Wednesday, July 31, 2013

My Bags are Packed

July 31, 2013:

The time has come for us to pack our bags and prepare for our flight home tomorrow. In my wildest dreams I could have never imagined a more positive outcome for me and my family. Tomorrow, as we board our plane, I am sure that I will be sad to leave Chicago, but I know that I will be happy to return home. Our community has rallied together to make sure that our home is all ready for our return. But more importantly I cannot wait to get home to see my daughters. Even as well as my health is progressing, there will be no better feeling than having our family reunited.

Also, as my time in Chicago draws to a close, so will my daily blogs. From here on out I will most likely provide weekly updates. I will also use the blog to post updates about the foundation I am starting. The response to my blog has been amazing. I want to thank all of you who tuned in nightly to take part in my journey. For now, it is not good bye but rather see you later.

Tuesday, July 30, 2013

Your Neurologist Said What?

July 30, 2013:

Through sharing my blog I have been contacted by several CIDP patients who are either former transplant recipients sharing their stories with me or they are interested in more information about the stem cell transplant process. Today, I came across a CIDP patient who has been discussing the stem cell process with their neurologists. From what I can gather this patient has a neurologist in one city that coordinates with a local neurologist in their home town. While presenting their case to the coordinating neurologist the patient was met with resistance. Apparently this neurologist felt that the stem cell procedure was "too aggressive of a treatment." When I read those words I almost fell on the floor. WHAT? I have had CIDP for 20 years and I have been through all of the standard "passive" treatment plans. For most of us, these treatments do not work. In my case, I had tried virtually every treatment option out there and it was time to get aggressive.

Now, let me be clear: STEM CELL TRANSPLANT IS NOT FOR EVERYONE. If your symptoms are under control and you are happy with your quality of life then you are where you need to be. I discovered the stem cell transplant program at Northwestern because I had become dissatisfied with my treatment options and my quality of life. My life revolved around being hooked up to an IV pole while IVIG was pumped through my veins. And for what? My quality of life was deteriorating. I had gone from walking with no aids to being virtually wheelchair bound. This is what the standard treatments had done for me. I was not going to just sit there wasting away. That is what drove me to Dr. Burt.

Another argument I hear is that it is unknown what the true long term effects of the stem cell process will have on a patient. Well, from a doctor's standpoint I will give them a pass on this one. Doctor's have to tread lightly on this issue because it is a research study and we are a sue first nation. However, I know what the long term side effects of prednisone are. I am 33 years old and I have osteoporosis. I also know the long term financial cost of IVIG. So, for me when I was deciding on whether or not to pursue Dr. Burt's study, I did not ask permission from my neurologist. I did my homework and presented it to my neurologist in a way that said, "I am doing this and it would be great if you could support me. If not, I understand and you need to understand why I need to do this."

It is the discussions like the one I had today that reenforces my drive to start educating neurologists. I have seen the benefits of the stem cell transplant, and I would recommend anyone who is thinking about it to come to Chicago and meet Dr. Burt. I understand that these neurologists make a living on repeat business. Therefore, if we all get healthy, we will have no need for them.  The truth is we have to decide for ourselves what we want our treatment plan to be and fight for it.

Here are some articles and information that you can take with you to show your neurologist.

http://www.stemcell-immunotherapy.com/publications_pdfs/CIDP.pdf
http://clinicaltrials.gov/ct2/show/NCT00278629
http://www.medicine.northwestern.edu/10/mar/matter-life-and-death
http://www.gbs-cidp.org/topic/still-cured/
http://www.stemcell-immunotherapy.com/
http://www.neuropathy.org/site/News2?page=NewsArticle&id=8488


I am sure there are other articles.  For those who follow this blog if there is other information, please let us know in the comments.  The more articles to support this HSCT the better. 

Monday, July 29, 2013

The Power of Giving

 July 29, 2013

We have all heard the expression, "It is better to give, than to receive." I could not agree more with this statement. However, I have found that the more I give; the more I receive.

Today I had to go back over to the hospital to have my labs drawn. While Ann and I were over there I wanted to stop by and see my friends who were still in the hospital. Ann and I spent most of the afternoon laughing and bonding with our new friends. Sitting there sharing stories brought a sense of enlightenment to me. Their stories and my story are so similar. There is no other explanation than God has placed us in each others life because this is what we needed. "Do not be like them, for your Father knows what you need before you ask him" Matt. 6:8 (NIV).

Over this past month as I have become more open and giving of myself, I have become overwhelmed by the outpouring of love and support I have received. Each day I have received numerous cards, too many to count, care packages, and money. "In everything I did, I showed you that by this kind of work we must help the weak, remembering the words the Lord Jesus himself said: 'It is more blessed to give than to receive" Acts 20:35 (NIV).

