The Journey has Begun

Gwen and I left for Chicago on Tuesday to begin her Journey. After a long plane ride and way to much walking for her we made it to our apartment about 600PM. We ate and then we slept until the next morning.

Wednesday we went to the Northwestern Medical Center for the first time. It is such a big place and so many people. Gwen and I were in awe to be honest.

Gwen’s first appointment was for lab work. The ended up collecting 21 vile’s of blood for 30 different tests. She was a bit loopy after that but she did great.

After that we went and had a bit of lunch together and we prepared to go meet Doctor Burt. We got to his office and we waited. Gwen was exhausted and we were both nervous.

We sat there for a bit and then the door opened. He is a tall man in in his late 40’s and wore cowboy boots. He was somewhat overly focused on the symptoms and less on the person but we continued. He asked the same questions that Gwen has been asked over 100 times. She answered the best she could but had a hard time due to being so tired, nervous and hurting like hell. He was hard to read but towards the end he asks, “So you want to do this? You know the risks involved, right? You can die from this and we will make you very sick as we reset your immune system.” Gwen looks at him and almost as soon as he closes his sentence she says, “Yes! I want my life back. What else can I do? Nothing!”

He looks at her and says okay and then goes through the rest of the week with her and tells her the process.

We leave and go back to the apartment for the night. We go by the grocery store because it gets really expensive eating out all of the time. I happen to get me a bottle of Whiskey which helps when I write.

We go back and end up ordering Chinese food for dinner and then we go to sleep and get ready for the next day. During this time I went up to the top of the building we are in and took a video for Gwen because she can not walk to the top of the building. I will show her what she can not see anytime I can.

On Thursday Gwen has two appointments. One is to get ANOTHER EMG for nerve response and conductivity. The man giving the test I swear I have dreamed him before. I watch him for body language and the first thing I see is him doing is shaking his head and saying, “Yes, we definitely have a problem, its is CIDP!” He continues the test and I continue to watch him as he shakes his head as to acknowledge his thoughts and confirmations of Gwen.

After this initial torture, Doctor Allen comes in and smiles and introduces himself. Him I can read. He smiles at Gwen and asks if he can confirm some of the results and then proceeds to repeat the tests she just endured. He goes a step further and places a needle about three inches long in different parts of her body to see how her nerves conduct, which is very little. I see him grimace when she grimaces and I see him do the same head nodding when he confirms a thought or result.

I see Gwen cry from the pain and it hurts my heart for I would gladly lay in her spot if I could but I cannot. After about 45 minutes of electrocution it is over and he says that he will be meting with us tomorrow to go into the results and findings and his opinion.

We get ready and then we head to our next appointment with the Neuro-Ophthalmologist for her vision in relation to CIDP.

Gwen sits in the exam chair and the doctors start performing their tests and asking the questions that she has been asked 100’s of times before. After the lengthy vision tests the doctor says that it is hard for him to say if her vision problems is related to CIDP or not. He says it is rare and hard to diagnose. We kind of already knew his response but he does not agree with Gwen’s Neuro-Ophthalmologist in Houston.

After all of this we head back to the apartment for the night and go over what was done today. We spend some time together, talk to the kids and relax in preparation for her MRI’s the next day and our visit with the Neurologist that will either confirm or deny her diagnosis of CIDP. We realize that this being a clinical study the standards for confirming her having CIDP are much higher and could keep her from getting into the program.

The next morning we get up pretty early because we have to be up at the hospital by 830 for her MRI’s. We pack up and get ready to leave so we can come back and get our luggage between her MRI and the appointment with Doctor Allen.

We get to her appointment and I have to run pick up some paperwork for her and tell her I will be back there shortly. The guy taking her back says I can go back with her when I return. Of course when I return she is getting on the table and I am not allowed back. This is the first time I am not allowed to be with her and I do not like it at all. I can not protect her when I cant see her.

I sit and just think and take a ton of pictures while I wait. She finally walks out after a few hours and we both smile as I jump up to walk with her. We head back to the apartment and grab our luggage and check out. We hop in a taxi and head back to the hospital but we decide to get a bite to eat for lunch first. On the way back Gwen sees what she thinks is a souvenir store and decides that see wants to go back to get something for the kids.

