History

Wednesday, June 12, 2013 3:11 PM CDT

Hello everyone.

I have just celebrated my 8th anniversary from my stem cell transplant and all continues to go well. I have not had any relapses, treatments or medications to take associated with CIDP since my transplant. I am still amazed at how often I am asked questions about CIDP and stem cell transplantation. That is why I continue to keep my site going because it still reaches people who felt like I did 8 years ago, hopeless. I still believe that the stem cell transplantation process is a miracle and that there is HOPE so please do not give up on HOPE. Remember: Hold On Pain Ends (HOPE). I wish all of you who read this with CIDP or without CIDP a good life, happy days and remember to create daily memories for yourself and for those whom you love. Talk to you all soon.

Side note: Kim and Joe from Mayo Clinic, please contact us at our e-mail listed on this site. We think of you often and we have not been able to locate your contact information. We would love to re-connect with you.

Sunday, April 1, 2012 8:25 AM CDT

Wow, can u believe it! Today is my 7th birthday! Time really flies! I am amazed every Spring that all living things begin to grow and show new life no matter how harsh the previous Winter was. I too am an example of how things can be so harsh and barren but yet new life and growth can prosper. Seven years ago today I had my stem cell transplant which changed my life forever. I am happy to report that I am still relatively symptom free (aside from some minor tingling in my extremities which the doctor said is normal) and living as normal of a life now as I did before CIDP struck me.

It is amazing and miraculous what God allows science and medicine to do to aid in the help, recovery and curing of others who struggle with all kinds of illnesses. I am still amazed as to how many people still reach out to me with interest on how to qualify/receive the stem cell transplant or just wanting CIDP education. Please keep the interest coming.

I knew (and hoped) one day these journal entries would become boring and not have alot of substance contained in them because I would have nothing else to report other than I am doing GREAT and that is the way I like it. Not much more to report other than 7 years ago my life was given back to me and I am thankful for this everyday.

Until next time....

God Bless,

Jennifer

Monday, November 14, 2011 10:51 AM CST

Hello Everyone.

Well as usual, No News is Good News and that is why I have not written in a while. I am still symptom, medication and treatment free and it has been well over 6 years since my transplant. By all regards life is FINALLY back to normal.

I continue to get numerous requests for information on how to start the stem cell process and I am always happy to be involved in that process so please keep asking me questions and contacting me.

I am looking forward to the Holiday Season and wish all of you the best. Thank you for your continued support and well wishes.

Happy Thanksgiving and Merry Christmas!

Jennifer

Tuesday, February 22, 2011 7:12 PM CST

Hello everyone. I am sorry that it has been a while since a new journal entry but like they say, no news is good news.

I have been doing extremely well. I continue to be free from treatments and medication and my symptoms are minimal. I typically have some minor tingling in my feet upon waking but that is it.

As I look forward to celebrating my 6 years (Wow, time flies) post transplant on April 1, 2011 I continue to reflect back on how horrible things were for me mentally and physically and each day I remain greatful to God that this transplant saved my life and gave me my life back.

One thing that I am still suprised about is how often I am still contacted regarding stem cell information requests and curiosity about how I am doing. Just so you all know, I love communicating with all of you and helping others learn about how their lives can change through the stem cell process.

As Spring begins to dawn this year I hope all of you can cherish your health, your loved ones and the HOPE that medicine and God can bring to us through others.

I will give another update in a few months but until then I wish you all the best...

God Bless!

Jennifer

Sunday, February 21, 2010 8:51 PM CST

Hello Everyone,

As I approach my 5 year anniversary of my stem cell transplant I am thankful to God that I am experiencing wonderful health and the feeling of being free of CIDP. I will have a more in depth update in a few weeks but for now check out the links below regarding my 5 year stem cell transplant anniversary and the articles that have been written about it.

Talk to you in a few weeks.

God Bless!

Jennifer

Newspaper article:
http://www.suburbanchicagonews.com/heraldnews/home/2045584,4_1_JO13_PMIRACLE_S1-100213.article

CBS 2 Chicago Newscast:

http://cbs2chicago.com/video/?id=12143@wbbm.dayport.com

Thursday, June 12, 2008 2:14 PM CDT

Hi everyone,

I know this update has been long overdue. I've just been busy living life. Well, I have passed my three year anniversary in April. I am doing great! My three year follow up was good. I am officially in remission from CIDP, because in February I was able to stop all treatment for CIDP, and have no symptoms at this time. The only medication I am on now is for migraines, which is not related to anything that I went through. My nerve conduction was good, my reflexes were present, although minimal, and my labwork was normal. God is so good!

I also had a Pulmonary Function test done as a routine test. That showed some abnormalities. I have had some trouble breathing at times, with wheezing, cough, shortness of breath, etc. It may just be my asthma, or the effects of the strong chemo I received, or also from my CIDP. We aren't sure at this time. The test said it was likely from neuromuscular defect, which would be attributed to the CIDP. It does seem to improve with inhalers though.

Since I've last written, I've received a copy of the article written by my transplant physician that was published in the Journal of Medicine on my case. The history that I made is now official. It was nice, because my husband had everyone at Northwestern Hospital who took care of me sign it, including my doctors. I plan on framing it. History has now repeated with other patients, since my transplant. There have been a few others who have gone through the stem cell transplant for CIDP at Northwestern in the past year. At last report they are all doing well too. The stem cell transplant certainly looks to be a promising treatment for CIDP, as well as other autoimmune diseases.

I continue to enjoy life free of hospitalizations, sickness, treatments, etc. My kids are growing up fast, they are now 10 and 13. Summer vacation has started, so we are keeping very busy. Rick, my husband and author of many of these journal updates, is graduating with his Masters Degree in Counseling this month. Throughout my whole illness and transplant he was attending school full time and working full time. Now he is finally done! We are so proud of him. He was able to succeed throughout and despite these difficult circumstances.

Thank you to all who continue to visit this website. I will try to be more faithful in updating it, but more than likely "no news is good news."

God Bless, Jennifer

Saturday, September 29, 2007 10:24 PM CDT

Hi everyone,

I know it's been too long since I have updated this site. Like they say "no news is good news." I guess I can be thankful for how busy my life has become which keeps me away from things like this. It's a sign that I am doing well, living life with my family.

It's hard to believe it's been 2 1/2 years since I went through the SCT. Sometimes I think back to what I went through both prior to and during the stem cell transplant. My life has changed in so many ways from that time. I no longer need plasmapheresis or IVIG. On occasions I still experience some symptoms of CIDP, like fatigue, mild weakness, numbness and tingling, etc. but it's nothing like it was before. I have avoided the hospital for more than 2 years now!!! What a blessing in my life. I have been able to experience life again separate from CIDP.

I have had many follow up appointments at Northwestern Hospital. The doctors are very pleased with my progress. My NCT's are essentially normal, as well as my exam. I am in the process of weaning down and hopefully off my immunosuppressant medication (Cellcept). The past attempts to do this had failed, but we've been slowly weaning down on the medication since April (my two year anniversary). It seems like a month or so after each decrease my symptoms worsen for awhile, but then seems to stabilize enough that I have been able to decrease every 2 months.

I am thankful for the progress I have made and the help that I have been able to give to others. I am happy to say that I am no longer the only one to have gone through this procedure for CIDP at Northwestern. This seems to be a hopeful treatment for CIDP as well as other autoimmune diseases.

It's good that I have been doing so well, because now I have had to reverse roles and be my husband's caretaker. He had an injury to his ACL and PCL in his knee back in July at his work. So I have been the one to take him to his doctor appointments and Physical Therapy sessions, since he isn't able to drive. I guess he deserves the same quality care that he gave me for so long. It's time for me to return the favor.

I have been keeping busy with Rick and the girls. I have been able to get involved in the girl's schools and cheerleading team. I also decided to make a change in careers for the time being. I decided that nursing might not be the best choice for me at this point in my life, and decided to get my realtor's license. I am excited for the new opportunity for me and the ability to return to work in a small capacity.

I hope you are all doing well. Thank you for all your support and for your continued interest in my recovery. I welcome anyone to contact me regarding CIDP. I will be pleased to help in any way I can. I appreciate the words that people leave on my site, but the best way to speak with me is to contact my regular email account where I check regularly.

Take care and God bless!

Jennifer

Wednesday, January 17, 2007 11:41 PM CST

Hi everyone,

I hope everyone had a great Christmas and New Years. I know I enjoyed it fully with no medical issues to keep me away. I know this update is long overdue. Many people have been inquiring about an update. I'm pleased to tell you that in this situation no news was good news for the most part.

The year 2006 went without much drama. I've learned to appreciate the "boring" times. I've managed to stay out of the hospital for the entire year. This is the first time that has happened since I was diagnosed with CIDP, back in 2002. Other than a few routine checkups and some additional testing, I've lessened my dependence on the healthcare system. I can't say that I miss it.

Other than a few bumps in the road, this past year has gone well. I've made great progress. Life is back to normal. It's hard to believe that I was just beginning the process this time two years ago. In fact, two years ago this Friday the 19th (my birthday) I received a call that my insurance company would cover the stem cell transplant. I remember thinking "What a great birthday present!" That's when it all began.

What a difference it had made in my life! It was a rough road, but I'm stronger in the end, both physically, emotionally and spiritually. I have not needed plasmapheresis since May 2005! Quite a difference from the one to two times a week I received before the stem cell transplant. I still do require an immunosuppressant drug, Cellcept. We began another attempt to wean off the medication in September. Shortly after that, I began to experience some CIDP symptoms, namely numbness/tingling and some weakness, So that has been placed on hold for the time being. My symptoms leveled off, and soon I became strong again. We will try again later, and probably go even slower this time.

I experienced a recent setback. My AV graft in my left arm that was used for my plasmapheresis recently developed a blood clot, and now the whole graft is thrombosed or clotted. I had an ultrasound done and there is no blood flow through it. That's a risk you have with these types of accesses. Thankfully I don't need it at this time, and God willing, because of the transplant, I will never need it again. I will be seeing the cardiovascular surgeon later this month to determine what, if anything, can be done to correct this problem. I know that it has already been told to me that they would like to avoid having to remove it because of the high risk of performing such a surgery. There could be a high potential of dislodging those clots and causing a pulmonary embolism, among other problems. From what I understand, they would only remove it if it becomes a real problem, like becoming infected.

As far as the transplant goes, my next visit will be in April, for my two year anniversary. At that time another nerve conduction test will be done to check if my nerves have improved, along with bloodwork and doctor visits. As it stands, I still am the only one to have gone through the stem cell transplant for CIDP, although two people have been in contact with me who anticipate going through the same process very soon. I hope this proves to be a promising treatment to those struggling with CIDP, as well as many other autoimmune diseases. I know it has given me great hope that I didn't have before, and a new opportunity at life.

Thanks for all of your continued care and concern. It's still nice to see those who continue to check in, and also the new people that contact me so often. I will try to be better at giving more frequent updates.

I hope 2007 is a year of good health and happiness for all my friends and family.

Love, Jen

Wednesday, May 3, 2006 11:47 AM CDT

Hi everyone,

It has been a long time since I've written an update. I have passed my one year anniversary of my stem cell transplant. What a difference a year makes! I am doing really well over all. As I wrote before, I continue on high doses of immunosuppessive drugs to keep the CIDP away. I can't, at least at this time, be without it. Because of this high dose I have had a few bouts of illnesses which required additional antibiotics, which I just completed recently. First I had a terrible congested cough, then a cold, and finally I developed a pretty bad sinus infection. I had two rounds of this over the past few months. I just couldn't seem to get over it. That's what happens when you have only 50-60 percent immune function from the transplant and then take immunosuppressive drugs to suppress the immune system you do have. It seems now that I have gotten over the hump though. But in order to get over it, both times I had to stop my Cellcept(the drug to control my CIDP). That made me a little worried that my CIDP symptoms would return. The second time I even needed to be off of it for 10 days. But good news is I tolerated that pretty well. I just had, and continue to have numbness and tingling at times, but my strength has continued to improve. To help it along I have once again begun strength training and walking 30 minutes daily. I take my 2 dogs along for the walks. I figure we can all benefit from a little exercise.

I hope you are all enjoying the beautiful spring. I have such a new appreciation to see all the new growth that occurs at this time of year. Last year I missed all this because I was in the hospital. I remember coming home a year ago and feeling like everything was brand new both outdoors and in.

It was a year ago yesterday that I had my last plasmapheresis. I had to be readmitted to the hospital after being home only a few days because I had developed an infection and I was in a horrible flair of my CIDP. So I feel like this year I can truly enjoy the spring and summer. To spend time with Rick and my girls without worrying about treatments or hospitalization is a true blessing to me and a miracle of healing.

Thank you to all who have supported me and my family this past year with cards, emails, visits and most of all your prayers. Please pray for my continued health that one day I can be in complete remission and off all treatment for CIDP. I pray that I can offer hope to all those who are struggling with this disease, as I have been given a new hope.

That's all for now. Remember no news is usually good news. I will write again.

Thanks, Jennifer

Wednesday, February 22, 2006 7:19 PM CST

Hi family and friends,

I know alot of you have been asking for an update, so here it is. Since the last time I wrote I have been back to Northwestern for some tests and doctor visits. As I wrote last time, I had a period where I felt like I was weakening once again, so we have increased the immunosuppressive therapy even more. I am now on Cellcept 3 grams per day, up from 2 gms per day. This is the highest dose I have ever been on and the absolute highest I can go up to. If that does not work their would be a plan B which would to try a newer type of drug, Rituxin. This is not an FDA approved drug for CIDP so insurance would not likely cover it. At $5000 per treatment a series of four(which is the amount I would be prescribed by IV) would be quite an expense. But it appears that I won't have to worry about that at this time because since the increase in Cellcept to 3 grams per day I have improved! It feels great once again to be getting my strength back. I can do stairs easily again and my numbness/tingling seems better as well. Yes, it is unfortunate to still have to be on treatment for CIDP, but I am still way better off than prior to the transplant.

The plan is to continue on this dosage of immunosuppressive therapy, if it's effective for at least 6 months then maybe try again to wean down or even off the drug completely if I can tolerate it. This time we would go more gradually hopefully bringing the disease into remission. Time will tell.

I've had an EMG done again which had similar results to the one done in October for my 6 month appointment, although the nerve conduction velocity was a little more slowed, which coincides with my weakness at that time. Once again it is better than prior to the transplant. That's more good news.

The doctor also wants to try weaning me off the blood pressure medicine I've been taking since the transplant because my blood pressure readings have been good. I'm now taking half of a pill and my blood pressure seems to be increasing. Rick takes my blood pressure every night. I'm supposed to go off of it completely in a few days, so we'll see. The fact my mom and my sister both have hypertension might indicate I'll need to be on something too, I was just thrown into it a little early from the "trauma" my body went through. I was told by my neurologist that since I am getting stronger I can begin to exercise again, so that should help too.

It's hard to believe I'm approaching my 1 year "transplant birthday." Next week will be a year from my first chemo treatment. I'm so grateful for where I'm at today and so thankful for the loving support of such great family and friends. Thank you all so much! I'd like you to celebrate with me at my one year anniversary, April 1st. More details will follow later. I feel like I need to celebrate with all those who helped me through this difficult time,it was because of all your prayers, love, concern and help that I was able to get through it all.

Thanks again. Talk to you all soon.

Jennifer

Saturday, January 21, 2006 3:05 PM CST

Hi everyone,

It's Jen for once. I thought I'd finally update you and give Rick a break. I know a lot of you have been calling or looking for an update on our appointment to Northwestern this past Monday. I'm sorry it's taken us so long, but it was a busy week with our birthdays (Rick turned 35 on Wednesday and I turned 34 on Thursday.) I know, we're getting old. I just call it more experienced.

