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Old 11-23-2014, 05:48 AM   #1
Paula O
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www.littlepink.org

Hi guys,

I just got back yesterday from volunteering for a week on a Little Pink Houses of Hope Retreat. What a fun time we had together!!! This is what our week looked like:

http://www.littlepink.org/new-day-new-smyrna/
http://www.littlepink.org/winds-change/
http://www.littlepink.org/never-old-play-sandbox/
http://www.littlepink.org/shivering-...ng-time-lives/
http://www.littlepink.org/paddle-drum-ahhh-great-day/
http://www.littlepink.org/let-light-shine/

Our family was chosen to participate in a retreat a couple years ago and we loved it. LPHOH (www.littlepink.org) is a wonderful organization. Applications for 2015 retreats for those in active treatment for breast cancer opens back up in January. This is from their website:

WHAT WE DO

We provide FREE week long vacations for breast cancer patients and their families.
We believe a cancer diagnosis does not just affect the patient, but the entire family. Every beach retreat is designed to help families relax, reconnect and rejuvenate during the cancer journey.
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Old 11-23-2014, 12:00 PM   #2
evlin75
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Re: www.littlepink.org

I applied two years in a row for my daughter. They did not respond in any way. Now not even possible for her. Guess you have to be special - or know someone in the organization.

ev
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Old 11-23-2014, 02:16 PM   #3
KDR
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Location: New York, New York
Posts: 1,580
Re: www.littlepink.org

I applied and we enjoyed the Ocean City, MD retreat 2014. I think the selection process is random. No two particular people had the same diagnosis or was worse or better than any other.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 11-29-2014, 07:01 AM   #4
Paula O
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Re: www.littlepink.org

Karen, I'm so glad you were able to go. What was your favorite part of the week? Mine was the paddleboarding but I loved everything. Ev, I sincerely wish your daughter had been selected too. I imagine she and her family would have enjoyed it very much and I know you wanted that for them.

There are many, many applications that come in each year from those desiring to participate in a free retreat and there is a committee who has the very challenging job of selecting a handful of families for each retreat. I don't know their criteria but I do know there is a diverse group selected in each retreat. I am confident that being chosen to participate has nothing to do with "being special or knowing someone in the organization". Every family is special and deserving yet there are only a certain number of beach homes donated for the week along with gifts of meals from restaurants, donated activities like paddleboarding, pampering, golfing, etc, etc. Thankfully, more retreats in more states have opened up over time plus a couples retreat on an island in the Caribbean. I am amazed at what this very young, growing organization has accomplished in just a few short years. BTW, the latest issue of "Self" magazine features the founder of LPHOH among three women "making a difference". What a big heart Jeanine has! She is also Her2 positive as we are.

There is a story told around a campfire on the beach at the retreats which I think applies well to LPHOH, who is making a beautiful difference in the lives of families battling breast cancer that they are able to help, even though they obviously can not provide a retreat for everyone who applies: http://www.esc16.net/users/0020/FACE...sh%20Story.pdf

Even though it's true that there are lots and lots of people applying,IMHO it is totally worth taking the short time it takes to fill out an application. It's a trip of a lifetime full of lovely family memories.

Paula
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Old 11-29-2014, 05:18 PM   #5
KDR
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Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: www.littlepink.org

Paula O,
We loved the swimming and the free roam at the amusement park. My daughter also loved the paddleboarding. Were you at OC, MD? I don't recall seeing you or meeting anyone named Paula...
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 11-30-2014, 03:47 AM   #6
Paula O
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Posts: 954
Re: www.littlepink.org

Hi Karen,

Nope, I was not at the MD retreat. Our family participated in the Oak Island N.C. retreat a couple years ago and I have volunteered at two LPHOH FL retreats (volunteering is also super fun).

This was another highlight on the retreat last week (activities vary from retreat to retreat, depending on what has been donated at that location): http://drummagic.net/about-drum-magic. In our drum circle we drummed our hearts out and one of the songs we sang was an African chorus which basically says, "I am well with myself"...like standing up on that paddleboard or climbing to the top of a lighthouse, very empowering. I like that all the activities are TOTALLY OPTIONAL and family members can do or not do any or all of them. There are also activities for those who have little stamina.

Here's a short write up on Jeanine referencing the recent Self Magazine article: http://events.r20.constantcontact.co...u0yv5ked0e2546

To those applying,(www.littlepink.org) the more retreat locations/dates one is available for when signing up, does increase the possibility of being chosen. Sometimes unexpected spots also do open up when families who are initially chosen are not able to attend after all due to health, etc. This is the 2014 schedule--there may well be additional locations/different dates in 2015:

Retreat Schedule
2014 Retreat Locations:


April 27-May 3, Carolina Beach, NC – Application Closed

May 4-10, St. John, USVI (Couples only Retreat) – Applications Closed

May 11-17, Outer Banks, NC -Applications Closed

June 1-7, Bethany Beach, DE- Applications Closed

June 1-7, Ocean City, MD -Applications Closed

June 22-28, Key West, FL – Applications Closed

July 27- Aug 2, Emerald Isle, NC – Applications Closed

Aug 24-30, Gulf Shores AL – Applications Closed

Sept 14-20, Oak Island, NC – Applications Closed

Sept 24-30, Lake Tahoe, CA – Applications Closed

Sept 29- October 5, Buxton, NC (Couples only Retreat) – Applications Closed

October 19-25, Myrtle Beach, SC – Applications Closed

Nov 16-22, New Smyrna, FL – Applications Closed

---

Paula
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Old 12-04-2014, 04:57 AM   #7
Paula O
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Re: www.littlepink.org

Here is the link to the Self Magazine article about Jeanine and LPHOH: http://promotions.self.com/ Click on "Women Doing Good".
Paula
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