Tina's Fight Against Scleroderma
Donation protected
Most people do not know, but last year my mother was diagnosed with Scleroderma. Scleroderma is a super rare auto immune disease. There is no cure, and no clue where it comes from. Every case is different, making it that much harder to find a cure. The body produces excess collagen which causes the skin and/or internal organs to harden. It can be deadly if it gets into your organs, but is extremely painful and life altering even if only on the skin.
Tina has systemic scleroderma. It started in her hands. She noticed that holding Logan and helping me out hurt her hands. We thought it was just because he was a chunky 10 pound baby. Once she went home, she expected the pain to go away, but it didn't. Then one day, on her and my dad's weekly Costco date, her hands turned black. After a while, they turned back to normal color. This was the start of her diagnosis. Doctors told her she had Reynauds Phenomenon. Reynauds is not uncommon and it is when the smaller arteries that supply blood to your skin narrow, limiting blood circulation. The crappy thing is if she doesn't warm her hands (and now her feet) up and she completely loses circulation, it will never come back.
After countless tests and doctors appointments and weirder and weirder symptoms, she was finally diagnosed with scleroderma.
Her symptoms progessed extremely quickly and doctors tried to control them with medication, but were not successful. The majority of the skin on her body is rock hard. The tightening feeling alone is extremely painful, and something as soft as a sheet touching her skin can cause her to wince in pain. Her hands and feet are incredibly swollen. For a tiny woman, she has sausage fingers and was forced to have her wedding ring and band cut off. Moving sometimes is difficult as her joints are starting to bother her. She hasn't been able to open a water bottle for months. She uses scissors for everything. Acid reflux is a fun new symptom she has added to the list recently.
All of this going on and Tina still goes to work everyday. She never takes days off, suffers silently, and puts a smile on her face. No one ever knows how she is feeling on a day to day basis because she refuses to let this disease make her miserable. She is by far, the strongest person I know. Even when her hands are swollen and look like they are going to pop and are changing color in front of my eyes, she will still pick up Logan and tickle him like it isn't killing her.
Since there are only 2 medications that sometimes work for scleroderma patients, she is already done trying them out. They did nothing. So now, she will be going through an autologous stem cell transplant. Basically, they take 7 million stem cells from her blood, separate the good from the bad, and freeze them. They then give her an insane dose of chemotherapy to completely wipe out her immune system, and then introduce her new, healthy stem cells back into her body and we all cross our fingers her immune system boots up normal. For a more detailed explanation, go here http://www.cancercenter.com/treatments/autologous-stem-cell-transplant/
Now, for the reason for the GoFundMe account. This is being performed by Boston Medical Center. Of course, it is out of her network so every time she goes for a pretest, which there are about a million of, her co-pay is $500. Some of the tests she needs she will be required to pay 80% of. Her hospital stay will be 3-4 weeks, and then she will be out of work for several months. When she is done with the chemo, it will be like she is a newborn. She will need all her vaccinations again, and will have zero immune system. Some people, it comes back quickly, some people, it can take a while. Obviously my dad will need to take time off of work to take care of her. I planned a pregnancy at the worst possible time so I can't even help if I wanted to. The money would be used for her medical costs, and if there is any extra, if my parents need it for household bills, then it will go there. I also might force her to use some of the money to buy a nice wig. She is going to lose her hair from all of the chemotherapy and I think she deserves a nice wig. If somehow there is a miracle and her insurance waves the copay, money will be donated to the Scleroderma Research Foundation.
My mom hates that I started this. It makes her uncomfortable to ask for help. If it was anyone else, she would have started this for them months ago and rallied for them. She is too strong and proud for her own good. Anything would be greatly appreciated. If you cannot donate monetarily, please keep my mom in your thoughts and prayers. I miss my mom. I can't even imagine how she feels as the one going through this. I want to be able to hug my mom and not worry if I am hurting her. Logan needs her healthy so he can terrorize her and show his little brother how to climb all over her and make her laugh. I need my mom. My dad needs my mom. My brother needs my mom. Life hasn't been the same this last year. We are ready to go back to normal and we could really use your help.