We eat our lunch and make each other laugh, partially because we are nervous about her next appointment. We grab our luggage and Gwen decides she wants to walk the two city blocks to the store. Mind you, we are way out of place. We don’t have any jackets because we did not expect it to be cold like it is and we are dragging our luggage behind us. We walk like this all the way to where she thought she saw the store. We get there and guess what? Its a grocery store. We just walked two city blocks with the cold dragging our luggage behind us and Gwen walking with her cane.

All I can do is laugh and tell her that maybe we should ask around for the nearest homeless shelter from the way we look. She about falls over from laughing. We get back to the block we need to be on and as we cross the street a Chicago Traffic Officer walks us across the street and say’s “Where are your coats?” All we can do is say that we are not from here and we all laugh.

We head up and we wait after our little adventure.

We get into the room and Doctor Allen comes in and it begins. He goes through the tests she has been through the last few days and her paper work from Houston. He asks Gwen the typical questions and then performs a few tests. One of them I hate more than anything. He asks her to sit in the chair and to cross her arms and to stand with out using them. She cant and I can see the pain and the frustration in her face each time she tries. I would do anything to give her life back to her.

He finishes up the exam and then he beings by saying that for him to confirm the diagnosis of CIDP her results have to exceed the norm. We get nervous with this wording. He continues to say that from what he can see there is something else going on but not sure what it is. She may have something else along with the CIDP or this may be something totally new. He says that from the findings and from the MRI she just had she meets the requirements for the study and that he is confirming her diagnosis of CIDP and he will not say no and will recommend her for the transplant.

He gives us one stipulation though because of the odd findings. We now have to get a Genetic Study done to be sure that there is nothing genetically wrong with a few other tests. If they all come back negative she is in. He does not feel anything will come back but wants to be safe. We hope that they come back negative for if not there is nothing that can be done except to treat symptoms as they progress.

We feel good about the outcome but now are nervous about the tests. Gwen has been confirmed and all we need is the good news from these tests and then we can begin the transplant.

All in all it was a good trip and we got what we went to Chicago for and now have hope and a path to travel. We will travel this path together and I will be with her by her side always. I will do what I can for her.

This is her journey and I am traveling it with her. I will carry her when she cant walk and I will light any dark path in front of her.

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A Letter to All – I May Look Normal but…

Gwen came across a letter the other day that seems to describe everything she feels and put everything she has in thought, into words. It brought tears to my eyes as I have heard Gwen say these same words. This letter was shared by Elizabeth Casburn Brown originally. I hope that each of you that read this can now understand what it is like to live with CIDP. Although, this letter was written by a lady when she first started dealing with Parkinson’s but it applies to CIDP as well.


I look normal. Don’t let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or two years ago, or 4, depending on when it was you last saw me. I look healthy; I am not.

My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not even be able to get up off the couch. A week ago I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I used to: to work out, take long walks, socialize, keep some semblance of household order, but I may not be capable of it.

If I say, “maybe later”, please understand and accept this for what it is which is not an excuse. It is a reason. I don’t enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I’m not lazy. I just hurt.

I absolutely do not want pity. This is no reason to feel sorry for me–life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don’t blame the world for what I suffer, I don’t rally against God. This is no one’s fault. Not even my own.

I do not crave attention. I didn’t decide one day that I was tired of living like a normal person, and that the means to a life of never again having to work, having my whims catered to, having friends and family treat me specially involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn’t a cry for your attention. It just IS.

I don’t feel sorry for myself. Why should I? Things don’t always work out the way you’d like them to–this is one of those times. I can live with who I am now. I may not enjoy each day as much as I used to, but I still live for each day, and embrace whatever I can get out of life. Pain is my companion… but pain is not me.

The truly hard part–if you cannot accept me for who I am now, I am sorry for you. I won’t waste precious energy chasing after you to cling to a friendship that probably wasn’t as strong as I had once believed it to be. I cannot force myself to readopt who I was before and reassume the same roles. In this–preserving myself and my state of mind–I have to be selfish. If you cannot accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was training together and working out together or just bowling, then do me a favor and let’s quietly part ways with no ill feelings.

