History

Wednesday, May 18, 2005 3:40 PM CDT

Day 97 -

Mark's PET scan is negative which means he is CANCER-FREE! He is considered to be in "partial remission." Complete remission comes after 18 months of being cancer free. We are so happy and excited, it's beyond words.

We see Infectious Diseases tomorrow and a Radiation Oncologist. Dr. Johnston wants to make sure he shouldn't follow-up with some radiation since Mark's lymphoma was so aggressive.

That's it for now. There are, of course, more details about bloodwork, etc., but none of that seems to matter right now.

We've already celebrated with a DQ blizzard. I'm trying to talk him into taking me to Red Lobster tonight. All he wants to do is nap!

THANKS for everything all of you have done to get us to this point. You have given us the courage, strength and determination to fight this fight and win! We are so blessed!

Love, Jen

Saturday, May 14, 2005 11:41 PM CDT

Day 93? (I guess that's a good sign that I don't know what "Day" it is) -

Sorry I haven't written for awhile. The very next day after I wrote last, Mark started having severe shooting pain in the left side of his head. I called Mayo on Thursday morning (May 5) and they suspected Shingles (which they had warned us was very common in transplant patients). Mark went to his primary doctor in Roseville (what a treat that was) and he suspected Shingles as well, although Mark had not developed the classic rash that goes with Shingles. He was to get prescriptions filled as soon as the rash developed, although Dr. Wiencke thought there was a chance that it was a very mild case that he could fight off on his own. The pain persisted through Sunday with no rash developing. By mid-week this week, it had subsided.

Unfortunately, right on the heels of this head pain was a bad cold. So, extra fatigue, loss of appetite, and bad cough set in and have plagued him all week.

It was really hard to acknowledge that he had taken a step or two back, so I think that's why I couldn't muster the energy to send this latest news. I was in partial denial and wanted to stay there.

As usual, he's being a trooper and doing what he can around the house. For our record, I should note that I stopped worrying about his caloric intake about 4 weeks ago. I turned over pill caddy filling and medication tracking responsibilities about 3 weeks ago. And two weeks ago he started helping with some childcare and transporting of kids. So, as I look back, I can see that our family has made HUGE strides in regaining some normality.

The kids are striking out and misbehaving more (could it be the 5-day-stretch of 30-40 degree weather in May?). I think we are all working hard at finding a new family dynamic. Mark is beginning to discipline the kids again and of course, that's a big change for them. He's also available to help and play some and that takes some adjusting too. I wish I could say that Mark and I were doing a great job of communicating with each other and our kids about all the changes taking place in our family but we're still so much in the mode of "just getting by." I think Mark and I are just trusting that we're all on the same page and moving in the same direction. Sounds scary as I write it!

Next week is a HUGE week for Mark and me as we return to Mayo for his "DAY 100 Review." We'll leave late Monday and return Thursday afternoon. My parents will be covering the home front. Tuesday will be filled with lots of tests (PET and CT scans) and Wednesday we'll meet with Dr. Johnston. It's too scary even to think about what we might learn, but I have moments when I imagine we'll hear the words "COMPLETE REMISSION."

A funny thing has happened to me during these last eight months. I've lost my fear of flying. I haven't actually tested it by getting on a plane, but I don't feel anxious about the idea anymore. Now it may be my anti-depressants, but I think it's also my newly-acquired confidence that I can and will deal with whatever comes my way at any given moment. So, if the plane were to crash or be taken over by hi-jackers, I could and would deal with it and God would be at my side. That's where I'm finding the strength and courage to face the news next week. We will and CAN face whatever comes next.

I'll be faithful about posting our news next week.

Love to all, Jen

Tuesday, May 3, 2005 1:51 PM CDT

Day 82 -

Well, it appears that Mark has finally turned that corner we've been waiting for. His appetite kicked in on Saturday (DAY 79!) and it was a wonderful thing to behold. It was hard to contain my excitement as I watched him get up and get himself a big bowl of ice cream at about 10:30pm! He's made several trips to the kitchen since and it's wonderful.

He attended the Roseville Fire Department's Officer's meeting last Thursday night. He "forgot" his oxygen which I wasn't too happy about, but it was really good to see him make the effort to go. Station #2 Chief Kevin Kelly escorted him which was a good thing because he was completely exhausted by the three hour event.

Yesterday, I squeezed in some work at the office after Mark agreed to pick up Luke and Allison from preschool, feed them lunch and get them down for a nap. I intended to pack a "picnic" lunch for the three of them to make it easier, but Mark insisted he could do it. They all reported that it went very well.

So, I'm thrilled (as is everyone witnessing this!) that he is making such good progress. I'm grabbing little bits of my life back as soon as chances appear. Which means I'm still exhausted and overwhelmed and grasping for breaks. My parents have committed to giving me 4 hours of non-caregiving/working time each week though and I'm REALLY enjoying that.

That's it for now. I'll keep you posted. Like my friend Nancy just wrote, "No news must be good news at this point."

Love, Jen

Tuesday, April 26, 2005 10:30 PM CDT

Day 75 –

After three separate trips to Mayo in five days, I’m beat! But I promised an update, so here goes.

Mark’s Infectious Diseases doctor, Dr. Wilson, is very pleased with Mark’s progress. He said that the lack of fever, chills, and cough all are excellent indications that things are heading in the right direction.

He walked us through a centimeter by centimeter view of the CT scans, comparing yesterday’s scan with his March 29th scan. We compared both the nodals (hopefully dead Hodgkin’s) and infiltrates (assumed fungal infection). In all but the last few comparisons at the very bottom of his left lung, the nodals are stable or smaller and the infiltrates are always smaller. So, 95%+ of his lungs look much, much better than they did a month ago.

There is some concern about the one new spot in the bottom of his left lung. Dr. Wilson has four theories: 1) inflammation caused by “overactive” neutrophils (white blood cells) which is not uncommon in patients that have a rebounding immune system, 2) mucus, 3) new infection or infection that isn’t responding to his anti-fungal med, or 4) lymphoma. Because 95% of his lungs look much better and because Mark is feeling better, he really doesn’t think this new spot is infection or lymphoma.

The next step would be to biopsy the new spot to diagnosis lymphoma, infection or something else. He discussed with us whether to proceed with that now or to wait two weeks and do another CT scan. Dr. Wilson consulted with Dr. Johnston (our hematologist) and together they decided it was o.k. to wait. I am pretty anxious about waiting although I trust Dr. Johnston’s opinion. He explained that the management of whatever it is wouldn’t change whether we biopsied now or in two weeks. But what about my peace of mind? Dr. Wilson reminded me that 95% of his lungs look very good. So, I reminded him that 18 months ago I was told that 90% of Hodgkin’s patients go into remission after 6 months of treatment, so this “95%” business doesn’t fly with me! He was very understanding and reassured us that if Mark in any way starts to deteroriate that they would change the plan.

