This is the place where I post updates about my wife Ann's health issues and hospitalizations as she deals with NMO (i.e Devic's Disease) and the aftermath of her stem cell transplant of July 2011. The most recent updates are at the top. Feel free to post a comment or email me if you would like more information or would like to share a word of encouragement.
10/1/14 Wednesday
For those who still come here :: Ann recently had a recurrence of symptoms of her disease (NMO). She experienced numbness in her good (left) leg - told me that she could not tell if she had shoes on or not. We are both bummed about this as it means that the effects of her stem cell transplant are gone. We visited with her neurologist last week. The doctor has Ann on steroids (to suppress her immune system) and Ann is taking a drug that may help to prevent future recurrences of her disease. With her immune system compromised we are exercising a bit of caution with our church attendance and things like that - last thing she needs is to catch a cold. Please pray for Ann, and for me, as this has been a difficult and depressing time. That said, I think that it is always good to trust the Lord in times like these. Our healing prayers may not be answered but he remains faithful to be present in our pain and our struggles.
5/30/12 Wednesday
Not sure who still checks in here but thought that I might mention that things are back to normal and going well. In April Ann got in a weekly group with five other wheelchaired folks at the Rehab Institute of KC. This has proved to be very encouraging to Ann as she weekly gets rounds of (physical and occupational) therapy as well as the ability to connect with others in group exercises. We both wish you a wonderful summer.
12/3/11 Saturday
Since the last update Ann had a few days with a sore right knee but it is fully recovered now and she is doing well. Ann has two more weeks of outpatient physical therapy left and I think that she has somewhat plateaued in her progress. The improvement to date seems to have all been muscular in nature. That said we are still hopeful to see improvements and healings in her nervous system. We are both enjoying this Christmas season and wish you all the best in this Advent month of peace and hope.
11/15/11 Tuesday
Hard to believe that two weeks have passed since I last updated here. Things have gone well at the Rehab Institute and this is Ann's last week in the day hospital program there. Beginning next week Ann will transition to outpatient therapy three times a week for one month. Ann had a great experience Sunday when she was able to sit in a recliner (in our loft) that she had not sat in for four years. With the holidays upon us we want you all to know how blessed we feel and how thankful we are to have caring friends like you. Thanks so much!
11/1/11 Tuesday
Another week has passed and Ann is feeling stronger than she has in a very long time. She walked (with a walker) today lengths of 144 and 110 feet in physical therapy. This week will be her last week of speech therapy - many folks tell me how much improved her speech is. We are both optimistic about the future and so appreciate friends like you!
10/23/11 Sunday
Ann told me yesterday that she feels stronger when she uses the walker then she did before our Chicago journey. Now that is great news! We had a conference this week with Ann's therapists and discovered that she will probably have day therapy at the Rehab Institute through the end of the year. They are impressed with Ann's discipline and progress. Her physical therapist thinks that Ann may not need the chair around our loft when her therapy is completed. This news is so encouraging. Thanks for stopping by and checking in with us. We appreciate you and your concern for us. Have a great week!
10/16/11 Sunday
Another week has flown by and Ann is stronger today then she was last Sunday. At the beginning of the week I was still assisting her to rise from the bed and by the end of the week she was rising on her own. Ann feels that her strength is about 95% of where it was at the beginning of the summer and feels stronger in some ways than before. We have been out to a few restaurants and traveled to Lawrence, KS earlier today to see Ann's mom and sister. Please hope with us that Ann will get even stronger and greatly surpass where she was when it all started. Thanks for your support and have a great week!
10/9/11 Sunday
Improvement seems to be painstakingly slow right now. Ann's schedule at the Rehab Institute continues daily and she is close to getting back to where she was at the beginning of the summer. We hope to be soon able to attend church and frequent restaurants soon. The wheelchair tech has looked at her chair and has ordered parts - another situation to develop patience (smile). Thanks for thinking about, and praying for, us.
10/1/11 Saturday
Ann has been approved for another month of therapy at the Rehab Institute of KC so her therapy will extend into November. She is progressing nicely but still has weakness when she attempts to stand from a low surface. Her motorized wheelchair broke on Thursday and I fixed it temporarily until the tech folks look at it next Wednesday. Hoping they can do what is needed to do so that Ann can elevate her feet when she sits. Thanks so much for stopping by and for all of your support. We are thankful for your friendship.
9/24/11 Saturday
Ann continues to work hard each day at the Rehab Institute of KC. I drop her off there at 8:30am and pick her up at 4pm. While there Ann gets 4-5 hours of therapy. Ann says that it is very hard work but she is enjoying it and is impressed with the therapists. Ann can now stand and pivot from her wheelchair to most surfaces. She is still not quite where she was when it all began back in July but is pretty close. We are hoping to soon be able to frequent public places like church and restaurants. Hope your week has been a great one. Please email me and let me know how you are doing. We appreciate you.
9/17/11 Saturday
Our first week back has been a great time of destressing. Ann was evaluated by the Rehab Institute of KC of Monday and began their day program on Thursday. She is there from 8:30am until 4pm each weekday until they adjust her to three times a week. She will be a part of the program for a month. Ann has already shown great progress and our hope is that she will exceed her past abilities. Been a great week for me too. Got my dental crown replaced on Monday and I am beginning to experience a bit of normalcy. Thanks so much for your support and for checking in here. We really appreciate you!
9/9/11 Friday
Just a quick note to say that we got home about 5:30 last night! We came home to find that friends from our church stocked our cabinets/refrigerator/freezer and made an adjustment to the height of our bed so that Ann could transfer to it. Many thanks to Alissa, David, Kelly and Scott for such a warm welcome home! You all are the greatest!
Ann begins the day program at the Rehab Institute of KC on Monday and will get therapy there from 8:30am-4pm three times a week for about a month. After that Ann will continue therapy on an out-patient basis. We are looking forward to a great month of recovery and a return to normalcy! Thanks so much for your encouragement and support. Feel free to check back here as I will be sharing more as Ann continues to recover.