Anyways...here's what you all have been waiting for. My transplant doctor isn't "convinced" that I'm experiencing a reoccurence of CIDP, but also isn't "convinced" that I'm not. What he explained is that during the transplant process and the high dose chemotherapy I received, they were only able to "safely" kill off 80 percent of my immune cells. That left me with 20 percent of the old diseased immune cells. The hope was that the new good stem cells would overpower the bad because there was so many more of them. (8 million to be exact) As an additional safety measure I was placed on my previous immunosuppressive drug Cellcept, so it would continue to suppress the diseased cells. Back in October I decreased my dosage of this drug in half. It was approximately one month or so after that when I began to once again experience the symptoms of CIDP. (mostly numbness and tingling, heaviness in my arms at times and occasional muscle twitching.) At that point I wasn't experiencing weakness. My doctor feels maybe we were too optimistic and tried this too soon.

So now the plan is to go back to the dosage I was taking before, which is the same dosage I was taking prior to the transplant. I will continue this for at least 6 more months and then maybe if my symptoms have once again resolved, begin to taper off, but this time even slower. In the meantime I need to see the neurologist at Northwestern again and have another EMG done to see if my nerve conduction has worsened since October. I have these appointments already scheduled for February 10th and 22nd. My doctor says I should see results of this increase in dosage within 2 to 3 weeks. If not or if things worsen in the meantime I am to call him back. This is the point I am at now, because since my appointment on Monday I have been getting worse. I am now starting to notice weakness, mostly it seems in my legs. I notice changes in my walking, like feeling like I drag my right leg. I have more difficulty with stairs too. I have been noticing even more numbness/ tingling, feelings like my skin is crawling, muscle twitching, fatigue, and feeling like my arms and legs are blocks of wood. I'm just hoping the medicine kicks in soon as the next step would be IVIG if I continue to weaken. I don't want to go back to that or my "beloved" plasmapheresis. We'll just have to wait and see and continue to pray for healing.

My doctor estimates that my immune system is around 40 to 50 percent, but now that I am increasing my immunosuppressive therapy I will be at more risk for infections again. It will take even longer now to reach my normal immune function, so I need to continue to avoid large crowds and of course anyone who is sick. It will be difficult for me to do as I have begun to take back a lot of my freedom, and probably at times too much. I have been fortunate to avoid any illness since May, but I plan to be once again more cautious as I don't want any additional setbacks.

I hope this New Year finds you all blessed with good health and happiness. Thank you for all your continued prayers and cards and calls. It is very encouraging, despite this discouraging time. I would love any phone calls or "healthy" visits. It helps me keep my sanity, along with giving me good company.

Talk to you all soon.

Love, Jen

Friday, January 13, 2006 8:34 PM CST

HAPPY NEW YEAR TO ALL!

Hello everyone.

Myself, Jennifer and "The Girls" had a wonderful and gracious Christmas and New Year. We spent alot of time with family. Jennifer cooked 2 full course Christmas meals at our home on 2 different occasions. That is one thing about Jennifer since her transplant, she does everything that she is allowed to do and she DOES IT BIG!

I have to be honest, this year was especially precious to me and "the girls" because we had "Our Normal Jennifer/Mommy" back for once. No central lines hanging out of her chest, no leaving get togethers early to change central line dressings, no weakness, wheelchairs or any help to her of any kind. I asked God for that gift to be given to us a long time ago and He granted it to us. Jennifer does not even know this but I would just sit and watch her on Christmas getting along on her own without any major worries and it truely touched me. Life can be so humbling and can change in an instant for better or worse.

In the last several weeks Jennifer has begun to hit a roadblock in the transplant process. She has had numbness, tingling, heaviness and intermittent muscle twitching/spasms mainly in her upper extremities. Once again the doctors are optimistic and do not think this is of (major) concern. As you may remember when Jen's immune system was destroyed by chemotherapy all of the bad cells were not able to be destroyed. So those bad cells may be trying to push their weight around since Jen has begun to decrease the Cellcept. We were not due to see Dr. Oyama until April 2006 but he wants to see Jennifer on Monday January 16th, 2006. At that time he will evaluate Jen's immune system, neurological system and drug therapy regimine. We will make whatever adjustments that Dr. Oyama suggests and hopefully those adjustments will have positive results.

Jennifer is having a difficult time with this situation. She is fearful that the CIDP has not left, she is upset that she is not going to get the freedom that she expected by the first of the year such as attending church etc. Overall her spirits are good but it has been a long 3 1/2 years and we are hoping so badly that this is not the beginning of another rough year.

Please pray for Jennifer and our girls as well. They are nervous and concerned also. Pray for strength, continued healing and growth of her immune system (it is yet only 35 percent)and peace of mind.

We still receive alot of support and Jennifer and I cannot thank all of you enough. Thank you for being there during one of the most difficult times of our lives.

Jennifer and I hope this new year of 2006 is treating you well thus far. Jennifer and I hope that 2006 is prosperous, healthy and happy for all of you.

With Love,

Rick

Thursday, December 22, 2005 11:05 AM CST

Merry Christmas and Happy Holidays to Everyone!

Not a whole lot has changed since the last update. We have been very busy with Christmas festivities and Jen has become a Christmas cookie baking fanatic. I do not mind though. :)

Jen has been experiencing some heaviness, tingling and numbness in her extremities during the last few weeks. Sometimes things are very heavy for her to lift and sometimes she has minor trouble walking. The doctors say that this is nothing to be concerned about, they kind of expected it, Easy for them to say when they are not the ones who went through chemotherapy and a stem cell transplant and then physical difficulties afterwards. Jen still has a good attitude though she becomes scared once in a while. The explanation for the symptoms is that Jen's immune-system is developing everyday into a more mature immune-system. Sometimes those little stem cells can get over zealous on developing or tired and just take a rest. Jen's immune-system is approximately 35eveloped now.

Jen went out a few weeks ago with her good friend for dinner and some mild Christmas shopping. It was the first time Jen had been out with someone other than us (the family) in close to a year. It felt very strange to her but it also felt very good. Jen is amazed at how much your general surroundings change when you do not go out into them everyday. There are things around our community that were farm fields when Jen went through the stem cell transplant process and now they are full housing developments. Jen is amazed at how fast time can move and how precious time is.

A lady recently found Jen via the internet who also has CIDP. What is amazing is that she lives less than 1 mile from us. Jen and her have become good friends and talk often. The first things they said to each other was that they felt like they were the only one's in this world with thier crazy disease. Small world isn't it!

Jen's hopes of getting off of the immunosuppressants completely by the first of the year does not look like a possibility with the symptoms she is experiencing now. This is somewhat of a setback because we do not want to get dependent on the immunosuppressants, we want to get off of them as soon as possible. We are used to setbacks and difficult news but we are getting tired of it.

Well I will sign off now. We wish all of you and your families a safe, happy, prosperous and healthy Christmas and New Year!

For those of you with CIDP that we are in contact with and for those of you with CIDP who check this website frequently or those of you who are or have been through a stem cell transplant Jennifer wanted me to make sure you know that she is praying for each and everyone of you and hopes that you will have the best and most healthy year of your life in 2006.

P.S. For all of you who inquire about frequent photos of Jen, I have 2 news photos posted.

Merry Christmas,

Rick...

Wednesday, November 16, 2005 8:39 AM CST

Hello everyone...

I sincerely apologize for the long delay for a new update. I realize from all the e-mails and contacts that we get that some of you religiously look forward to hearing of Jen's progress.

The reason for the long update delay is that I had bacterial pneumonia and a severe sinusitis that took the wind out of my sails for about 3 weeks. This was a true test of Jen's immune system. For her to be around me while I was so sick and that she did not get sick (at all) is a true statement of how well her drugs are working and how well her NEW immune system is developing, even though it is only 35�veloped.

Overall Jen is doing well. She has feelings of numbness, tingling, heaviness and muscle twitching in her arms once in a while but that is it. When she experiences these symptoms it is not severe, it is just a sensation. According to Dr. Oyama there is no reason to become alarmed over this.

Dr. Oyama has decreased Jen's immunosuppressant drugs and he hopes to have her off it completely by the first of the year.

Jen's blood pressure has stabilized. She has been weaned down to one medication(Toprol). The stabilization of her blood pressure with the aid of one medication instead of the original four shows that her body is slowly adapting to the trauma it was put through from the transplant.

One other bit of information. Jen's menopause process has reversed. You all may remember that Jen was going through menopause and that is not uncommon for a stem cell transplant patient. Well, 2 months ago she started her period again. I put this personal information in here (with Jen's permission) for all of the women that are following Jen's progress and contemplating a stem cell transplant.

Jen's hair is growing back at a fast rate. In previous pictures on this website you may remember that Jen had long, thick, blonde hair. Well now I have the best of both world's. Jen is a brunette! Jen's hair has come back brown and curly. She looks so cute!

Jen has changed her life significantly since the transplant. She eats extremely healthy and exercises aggressively now. Jen lifts weights 3 times per week, she (briskly) walks and sometimes jogs about 10 miles per week and she does pilates 3 times per week. This makes Jen feel stronger, more flexible, more positive and just plain good. Sometimes I watch her do her exercises and it makes me emotional because for the last 3 years prior to the transplant she could hardly hold or lift a gallon of milk. The girls love "Mom's" new strength as well because Jen can pick them up and hold them once again.

Jen is beginning to have a little more (public) freedom as well. We are still very cautious about where we go and when we go as well as the cleanliness factor of where we go but the extra freedom feels good for all of us. We are experiencing some emotional issues about Thanksgiving and Christmas (family) get togethers. Being around large groups of people with small children in a closed environment (house) is a recipe for disaster. Jen is very torn about what to do.

Well, I will wrap it up here. Once again, thank you so much for all the support. Jen cherishes every bit of support and thanks you from the bottom of her heart. I also uploaded new picture on this site, take a look at em'.

Sincerely,

Rick...

Wednesday, October 5, 2005 7:23 PM CDT

Hello!

What a day!

Well all we can say is that God is Good! Jen did remarkably well with all of her appointments today. She is very tired but she made it through with flying colors.

Where do I start? Jen's EMG/nerve conduction test was greatly improved since her last test. This is excellent because it means that her nerves are re-generating and allowing the electricity to get to her organs and muscles.

Jen's physical test with Dr. Suffit, her primary neurologist went remarkably well also. The last time he saw Jen he kept telling her to give him a challenge. Jen was so easy to move around and had virtually no strength to resist him. Today Jen's strength was so good that the doctor broke a sweat during her resistence of his tests.

Jen's blood that was drawn resulted in 10-15 tubes once again. Jen also had another CIDP study panel drawn so now there have been 2 CIDP study panels done in the entire world and guess who they both belong to, you guessed it. :)

The appointment with Dr. Oyama went very well. He was AMAZED at Jen's progress, however, he also made sure we knew that he thought she would turn out like this. Dr. Oyama stated Jen's immunse system is about 350ight now so she is now serious and not critical. We still have to continue with all the precautions for Jen but time is on our side now. Dr. Oyama would like Jen to decrease her Cellcept from 2000mgs per day to 1000mgs per day. The plan is for Jen to be off of cellcept in three months. Until that time Jen needs to remain on antibiotics and antiviral medications because cellcept is an immuno-suppressant drug and increases her risk of infection.

Dr. Oyama requested that we do not say Jen is in "remission." He does not believe she will be in "remission" until she is off of cellcept altogether and shows no signs of CIDP. Right now we will say Jen is in "partial-remission." After two years of being CIDP free Jen can say she is CURED!!!

After all the appointments we went to the 15th floor, transplant unit, our extended family! EVERYONE was so happy to see Jen and a few did not even recognize her because she had hair and she looked so healthy.

Jen's doctor and his nurse have begun to talk to Jen about getting her name out and advocating for stem cell transplants for auto-immune diseases as well as CIDP. There may be some medical confrences for Jen to speak at in her future as well as more media attention. Please pray that God leads Jen in the right direction in helping others that can truely benefit from autologous stem cell transplants.

Overall it was a good day that was filled with good news for once. God has truely blessed us and has performed a true miracle right before all of our eyes.

Blessings,

Rick...

Sunday, October 2, 2005 7:10 PM CDT

Hi everyone.

Just a short message this time.

Jen is doing well and still recovering as well as expected. I just wanted to let all of you know that Jen had her 6 month post-transplant anniversary on October 1st, 2005. Yes, it has been that long already.

We are going to Northwestern on Wednesday October 5th, 2005 for Jen's 6 month check up. The day will be long, tiresome, (sometimes) physically painful and very emotionally trying. This should be the day that we find out Jen's long term prognosis and whether we can officially use the term of "REMISSION."

Please keep Jen, me and our whole family in your prayers for that day. I will update ASAP after the appointment and hopefully have some new pictures also.

With Love,

Rick...

Sunday, September 11, 2005 12:39 AM CDT

Hello.

It has been several weeks since an update and I am pleased to announce that there is not a whole lot to update you on.

Jen is surviving her seclusion very well. She is accomplishing alot of things that she has been wanting to do for a while, such as organizing drawers, cabinets and photo albums.

Jen has been given some freedom to go out a couple of times a week to a restaurant, movie or a small shopping store. We have to wipe everything down with anti-bacterial wipes, go at a low populated time and request to sit as far away from others as possible but it is worth the inconvenience to us. Just last night we went to Chicago for the first time that was not for a doctor appointment. We went to the restaurant that I ate at quite alot while Jen was in Northwestern. She got to meet the waitress and others that got to know me so well. It just amazes us how Jen's (our) story can affect others in a way that you would not think of. Anyway we had a GREAT time as did the girls.

It is so strange to Jen to see things like Chicago or even our home town because things change so quickly and she has not been out and about frequently for several months now. The things that I (we) take for granted seeing, smelling, tasting, touching on a regular basis are all fresh and new to Jen and it is a humbling feeling to me.

The other day Jen and I played catch with baseball mitts and balls in our backyard. I had a lump in my throat and Jen was very emotional because for the last three years Jen could not even hold a baseball let alone whip one across the backyard with ease.

Overall "Our Jen" (as so many call her now) is doing well. Her blood pressure is still an issue as is her menopause but we are doing all that we can for those issues right now. Some of Jen's lab values are off as well but we are figuring out a strategy to combat those problems.

I hope to write again soon but if not please remember that no news is good news. Please be in strong prayer and thought for Jen as she goes to Northwestern for her long awaited six month post-transplant check-up and testing. We will find out some very relevant things at this appointmemt and I will definately write back then to let you know how it went.

Until later,

Rick...

Thursday, August 18, 2005 8:58 AM CDT

Hello Everyone.

Well the summer is quickly going away and when we reflect back on what happend this past spring and summer we are amazed as to what we went through mentally as a family and what Jen went through mentally and physically. We cannot believe that Jen's 6 month post-transplant appointment is only 6 weeks away. Where does the time go!

Jen has been doing pretty well. Her high blood presure is still an issue and at this point we really do not know how to treat it. We just take it day by day right now and pray that it does not get high enough to put Jen in the hospital. Jen deals (sometimes on a daily basis) with frequent headaches, agitation and the "feeling" of a racing heart due to the blood pressure but it is tollerable for now.

We ask for prayers of comfort for Jen because she appears to be in the process of menapause. This is not uncommon for a stem cell transplant recipient. Jen has frequent hot and cold flashes, her cycles have ceased and she has frequent depressive moods. To most (in their older years)this is just a way of life but Jen feels as if she is being robbed of her feminism. We also have to be very concerned (and treat in the very near future) for cardiovascular disease and osteoporosis. Because Jen is going through "the change" she is at HIGH risk for developing these diseases due to the protective hormones being absent in her system.

Jen's labwork is EXCELLENT! Her white blood cell count is normal as well as her liver enzymes and her hemoglobin. Prior to the transplant Jen was always anemic and at times needed blood transfusions, now she has a normal hemoglobin and hematocrit level.