I also pressed him about when Mark might start feeling better. His response (which was absolutely ultra-frustrating) was, “Well, you can’t expect him to be mowing the lawn one week after his transplant with a fungal infection thrown in.” I quickly responded, “IT’S DAY 75! And I’m not expecting him to mow the lawn even now. When will he be able to set the table?” The bottom line is that they just don’t know. No matter how many times I ask or how many ways I ask, nobody knows. Patience, Jen, patience.

I'm also frustrated that nobody is "claiming responsibility" for his lack of appetite. The transplant folks blame the anti-fungal meds and the Infectious Diseases folks think it's transplant. And both camps think his appetite would be good if not for the other. I'm a bit worried about it, but Mark keeps eating and is maintaining his body weight so at least it's not a health issue -- just a huge annoyance, more for Mark than for me!

That’s it for now. Next week should be a “Mayo-free” week (knock on wood). I’ll write another update at the end of the week with some of Mark’s latest accomplishments. Tonight he read stories to both Luke and Corrine. Yeah!

Saturday, April 23, 2005 2:50 PM CDT

Day 72 --

Mark and I had a good trip to Mayo yesterday. Dr. Johnston continues to be VERY pleased with Mark's progress. I requested another "pep talk" and he was happy to do it! Mark's blood counts remain very good. His hemoglobin is 12.1 and his platelets are 72. His potassium and magnesium are high enough that he can stop those supplements. Dr. Johnston thought that stopping those meds alone should help Mark feel better. Even though his oxygen saturation remains good, Dr. Johnston wants Mark to continue using oxygen because his pulse is still racing (120 beats/minute) and his body is still working so hard on the basics. Mark was NOT pleased about this decision, but didn't argue and I wasn't about to do that for him. We won't see Dr. Johnston again until May 17 for Mark's 100 DAY visits, so Mark knows he's got several more weeks to haul oxygen around.

We return to Mayo on Monday for a CT. The Infectious Diseases doctors have ordered that one. We'll return on Tuesday to meet with those doctors and get their read on the fungal infection. They won't interpret the cancer results and Dr. Johnston said he won't want to. He wants to wait for the PET scan in mid-May.

Life continues to be a huge challenge for Mark. Eating is still a very big chore and it's so hard to watch as he chokes down bite after bite. Breakfast seems to go o.k., but by dinner it's really hard. His cough is almost non-existent (hurrah!). But he struggles with feeling cold and extreme fatigue. I notice that he's gaining strength though and making tiny progress everyday.

I'm hanging in there. These last two weeks have been VERY challenging for me as well. But as usual, I've let people know that I'm needing help (not always very directly) and help is on its way! I had a great conversation with Julie Wendland. She went through this process with her husband, Rich. We work in the same building at USBank but met through Roseville Lutheran. We bumped into each other at work on Thursday and she knew EXACTLY how I was feeling. She gave me a great pep talk and listened and nodded and gave me a big HUG and SMILE. I need more of those conversations Julie!!!

I'll write again on Tuesday after we get news from our Infectious Diseases doctor.

Thanks for the continued support! Love, Jen

Monday, April 18, 2005 9:07 PM CDT

Day 67 -

Not too much to report -- Mark still feels lousy, but is making great attempts at his tasks (eating, drinking, exercising) and helping me. He even put the twins down for their nap today.

He volunteered to come with us to Isaac's first baseball practice tonight. Despite the nearly 80 degrees, he sat with a sweatshirt on and worked hard to stay warm. He finally agreed to let Corrine fetch Allison's "Hello Kitty" fleece blanket from the car and wrap him in it! You know a guy is cold when he agrees to sit wrapped up in a "Hello Kitty" blanket at his son's baseball practice. He is such a trouper. After practice, he happily sat in the car with the heat blasted while I chatted with moms and the kids played. It was a fun family outing on a gorgeous spring evening.

Last night we took advantage of a babysitter for the first time in 3 months. Mark choked down Don Pablos (which is usually a favorite) and then we went for a drive. We decided to drive by his brother Paul's new house which we haven't seen yet and we were pulling out just as he was returning from a bike ride. So, he invited us in and we had a great visit.

We return to Mayo on Friday for more bloodwork and a visit with Dr. Johnston. Then we're back next Monday for a CT scan and a visit with Infectious Diseases on Tuesday. I'll keep you posted on what we learn.

Thanks for your continued support! -Jen

Friday, April 15, 2005 10:13 PM CDT

Day 64 -

Mark had a "good" day yesterday although it was hard to recognize until a "bad" day came along today. At least now we're starting to see the concept of "good" and "bad" days (up until now they've all been bad!). I convinced Mark to go watch Corrine, Allison and Luke at gymnastics last night since he hasn't been able to see them since last spring. It was exhausting (and maybe too much?!?), but he really enjoyed it and the kids thought it was super. Today I tried to convince him to come with me and our three pets (Quaker, Webster and Shadow) for their annual exams at Dr. Guck's. Dr. Guck has been our vet and good friend for nearly 14 years and Mark always looks forward to seeing Dr. Guck. I was disappointed that Mark couldn't muster the energy, but I respected his decision.

I had two good days at work this week after a week and a half off dealing with Mark's hospitalization and my Grandma Alice's death. Although I was dreading going back, I knew that it would be good once I got there and it was. As usual, it was a good distraction and I was greeted with cheers, hugs, words of encouragement and lots of reminders to take my time and ease my way back in. Easier said then done! It was a very positive experience though and I'm looking forward to my work hours next week.

The last thing I want to share is the struggle I've been having with Mark's excellent medical report this week. I've thoroughly enjoyed everyone's website entries and positive responses to the news, but I've been puzzled by my lack of happiness after the news. My neighbor Sarah helped me pull together an analogy which I think explains my absence of joy. Imagine that a tornado came through town and destroyed your house. Friends rallied and provided food, clothing, temporary housing and care for your family. Contractors start rebuilding a year later and explain that it will be a hard, slow process removing debris and rebuilding the structure. Mid-way through this difficult time, a huge thunderstorm rips through town one night and floods the beginnings of your new home. The contractors arrive in the morning and say, "The storm is over! I bet you are happy! What excellent news!" Standing amidst the remaining rubble and knee-deep in water, I see nothing but destruction and hard work ahead with energy stores at rock bottom...

I know that is probably difficult to hear and that I should just be "happy" that this storm is over. But I'm weary and I see the weeks of hard, hard work ahead, so bear with me if I lack some of the same happiness some of you are expressing. Keep expressing it though! It is helpful and reminds me to take the progress as it comes.