9/5/11 Monday
I had an intestinal flu the beginning of last week and I forgot to update here. Hard to believe that we have been in Chicago two months now. Wish I could say that time has flown by. :)
Thankfully we will be heading home early Thursday morning. Ann is off the oxygen now and is still getting a lot of therapy to strengthen her for the trip home. She is able to independently move from her wheelchair to other surfaces using a small wooden transfer-board. Once home Ann will participate in the day program at the Rehab Institute of KC where she will get therapy for about six hours at a day three times a week. After that Ann will continue therapy on an out-patient basis. I say it a lot but I am grateful to you.Thanks for checking in here. Your care, support and prayers are so appreciated.
8/25/11 Thursday
Just a quick note to say that Ann is still progressing well in her journey of recovery. Therapy is still on track but we will be staying in Chicago a week longer than originally projected. This is very good news for us as it will give Ann another week to get stronger and off the oxygen all together. Thanks again for checking in here and for supporting us in so many ways.
8/23/11 Tuesday
Ann is still progressing well in her journey of recovery. She still gets 3+ hours of therapy each day. We are hoping that she will be able to soon stand from a sitting position. Her need for oxygen has been reduced but she still needs it during therapy. We are hoping that we will not need it when we leave (possibly by the end of next week) as it would pose some complications for our trip home. Once home the plan is for Ann to participate in a day program at the Rehab Institute of KC where she will get therapy for about four hours at a day. My health has been okay but I am not carrying my laptop around to help with my back issues - hence I do not have as much opportunity to post here. Thanks so much for checking in here. Your care, support and prayers are so appreciated.
8/17/11 Wednesday
Progress has been good for Ann. She continues to get 3+ hours of therapy each day. After 10 days in rehab she is able to stand a bit but is not able to rise from a seated position yet. Her lungs are better but she still requires oxygen - we are hopeful that she will not need oxygen when she is released from the hospital. I had a few set backs this week - that dental crown came out again and my lower and upper back started hurting again a few days ago. Appreciate you checking in here - your notes and prayers are very encouraging.
8/11/11 Thursday 4:30pm
This has been a very good week. Ann has been improving in all ways. This afternoon she and I spent 90 minutes outside enjoying the great 70 degree Chicago weather. Each day Ann receives and hour of physical, speech and occupational therapy as well as an hour of group exercise. It has been wonderful to see the progress in just a few short days. The staff here at the Rehab Institute are great. We expect to be back home in KC by Labor Day.
8/7/11 Sunday 1:30pm
A few hours ago Ann was moved to the Rehabilitation Hospital of Chicago - it was a great start to our week. The hospital is rated one of the very best in the country and we are both very glad to be here. The room is very comfortable and Ann has a view of the lake. Thank you all for the amazing support that you have offered us with encouraging notes and prayers. We are looking forward to Ann's recovery and to seeing many of you again.
8/6/11 Saturday 9am
The nurse just advised us that a bed has opened up at the rehab hospital and Ann might move there later today. Now that was good news - things were getting a bit depressing around here! I will check in later with more news.
8/5/11 Friday 9am
Ann continues to make progress. Spent some time in her wheelchair yesterday strengthening her abdominal muscles and actually stood three times with the support of the physical therapist - Ann experienced a bit of hyperventilation on the first stand but settled down by the third stand.. rehab is not for cowards. The rehab hospital does not have a private room available so the doctors feel that a shared room will be okay as long as the other person is not medically sick. Consequentially Ann will be moved to the rehab hgospital as soon as a bed opens up - maybe today. Wish you all a great Friday and weekend.
8/4/11 Thursday 9am
The theme these past few days has been hurry up and wait - well mainly wait. Ann sat in her wheelchair for four hours yesterday until she became tired - sitting really taxes the abdominal muscles. Today we are waiting for a room to open up at the rehab hospital. Might have to wait a bit because a private room is needed because of Ann's immune system is still susceptible. I am encouraged and the doctor feels that Ann is making good progress. Ann is getting email via her phone so feel free to send her a note of encouragement.
8/3/11 Wednesday 9am
Ann had a pretty good day yesterday. Her voice and her strength are coming back. She is eating well, receiving no IV fluids and received a bit of physical therapy. The plan is to move Ann to the rehab hospital across the street where she can get the physical therapy needed to make the trip back to Kansas City. Hope you are staying cool.
8/2/11 Tuesday 9am
About 4pm yesterday Ann was moved out of ICU to a "regular" room on the 16th floor. Her voice is still a bit raspy from the vent tube but she is better today than yesterday. Ann told me this morning that her hope is to get into an intensive physical therapy program as soon as possible - that is no surprise to me.. she is amazing. I will keep you posted.
8/1/11 Monday 11:30am
Ann passed the swallow test and is cleared to eat again! As I write Ann is taking some pills along with some water and applesauce. A few of the doctors came by and thought it might be possible for Ann to leave ICU as soon as today. That is great news!
8/1/11 Monday 8am
Ann is a bit loopy this morning from the drug they gave her around 3am. Hopefully the effects will soon wear off and the therapists will be able to perform a swallow test to determine that it is safe for her to each solid food. I am hopeful that this week will be one of great recovery. Should know more after the doctors make their rounds this morning.
7/31/11 Sunday 4pm
Second trial began at 2:30pm and at 3:30pm the decision was made to take the tube out. The tube is out and Ann is now breathing on her own! Words can not adequately express my gratitude to God, the medical staff at Northwestern and all of you who supported us during this difficult time with supportive notes and prayers!
7/31/11 Sunday 11am
Almost there. Ann's oxygen stats breathing on her own were good but the docs feel that there is still fluid around the lungs and she is not able to breathe deeply yet. They will try to drain more fluid off and try the breathing trial again this afternoon.
