting one at every milestone or big event cast a shadow over them, like getting a birthday card from the deceased parent at a birthday party in front of all of the other kids. Just be mindful of the timing of the letters and the circumstances he will receive them, maybe give it to him the day after a big event in private so he has time to process it. Grieving is a process, and a child has to grieve every loss they miss with a parent, not just at the funeral, so these letters, though well intended, may end up being reminders of what he lost and remind him that you aren’t there and make him sad at a time he should be celebrating. But it gets better over time.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Claudine
Posts: 187
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stage IV parents with young child(ren)

Postby Claudine » Thu Jun 27, 2019 11:55 am

Very powerful post, PainInTheAss. Thank you...
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)


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