That's it for now. My parents are leaving in the morning and I'm heading into five days of solo-parenting and care of Mark. ONE DAY AT A TIME!

Wednesday, April 13, 2005 10:59 PM CDT

Day 62 –

Excellent news from Mayo! Mark’s x-ray looks “clean” – free from most (or all?) of the infiltrates seen before (still assumed to be fungal infection). He’s still coughing, so it’s hard to believe it’s all gone, but Dr. Johnston was VERY pleased with how the x-ray looked. Mark’s blood counts look good too. His hemoglobin was 13.0 which we all had a hard time believing. This is often erroneously elevated when a patient is dehydrated which could be the case for Mark, but even if his count is 11.0 that would be great. His platelets are 72, so it’s probable that his platelets have finally engrafted. His potassium and magnesium counts were good too so we can cut back on those supplements. Even though his oxygen saturation level was excellent (98%), Dr. Johnston wants him to continue on oxygen for another week. His body is still working so hard to regain strength that the oxygen is an easy good way to give his body a boost.

Dr. Johnston ended our meeting with a great pep talk for Mark! He looked Mark right in the eye and said, “You’ve had a tough recovery, much harder than the average recovery from a stem cell transplant. You hit the huge speed bump that most other patients get to go around. Even though you still feel awful, you are doing very well. Keep doing the things that will build your strength – drink, eat and exercise. When I first heard you were back in the hospital, I was worried it was your Hodgkin’s raging back because that sometimes happens, but we can see now that it is not. I know it has been very, very difficult and is still hard, but you’re doing a great job and it will get better.”

It was great news to hear. I think Mark was very relieved. I’m sure it was easy to imagine more bad news because he’s still feeling lousy and good news just doesn’t seem to come our way very often. To be honest, I’ve hit the point where I rarely worry anymore. I think I’m too tired. In the back of my mind, I worried a little bit about not packing an overnight bag in case we had to stay, but mostly I just knew I’d handle and cope with the news we got.

We had a little excitement when we arrived in Rochester and realized the only tank of oxygen we brought for Mark was completely empty. We’re still not sure how that happened because we left with a full tank. Anyway, while Mark napped I drove over to Apria and got two new tanks of air. Mark was tired enough that he voted for a hotel room so he could spend the three hours between appointments sleeping. I got a refreshing 45-minute nap in too.

It’s back to work tomorrow for me after a week and a half off. I don’t feel ready to go back at all. I’m still absolutely exhausted and feeling pulled in so many directions. The kids are thrilled to have us home and have been (as expected) demanding lots of time and attention which I know they need and deserve. My parents are still very committed to being here as much as I need them, but it’s easy to see that they are ready to be home and be outside at the lake after living here for nearly all of the last 90 days.

We’ve hired a wonderful nanny, Anna, who will be coming to help with dinner and bedtime 2-3 times a week starting this week. The kids are excited and I already feel like she’s trained in. So, I’m happy about that.

That’s it from Roseville. Looking forward to writing many more entries with good news from Roseville…

Monday, April 11, 2005 10:10 PM CDT

Day 60 -

Day 60 is usually a big day for transplant patients as they return to Mayo for their first of several check-ups. So, it was somewhat disappointing that Mark's "Day 60" appointments were cancelled last week and replaced with an appointment on Wednesday to follow-up on his lung infection. It's interesting to look back and try to remember what we envisioned Day 60 being like. We do remember a conversation with Sue Christiansen on one of her early visits to Rochester. We were trying to figure out what kind of post-transplant care Mark and our family might need. Sue suggested looking ahead in the "Across the Chasm" journal (another family's transplant experience) I had been reading. I randomly opened it to "Day 58" to read that Brian was still dealing with nausea and eating issues. Sue quickly suggested that I stop reading..."not a good idea after all", she joked. At that point in time, we could not fathom still dealing with eating issues! Well, here we are and still dealing with more than that!

In most ways I'm glad we didn't fully comprehend how hard and long his recovery was going to be. I think he'd be hard pressed to say he's had a single "good day" since his transplant 60 days ago. I overheard him tell his brother tonight that he's feeling "not great, but doing o.k." He was very quiet today and I'm guessing that being back in the craziness that comes with all the kids is a bit overwhelming.

As I've resumed my motherly tasks and have tried to get our house back in order (still am unpacking from our first return from Rochester, and our return from the hospital stay and my return from my grandma's funeral!), I know I am not as closely tuned in to Mark's needs and struggles as I probably should be and that's hard. Today I noticed he took his blood pressure several times and I finally asked him what was going on. He was getting low readings, so I called our Mayo nurse and she agreed that he should start taking the Florinef today (medication to help him retain fluids and boost his blood pressure). I'm SO glad we're going back on Wednesday to have his blood checked, an x-ray evaluated and some time with Dr. Johnston.

The kids and I had a good trip for Grandma's funeral. They loved the swimming pool at the hotel and I got a few minutes to connect with cousins, aunts and uncles. The kids connected with some third-cousins we had never met before and really had fun with them. It was exhausting to say the least, but the kids traveled amazingly well and I returned with the confidence that I actually could again travel alone with the four of them (not that I want to!).

That's it for tonight. All the kids will be out of the house tomorrow, so Mark and I should have a peaceful day at home. I'm hoping to make a bigger dent in the endless piles scattered throughout the house. Assuming it's an uneventful day, I won't write again until Wednesday after we return from Mayo.

Thanks for all the support and encouragement we're getting here at home. We're amazed that help continues to roll in -- this world and its people are so amazing!

Thursday, April 7, 2005 11:45 PM CDT

Day 56 -

We're home. After a short rest, Mark took a walk around the yard and then ventured downstairs. He sat in several rooms just soaking it all in. He wasn't feeling well enough to enjoy home just two weeks ago when we were home. It was so good to see him walking around and savoring his environment.

The kids were thrilled to have us home. I don't think they fully understand that we'll be leaving Daddy behind as we head to Jasper tomorrow for Grandma's funeral. I think it will be good for Mark though, to be home yet in a quiet, restful place. His sister Joelyn is spending the weekend with him and the dogs at our house.

Mom and I frantically packed tonight for the weekend. It's supposed to be warm especially in southwest Minnesota, so we were busy collecting dressy clothes, spring and summer clothes. There is a pool at the hotel in Brandon where we'll be staying, so swimming suits were packed too. The kids are very excited about this "mini-vacation."

My parents are leaving mid-morning so they can arrive for the reviewal on Friday. I'm leaving at noon as soon as Allison and Luke finish preschool and just minutes after Isaac finishes up his week-long standardized Terra Nova (state mandated) testing at 12:15.

I'm a little anxious about the 4 hour trip alone with the kids, but Mom and I worked hard to pack adequate snacks, books on tape, and music. They've gotten to be pretty good travelers, so I'm hoping for the best.