Overall Jen is doing well. Her disease symptoms are still TOTALLY absent and we are just dealing with other side effect issues. Jen has even been given the blessing of going out 1-2 times per week to dinner or a movie at a very low populated time. SHE LOVES IT! It is amazing how much we take for granted when we are not held captive in our own homes for months at a time. We still have to really think and prepare just to go out to dinner. Our general questions to each other prior to leaving are; Doyou have the anti-bacterial wipes? (to wipe down the table and booth). Do you have the silverware? (we have to take, clean and use our own silverware). Do you have a mask? (just in case we run into some environmental issues). Do you have Dr. Oyama's pager number with you? (we always do, just in case), and the list goes on. But we enjoy every minute we are out together, it is all worth it.

The girls go back to school next Wednesday and our "nanny" leaves today, so we are a little sad :( We have grown very attached to Danielle and the girls are going to have a hard time dealing with her leaving us. God has blessed us so richly during this difficult time.

One last request. Please keep all of those who suffer from CIDP in your prayers. Jen gets contacted daily via e-mail and telephone from people who suffer from CIDP all over the country. We are amazed at the range of ages that this disease affects. We are in contact with people who are as young as 6 and as old as 86 with this disease. We have also lost a few CIDP "friends" to CIDP,so this disease is physically devastating and mentally taxing for all who go through it and are around it.

Well, all of you have a wonderful end to the summer and we will be in touch again soon. Also, check out the new updated photos that I just uploaded.

Blessings,

Rick...

Thursday, August 4, 2005 5:50 PM CDT

Hello everyone.

We have been getting many, many requests for another update on Jen. I apologize for the long breaks between updates but I do not want to bore you with minor details.

Jen is doing well for the most part. She went to see the doctor this past Monday and all is well in the reflexes and strength department. Most of Jen's labwork is within normal ranges but her white blood cell count is low for some unknown reason.

As you all know from the last update Jen was having some severe swelling/edema in her legs, ankles, feet, face and arms. This was attributed to one of her medications that she was taking to keep her blood pressure under control. The medication was Norvasc. Jen was taken off of Norvasc and her swelling/edema has subsided but her blood pressure is uncontrollably on the rise again. We cannot win! Jen was also taken off of diflucan because her liver enzymes were elevated.

Jen is looking forward to her six month check up with the neurologist. This will be around the first week of October. We will really hear about the good or bad news of her disease then.

Other than the summer passing by very quickly all is well here. The girls are having a busy and fun filled summer and Danielle our "nanny" is working out wonderfully.

Talk to you all again soon.

Rick...

Friday, July 22, 2005 3:30 PM CDT

Hello everyone.

Well the summer is progressing very rapidly over here and the heat is beating us up pretty good but we are handling it well.

Jen is not doing as well as I had hoped to report this week. She is experiencing tremendous swelling, primarily in her feet, ankles and legs. We are not sure as to why this is happening but she has been weaned down and soon to be off the steroids. Jen has also been feeling pretty run down and tired lately, to the point of taking afternoon naps. This is totally out of the ordinary for her. She has been a bundle of energy since her last discharge from the hospital.

Overall the same drug regimine is still in place and Jen has no signs at all of her (former) disease. Jen's blood pressure is also still under control.

I know this is a short journal update but short and sweet is OK with me. Please pray that Jen's fatigue and swelling are "normal" setbacks and that there is not anything underlying waiting to rear its ugly head.

Happy Summer!

Rick...

Saturday, July 16, 2005 12:09 AM CDT

Friday, July 15, 2005 8:09 PM CDT

Hi there everybody.

Not alot to report as of the last few weeks.

Jen is doing exceptionally well and her lab values and blood pressure are doing just as well. Her hair is growing back in at a very fast rate and she looks so cute. It appears that the doctors were right about the hair growing in after having chemotherapy. Jen's "new" hair is very dark and beginning to become curly. She hates it but I tell her that's what hair straighteners and hair coloring is for, right!?!

Jen still has more physical strength and mental determination than I have at this point and she is using every bit of that to her advantage. It is so good to see her doing things that she has not been able to do in 3 years. She is truely a "new" person. All reflexes are good and strong and there is no sign of numbness, tingling or weakening strength. Full speed ahead! :)

The girls are keeping busy with the "nanny" and with us also. We have gone to the park to fish as a family one time last week and the girls really enjoyed being out with Mom again. Everytime I go out somewhere with Jen, even just for a few minutes, I am amazed how much we take for granted when we have our freedom. Jen's freedom has been taken away from her (temporarily) and when she can go out she lives it up to the fullest. All of us can learn many, many humbling lessons that Jen can teach us!

Hope everyone's summer is going well and safe and I will update again soon.

Rick...

Saturday, July 16, 2005 12:06 AM CDT

Hello everyone.

I do not know why the new journal update did not take to the update page. If you look under the journal history you can see the most recent update.

Rick...

Friday, July 15, 2005 8:09 PM CDT

Hi there everybody.

Not alot to report as of the last few weeks.

Jen is doing exceptionally well and her lab values and blood pressure are doing just as well. Her hair is growing back in at a very fast rate and she looks so cute. It appears that the doctors were right about the hair growing in after having chemotherapy. Jen's "new" hair is very dark and beginning to become curly. She hates it but I tell her that's what hair straighteners and hair coloring is for, right!?!

Jen still has more physical strength and mental determination than I have at this point and she is using every bit of that to her advantage. It is so good to see her doing things that she has not been able to do in 3 years. She is truely a "new" person. All reflexes are good and strong and there is no sign of numbness, tingling or weakening strength. Full speed ahead! :)

The girls are keeping busy with the "nanny" and with us also. We have gone to the park to fish as a family one time last week and the girls really enjoyed being out with Mom again. Everytime I go out somewhere with Jen, even just for a few minutes, I am amazed how much we take for granted when we have our freedom. Jen's freedom has been taken away from her (temporarily) and when she can go out she lives it up to the fullest. All of us can learn many, many humbling lessons that Jen can teach us!

Hope everyone's summer is going well and safe and I will update again soon.

Rick...

Friday, July 15, 2005 2:56 PM CDT

Friday, July 14, 2005 2:55 PM CDT

Hi there everybody.

Not alot to report as of the last few weeks.

Jen is doing exceptionally well and her lab values and blood pressure are doing just as well. Her hair is growing back in at a very fast rate and she looks so cute. It appears that the doctors were right about the hair growing in after having chemotherapy. Jen's "new" hair is very dark and beginning to become curly. She hates it but I tell her that's what hair straighteners and hair coloring is for, right!?!

Jen still has more physical strength and mental determination than I have at this point and she is using every bit of that to her advantage. It is so good to see her doing things that she has not been able to do in 3 years. She is truely a "new" person. All reflexes are good and strong and there is no sign of numbness, tingling or weakening strength. Full speed ahead! :)

The girls are keeping busy with the "nanny" and with us also. We have gone to the park to fish as a family one time last week and the girls really enjoyed being out with Mom again. Everytime I go out somewhere with Jen, even just for a few minutes, I am amazed how much we take for granted when we have our freedom. Jen's freedom has been taken away from her (temporarily) and when she can go out she lives it up to the fullest. All of us can learn many, many humbling lessons that Jen can teach us!

Hope everyone's summer is going well and safe and I will update again soon.

Rick...

Friday, July 14, 2005 2:55 PM CDT

Friday, July 15, 2005 2:53 PM CDT

Friday, July 15, 2005 2:51 PM CDT

Friday, July 15, 2005 2:39 PM CDT

Sunday, July 3, 2005 11:44 AM CDT

Happy 4th of July, Everyone!

Things have been progressing very well for Jennifer for the last few weeks. Jen is getting stronger by the day and there are no signs (AT ALL) of her (FORMER DISEASE) :) CIDP.

Jen has been doing alot of things to keep herself occupied. She has been spending alot of time watering her plants and flowers and being outdoors. This past week was difficult for her in that there were alot of ozone action days with high heat and humidity so she could not be outside.

Jen received the "OK" from Dr. Oyama to begin working out if she so desires. She has been lifting weights and doing crunches religiously since the appointment. It is amazing to watch her lift weights now. Three years ago when she was trying to lift weights she could not even do it. Jen has also received the "OK" to go out in public once in a while. She still cannot go to church or restaurants etc. but she has been to Target twice now. We have also been going to local firework events this past Friday, Saturday and Sunday. Jen wears a mask because of the chemicals in the fireworks but she is thrilled to be out. She has even been out once for about an hour ride with me on the bike. The little things we take for granted.

Overall things are going well here at the Osman's as compared to the last few years. It is such a nice change of pace and a true relief to have life back to more normal circumstances. The girls are doing well also. They are spending alot of time swimming and playing and "hanging out" with the "nanny", Danielle. She is working out so well.

There have been a few changes with this website. Our new e-mail address is rjosman@sbcglobal.net and I was FINALLY able to upload pictures to this website so please view them if you are able.

Please have a GREAT 4th of July and be safe. Also, please keep all of those with CIDP and other life threatening illnesses in your prayers. Jennifer and I have received 2 rounds of terrible news in the last few weeks about people that we have grown close to via e-mail and telephone conversations who have family members with CIDP and have very recently lost their battle. This is a truely life threatening disease and we need to help as many as we can to get the help and support that Jennifer was so fortunate to receive.

God Bless All of You!

Rick...

Wednesday, June 22, 2005 8:28 PM CDT

Hi everyone,

It's Jen writing today. I'm feeling really good, so I thought I'd write for once. I went to see my transplant doctor on Monday and everything checked out good. I had some bloodwork done which came back normal. Some adjustments were made on my medications. But overall my doctor was pleased with my progress. My blood pressure is now well controlled with the 3 medications I am taking. I will be weaned off the steroids within a few weeks. At that time they hope to be able to take me off at least one of the blood pressure meds. I don't need to follow up with the doctor until end of July unless problems arise. But we won't mention that, now will we? The doctor even gave me clearance to go to a store every now and then. I just need to have antibacterial wipes or lotion and a mask handy just in case. I didn't waste any time following that doctors order. I went to Target and Jewel for a little shopping excursion yesterday. It felt so weird to be out in public. But that is the extent of it for awhile since I am not even 3 months post transplant. I won't want to jeopardize my continued recovery.

Not much else to mention at this time. The girls are enjoying their summer with Danielle our "nanny" as the girls call her. They have gone to our local waterpark many times already, they have been to the zoo and just went to Great America yesterday. They have mentioned that they can't wait til next summer when I can go with them. I can't either.

My CIDP appears to be in remission at this point. I have no real signs of it and my strength is amazingly good. I even asked the doctor if I could start exercising and lifting weights. He said fine. It's hard for me to even believe that I even have the opportunity to do that, seeing as many times lifting my own arms was impossible. It's just such a blessing what God has done in my life.

Thanks again for all the prayers, meals, cards, calls, etc. I would welcome any healthy visitors. Just call first please.

Have a great day.

Love, Jen

Sunday, June 12, 2005 8:13 PM CDT

Hello Everyone!

Someone made the comment as to how quiet the website is since Jen's return home and that is so true. As they say, "no news is good news."

Things are progressing very well for us. Jen is getting stronger and stronger everyday and she is a whirlwind of energy. She wears me out just watching her. I have to keep an eye on her like I would for a little child because she would certainly over do it if she was not being watched. She is organizing closets, dressers, junk drawers, spices and she has turned into an internet power shopper. There seems to be something delivered to my front porch more than twice weekly. ;)

In all seriousness, Jen is doing marvelous! She is so strong and she has no sign of weakness, numbness, tingling or her FORMER disease of CIDP. Praise God! We still know how critical she is and how delicate she will need to be for the next 12-18 months. Her immune system is progressing ever so slowly.

Danielle, the nanny, has been a real blessing. She is part of our family. The girls love her and Jen and I have found a wonderful new addition that we can count on. I do not feel so overwhelmed now and I can breathe a little easier now.

Jen was able to attend church today and she did it from the comfort of her own living room. The church has been working very hard on establishing a live video feed from the church to our home so that Jen can see the service. Today was the first day for it and Jen loved it. During the service the pastor asked the congregation to say "HI JEN" on the count of three and we all did, it was very emotional for Jen.

The girls are doing well. Through all of this with Jen they both maintained "above grade level expectations" on their report cards. Meghan received all A's and Beth received all pluses or three's. We are so proud of them and their strength. They are enjoying the summer and the waterpark we have memberships at.

Life is so good and has returned to alot more of a normal status these days.

I countlessly thank you all again for all the support of meals, financial help, prayers and everything else that has been offered and provided to us. Thank You!

With Love and renewed strength in our hearts and minds,

Rick, Jen and The Girls

Friday, June 3, 2005 9:55 AM CDT

Hi everyone,

Well another week has passed and Jen continues to amaze the medical community as well as medicine itself.

On Wednesday we had a follow up visit with Jen's doctor. He is amazed and stunned as to how well Jen is doing. She is TOTALLY CIDP symptom free. No numbness, tingling, weakness, tremors, muscle fatigue or anything! She is truely a medical miracle. The only problem we are dealing with is her high blood pressure, but that is under control.
Jen will see her doctor again in three weeks for re-evaluation. Jen will continue with bloodwork every two weeks.

Jen is continuing to enjoy her yard, flowers and plants. She spends alot of time outside. We go for a ride around Plainfield a couple times a week but that still is not good enough, she still feels trapped in her own home/yard but she is handling it well.

We met with our live in nanny for the first time yesterday. She is very nice and the girls love her. She is a niece of a very close family friend. She will be with us Monday through Friday until the end of August when she has to return to college. I am looking forward to her being here so that some of the weight is taken off of me. It has been very tiring and trying these last few months for me to deal with everything, she will be a welcomed addition to our family.

Jen has a wonderful attitude about life. She has a new life to begin and she values and cherishes every minute of it. Not to preach again but ALL OF YOU, please cherish your life, family, friends, health etc. etc. you never know when life will change for the worse and sometimes you do not get a second chance like Jennifer and I did. Ok that is my preaching for the day. :)

We have been so blessed through all of this. We have really gotten to see what human beings and perfect strangers are really like. We live in a more caring and uplifting world than you may think. We never asked for anything but our church has organized meals, childcare, a live electronic feed to our home so Jen can watch church every Sunday in our family room and the list goes on. We also have had a tremendous outpouring of support from gift cards, meals, financial donations, housekeeping help etc. from the girls school and the school PTO. Amazing! People we have never even met are so generous when help is needed. Thank you to all of you!!!

As Summer approaches and the girls have their last full day of school today we look forward to Jen getting better a little more everyday and receiving a little more freedom every week.

I will give another update soon.

With Love,

Rick and (The new and improved) Jen

Friday, May 27, 2005 5:29 PM CDT

Hello everyone.

Not a whole lot to report but that is a good thing.

Jen has been doing very well at home. Her blood pressure is now under control but it is still running pretty high for her. It will just take time as her body gets used to all the things going on inside of it on a daily and hourly basis.

Jen has alot of her strength back. She is an organizing fool right now. We just cannot keep her down! She has me running tons and tons of errands as well as lots of house and yard duties. She is a tough boss, more like a slave driver... :)

Jen's hair is coming back very quickly right now. It gets longer and thicker by the day. Her hair is about 1/8th-1/4th of an inch on average. It appears to be dark at this point. Jen is thrilled that her hair is coming back so early. The growth is about 2 months ahead of schedule.

Jen is doing alot of sitting in the yard. She is just taking in all of the flowers and the nice weather that we have been having.

Jen will see the doctor for the first time since the second post-transplant admission on June 1st. We will keep you all updated as to how everything goes.

We were featured in the Plainfield Sun as the cover story (again) :) last week. They have done a wonderful job keeping the community updated on Jen. The paper then sells the article and information to other papers around the country. We keep hearing all the time that we were read about in California, Texas etc. It has been a blessing because we have made so many CIDP friends due to our publicity. We have also helped several people get to or get in touch with Northwestern because of the publicity. It feels so good to give others hope when they felt they had none left. That is where we were at several months ago and it is a very scary and disheartening feeling.