7/31/11 Sunday 8am
Goods news this morning! The doctors feel that Ann has turned a bit of a corner and they have already reduced the ventilator stats this morning. If she maintains her breathing at this level they will take her off and see how she does breathing through the tube. If that goes well they will remove the tube. I am very glad that Ann is breathing better. On a slightly depressing note I hurt my back yesterday and have been in a lot of pain - been awake since 3am. Struggled to make it in this morning but I am oh so glad that I did. I will post again later in the day to report on Ann's progress. Thanks so much for your prayerful support.
7/30/11 Saturday 7:30am
The night nurse said that Ann had a very restful night and woke early wanting to watch something on TV - a good sign in my thinking. Last night they had to back off and change the ventilator settings back to what they were in the morning but today they plan to set them back again. Ann's stats are looking good this morning and I am hopeful or maybe in denial. Either way I feel that mercy is new this morning for us and God is answering our prayers.
7/29/11 Friday 5pm
Progress has been slow today but it is slightly better. Ann's ventilator settings have been lowered a bit and she is doing a little more of the breathing. We are hoping that she will be able to sustain these new levels and we are hoping she will experience more peace. My friend Jim (a minister from Texas) was passing through Chicago and we were able to spend several hours together over lunch - it was very encouraging as we talked and when he prayed with Ann. Hoping for a peaceful night of rest for Ann.
7/29/11 Friday 7:30am
Sometimes the status quo seems the hardest hurdle to surmount. Things have not changed since yesterday morning. Yesterday they turned the ventilator off for about 10 minutes looking to see how the stats would look when Ann breathed on her own - needless to say they felt that she still needed assistance. It was a difficult day for Ann yesterday as she tried many times to communicate - I felt her frustration and was frustrated myself.
The doctors this morning seem to yet believe that reducing the fluids in her body will help her lungs even though they have not been able to diagnose what is causing the fluid build up. Her white count doubled again yesterday so her body is definitely fighting whatever she has. You can probably sense my frustration in my words. Even so I am hoping that today will bring Ann one day closer to having the tube removed. Thanks so much for your encouraging notes - I appreciate hearing from you. And thanks for praying!
7/28/11 Thursday 7:30am
Came in this morning to the news that Ann's immune system is back in force (yay! the stem cell therapy was successful) and fighting the bug (doctors are still unsure what that bug is). This is really good news! Today they will try to begin to wean Ann off the ventilator by lowering the percentage of oxygen that she receives from the machine. Hope is that she will tolerate the lower levels. Ann's sister Kathy arrived yesterday and Mary Jo will be heading back to Michigan later today. I am so thankful for their support and for your support.
7/27/11 Wednesday 7am
I planned to update Ann's status yesterday afternoon but things got a bit crazy. Mid-morning Ann's heart started racing. The nurse really got my attention when he requested that the crash cart be brought in - it was pretty scary for a few hours as the medical staff tried to get Ann's heart settled own. By late afternoon Ann was resting well - it was a bizarre day.
On the positive side Mary Jo, Ann's friend of 40+ years, drove3+ hours from Michigan to be by Ann's bedside and help. Also on the scene for the day was Todd, a friend from our Monday morning men's group, who flew in to support me - I was overwhelmed when he came. Lastly, Ann's sister Kathy is flying in today and will stay until Sunday. This has all been a huge blessing and I am so thankful for the people in our lives.
This morning Ann is resting well and catching up on some needed sleep. She still is in the ICU, on a respirator and is fed via a tube. The nurse told us that they are treating Ann for pneumonia. Please continue to pray.
7/26/11 Tuesday 7am
Got a call from the ICU doctor about 10:30 last night saying that Ann was struggling to breathe and they wanted to put her on a breathing tube and ventilator. Told her I could be there in a few minutes and she agreed to wait for me to come. Once there I was able to communicate with Ann and pray with her. We both felt that the ventilator was the best option and surgery soon commenced. By 11:30 the tube was in and Ann was breathing better. I got a few hours sleep at the hotel and was back here by 6am where I will be consulting with the doctors when they make their rounds. I am thankful that so many of you are praying for us.
7/25/11 Monday 4:40pm
A rough day for Ann but things are slightly better. Since coming to ICU she has been wearing an oxygen mask that covers her mouth and nose. It is quite uncomfortable but the extra oxygen seems to be helping. She started at 100%, is doing well at 50% and will be adjusted down to 30% strength. The hope is that she will not need it tomorrow.
7/25/11 Monday 10am
Ann has moved to the intensive care unit. Her breathing was more belabored this morning and we all felt she would get better care there where the fluid around her lungs could be monitored better. The doctors are thinking that in a day or so she should turn the corner when the stem cell therapy starts kicking in and her body is better able to fight off whatever is attacking it. Keep praying and I will keep you posted.
7/24/11 Sunday 6pm
Ann's breathing is better but is still labored. She had a pretty quiet afternoon and slept through most of it except when doctors and nurses came. Is now eating supper in her wheelchair - struggling a bit taking in both food via her mouth and oxygen via her nose.
7/24/11 Sunday
Yesterday our children (Matt and Susie) and grandchildren (Jordan and Malia) traveled by car overnight from Kansas City to be here with their mom on her birthday. Ann really enjoyed their presence. It was a very special gift and a joyous time to be together.
About 8am today Ann had a bit of an episode where she had trouble breathing. She labors still to breathe but her breathing is better. The doctors feel that she continues to have some fluid retention in her chest that keeps her from being able to breathe deeply. Specialists are continuing to monitor her progress. Throughout out this I am seeing how complex our bodies really are as I see the effects of blood platelets and other fluids on her breathing and blood pressure. Thank you for checking in and for praying.
7/21/11 Thursday
Ann has had a few rough days since Monday. Been weak, nauseous, ran a fever and is battling fluid retention. The doctors say that it is not unexpected and they are treating each malady. Even so we feel blessed to be in a place where the care is so excellent. Special kudos to Doctor Burt and Amy, the nurse practitioner that visits 2-3 times a day and addresses our concerns - and to you all who pray.
