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Joanne Madonna Morse's rare cancer fight fund!

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Joanne Madonna Morse is a phenomenal human. A wife, mother, daughter, sister, aunt, and friend. She is full of love and generosity. She has a sense of humor and one of the biggest hearts of anyone I know. She is mindful, optimistic, and is not someone who easily asks for help. This go fund me is not something we ever thought we would write for my sister-in-law Joanne, but she has just received her fourth cancer diagnosis in eight years. She and her family need our help now more than ever. Below is her story. Please consider donating. Any amount helps and comes at a time when she and her family need it most.


First Diagnosis

Eight years ago, in February 2011 I got a call from my future father-in-law. Joanne, my sister-in-law to be, was just diagnosed with a brain tumor and would need surgery. I will never forget exactly where I was when I took that call. She had Hemangiopericytoma. And although we knew this was a rare and aggressive cancer, we had no idea what the extent of it would be.

Joanne underwent surgery in March 2011 followed by six weeks of radiation in North Carolina where she lives with her husband Craig and her son Cole. Joanne’s brother Steve and I had a wedding planned where we live in Chicago that following August. After a life-changing surgery, the doctors did not seem worried, and Joanne recovered from what we hoped was a one-time setback. She was a bridesmaid, Cole, nine at the time, our ring bearer. We were grateful for her recovery and thought our biggest issue was how the stylist would fix her hair to cover the scar and where her head was shaved for the surgery.


The Madonna Morse Family at our wedding  (August 2011)

Joanne with brother Steve and sister Alisa (August 2011)

Joanne gives son Cole (age 9) a kiss (August 2011)


Except for a yearly brain scan, we allowed the incident to slip further into the past as we celebrated the present with Joanne. We watched Cole play basketball, graduate from eighth grade and go on to high school, took family trips to the beach in Cape May, NJ with Steve’s parents and both of his sisters, came together for Christmases, and eventually had two baby girls who Aunt Joanne showered with love and affection.


Aunt Alisa with Cole (age 10) in Cape May (Summer 2012)


Joanne with brother Steve and sister Alisa (Christmas 2015)


Madonna Morse Family Christmas (2015)


Second Diagnosis

For six years we believed Joanne to be cancer free. Then in August of 2017, just after Joanne visited us in Chicago, Joanne got another diagnosis that would have far greater consequences than the first. The hemangiopericytoma had metastasized to her liver.

Scattered throughout the country, Christmas is the time the Madonna-Morse family usually comes together. For the first time in 11 years (since 2006, the year after Steve and I first met) we did not spend Christmas together as Joanne’s surgery was scheduled for the day after Christmas.

Removing the entire left lobe of her liver would prove to be much more difficult and painful than her brain surgery six years prior, especially as the liver worked to regenerate itself after surgery. Recovery was long and tough. With Joanne unable to work, her husband Craig became their only source of income and health insurance. Though Craig wanted to be by Joanne’s side every moment, he could not afford to take off enough work for Joanne’s entire recovery. He chose to take time off for the surgery. Their father, Steve Sr. had also been diagnosed with cancer, multiple myeloma, and had been sick. With his parents unable to travel, Steve, Alisa and I, saved our vacation to be with Joanne in January after the surgery. Steve and I took our whole circus with – two very lively daughters that served as a much-needed distraction, and our stay was followed by time with Joanne’s sister Alisa.


Uncle Steve cooks with Cole  (January 2018)

Zada sits with her Aunt Joanne after the surgery - we had to keep reminding her not to jump on her aunt! (January 2018)


We were all so grateful for the way Joanne’s family, friends, and community stepped up to help her, her husband Craig, and their now teenage son Cole at this time of great need.

Although the recovery was hard and long, Joanne’s optimism persisted. That summer in 2017, we gathered in New Jersey to celebrate the happy news of the newest addition to our family. Alisa and her husband Brian’s newborn son, Lincoln, a rainbow baby who we had all been waiting a very long time to meet.