In a world that is becoming overrun by selfishness, greed, and hatred; it is refreshing to know that there are still people who are willing to unselfishly give of themselves. As I write this entry my home is being invaded by individuals who are scrubbing our house from top to bottom in preparation for our return. It is the example of these individuals that has inspired the Bryan's H.O.P.E. Foundation. I have witnessed that by giving only a small portion of myself, I have received far more than I could ever imagine. Today, while I sat in the hospital talking and listening it was apparent that by me giving of my time I was able to give hope to those who needed it. So, lending an ear to a friend or being a shoulder to cry on may be some of the greatest gifts we can give to our loved ones. "You may say I'm a dreamer, but I'm not the only one. I hope someday you'll join us. And the world can live as one"-John Lennon.


Sunday, July 28, 2013

A Plan for Recovery

July 28, 2013:

During the discharge process, Amy was very clear on what my medication regimen would be. I will be on an antiviral medication, Acyclovir, for 12 months. I will be on an anti-fungal medication, Dilflucan, for 3 months. I will also take an antibiotic, Bactrim DS, every Monday, Wednesday, and Friday for 3 months. Last she prescribed Alpha Lipoic Acid to help with nerve regeneration pain. Amy also gave me a prescription for a physical and occupational therapy evaluation.  So, I will be at the mercy of my insurance company on how many visits and how often I can get therapy. The good news is I am sure that most of the things I do at therapy I will be able to do some version of it at home. As I sat there with Amy going over what I can do and what I cannot do I became more comfortable about leaving the hospital. However, I am asked to not have any elective surgeries for 1 year, not eat at salad bars and deli counters for 3 months, no swimming in public pools for 3 months, and no cleaning/laundry/home remodeling/gardening/yard work for 3 months. She kept reassuring me that I should do what I was comfortable with. That is why I feel it is important to have a Plan for Recovery.

Throughout the entire stem cell transplant process virtually every detail was planned out until now. Back in the Spring I was sent a calendar that outlined the dates and times of all of my appointments and hospitalizations through July. Every i was dotted and every t was crossed. I knew what medicines I would be taking and when I would be taking them. Now, I have been discharged and the rigorous schedule that I had been accustomed to is also gone. I have developed a "now what?" feeling.

To combat this feeling of uncertainty I have developed a rough 1 year plan for my recovery. For at least the first 3 months, I will only be attending therapy and going for my lab draws.  I would prefer immediate family to personally visit the house, but others may feel free to call because I will enjoy talking with all those who have been so supportive during this journey. Visitors will be asked to wash their hands and wear gloves in the beginning. Do not bother stopping by if you are sick or have been around someone who is sick. Even if you think it may just be allergies, please don't even take the chance.  I ask that visitors not be offended by me not wanting to having physical contact. Shoes will not be permitted to be worn through the house. I do not want to even think where most shoes have been, and I don't want those germs tracked through my house. I know that this may be overkill, but this is my recovery and I am going to take all necessary, and unnecessary, precautions.

Shortly after we return home, Ann and my daughters will be returning to school. I am very nervous about this, but we have developed a plan to help reduce the outside germs brought into our home. When they return home from school they will immediately change their clothes and wash off. Their clothes will be put in a garbage bag and carried to the basement where our washer and dryer are located. My daughters will not be permitted to have friends stay the night. I do not want to offend anyone, it is just I want to allow myself time to heal.

I will be having my blood drawn weekly to see where my counts are. Between the 3 to 6 month mark, considering my counts are good, I will begin to allow friends to visit. I know this will be about right in the middle of winter, so if you are sick stay away. At this time, I am also looking to venture out of the house a little more. I will mostly just visit with family in the beginning. I am still going to avoid large crowds and I will always be armed with my hand sanitizer.

It will be during the 6 to 12 month range that I will begin testing my limits, as long as my blood counts continue to be normal. This is where I am going to kick off the training wheels and start stretching my comfort levels. I am hoping that I will feel comfortable enough to go to dinner or attend whatever activity my daughters are involved in. I also want to have my foundation up and running around this time.

Please understand, this is NOT a recommended schedule prescribed by Amy or Dr. Burt. This is MY plan for recovery. I will be recovering during the Ohio cold and flu season. I am taking the steps I think I need to take to ensure that I am not taking unnecessary risks. I hope that you understand my need to heal and recover in a manner that I am comfortable. But remember plans are subject to change.  "Everyone has a plan 'til they get punched in the mouth." -Mike Tyson

Saturday, July 27, 2013

Freedom

July 27, 2013:

After walking with the cane in the hospital, I sent Ann out to buy me a cane to use around the apartment. You cannot imagine the since of freedom I have just from being able to walk with a cane. For so long I have been highly dependent on others to help me. I had gotten to the point where I was highly dependent on Ann. For me, as a man, this was such a humbling time in my life. I needed her to help me dress, put on my clothes, put on my shoes, and often times help me in and out of the bathtub. The problem was that my mind was still sharp. It was like I was outside of my body watching her help me. I just kept thinking, "Is this really my life?" Experiencing this caused my spirit to slowly break. However, as I reflect on my journey, I am thankful for those days because they make me appreciate the fact that I am making small strides toward regaining my freedom.

