I am filled with so many different emotions right now. I’m anxious, sad, scared, nervous, reminiscent, and hopeful all at the same time. What is causing me to feel this way, you may ask. Well, this past Saturday, my boyfriend, two younger sisters and I drove 2 hours south to meet my parents at the airport. My parents took a flight to Chicago (we live in Maine) and will be there for an entire month before returning home for a 3 week period, and flying back out to Chicago for another full month.
My father has a rare condition called CIDP. CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. This is an auto-immune disease, which means his very own immune system is attacking his body, and in particular, eating away the outer lining of his nerves.
This condition causes my father a lot of pain, fatigue, muscle aches, burning and shooting pain throughout his body, numbness in his hands and feet, loss of strength and more.
My father is only 51 years old. He worked in a paper mill since the age of 17, and supported my Mom, my two sisters and I by working very hard shift work, and taking as many overtime shifts as he possibly could. Around 1999-2000, my Dad began taking classes at a local college, towards earning a degree in Mental Health and Human Services. On top of working overtime shifts in the paper mill, he attended classes, and maintained a 4.0 GPA throughout his college years. He now has his Master’s Degree, and works as a Substance Abuse Counselor for Manna Ministries.
About 5 years ago, my Dad started having numbness in his feet. Having worked in a paper mill, which entailed standing on a concrete floor for hours at a time, he didn’t really think much of it. He let this go on for a while before finally seeing a Dr. One day my Dad was having severe back pain, so my Mom forced him to go to the ER to be looked at. The ER referred him to a neurologist. After many, many tests, it was found that my Dad had CIDP.
My Dad was put through every treatment there is for CIDP. He tried IVIG, which is intravenously administered antibody extracted from plasma of 1,000 donors, immunosuppression, which reduces activation of the immune system, steroids, and plasma exchange. None of these treatments really helped my Dad, and actually made him feel much worse.
For years, while he was working in the mill, my Dad got little to no sleep for days on end because he was working so hard. In his free time, he would take my family camping, go hiking and biking for miles and miles at a time, climb mountains, maintain a huge vegetable garden and more. He was always an over-achiever, and still is to this day. He works a 40 hour week every week counseling people, even though it takes a toll on his body. He is such a strong man, and a true inspiration. He forgets about his pain, so that he can help others with theirs. This is how my Dad has always been. He is the most loving, giving man I know.
Now, because of CIDP, my Dad can barely walk. He uses a walking stick, and stumbles and even falls down quite often. People who don’t know my Dad, and his condition, often think he is drunk because he cannot walk straight, and without stumbling.
The last time my parents went out to eat at a restaurant, my Dad lost his balance and fell into another man. He was mortified, and vowed that his restaurant days were over, because he has such a hard time walking through their narrow paths, and he also has a hard time feeding himself without his hands constantly shaking. Some days his hands don’t work right, and he doesn’t even have enough strength to turn the key to start his car. This is very humiliating for him. He has always been a very proud man, and now he has to rely on other people to help him do simple tasks, like starting a vehicle.
Their flight to Chicago on Saturday was just the first step in my Dad’s stem cell transplant. My parents will have to stay in a hotel (which they have to pay for out of their own pocket) for an entire month, while my Dad receives outpatient treatment at Northwestern University. He will undergo many tests, and receive medications to stimulate stem cell growth. He will have his stem cells harvested. He will also receive a shot of chemo to see how his body will react to it, and then he and my Mom will fly back home to Maine for 3 weeks for a resting period.
My parents will then fly back to Chicago at the end of October, and my Dad will be admitted to the hospital for another month. During this month, my Dad will go through chemotherapy to completely destroy his immune system. He will have no immune system left at all. Then, they will infuse the stem cells they harvested, to build him a brand new immune system. It will take TWO years for his immune system to be entirely back to normal.
During their time in Chicago, my parents will not be able to work. They are both currently working full time. My Mom works very hard as a CNA for a nursing home. This procedure is going to cost my parents at least $50,000 out of pocket. They will have flight, hotel and food expenses as well. This is really going to put a hardship on them.
This procedure has been proven to work in other patients. There are other patients who are now walking and running, are pain free and not on any medications at all. I want this more than anything for my Dad. He has worked so hard all of his life, and he is still very young, and has many years ahead of him. I want him to be able to enjoy those years, instead of watching his body grow weaker and weaker.