7/18/11 Monday
We were both rejoicing around 2:18pm today when the stem cell transplant was completed. The transplant began as Jean, a hospital chaplain, said a blessing over Ann, the stem cells (red stuff pictured on the right) and everyone associated with the process. It was a very beautiful time. Heard today that Ann has an infection but the medical staff is up on it and treating her for it. One more dose of chemo (the less potent variety) tomorrow. After that the focus will be on maintaining and improving. We are so thankful to God for this experience - and thankful for you too.
7/17/11 Sunday
Quiet day today. Ann has been very nauseous and has thankfully slept most of the day. No physical therapy today as Ann has remained in bed all day. The nurse says the transplant pre-meds will keep her pretty sedated as well. Hopefully she will be able to keep supper down when it arrives. We are both looking forward to the days ahead.
7/16/11 Saturday
Ann has pretty much been wiped out the last few days. The effects of the chemo drugs combined with the antihistamines (and other drugs) has caught up with Ann. It is not all that bad though because she is able to rest. She has been doing physical (standing/walking w/walker) and occupational (upper body) therapy every day and seems to be staying strong. Monday will be a huge day for us. After almost nine months of waiting Ann will be getting a new immune system via the stem cell transplant. We are so blessed and thankful for this opportunity and for the support of friends like you.
7/14/11 Thursday
Ann is tolerating the chemo and all of the other drugs well. Little by little her immune system is ebbing and making way for the new one. Physical therapy was here yesterday and Ann did a bit of walking/exercising. The atmosphere here is hopeful. The crown that fell out of my mouth on Sunday was replaced yesterday and I was happy to find an in-network dentist so fast and so close. Mary Jo, Ann's longtime friend and encourager, is visiting from Michigan and should be here very soon. Thanks much for checking in!
7/12/11 Tuesday
We arrived in Chicago yesterday afternoon without any problems. I did lose a dental crown on the ride here but have an appointment to get it fixed tomorrow afternoon. Even so, logistics were so much better the second time around. Ann checked into the hospital today, had two ports surgically inserted this morning (one for the plasmapheresis and one for ongoing chemo) and one removed this afternoon. Things are going well. Should be an interesting week in the windy city. Hope things are well with you.
7/9/11 Saturday
Ann and I will be heading to Chicago tomorrow and should arrive on Monday. On Tuesday she will begin the stem cell transplant process when they remove antibodies from her blood using plasmapheresis. The following six days Ann will receive a chemotherapy treatment each day with the goal of suppressing her immune system and getting it ready for a brand new one. I will try to keep you posted in the days ahead.
6/30/11 Thursday
Hard to believe that it has been two weeks ago that Ann had her stem cells harvested. We have enjoyed being home these past few weeks. Last week the chemo aftereffects came in the form of hair loss. Also starting last week was a bit of physical therapy - unfortunately the PT did something to Ann's back.. so she eased off the PT a bit and her backing is feeling a bit better. A major wheelchair part was ordered last week and we are hoping to have it installed/tested before we head back. We plan to leave for the windy city a week from this weekend. Thanks for checking in. Hope your summer is off to a great start!
6/17/11 Friday
Just got the results and 14 million stems cells were harvested! Consequentially the catheter will be removed soon and we will be spending the afternoon packing our stuff for our trip home tomorrow! It is a beautiful day in Chicago so we will probably try to catch lunch at a sidewalk cafe on our last afternoon. Hope to see some of you before we head back to Chicago in three weeks for the transplant. Have a great weekend!
6/16/11 Thursday PM
Long day today with a few procedural problems that caused the harvest and results to be delayed. Ann is getting a platelet transplant as I write this to prepare for tomorrow when we will be back at the hospital @ 10:30am to find out the results. If sufficient stem cells were collected then the catheter will be removed and Ann will be discharged. If not then more will have to be collected. Thanks so much for the thoughts and prayers.
6/16/11 Thursday AM
It is a big day today for us. We are at Northwestern and a temporary catheter is now being put in place that will used to harvest millions of stem cells from Ann’s blood. If they are unable to get enough cells today they will continue through the weekend until they do. We look forward to heading back home to Kansas City soon. Thanks so much for your support and prayers. We continue to feel their affect on our lives.
6/12/11 Sunday
Ann has started the neupogen injection therapy and has observed that the needle is bigger than advertised and it is difficult to do two of them in a row at 8am each day. Other than that Ann seems to be tolerating the neupogen so far and has not needed pain meds. Things are going well and we look forward to heading home next weekend after the stem cell harvest. Thanks all for checking in on us. We so appreciate you.
6/10/11 Friday
Ann has had some nausea and weakness this week from the chemo but she is doing pretty good today. After today she will be pretty much confined to our hotel room (because of susceptibility to infection) until the stem cell harvest next Thursday. The neupogen injection therapy begins tomorrow so please pray that it goes well and Ann does not have a lot of bone (or other sorts of) pain as her stem cells get ready for harvest. Wish you all the best!
6/7/11 Tuesday
Ann completed her day of chemo yesterday and is due to check out of the hospital later today. The procedure was flawless and Ann did not experience any major side effects except a headache. We are both very impressed with the hospital, doctors, nurses and other staff. The remainder of the week is pretty slow with just one lab appointment. The neupogen injection therapy begins on Saturday. Thanks all for praying.
6/4/11 Saturday
This past week has been a bit slow. Ann had appointments on several days and all of her tests came out very good. We have acclimated to Chicago.. the nicer weather has helped.. and even the wheelchair impassable roads around our hotel are scheduled to be paved next week. On Monday the real stuff will begin as Ann checks into the hospital for a day to get the nasty chemo. From there she will start a twice daily injection therapy that will begin to stimulate the stem cells and prepare them for harvest the next week. The nurse says that the therapy could be a bit painful on her bones and muscles. So prayers are appreciated for the aftereffects of the chemo and injection therapies. We so appreciate you all and your love for us. We feel your prayers and know that God is helping us.