Jen and I just wanted to say another heart felt thank you to everyone who is praying for us as well as those who have helped out with meals, childcare, monetary donations etc. We could not have done it or keep doing it without you. Our church and the PTO at the girls school has been extremely instrumental in all of this as well. God has truely blessed us during such a difficult time!

Have a wonderful weekend and a great Memorial Day.

Love,

Rick and Jen

Saturday, May 21, 2005 9:25 AM CDT

Good Morning!

We have been adapting to Jen being home very well. The girls and even Harley seem to be back in the normal family mode, aside from all the handwashing, mask wearing, clothes changing, frequent shower taking etc. that has now become the norm for The Osman's.

Jen has broken her record of staying home. Today marks the sixth day in a row that she has been home post-transplant and post two hospital stays since transplant. Hallelujah!!!

Overall Jen feels pretty good. She is not as fatigued and the daily nausea is slowly decreasing. Jen is LOVING being in her yard and looking at all of her hard work of bush and perennial plantings from years past. She still has me doing some more plantings for her this year and I JUST LOVE IT! ;0...

The response of being home has been overwhelming and wonderful at the same time. We have meals brought to us just about every night. We are receiving so many offers of help for anything from our neighbors, church and the girls PTO at school. What a blessing!

We were in the Plainfield Sun again this week. Cover stories and loooong articles have become the norm for our family, we are getting used to it. The article will be sold to other papers around the country as it was before so I am sure we will be getting contacted frequently once again. It feels weird to be recognized in public once in a while. We also have a large banner on the front of our home welcoming Jen home. We get alot of traffic to see it and people have actually stopped to talk to us about it. Yesterday a lady stopped and said she was a horticulturist. She wanted to know if she could come over and plant some flowers around our yard so Jen could have something pretty to look at. The public generosity and concern has also been unbelievable.

This situation has truely changed our lives. Jen and I have been instrumental in helping many others get to or get in touch with Northwestern and our e-mail and phone list has dramatically increased with CIDP patients from all over the country and a few outside the USA who have now become our friends. Everyday Jen gets a little closer to wanting to become an advocate for stem cell transplants or research or creating and heading up a foundation and beginning the writing of her book. God has truely blessed us through such a traumatic thing!

We are going to enjoy our beautiful weather today and watch some other people plant some flowers for us, that is the best way to enjoy that in my opinion :). The only thing that I have to be patient for, but it will be worth the wait, is getting Jen well enough so we can go riding on my motorcycle again, I will miss that tremendously this year.

Love to all and enjoy each day that God has created for you!

Rick and Jen

Saturday, May 21, 2005 9:25 AM CDT

Sunday, May 15, 2005 6:32 PM CDT

Hi everyone.

Well the rollercoaster ride continues. We are back home now. They say the third time is the charm, right!

Jen is feeling better but somewhat nauseaus and fatigued. Her vomiting has ceased and her blood pressure is under the control of three medications. Jen's normal blood pressure now is between 140-160 over 90-100. We just have to accept those readings for now.

The doctors explanation for the hypertension is that Jen's body and internal systems are experiencing a type of post traumatic stress from the transplant process. We have to continue to remind ourselves that even though Jen looks so good on the outside she is going through so much physiologically on the inside. Jen's immune system is only at 20ow and this is still so critical. We are going to experience so much over the next several months in regards to Jen's physiology of the transplant. Hopefully this will not require anymore hospitalizatons.

The labwork we were waiting for results on came back. Jen's urine tests were negative and her (special) bloodwork tests that were looking for pheochromocytoma were also negative.

The plan for Jen is to have weekly bloodwork done at home. Jen is also to continue on her huge amount of oral medications. We follow up with her doctor in two weeks. And thank God that is all for now!

Rick...

Friday, May 13, 2005 7:25 PM CDT

Hello. Well here we go again!

I am so sorry (once again) to say that Jen was admitted to Northwestern this afternoon. This was a shock and unforseen until today but right now it is the best thing for her.

Since Jen's last discharge she was at home feeling wonderful. She fatigued easily but overall she felt pretty good. Last night Jen went to bed and when she woke up this morning she had a headache and a very high blood pressure (148/110). Later in the morning she began to vomit. We called the transplant team and had an emergent admittance to the immunology clinic at Northwestern to see Jen's doctors. Upon assessment the doctors were satisfied that some medication changes as well as a little more aggressiveness toward the elevated bloodpressures should be adequate to send her home and see how she does over the weekend. It was at that point that Jen began to vomit even more and then we had no choice but to admit her.

At this point the doctors are at a loss as to what could be making these up and down swings for Jen. There is no explanation for the elevated bloodpressures and there is no concrete answer as to what type of infection (if any) that Jen may have. I mentioned this quite a while ago in an update about how complex and miraculous are bodies are and this is a prime example. The only concrete thing that we can go on as of now is that the receptors in Jen's brain that signal nausea and vomiting are abnormally sensitive since the transplant.

So what is the game plan? Jen will be here (hopefully) for no more than three days. She will receive IV antibiotics and she will be agressively treated for her hypertension. The doctors have ordered a vast array of tests from swabs, to blood workups to cultures. They will also treat her to stop the nausea and vomiting.

Please keep all of us in your prayers, especially the girls. The toll is tremendous and the patience is thinning for all of us. It is so ironic that the Plainfield Sun newspaper came over yesterday to take pictures and do a follow up interview on us for next weeks paper. Little did we know!!! :(

One thing to continue to praise God for even in this time of stress and uncertainity is that Jen appears to be in full remission from her C.I.D.P. Her reflexes are fully functional and her numbness and tingling are exceptionally decreased. Just trying to stay positive.

I will keep you all updated as best I can.

Rick...

Wednesday, May 11, 2005 8:26 AM CDT

Hello.

Well, we are home again! What a great feeling!

Discharge from the hospital went well. Jen felt pretty good yesterday and she was so excited to get home. Guess what the first thing Jen did when we pulled into the garage, she put her mask on and went to check on all her flowers, bushes and trees. That is Jen for you!

Jen is currently on four blood pressure medications. That being said, Jen's blood pressure is under control. Jen will have home health coming to the house two times a week for bloodwork and vital sign monitoring. Jen will also begin a regimine of IVIG treatments for a few months to replace immunoglobulin that will aid in destroying her sinus infection.

Overall, we are adjusting to homelife once again. Jen is very fatigued but happy to be home (again). The girls are so happy to "be a family" once again. On the days that I am gone for a few hours we have volunteers from our church to come and be with Jen. This is because Jen should not be handling any food or doing any physical work etc. Jen is also (a little) scared to be alone right now because of what happened on Monday May 3rd. Jen will see her doctor again next Monday and we should have the results from the pending tests at that time.

If any of you are thinking of stopping by to see Jen please call prior to doing so.

Sincerely,

Rick...

Sunday, May 8, 2005 7:51 PM CDT

Good evening.

Around 2:30am Jen awoke with severe fatigue, left sided body numbness, mental fogginess and a blood pressure of 177/102. The doctor ordered an increase in Jen's two blood pressure medicines with vital signs observed every thirty minutes. As of now there has not been any significant changes in Jen's blood pressure.

Throughout the day today Jen has continued to maintain a high blood pressure as well as feeling fatigued and minor nausea and headaches at times.

Jen completed her 24 hour urine specimen tonight so we will see if that shows anything significant. Jen also had some bloodwork done today to check some other possibilities; however, we were told that those possibilities will probably not be significant.

Jen had an assessment done by an endocrinologist today to see if there is anything going on hormonally. He feels that his assessment reveals that there is nothing wrong with Jen hormonally.

Overall it has been a very mentally taxing day that has crossed over to being physically taxing as well. Jen was unable to see the girls on this Mother's Day because Bethany has tested positive for strep throat. She has a high fever, sore throat and vomiting. Even though Beth felt somewhat better today we cannot put Jen or the other 31 patients on the transplant unit at risk of a viral infection.

There is talk of sending Jen home in a day or two but we will see. Please pray for something significant to turn up in regards to Jen's blood pressure issues as well as our mental wellbeing, we feel as if the end of our frustration rope is not too far off.

Rick...

Friday, May 6, 2005 4:50 PM CDT

Hello everyone.

Jen is doing so-so today. She began the morning with vomiting and nausea. Yep, we are back to that again. It is not as bad as the last hospitalization but it is making its presence known again.

Jen's EEG and MRI came back negative so there is nothing to be concerned with there. Jen had x-rays of her sinuses and teeth taken yesterday and also had a consult with a dentist. There was some concern about a tooth root that is penetrating Jen's maxillary sinus and that could be causing an infection. According to the dentist and the x-rays there is a small infection and fluid build up in the maxillary sinus but not enough to create all of Jen's current problems.

Jen has been struggling with hypertension since she has come back to the hospital. She has NEVER had high blood pressure before so this is a mystery. Jen's blood pressure medicine was doubled today and her blood pressures are still high. Jen also had some heart palpitations today so she had a STAT 12 lead EKG done. Everything appears to be OK with the heart.

The hospital staff as well as me and Jen are concerned with Jen's vascular access. Jen's central line has been removed and she is a very difficult IV stick. Jen has had to have her IV changed 3 times since Monday and every line we get is a miracle. Please pray for continued IV access for this is going to be a big issue for the future of her hospitalization.

The game plan for now is to treat Jen with 3 weeks of antibiotics, increase medications and find other medications to take down her high blood pressures and to do a 24 hour urine specimen. The 24 hour urine test is looking for a possible problem with Jen's adrenal glands. If the 24 hour urine is positive then an ultrasound or another MRI will be performed on Jen's adrenal/kidney area looking for a possible tumor. This is all we want to say about this until we have something definite.

Please pray for a negative 24 hour urine specimen and no other (major) complications. The toll on both of us (especially Jen) is becoming tremendous and harder to deal with everyday so prayers for us as well are appreciated.

Sincerely,

Rick...

Wednesday, May 4, 2005 7:38 PM CDT

Good evening everyone.

Well, here we are again! I was so sure when we left here a week ago that that would be it as far as long hospital stays go.

Jen has been doing somewhat better since Monday. The (scary) full body jerking has subsided and Jen is regaining most of her mental faculties. She is not talking slowly anymore and she is (usually) on top of most mental things now. Sometimes she is forgetful but for the most part she is better.

Jen's CT scans came back showing a minor sinus infection. This is not the infection that is making things go haywire though. Today Jen went for an EEG test and tonight she will go for an MRI of the brain. The doctors are looking for anything that may have been missed previously. Some concern has arisen as to the type of symptoms that Jen had exhibited on Monday with the uncontrollable full body jerking and memory loss/function. Jen had a consult with our neurologist here and he thinks the symptoms that were exhibited are central nervous system symptoms and not peripheral nervous system symptoms which is what Jen's disease is, peripheral nervous system. He is convinced that this is not her CIDP but something else which has yet to be discovered/uncovered.

Jen still continues to exhibit high blood pressures. Since Monday Jen has not had a blood pressure under 145/95. She has always been in the 110/70 range so this is frustrating as to why it fluctuates so much. Jen is still running a low grade temperature and she has several periods during the day where she sweats profusely and then gets the chills. Overall Jen's labwork is normal. The white blood cells have dropped a little and she is being treated for a potassium imbalance but otherwise all is well on the labwork scene.

Please call or visit Jen if any of you are able. She is lonely, sad, frustrated and just plain "sick of this!" She has not regretted the stem cell transplant but her spirits could use a boost right now.

Rick...

Monday, May 2, 2005 8:14 PM CDT

Hello everybody.

I am sorry to report that Jen was admitted to Nothwestern again today.

Last night Jen began feeling "infection like" symptoms. She had a terrible night's sleep and woke up this morning very agitated but overall OK. Around 10:00am she could not focus on simple commands, she lost neuro functioning very quickly, she developed a fever and she became mentally unstable. She could not remember Dr. Oyama's name or where he was located nor could she remember simple phone numbers or addresses. Jen was able to contact our pastor, Fred and he came over and contacted Kimberly, our nurse on the transplant team and she wanted Jen at Northwestern ASAP. Upon seeing Jen in the clinic they determined that Jen needed STAT plasmapheresis. Upon administration of the plasmapheresis Jen's blood pressure went up to 180/100 and she developed full body jerking that resembled a seizure. The plasmapheresis was stopped immediately and Jen was transported to the emergency room for intervention. Jen has had four episodes of the full body jerking and each one lasts anywhere from 15-40 minutes. During these episodes Jen has visual disturbances, cannot respond correctly to commands, cannot talk, has severe right sided weakness and left sided numbness and tingling. A stroke (CVA) and TIA have been ruled out by a CT scan of the brain.

Tomorrow Jen will have either IVIG or plasmapheresis and an MRI of the brain. Jen will continue her IV antibiotics that she was placed on tonight and a better and more thorough game plan will be established once the blood cultures come back in a few days.

The general concensus is that Jen's "bad" antibodies have not yet metabolized (this could take up to 3 months) and she also has an infection. When the infection meets those "bad" antibodies a major exacerbation of her CIDP takes place and everything goes haywire.

Jen is still mentally "out of it" but she is resting as comfortably as she can. We are both pretty unnerved right now and in a daze about the whole thing. It happend so fast!

Please keep Jen in your prayers as well as Meg and Beth who are once again wondering why their Mommy has been taken away so unexpectedly, it is taking a real toll on them.

Rick...

Thursday, April 28, 2005 1:14 PM CDT

Hello!

WE ARE HOME!!! THE REAL HOME IN PLAINFIELD, THAT IS!

Jen and I are so happy to get back into the "normal life" mode. Things are going to really change now in regards to infection control etc. but that is OK.

Jen had her follow up visit with Dr. Oyama today and he is very pleased with the way things are going for Jen. Jen will continue weekly bloodwork and return to see Dr. Oyama in two weeks. There are a multitude of things that are going to happen in regards to CIDP testing as time moves on, specifically six months to one year from now. Jen also had her central line removed today. WE GOT TO KEEP IT! It is very special to me because it is what delivered the life saving procedure to Jen. Maybe we will get it bronzed. :)

Dr. Oyama stated that the antibodies in Jen are not yet metabolized; however, Jen's immunesystem is no longer producing the bad anitbodies. Dr. Oyama stated that if Jen is to need a plasmapheresis or two within the next six months it is nothing to worry about. Dr. Oyama is minorly concerned about Jen's liver function and the lab values that it is showing. He stated that this is (usually) typical for transplant patients and should resolve within the next few months. This is why the weekly blood tests wee ordered. The blood tests will be tapered to monthly once the liver tests are normal.

We were very pleased with the CBS2 news story on us. They did a fantastic job on covering everything we hoped to get covered. Dr. Oyama said that Northwestern is already receiving calls regarding the story.

Jen has been very emotional leaving the hospital and during the office visit today. She cannot believe that she was the first one to undergo such life saving treatment. She cannot believe that the transplant and chemo etc. are all over already. After the doctor visit today we stopped on the 15th floor to see our nurses, it was very good but emotional. EVERYONE hugged Jen and were so glad to see her.

I will write again in a few days.

Love and thanks to each and everyone of you, you have our undying gratitude.

Love,

Rick and Jen

Wednesday, April 27, 2005 8:39 AM CDT

Good morning!

We are in the hotel now until tomorrow. Jen will then have her first doctor appointmemt since discharge from the hospital. So far everything appears to be going all right.

Jen has been doing OK since discharge. She is very, very (and I stress very) fatigued and sometimes "out of it." This was expected though. Jen is on a multitude of medications and it is tough trying to remember the schedule of taking them. I think there are 9 or 10 bottles of medications. Whoa! Jen has also been vomit free with minor bouts of nausea. In small quantities Jen is eating normal foods that she is allowed to eat and keeping them down as well.