Joanne holds baby Lincoln for the first time. (July 2018)


Third Diagnosis

Joanne had been through a lot. More in the last several years than some people go through in a lifetime. To celebrate, Steve’s parents wanted us to spend Christmas together as a family in Key West. We were looking forward to a much-needed beach vacation that brought us all together again and to celebrate what we hoped would be a cancer-free Joanne.

The opposite happened. Several days before leaving for the trip, Joanne went to the doctor for some hip pain. Knowing her medical record, the doctor ordered a CT scan. With suitcases already packed, we got the news that her cancer had metastasized again — this time in her hip. There was danger in fracturing the hip bone, and if the hip fractured the cancer would no longer be contained, so the doctors ordered Joanne to keep the weight off her hip. We asked her what she wanted to do. Should we cancel the trip? Should we go out to North Carolina and stay with her instead? Absolutely not. She was determined to follow through with our beach Christmas. Although we were so grateful to be together, with Joanne confined to a wheelchair, we also had the ominous and visible reminder of what lay ahead for Joanne.

My daughter Zada, now five, only knew that Aunt Joanne had an owie. With restricted movement, Joanne, usually the super aunt who is kind enough to babysit so that my husband and I can get a minute to ourselves, was unable to enjoy her nieces and newborn nephew in the way she so desperately wanted to, but was at least able to delight in seeing Cole with his baby cousins.

To say it was heartbreaking would be an understatement. But Joanne is a fighter. She took no time to feel sorry for herself and had no time to wallow. She had an MRI scheduled the week we got back as well as an appointment with an oncologist who specializes in rare cancers. After seeing the results of the MRI scan, the Charlotte surgeon’s office called. Based on the results, they put her surgery on the schedule even before she had a chance to meet him first.
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Facebook Post from Joanne 1.9.19

"It has been an extremely busy week for us. On Wednesday we met with an oncology orthopedic surgeon here in Charlotte at the Levine Cancer Institute. And today we went to Duke to meet with another surgeon (same kind) and a doctor that specializes in rare cancers and sarcomas. All 3 doctors were incredible!

We have made the decision to have surgery here in Charlotte as it is closer to home and we have learned the doctor is probably the top in the state who does this and has been doing it for 25 years. So surgery is TOMORROW!

We are extremely exhausted but so grateful for the opportunities to have met these wonderful specialists.

Please keep us all in your prayersThere is still a lot of healing that needs to be done for all 3 of us.

I thank you for all the wonderful texts, messages, calls, cards, food, love, and support we have received. It takes a village in times like these, and we are grateful for ours...especially because this has been 3 times.

Love to you all! Will update sometime after surgery. ❤️❤️"
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A partial hip replacement and Joanne was on the road to recovery once again.

This time her cousin Kathy flew to North Carolina from New Jersey to help out. And Joanne managed to keep her spirits up!

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Facebook Post from Joanne 1.12.19

"So what do you do at 3:30 in the morning when you are being serenaded by the following, have no earbuds, and hate uncomfortable ear plugs and can’t sleep? Why you do a FB UPDATE of course!

Surgery went well...YAY! I was nauseous all day but that finally has subsided. I am in pain but grateful that it pales in comparison to last year.

The doctor was able to remove the cancerous section of the bone and put a new ball and rod in. Now we wait for next steps.

I’ll most likely be here for another night or two.

Thank you again for being an incredible support system.

Now to attempt to get a little thing called sleep before my next poke and prod session!"
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But, she has been a victim of identity theft: 


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Facebook Post from Joanne 1.27.19

"I’ve been the victim of Identity Theft...

But not in your typical fashion.

Today I looked in the mirror and once again didn’t recognize the woman looking back at me. She was tired...haggard looking...unsure of who she is or who she’s supposed to be.

This is the side of dealing with a major illness that can creep up on you. A side that is not talked about when preparing for your next round of excavating cancer from your body. The priority is of course to rid you of your cells that have gone rogue. And that’s a perfect starting point as you don’t want more cells to misbehave and have the tumor get bigger or even cause trouble in another area of your body.

But what about after? I’m so incredibly grateful to be alive. I’m healing physically bit by bit each day. I’m left with more physical scars that will eventually fade...but what about the mental and emotional ones of staring your mortality down once again?