5/28/11 Saturday
We arrived in Chicago on Sunday. Our first few days were pretty stressful - traveling and hotel life with a wheelchair can be very difficult. A few obstacles we had to overcome when we arrived were dug-up (wheelchair impassible) streets, lack of grab bars in the shower and a few wheelchair mishaps - add to that rainy and unseasonably cold weather as well as no heat in the hotel (they can only run A/C or heat). I think that we have both felt pretty stretched and stressed at the beginning of the week.
That said, I feel like the week ended very positive. We found a Trader Joes yesterday and were able find some food to cook in our suite. Should save us some $$. Ann's test and interviews all went well. We are moving forward with the transplant. Next week we have a few more tests and doc appointments. The following week Ann will be in the hospital overnight for chemo then will be on a Rx that will stimulate her stem cells and get them ready to be harvested the following week.
Not sure what I can add except to say that we have felt your prayers this week. Thank you for all the prayers and other supporting words that many of you have offered to us. I'll keep you posted as we know more.
5/11/11 Wednesday
Ann and I will be soon heading to downtown Chicago where Ann will be a part of the stem cell trial at Northwestern. We will be there about a month for the stem cell harvest, back home for a few weeks, then back to Chicago for a month or more for the transplant and follow-up. We have so felt your prayers these past months and have a confidence knowing that you will be praying for us during this time. Please email me if you want more details.
5/4/11 Wednesday
This week Ann heard that insurance has approved the transplant. We are overjoyed at the news and are now waiting to hear from Northwestern concerning dates and schedules. We are so thankful for those of you who have prayed - those prayers have sustained us and helped greatly in this process. Please continue to pray for us, the doctors and all concerned with the transplant.
3/10/11 Thursday
We are back in Kansas City and happy to report that all systems are go. The doctors have accepted Ann into the stem cell transplant trial. The next step is to get approval from our insurance company. The nurse told us that this can be a long process of denials and appeals. So thank you for praying and please continue to do so.
3/8/11 Tuesday
We made it out here with flying colors and had a night and a day to relax and spend with Ann's college roommate and her husband. Ann is having her first brain and spine MRI as I write this. After that she has lab work and an eye doc appt this afternoon. Today is nice because the tests are walking distance from the hotel. Tomorrow Ann has more doctor appointments about 4 miles away. We will be heading home on Thursday. Thanks all for the prayers.
2/4/11 Friday
Looks like we will be in Chicago for 5 days the first week of March for interviews and tests by doctors and staff at Northwestern to see if Ann is a match for stem cell surgery. We are excited. Please pray for traveling mercies and good weather.
1/14/11 Friday
Hope your new year is off to a great start. Ann got a call yesterday from Northwestern University (see November status) and they are wanting us to come to Chicago (about a 9-10 hour drive) for a few days of examinations next month. From those exams and interviews they will determine if Ann is eligible for the stem cell trial. We remain guardedly optimistic and hopeful yet we are determined to take one step at a time. Please pray for us, the doctors and all involved in this.
11/29/10 Monday
Ann is being considered for a Stem cell study at Northwestern University close to Chicago. If accepted we would temporarily relocate to that area for about three months. The study has had excellent results with NMO patients. Saw a video where one person who participated was paralyzed and is now riding a bike. We are hopeful, yet guarded, in our expectations. Please think of us when you pray. Thanks and have a great Christmas season.
10/29/10 Friday
Apart from the all-day marathon at the hospital, chemo went well on 10/18. The next session will be this Monday 11/1. Appreciate you all checking in with us and praying for us.
10/17/10 Sunday
Things have gone very well since my last update. Ann's mobility in our new area is simply wonderful. She has access to the City Market, a hair styling salon, a small grocery store, a coffee shop and several nice restaurants. Lately we have been walking/rolling to the patio of a restaurant that features farm fresh food.. it has been a great time in KC weather-wise to frequent outdoor venues. Ann has another scheduled chemo treatment tomorrow to keep the NMO in check. If you think of us please remember us in your prayers. Hope your days are well and Autumn is treating your kindly. Thanks for checking in here!
09/04/10 Saturday
It has been 4 months since I have posted here and so much has happened. Here is the summer news in brief: Ann's health has been very stable. We sold our house in the suburbs and bought a loft in downtown Kansas City, Missouri. Most of our summer has been spent packing, moving and settling in. We feel blessed to have sold our place so quickly (2 weeks) in this rough market. The new place is very wheelchair friendly and Ann gets out a bit by herself to the hair salon, the farmer's market, the coffee shop and other places in the area. We are not planning to go to Mayo - we are at peace about the medical care that Ann is receiving at the University of Kansas Medical Center. Thank you for checking in here and for praying.
05/10/10 Monday
I write this sitting in the admissions center at the hospital where Ann will receive the second dose of a chemo drug called Rituxan. Two weeks ago we sat here waiting for Ann's first installment of this round which went rally well. Ann gets two rounds of Rituxan a year which means that she checks in for a daily hospital stay four times a year. I am glad that this drug is available.. it seems to have kept NMO at bay for a few years now. Apart from a short-lived infection last week Ann's health has been stable. She still battles with constant neurological pain (kind of like a really bad sunburn) that occasionally escalates into something really hurtful. Ann is still on the waiting list for the Mayo clinic in Florida.. they think the appointment will be in July. Thanks for checking in here - I so appreciate your thoughts and prayers.
04/14/10 Wednesday
Life is a bit status quo these days. Ann's health has been (relatively speaking) good. The weather has been nice here in Kansas City. Ann is scheduled for another round of Rituxin (chemo) treatments on April 26 and May 10. We are thankful that these treatments seem to be helping. Thanks for checking in with us. Hope your Spring is a blessed one.