My life is going in new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don’t need it. I don’t want it.

Life deals us all a bad hand occasionally. This is my turn. It happens, I accept it. I hope that you can, too.

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May be down but WE are NEVER OUT!

This is Donnie and I am writing for me tonight. I have been staring at a blank word document page for what seems like hours, the blinking cursor mocking my very existence as I struggle to put into words the emotions I feel and the thoughts that I have for my family , my wife and myself and of my loathing of CIDP and the journey we must all take together.

I have noticed over the last weeks that so many people say sorry, say prayers and say that they wish that they could do something but they don’t. That is fine and I understand. It is human nature to worry only when one is affected by an event and not someone else.  I do not get bitter and I will not. The words we receive do indeed mean so much to us.

I guess when I see so many people donating time and money to replace a camera, fund a trip, help pay for a sex change for perfect strangers it kind of rubs me the wrong way and then those the closest to you do nothing at all I am at a loss for words. But it is still early in our journey and people still have to come to grips and have to learn what the hell CIDP is to even feel one way or another. So time is a good thing I guess.

I just wish that more of my fellow humans could and would put their hearts in our situation and feel what we feel and fear what we fear. It is a dark and unknown path that we take together and Gwen more than any of us is the rock and foundation of our lives and our future.

My family, Jake, Vanessa, Paige and our granddaughter Rebecca will all make it through together. As long as we have each other that is all that matters.

One of the goals that I personally had when starting this blog and this page was to be honest about all of our feelings. Gwen may not always agree with my thoughts or my responses but they are my own. We do not want to needlessly worry people, but at the same time we do not want to sugarcoat anything either.

Chronic Inflammatory Demyelinating Polyneuropathy is a downright NASTY DISEASE! It is very numbing, painful and it really sucks to see someone you love loose what they once were. It hurts even more to see how strong they are and how tall they stand especially when they can’t and you try to so be there for them every minute of every day but you can’t. You try to stand back to make sure they keep some resemblance of independence but sometimes you cross the line in helping that you end up hurting their feelings.

The one you love slowly deteriorates and there is NOTHING that you, they are anyone can do about it and you have only one last hope and the fear of that hope vanishing is constant and all because of home, family and money. The very things we all take for granted can take away the thing you need the most because you have to keep them together.

CIDP makes me so aware of things that so many other people take for granted.  The joy of doing something as simple as dancing is magnified tremendously when you live with the knowledge that you could very well be in a wheelchair right now instead of shaking what your mama gave ya. The simple act of getting into our out of a vehicle is not so simple. Checking the mail takes the energy you were saving for the rest of the day.

As honest as I’ve wanted to be with you all, I have to admit that we haven’t been completely honest with ourselves.  I haven’t been lying to myself per se, but I haven’t been allowing myself to feel the myriad of emotions that go along with watching the one you love develop CIDP and everything that’s happened to her over the past few years.  Ever since the beginning of the year, Gwens, ‘PUT ON YOUR BIG GIRL PANTIES” approach to dealing with things has seriously come back to bite me in THE ASS in a big way as I’ve finally reached my breaking point.  I’ve been so angry and overwhelmed by all the bad things that have happened and the negative emotions flooding over me that, for the first time, I truly have begun to feel the stress and the fatigue of watching my Gwen suffer from CIDP instead of living with it.  Even though I’m a self-proclaimed writer, I cannot even begin to find the words to describe how truly awful that this is for me!

Since the beginning of the year, I have seen Gwen’s life become a nightmare. I wait for the bitterness, frustration, and regret that I think has been boiling over in the form of snappiness and a quick temper but I never see it from her.  Never see it! Can you imagine what that does. It lifts me up more than she will ever know and it gives me hope that she will make it through this and that we will all do it together in spite of anything.

I want you to know that the last year and almost two have been utter hell for Gwen but she stays strong in spite of it. To get something like this and to not know why and to have gone through every convention treatment while hoping that each worked and then none working to me, to stay positive through this is astounding!