That's it for now. Have a few more things to get done before bed. I won't write again until Monday, but feel free to call Mark if you want an update. He could use a phone call or too.

Blessings to you all! Love, Jen

Wednesday, April 6, 2005 10:15 PM CDT

Day 55 –

Mark gets to go home tomorrow! I am so excited. Mark is happy too, although he’s a little worried (as am I) that he will deteriorate after we get home (like our last experience). He's also disappointed that he has to go home with oxygen. He’s at such a low level though, I imagine he’ll be able to be done with it within a week or so. We’re expecting that we’ll be back at Mayo next week for blood work and a follow-up appointment with Dr. Johnston.

Mark went all day without IV fluids. It was his first day of freedom from the IV machine for 9 days. I ran errands at noon and when I got back I watched him unplug his IV machine and wheel it around his bed to the bathroom. I quickly asked him if they had restarted fluids. “No, why?” he asked. He didn’t realize he was carting that IV machine with him purely out of habit. It gave us a good laugh. He did manage to down 13 cups of water and other fluids today, so I’m feeling pretty confident that he can drink enough to stay hydrated. We bought a blood pressure measure to help me remain confident that he isn’t becoming dehydrated once we get home.

Earlier this week he was walking just once around the nursing station for his walks, but today he managed three laps for each of his four walks, so he is really progressing in strength and stamina.

He had another chest x-ray today and that was stable – not better, but not worse. They explained that x-rays often lag behind what’s actually going on, so the fact that he is clinically better is the best sign that things are heading in the right direction. It may take a week or more before his x-ray shows that improvement.

Will write tomorrow from Roseville! Yeah!!!!

Tuesday, April 5, 2005 10:01 PM CDT

Day 54 –

I am feeling very encouraged tonight. Mark continues to feel a little better everyday and has remained fever-free. His cough is less frequent, although still violent and vomit-inducing. He is smiling frequently and even chuckles occasionally. It is SO good to see.

The Infectious Disesases have “released” Mark from their care. Although not sure he is dealing with a fungal infection, it is their best guess at this point. Fungal infections take a long time to clear, so they expect a little improvement each day but not significant improvement for several more weeks. From their point of view, Mark is ready to go home. They would like to see him back for a CT scan in 2-3 weeks.

The hematologist, Dr. Litzowe has canceled Mark’s “60-day check” appointments for next week. It doesn’t make sense to do pulmonary function tests or a PET scan because infection will alter the results of those tests. That was such a relief to me because I’m really ready to have a week at home. We’ll see what he says in the morning. They cut his I.V. fluids in half today as a test to see if he can stay hydrated on his own. He may need to go home on oxygen, although the nurses have been experimenting with that today too. Right now he’s on a flow of “1” compared to “2” yesterday. We did try to go on a walk with a flow of “1.5” and he had a coughing spell that required an increase in oxygen flow to “4” for awhile. He really doesn’t want to go on oxygen which I can understand, but I’m really ready to get him home and willing to deal with that hassle.

Instead of finding a new hematologist in St. Paul, we’ve decided to have all of his post-transplant care (up to Day 100 anyway) done at Mayo, even if that means driving down for blood work. Through this latest experience, we’ve learned that we’ve come too far to mess around with a clinic and doctor that don’t know his transplant history and issues.

Our good friend, Gayle Schurz, came down to visit today. We went for a long walk around town and she helped me check into the hotel. Then we had a nice long visit before heading back to spend some time with Mark. It was great to see her.

That’s it from Rochester. Hoping for more signs of improvement tomorrow.

Monday, April 4, 2005 10:32 PM CDT

Day 53 –

Mark is feeling better. The doctors still haven’t concluded what’s going on with Mark. They quit his Cefepime antibiotic, quite sure that he isn’t battling anything bacterial. He hasn’t had a temp higher than 99.5 since Saturday morning, so that’s very encouraging. He got two more units of red blood cells yesterday. The doctor explained that when a body is fighting infection bone marrow production slows down and hits the red blood cell production hardest. Even though the doctors are encouraged, they expect Mark to be here at least through the week. The Infectious Diseases doc said it would be up to the hematologist and the hematologist said it would be up to Infectious Diseases to release Mark. By tomorrow, I expect they will have talked to each other and have a better idea about the criteria required for Mark to be released. They believe there is still a chance that they will be able to identify the specific fungus involved, but that usually takes a long time (weeks sometimes). There is probably a better chance that it will not be identified; Mark will just continue to get better.

Mark’s low blood pressure is gone and now is a little on the high end, but the doctors are encouraged by that because low blood pressure can be caused by rampant infection and the fact that his is better may indicate that the infection is under control.

Eating is still a struggle, but Mark is now reading the menu and ordering on his own. He continues to fight through every meal. Unfortunately, his coughing is still causing him to vomit up at least one of those meals a day.

He’s being very good about walking too. The doctors want him up four times a day and he has done that almost everyday. The nurses wish every patient would be so motivated. Of course, Mark gives me some credit because I am quite persistent about him meeting his goals every day.

I’m doing pretty well. Even though I sleep fine in the hospital, I’m going to get a room at the Kahler Hotel across the street tomorrow. The nurses aren’t excited about me using Mark’s shower because of the risk of unnecessarily spreading bacteria. So, I’m looking forward to my own shower and real bed. I went shopping for clothes for my Grandma’s funeral today. Even though it won’t be a formal affair, I’ve gained 15 pounds in the last six months and have nothing to wear. I shopped at the Galleria Mall and found a brand new little shop with two sales people who treated me like royalty. They helped me try many things and gave me what felt like genuine feedback. They were so friendly and nice and pampered me to no end. It was the best shopping experience I’ve ever had (for those of you who don’t know me well – I despise shopping, especially for clothes).

Several families including Mark’s parents split up the kids from Sunday through tomorrow so that my parents could dash home and get the dead, downed white pine tree off of the frozen lake before it melted, get Grandma’s clothes for her service and grab stuff needed to get their taxes done! They met with Duane and Sue (my uncle and aunt) in Hutchinson to plan the service and were ready to head back to Roseville when my dad realized he left his suitcase and suit at home. So, they headed back north and will come back to Roseville tomorrow. We boarded our dogs for a few days; my parents will pick them up tomorrow and then take Quaker to the vet because she appears to have an eye infection. The juggling of life’s details is quite an act this week. Thanks to all who are helping us get through it.

Thanks for prayers for Mark’s health. He felt good enough to read the website guest book last night (it’s probably been two weeks since he has felt good enough to do that). He thoroughly enjoyed all of the wonderful messages of encouragement. Keep them coming!

Saturday, April 2, 2005 9:56 PM CST

Day 51 -

A quick note to update you on Mark and Great Grandma Alice.