03/13/10 Saturday
Ann finished outpatient physical therapy a week ago and is feeling pretty good. Ann experienced some increased numbness this week and had her blood tested to evaluate treatment for it. Ann is still on the waiting list for an appointment at Mayo and hoping to get a call from them soon. I posted a video today
here that describes the disease a bit from another patients perspective. Hope all is going well with you all. Thanks for checking in!
01/24/10 Sunday
Praise the Lord! Ann finally got rid of that infection and she is now transitioning from home health Physical Therapy to outpatient PT at a local hospital where they will work on improving Ann's strength in her arms and legs. Ann saw a doctor about the kidney stones and he felt that the stones were not large enough to be of concern. So all in all things are much better. We continue to dialog about the best treatment for this disease and are pursuing an analysis at the Mayo Clinic in Jacksonville, Florida. We would appreciate prayer for this.. we should be hearing back from Mayo this week. Thanks so much for your care, prayer and concern.
12/28/09 Monday
The past 6 weeks have been a bit trying for us. Ann developed an infection in early November and had to be hospitalized in November and December to install a pic-line so that she could receive two different regimens of the same antibiotic (second regimen twice the strength of the first). Consequently Ann has been getting home nursing, physical and occupational therapy visits. We visit a doc the end of January to consider treatment alternatives for the kidney stones they discovered during tests at the hospital. Not sure if many check in here anymore.. let me know if you do.. and please pray for us.
11/16/09 Monday
Ann is finishing up her second biannual Rituxan (chemo) treatment as I write. These treatments have gone well and Ann's health is somewhat stable these days. Ann finished up physical therapy a few weeks ago and now does a group exercise class twice a week. I have been having shoulder pains and am getting evaluated for physical therapy this week.. sigh. We are still hoping to travel south next month. Hope you all have a Happy Thanksgiving. Thanks for caring and praying.
10/5/09 Monday
We are doing okay these days. Ann is at physical therapy as I write.. she is still working on being able to stand.. can do 10 minutes.. seems to be helping with her core strength.. she can do about 50 feet three times a day with a walker. We are planning to go south for an extended vacation this winter but do not have anything specific yet. Hope you all are well. Thanks for stopping by and for praying.
8/22/09 Saturday
We have had a pretty good summer.. the weather here in KC has been great! Ann has begun another round of physical therapy this week with the hopes of strengthening her legs so that she can stand a bit longer and be able to negotiate the transfers in and out of her motorized wheelchair better. Ann was diagnosed this summer with osteoporosis caused by all of the steroids she has been on.. she will begin an injection therapy to keep her bones from further damage. Thanks for stopping by and for praying.
7/5/09 Sunday
We have had a pretty good summer so far. When the heat is high we generally stay inside because of the way that elevated temps affect Ann. Ann will be seeing a new doctor this month because of the effect that prolonged steroids have had on her bones. Thanks much for checking in with us and for supporting us in prayer and other ways.
5/29/09 Friday
Ann's chemo on 5/18 went well with no adverse affects.. round two is on Monday.. we do not expect any problems. Ann rolled over to the grocery store with her friend Laurie yesterday and is building up courage to navigate the streets and be a bit more independent. We are continuing to give thanks for the many blessings of our lives.. primary to those blessings is friends like you.. we so appreciate your concern and prayer support.
4/25/09 Saturday
We finally did that road trip we planned on for last February. Instead of San Antonio we are doing Branson and Little Rock. Ann has been getting stronger thanks to the recumbent bicycle that she "rides" 30 minutes each day. Arthritus has been causing some elevated pain levels for me.. plan to check out a rheumatologist when we are back from vacation. Ann's next (semi-annual) chemo treatments are scheduled for next month. Thanks so much for checking in here. We so appreciate the concern and the prayers.
3/19/09 Thursday
Been a roller coaster of late.. Ann's shoulder was hurting so she cut physical therapy short a week because the standing exacerbated the pain in her shoulder. To compensate Ann increased her cycling on her recumbent bike to about every day - good results as Ann seems to be able to stand with less shaking. We are enjoying the warmer weather and find that we get out a bit more. Thx for stopping by.
2/26/09 Thursday
Ann had to up her steroids this week because she experienced some numbness in her left leg. Hopefully this is just a small blip on her recovery. We are committing to
fasting sorrow and embracing joy during this Lenten season.. please join us as we do.
2/2/09 Monday
It has been a few months plus since I have posted anything here.. I wonder if anyone is still reading.. please
email me if you are. Ann is on her third month of physical therapy - I so admire her commitment to strengthening her body.. it has been a very slow and difficult process. We are hoping that Ann will be strong enough to make a road trip to San Antonio next month. The chemo treatment seems to be doing it's stuff.. this week Ann takes another step to rid herself of her daily steroid RX.. last month's steroid reduction went well. Thanks to all who pray for us.. we have really been needing your prayers.
11/22/08 Saturday
Ann is still doing well post chemo. She is a bit frustrated with the loss of strength since the injury to her shoulder in August. After Thanksgiving her physical therapy will ramp up to three times a week.. she is doing two a week now. We are hoping that her strength will return to her legs (quads specifically) with more exercise.
11/18/08 Tuesday
Yesterday's treatment went very well .. even shorter than last time.. and Ann is feeling well - PtL! The next chemo treatment is in six months. We are so appreciative of all who pray and check in on us!
11/03/08 Monday
Thanks all for praying! The treatment went very well today and Ann is now home and feeling well - PtL! The next chemo treatment is scheduled for 11/17.
10/27/08 Monday
Ann's chemo treatment was scheduled for today but has been postponed to next Monday (11/3) due to a bladder infection. She will then have a second treatment two weeks after that. We remain hopeful.. I know that Ann is looking forward to being off the daily dose of steroids. Please keep praying.
10/18/08 Saturday
Thursday's doctor visit went well. The doctor informed us that the drug Ann has been taking since May has started to cause some liver damage.. consequentially she immediately discontinued that drug.. damage is not permanent though. She discussed the Rituximab chemo drug with us and how she has personally seen it work. After some discussion Ann and I both felt a peace about going forward with Rituximab. Practically this will mean that, every six months, Ann will receive two 4 hour chemo treatments two weeks apart. Her first treatment will begin in the next two weeks. Thanks again for all the concerns and prayers offered.