Today I began to get antsy sitting around the apartment. There are only so many times I can walk to the bathroom or kitchen. Don't get me wrong, I am proud of these accomplishments. The real issue was that I still had two friends in the hospital and I needed to visit them. I needed to see with my eyes that they were doing well. I needed to offer any support that I could to them. I know what it is like to have a visitor stop by when you are in a hospital hundreds of miles from home. I remember those days and if I am able to offer a little comfort to someone that is what I will do. As we were heading back to our apartment I had made a reference to Ann that I think I had brightened up their day. She responded with something to the effect of, "I don't know about them, but I know seeing them brightened up your day." Ann was right seeing them did brighten my day.

Throughout this journey, I have been enlightened and renewed in so many different ways. Today I was able to finally feel the freedom that comes with doing things for oneself. During our visit to the hospital, Ann had to make a stop by the gift shop. Since the gift shop was little I was not comfortable going in. I had Ann tuck me over in the corner away from people while she went in. Normally, this would have been a little depressing for me. It usually made me feel trapped and vulnerable because without her I could not move. I did not have that feeling this time. I knew that armed with my new cane I now had the freedom to move about; even if it was only a few steps.

The freedom that one gains from being able to accomplish a simple task of getting dressed is often just a given to a "normal" person. That is not the case for us CIDPers and others who suffer from chronic degenerative diseases. For some of us, we lose these abilities and they never return. They become only a distant memory of what used to be. Then there are some of us who regain these functions again. When that happens there is no better feeling. It is often complete amazement and joy. So remember as you hit your knees tonight don't forget to thank God for the freedoms that you are experiencing today.




Friday, July 26, 2013

T.G.I.F.

July 26, 2013

My first full day of freedom has been quite uneventful. I am pretty sure that I have not moved off the bed except for my trips to the bathroom. You cannot even imagine how nice it is to not have to pee in a plastic jug. After 15 days of that it was almost foreign for me to actually pee IN the toilet. It truly is the little things that we often take for granted.

Waking up this morning it was so refreshing to not have been woken up for those 2 a.m. blood draws. Throughout the day I have found myself continually wondering about my fellow stem cell transplant buddies. There appears to be no bond like the bond that is formed by individuals when they simultaneously have a life altering experience. I will forever be grateful to Dr. Burt and his team and I will forever be connected to my transplant compadres .

My one shining moment for today has been that I walked to the bathroom while only lightly holding onto Ann's hand. Unfortunately, Mom was taking an afternoon nap and, for some reason, Ann could not focus on me while also video taping it. As I continue to document this journey my only real regret is that I do not have many pictures or videos of me to demonstrate how far I have come in this short amount of time. For those who know me personally I think it is quite shocking to see the things I am able to do now. I just wish that the people who do not personally know me could get the full perspective of how the stem cell transplant has miraculously changed my life forever.

Whether it is peeing in the toilet or standing up from a chair, it is about the little things. I am just as guilty as the next person when it comes to this, but it is the little things that create the biggest impact. "Show me a man who cannot bother to do the little things and I'll show you a man who cannot be trusted to do the big things"-Lawerence D. Bell

Thursday, July 25, 2013

Day +9 Discharged

July 25. 2013

Last night around 9:30 p.m. our time I spiked a low grade fever of 100.7. When the nurse read my temperature my heart dropped. I knew what the protocol was for this was and it included blood cultures from my central line, blood culture from a vein, urine culture, and a chest x-ray. I just kept thinking this cannot be happening. My worst nightmare was that I had an infection and my progress was going to be delayed. I was crushed. Then after the nurse paged Dr. Burt, he just ordered  me to only have blood drawn from my central line. For some reason this eased my mind. I had a suspicion that Dr. Burt did not believe I had an infection and I was able to get some rest for the night.

This morning Dr. Burt and his team came bursting through the door with huge smiles saying, "Congratulations. You did it. You are going home." I was stunned. What do you mean? I had a fever! All of these thoughts were bursting through my head. Before I could utter a single thing, Dr. Burt began explaining to me that sometimes patients will run a low grade fever when the stem cells are engrafting into the bones. So, the fever was actually a good thing. How was I to know when all along this place was making me paranoid about fevers. And, what does engrafting mean anyway? In a nutshell it means that my body has officially accepted the stem cells and the healing has begun.