Mark's doctors have changed their theory from bacterial pneumonia to fungal infection based on the fact that Mark has not responded as well to antibiotics as they expected. They started him on a fungal treatment yesterday. Mark has moments of feeling better, but is still battling fatigue, his horrible cough, shortness of breath and food/vomiting problems. I'll be back in Rochester tomorrow. (THANKS to Paul for caring for Mark this weekend and giving me a much needed break! Thanks too to Shryer Ave. neighbors for providing a place to lift my feet, ears to listen and good food and margaritas to savor!)

On a sad note, my grandma Alice (age 99) died today. This morning my dad and Duane sat with her and talked to the doctors who explained that it was time to decide to take the path of "fighting for her life" or of "letting her go." As hard as it was to decide to let her go, they knew that was what Grandma wanted. This path meant putting her back on morphine so that she was comfortable, but not supporting her with nutrition. The doctor guessed that it may take a week for her to go. Within a few hours, she died. Mark's dad kidded that she didn't want to miss the opportunity to sail into heaven on the coattails of the Pope (hope everyone can enjoy the good humor in which it was intended -- I know my grandma would have!). It's comforting to know her long days are over and she is with Grandpa, her dear twins Neale and Nancy who died at age 19 and my beloved sister, Liz. My dad is taking it very hard; he's been hurt by death so much in his life. I'm sad, but am so glad that my parents can now get on with their retirement, having dedicated their first four years of their retirement to her care. Reviewal and service are tentatively planned for Friday and Saturday in Jasper.

Will write more tomorrow.

Thursday, March 31, 2005 10:13 PM CST

Day 49 –

Mark may be feeling a little better. He smiled today for the first time in days, initiated a conversation (asked about Grandma Alice) and read some of the newspaper which I thought were all good signs. His hemoglobin was 8.9 this morning, so he got another red blood cell transfusion today and he continues to get IV hydration. He didn’t sleep well last night, so he was very tired today, but he agreed to two short walks around the nursing unit.

The latest theory is that he has bacterial pneumonia. Even though all cultures continue to be negative, the visual evidence of infection from his broncoscopy and the positive response (reduction in fever) to IV antibiotics is driving the theory. Mark’s temp has been below 100 all day with no Tylenol. His hematologist continues to consult with Infectious Diseases and Pulmonary specialists and they all agree to continue with the current course of antibiotics. They haven’t ruled out a fungal infection, so I asked why they wouldn’t start a fungal treatment now. He explained that if they start too many treatments they won’t know which is effective and how to proceed. They also said that once you start a fungal treatment you are committed to it and they are usually very long.

His cough is still wicked, painful, persistent and so violent. He’s been getting “salt water treatments” (not the official name) which consist of wearing a mask filled with forceful flowing oxygen and salt water that he breathes for 30+ minutes. This helps hydrate his airways and lungs with the aim of loosening up the "junk" in his lungs and making it easier to cough it up. It does produce a lot of coughing, some of it productive and some not. Mark definitely dreads these 3-times-a-day treatments and has to time his meals so that he has plenty of time to digest food before these cough-producing treatments. More than once he’s lost his latest meal after a coughing fit.

I’m going back to Roseville Friday afternoon. Paul is coming down to relieve me. Mark thinks it’s crazy to have a caregiver with him all the time when he has nursing care, but the fact is that Mark needs nudges and encouragement to get meals, walks, and his shower accomplished. I’ll go back to Rochester on Sunday morning. My parents continue to care for kids at our house. I'm hoping to get them a short break so they can go home for a few days next week.

Grandma Alice had her hip surgery on Monday evening. It was successful but she hasn't been communicative (hasn't really come out of the anesthesia) since. The doctors are amazed at her heart and lung function and her vital signs are good; however, she still has a lot of recovery ahead of her.

I’ll close with special, special thanks to my friends Jules and Sue, who have given me extra care this week. Jules has checked in everyday, listening and encouraging me constantly and Sue drove down tonight and took me to dinner. We sat and talked for three hours – it was absolutely wonderful.

I’ll try to update the website sometime this weekend, but it may be Sunday before I get back to it. Hopefully I’ll have good news to report then!

Wednesday, March 30, 2005 11:19 PM CST

Day 48 -

Another very miserable day for Mark. His hemoglobin was 7.6 which was surprising because it was reported as 8.9 on Monday and he got a unit of red blood cells. Our nurse practitioner explained that because Mark was so severely dehydrated when he got here on Monday, his hemoglobin was grossly overstated; it was probably much lower than 7.6 on Monday. Normal for a healthy man is 13.5-18.5 and transfusions are given at 8.5, so he got two more units of red blood today. Hopefully that will help his energy level and breathing too. He’s been on oxygen since he arrived on Monday, but he’s been able to decrease the flow this evening probably because of the transfusions.

Unfortunately, the docs didn’t have much news for us today. The influenza A test and CMV virus were both negative. All other cultures are still pending. The broncoscopy showed some visual signs of infection, but the helpful information will come in the form of bacterial, viral, fungal, etc. and what specific bug it is. His INR (clotting level of blood) jumped from 1.0 to 2.2 today which startled everyone. They retested and determined it was a lab error. He’s still on IV fluids trying to catch up on his hydration. His kidneys are functioning well so they are hydrating slowly.

They are expecting that Mark will be here at least through the weekend. Amazingly, he says he’s not discouraged. I was very disappointed to get no results today and to hear that we may have many more days of this. Mark is suffering (fortunately no pain!); he’s coughing to the point of gagging, still fighting fever (100.9 tonight), has terrible fatigue and no appetite. He watches some T.V. but mostly sleeps. He doesn’t smile, squeeze my hand like he used to when I’m sitting with him, or converse at all. He uses all of his energy for existing. It is really, really hard to watch, but I continue to be inspired and amazed at his strength and courage to keep fighting and doing the hard work (eating, showering, etc.).

Please keep your prayers coming. Until tomorrow, Jen

Tuesday, March 29, 2005 10:03 PM CST

Day 47 –

Back at Mayo and back into our Mayo routine. Were we really home last week? Almost feels like a dream that didn’t really happen. Although I’m still feeling the effects of the stress of that transition, so that brings it back as reality.

I am actually feeling thankful today that United Hospital didn’t have a bed available for Mark, because if they had I would have been there today feeling all of the frustration from yesterday all over again. We are VERY glad to be at Mayo on the transplant ward being seen by hematologists (rather than an oncology ward being seen by oncologists who don’t know a thing about Mark and his last 6 months of treatment). It was definitely worth upsetting Mark (he didn’t want to come to Mayo yesterday) and the MN Oncology staff (who deemed him unstable to travel but wouldn’t authorize medical transport because they wanted him at United even though they didn’t have a bed until late in the afternoon!) to get him down here. We’ll have to see how they feel about having Mark back as a patient once we’re in St. Paul again or is time to search for a new St. Paul oncologist – maybe even a hematologist if one exists in St. Paul ???

