As many of you know, my sister Hope has been struggling with her health for sometime now, but only a few of you understand the severity of her disease. I want to explain it to you all, with the hope that you might better understand what she has been going through recently because she has had an extremely rough journey.
My sister has struggled with stomach problems since high school, but her real fight started back in October when she was diagnosed with Ulcerative Colitis. This disease is not well understood and can be confusing to those who never have had to deal with it. Ulcerative Colitis is an autoimmune disease. This means that Hope's body is fighting against itself rather than fighting with her, causing painful ulcers, sores and terrible inflammation throughout her whole colon causing sever pain and flare-ups. All of this causes Hope to spend a lot of her life in the bathroom, loosing lots of nutrition and basically loosing herself.
Back in November her first flare-up began. She was put on steroids and medicine to help with the pain. She lost weight around Thanksgiving and was not feeling great. Around Christmas time she was feeling a little better, but she still was not feeling like herself. In January Hope went into the worst flare-up yet, and it quickly made her life miserable. Hope is still in this flare-up, four months later.
As time has passed since January, each month has got worse and worse, and has lead up to the scariest month for us yet, May. On Sunday May 1st, Hope ended up in the Emergency Room after experiencing sever pain and knowing that something was not right. Her Ulcerative Colitis was getting worse minute by minute, and she knew it. The next day she was admitted into the hospital and stayed there until May 9th. This whole time she experienced terrible pain and extremely difficult nights. Before being discharged from the hospital they started her on an intense drug called Remicade which is called a Biologic, which suppresses the immune system so it stops attacking the colon. The decision to begin the infusions of Remicade was very tough and scary for all of us because of the side effects that came along with it. I wanted this medication to heal my sister, but the fear of this medication taking my sister away from us rather than healing her was stuck in all of our minds.Along with Remicade, she was put on the lowest form of Chemo. The hope was that these two would work together to get everything under control. After being discharged from the hospital the first few days at home seemed promising, but then things began to go downhill quickly.
Hope was admitted back into the hospital on May 17th due to all of the pain, inflammation, ulcers, hemorrhoids, and her dramatic weight loss. She was not able to eat anything with out getting severely sick, which caused my poor sister to be down to a weight of only 88 pounds, and she felt absolutely helpless.
This Wednesday the GI doctors went back in and looked at Hope and labeled her UC as sever. Basically her colon is not healing with any medication or therapy. She wanted to do everything she could to keep her colon, since she is only 22 and did not want to have to be without it. But after her doctors explained to her that keeping it could be a life or death situation, and explained how much better the quality of her life would be if she had the surgery, Hope was convinced that she needed to get it out. Our goal on Thursday was to get her transferred to Mayo Clinic to get a Colectomy, which is the removal of her entire colon, but the next few days changed that plan.
The night before last was the scariest night of Hope's life. She had a high fever of 103, with low blood pressure, a high heart rate and she could not control many aspects of her night. She was transferred to the ICU and was told that she would not be healthy enough to make the trip to Mayo. Although she was disappointed about not being able to get to there, after talking to her awesome doctor, she now knows that it was for the best that she did not take that risk to get to Mayo, because her doctor told her that he was not sure if she would have made it in the condition she was in.
Today she got transferred out of the ICU, and moved to the room she will be staying in before and a while after her surgery that is scheduled for this Tuesday. She is building up her strength and trying to get as much nutrition through her IV as she can before the surgery.
This has been an unbelievably difficult journey for Hope, and it has been so hard for us to watch her go through such pain, and the worry of something going incredibly wrong scared us all. But I am so proud of the strength she has kept, and am so excited for her to be able to finally live the life that she longs for. One without discouragement, worry, stress, helplessness, and pain. We hope that this helps people understand what she has been battling these past months and ask you to pray for her as much as you can. With three ER visits, endless expensive medications and treatments, two long hospital stays, and what will end up being a three part surgery for Hope that will start this Tuesday and continue over the course of the next year I wanted to beginning raising money hoping that it could help my family with the past medical expenses and the ones that are to come. Any little thing will help, and we are all so grateful for any prayer, words of encouragement, or even a donation. To donate to Hope's Healing Fund, you can visit our Go Fund Me Page at https://www.gofundme.com/256xazzv .
We love our Hope more than anything in the world, and the threat of our lives without her has made us do everything we can to make sure that never happens. We want her to be able to recover completely and be able to live a life even better than before she got sick. We will try and keep you all updated, especially the next few days, and we could never thank you enough for all your love and support.