Another concern of mine during Dr. Burt and I's morning meeting was that my white count was now 0.8. Don't get me wrong, I was happy that I was getting discharged, but I know that the minimum acceptable white count is 3.5. Again, my mind began bursting with thoughts of, "What are you doing sending me out into this world with counts still that low?" "Are you seriously wanting to kill me?" Again, who am I to question Dr. Burt? They drag their feet during the discharge process so they can get one last set of labs. My second set of labs returned this afternoon with a white count of 2.6. What a relief that was.

Today has been bittersweet. I am happy to be leaving the hospital, but at the same time I am scared to be leaving the safety of this place. I have been more than physically healed. My mind, body, and spirit has become refreshed and renewed; and how can I forget my new, growing immune system.

I have met a lot of really nice people who I will forever be connected to because of our experience at Northwestern. Below is a picture of all my new friends along with some of the wonderful doctors.


                     From left to right: Kelly, Me (Bryan), Monique, Amy Morgan, Doug, and Ben

Finally, I received one last visit from Drill Sergeant Ashli, my physical therapy assistant. We had been discussing a goal of trying to walk with a cane before my discharge.  I was so glad she walked through the door with cane in hand. One more hurdle I needed to jump before leaving. Here is a video of my first attempt at walking with a cane.

With my final bow, my PICC line was removed and I was whisked away to the sanctity of our apartment. We will continue to stay here in Chicago for another week. This will allow me to have one final blood draw before we travel home. I know that these next few days will be difficult because all I want to do is get home to see my daughters. Patience is a word that I must focus on. I want to be as healthy and strong as I can when I see their faces.

Another day I am in simple amazement of the things I am able to do. I know I have said it before but there is no way God does not have his hand on Dr. Burt's shoulder. Please remember and pray for my new friends as they continue their journey. I would also like to conclude by saying that my results are a product of all the prayers that have been sent up to God's ear on my behalf. Thank you all so much.

Wednesday, July 24, 2013

Day +8 Bryan's H.O.P.E.

July 24, 2013

After a productive Tushy Tuesday, today was more about rest, recovery, and stretching. I have been receiving the neupogen shots since day +5 and I am beginning to feel some mild bone pain in my lower back and femur bones. The pain is very manageable right now. As long as I keep repositioning every so often I can get the pain to go away on its own. On a positive note, my white counts have gone from less than 0.1 to 0.1. I have made a commitment to listen to my body; and today my body said, "Slow your roll, Bryan Hinkle." So, for today, I will listen to my body.

This morning I had my door open while Dr. Burt and his team were prepping for their entrance when my nurse walked up to inform him I was experiencing some bone pain. Hearing this news Dr. Burt poked his head in my door gave me a smile and a thumbs up and said, "Great. We are heading in the right direction." When the team entered the room I had set the laptop up and was prepared to give them a grand presentation recapping yesterday's progress. Upon the completion of the presentation, Dr. Burt proudly step forward, putting both hands on his hips and said, "You need to share this information. I do not know why neurologists are so reluctant to listen. They just keep prescribing failed treatments."  Little does Dr. Burt know, but I am already planning on how I am going to share this information with the world. 

Ann and I have discussed how can we share not only the wonderful work being done here at Northwestern, but we also want to find a way to help others who are suffering from chronic diseases. Over the next year, I am going to be busy getting the paperwork in order to set up our non-profit organization. The name of this organization is going to be Bryan's H.O.P.E. This will stand for Helping Other People Endure. One of our first priorities will be to set up an educational division geared toward educating individuals about CIDP. Then, we will work on uplifting others during their hospital stay.  In the beginning, our contributions may be as simple as sending cards to individuals. Eventually, I would like to work toward providing care packages to patients. The ultimate goal will be to get to the point where the foundation will be able to assist individuals with chronic diseases and their families, financially. All of these ideas were simply stolen from individuals who have supported me over the last 20 years. I know how special it feels to receive a card while you are staying in the hospital. It is amazing how one small gesture can change someone's life. 

This foundation will merely be a product of all the love and support  my family and I have received. I thank everyone who has joined me on this journey once again. I, also, HOPE that you will continue with me along my next journey.

Front

Ann designed these t-shirts on Custom Ink.com, but we would like to get them printed locally.  This is just one design idea for our foundation "kick off" event next Spring/Summer.  Stay tuned....






Back
Back of Shirt



Tuesday, July 23, 2013

Day +7 Tushy Tuesday

Warning the material you are about to read my be too graphic for some readers. Viewer discretion is advised. Also, these are trained professionals so please do not try what you are about to see at home.