Jen has been gong stir crazy in the hotel. SHE CANNOT WAIT TO GET TO HER REAL HOME! Jen is a little nervous because she is so weak, unsteady, fatigued and she is feeling some of the symptoms of CIDP, such as numbness and tingling in her extremities as well as facial twitching. We were told that this is not of major concern for it is (more than likely) expected.

The transition from the hospital to the hotel has been so-so. We are in the real world now and it is scary and we have to keep reminding ourselves that Jen is still very fragile and critical and will be for some time. Lots of changes in a short amount of time!

Yesterday Mary Ann Childers from CBS news came to our hotel. She did a follow up interview with the both of us and it went very well. It was more of a social visit thatn a professional visit and it was nice. She is very sincere and genuine. The story of Jen will aire tonight at 10:00pm on CBS2 News.

I will write again after the doctor appointment and the transition to our home. It is stressful and scary but exciting to Jen at the same time so if there is not an update for a few days do not worry, we are just settling in.

Love,

Rick...

Monday, April 25, 2005 7:10 PM CDT

Hello everybody.

Can you believe it! After 34 days in the hospital Jen has been set free! She is so excited and scared and
nervous all at the same time. The feeling to be very clean and bacteria phobic will probably be with us for the rest of our lives but that is a small price to pay when the payoff is to have my Jen's life saved (literally).

Jen had her breathing treatment today and that went well. She was also briefed on what she can and cannot do for the next several months. The true test now begins. The protection and the waiting on of hand and foot is over and we have to learn how to live our lives all over again in a more sensitive world.

Jen will have her follow up appointment on Thursday and then we will return home to Plainfield.

As funny as it sounds we feel sad leaving. We have made so many friends and the staff has become our extended family. They all said Jen was the most popular patient on the unit because of her demeanor and kindness. We found out that other patients talked about her as well. We have had many, many, many hospitalizations and we have never had a bad experience but this hospital and unit CANNOT BE BEAT and for that we are forever grateful.

Thank you everyone for all the cards, concern, visits, gifts and prayers while Jen was in the hospital, we could not have made it without them. The updates will slow down a bit but they will not stop for quite sometime. I am so glad that all of you were able to take advantage of this website and I hope it helped.

Love to you all,

Rick and Jen

Sunday, April 24, 2005 7:32 PM CDT

Tonight Jen was moved into a different room. She is in room 1517. Her number there is 312-926-1517.

Hello everyone.

Well, can you believe we are on the eve of Jen's discharge to the hotel? She is so excited to get out of here and have a change of scenery.

Jen is very nervous to leave. She is unsure of the future and she is also very scared of bacteria. Jen has not had a breath of outside air for almost 5 weeks and she is greatly looking forward to that.

Jen is still nausea and vomiting free as of tonight. Jen's IV fluids have been stopped except for her last IV nutrition and her last IV antibiotic. Tonight she will be switched to oral antibiotics. Jen is starting to eat better and take her oral medications better also.

What does the future hold? Jen will be discharged to the hotel tomorrow. She will be there for one week and have home health RN's come daily for lab work. Jen will see her doctor weekly and bi-weekly for a month or so. Jen will be weaned off of her oral nausea medication over a two week period. Jen will then be placed on a low dose immunosuppressant for six to nine months. If Jennifer feels or notices anything that is out of the ordinary such as a mild pain in her knee or chills, fever, nausea or anything that you and I would not think twice about Jen will have to be re-evaluated and probably re-admitted. Fungal infections are very quick moving and deadly and they can disguise themselves in many forms. Jen will be able to have visitors at home but it will have to be very short and very strict. She will not be able to go outside in the sun and she cannot go out at night unless she is totally covered to prevent mosquito bites. We have been forewarned that extreme fatigue is on the horizon for Jen so much rest and sleeping is anticipated for the future. Jen will be able to go into public contact for very short periods of time in about three to six months. After approximately one year she should be back to normal living for the most part.

I will try to write as often as I can. I also placed the number of the hotel we will be staying at on the bottom of this page so you can contact Jen there.

Thank you, each and everyone, so very much for your support and concern and prayers during Jen's hospital stay. We will never foget it!

Love,

Rick and Jen

Friday, April 22, 2005 5:08 PM CDT

Hi everyone...WE ARE DAY 21!!! :)

GUESS WHAT??? Jen has gone almost 28 hours without vomiting! Jen has very few feelings of nausea and the vomiting has subsided and she feels wonderful about that. The new webpage background of balloons and rainbow colors shows the joy Jen feels right now.

Early yesterday Jen was placed on Decadron. Decadron is a steroid that aids in the ceasing of vomiting. I guess it works! There are quite a few bad and long term side effects that can happen with Decadron so that is why they waited so long to try it on Jen. Jen is also on a sublingual anti-nausea medication. Jen was placed back on IV antibiotics today for a persistent sinus infection. Jen still remains on the IV nutrition and that has given her alot of strength.

Jen ate 2 small pieces of meat and a piece of cornbread today. She also took her oral medications. Guess what, they stayed where they are supposed to, in her belly. Yeah! She is also saying that certain things sound kind of good to her, so we will see.

Jen is up to four laps around the unit at a faster pace today. Her eyes are clearing up on the outside but her sclera is still pretty bloody, bruised and yellow but overall things are looking up.

The plan is to keep Jen at the hospital until Monday for evaluation. The goal is to have Jen eating and drinking and taking oral medication without vomiting by Monday. If this works out she will be discharged to the hotel for about a week or so. The plan is to have her on IV nutrition at the hotel but we will see how her eating real food goes.

Jen's mood and attitude are good today. There is hope on the horizon but we also know things can change very quickly. Since we have been on the transplant unit we have met several transplant recipients and families. Three of them have been discharged and have since been re-admitted due to complications acquired at home. Please keep your fingers crossed as Jen crosses the protective barrier that her body is so used to as she goes into this dirty, bacteria filled world of ours. :) Jen has been given clearance to leave the transplant unit one time a day for a few minutes for a change of scenery. She is pretty apprehensive about that so I am not sure if she is going to leave the unit until her discharge date.

Overall the news is good from up here today which is very refreshing to me to write an uplifting journal entry for once. Jen still LOVES having visitors and she is asking for them even while she is at the hotel, so if you are able please consider.

Love to all of you,

Rick...

Wednesday, April 20, 2005 8:33 PM CDT

Hi everyone. WE ARE DAY +19! :)

There is not to much to report on this end today. Jen continues with the nausea and vomiting several times a day. There still appears to be no digestion occuring and the general concensus remains that Jen is experiencing severe residual effects from the chemotherapy, specifically in her stomach and intestines.

We had a consult with an internal medicine doctor today about Jen's situation and he also is at a loss. He is going to try Jen on a different type of medication regimine to see if that works. Nothing else has worked in the past so we have nothing to lose. The medication regimine is IV Reglan for nausea and digestion acceleration and IV Haldol for the vomiting. For those of you who have some medication experience I know these seem like strange medications for Jen's condition but they are supposed to work well together under these circumstances. We'll see!

Jen's poor eyes continue to get worse and worse. They are so swollen, yellow, bloodshot and glassy from all the vomiting.

Overall Jen had an OK day yesterday and last night and she is currently experiencing a tough day today. She is going stir crazy in her room, she cannot eat or drink anything and she is getting depressed about feeling so terrible all the time. To top it all off we received news early this afternoon that Jen will probably not go to the hotel in a few days. She will probably not be a candidate to leave the hospital until next week. Everything depends on Jen's ability to stop the vomiting and to keep oral medications down.

We are going to try to take a walk now. Jen is doing quite well with the walking. She is up to three laps around the unit at a quicker pace.

Good night.

Rick...

Monday, April 18, 2005 4:22 PM CDT

Hi! WE ARE ON DAY 17! :)

It has been a few days since tha last update and not much has changed with Jen's progress. Jen contiues to have nausea all day and vomiting 6-10 times per day. There appears to be no digestion or dissolving occuring in Jen's stomach. Jen has had a few occasions where she would take some oral medication and two to three hours later she would vomit the medication up and you could still see the stamped name and dosage on the pill.

Jen had a sigmoidoscopy and a gastroscopy today. The sigmoidoscopy came back normal and the gastroscopy showed a hiatal hernia. The hiatal hernia has nothing to do with the vomiting and nausea; however, that was a new discovery for Jen's anatomy. Jen also had two biopsies taken just for investigation. Right now the general concensus is that Jen is abnormally sensitive to the chemotherapy that she underwent a month ago. It is unknown as to how long this will go on, it may still be days or weeks.

Jen will start a new IV nutrition tonight. This new IV nutrition will have more vitamins, minerals and calories than the previous IV nutrition. The plan is to have Jen on this new IV nutrition for a day or so at the hospital and then discharge her to the hotel where home health RN's will come and take daily lab values and continue the IV nutrition until Jen is able to eat on her own.

Overall Jen has continued with her vomiting all day yesterday and today. She still has no appetite and she is not hungry even though she is on day #9 without food. Jen's eyes are also very sore and black and blue as well as the whites of her eyes being bloodshot and yellow. She looks as if she was in a street fight. This is due to the severe pressure she endures while she is frequently vomiting throughout the day. All the capillaries and blood vessels in and around her eyes are broken and producing the swelling and bruising.

Jen had quite a few visitors this past weekend. It was tiring but good for Jen. She really enjoys "the change of scenery."

I spoke with Mary Ann Childers from CBS News today. We are re-scheduled to be on the 10:00pm news on Wednesday the 27th of April. Keep your fingers crossed, third time is a charm, right?!?

I will write again in a few days.

Rick...

Friday, April 15, 2005 7:52 PM CDT

Hi everybody. We are on DAY 14!

Everything appears to be going well with Jen as far as the transplant goes. Jen's labwork keeps peaking and then dropping but that is not a reason for concern, it is actually expected. It appears that the engraftment of the stem cells to the bone marrow is still on schedule and that the process is continuing to work.

Jen is still very sick and vomiting quite alot. She cannot keep ANYTHING down. We have tried regular food, IV food, liquid diet, ice chips, popsicles etc. and EVERYTHING comes up. Jen is also still very fatigued. Jen took two laps around the transplant unit today and now she is wiped out. It was a nice walk, "The Girl's" were here and were able to accompany Jen on her walk. I am so proud of "The Girl's," they are so patient and calm with Jen and they do not even think anything bad when Jen goes out of her room with no hat and her bald head. This situation has made them so independent, patient and grown up. I wish they did not have to experience all that they have been through in the past 2 1/2 years but they have adjusted well. Yes, I am a proud Dad!

Jen has developed severe sinusitis which was confirmed from the CT scan on Wednesday. She has been placed on yet another antibiotic to treat this new complication.

Jen had a consult with a gastroenterologist tonight. They are going to perform a gastroscopy (scope of the stomach) and a sigmoidoscopy (scope of the colon) on Monday. They are looking for anything significant that may be causing all of this nausea and vomiting. The general concensus is that the nausea and vomiting is from the chemotherapy and that is probably right; however, they need to rule everything out to err on the side of caution.

Jen's spirits are still pretty rotten. She is in a real funk right now and I have never had a harder time trying to cheer her up. We just need to let her vent and that is why calls and visits do so much good for her. Having "The Girl's" here have boosted her spirits but Jen admits that she can only take so much of their company right now.

"The Girl's" and I went to the aquarium today and had a wonderful time. We are about to leave Jen for the rest of the night so we can go eat and then tomorrow holds a morning of Michigan Avenue shopping....OH BOY that is dangerous! :)

I will talk to you all soon. We may have quite a few visitors on Saturday but as far as I know we have nothing lined up for Sunday so if anyone wants to take a ride down to Chicago on a beautiful weekend day just call.

Rick...

Wednesday, April 13, 2005 9:30 PM CDT

Hello everyone. WE ARE DAY +12!

I know that I am disappointing all of you because Jen is not doing the update tonight but I'll try to do my best. I was just as suprised as all of you to see that Jen wrote her own update. She did not let me in on that little suprise. I got a kick out of the update because you could see how she was under the influence of medications with all of her misspelled words and run on's.

Today, as usual, there is nothing too good to report other than Jen's lab values. Jen's white blood cells are 4.0 out of 5. Jen's platelet count is 93,000 out of 200,000 and her hemoglobin is 9.9 out of 14. These values are all great signs that the engrafting of the stem cells to the bone marrow has taken place so they can begin constructing a new immunesystem.

Jen has been sick all day once again. WE JUST CANNOT BEAT THIS NAUSEA AND VOMITING!!! Jen had several bouts of productive vomiting as well as diarreah. She tried very hard to eat something today but she cannot keep anything down. We had a consult with a nutritionist to see what else we can do to get her nourished without the aid of IV nutrition. Guess what! Everything we tried came up almost immediately. UGH!! Tomorrow Jen will start IV nutrition and hopefully that will go OK.

Jen has been placed on a slow release nausea medication that is placed behind her ear and she has also been placed on some IV nausea medications so we will see how that goes.

Jen was sent for another CT scan of the brain tonight. The doctors want to double check the brain to make sure there is no bleed and that there is no pressure on the brain which may be causing all the nausea and vomiting.

Emotionally Jen is struggling right now, so a kind word or visit even when she is discharged to the hotel is greatly appreciated. Tonight Jen and I went for another walk. Jen, bless her heart tried her very hardest to pick up her pace during the walk and she just could not do it. It took about 15 minutes for her to do one lap and then she was exhausted. She began crying during the walk because she was lapped two times by a 70 year old man who had a walker and oxygen. She is getting very frustrated and wonders if this will ever end.

Many of you are inquiring about how I am doing so I will tell you that I am very emotionally and physically tired. I have not slept more than 3-4 restless hours per night since Jen was admitted. This is very difficult to watch your hero, best friend and wife be so sick all the time and then add the previous 2 1/2 years to that, it is very difficult. Thank you all for your concern.

Well, Jen just received some IV medication that will put her out for the night so I am going to go to the hotel now and try to get at least 5 hours of restless sleep. :) Jen sends her love and thanks.

I will update again soon.

Rick...

Tuesday, April 12, 2005 8:19 PM CDT

HI EVERYONE!

RICK IS AT SCHOOL TONIGHT AND I THOUGHT I'D GIVE AN UPDATE. CAN YOU TELL I'M LONELY AND BORED? I GET SPOILED WITH RICK HERE ALL THE TIME. HE IS MY ONE SURE SUPPORT. I FEEL LIKE AN EMOTIONAL MESS TONIGHT, I'M CRYING AS I'M WRITING THIS WITH MY HOSPITAL DOOR SHUT. I GUESS IT ALL STARTED WITH ME CHECKING ON ALL THE NICE NOTES I HAVE IN MY GUEST BOOK. THAT'S ALWAYS UPLIFTING TO READ, BUT OF COURSE CAN START TEARS. I THINK AS THE PROCESS GOES ON AND PHYSICAL THINGS CALM A BIT, THE WHOLE EMOTIONAL THING OF THIS EVENT SETS IN ALONG WITH LIKE RICK SAID, THE MISSING OF THE LIFE OUTSIDE,THE GIRLS OF COURSE ,MY DOG,SEEING PRETTTY FLOWERS COMING OUT NOW, THE UNCERTAINTY OF THE FUTURE RECOVERY AND MY DISEASE, WETHER IT WILL EVER REAR IT'S UGLY HEAD AGAIN. I KNOW I NEED TO STAY POSITIVE, AND FOR THE MOST PART I AM.