10/15/08 Wednesday
Ann has another doctor's appointment tomorrow. We suspect that the doctor wants to talk to us about changing the direction of her treatment because Ann has been experiencing greater numbness below her waist. The treatment that we suspect that she will recommend is a chemotherapy drug called Rituximab. It is a horrible alternative to have to consider. Here are a few excerpts from
a study of folks with Neuromyelitis Optica:
Out of 25 patients with the condition, 20 showed improvement or stabilization of disability with a median of 19 months of follow-up, reported Anu Jacob, M.D., of the Walton Centre, and colleagues online in Archives of Neurology.
...
Because of the rapid progression, immunotherapies are usually used as first-line treatment. Nevertheless, "it is unclear whether rituximab should be the first treatment for neuromyelitis optica," Dr. Jacob and colleagues wrote. Five patients had infections and two died, possibly as a result of the treatment, which selectively destroys antibody-producing CD20-positive B cells.
...
Seven patients discontinued treatment, including two who died, two with relapses, and three for other reasons. Of the remaining 18, all said they planned to continue with rituximab at the last follow-up, although three had not received the drug during the preceding six months.
A friend recapped it this way “It seems like the published effects of the drugs might happen, but the side effects are completely dependable.” After reading about the drug and the study Ann and I are not comfortable with the side effects of this drug. We hope that there are other options available. Ann, her doctor and I need a big dose of heavenly wisdom - and we could use some healing as well. We covet your prayers at this time. We are thankful to have friends like you.
10/7/08 Tuesday
I have been under the weather for the past 3 weeks with the flu and congestion. My left elbow got infected last week and swelled up with a golf ball size painful cyst. I am beginning to feel bit better after seeing a doctor and taking antibiotics. Ann's left leg was feeling a bit number yesterday so she contacted the doctor and is waiting for a reply. Usually the doctor ups the steroids when this happens.. just part of living with NMO. Not much more new going on. Thanks for checking in and for praying.
9/11/08 Thursday
Not much new with Ann's health. Her shoulder seems to be better and we are in a bit of a holding pattern. We have considered moving to a place where we could receive support from health aides but don't feel that we are ready for that. We are looking at ways that we can stay in our house and are investigating ways to do that and have the support that we need -
email me if you have any creative ideas about this.
8/25/08 Monday
I hurt my right knee about 10 days ago so Ann had to get along without the assistance. It has been difficult being somewhat homebound but things are better these days and we are hoping to get out towards the end of the week. Hope all is well at your place. Hard to believe that the grandkids are back in school already!
8/10/08 Sunday
These have been a few rough few weeks. Ann injured her left arm/shoulder muscle and has been having difficulty transferring from her wheelchair to other surfaces like the bed and the toilet. She had to suspend her physical therapy and most other activity that would further exacerbate the problem. The doctor said that it was inflammation and gave her an anti-inflammatory Rx. Yesterday I started physically assisting in the transfer in hopes that she would be able to heal faster. Please remember us in prayer.
7/16/08 Wednesday
Thought that I would jot down a few notes as it has been over a month since I last posted. Ann is still fairly stable and is finishing up her last week (we think) of physical therapy. I am re-entering retirement in August and will be able to much more spend time with Ann. It is a bittersweet time for us - happy to be able to be together but sad for the reasons. Hope all is well with everyone and you are having a great summer!
6/9/08 Monday
It looks like this week will be Ann's last one of therapy in (3x a week) hospital rehab. I think that she will begin outpatient rehab next week. Ann is walking some with a walker around the house and we hope that she will be able to do that more as spring turns to summer. Things have stabilized around here and I think that I will be posting a bit less to this place - but feel free to check in from time to time. Ann and I so appreciate the care and concern that you all have shown to us. Thank you for praying. Feel free to send me an occasional email if you want to check in.
5/31/08 Saturday
Another month bites the dust today and we are settling in for the summer. Ann's therapy has been going well and she now transfers from her wheelchair to our loveseat using a walker.. progress is progress. We had a conversation this week about the future after Ann read all of the depressing bad news (paralysis and death) about her new diagnosis online. We talked about how dark the future is when this information is processed with our heads and how important it is to process the future with our hearts. To be sure I'm not talking about denial and delusion - we are very cognizant about what "can" happen but we are also aware of the fact that we do not know what "will" happen. We are developing hope in our hearts as we press forward with the new diagnosis knowing that a life well lived is a life lived from the heart and not the head.
5/23/08 Friday
We met with Ann's neurologist yesterday afternoon and were shocked to learn that Ann has now been diagnosed by the Mayo Clinic with Neuromyelitis Optica (NMO). Here is a description of it:
This is an uncommon disease syndrome of the central nervous system that affects the optic nerves and spinal cord. Individuals with NMO develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren't yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord.
We are still processing through this diagnosis which seems to be a bit more severe than MS. Please continue to pray with us as Ann continues physical therapy and begins a new series of drug treatments for NMO. We are thankful for each of you.
5/16/08 Friday
This past week was a good one - mother's day was especially great. Ann is negotiating around the house nicely.. she can sit on the loveseat now since our son raised it with some landscaping stones. She had a rehab evaluation on Tuesday and began a hospital day-program today where she will receive speech, occupational and physical therapy 3 times a week from 8am-2pm. We are seeing a different doctor this afternoon to discuss a natural-medicine diagnosis that may involve some different kinds of tests. My ankles seem to be a bit better since I am not walking as much as I was. We are so thankful for the many many of you that stop by here, pray for us and send notes of encouragement. I will try to update this at the end of each week to keep you informed about Ann's progress.