That’s not as easy to heal. I’m not the same person. And some days - like today - I’m not sure who I am anymore.

When you have been on survival mode for so long - you can lose sight of yourself along the way.

So just as in real identity theft I am strapped in for a long haul...it will be messy...frustrating...probably will seem as it will go on forever.

But I know that I’m strong and eventually will prevail. It will take some time...some tears...lots of support from family, friends, and the professionals...and most of all it will take showing myself some grace and understanding.

I will regain my identity! It just may be a different - more improved - version of myself!"
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Joanne barely had the chance to regain her identity when she received her fourth and most devastating diagnosis.


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Fourth Diagnosis

FB Post from Joanne 2.23.2019

"Well it is time to rise again!!!

I have come full circle. The cancerous tumor that was in my brain 8 years ago is now back. 

Busy week ahead... brain surgeon appointment ... oncology appointment at Levine Cancer Institute ... and more.

Please keep us in your prayers. We sure need them! "

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Dealing with the tumor in her hip put Joanne a few months behind for her annual brain scan. When she went for her brain scan after her hip surgery, we learned that her cancer has come full circle and metastasized to her brain. In the 14 years, my husband and I have been together, I can count the number of times I have seen him cry. He cried when we got married when our daughters were born when my father died, and now with this horrible news about his sister.

Although Joanne has been through every emotion you can imagine, instead of dwelling on anger and the why as in “why is this happening to me?” she is focused on the what. “OK – this is my new reality, and what am I going to do about it.” I have heard her say that she is lucky, that many people have had worse to deal with. But right now, at this moment, for our family, it feels like we’ve been climbing a mountain, a mountain that continues to grow despite our tireless efforts to reach the top.

And now we need your help:

CT scans, MRI appointments, trips to surgeons and specialists have taken up Joanne's days and weeks. Cancer and survival have become her full-time job.

This new tumor is the size of a lime under her brain behind her left eye and has already messed with the bone structure of the skull, and after seeing several specialists and having her scans reviewed by a team of surgeons, it has been determined that surgery at this point is too risky. They are recommending radiation to stop the growth of the tumor. This is not a permanent solution. Radiation will not eliminate this tumor, or even shrink it. It will only keep it from growing. The numbness on the left side of Joanne's face that is caused by the tumor will remain, but with radiation, we hope to save her eyesight. 

Despite having health insurance, their family already has thousands of dollars in medical bills. Beyond the radiation she will receive for this tumor, it is inevitable that she will continue with oncology appointments, visits to specialists, follow up treatments, and regular scans to detect the cancer early if it metastisizes again. 

Surgery may be necessary in the future and with, radiation, chemo, and the uncertainty of what future treatment she’ll need, the bills continue to pile up, and this newest diagnosis will come with tens of thousands of dollars more. As we search for alternative treatments and clinical trials, Joanne will have to travel to see specialists we hope can offer new and more successful treatment options.

We are asking for your help to get her the treatment she needs. We are asking because all we can do is support her and her family by alleviating some of the financial burdens of costly doctor’s appointments and medical treatments so their family may focus on the monumental endeavor of survival.

When her son Cole asks what he can do because he feels like he is not doing enough for his mom, she tells him the best thing he can do for her is to focus on being a teenager. Keep his grades up, stick with extracurriculars, and live his best high school experience.

Let’s help Cole live his best high school experience and do all we can to ensure his mom is there for his high school graduation, his college graduation and beyond. Thank you so much for donating. We have endless appreciation for your generosity under these most difficult of circumstances.

#CancerCantKeepJoDown
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Donations 

  • Terrence Rouse
    • $100
    • 2 yrs
  • Joseph Pullano
    • $100
    • 2 yrs
  • Melanie Senediak
    • $40
    • 2 yrs
  • Anonymous
    • $120
    • 2 yrs
  • Josephine Paragano
    • $75
    • 2 yrs
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Organizer and beneficiary

Rachel Rozycki
Organizer
Huntersville, NC
Craig Morse
Beneficiary

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