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Fighting Cancer Daily With Didi!

$27,503 of $100,000 goal

Raised by 295 people in 9 months
Created August 27, 2018
She is our Dragonfly, she brings joy and light wherever she lands, she’s been our Tribal Fusion performer and teacher for over 10 years, she is our silly sidekick, the shenanigan starter, the Skully Queen, she is our Didi and she needs our help!

For those of you who are near and dear to Didi and do not know what has been going on with her (she has tried to protect you from worry), it is with a heavy heart that we come to you now as she can no longer stay silent, to share the life challenges she is facing. Didi needs all of our help.

In May of 2017, Didi was diagnosed with Neuro Endocrine Tumors of the Lower Intestines, also simply known as NET of the lower GI.  NET of the pancreas is the Cancer that took Steve Jobs and more recently, Aretha Franklin.   Didi has been battling stage 4 cancer for over a year.  She has undergone intense chemotherapy and currently has bi-weekly immunotherapy treatments. The treatments have been keeping the Cancer at bay but this is a long-term fight.  

Didi recently suffered an additional setback that resulted in the discovery of a brain tumor in which she had a very intense 5 hour brain surgery procedure.  We feel very blessed for the success of this surgery.  Modern medicine is amazing! But it took its toll on her and has led to follow-up focused radiation treatment.  In addition to the set back of her Brain Tumor, she lost her Kaiser insurance through Obama Care.  This delayed her continued treatment. She has since found new doctors and a new facility to administer her immunotherapy in Santa Cruz.  

Didi continues to suffer from incapacitating headaches that have rendered her immobile. Her fight against Cancer has taken its toll on her ability to regularly work, keep up with the medical bills, and the cost of daily living.  Shannon, Didi’s husband has been working 6 days a week and doing what he can to keep things going but that isn't enough to cover the financial setbacks and ongoing medical costs.  They are both overwhelmingly grateful for the help they have received to date but, unfortunately, more is needed.

Fighting this Cancer is a long-term battle. But with the help of friends and community, we are confident she can beat it!  So, with some convincing, Didi has finally accepted that it is time to reach out to all of her friends, family, and community. Didi is not only an asset to all of us who know her well, but she has always been kind, generous, and an inspiration to the greater community at large, including the homeless and the mentally ill. We hope that generosity comes back to her now in her time of greatest need.   

So, we are reaching out to all of you and asking for your support.  Please do what you can.  In addition to any monetary contribution you are able to donate, your loving positive vibes are always welcomed and greatly needed.  Please share and pass on to others in your community as well.  We need you to help this amazing gift of life that is our Didi get through this every day!! We won’t give up this fight and together with all of you, we can do this!!! With love and deep gratitude, we thank you for your generosity!

Our Sincerest Gratitude and Bright Blessings

Didi’s Warriors!
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Dear Friends wow!!

Thank you so very much for your donations and your caring and loving words. Didi knows how much you all care and she is great-full and in true Didi fashion, she is receiving every one of your calls. However, the past few days have been very overwhelming for her. She wants to be responsive and take your calls and respond to your text but it is proving to be too tiresome and absolutely drains her of energy.

If you would like to get a message to her may we suggest that you post it on her Facebook page or this page. She reads them and it makes her smile. Or as previously stated, you can contact me, Linda Cox or Kathy Joy Hansen, we are both her friends on Facebook. Reach out to us and we will gladly exchange numbers. The sudden influx is both overwhelming and sad to her because she doesn’t want to be making any of you sad!! But please, we are asking you to allow Didi her space. Kathy and I promise to help her try to call on you. Didi will be around for awhile, but, her energy is limited and it needs to be preserved. We know that this is hard news for everyone but, it’s all about what is best for Didi.

Blessings
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It’s time to send an up date to all of you who have generously donated to our
Didi. Your donations have made the past few years of her fight bearable. Your donations have helped pay bills and relieve some stress.

Some of you have spent time, visiting, helping with appointments, and just distracting her. From the bottom of our hearts, Didi, Shannon, Kathy and I thank you!! For those of you who aren’t aware, Kathy has been Didi’s daily angel, allowing Shannon and I to work without worry! Fortunately, we were finally able to get her on SSDI, which has also given some relief.

Earlier this year Didi’s immunotherapy stopped working and we were informed her cancer has come back with a vengeance. Her cancerous tumors had spread throughout her body with, two very critical ones pressing on her spine, threatening paralysis! Didi opted for a new treatment, which we were informed was the final possible option for treatment of her very rare and nasty cancer. The treatment involved an extremely intense cocktail of chemo that included 48 hours of continuous infusion from a chemo pump. Her body did not react well at all. She then opted to just do one of the drugs, knowing that she was likely shortening her stay, but she was just so miserable.

As of yesterday, we were informed by her oncologist that the cancer has likely spread to her bones. Her bi-weekly test results indicate severe bone disease. This result would explain her deep down exhaustion she is experiencing along with severe leg pain. Additionally, just in the past week, Didi’s ability to walk unassisted has diminished. The tumors on her spine have likely become more invasive. Didi just does not feel good at all! She stated to her Dr. yesterday that she wants to discontinue all chemo, “for now” was her agreement. But, reality is that she is not likely to start back up.

Through the amazing tenacity and support of-our sweet Angel, Kathy, and along with her Husband and me, we are doing all that we can to allow her to stay at home. She is not at a place of needing palliative care but, the time is nearing. However, Didi is adamant that she does not want to have strangers in her home caring for her. We are doing all to honor that wish. We are currently seeking out a wheelchair for her, as the medical system will take far too long. Kathy and I are searching second hand options. But, for now, Kathy was able to find her a wonderful walker that has allowed her some independence again.