Many tests are pending including influenza A and B, blood cultures, and sputum cultures. At this point, the hematologist thinks that the pulmonary specialists are most likely to get to the bottom of Mark’s fever, cough and overwhelming fatigue. Even though fatigue is expected 50 days after transplant, his fatigue is not in line with the expectations for Day 50.

While Mark went down to get another CT scan (last one was just two weeks ago), I peeked through Mark’s internal hospital room window and watched the pulmonary consultant and fellow sit at the nurses’ station PC and spend 40+ minutes reviewing Mark’s old CT scans. I made several excuses to leave the room and circle the unit, hoping to catch bits and pieces of their analysis and observations without actually standing behind them and eavesdropping. One of my favorite Mayo pastimes is to catch medical teams conversing outside patients’ rooms or at nurses’ stations or in hallways, obviously engaged, passionate and deep in team problem-solving. This cross-discipline brainstorming and communication is part of what makes this institution world-class.

When the pulmonary doctors came in, they had already seen Mark’s latest CT and shared their latest theories. Dr. Lim started by labeling Mark’s cough as “recurrent bronchitis” which I was thrilled to hear because that totally makes sense given what I’ve witnessed since November. He also noticed that Mark’s airways have thickened in recent CT scans. So, he’s wondering if : 1) Mark’s immature immune system isn’t making adequate antibodies to fight bronchitis, and/or 2) his thicker airways make it harder to get sputum up and it stays in his lungs and becomes a breeding ground for bugs. Therefore, he ordered another broncoscopy which Mark had done today. (For those of you who remember how uncomfortable it was for him last time, rest assured that it went much better this time! I convinced the dr. that the anesthesia didn’t work last time and he promised us both that it would this time – and it did!) The bronc included “washings” which should produce a sample of lung fluids to culture and biopsies of the air sacs. It will also be interesting to see what the hole in his trachea looks like.

Dr. Wilson, an Infectious Diseases doctor also saw Mark. He’s keeping Mark on the two IV antibiotics that they started yesterday and also started him on an anti-fungal called Moxifloxicin. He’ll interpret the “washings” from the broncoscopy and make adjustments to meds based on that.

The nursing staff is working hard to keep Mark comfortable. He’s had fever on and off today (back at 102.2 now) and a lot of coughing through the night. I’m staying here at the hospital, so that I’m available to help him or ask for meds in the night and to be available whenever a doctor appears.

Many folks are rallying around my parents and the kids during the “surprise” trip back to Rochester. Last week whenever I left the kids, Allison would ask, “Are you going to Rochester?” I think I finally had her convinced that my next Rochester visit would be weeks away (that probably wasn’t the best idea). Anyway, Klitzke’s kept Isaac and Corrine overnight last night and Mark’s parents have offered to keep Luke and Allison overnight as many nights as they can so that Isaac and Corrine can have some time at home. We really appreciate all the calls to my parents offering help. Six months ago I never could have imagined that Mark and I could leave home on a moments notice and have the kids’ lives continue so seamlessly. Thanks to all who have made that happen for them and us.

We’ll know more tomorrow. -Jen

Monday, March 28, 2005 10:51 PM CST

(Day 46)

Hi all,

This is Jules writing for Jen, who is without computer access tonight.

Jen and Mark have had another very rough day, and are back at Mayo tonight. Mark is still really sick and developed a fever of 101 earlier today. After a lot of extremely frustrating run-arounds with MN Oncology, and a long, unproductive wait to get admitted to United Hospital, Jen drove Mark to Rochester this afternoon, where he was admitted to Methodist hospital. (Jen can provide more details about their excruciating, exasperating, and wearisome day if she wants next time she writes.)

Jen feels discouraged of course, but she is also very relieved to be getting great care again at Mayo. It’s also a relief that doctors are taking action and running a lot of tests to identify what’s going on. Jen mentioned an EKG, influenza test, blood cultures and a chest x-ray. So far, only the EKG results have come back--everything looks good there. Jen is hopeful they will learn more tomorrow when they meet with doctors.

Tonight Mark was getting a blood transfusion because his hemoglobin is low, as well as IV fluids. They also started him on antibiotics.

Jen is staying at the hospital tonight. After she and Mark talk to the doctor tomorrow she may get a hotel, depending upon what they learn. She is planning to update this site tomorrow, and will give us all a lot more details about how they both are doing. Until then, keep the prayers and positive thoughts directed their way!

--Jules

Sunday, March 27, 2005 11:23 PM CST

Day 45 (Easter Sunday) -

It's with a huge sigh of relief that I write, "We got through the day."

Mark woke feeling as miserable as he's ever been. He has no fever, but he has body aches, can't stay warm and just feels miserable. I called Station 94 and our dear RNs at Methodist Hospital. The nurse thought he probably has a virus and it's just hitting him especially hard. He went on to say, "there will be good days and bad days for many months to come." THAT'S FINE -- WE CAN HANDLE BAD DAYS, IF THERE A FEW GOOD DAYS THROWN IN! AAAAARGH!

Mark stayed home from church, but mustered the energy to spend a short afternoon in Moundsview with his parents, siblings, nieces and my parents and siblings. To be honest, it was tough to get through -- all Mark and I wanted to do was to crawl back into bed and spend the day there, escaping in sleep! Which we actually got to do when we got home (thanks to my parents!)

The kids had a good day despite the extremely stressed adults around them. My parents limped through the day too and did another great job of pulling me and Mark through the steps. When we got home from Schmaedekes, we found out that my 99-year-old Great Grandma Alice (who is staying with my Uncle Duane and Aunt Sue while my parents try to get Mark and me back on our feet) had fallen and cut her face and broken her hip. She has surgery tomorrow morning. We hate to ask what more could be added to our plates?!?

We'll get Mark in for blood counts tomorrow. He hasn't been checked in over a week, so maybe he's in need of blood.

Many of you are asking what you can do to help and it's beyond recognition by me at this point (meaning I have no idea!?!). We are getting SO many of our needs met. What I truly need right now is for Mark to start feeling a little better. If that doesn't come soon, I think I'll need complete intervention and a week in bed (just kidding).

That's it for now. -Jen

Thursday, March 24, 2005 8:35 PM CST

Day 42 post-transplant, but feels like Day 2!

Day 2 at home and I'm exhausted! Mark, of course, is thrilled to be home. I don't think he realized how much it was going to mean to be home. He is really enjoying hearing and watching the kids and just being with his "stuff" again. He still feels pretty lousy, but he's enjoying "lousy at home" compared to "lousy in Rochester."