WELL I WAS TOLD IT SHOWS THE ENGRAFTMENT OF THE STEM CELLS THAT WERE INFUSED ON APRIL 1 HAVE SHOW SUCCESS BECAUSE MY WHITE BLOOD CELL COUNT IS .9 AND SHOULD ONLY GO UP FROM HERE, MY PLATELETS WENT UP TO 46. THESE ARE BOTH CRITICALLY LOW STILL ,BUT SHOW A TREND OF INCREASING DAY BY DAY! TODAY IS 11. I KEEP BEING TOLD YOU SHOULD START FEELING BETTER, BUT THAT IS NOT CONSISTENTLY HAPPENING. TODAY WHEN I WOKE UP AND HEARD THE RESULTS OF MY BLOOD TESTS, I THOUGHT THIS IS GOING TO BE A GREAT DAY. THAT QUICKLY TURNED WHEN I VOMITED AT 7:30 WITH NOTHING IN MY STOMACH. tHAT NAUSEA, FATIGUED FEELING CONTINUED UNTIL ABOUT 7:OO PM. I THREW UP AN ADDITIONAL 3 TIMES THROUGH THE DAY EVEN AFTER TRYING THE PEANUT BUTTER SANDWHICH I WAS ABLE TO KEP DOWN YESTERDAY. I OF COURSE NEEDED MY SEDATING ATIVAN 1 MG IV SO AS TO MANAGE THE NAUSEA. SO THERE WENT MY VISIT WITH RICK AND THERE ONE AGAIN WENT THE WHOLE DAY. MY NICE NURSE WAS ABLE TO ASSIST WITH MY WALK AROUND THE UNIT THAT'S RECOMMENDED, SINCE RICK HAD KISSED ME GOODBYE TO LEAVE FOR SCHOOL WITHOUT ME KNOWING. ONCE AGAIN THE WALK WAS EXQUASTING, BUT GOT TO GET OUT. YOU'LL BE AMAZED ALL I WORE WAS A MASK AND A ROBE--NO HAT!! I KNOW I HAVE COME A LONG WAY TO DO THAT. MOST OF THE TIME IN THE ROOM I JUST HAVE MY BALD HEAD, IT'S JUST MUCH MORE COMFORTABLE THAT WAY. SO IF YOU COME FOR A SURPRISE VISIT,DON'T BE SURPRISED!

THE DOCTOR THINKS NOW THAT THE COUNTS ARE ON THE WAY UP, HE THINKS I CAN GO HOME BY THE WEEKEND, OR AT LEAST THE HOTEL. RICK AND I HAVE OUR DOUBTS ESPECIALLY WITH HOW TODAY WENT,BUT WHO KNOWS WHAT EACH DAY CAN BRING FROM HERE. HE SAYS MY TASTE BUDS WON'T COME BACK FOR A COUPLE OF MONTHS, AS WELL AS MY STRENGTH. HE'S HOPING I CAN START TO EAT AND DRINK AND KEEP IT DOWN SOON. SO DO I! THAT MIGHT BE THE DECIDING FACTOR. NOW THAT MY PLATELETS ARE UP MY BLEEDING HAS SUBSIDED, MY FEVERS ARE DOWN TO LOW GRADE, MY COUGH AND COLD PERSIST BUT SHOULD BE TAKEN CARE OF AS MY IMMUNE SYSTEM REGROWS. HE BROUGHT UP AN INTERESTING THING TODAY, HE SAID THAT MY ANTIBODIES THAT WERE PRODUCED FROM MY DISEASE ARE STILL THERE, THEY WERE NOT KILLED OFF ALONG WITH THE IMMUNE SYSTEM, BUT THEY SHOULD BE METABOLIZED BY MY BODY WITHIN A COUPLE MONTHS. IN THAT TIME I GUESS IF CIDP SYMPTOMS RETURN THEN I WOULD NEED PLASMAPHERESIS TO CLEAR THOSE ANTIBODIES. BUT LET'S KEEP POSITIVE THAT WON'T HAVE TO HAPPEN.

Love,

Jennifer

Monday, April 11, 2005 8:20 PM CDT

Good evening everyone. We are DAY 10! :)

I think I am going to stop with the updates (not really)because everytime I have to do an update Jen is always doing terrible. I do not want to sugarcoat the updates so I apologize that there has not been alot of positive things to report lately.

Yesterday Jen did pretty well. Last night Jen also did well except for a terrible mental breakdown. She is feeling very lonely, like she is the only one like her (she has a point). She also misses her home, dog, girls, GEMS, coffee break and the general day to day activities of the Osman household. There was alot of uncontrollable crying but we prayed and got through it.

Today Jen did horribly again. Jen had quite a bit of vomiting and she developed a very sore throat. Jen's fatigue was so bad today that she was in a state of semi-consciousness until about 7:00pm. The main reason for the extreme fatigue is from all of the drugs that they are loading Jen up with. We still have no difinitive infection diagnosis from the cultures. We are still treating a viral or fungal infection very aggressively. As I have said before this is of critical importance, if the infection gets ahead of us we have a very real problem on our hands. As of today Jen's white blood cell count is still 0.2, her platelets are 35 and her hemoglobin is 8.9. We are also agressively treating Jen to (still) prevent pneumonia.

Today Jen had a mild asthma attack. She quickly became short of breath and had wheezing in the upper right lobe of her lung. She was treated with an Albuterol breathing treatment, Solu-cortef and Benadryl. The breathing difficulty has since subsided. Jen was also put back on IVIG therapy today. This was done to try to give her immune system a jump start once again.

There were two bright points today. Jen actually ate a small portion of a baked potato and half of a peanut butter and jelly sandwich. Jen also took a 1 1/8th lap walk around the transplant unit. It took a while to do the 1 1/8th lap but she did it! Those of you who have not seen Jen in a few weeks would be amazed at how weak she is and what a big deal it is for her to get up and walk, something most of us take for granted everyday.

We are anxiously awaiting Jen's lab values to come up. This should start to happen any day now. We have been reassured that when this happens Jen will feel like a million bucks and the infection should subside very quickly. It is terrible that Jen has to go through this but it is amazing to watch how the human body tries to defend itself without an immunesystem. What an amazing and complex organism that we all are!

Hope to have better news in a day or so.

Rick...

Saturday, April 9, 2005 8:10 PM CDT

Hello. We are at DAY +8!

Overall, today is better than yesterday for Jen as far as the nausea and vomiting goes. She has had some vomiting today but it is not as severe as yesterday.

Jen is still struggling with a fever. Her fevers bounce back and forth all day from 99-101 F. So far there is nothing significant growing in her blood cultures. Jen had blood pulled today for some more cultures to be tested.

Jen had two units of blood today via a transfusion. Her hemoglobin is now very low at 7.9 and we are trying to keep that up as high as possible without fluid overload taking place. Jen has been put on a round the clock nausea medication. This was done to prevent her from having nausea most of the time and also to try to perk her up a bit. Jen is so tired and fatigued ALL THE TIME. Jen's white blood cell count managed to climb from 0.1 to 0.2 today. :) Jen's platelets still remain at 13,000. The doctors continue to monitor her for increased/continued bleeding and bruising.

"The Girls" were able to spend alot of time with Mom today. Mom was not very much company to them but just having them around is medicine in itself. We had a nice day outside of the hospital also. We went to Ed Debevics restaurant where the waiters are very rude to you (on purpose), the girls got a kick out of that. We also went to the Disney Store and NikeTown for new shoes for Meg. We topped the day off with a carriage ride around the city and the lake with a horse named Reebok. "The girls" were elated. Jen also had Pastor Jeff and her parents stop by. Though she is out of it alot she LOVES the visitors. Mom Osman, John, Uncle Andy and Aunt Vi came by yesterday unexpectedly and that was GREAT!

We are both very, very tired and stressed tonight for some reason so I will sign off now and possibly write tomorrow.

Good night.

Rick...

Friday, April 8, 2005 9:31 PM CDT

Hello everyone. We are day 7 today! :)

Jen has been having a very rough time since Wednesday. We cannot seem to get her fever and vomiting under control. The nausea has not subsided as well. As of 9:30pm Jen's fever was 101.1. As you all know this fever is the result of some sort of infection and is very critical for Jen. We by no means can let this get out of control so please pray for strength from the antibiotics so that the nausea and vomiting can subside. The doctors are doing everything they can to prevent the infection from spreading. Jen is still on round the clock IV antibiotics. She is also on many oral medications as well as IV injection medications. We have lost count of how many medications Jen is currently taking.

The blood cultures have not yet come back from the lab so we are unsure as to where the infection is lurking. Jen is also very lethargic and fatigued. She has a very difficult time staying awake and concentrating. It is very common for her to forget what she is talking about mid-sentence. She also has a difficult time remembering who she talked to or who visited her. We believe this is a result of the high doses of chemotherapy that she received last week.

Jen's weakness is very difficult for me to get used to. She has always been so active and hard to keep down and now doing one lap around the transplant unit is nearly impossible. One day at a time!

As far as the internal bleeding goes Jen still has some and we are unsure as to where it is coming from. It is not of great concern but it is being closely monitored. Jen will likely be getting platelet transfusions tomorrow. Jen's platelets are at 11,000. The normal range is 150,000-200,000. Jen's white blood cells are still 0.1 out of 5 and her hemoglobin is 8.7 out of 14. Jen's neutrophils are so low they are not registering as of yet. So, with all these low lab counts do you all remember what medicine calls this.........? The answer will be at the bottom of the page. Hint, it begins with an "N." :-)

Well, it is time to wrap this up. "The Girls" are here with me this weekend and they are loving being with their Mom. They have adjusted very well to all that is happening and they have matured so much. They have also become so independent. It is very strange to have a conversation with your 10 year old about central lines and "B" and "T" cells and CIDP exacerbation etc. etc. and she understands what is going on and knows how to talk about it. Amazing!

Until next time,

Rick and "The Girls"

Answer: NEUTROPENIC (NEUTROPENIA)

Thursday, April 7, 2005 3:53 PM CDT

Hello everyone. Today is +6 day!

Jen had a rough night. She experienced alot of vomiting and nausea. We are still unsure as to why she has all this vomiting and nausea but we are treating it accordingly with minimal results.

Today Jen had a little better of a day. Her neuro functioning has returned but not profoundly. She is able to get up at times and use the washroom by herself. She still had bouts of vomiting but that has subsided as of now. Also, around 1:00pm Jen began to feel foggy and weak again. It was no where near as bad as yesterday's event.

Jen is currently on three IV antibiotics, IV potassium, and IV nausea medicine. She is also on a multitude of oral medications. Jen will begin the neupogen injections in her belly tonight at 6:00pm. It is so mentally and physically straining to know that Jen is going to go through more pain and discomfort with more complications to arise so she is mentally exhausted right now. Jen's feeling of mental detachment has been better today. She is more "with it" and has even been laughing a little bit today. :)

We are treating yesterday as an exacerbation of her CIDP due to infection process. This does not mean that her CIDP is returning. The doctors believe that Jen has an infection of some sort and that threw her electrolytes out of (major) balance. The CT scan was negative for a brain bleed and the blood cultures are growing and will hopefully have some type of report tomorrow. Until then we just wait.

I also apologize for not updating you all yesterday on the status of our CBS interview. We were bumped again yesterday because the time slot that they had to put our interview on was only 45-60 seconds long. They want a slot of 120-180 seconds long to run the piece so as to promote Northwestern Hospital and the stem cell transplant protocol. It was a very hectic day yesterday so it just sllipped my mind to put that information into the update.

Well Jen is going to try to take a walk with me right now. I will write again soon.

Rick...

Wednesday, April 6, 2005 8:41 PM CDT

Well, we had a scare today but things are getting SLIGHTLY better tonight; however, Jen is still deep in the woods.

When I walked into the room today I had no idea that anything was wrong. When I saw Jen my heart sank. I thought she was unconscious. She was white as a ghost, laboring to breathe and had an almost non-responsive, blank stare on her face. I have seen that look a thousand times on ambulance calls that I had responded to but never on the face of someone close to me.

The brain CT scan came back negative. There was no evidence of a bleed in her brain so at this point we can rule out that Jen had a stroke. As far as Jen's internal bleeding goes, it has become minimal. There are no more nosebleeds and her urine is showing improvement everyday.

Tonight Jen is resting. Her body went through a large amount of trauma today and she is exhausted. She has regained some of her neurological functioning but it is minimal. Jen still needs help with most tasks.

Mentally Jen is still struggling. She forgets alot of things and often forgets what she is talking about right in the middle of her uninterrupted sentences. If you should talk to her and this happens please do not take it personally. Jen is also struggling to keep a positive attitude right now. How understandable! Your visits, calls and everything else mean so much to Jen.

Jen is being aggressively treated for a possible infection with iv antibiotics. Remember, Jen has no immune system so an infection will be life threatening. As far as what went wrong with Jen today we do not know. It could be an infection or a severe flare up of her CIDP, at this point we have no answers. Whatever it was it was not expected and it has thrown all of our transplant team for a loop. If Jen does not improve by tomorrow morning then Jen will have plasmapheresis. We will only do this as a last resort and we do not want to do this so please pray that Jen improves tonight.

Everyone is asking, if what happend today means that Jen's CIDP is not gone. We do not know the answer to that. I could give a synopsis of a theory but I do not know how to put it into layman's terms. Sorry...

Well, we are both going to bed, it has been a stressful, scary and exhausting day. Thank you for all of your concern, prayers, calls, etc.

Rick...

Wednesday, April 6, 2005 2:48 PM CDT

I am giving a condensed update at this time to let you all know about some major concerns that have developed with Jen.

This morning started out as any other with Jen. She had her usual nausea and vomiting but then started to feel pretty good. Jen went to the chair to sit down and after a few minutes she felt as if she could pass out. Jen paged the nurse and upon getting up to get back into bed Jen lost most of her neurological functioning. At this point Jen is on oxygen with some mild breathing difficulties. The doctor is concerned that a mild stroke may have occurred or a severe flare up from her CIDP got out of hand. At this point we do not know.

Jen says she feels detached from reality and her body and she has severe tingling in her entire body as well as severe numbness and weakness. In a nutshell she is dependent on someone to do everything for her again.

We are awaiting a neuro consult and possible plasmapheresis treatment. As I am writing this we received word that Jen is going down for a STAT CT scan.

I will write again when I am able.

Please pray!

Rick...

Monday, April 4, 2005 10:27 PM CDT

Hello.

We are on +3 DAY! :)

I am sorry that I have to keep giving such disheartening updates but last night and today were terrible for Jen.

Last night Jen slept very poorly. She was up to the bathroom many times and slept very restless.

Today Jen had some new issues arise. This morning Jen had many instances of nausea and vomiting and then she developed a pretty good nose bleed. Most of the morning and afternoon Jen was in a mental fog. Late this afternoon Jen began having some internal bleeding. We are not sure where the bleeding is coming from or why this bleeding is happening but when she urinates it is almost all blood. This is not an expected side effect of the treatment protocol so everyone is kind of scratching their heads right now. Currently we are watching Jen's labwork and will act upon those values. We are awaiting Jen's coagulation factors to come back from the lab and that may give us a more definitive answer.

Jen received two units of blood this morning via a blood transfusion. She handled that pretty well and there are more transfusions to come. Platelet transfusions will more than likely be happening soon also.

Jen physically looks better today. Her fluid retention has gone down and she has some of her color back. We do notice a difference in Jen's skin color and tone and this is due to the high doses of chemotherapy that she received.

Hopefully I will have a better update for all of you tomorrow. Until then, good night.

Rick...

Sunday, April 3, 2005 9:02 PM CDT

Hi everybody.

WE ARE ON POSITIVE DAY 2! It has been a very fatiguing and stressful weekend. Jen has been hiting more lows than highs and we are taking it a few hours at a time rather than a day at a time right now.

The nausea and vomiting has somewhat subsided today. Jen's wet cough and fluid overload is also better today. Jen was given a special breathing treatment this morning. This was done to pack a final punch against the development of pneumonia and more severe breathing difficulties. This treatment is begun by respiratory therapy and then everyone has to leave the room except Jen for one hour. The reason for this is that this treatment is toxic to anyone who is not immunosuppressed. Jen will be given this breathing treatment once a week for six months. This is not part of the CIDP protocol.