July 23, 2013:

Tuesday around Northwestern Hospital is affectionately named "Tushy Tuesday". This is not something I really want to share, but I want those who come after me in the stem cell transplant to be prepared for the awkward conversation you are going to have with your nurse every Tuesday. As part of infection control Northwestern Hospital performs an anal swab to test for Vancomycin-resistant enterococci (VRE). VRE are a type of bacteria called enterococci that have developed resistance to many antibiotics, especially vancomycin. This is an active bacteria that lives in our intestines and on our skin. Due to the fact that this bacteria is considered a "super bug", meaning that it is a type of bacteria that is only treatable by a specific antibiotic, people with weakened immune systems are at high risk of developing this infection. That is why it is so important to perform a "Tushy Tuesday". For more information about VRE you may want to visit this website: http://www.webmd.com/a-to-z-guides/vancomycin-resistant-enterococci-vre-overview.

Now, that we have this uncomfortable conversation out of the way I would like to show you how I have been working my tushy off  this Tuesday.  My day started off with the Occupational Therapist coming in.  Here are some of the upper body workouts that we are working on to build range of motion, strength and endurance of my muscles. 
Notice that I am rocking my camo pants in honor of good 'ol Perry County, Ohio

All that's missing is the tan!














 Later in the day we went on a walk with Physical Therapy.  Here is a video of me during part of the walk and attempting stairs!

 
What comes up, must come down!


To finish the day, I wanted to attempt getting up and down out of a chair. 



Hard work beats talent when talent doesn't work hard.  

Rise up!

 

Monday, July 22, 2013

Day +6 Call the Blood Bank.

July 22, 2013:

Well 6 days post transplant and blood counts are continuing to drop. I have been battling a resting heart rate of around 115 beats per minute and a standing heart rate around 140. The nurses and doctors seemed to be puzzled by the fact that I not feeling light-headed or faint. However, Dr. Amy felt that it might be a good idea to go ahead and give me 2 units of red blood cells to try and combat the high heart rate. This is a normal part of the recovery process. I asked Amy earlier if it was possible to go through the entire process and not need either red blood cells or platelets. She informed me that she had only seen 2 patients go through the entire process and not need any blood. I secretly was hoping to be the third patient. Oh well, it is not like I had any control of it.

Right now, I am just thankful to those individuals who go out and donate blood. I know that there are many individuals in the areas back home who work for the American Red Cross. I hope they don't mind, but I would like to thank Lori Gaitten and Trista Woolen. I know there are many others who work with these individuals, but I have personally seen the effort these two put into their work. So, if you can, please donate because you really never know who you are helping.





Sunday, July 21, 2013

Day + 5 Neupogen Shots

July 21, 2013:

Ann and I woke up feeling more rested after finally getting a good night's sleep. It amazes me how 4 hours of continuous sleep can have such a dramatic effect on my energy level. On the agenda for today was reintroducing the neupogen shots into my treatment. You may recall that after the mobilization process I took neupogen shots to stimulate my stem cells into the blood stream. This is essentially what will happen now. The way I understand it is that my body has been knocked down by all the chemo, and the body is no longer producing cells. This round of neupogen shots are used to, once again, stimulate stem cell growth. Again, this is my understanding, that as the stem cells grow and burst into the bloodstream they will develop into the type of cells the body needs. Therefore, it is believed that the body will be able produce new cells in a healthy environment creating a healthy immune system.

Over the past year my health had steadily declined to the point that I could not take a single step with the assistance of a person or walker. I had to be helped in and out of a chair. I could not roll over in bed. I am not telling you all this to feel sorry for me. I am telling you this so that you can truly see the results of my stem cell procedure.

When I was accepted into the stem cell program at Northwestern I simply had a goal to be able to walk with a cane, drive, and be medicine free. I was afraid that I would not have been able to handle a major letdown if this procedure did not work. Now progressing through this procedure it is clear that I had set my goals too low.

Below are some pictures taken to illustrate some of the things I am now able to do.

Photo: Look at how far he can lift his leg up today!
Leg lifts in bed


Walking in the hall with walker


Sitting Criss-Cross


Lounging in chair.  Can now lift legs to reposition himself as well as push the legs down on the recliner with his legs.



On another note, please say a prayer in the morning for my friend Ben and his wife Vineetha.  Ben gets his transplant at 10:00 a.m. Central Time (11:00 Eastern Time)  We're with you all the way, Ben!








Saturday, July 20, 2013

Day +4 Sleepy Saturday

July 20, 2013:

Today my blood counts continue to drop and so does my energy level. I have catnapped on and off while enjoying short bursts of energy. From what I can gather this feeling can be similar to that of a person who has mono. Your body is so metabolically deprived that it just needs to rest. I believe that  at this point during the transplant process  I am going to have to dig deep and rely on mental toughness.

