Support Team Scattergood
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This page is to support Joanna Scattergood and her rare, aggressive Tumor Fighting Team comprised of her little sisters(me and Jane), her little brother(Mark), her Mum and all of her specialist team at the University of Washington.
My beautiful, caring, talented older sister, Joanna, has been sick for as long as I can remember. Just after she graduated from BYU she started feeling the symptoms.
She has suffered fatigue, insomnia and overall pain for over 20 years. She has been to several doctors over this time and they diagnosed her with all sorts of conditions; Fibromyalgia, depression, allergies, obesity. They told her that if she could just get out and exercise she would be fine!
In 2008 Joanna had to have an emergency hysterectomy, but this was not the usual surgery as she has multiple tumors in her uterus(one was the size of a babies head), ovaries and even infiltrating her bowels. She was very sick for over a year following this surgery as she was treated very poorly by the hospital and doctors staff and ended up with multiple infections from lack of care.
Joanna tried to do what she was told, she tried to exercise but continued to suffer with such fatigue that she could only stay out of bed for a couple of hours a day. This made it very difficult for her to work on her business and love, the beautiful wedding dresses and jewelry she created; but she did what she could when she could.
About a year ago she started complaining of a splitting headache that would not go away not matter what she tried. She got considerably sicker by the day.
During all of this her husband(now EX) lost his Chiropractic License, and their income and medical insurance; they were sued personally because the malpractice insurance did not cover the incident, and then, after she had stood by his side through the horrible situation, he told her that he didn't want to be married to her anymore. They got divorced a year ago and she was left to fix their home up so that it could be sold. Everything that could go wrong with the house did go wrong! The entire sewage system had to be dug up and replaced, the wooden stair case on the back of the house needed to be completely replaced, the kitchen cabinets all had to be refaced and put up, etc. Thank goodness that a stranger named Cliff showed up on her doorstep one day asking if he could help. He got the house in selling order because Joanna could barely get out of bed. All of these costs had to be put on Joanna's credit card, as she had no income. When the house sold, Joanna had to pay off all of the debts with her portion.
Having no where else to go she moved in with our Mum in a podunk little town called Chewelah.
She had NO emotions about anything that she had gone through. She was still very ill and her headache had not subsided but was getting worse. She then started falling, one minute she would be there walking beside us and the next her legs started looking like jello and down she would go. She banged her head countless times whilst falling and she would just laugh. She was completely blind in one eye, so she could not drive. Time had started to go in reverse for her, she could not recognise how 1:15 did not follow 1:30.
Finally she had come to stay with me for a little while, she had lost the ability to brush her own hair, put on her socks and shoes, have a shower, get food, and she behaved like a 3 year old. I had to help her shower, dress and get food. We thought this was all depression. Then she fell twice in one day and then the next day she fell as I tried to grab her, unfortunately we both went down.
That was it, Mum and I took her to the ER. Where we were told that she had a massive tumor, a meningioma, in her brain and she would need emergency surgery. The tumor was compressing the right frontal lobe and pushing the left frontal lobe back into the rest of her brain. The doctor and staff treated her and us like this was a death sentance. They had no compassion for this awful news, Mum almost fainted and I desolved into tears. Joanna was so confused, because of the tumor, that she did not understand and she took my hand, as I sobbed, and said "It's ok Robyn, I am ready to die, please don't be sad." It broke my heart! Even when she was suffering she was more concerned about my feelings.
She was transported down to the big hospital by ambulance after a 5 hour wait and put in ICU. She was given massive amounts of steroids and she gained severe water weight immediately. We were told that the tumor had probably been growing for the last 20 years. Because of the location in the frontal lobe her symptoms were not that of a regular meningioma. It affected her emotions, her decision making ability, her cognition and eventually her ability to walk. Surgery was scheduled for the following day but was cancelled, then it was scheduled for that Friday, but had to be cancelled again due to road works under the surgery center that shook the room. Finally surgery was performed the following Monday. It was supposed to last 8 hours but only lasted 3. During her recovery our Mum even ended up in the hospital(a different one, of course, that is located 60 miles away) with a severe upper respitory infection.
The neurosurgeon tried to remove the tumor but during the surgery realised that this was not an ordinary meningioma. The cells were not right. We were told at first that she had cancer and her odds of survival were slim. But this was not the case. It turned out that the cells had mutated into something that was not malignant but also not benign, it had become very aggressive and rare! She would need radiation to kill the rest of the tumor. Unfortunately the tumor grew significantly within the 2 months following her surgery. She would need further surgery and specialised radiation.
We had to cut her hair really short because they shaved the front part so as to open up her skull and the staples were from ear to ear.
We knew that we could not get this care in Spokane so Joanna 'supervised' and Mum and I loaded up my car and off we went to Seattle(293 miles each way) to stay with our brother, Mark, loaded up with hope and fear. Joanna was miserable during the journey as her head was pounding from the pressure of travelling over a mountain pass.