Jen's labwork is as low as it can go now. The counts are so low that when the labwork comes back from the lab the paperwork reads "counts to low to register, CRITICAL." The biggest problem we have to watch out for in regards to the low labwork is bleeding. Jen cannot brush her teeth with a toothbrush, she cannot floss or do anything else that could promote even the slightest amount of blood loss. In this situation bleeding gums can even be life threatening in regards to bacteria.

Jen was given IVIG today. This was done to help her immune system begin to re-grow. This is not normally done as part of the CIDP protocol. They are administering this to Jen because of the amount of plasmapheresis that her body is used to. They do not want to shock her system too much by taking away the immunoglobulin therapy all together, all at once. We have a hard time remembering that Jen is the first one for this type of transplant for her disease so practically everything is experimental with her.

Overall Jen looks so-so today. She is very pale and at times she even has purple tinged lips and nailbeds. Her spirits were pretty poor today also. She is very agitated about being held prisoner in her room and on the transplant floor. She has had such a great, positive attitude throughout most of this process so she is entitled to a few terrible mental health days.

Jen will be starting the blood and platelet transfusions soon as well as the neupogen shots. Please pray for strength and comfort as we have been forewarned that there a some very difficult, painful and mentally trying days ahead.

Jen sends her love and thanks to everyone for everything. She still requests visitors and calls and these two things help her tremendously so if you can visit her please do so.

I will write agian in a day or so. Talk to you all soon.

Rick...

Friday, April 1, 2005 8:06 PM CST

Good evening everyone.

Well, "DAY 0" is here! It has been a very gruelling and exhausting day that was also full of excitement, happy tears and emotion. Everyone please mark this day on your calendar as a birthday for Jen. We will have to celebrate two birthdays for Jen each year now.

Upon my arrival at the hospital this morning Jen was physically worse today than yesterday. Jen has had alot of vomiting, nausea and a full day of being in a fog. Jen cannot get rid of her "wet" cough and because of that she was put on lasix again. Jen has been giving her kidneys and bladder a full workout once again today and the fear of pneumonia is not gone yet.

The stem cell transplant took place at 11:30am and was a very emotional thing for Jennifer and I. The transplant team brought the frozen stem cells to Jen's room and thawed them right at the bedside. They were then taken out of the re-infusion bag and put into a syringe and over a 20 minute process they were transplanted back into Jen. Jen received 6 million stem cells today. The remaining 10 million stem cells will be in a frozen state here at Northwestern for the next five years just in case Jen needs them for something else. It is very amazing what happened here today. Medicine for CIDP has and will continue to change from this day forward because of Jen. In the span of twenty minutes Jen's life was literally saved and prolonged today. Praise God!

At 7:00am today Jen became neutropenic. She has no immune system and all her labs are dangerously low right now. This critical period will last for quite a long time.

What happens next? Jen will receive continuous blood and platelet transfusions. Jen will also start receiving neupogen shots again. The neupogen will begin to boost Jen's immune system and it will also find the transplanted stem cells, grab them by their little hand and guide them back to the bone marrow where they will begin to do the job of regrowing Jen's "new" immune system. Amazing! Unfortunately the neupogen will create the intense bone pain again and probably be worse than last time. Jen will also get more nauseated and have quite a few horrible days before the uphill climb will become more tollerable.

"The girls" were able to make it down here to see Jen after eight days of being without MOM. It was sooooo great to see them and be a family again, even for a little while. The girls will stay with me tonight down in Chicago and then go back home tomorrow with grandma.

Overall Jen has not been in very good spirits today. She is very fatigued, sick and foggy. Please pray for the uphill climb to get shorter each day and that Jen's discomfort decreases.

Feeling much joy but very fatigued,

Rick and Jen

Thursday, March 31, 2005 4:18 PM CST

Hello everyone. We are at -1 day. Tomorrow is the BIG day!

Well, what a loooong day for both of us today. Jen called me about 6:30am and asked me to come to the hospital to be with her. I could tell from her voice that things were not good.

Jen has been vomiting and feeling terrible today. Jen's last round of chemo was yesterday so the doctors are a little confused as to why she feels so terrible, espically when she felt so good yesterday evening. It is amazing how things can change so suddenly. Last evening Jen and I had a great night, we talked and hugged and just enjoyed each other without any major complications from her and then today it is terrible again. Please do not take life, health or your loved ones for granted, things can change for the worse so quickly. Ok, enough preaching.

The main issues for Jen right now are her sickness and a semi-productive cough that she has developed. Jen was placed on an antibiotic to prevent an infection, most specifically in her central line and graft site. She was given lasix for the cough and fluid overload so that pneumonia will (hopefully) not develop. Jen is also taking some oral and IV medications to stop her nausea and that puts her to sleep quite quickly. After administration of the lasix Jen excreted 3300ml of fluid in 90 minutes. That is equal to 3.3 pounds. Her puffiness and swelling has subsided somewhat but there is still a long way to go.

Jen is very close to becoming neutropenic today. I would not be suprised if she was neutropenic by tonight. As of 7:00am her white blood cell count was 1.8, her platlets were 138 and her hemoglobin was 7.4. All these numbers show a significant decrease from their normal values. If anyone should want to come and see her this weekend you will need to wear a mask.

Jen was to have a blood transfusion today but that is on hold because she is in fluid overload and a transfusion could overload her more plus with all the IV's she has going it will dilute the blood that they would hang. I know it sounds strange to say that Jen is fluid overloaded and because of that the doctors hang more fluid but alot of the additional IV's are to counter or combat things that are happening or combat things that they do not want to happen.

That is all for today. I will write again tomorrow. Please keep the doctors, nurses, Jen, me and all of the care providers in your prayers for tomorrow. The transplant is at 12:00pm or 1:00pm. It will only take a short time but there could be complications that could arise quite quickly, please pray for a successful transplant with a good outcome.

Sincerely,

Rick...

Wednesday, March 30, 2005 10:17 PM CST

Good evening everyone.

Things are going as well as can be expected for Jennifer. We are on -2 day right now. The BIG and rejoicing transplant day is Friday.

Jennifer finished her chemotherapy regimine today, YEAH! Jen still has two more rounds of the ATG to go through and then the drug therapy regimine to kill her immune system will be completed. Overall the sickness has subsided. The nausea, diarreah, dry heaves and vomiting for the most part are gone.

Jen's lab work has been dropping continuously and she should become neutropenic sometime tonight or tomorrow and this will last several days. This is (more or less) the most critical time of the hospital stay. Jen will have no immune system and all of her lab work will be at zero. The only defense Jen will have from any bacteria is the safety of her room, the transplant unit, gloves, gowns, masks and frequent hand washing.

Overall Jen has been feeling pretty foggy and in a daze for most of the days here. She tends to be at her best around late evening and that is just in time to receive more medication that knocks her out again. Jen and I have been walking around the transplant unit once everyday. Jen usually makes one lap and then becomes very fatigued and short of breath but anyone who knows Jen knows that she musters up the strength to make it at least another half lap or even a full lap.

Jen and I are still in a daze about being here at Northwestern and receiving this treatment. Jen is changing medicine, CIDP and literally saving her life. It is still surreal. We thank God everyday for the doctors, nurses and the transplant process.

We recived news late today that CBS2 Chicago is not going to air Jen's story until April 6, 2005. We are not sure why there is a delay but that is the best information that I can give right now. Please watch this website for updates on the interview.

Jen is so thankful for all the guestbook entries, the calls and the e-mails. She looks forward to looking at the website everyday and she looks forward to visitors also, thank you all once again. Jen is keeping her sights on Saturday when "The Girls" will finally get to see her for the first time since we have come to the hospital. It should be emotional but happy.

Rick...

Monday, March 28, 2005 4:55 PM CST

Hello.

Today is a beautiful day from Jen's hospital room. There are a few puffy clouds in the sky, otherwise it is very bright and beautiful. We can almost see the shoreline of Michigan today.

Jen is not doing well today. As you all know Jen started the ATG protein and has been having chemo administered everyday since Sunday. Late last night the drugs and chemicals finally caught up with Jen. Jen has had lots of vomiting, diarreah, dry heaves etc. Jen has alot of water retention also. She has put on about four pounds since yesterday and she has hardly been eating. Jen has so much being put into her that we have lost count of what she is on and believe me when Jen can't keep track of her medications it is severe. Right now as I write this there are six IV bags hanging on her IV pole with five IV lines running everywhere. Jen has also been taking alot of medications orally and through her IV to combat side effects and other potentially life threatening situations.

Jen's potassium is low once again. We are not sure as to why this is but they are treating her with an IV potassium drip and oral potassium. Jen is also receiving lasix to try to reduce some of the water retention.

As I was writing this I was going to say that Jen's spirits are pretty low today but that just changed. A stem cell transplant patient that is being discharged tonight just came by to say hello and to see how Jen is doing. It was a very positive meeting for Jen and her spirits are lifted right now. This patient had lupus and she said she is feeling WONDERFUL since the transplant. She is on +10 days. We exchanged personal information and are slowly but surely developing a special support network for Jen and other patients who are or will go through a stem cell transplant.

This is all the information that I have for you right now. I will probably write again tomorrow but that is not a definite.

Sincerely,

Rick...

Saturday, March 26, 2005 8:28 PM CST

Hello everyone.

Today we started the chemotherapy treatments that will begin to prepare Jen and her body for the stem cell transplant. In technical terms we are minus day 6 (-6). We will count down in the negatives until we get to day zero then we will have the transplant on day zero and then count up from day zero into the positive numbers. The transplant day is looked at as a "birthday" or "celebration" day.

Jen's fevers are gone for the most part today. Jen is feeling pretty good but very tired. She is receiving alot of drugs to prevent side effects from the chemo. We have been forewarned that Jen "will more than likely" develop side effects from the chemo. Of course an infection is the most serious but pneumonia is also of great concern. The nursing staff is amazed at the drug therapy regimine that Jen is on. The nurses stated that they have never seen such an in depth drug therapy regimine for someone before.

Jen started ATG around 2:00pm today. ATG is a protein harvested from rabbits that is an immunosuppressant. How ironic that Jen is getting a rabbit protein infused into her on Easter weekend. :) ATG will target Jen's "T" cell lymphocytes and destroy them. ATG is infused into Jen for 10 hours everyday for 6 days. On day -5 Jen will have cytoxan infused into her over a 2 hour period. This will go on for 4 days. The dose of cytoxan will be 20% more than what Jen received 3 weeks ago for the mobilization chemotherapy and that dose was 4X the normal amount of chemotherapy.

Overall Jen's spirits are very good. We walked for two laps around the unit today and right now that is a big step for Jen. We are making alot of friends with the nursing staff and even some patients that will hopefully last a lifetime.

We talked to the girls today. They are having fun at their cousins home. Meg was very concerned about mommy getting her central line placed, then she was concerned about mommy getting the pain medicine for her central line. She is so sharp! She can rest easier now that that step is over. Beth is just Beth and rolling with the flow.

Everyone have a WONDERFUL EASTER! We will spend yet another holiday away from the girls in a hospital room but hopefully this is the last time for that.

Much love,

Rick and Jen

Thursday, March 24, 2005 4:02 PM CST

Well the day is finally here. It seems like yesterday when we saw the segment on the news about Northwestern and here we are. It has been a long road thus far and it is going to get even longer but eventually the end will be in sight.

Jen has been doing very well in the past few weeks. Jen (hopefully and prayerfully) had her last plasmapheresis on Tuesday the 22nd of March.

Last night leaving the girls was torture for all of us. The girls cried and cried as did we. That has probably been the hardest thing of all to do thus far. No matter what you say or do about the situation it does not help when the girls' mom leaves them indefinately.

Now, how did today go?!? Not good! We were told to expect complications and we are starting out with them already. We arrived at the hospital about 8:00am. Jen and I had her consult with radiology and graphically explained to them how difficult the insertion of the central line will be. We stated Jen will need sedation and not just a local anesthetic. After all she has been through this seven other times. Well, a very simple, short procedure took one and a half hours and Jen got pretty beat up, without sedation. UGH! Anyway, the line is in and we praised God for that. As you all may know Jen has severe subclavian stenosis and the prospect of not getting a central line in was a great possibility. Jen would then not be a candidate for the stem cell transplant and all treatment options would then be exhausted for her.

Jen was scheduled to start a ten hour ATG chemotherapy regimine tonight but that has been put on hold because Jen has a 100.3 fever. If the fever is not gone by tomorrow then the process is going to be delayed one week. The delay is done so that Jen's immune system will not be on overload. The chemo is going to destroy her entire immune system and if there is an infection running around in her it can get fatally exacerbated. Jen is expected to have allergic reactions to the chemo as well as some other unpleasant complications, possibly even pneumonia. Jen will be treated for the complications before they even arise but exacerbation is of utmost concern. We are unsure if Jen will come home during the time of delay or stay as an in-patient. Overall Jen feels pretty crummy today and is trying her best to rest.

CBS2 news came to our home on the 22nd and interviewed us and videotaped the girls doing their usual after school stuff. The girls were all giggles and mildly camera shy but they felt so special and important. CBS2 news came to the hospital today and videotaped me and Jen and interviewed Dr. Oyama. It is so interesting and exciting at the same time. The segment should air on Wednesday or Thursday, the 30th or 31st of March on the 10:00pm news on CBS. Northwestern media department also said they will be contacting us in regards to "something else coming up." Whatever that means.

All the media attention and the website have been so wonderful. We have gotten e-mail's and even phone calls from all over the country and even Canada inquiring about Jen, CIDP and the stem cell program at Northwestern. We received an e-mail from someone in San Francisco whose 7 year old daughter has CIDP and we are helping a person in Canada who has CIDP get in touch with Dr. Oyama. We received a call on Wednesday night from a person who lives an hour from us with CIDP and she and Jen are able to talk and relate to each other. Jen has never spoken to another person with CIDP until Wednesday night.

I will keep you all posted and write again very soon.

Thank you for all the calls, cards, meals, prayers etc. It has been a big help and a big emotional boost for the both of us.

With love,

Rick and Jen

Thursday, March 17, 2005 5:44 PM CST

Hello everyone!

Since Jen's release from the stem cell harvest not alot has been happening. Jen has been carrying on with minor daily activities and getting her weekly plasmapheresis treatments. Jen's weakness is still present but it is not progressing (very much) any longer. Jen is still very fatigued everyday. The littlest things that she does makes her very tired.

So far Jennifer is perfectly on schedule, including the hair loss. Jen's hair began coming out about two weeks ago. Then about 5 days ago her hair was coming out in large clumps. On Tuesday Jen took a shower and almost all her hair just fell out of her head. This was extremely upsetting for Jennifer and for me as well. We cried together. Jen was so upset because her hair was gone and I was so upset because I am so tired of seeing Jen in physical and mental pain and seeing Jen lose her hair broke the camels back for me. After much contemplation Jen decided to have me shave off her remaining hair. At first Jen had a hard time looking in the mirror at her shaved head but that quickly changed. It felt like the weight of the world was lifted off of our shoulders as the last hair fell to the ground.

Jen has a large assortment of hats and a few wigs that she looks so cute and spectacular in. And yes, I am partial to Jen but SHE LOOKS HOT with her shaved head. ;-) Sorry bout' that!

The girls are having a hard time adapting to Jen's hair loss. Bethany has seen Jen with her shaved head and she said Mommy is still pretty even if she does not have hair. Meg has yet to see Jen's shaved head. She is not ready for the transition yet and she is kind of scared.

We have our reservations made at the hotel in Chicago on a month to month basis and we will be going in for the long in-patient stay on March 24, 2005.

I will write again next week and please remember our family, (especially Jen) on Easter for all four of us will be away from one another. It will be a difficult holiday.

Talk soon,

Rick...

Wednesday, March 9, 2005 4:12 PM CST

Hello everyone.

Jen is resting today and she did very well at her plasmapheresis treatment. She is also getting used to going in public while wearing her mask. Now it will be two weeks of resting and waiting for the 24th.

