I have formed this Take Steps team because I know the power of teamwork. I know that when we band together, we can have an even greater impact on patients and families living with these diseases.
Here is Rachel's (Soldier Girl) Story, told through the eyes of her mother:
I know that there are many worse stories out there and every day I am grateful and thankful that my daughter's health is as good as it is. However, when it's your child who is suffering and you can't take away the pain and discomfort, I must say it's very scary and alarming and you get a feeling of panic and helplessness not to be able to help or relieve your child.
Rachel is an amazing young woman. She has had many adversities to deal with her entire life but her resilience is remarkable and understated. She is truly my hero.
Rachel was born with Neurofibromatosis (NF), which is a genetic disorder. One out of every 3000 babies are born with it. It is heredity and can also be caused by a mutated gene. As we know, Rachel was born with a mutated gene. NF can affect any nerve ending in the body; learning disabilities are common. There are many more symptoms and issues regarding NF but I will fast forward to Rachel's colitis.
Rachel had never been on an antibiotic until she was 13-1/2 years old. When 7th grade ended, she worked at Bloomfield Hills summer camp as one of her community service projects. Exposure to young kids did not help her immune system and she contracted an upper respitory infection, which turned into pneumonia. Rachel was put on her first antibiotic
She left for overnight camp for a month in July, but she still had remnants of some kind of cough. We got clearance from the doctor so she could go. Unfortunately, her camp experience turned out to be quite a disappointment. Always being the smallest girl, she was prone to teasing and didn't always handle it well. Thus, her camp experience turned out to be disastrous. To make matters worse, she came home, still under the weather, with the same cough and some type of cold. I don't think the stress from camp helped either. She was put on a second antibiotic. She didn't quite get over that infection, so she was put on the third antibiotic, probably toward the end of August. School started shortly after and she began eighth grade, which turned out to be the worst year of her schooling.
One Saturday or Sunday in October, 1998, Rachel started having continual bowel movements. They would not stop and her stomach was hurting. I began to get very concerned so I started to keep tract of the amount of times she went back to the bathroom. I counted over 60 times. I was petrified. I insisted that each time she came out of the bathroom, she drink water to stay hydrated. Needless to say, I contacted the doctor and we met him at the office on a Sunday. I guess he was worried too.
He suggested that I take Rachel to a pediatric gastroenterologist, Dr. Robert Truding, a wonderful human being and an always accessible doctor. Dr. Truding ordered a stool sample and then a colonoscopy. Rachel was diagnosed with ulcerative colitis. She was put on prednisone to bring down the intense inflammation and she also started Imuran and Azulfidine, two oral medications.
Rachel missed about two weeks of school. She had terrible stomach pains and continual bloody, watery stools. Finally, she showed signs of improvement so she went back to school. She had had a small group of girlfriends that she sat with at lunch and hung out with a bit after school. When she returned to school, her face was moon shaped and she looked terrible. She was moody, mean and explosive. Of course, it was from the prednisone, that evil, but needed drug. To make matters worse, the girls in middle school were hormonal. She had such a terrible time with her friends. I'm sure Rachel had her nasty moments, and these particular friendships, her closest, did not work out at all. And this was only November. Besides dealing with this horrible disease, she now had to deal with a lack of close friends and she needed extra help with her schooling. Rachel was assigned an academic support teacher, Judy Rudy, to whom I still hold a grateful place in my heart. Judy was compassionate not only to Rachel, but to me. As much pain that Rachel was in, I was in pain too. My mental state was fragile and it helped me to talk with Judy. She too has colitis, and Crohn's as well, and she gave me strength to help cope with Rachel's situation. She knew how the girls had disowned Rachel and offered me some advice. I spent a lot of time at the school, speaking to teachers and her counselor.
Eighth grade was the year of most of the Bar and Bat Mitzvahs. Rachel had hers in January, 1998 so she was invited back to a lot of them. I clearly remember her going to one in November, while she was still on a lot of the steroidal medications. Gary picked her up from an evening party and told me that Rachel threw up in the car on the ride home. When she got home she ran to the toilet because of an urgent urge to poop. She pooped blood and threw up at the same time and had terrible stomach pains, crying in between throwing up.
There were lots of trips back and forth to see Dr. Truding. Rachel was progressing very slowly. Some days she felt better but then she relapsed with stomach pains, running to the bathroom. By May, actually on Mother's Day, Dr. Truding called me to tell me that he wanted to put Rachel in the hospital and hook her up to an IV and not give her food so her stomach would calm down. I asked if we could wait just a few more days. By some miracle, Rachel took a turn for the better and her stomach started to calm down as the medicine was finally doing the job. Needless to say, Rachel had a year of hell.
Even though we were told the colitis was not inspired from the 3 courses of antibiotics, especially after never having to take them as a younger child, we just weren't sure. It didn't make a difference, but it makes one wonder.
Rachel started high school, ninth grade, with no friends. One of our neighbors was a lifeguard at our neighborhood beach. I got to know her and she told me that she was on the high school swim team and really liked it. She said the girls were nice and no one was left out. It was her influence that inspired Rachel to try out for the team. Even though Rachel did not really know how to swim, they accepted her. This was wonderful as Rachel met new girls and established some new relationships. She even got the most improved swimmer's award!