Mark, had told us about a clinic that specialised in brain tumors that we should go to get another opinion at the University of Washington, so I had spent the previous week annoying every UW medical department I could reach to get her an emergency appointment! I finally bugged the correct clinic and they scheduled an appointment for her the following week. We knew immediately upon meeting the neurosurgeon, Dr. Silbergeld, and the radiation doctor, Dr. Halas, that this is where we needed to be. We then spent the next month arranging to meet with a genetic specialist, a pain specialist, an endocrinologist, the anesthesia specialist and anyone else who would talk to us. Joanna and I spent 3 weeks at Mark's near Seattle(293 miles away) early December arranging all of this, came home for Christmas and both our birthdays, then went back over for 7 days to attend 2 full days of appointments at UW, it took us 9 hours to get home after these appointments due to weather conditions being terrible! It was an awful strain on Joanna and not much fun for me.
Joanna's first surgery is scheduled for January 25th , they will be trying to embolize any blood vessels feeding her tumor by going through her groin with an angiogram. The main surgery to try to remove the rest of the tumor is scheduled for January 26th. I will be going with Joanna, taking her to all of her appointments, staying with her during surgery and taking care of her when she is released. She will then be doing Photon Therapy Radiation(UW is the only medical center with this machine) every day for 6 weeks and again, I will be her taxi, caregiver and support with Mum trading off as often as she can, so that I can come home to spend time with my family!
It is my priviledge to help my older sister who took care of me when we were children. She made sure that we were clothed by making our clothes at the age of 12, she made sure we were fed, she even made me a cabbage patch doll, complete with changable clothes and shoes, when my parents couldn't afford to buy me one. She helped me buy diapers and food for my son when my ex-husband ran off with our money and car and left me stranded in Chicago. She gives of herself(even when she has no energy) willingly and without expectation. She deserves so much better than the life she has been given.
We are asking for money to help with the costs involved in travelling back and forth from Spokane to Seattle, from my brother's home to UW every day for 6 weeks. I have to stop working to take care of Joanna for 3 months. We will need food and other supplies. There will be incidentals that we cannot even fathom. We have been trying to take care of this within our family, but we have exhausted our resources.
Please help us fight this aggresive tumor and give Joanna hope that she can wake up with no pain, that she can fully see again, that she can start making her beautiful designs again, and that maybe she can even love again and be loved in return. She has been so brave and strong during all of this.
If you cannot give, we understand, but ask that you please pray for us! Thank you so much for reading this; I am very sorry for this long story, but it has been a long road.
I cannot tell you how thankful we are for all of the prayers and good thoughts for Joanna.
With love and gratitude....
My beautiful, caring, talented older sister, Joanna, has been sick for as long as I can remember. Just after she graduated from BYU she started feeling the symptoms.
She has suffered fatigue, insomnia and overall pain for over 20 years. She has been to several doctors over this time and they diagnosed her with all sorts of conditions; Fibromyalgia, depression, allergies, obesity. They told her that if she could just get out and exercise she would be fine!
In 2008 Joanna had to have an emergency hysterectomy, but this was not the usual surgery as she has multiple tumors in her uterus(one was the size of a babies head), ovaries and even infiltrating her bowels. She was very sick for over a year following this surgery as she was treated very poorly by the hospital and doctors staff and ended up with multiple infections from lack of care.
Joanna tried to do what she was told, she tried to exercise but continued to suffer with such fatigue that she could only stay out of bed for a couple of hours a day. This made it very difficult for her to work on her business and love, the beautiful wedding dresses and jewelry she created; but she did what she could when she could.
About a year ago she started complaining of a splitting headache that would not go away not matter what she tried. She got considerably sicker by the day.
During all of this her husband(now EX) lost his Chiropractic License, and their income and medical insurance; they were sued personally because the malpractice insurance did not cover the incident, and then, after she had stood by his side through the horrible situation, he told her that he didn't want to be married to her anymore. They got divorced a year ago and she was left to fix their home up so that it could be sold. Everything that could go wrong with the house did go wrong! The entire sewage system had to be dug up and replaced, the wooden stair case on the back of the house needed to be completely replaced, the kitchen cabinets all had to be refaced and put up, etc. Thank goodness that a stranger named Cliff showed up on her doorstep one day asking if he could help. He got the house in selling order because Joanna could barely get out of bed. All of these costs had to be put on Joanna's credit card, as she had no income. When the house sold, Joanna had to pay off all of the debts with her portion.
Having no where else to go she moved in with our Mum in a podunk little town called Chewelah.
She had NO emotions about anything that she had gone through. She was still very ill and her headache had not subsided but was getting worse. She then started falling, one minute she would be there walking beside us and the next her legs started looking like jello and down she would go. She banged her head countless times whilst falling and she would just laugh. She was completely blind in one eye, so she could not drive. Time had started to go in reverse for her, she could not recognise how 1:15 did not follow 1:30.
Finally she had come to stay with me for a little while, she had lost the ability to brush her own hair, put on her socks and shoes, have a shower, get food, and she behaved like a 3 year old. I had to help her shower, dress and get food. We thought this was all depression. Then she fell twice in one day and then the next day she fell as I tried to grab her, unfortunately we both went down.