Even though there is not much to update today I am writing a new journal page because Jennifer requested that I share with you the website of the DailySouthtown Newspaper that wrote an article on Jen. Jen and I were very pleased with the article and it gives a good synopsis to anyone who may be visiting this website and does not know our full story or know us personally. The pictures are not included on the newspaper website but they are in the newpaper. The website is as follows: www.dailysouthtown.com

The story was published on March 9th, 2005 by staff correspondent Alice Hohl. The name of the story is "last Hope."

Also, I apologize if I repeat myself but I could not remember if I shared with all of you that Jen's story is on the homepage of CIDPUSA.org. We are realizing little by little everyday the plan that God has for Jen and why He allowed this to happen to My Little Hero. Jen has touched so many peoples lives, alot of whom we do not even know but we have been contacted by. She is so strong and such an inspiration if I can say so myself. :)

Thanks again for all the prayers, calls, concern, encouragement and love.

Rick...

Tuesday, March 8, 2005 1:08 PM CST

Hi everyone. We are free! :)

We just got the OK that Jen can go home now. The preliminary stem cell count is 18,000,000 which is much higher than the 2,000,000 Jen needs to have the transplant. The doctors are very confident that another day of harvesting is not necessary. We should have the official count of the stem cells later this afternoon.

Jen is doing pretty well today. She had a good night's rest and does not feel as fatigued today. Jen however, is still declining physically so we had to move her plasmapheresis treatment up to tomorrow instead of Thursday to hopefully combat some of the physical weakness. If all goes well Jen will only have three more plasmapheresis treatments and (HOPEFULLY) that will be it FOREVER!! We are not having false hope but that is our best hope, for Jen to go down to one treatment a month or longer would even be a welcomed change.

We do not return to Northwestern again until the 24th of March and then the real challenge begins. Jen will be resting at home until then so calls, e-mails and those who are not one ounce sick are welcome to visit. Jen's immune system is pretty much back to normal. She can live a pretty normal life until the 24th. Jen will have to wear a mask in public places so as not to get sick which would then delay the transplant.

I will write again in several days.

Love from us both,

Rick and Jen

Monday, March 7, 2005 3:06 PM CST

Hello everyone!

We arrived at our hotel last night about 7:00pm. It is a nice place but very old. It dates back to the 1800's.
Jennifer and I slept pretty horribly last night as you could probably imagine. The anticipation of today was a bit overwhelming and the prospect of not knowing the future was intimidating.

We arrived at the hospital at 7:00am today. Jen had her labs drawn around 8:30am and we began her stem cell harvest around 11:30am. Jen's labwork looked excellent. Three days ago Jen's white blood cell count was 1, today it was 26. It should not be higher than 10 but an elevated rebound is not uncommon after the following days of chemo and neupogen.

There was ALOT of paperwork and releases to go through prior to the harvest and they are pretty strict here. I have seen Jen's graft accessed many times and they would not even let me back with her while they accessed her graft. The total time Jen was on the machine was 5 hours and the stem cells looked good. The doctor thinks we may have enough stem cells after today's harvest for the transplant but he wants us to come back tomorrow to harvest more "just in case." Jen will need approximately 2,000,000 stem cells to do the transplant. Jen did pretty well during the harvest. The anxiety of having a different RN access her graft is over and it went well with little pain. Jen is VERY fatigued right now and she has alot of numbness and tingling in her extremities and lips. The apheresis team transfused five times her blood volume (15 litres) so you can understand why she is so fatigued. She is such a tough cookie!

Jen's severe bone pain is very minimal today. She is pretty sore because of it, but she says the soreness is better than the pain. Unfortunately, Jen is physically declining right now, even though she is still getting weekly plasmapheresis. This is because of the neupogen injections that she has been giving herself and because of the lack of the immunosupressant drug therapy that was ceased a couple of weeks ago. Jen is having trouble walking and she gets very tired very quickly. We are at the point of taking the wheel chair with us everywhere we go again just in case she gets to weak to walk.

We attracted alot of attention today. The blood center was full of patients and we had the CBS2 news camera crew there, a producer from CBS2 news and a photographer from the Daily Southtown newspaper. They were with us for about 2 hours. The Daily Southtown newspaper should be out on the 9th. CBS2 news is going to interview us at our home in a few weeks, then they will be back at Northwestern to videotape the stem cell transplant, then they will air the story. Northwestern media relations were with us all day also.

Well, I will probably update in a day or so and then it may be several days without an update unless things develop. Jen will be at home resting until the 24th of March when we come back to Northwestern for the looong in-patient stay. This will be the roughest, most critical and most mentally taxing part of the process.

Jen is in up and down spirits right now but she sends her daily love and thanks to each and everyone of you. We could not do this without the love and support from everyone. Thank you again and again!

Til' next time,

Rick...

Saturday, March 5, 2005 3:05 PM CST

Hello everyone. Well, things have been better for Jen since Wednesday. The nausea and extreme fatigue have subsided pretty much. It still comes and goes but not as often or as severe.

Home health has been here frequently. They are still monitoring Jen's physical ability as well as her lab work. Jen is debilitating physically but it is not going as quickly as we had anticipated. Jen's labwork is dropping very quickly also. As of midday yesterday Jen was officially neutropenic. This means she has no immune system of any kind. We are taking extreme precautions with her here at home. As of yesterday Jen's white blood cell count (white blood cells are your defense against infections) dropped to 1 out of 10. So the critical period has begun.

I wish I had better news about how Jen is feeling today. This morning around 3:00am-4:00am Jen woke up in excruciating pain. She laid in bed and cried, moaned and could not move. I felt like she was a fragile piece of crystal that you did not want to touch. The bone pain that we were forewarned about had begun. This is from the neupogen shots that Jen has been giving herself daily. Even though she is in alot of pain and discomfort this is a good sign. This bone pain means that the stem cells are over producing and becoming hyperactive to get out of her bone marrow so the stem cell harvest can take place next week. Jen is taking some prescribed drugs to helpwith the pain but it only dulls the pain and makes her very fatigued.

Tomorrow we will leave to go stay at a hotel a few blocks from Northwestern. We will probably be down there until at least mid week. There will be many bloodwork up days as well as stem cell harvesting everyday. Jen will not be an inpatient unless complications arise; however, she will be very weak and fatigued from the process everyday.

This past week Jen was on the front page of the Plainfield Sun. It was a three page article on Jen and her disease and what she is going to go through with the stem cell transplant. The response from just that one article has been overwhelming. We have received many e-mails to our personal e-mail address stating how Jen is such an inspiration to others as well as other women contacting her who have been diagnosed with a terminal disease and what a hero Jen is to them. Several of the woman insisted that they meet Jen in the next few months. Jen is getting some much strength to continue moving forward with this procedure because of all of your support and encouragement. THANK YOU ALL!!

We received a call from Northwestern media on Friday that there will be two newspaper photographers and reporters as well as the CBS news camera team there on Monday to interview Jen and film her doing the stem cell harvest. This is exciting but still overwhelming though we have begun to get used to most of the media attention.

I know that you all will keep us in your prayers as the coming week approaches. Please pray for a successful stem cell harvest as well as comfort and strength for Jen. This has begun to take a pretty good mental toll on her and though she realizes that God is using her to be an inspiration and a source of strength for others Jen still needs (alot) of strength herself.

I plan to write again on Monday if no other developments take place before then.

Take care.

Rick...

Wednesday, March 2, 2005 11:03 AM CST

Hello everyone! I am quickly becoming aware how interested everyone is in this website. I am sorry if I do not update it daily but I do not want to bore you. I am sure when we go in for the long in-patient stay there will be daily updates. Thank you for your interest and concern.

Things have been a little better over here. Jen is not having as many bouts with nausea and the dry heaves. She is still not eating alot but she is able to get some food into herself.

Home health has been her regularly to monitor Jen's physical health as well as her lab work. It is amazing to see the lab values change on a daily basis. Jen's monocytes and leukocytes are abnormally low while her white blood cells are abnormally high. Her body is kind of in a state of not knowing what to do due to the chemo. Anytime between tomorrow and Saturday Jen's white blood cells should be down to 0. This will be a very critical and stressful time for Jen. The smallest of bacteria or infections could be life threatening to Jen. So please pray a little extra for us this weekend.

Jen has been doing well with giving herself the daily injections of neupogen as well as taking all the medications that she has to take. There has been very little side effects for her.

The media frienzy is still going on around here. We are going to be featured in the Plainfield and Naperville Sun newspapers today. Jen did an interview with the Daily Southtown newspaper last night and we were notified by phone from Northwestern this morning that they have been contacted by the Star newspaper, CBS and NBC news and a couple other agencies about coming to Northwestern to interview Jen. We were also forewarned that there will probably be newspaper photographers, reporters and news cameramen on our arrival to the hospital Monday morning for the first day of stem cell collection. This is very exciting but very exhausting also. Jen and I both made the comment that if this is what it is like being famous then no thanks! We do feel however that there is a reason why Jen is going through this. We are dumbfounded as to how many lives Jen has touched/changed because of her faith and willpower to get her through this. We also now know that Jen will change even more lives medically speaking. She is so special!!!

Jen ordered some wigs last night. This was a very emotional thing for Jen to do. I am very proud of her about how she is coming around and accepting the fact that her hair loss is inevitable.

We have been getting alot of questions on how the girls are doing. They are adjusting. You have to remember that they have not been shielded from this, they have been going through all of this the past two years also so it is taking a toll. Beth is sweet as ever and adjusting well. Meg is having a difficult time but we are handling it and making progress. Even with all the stress that this situation has brought the girls still have staright A's and are "exceeding grade evel expectations." Awesome and strong are the little ones!

One last thing. The day to be admitted for the long in-patient stay is March 24th. We will be at Northwestern, Feinberg building 15th floor EAST. Please try to come visit before the chemotherapy takes full effect for we will not know how "out of it" Jen will be. Also, just a reminder, please do not come or bring anyone along that may have an illness of any type. We have to protect Jen and the other patients on the floor. The unit can be a scary place and it is a pretty sterile environment so just be forewarned.

I will update again in a few days and thank you all so much for the cards, calls, journal entries, prayers and everything else that you have done for us.

With much love,

Rick and Jen

Sunday, February 27, 2005 6:03 PM CST

We made it home tonight about 5:30pm. Jen is soooo happy to be home and in her own environment.

Jen feels up and down today. She has bouts of nausea and then she feels pretty good.

Today Jen had potassium infused into her because her potassium levels are low. Her blood sugaw was also abnormally high. It was 300 and it should only be 60-100. We are unsure of the reasons for this but when given such high doses of chemotherapy most cells in your body go a little haywire. Jen has lost two of the four pounds that she gained yesterday so the diuretics are working.

The game plan now is to have Jennifer give herself neupogen injections everyday for the next week. This is going to stimulate the stem cells to come out of her bone marrow. Jen will also have a home health nurse come to her everyday to monitor her lab values and her physical status. Jen's lab values will be down to zero by this coming weekend. This is going to be a very crucial and infectious, life threatening period so we are a little nervous about this.

We will go back to Northwestern one week from tonight to begin the stem cell harvesting. This should take 2-5 days. Jen will probably get sick from this as well as very tired. In the coming weeks hair loss will begin as well as physical debilitation. Jen was taken off of her oral immuno-suppressant and with the chemo in her system the doctors anticipate a physical decline. They have assured us not to worry for this will not be permanent if the transplant works. If the trtansplant does not work then we are up against a wall with very few (if any) options as to how to deal with this.

Jen sends her love and thanks as do I. It is amazing how a website can boost someones spirits. Jen looks forward to looking at the site several times a day just to see if there is any new additions.

Talk to you all soon.

Rick...

Saturday, February 26, 2005 6:51 PM CST

Hello again,

Well, Jennifer has been admitted into the hospital for another night. She is very swollen as I stated before and the diuretic does not seem to be working very well.

Jen has been awake for the last hour or so and she is in better spirits as well as feeling a little better physically. Jen still has no desire to drink or eat and that is one of the major stipulations to be released from the hospital. Labs will be drawn in the morning and if they look stable and Jen feels OK we should be home by afternoon. We were also advised that by next weekend Jen's labs will be down to zero, especially her white blood cell count. This is very serious as Jen will not have one cell of defense against infection, so please no visitors. The girls will be with the grandma's so they will not be a risk.

Talk to you all again soon.

P.S. Meghan and Bethany, Mommy sends her love and she misses you very, very much. Daddy loves you very much also!

Saturday, February 26, 2005 2:19 PM CST

Hello to everyone today. Well, we made it through a very emotional day yesterday. It was an emotional day full of fear and excitement. The emotion really hit us when they came in and started the chemotherapy. We kept looking up at this IV bag that looked as harmless as water but it was being infused into Jen to kill things inside her and to make her very sick.

Jen and I slept very little last night. Jen woke up this morning with a low grade headache and the day has gotten worse for her as time has gone on. Jen is very nauseated and has been doing alot of vomiting. She has not eaten or drank anything so far today. She has gained 4 pounds since admittance yesterday. She is so swollen in her hands, face and ankles. The doctor ordered some diuretics but that has not helped thus far. Jen has been under mesna, ativan, benadryl, compazine and phospherous since late morning so she is pretty much in a state of unconsciousness except to vomit.

Dr. Oyama was in this morning and he said she could go home around 6:00pm or 7:00pm tonight but now that does not look hopeful.

I told Jen about all the hits that her website has gotten and I gave her all of the messages from everyone and she was very touched. We both have to admit that this is taking a tremendos emotional toll on both of us, more than we expected, so your continual words of encouragement for Jen are greatly appreciated. She is pretty down right now and at last conversation with her she was very concerned how she is going to handle 4 weeks or more in the hospital under a week or more of intensive chemotherapy if one day was so hard thus far.

The "on-looker" traffic has been pretty non-existant today so that is a good thing. We have been very happy with the hospital and the transplant unit staff. It is still hard to get used to being under such strict isolation and handwashing precautions though, but I guess we should (as well as all of you :) )get used to that for this will be our lives for the next year and a half or so.

I think that is all for now. I hope to update again tomorrow. Jen sends her love and thanks to all of you and so do I.

Rick...

Friday, February 25, 2005 2:05 PM CST

Hello everyone,

Jen is sleeping right now so I snuck off for a few moments. We arrived here today at 9:00am. They Just FINALLY got her first IV started at 1:00pm. Jen is such a hard stick. We were a little stressed for it looked as if IV access would not work, but they got it!

Jen is in good spirits but she is very overwhelmed and stressed. The magnitude of our situation has caught up with her. Everyone on the transplant unit knows why Jen is here and we have had continual "Lookers" since our arrival. The entire transplant unit also had a mandatory inservice on Jen and her CIDP at 1:00pm today. We have also had numerous contacts from many media agencies. We are going to be in the Naperville and Plainfield Sun newspapers on March 2, 2005. NBC and CBS news have been in contact with us and we are going to hear from Discovery Health and The Learning Channels soon. National Geographic is also going to be contacting us as well as Northwestern. We have also signed many media consents and regulations upon our arrival here today.

Right now Jen is going through 5 hours of IV hydration and then she will be heavily medicated and then given her first chemotherapy around 6:00pm tonight. We are both very thankful to be here and have this option for Jen, however; it is bitter sweet. Jen will be very sick by tomorrow evening and today's chemotherapy is the one that will begin her hair loss in the next few weeks.

I hope to update again tomorrow.

Rick...

Thursday, February 24, 2005 9:01 AM CST

Well, today we are preparing for Jennifer's first round of chemotherapy tomorrow. We are both very nervous but excited at the same time. We realize that this is a special gift from God for Jennifer to be going through this and to be able to help others with CIDP whether this stem cell transplant works for her or not. The doctors will learn so much from Jennifer. This is groundbreaking for medicine and CIDP. Jennifer is finally realizing the significance of being the first one in the United States and only the third in the world to have begun the process of this procedure for CIDP. Write to all of you again very soon.

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