5/9/08 Friday
After 38 days, Ann was released from the hospital yesterday - PtL.. just in time for Mothers Day!! We will have a few days to rest and reflect then on Tuesday it is back to therapy at a local hospital day-program.. 8am-2pm 3 days a week. We hope to begin researching alternative next week as well.
5/6/08 Tuesday
The day pass on Saturday was really great - we had a very nice lunch at a local restaurant then Ann spent the afternoon at home relaxing on the deck and just enjoying "being home". Yesterday another brain MRI was done.. we should probably know the results before Ann leaves the hospital on Thursday.
5/3/08 Saturday
Looks like Ann will be released from the hospital next Thursday. Today the doctor has given her a
day pass that we will be using to have lunch. It is a nice day and I am looking forward to a day that is a bit more "normal" :)
5/1/08 Thursday
Ann's rehab is progressing well and it looks like she will be leaving the hospital next week. Once out she will transition to a day hospital where she will receive physical therapy from 8am-2pm three days a week.
We (finally) had a discussion with her neurologist last night about 7:30.. it was a difficult and extremely disheartening time. The doctor told us that none of the tests and procedures that Ann had been through has pointed to a clear medical diagnosis. Consequently she is asking us to consider a biopsy of Ann's brain tissue. This is creating concern for both of us because of Ann's very negative reactions to her past two surgeries. We are also concerned because of the possibility that the biopsy will not extract the diseased cells and they would not know any more than they know now. They could begin treatment soon with chemotherapy but the chemo is a very strong substance and could internally damage Ann's body.
As you can see there doesn't seem to be a magic medical solution. We are not readily open to the solutions presented to us and are hoping to find an alternative path in the coming month. I am reminded of the scripture in Isaiah that instructs us to wait on the Lord and that the main part of waiting is prayer.. to that end we ask you to wait with us.
4/25/08 Friday
Ann continues to recover in rehab and is working on issues around standing and transferring to and from her wheelchair. Doctors are unsure of what future treatment will look like - no news there for now. I have had increased pain in my left foot/ankle (kept me up for hours last night) and will be significantly reducing my activity over the next few days to try to quiet down the pain.
4/20/08 Sunday
Our weekend has been pretty good. The rehab unit schedules 90 minutes of therapy on Saturdays and takes a break on Sunday. This week we are expecting to hear more about the test results, an alternate diagnosis and potential future tests. Our thinking is to get another medical opinion.. anybody know any neurological experts?
4/1/08 Friday
Ann's progress has been very good this week. She is getting back to where she was before the operation. Her strength and coordination is returning to her right side - about 85% for her speech, 75% for her arm/hand, and less for her leg.. they are hoping
baclofen pump adjustments will help. She is continuing 3 hours of therapy each day and finds it to be pretty tiring. The doctors think that she will be in the rehab unit another two weeks. As for me.. I have had a lot of ankle/foot pain this week.. had them
xrayed today and saw new bone spurs.. just need to keep off them for a few more days and I think the inflammation will abate - hopefully :)
4/15/08 Tuesday
Ann had a pretty quiet day.. no news about any of the tests. She was transferred back to the hospital's rehab unit where she will get 3 hours a day of occupational, physical and speech therapy. Her voice and speech is improving daily.
4/14/08 Monday
Ann had a spinal tap this morning and couldn't eat until about 11am - that Einstein Bros
poppyseed bagel I brought her tasted pretty good! Doctors paraded through her room with more questions but had no answers. Hopefully they will have some feedback from the spinal tap. Ann is scheduled to be transferred to the rehab unit and I plan to go to work tomorrow. I'll update if we get any information about the spinal tap results.
4/11/08 Friday
This has been a very difficult week. Ann was transferred out of the rehab unit and back into the acute unit so that she could receive IV steroids which she began Wednesday and will complete Sunday. Ann's progress with regaining her speech and using her right hand has been slow but progress is progress. Her neurologist threw us a
curveball yesterday and told us that Ann may have been misdiagnosed with MS (6 years ago). They are currently running tests to reevaluate her diagnosis and may need to biopsy her brain to know for sure. Please cry out to God for us.. asking for prayer seems an
insuffient thing to say when such important decisions are needing to be made. Thank you so much for your love, care and prayers for Ann and for me.
4/6/08 Sunday
Ann began to have problems yesterday with speech and with coordination of her right hand. The doctors are evaluating. Please pray for healing for Ann and wisdom for the doctors - and strength and wisdom for me.
4/2/08 Wednesday
Ann’s surgery yesterday went well and she is recovery at the hospital today. On Friday she is scheduled to be transferred to the rehab unit at the hospital where she will stay for the next week or two. At rehab they will be able to adjust the pump to fit to Ann’s lifestyle as well as getting her more therapy. Thank you all for your love and prayers.
3/24/08 Monday
Thanks everyone for praying. Saw the surgeon today and Ann’s drug pump surgery is scheduled for next week on Tuesday. Please keep praying.
2/29/08 Friday
Ann’s chemotherapy is scheduled for Monday. Because it is “in hospital” these sessions seem to take longer than they should and are often filled with stress. Please pray.
2/21/08 Thursday
Thanks for praying for Ann. We had a very long day at the hospital yesterday and they kept her overnight. I spoke with Ann this morning and she is doing well. The test was successful and we will be seeing a surgeon to schedule the drug pump surgery. Please pray for timing in this as the doctor would like the surgery scheduled at least two weeks before Ann’s next chemotherapy treatment which is due in March.
2/19/08 Tuesday
Please pray for my wife Ann. Tomorrow she is being tested at
KU Med Center to see if a
baclofen pump would help her to receive a smaller dosage of this muscle relaxant drug that she takes. The current level of this drug makes her very drowsy. The idea is that an internal pump will deliver the same or better results with a significantly lower dosage. I am not sure what to ask you to pray for but trust the Holy Spirit will direct your prayers. Thanks so much for praying.
Hattip to Kristen for this one. Feel free to play along - and let me know if you do.. it is not as easy as it appears. The rules are ...