No matter what she and I have hope. That is all that we have and that is fine. Hope itself can save a world and it can save her. I have to believe it.

Needless to say, I’ve been depressed off and on but she and my family keep me sane and in check. I always write of positive things for other people to read and to learn from and I have found myself lately have to read and relearn what I have written to be there for my Gwen.

The truth is, I’m just like everyone else, I am human and I hurt, I cry, I feel and I fear but I also have faith and hope and the strongest woman I have ever known.  There are days when things are easy and life is good for the both of us.  There are other days when Gwen struggles just to put one foot in front of the other.  All we are doing is trying to make sure there are more good days than bad for Gwen, sometimes it is not an easy thing to do.

I’ve come to realize though that the important thing, the thing that matters above all else, is simply to keep trying and keep loving.  With the dawning of the day comes the opportunity for a fresh start and a day filled with hope.  There are so many things about living with a demyelinating disease that we can’t control, but there are even more things we can.  We can try to manage Gwen’s symptoms through lifestyle changes. Even something as tiny as a change in our attitude can make all the difference. One reason I have been writing more.  By choosing to focus on the positive even though we are often swimming in a sea of negative, we give ourselves the hope we need to solider on through the darkest of times.

I ask all of you to please bear with me as I work through the issues I need to in writing on this blog, my personal blog and on Facebook.  It won’t be easy for me and it sure as hell will not be easy for my Gwen, and they may not be the happiest things to read, some of them may even hurt but however I feel the need to do so on the off chance I might be able to help someone else.  We don’t want your pity, butwe will happily accept your prayers!

I have a TON of articles from various sources I want to post.  I’m also going to post more about the symptoms of demyelinating diseases and the various treatment options available, so keep an eye out for those.  I have to admit, the thing I’m looking forward to the most though, is getting to make new friends for Gwen and I do love you all.

God Bless each of you and all of those to whom you are connected.

If you wish to help you can click this link ( If you can not please post a comment and a prayer….

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“A Matter of Life and Death”

I had to share this story with you all about a woman that went through the Stem Cell Transplant in 2005. I want you to see what she went through and know that Gwen is going through the same thing and will be when we get to Chicago. This story and many others like this give us so much hope. Here is the link to the story below if you want more information ( Also if you want to help Gwen on her Journey click here (

A Matter of Life and Death

PLAINFIELD — Five years ago, Jennifer Osman was nearly paralyzed.

She was being treated for chronic inflammatory demyelinating polyneuropathy, a neurological disorder known as CIDP that attacked her peripheral nervous system, progressively weakening and numbing her to the point where, at times, she didn’t even have the strength to dial a phone.

Jennifer and Rick Osman will celebrate the five year anniversary of Jennifer’s experimental stem cell treatment for CIDP on April 1. After the treatment, Jennifer has had almost perfect health. “She couldn’t do anything. She couldn’t use her arms, couldn’t walk. I had to carry her to bed. Sometimes I had to feed her,” said her husband, Rick Osman. The disease would have been fatal, likely killing Jennifer, a nurse, before her 40th birthday.

But Osman took a risk on a new treatment. Feeling she had little to lose, she joined a study of stem cell transplants at Northwestern Memorial Hospital run by Dr. Richard Burt, chief of the Division of Immunotherapy, Department of Medicine, Northwestern University Feinberg School of Medicine. Burt pioneered the use of stem cell transplants to treat autoimmune diseases, and, in 2002, Osman became the first CIDP patient in the country to receive a stem cell transplant.

Today, she is nearly symptom-free. “I’ve gotten really used to it,” said Osman, 38, who has not received any treatment for CIDP for two years. “This is my life, a healthy life. Back to normal.”

Helpless and alone

Osman was 30 when she was diagnosed with CIDP, which is considered a chronic counterpart to Guillain-Barre Syndrome. She began immunosuppressant treatment. As the disease progressed, she needed the treatment more frequently. It seemed to be losing effectiveness, she said. Jennifer was at the hospital three or four times a week, connected to a machine for several hours at a time for plasmapheresis. The procedure takes blood out of the body; treats the plasma, which contains the antibodies; and returns all of the blood’s components to the body.