Throughout today as I tried to maintain this mental toughness, I was reminded of the Jimmy Valvano "Don't Give Up, Don't Ever Give Up" speech that some of my friends had shared on Facebook recently.   This speech was made in 1993 which was shortly after my diagnosis of CIDP.  Although I heard it at the time, I did not really listen or understand his meaning.  I felt like I was already living this way since I was going through some of the hardest trials of my life at that point. Until yesterday, it had probably been 10 years since I had heard this famous speech. Watching him give that speech, made me realize how one powerful speech, one powerful message can have such a ripple effect on an entire country.   His selflessness showed through during that speech, knowing his life may not be saved, but knowing that through his example others would be.

This speech is so powerful in and of itself that I have linked it here for you all to watch first hand.  I hope that you do as Jimmy Valvano said, "Laugh, think and be moved to tears".



As Ann, Mom and I sat here reading the daily influx of cards that I received,  I focused on applying those three principles of Laugh, Think and Be Moved to Tears.  Reading those cards, thinking of the loved ones back home supporting this journey,  the tears rolled freely down as I allowed myself to be moved to tears.  What a great feeling that was to allow myself time to laugh at the funny cards, think and reflect on the people that sent them, and be moved to tears by their heartfelt words.   I am reminded that mental toughness isn't always being "tough".

Friday, July 19, 2013

Day +3 Too Low to Count

July 19, 2013:


Today, my white cell count is now officially "too low to count." In the days following my stem cell transplant I have been anxiously awaiting my blood counts to drop. The sooner they drop; the sooner they come up. The sooner they come up; the sooner I go home. You get the idea.

Other than being at a greater risk for infection, the plummeting blood counts are wreaking havoc on my energy level.  I have been advised, cautioned, and directed to listen to my body over the next couple of days. So, as I let out a sigh of submission, I vow to listen to my body. Even though I had planned to take both a morning and an afternoon walk and catch up with some of my friends in the hall; I will listen to my body and accomplish these tasks when it is time. The bad news for those around me is that while my body is resting my brain and mouth never stop moving.

This journey was started by the need to find some physical healing, but it has steamrolled into so much more. By coming to Chicago, I have had the opportunity to meet and connect with people from all over the world who are gathered here for one mission-Taking our life back. There is a woman from Australia who has MS that is about one day ahead of me. There is a man with MS from New York who has, as of today, been accepted into the transplant study. There is a man who lives in Chicago who has seen the success of this study and is hoping for a confirmed CIDP diagnosis so that he can begin his healing. Lastly, I cannot forget my hospital neighbor, Ben.



Ben is from outside of London and has suffered for about 10 years with this disease. He is running about one week behind me in the study. When I met him it felt like I was seeing a long lost relative. For Ben, I am not sure it was the same, but he did say that I was only the second CIDP patient he had ever met. Our stories are eerily similar in the fact that we both have beautiful wives and two daughters of similar age. Ben plodded along for years not being able to get the medicine he needed and having to wait over two years to see a neurologist. Like me, Ben was no longer willing to just sit idly by and let the disease take over his life.

Everyone has difficulties in their life. No one difficulty is more trivial than the next. What may be hard for me may be easy for you. These are all great statements and ones I have used to make excuses for myself. Chicago has allowed me the opportunity to make no more excuses. A spark has been lit in me to reach out and lift people up. I no longer am willing to hide my disease for fear of not fitting in. I write these words, not only for myself, but in the hope that one person may find comfort from my life.

Thursday, July 18, 2013

Day +2 Walking and Rolling




As I mentioned yesterday I wanted to share with you some of the improvement I am seeing first hand.  Up until now, Bryan only walked with a walker around our house and that was still difficult and scary to watch.  Now, he can walk longer distances and is way steadier on his feet.  His balance and coordination is terrific compared to what it was.  The first video is of Bryan walking in the hall today, July 18, 2013.  For those of you who have been familiar with Bryan's decline this past year, you will hopefully see this as improvement!


End of his walk today.  This video highlights his improved balance.

Wednesday, July 17, 2013

Day +1 The Healing Begins

Day +1  July 17, 2013

Today is Day +1, or one day post stem cell transplant.  This morning, Bryan woke up feeling very tired.  He described it as the "bug hit the windshield" feeling. Dr. Burt said that today it would be normal to feel like "you had been hit by a truck".  Bryan described his Day +1 morning as feeling "off".  He said that he felt exhausted, but didn't have the CIDP feeling of legs crawling or fingers tingling.  I am sure that those of you who have CIDP or other diseases with neuropathy can relate to these sensations. 

On Day +1, for those CIDP patients out there, you receive Rituxan.  Rituxan is a targeted form of chemo that attacks your B Cells.  Dr. Burt said that basically it attacks any last "bad" cells in your body to allow for your new stem cells.  To remind you, Rituxan's pre-meds are Benadryl, Tylenol and steroids.  In addition, he is taking antibiotics, anti-fungal and anti-viral medicines on a daily basis. 