My parents brought Luke and Allison here on Tuesday (after dropping 99-year-old Grandma Alice in Hutchinson) and are staying through Monday. Between the three of us, we are managing (I think) to get Mark's needs met, get our Rochester things unpacked and help the kids transition back to life with Dad. My boss is on vacation this week, so I'm doing some of her duties and putting in my full 20 hours this week. Too many, but I should be able to scale back for the next few weeks.

It's been very strange to go four days without knowing Mark's "counts" and sometimes I worry that he is deteriorating and I don't know it. Mom and I are working hard on keeping his meds, calories and fluids in front of him though and he's doing his best to get them down.

He went to lunch with the Roseville Fire Dept. dayshift crew today and Mom reported that he came home SMILING. That's not something we see much of these days. So glad they invited him this week! Thanks!

I'd like to encourage you all to keep the website entries, phone calls, cards and e-mails coming. Even though he's home, he is still very isolated and he needs conversation about "real life!" And, I know everyone is being very sensitive to our busy family schedule, but Mark NEEDS visitors. So, please send an e-mail if you have 20 or 30 minutes some day to come visit with Mark.

As always, thanks to everyone for their steadfast love, care and concern. You are an essential part of Mark's continued recovery.

Love, Jen

Tuesday, March 22, 2005 8:20 PM CST

Day 40 -

Home at last! We arrived about 6pm after a LOOOOONG day of packing and cleaning. Mark isn't feeling much better, but is thrilled to be home.

The kids are excited too. They, along with Grandpa Loren and Grandma Connie made a treasure hunt in the house which led to a handmade treasure chest of homemade and schoolmade treasures. It was really a fun surprise and so exciting for the kids.

Luke and Allison have bad colds, so Mark retreated to our bedroom after dinner. He was needing a nap anyway. Luke and Allison were in bed by 7pm and Corrine by 8pm. Isaac and Grandpa Loren are working on bedtime now.

Mom and I will follow shortly. My parents unloaded the van (which was loaded to full capacity) and Mom's made lots of progress towards getting things put away. I can't face it tonight -- will tackle it tomorrow. Mom told me she's been sleeping 10-12 hours a night since taking the twins north on Saturday. Hoping it's just twin-caretaking fatigue and not a bug of some kind.

I feel like we've closed yet another chapter in our cancer battle and ready to begin a new one tomorrow. I'm quite sure it will be another hard one, but not nearly as hard as the one just completed!

Until tomorrow, Jen

Monday, March 21, 2005 10:45 PM CST

Day 39 –

Hello all! I wish I could report that Mark is feeling better, but he’s not. He felt a lot better Saturday, but then Sunday and today were tough days again.

His CMV test was negative which I’m very thankful for; I did some Internet research on this virus in transplant patients and was pretty discouraged last Friday. It’s very rare in autologous transplants though so our nurse wasn’t too worried about it. His blood cultures from last week are negative as well.

His low blood pressure is better, but his cough is much worse and he has started to wheeze. His doctor speculated that the drug to make his low blood pressure better (by encouraging his body to retain fluids) is probably encouraging fluids to collect in his chest. Dr. Johnston ordered a chest x-ray and if that shows no pneumonia or other new infiltrates (we’ll get results tomorrow), then he can go home! They’ve prescribed an Albuterol inhaler which should widen his bronchial tubes and make breathing easier.

Tomorrow, he’s starting a monthly inhalant preventative for PCP pneumonia which is common among transplant patients. Usually, they prescribe the antibiotic, Bactrim, but his platelets are not high enough to handle that drug. Speaking of platelets, his jumped from 28 on Friday to 39 on Sunday (without a transfusion!), so it looks like his platelets are back on track.

He’s also going to have his PICC line removed tomorrow. We’re really hoping he won’t need any more transfusions or IV fluids, so the line would only be helpful for blood draws. But the risk of infection is not worth the benefit of avoiding a few needle pricks. We’ll be back at MN Oncology Hematology for weekly blood draws starting next week.

Then, we’ll be back at Mayo on April 11 for his Day 60 check-up. They will do a PET scan to check for malignant activity. Dr. Johnston expects to find none (that’s the hope anyway), but if they do, they may biopsy it and/or do some very localized radiation treatment. When we return in late May for his Day 100 check-up, Dr. Johnston will begin to talk about when he can return to work.

My parents, along with Luke and Allison plan to be back in Roseville by late afternoon which is when I hope we’re back too. It will feel ‘amazing’ to all be back in our house for a mealtime and bedtime together. It’s very exciting. The kids have places to be the rest of the week, so it feels managable to me. I just hope Mark is feeling good enough to get some enjoyment out of being home.

A quick note about my weekend. I was treated to several luxuries. First, I slept for 14 hours on Saturday night. After another 8 hours on Sunday night, I woke up today feeling refreshed for the first time in weeks. Ann Jones watched the kids Sunday so that I could take our dogs for a walk! That was a very satisfying experience too. The firefighters arrived on Sunday to help move furniture, take down Christmas lights and then took our van to the fire station to get washed. Finally, Joelyn and niece, Stephanie relieved Paul from caregiving on Sunday and stayed until this afternoon to give me an additional 24 hours at home. What treats they all were! THANK YOU!

Hope to be writing from Roseville tomorrow!

Friday, March 18, 2005 10:35 PM CST

Day 36 –

A day of relief and disappointment…

The relief came as Mark woke feeling a little better. And then Dr. Johnston and his nurse Theresa took Mark’s symptoms very seriously. They concluded that Mark is not ready to go home. They are testing his blood for a serious virus called CMV (although very unlikely that he has it). They agree with the decision to start Florinef to retain salt and fluids. They also want him to stop drinking water and start drinking anything else. Water is flushed so easily by the kidneys; they want him drinking things like Gatorade, juice or broth. If he drinks water, he’s supposed to add a teaspoon of salt to each glass! They want to see him again on Monday to check his status. Dr. Johnston is not comfortable sending him home as long as he is orthostatic (blood pressure dropping significantly when standing); well, that’s been happening for weeks. I can’t imagine that turning around by Monday, but I’m trying to be optimistic. We got him started wearing prescription compression socks too, so hopefully that will help too.

Of course, Mark and I were disappointed that he’s not ready to go home, but we expected that would be the answer from Dr. Johnston. Additional disappointment came when we got his blood counts for today. Both his hemoglobin and platelets took big hits. He got two units of red blood cells tonight which should help him feel better. The fact that both counts took a hit makes the nurse suspicious that something besides orthostatic blood pressure is going on.

We got the official definition of platelet engraftment. When his platelets are above 50 for three consecutive days, his platelets will be engrafted. So, even though his have been stable to increasing this week (with the exception of today when they dropped from 41 to 28), he’s got a ways to go before his platelets are engrafted.