Here is an amazing video done by a recent stem cell transplant recipient, that explains CIDP and the stem cell treatment process. http://www.youtube.com/watch?v=18-HW1A_18g This video has been a true inspiration to me and my family. My Dad will be meeting Andy, the man in this video later this month. I can’t wait to hear about their visit.
My Mom, my sisters and I want my Dad back more than anything. He has been going through hell for 5 years now, and he doesn’t deserve this at all. The treatment he will be going through is going to be absolutely awful. He is going to feel very sick for a while. My Dad deserves to live a normal, healthy, pain free life. Once this treatment is all done with, his goal is to open up his own counseling office to help others in need.
I’m anxious because I’ve never been this far away from my parents for this long of a time. They’ve always lived an hour north of me. While I don’t get to see them as often as I would like, just knowing they are within driving distance eases my mind. Now, they are a 2.5 hour (and $500+) flight away from me. They are in a different time zone. For an entire month, and will be for another month later this year too.
I am sad, because I miss my parents. I truly miss them. Chicago feels SO far away to me right now. I text with them, I talk to them on the phone, I keep up with them on Facebook, but it’s just not the same as having them here in Maine.
I am scared. I am scared of my parents being in such a big city for so long of a time. You always hear about all the crime that happens in big cities. I pray that my parents are safe at all times. I am scared at the thought of my Dad not having an immune system for such a long period of time. To hear those words “no immune system” just brings so much fear to me. That’s such a scary thing to think about. Can you imagine not having an immune system??
I am nervous. What if something happens to my Dad while he’s there? They are so far away. What if this doesn’t help my Dad? What if all of this was for nothing?
I am reminiscent. As my parents take this journey together, I can’t help but flash back to my childhood and think about the good times we had. The times when my Dad was healthy, and I felt so safe in his care. He has always been a wonderful provider, and the strongest man I know. I think back to all of the places my Dad took us – camping, trips to Santa’s Village & Story Land, hiking Maine’s beautiful trails, climbing Mt. Katahdin, the Caribbean cruise he took our whole family on… I have so many great memories with my parents. I miss them tremendously right now.
I am hopeful. I am hopeful that this treatment is going to work for my Dad. I am hopeful that six months down the road, he will show a drastic improvement in his health. I am hopeful that this CIDP will BE CURED. I am hopeful that my Dad will feel strong again. I am hopeful that he will not have to rely on a walking stick to walk anymore. I am hopeful that my Dad’s life will return to normal, and that he will see all of his dreams come true.
I feel like this whole thing has happened for some reason. A reason I don’t quite understand, but I know this had to have happened to my Dad in order to teach a lesson. Whether it be to my sisters and I, to appreciate our parents more, or to be inspired by what my Dad has gone through, and goes through on a daily basis. Whether it be to my Mom, who has been forced to come out of her shell since this whole thing started. She was always so nervous and timid around people, and now she’s been thrown into an unfamiliar city, surrounded by complete strangers. Whether it be to my Dad, to teach him to slow down, and to put himself first for once. I don’t think there has ever been a time in his life when he has put himself before others. Now, he needs to. He needs to focus on getting better.
My Dad, the strongest man I know, got this debilitating disease that has weakened his body and his spirit. For most people, this would be absolutely crushing. If this had happened to me, I don’t know that I could push through the pain enough to work a 40+ hour work week. I don’t know that I could still meet with patients on a daily basis to help them with their problems, when I have plenty of my own to deal with. I don’t know that I could look this treatment in the eye and take it on, knowing how scary it is, and knowing the pain and misery it’s going to cause at first.
For whatever reason, this path was chosen for my Dad. He is strong enough to go through this. The doctors at Northwestern University will learn more because my Dad went through this procedure. They will be closer to announcing a cure for CIDP, and to using this same treatment to cure other diseases, such as Rheumatoid Arthritis and MS. There is a reason for all of this happening. We may not see it just yet, but it’s there.
This is a picture of my Mom and Dad atop of Mt. Katahdin, taken before my Dad got sick. He used to love hiking. This stem cell treatment is one more mountain my parents have to climb together.