In the past few months, Didi has somewhat come to accept her fate. A few weeks ago, on one of Didi’s better days, she asked that I take her to the Santa Cruz cemetery. Didi and her Husband have decided on cremation. She wants a spot for her and, eventually, her Husband to rest together. We viewed the garden at the cemetery, we were shown a peaceful spot near a magnolia tree, that made Didi smile!

It is my desire to secure this spot for Didi while she is still her so that she knows that her final resting place is secured. I am seeking one more request for donations from all of you to assist with this and all of her in home care needs that she will soon need.

To all of you who are learning of Didi’s current state, I am truly sorry that it is through this medium that you are learning of it. Please allow Didi grace for her lack of communication and response to text over the past months and perhaps year. She is tired and very, very, sad (and I lovingly add, quite crabby these days). Speaking of her fate is just too hard and sad for her. In some ways, even though she knows her fate, speaking of it and chatting and texting the realities, is just too hard!! Please hold in your hearts the loving, bright, shining light, that we all know as our witchy, magical, dancing, dragonfly! Upon learning of this, please-don’t blow her up with text and calls. It hurts her heart so much that she is not all that she was! Kathy and I are here for all of you, please don’t hesitate reaching out to us if you need too. We will make sure we share your sentiments. But please know that, Didi loves all of you in that amazing way that only Didi can love and misses her life with all of you!!

Blessings to all of you and I thank you from the bottom of my heart for anything that you can contribute! You have All been Didi’s Angels through this journey.
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Good afternoon to all of you. I want to take this time to thank all of you for your continued generous donations you have provided Didi so far! It has most certainly helped Didi and her Husband, Shannon cover the monthly bills. I would like to also share with you how our Didi is doing. I have waited to write this post because I wanted to share with you that Didi is doing well. In fact, Didi is doing great, her energy is back, her cognitive function has improved, her hair is growing into the cutest curly top ever, and she has energy. But, as cancer goes, we have just learned that she will soon have to undergo some intense treatment that will bring her back to a weakened state again.
But before we get to that, I want to share with you the past 6 months. As you may know, for over a year now, Didi has been undergoing a very progressive immunotherapy treatment that has successfully kept her neuroendocrine tumors (NET) at bay. The recent PET scans show calcifications where there used to be tumors. The tumors in her body are not growing and they have shrunk to almost nothing. However, due to the blood-brain barrier that protects the brain, the immunotherapy does not work on the brain, so the NET cancer has found a new place to grow.
Didi has had two surgeries on her brain in the past 6 months, one that I have previously mentioned that was quite successful but required some focused radiation to make sure that the tumor was gone. And more recently, she had a second tumor removed from her brain. This tumor was sitting on her pituitary and pressing on her optic nerve. Due to the malfunction of her pituitary gland and the pressure on her optic nerve, Didi for a time had severely diminished eyesight, was displaying quite a different personality and was also quite weak in the legs. All of this was side effects from the malfunctioning pituitary and optic nerve pressure. The good and the bad news is that they removed the tumor along with the pituitary. Didi will have to take a low dose of steroid for the rest of her life to replace the loss of regularly occurring steroid function. The great news is her eyesight is back, she kills it at Jeopardy again, and now that they have regulated her steroid intake, our sweat, caring and intelligent Didi has been back to her old self. She also has new found energy and isn’t as tired. So to date, Didi has had two successful brain surgeries to remove the NET from her brain. She has also been feeling quite happy about her hair growing back.
So that is the good news that we are very happy to share, but just today we have learned that there is a new tumor growing in a broad area of her brain and focused radiation is not the option. Didi will now have to undergo two types of radiation to the brain. Starting early next week, Didi will start her radiation treatments. First, she will have a focused radiation that will be targeted between her eyes to kill any residual tumor that was not removed during the pituitary tumor surgery. This radiation does put her eyesight at risk, but it is necessary to make sure the tumor does not grow again. The second type of radiation will start immediately after the focused radiation. This radiation will be whole brain radiation. Again, not ideal, but necessary. The side effects of this radiation will be decreased short-term memory, increased steroid intake, loss of all of her hair, and loss of energy. This is not the news we wanted after such good progress in the last six months. But it is the card we have been dealt today and we are forever thankful that there are still options for treating this cancer.
It has become apparent that Didi is not likely to return to the working world, so we are working through the paperwork to hopefully obtain more permanent assistance to supplement the loss of her income. Shannon continues to be her knight and does what he can every day to work, make rent, care for her, give her encouragement, and keep her laughing! We continue to fight and have hope, and we will not give up on this fight ever!! But, just for today, we are a bit sad, a bit discouraged, and just a little angry at it all!!
I am sending loving prayers and light to everyone as you read this news. Didi is forever grateful to the love she feels from all of you. Don’t hesitate to send her a note or a text, it will certainly lift and keep her spirits up as she prepares for this next round of treatment, the loss of her hair, loss of energy, and loss of short-term memory.
Please share this with everyone. Your contributions, texts, phone calls, are all greatly appreciated and definitely needed.
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To all of you who have donated to this cause, I have been spending the afternoon going thru and reading and responding to each of your donations. The love you have all shared as you have gifted to this fund is just beautiful! So far your donations have allowed for Didi and Shannon to pay rent, get the car smogged, and buy decent food! I have placed the funds in a separate account that can be drawn from as they need it!!
Thank you all! ,
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$27,503 of $100,000 goal

Raised by 295 people in 9 months
Created August 27, 2018
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