I should also note that Bryan is near the neutropenic level.  His absolute neutrophils and white cells were 0.6.  When these blood counts get to 0.5 or lower, he will be considered "neutropenic".  This is also when you are at the greatest risk for infections.  Infection is Bryan's biggest enemy right now.  That is why when he woke up in the middle of the night with a low-grade fever it was a little scary.  We were quickly reassured that a low-grade fever was normal.  As long as it didn't get above 100.4 there was nothing to worry about. 

As the day went on, Bryan started to feel better and his fever eventually went down.  Once the Rituxan  had finished its 4 hour course, he and I went for a short walk.  Yesterday he walked 200 feet and today he was able to get about 70 feet.  We will take each day as it comes.  He is also doing his arm exercises with thera-band right now.  They have him doing strengthening exercises each day for both the upper and lower extremities. 

Bryan is starting to feel sensation again in his feet.  He said that during his walk today he felt the nubs on his hospital socks against his feet.  He also started to feel the coolness of the floor after his shower.  It is amazing how much has happened on his road to recovery in such a short amount of time.  I wish you could all see how much his balance has also improved.  Maybe tomorrow during his walk I will do some video taping to share with all of you.  There is no other explanation than this treatment is working.  Of course this treatment is through God's healing and knowledge that he gave to Dr. Burt and his research team.  

The Superman Movement



Wednesday, July 17, 2013

Yesterday after my stem cell transplant I was overwhelmed with the amount of people changing their profile pictures on Facebook to Superman in support of me.  As the red, gold and blue logo stared back at me, I feel it is only fitting to share with you the importance this symbol has to me. 

Like all young kids, I also admired super heroes.  My three favorite superheroes were Superman, Batman and Spiderman.  Life goes on and we begin to grow up and out of our childhood fantasies.  However, for me my diagnosis of CIDP reconnected me with Superman.  For those of you following our journey, you know that I was 12 when I was diagnosed.  Twelve is often a difficult time in a young man's life.  Often times while other kids were out running and playing, I was in a hospital room connected to IV's in an effort to strengthen my body.  It was during this time that I began to relate more to the Superman character.  The Clark Kent character, played by Christopher Reeve, was a shy, small-town boy who was hiding a secret nobody of this world could imagine.  For me, this little scenario would play out as a coping mechanism for me the rest of my life.

With remitting and relapsing CIDP it is equivalent in my mind to the alter-ego of Clark Kent and Superman.  Because Clark Kent had special powers he was unable to participate in activities that typical kids did because he felt like he had to hide these differences.  This is often how I got through my relapsing phase of CIDP.  During a relapse, I tended to seclude myself, keeping my CIDP from the world.  Then, when I was in remission, I felt like Superman-Faster than a speeding bullet, more powerful than a locomotive, able to leap tall buildings in a single bound.

As the influence of Superman continues with my stem cell journey, it seemed only fitting that the release of the Man of Steel occurred while my family and I were in Chicago.  Not only were scenes from this movie shot in Chicago, but it was also revealed that the "S" symbol stands for Hope. And, it is that Hope that has brought us here. 

Tuesday, July 16, 2013

Day 0- Immune System's Birthday

Today was the Big Day!  It was the moment we had all been waiting for.  The reinfusion of Bryan's stem cells that were harvested in June. These stem cells were cryogenically frozen from June 27 until now.  The gentleman brought them in and started unthawing them.



Then, Bryan's nurses today, Becky and Ellie, were here to start the process once they were given the okay.  There was a lady chaplain, named Jeanine, who came in to say a prayer with us and bless the stem cells.  She led us in a very nice prayer prior to the infusion.  It helped since Bryan, Pam and I were an emotional wreck. 




Bryan shared his story so many times with so many different people today that I am sure it stirred deep emotions in Pam as well.  She has been by his side throughout this entire time and has often times put her life on hold to make sure he was taken care of and receiving the best treatment out there.  I am sure that this was the day she had prayed for since he was diagnosed in 1992.  Yet, she allowed me to be right there by his side today as we all prayed together. Arms around each other.  I couldn't ask for a better mother-in-law. 












Bryan shared with Amy Morgan, Dr. Burt's nurse how much she meant to him and how positive she is each and every time she enters the room.


Then, Bryan's infusion started. It was around 10:05 a.m.  It was over within about 30-40 minutes.  That was that.  The nurses had mentioned that he may feel some tightening of his chest and a tickle in his throat.  His blood pressure and heart rate may go up.  These were all  normal reactions to the stem cell infusion, but they had ways to help with all of those reactions should they happen.  Bryan felt fine during the entire infusion.  He felt a slightly flushing in his ears and a light headache.  Nothing too serious and nothing requiring any medical intervention.  Overall, he felt great! 





