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Topic: Camps, Retreats actual face to face support recommendations

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Jul 5, 2018 12:21PM

weimlover wrote:

We have a church, we have schools, we have some grandparents, there are mental health counselors at the schools but NO ONE is equipped to deal with this. They are speechless. Please help me find some other places. We can try to raise money to fly to calif or the other “big” places if I can get some help for my kids and my husband. Never mind I am not prepared, they are NOT prepared. After I am gone they will still need these connections resources whatever word you want to use.


I NEED

1) cancer support for my kids

real kids talking face to face—-//I’m looking for a canp/retreat/program where other kids (aged 6-12) whose parents have cancer (not the kids have cancer) are meeting for a few days. Not a camp or weekly meeting for those in the area (we are in no area).

2) cancer support for my husband caregiver

Not ONLINE real people with faces who could meet him who are close to his age who has little kids like ours and a wife who is dying of cancer. It changes everything.

wendy h. Dx 3/13/2016, IDC, Right, 2cm, Stage IIA, 0/1 nodes, ER-/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/25/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 6/13/2018, IDC, Right, ER-/PR-, HER2- Surgery Prophylactic ovary removal
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Jul 5, 2018 01:01PM LoriCA wrote:

Most retreats and camps that I've found are only for the cancer patient, but I found one that includes the entire family called Little Pink Houses of Hope.

https://www.littlepink.org/

It is a full week vacation (you only have to pay to travel to the destination), locations in North Carolina, South Carolina, Alabama, Maryland, Texas, Michigan, Arizona, Florida, and California, private accommodations including a kitchen stocked with breakfasts and drinks, lunch and dinner with the group, a full schedule of activities but everything is optional, and each family gets a personal liaison. I'm waiting to hear if I got in for September, my husband and I really need a break from dealing with cancer with non-stop around the clock.

I understand exactly what you're talking about - it's so much harder on the people around us because there is so little support for them. I've spent much time trying to find resources to help my husband deal with my Stage IV DX but there is little out there.

Lori

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab)
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Jul 5, 2018 01:07PM LoriCA wrote:

I see that Little Pink Houses of Hope only has one retreat still available for 2018 - the week of November 4th in New Smyrna, FL and applications close on July 13.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab)
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Jul 6, 2018 11:49AM LoriCA wrote:

weimlover here are a couple organizations that have camps specifically for children who have a parent with cancer:

Angel Foundation - https://mnangel.org/fct/campangel/

Camp Kessem (has locations all across the US) - http://campkesem.org/about-kesem


IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab)
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Jul 7, 2018 07:00PM weimlover wrote:

Lori,

Thank you so much. I applied for that last week at pink houses and contacted camp Kesem at university of Alabama. Thank you for your help. I haven’t heard back from pink houses but I’m hopeful.

Let me know if you get in, I’ll be hoping for you and your husband too!

Wendy weimlover

wendy h. Dx 3/13/2016, IDC, Right, 2cm, Stage IIA, 0/1 nodes, ER-/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/25/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 6/13/2018, IDC, Right, ER-/PR-, HER2- Surgery Prophylactic ovary removal
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Jul 7, 2018 08:51PM LoriCA wrote:

Glad it was some help Wendy. You won't hear from Little Pink Houses until 1-2 months before the date of the retreat according to their website. I applied back in March for the September retreat so I'm keeping my fingers crossed that I hear back sometime in the next few weeks. Glad there was still time for you to apply for a 2018 date, hope you get in but I'd think you will since that one was still open. It sounds like an absolutely wonderful program for families.

Lori

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab)

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