One night, after a particularly hard therapy session, the Osmans sat on their couch contemplating what they had been told that day: Jennifer’s disease could eventually attack the nerves in her lungs and stop her from breathing. Then a TV news report about a breakthrough at Northwestern Memorial Hospital came on. The hospital was successfully treating autoimmune diseases with transplants of the patients’ own stem cells. Jennifer inquired about the procedure and was told she was a candidate. “I felt so helpless and alone because nobody seemed to understand it,” Jennifer said. “I didn’t know what the future was going to hold. This offers help for people.”

Dark days

She began chemotherapy to harvest her stem cells, which were frozen for a month. Five days before the transplant, Jennifer endured high doses of chemotherapy to completely wipe out her immune system.

On April 1, 2005, she received the stem cell transplant. Her immune system slowly began to build itself up two weeks later. For two months afterward, Jennifer could barely function. She was heavily medicated, couldn’t eat, and yet vomited six to eight times a day, which left her face bruised and eyes bloodshot. “I had bad days, where different weird neurological things happened,” she said. “I couldn’t taste food for weeks.”

The Osmans stayed at a hotel near the hospital for five weeks. When they returned home Jennifer was still very weak. At one point, a sinus infection put her in the hospital with a dangerously high fever. There were times she felt the CIDP symptoms return, and she had one more plasma exchange therapy session in May 2005. But that was the last time. She took immunosuppressant medication for a couple of years so her new immune system would grow slowly and was off the medicine by 2008.

20 years in the making

Burt has spent more than 20 years developing the use of stem cells to treat autoimmune diseases. “When I first came up with this idea … people said, ‘Why are you wasting your time?’ I ended up following my passion, and it’s been fabulous,” he said.  Northwestern has done about 350 stem cell transplants, Burt said.

Burt has performed the first stem cell transplants in the country, and sometimes in the world, for patients with many autoimmune diseases, including rheumatoid arthritis, multiple sclerosis, Crohn’s disease and systemic lupus erythematosus. The treatment has come a long way, he said, as Medicare and several insurance companies will now cover it. “The amazing thing is, traditional medicine has just kind of come to a stop with these patients,” Burt said. “What we’ve done is we’ve changed that.”

Sharing her knowledge

Now Osman only has occasional mild symptoms of CIDP, such as fatigue and numbness or tingling when she wakes up. “It’s really important to us that people know (about the stem cell procedure), because we found out about this from watching TV,” Rick said. “If we hadn’t seen that broadcast, she probably wouldn’t be here today.”

Jennifer still works as a nurse, though now she does part-time home care. The Osmans field questions from CIDP patients and their families around the world After April 1, Jennifer plans to update the site’s journal with news that she made it to her five-year anniversary — and that the disease is in remission.

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Imagine if you will of a time or a place when life as YOU know it ceases to exist but only in dreams. Imagine one day you can’t wait for that hug or that gentle embrace from your children and grandchildren. Then imagine that the next day you still want that but you now dread the pain that it brings. That same hug and gentle embrace causes you so much pain that you have to turn away.

Imagine if you will a time or a place when life as YOU know it ceases to exist but only in dreams. Imagine one day you can’t wait to see he smiles and the expressions of those around you, your kids laughing and your granddaughter smiling in her school pictures. Then imagine that the next day you still see them but only in your mind’s eye, those beautiful smile and eyes so wide. All you see now is a blur and two of them all. Those same smiles you see in your mind as you turn away as a tear runs down your face so no one will know that you can’t see them the way they see you.

Imagine if you will of a time or a place when life as YOU know it ceases to exist but only in dreams. Imagine one day your digging holes and building gardens that smell of the dirt and the sweet smell of the roses you just planted. What a beautiful site and you did it all by yourself. Then imagine that the next day you need help to get up or to sit down. You can’t walk without a wall and every step you take, takes your breath away because of the pain. This you can’t hide as hard as you try.