Bryan's doctor, Dr. Burt, popped in at the end and Bryan was able to share with him how blessed he was to be here and benefit from Dr. Burt's research.  He wrote Dr. Burt a really nice thank you note.  Dr. Burt joked with him and said, "The bribe money is inside, right?"









I am personally thankful that everything has gone as well as it has.  I know that this journey is far from over and there will be good days mixed in with not so good days.   However, I know that without God's guidance we wouldn't be here today.  I also know that without our friends and loved ones praying for us, it would not have gone so well.  In fact, I know that there are complete strangers praying for us today and that is just overwhelming.  There were two other stem cell transplants on the floor today for autoimmune diseases.  We don't know their names or even their illnesses, but we were praying for them from a distance for those patients and their loved ones.   I received a card from my grandma Glenna today and she shared something very powerful with me.  She said, "Sometimes the most powerful prayers are the ones that you never hear."  That is so true.  We know that there were many prayers lifted up for us today that we did not hear.  However, we felt them.  There was an overwhelming calm and peace here with love while Bryan's transplant was going.



Thank you to my dear friend, Ashley for reminding me that "There is a God and He answers our prayers!" She also shared this verse from Psalm 100:5. "For The Lord is good; His mercy is everlasting, And His truth endures to all generations"


Oh yeah and we should say, "Go, Bryan! It's Your Birthday!"



Celebrate Life~! 






Monday, July 15, 2013

Day -1: ATG Only

June 15, 2013: Day -1

Now that the chemo phase is over, I woke up feeling really good today.  I will say that I was fortunate that during this process it was only mildly uncomfortable but very manageable.  Today I only had to be given the ATG, which is the rabbit protein that directly attacks my immune cells.  It is not chemotherapy and therefore it doesn't make me feel as nauseous.  Basically I don't even notice it being infused.  My counts are starting to drop, as they should, and will continue to drop over the next few days.  I am not considered neutropenic yet, as my absolute neutrophils are 2.2.  Neutropenia occurs when this blood count drops below 0.5.  When I am neutropenic it is very important for me to avoid infection.  Therefore I will be starting on an antibiotic tonight to prepare for the time when my counts drop. 

Over the past five days I have already made progress on the distance I can walk with my walker.  I started out at only walking 35 feet, then 70 feet and then today I walked a whopping 135 feet.  My goal before discharge is to make a complete lap around the floor.  My physical therapist is also noticing improvements and has been very excited about my progress in such a short time.  My nurse was also impressed that I could push the footrest of the reclining chair down with my legs.  This is something that I haven't been able to do in about a year.   The nursing staff gets very excited with me as we celebrate these little victories. 



As today comes to an end, I am preparing both physically and mentally for the big day tomorrow.  Tomorrow marks Day 0, also known as my new birthday.  The stem cells will be reunited with my body tomorrow around 10 a.m. Central Time.  I plan to have a prayer prior to the infusion of these baby cells that will develop into a new and healthy immune system.  Any additional prayers will also be welcome.   We plan to have a big celebration in the hospital room with pictures, cards, balloons and video cameras.  Too bad we couldn't get the juggling clown and the magician to join us! :) 

We plan to post on here tomorrow to let you all know how it goes.  For now, I am going to continue to rest and feel stronger as I await my transfusion. 



God's Unanswered Prayers

As I am sitting here watching Ann sleep and think about how blessed I am, I cannot help but thank God for his unanswered prayers. The past week has brought a lot of emotions to the surface. Some good and some not-so-good.

I know I have referenced in previous blogs "my dark days", but what you need to understand is that I was lost and I was scared. For over 20 years, I had been trying to live an illusion of health while suffering behind closed doors. Most of my family members were unaware of the impact of this disease had on my life. In their defense, I have the remitting/relapsing form of CIDP so there were long periods of time when things would appear normal.  Having this form of CIDP also took its toll on me because throughout my life I would get glimpses of "normalcy", whatever that really is. Then it was like my life would get ripped apart and it was back to square one. It appeared that every time I would take on more responsibility I ended up letting those around me down. With each let down I began to feel myself withdrawing more and more from family and friends.

Last year my world was spinning out of control. I felt that I had let down so many people: my family, my friends, my players, and my community. I was a shell of what I had been. I needed help in almost all capacities of daily care. As these feelings mounted, I would say a prayer at night. I would asked God to spare my family the pain of seeing me in this condition and if it would be his will I would silently pass in the night.

Since those nights of silent prayers of submission, God has shown me that I do not need to carry this burden. I have found more peace and comfort by relying on Him and sharing this with others so that they may find the comfort that surpasses understanding. THANK GOD FOR UNANSWERED PRAYERS.