Tina has systemic scleroderma. It started in her hands. She noticed that holding Logan and helping me out hurt her hands. We thought it was just because he was a chunky 10 pound baby. Once she went home, she expected the pain to go away, but it didn't. Then one day, on her and my dad's weekly Costco date, her hands turned black. After a while, they turned back to normal color. This was the start of her diagnosis. Doctors told her she had Reynauds Phenomenon. Reynauds is not uncommon and it is when the smaller arteries that supply blood to your skin narrow, limiting blood circulation. The crappy thing is if she doesn't warm her hands (and now her feet) up and she completely loses circulation, it will never come back.
After countless tests and doctors appointments and weirder and weirder symptoms, she was finally diagnosed with scleroderma.
Her symptoms progessed extremely quickly and doctors tried to control them with medication, but were not successful. The majority of the skin on her body is rock hard. The tightening feeling alone is extremely painful, and something as soft as a sheet touching her skin can cause her to wince in pain. Her hands and feet are incredibly swollen. For a tiny woman, she has sausage fingers and was forced to have her wedding ring and band cut off. Moving sometimes is difficult as her joints are starting to bother her. She hasn't been able to open a water bottle for months. She uses scissors for everything. Acid reflux is a fun new symptom she has added to the list recently.
All of this going on and Tina still goes to work everyday. She never takes days off, suffers silently, and puts a smile on her face. No one ever knows how she is feeling on a day to day basis because she refuses to let this disease make her miserable. She is by far, the strongest person I know. Even when her hands are swollen and look like they are going to pop and are changing color in front of my eyes, she will still pick up Logan and tickle him like it isn't killing her.
Since there are only 2 medications that sometimes work for scleroderma patients, she is already done trying them out. They did nothing. So now, she will be going through an autologous stem cell transplant. Basically, they take 7 million stem cells from her blood, separate the good from the bad, and freeze them. They then give her an insane dose of chemotherapy to completely wipe out her immune system, and then introduce her new, healthy stem cells back into her body and we all cross our fingers her immune system boots up normal. For a more detailed explanation, go here http://www.cancercenter.com/treatments/autologous-stem-cell-transplant/
Now, for the reason for the GoFundMe account. This is being performed by Boston Medical Center. Of course, it is out of her network so every time she goes for a pretest, which there are about a million of, her co-pay is $500. Some of the tests she needs she will be required to pay 80% of. Her hospital stay will be 3-4 weeks, and then she will be out of work for several months. When she is done with the chemo, it will be like she is a newborn. She will need all her vaccinations again, and will have zero immune system. Some people, it comes back quickly, some people, it can take a while. Obviously my dad will need to take time off of work to take care of her. I planned a pregnancy at the worst possible time so I can't even help if I wanted to. The money would be used for her medical costs, and if there is any extra, if my parents need it for household bills, then it will go there. I also might force her to use some of the money to buy a nice wig. She is going to lose her hair from all of the chemotherapy and I think she deserves a nice wig. If somehow there is a miracle and her insurance waves the copay, money will be donated to the Scleroderma Research Foundation.
My mom hates that I started this. It makes her uncomfortable to ask for help. If it was anyone else, she would have started this for them months ago and rallied for them. She is too strong and proud for her own good. Anything would be greatly appreciated. If you cannot donate monetarily, please keep my mom in your thoughts and prayers. I miss my mom. I can't even imagine how she feels as the one going through this. I want to be able to hug my mom and not worry if I am hurting her. Logan needs her healthy so he can terrorize her and show his little brother how to climb all over her and make her laugh. I need my mom. My dad needs my mom. My brother needs my mom. Life hasn't been the same this last year. We are ready to go back to normal and we could really use your help.
Organizer
Nicole Gardina Lane
Organizer
Brockton, MA