Imagine that through all of this you try everything you can but that cure your seek seems to only exist in dreams. There is one last hope and for this you need help to get go back before your dreams. This journey you take, you are not alone nor have ever been. Many are here and always will be. This journey is scary but you will succeed and as you always say, “put on your big girl panties and deal with it” I know you will make it and these dreams your reality once again….

I wrote this from what I have seen my Gwen loose over the last few years and what she and I and our entire family want to give back to her. We can’t do this alone. We need all of your prayers and support. There are so many people that have CIDP and do not even know it or they are misdiagnosed. Part of what Gwen wants to come out of all of this is awareness. We need to educate ourselves and we need to help find a cause and then a cure. For if we cure on neuropathy it can lead to a cure of many and not just CIDP but MS, GBS and ALS to name a few.

So please as you read this think of sharing what you read and saying a prayer and if you can help Gwen on her journey because at the end she and I will indeed pay it forward in helping others as we always have in the past.

God Bless each of you and all of those to whom you are connected or will ever be connected to.

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My Road Map to Recovery

I will be staying in Chicago at Northwestern University Medical Center with the Division of Immunotherapy and Autoimmune Diseases (DIAD). This is the only center in the world devoted to a unique area of treatment and research utilizing stem cell transplantation in clinical trials for autoimmune diseases and vascular diseases. DIAD pioneered and performed America’s first hematopoietic stem cell transplants to treat: Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Phemphigus, Dermatomyostis, Devic’s, Myasthenia Gravis, Polymositis and Scleroderma.

Below is my Transplant Road-map to give you an idea of what I will be going through:

Phase I – Pre Transplant Testing

Week 1-2:  Pre transplant testing – MRI, CT Scans, blood work, pulmonary function tests, etc

Week 2    :  (Friday) I am admitted to the hospital overnight for chemotherapy – I will be discharged the next day after fluid hydration

Phase II – Mobilization

Week 3    :  I will be outpatient and will be giving myself shots to grow my stem cells (neupogen) and  my labs will be checked.

Phase III – Harvest

Week 4   :  I will have my stem cells collected through a process called pheresis. This is usually done on Tuesday, Wednesday. When I am done I get to go home for a bit.

Week 5    :  REST AND FAMILY

Phase IV – Conditioning/Transplant!!!

Week 6    :  Thursday – I will be admitted back to the hospital for my transplant. The first six days I will be getting IV fluids, four days of chemotherapy.

Week 7    :  I will get my stem cells – very similar to a blood transfusion.

Weeks 8,9 etc:  I wait for my stem cells to grow and I have to stay in the hospital during this time.


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Humbling Experience

Hello there. Today or I should say that this week has been a very emotional time for us. Today we went to our first support group and it was nice to be with others with CIDP.

We decided last-night that we will have to ask for help during our journey so we started a page on Go Fund Me for donations for travel and lodging expenses on our Chicago trips for the stem cell replacement.

We have already received a few donations and the reality has hit us more than ever and it is a very humbling experience. We thank each of you that pray or donate. It does not matter. Here is what my husband had posted:


Humility is a tough thing to get. The minute you think you got, you lose it. That is until all things seem lost. I constantly write and communicate with you about what it means to be human and about always paying it forward. You see I live my life in this way and I write only of what I know. No matter who we are at one point in our lives we all need help but for some it is a hard thing to do as it is for me now. I have been watching my wife disappear before my eyes the last few years and we have done everything we could do to no avail.

She has what is called CIDP and it is a very rare disease, 1 in 100K, with very limited treatments. The end result can be death. We have exhausted all treatments but one. Stem Cell replacement in Chicago. This is still in clinical trials but she meets the criteria and this is our last hope. So far they have had a good success rate of putting the disease into remission.

We live in Houston, Texas and as you can guess it will be financially difficult for us as we have 5 children and a daughter getting married this year and a son gradating next year. The treatment means we will have to live in Chicago for up to 3 months and of course all that we have made is going to our children and home and has gone for the treatment of my wife.

I am asking each of you that read this to click on the blow link to my wife’s donation page to help us cover the costs and to pay if forward to us. If you can not donate, we ask for your prayers and thoughts.

We do thank you either way and God Bless each of you and all of those to whom you are connected.

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