As the years passed, Rachel was under control with her colitis. She asked her doctor if she could be taken off some of the medicine. Dr. Truding was able to take her off the internal steroid that she had to take but she could never manage to move forward when she tried to taper off the oral drugs. Dr. Truding told her that she had a smoldering case of colitis. If she reduced the drugs, her colitis would flare up. The only way she could become drug free was to have her colon removed. Nope, this was not the choice.
Every now and then Rachel would have a minor flare up and would have to go back on the prednisone. She probably had a colonoscopy every year or two over the 20 years since she was diagnosed.
As she got older and was living in Ann Arbor, Rachel needed to stop seeing the pediatric gastro, so she began seeing Dr. Peter Higgins, a wonderful, caring U of M doctor. She saw a him for a couple of years but then he limited his patients to concentrate more on research. She was then assigned to Dr. Jami Kinnucan, whom I cannot thank enough for her compassion, kindness and excellence as a dedicated doctor.
Then, the bottom fell out! In November of 2016, Rachel started to get stomach pains and loose stools with blood. Dr. Kinnucan put her on prednisone, but it didn't seem to put her in check. Rachel came home for Thanksgiving, still not feeling well. I had not seen her for about a month or more but when I took one look at her, I got nervous. She looked peeked and definitely lost weight. Since she wasn’t feeling better, she spoke to Dr. Kinnucan again. The doctor wanted Rachel to come to the hospital, get checked and maybe start on Remicade infusions. Of course, Rachel was not into going to the hospital so she asked the doctor if she could just start with the infusions. I know Dr. Kinnucan was trying to work with Rachel’s mental state, knowing how she felt about a stay at the hospital so she was trying to get the infusions scheduled.
In the meantime, I had called and left a message for Dr. Kinnucan to call me back. I wanted to understand what was happening to Rachel and why the prednisone wasn't helping her. The doctor reached me and we had a little chat. She really thought Rachel should go to the hospital and she was going to have a bed held for her until midnight. I was filled with emotion, but I knew I had to keep it together for Rachel. She so adamantly did not want to go to the hospital; she wanted to try to wait it out for the Remicade infusions, but I told her to talk to Dr. Kinnucan again. I wanted her to convince Rachel to go to the hospital.
Rachel had a first date with a young man and she didn't want to spoil her evening. While I was flipping out inside, I reached out to a good friend of mine whose son has Crohn's. I asked her about the Remicade infusions but we also spoke about her son's doctor, Ernie Drelichman. She gave me his number and said to call him; he would talk to me about Rachel. So, I did. I needed another opinion about Rachel going into the hospital. I was so torn. In my heart, I knew she should go. Dr. Drelichman is also Gary's customer, so we made the call and we spoke to him, another compassionate and wonderful human being. I gave him Rachel's history and current situation. He thought that if she was walking around on prednisone for the last month, then she could be sicker than we think. He advised that she get to the hospital as soon as possible. I was scared and immediately called Rachel. I was insistent and told her that she had to get to the hospital as soon as she could. Her friend, Josh, drove her around 10 pm and she was immediately admitted and hooked up to an IV.
Rachel spent the next 5-1/2 days in the U of M hospital. She was poked, prodded, x-rayed and hooked up to a constant IV. She was dehydrated when she went in and her blood levels of inflammation were very high. We were told that Rachel might lose her colon. A surgeon called me to discuss the possibilities of surgery. I cried a lot, prayed a lot and couldn't eat or sleep. I was a wreak but I had to hold myself together when we were with Rachel. I did not want her to know how worried I was about her. Again, we were lucky and Rachel turned the corner. Her levels were low enough for her to be released. We took a big, deep and grateful sigh of relief.
When Rachel had her follow up check-up with Dr. Kinnucan, a few weeks after she was released from the hospital, Gary and I went with her. Dr. Kinnucan gave us the analogy of Rachel's condition that it was as if she were in the ocean without a life jacket. That statement shook me to the core.
Rachel has been getting Remicade infusions every eight weeks since she entered the hospital at the end of November, 2016. I am grateful and thankful every day for her sustained, good health. Last year I wanted to get involved with the Crohn's and Colitis Take Steps fund raiser but I just didn't have the mental energy. This year is different and I want to help make a difference and help raise money for critical research and awareness.
I need to add one more piece to Rachel's story. Just because I am the one who let my thoughts flow out of me and shared my emotions, this story is not just about my feelings and Rachel. It is about all of us, her family; Gary, her Dad, and Zach, her younger brother. We felt Rachel's pain, frustration and anger through the years because we are in this journey together. When a child has an illness, it affects them but it also impacts the family. We are a family and as long as we have breath, we will always be there for each other to do whatever it takes and offer support, if and when needed.
We can fund more research that will accelerate better treatments for patients.
We can help deliver education programs for patients and families.
We can help bring the community together and ensure everyone feels safe and supported.
We can fund THE research that leads to cures!
I know we can have a lasting impact on this community. Will you join our team and fundraise with us so that, together, we can make a difference today?