That was it, Mum and I took her to the ER. Where we were told that she had a massive tumor, a meningioma, in her brain and she would need emergency surgery. The tumor was compressing the right frontal lobe and pushing the left frontal lobe back into the rest of her brain. The doctor and staff treated her and us like this was a death sentance. They had no compassion for this awful news, Mum almost fainted and I desolved into tears. Joanna was so confused, because of the tumor, that she did not understand and she took my hand, as I sobbed, and said "It's ok Robyn, I am ready to die, please don't be sad." It broke my heart! Even when she was suffering she was more concerned about my feelings.
She was transported down to the big hospital by ambulance after a 5 hour wait and put in ICU. She was given massive amounts of steroids and she gained severe water weight immediately. We were told that the tumor had probably been growing for the last 20 years. Because of the location in the frontal lobe her symptoms were not that of a regular meningioma. It affected her emotions, her decision making ability, her cognition and eventually her ability to walk. Surgery was scheduled for the following day but was cancelled, then it was scheduled for that Friday, but had to be cancelled again due to road works under the surgery center that shook the room. Finally surgery was performed the following Monday. It was supposed to last 8 hours but only lasted 3. During her recovery our Mum even ended up in the hospital(a different one, of course, that is located 60 miles away) with a severe upper respitory infection.
The neurosurgeon tried to remove the tumor but during the surgery realised that this was not an ordinary meningioma. The cells were not right. We were told at first that she had cancer and her odds of survival were slim. But this was not the case. It turned out that the cells had mutated into something that was not malignant but also not benign, it had become very aggressive and rare! She would need radiation to kill the rest of the tumor. Unfortunately the tumor grew significantly within the 2 months following her surgery. She would need further surgery and specialised radiation.
We had to cut her hair really short because they shaved the front part so as to open up her skull and the staples were from ear to ear.We knew that we could not get this care in Spokane so Joanna 'supervised' and Mum and I loaded up my car and off we went to Seattle(293 miles each way) to stay with our brother, Mark, loaded up with hope and fear. Joanna was miserable during the journey as her head was pounding from the pressure of travelling over a mountain pass.
Mark, had told us about a clinic that specialised in brain tumors that we should go to get another opinion at the University of Washington, so I had spent the previous week annoying every UW medical department I could reach to get her an emergency appointment! I finally bugged the correct clinic and they scheduled an appointment for her the following week. We knew immediately upon meeting the neurosurgeon, Dr. Silbergeld, and the radiation doctor, Dr. Halas, that this is where we needed to be. We then spent the next month arranging to meet with a genetic specialist, a pain specialist, an endocrinologist, the anesthesia specialist and anyone else who would talk to us. Joanna and I spent 3 weeks at Mark's near Seattle(293 miles away) early December arranging all of this, came home for Christmas and both our birthdays, then went back over for 7 days to attend 2 full days of appointments at UW, it took us 9 hours to get home after these appointments due to weather conditions being terrible! It was an awful strain on Joanna and not much fun for me.
Joanna's first surgery is scheduled for January 25th , they will be trying to embolize any blood vessels feeding her tumor by going through her groin with an angiogram. The main surgery to try to remove the rest of the tumor is scheduled for January 26th. I will be going with Joanna, taking her to all of her appointments, staying with her during surgery and taking care of her when she is released. She will then be doing Photon Therapy Radiation(UW is the only medical center with this machine) every day for 6 weeks and again, I will be her taxi, caregiver and support with Mum trading off as often as she can, so that I can come home to spend time with my family!
It is my priviledge to help my older sister who took care of me when we were children. She made sure that we were clothed by making our clothes at the age of 12, she made sure we were fed, she even made me a cabbage patch doll, complete with changable clothes and shoes, when my parents couldn't afford to buy me one. She helped me buy diapers and food for my son when my ex-husband ran off with our money and car and left me stranded in Chicago. She gives of herself(even when she has no energy) willingly and without expectation. She deserves so much better than the life she has been given.
We are asking for money to help with the costs involved in travelling back and forth from Spokane to Seattle, from my brother's home to UW every day for 6 weeks. I have to stop working to take care of Joanna for 3 months. We will need food and other supplies. There will be incidentals that we cannot even fathom. We have been trying to take care of this within our family, but we have exhausted our resources.
Please help us fight this aggresive tumor and give Joanna hope that she can wake up with no pain, that she can fully see again, that she can start making her beautiful designs again, and that maybe she can even love again and be loved in return. She has been so brave and strong during all of this.
If you cannot give, we understand, but ask that you please pray for us! Thank you so much for reading this; I am very sorry for this long story, but it has been a long road.
I cannot tell you how thankful we are for all of the prayers and good thoughts for Joanna.
With love and gratitude....
Organizer and beneficiary
Robyn Zehm
Organizer
Buckeye, WA
Joanna Scattergood
Beneficiary