The snow created quite a distraction today. We haven’t heard the official snowfall in Rochester, but we’re guessing it’s close to 12 inches. Schools were closed and the clinic was short-staffed (in fact, they called up their Emergency Staffing Plan) because so many nurses that come from the rural areas surrounding Rochester couldn’t get here. I went out in the snow 5 times today (only a few blocks each time), but every time I had to spend a lot of time cleaning the snow and ice off of our van. Mark and I haven’t seen snow like this for years!

Paul and I decided not to travel today, so we are both traveling early tomorrow morning. I’m looking forward to different caregiving responsibilities for the weekend. It’s been a long week, but I really appreciate all the genuine responses I got to my honest sharing about how things were going for me. Thanks for your care and support!

I’ll write again on Monday. Love, Jen

Thursday, March 17, 2005 11:44 PM CST

Day 35 –

What a long day – it turned out to be one of the worst for Mark. Despite a good visit with the doctor this morning and a “plan” for getting home; Mark was overwhelmingly done-in by the time we got to the hospital at 8pm for his last dose of antibiotic.

You might wonder how he could go from pretty good on Tuesday to absolutely rotten today. I think the truth is that I was in denial yesterday. I was “practicing” living with a stable, getting-stronger Mark. I even yelled at him yesterday. It was the first time in 10 weeks which is a record for me for sure in our 20-year relationship. As I think about yesterday, there were signs he wasn’t feeling as good. He didn’t read the newspaper or initiate conversation with me. He just slept and forced food down.

Back to the doctor visit this morning…the results of the adrenal gland test were normal and the MRA showed “no change.” We were, however, surprised to hear that his mediastinal mass has been and continues to “narrow and obstruct the left innominate vein and has narrowed the superior vena cava (which feeds the heart’s right atrium).” This is the first that we had heard of an obstructed vein. However, the doctor is not concerned because it has been obstructed ever since the large Hodgkin’s mass has been in his chest. Oh, yes; that is comforting.

So, the doctor concluded that Mark’s low blood pressure upon standing and shortness of breath is due to diminished vascular tone and will improve with time. Now, to go home, Mark needs to be independent of IV fluids which he has gotten nearly everyday since his transplant. So, Dr. Dispenzieri suggested that we try to see how Mark does without fluids today and through the weekend. If he does well, he could go home on Sunday (of course after getting Dr. Johnston’s approval tomorrow). She also started him on Florinef which should help him retain salt and fluids and hopefully not need the IV fluids.

By tonight, he was a mess. I was quite worried about him and suggested that I ask if he could stay the night in the hospital. Now, I’ve suggested this before and he’s always resisted strongly, but tonight he thought it was a good idea. Unfortunately, the doctor had left the unit and we were left with a nurse practitioner. I hate to beat up on nurse practitioners because I know there are awesome ones out there, but our experience on Station 94 has NOT been good. Our R.N. called her in tonight and after she checked his lying down blood pressure (which was good) and reviewed his blood counts (which are good) and took his temp (good) and listened to his lungs (good) and reviewed his latest radiology reports (good), she concluded that maybe he was “just feeling anxious about going home.” If Mark could have gotten out of bed and hit her, he would have! I was furious within microseconds, but managed to calmly say that no, he was not anxious about going home, that was my job. He is really feeling awful. She couldn’t justify keeping him overnight, but she did offer a liter of fluids (which kept us at the hospital until after 11pm) and decided to culture his blood for new “bugs.” After sensing my rage at her suggestion that his condition was psychosomatic, she went on to say that it was only Day 35 after this very debilitating transplant and he was just recovering from three very serious bacterial infections and his muscle tone and general health all add up to overwhelming fatigue. But why was he feeling so much better two days ago, I asked. She concluded that it’s just finally catching up with him. OH….I HAVE TO LET IT GO!

Tomorrow we’ll meet with Dr. Johnston and get his opinion. Tonight Mark felt there was no way he could come home feeling this way. Dr. Johnston hasn’t seen Mark since the day before his bone marrow harvest (Day –7), so it will be interesting to see what he observes and concludes.

We’ve changed our weekend plans because of the big winter storm heading our way. My parents are going to stay in Roseville until Saturday and I’m going to stay in Rochester until Saturday as well.

That’s it for now.
-Jen

Wednesday, March 16, 2005 10:27 PM CST

Day 34 –

No news today because no MD today (very frustrating). Last week I requested that Mark been seen by MDs only because then we have only one or two people who follow his current issues. There are several nurse practitioners on the unit and if you have one or two of these thrown in each week, you see a different person everyday. So, we saw a nurse practitioner today, but when she said, “So, no shortness of breath or cough…” I quit listening and decided to save my questions for tomorrow. She obviously hadn’t even read his chart! Ugh! Tomorrow we’ll see the wonderful Dr. Dispenzieri and learn the results of both the adrenal gland test and the MRA of the superior vena cava artery that Mark had today.

On a positive note, it appears that his platelets are engrafting! They were 31 on Monday, 33 on Tuesday and 42 today (with no transfusions inbetween). If they are up again tomorrow, I think they will consider his platelets engrafted which should mean that he won’t need anymore transfusions. More good news.

His low blood pressure continues to be an issue. He felt more dizzy and faint today and his oxygen saturation measured 87% today. He didn’t have time for fluids this morning because of his MRA, but I insisted on fluids tonight when we were in for his IV antibiotics. Mark wasn’t thrilled about it because it means he’ll be up all night going to the bathroom (which I remember was very annoying during those three pregnancies). He also had a really hard time staying warm today. He cranked the apartment thermostat to 75 degrees and still needed blankets to stay warm, especially when drinking water?!?

He continues to do better in the eating department which is such a relief to me. He’s basically eating like a normal person although with small portions. His weight is still dropping this week, but we’re hoping it will level out soon now that he’s eating more.

My dad helped me make a “transition plan” for next week and I’ve worked out the details with Paul for moving our big stuff home on Sunday. We’ll have to wait until at least Friday to learn when Mark is officially released. My parents are taking Allison and Luke up north with them on Friday and keeping them through at least Tuesday. Then on Wednesday, Thursday and Friday, the Gisselquists, Evans and Van Nevels have offered to have all four kids for the day. So, we’ve got a plan for a calm, quiet week at home next week. It should be a good way to transition.

Anxiety is starting to climb for me again as I try to imagine boxing up our apartment stuff and getting it assembled back at home and yet not really knowing when it will happen. My friend Jules and I have drawn numerous analogies between this experience and pregnancy and newborn baby childcare and here’s another one. “You’re going home so be ready to go and move all your stuff and think about taking care of yourself at home but I won’t tell you when you can go until the day you can go.” Just like waiting for that water to break…..

Until tomorrow,
Jen

Tuesday, March 15, 2005 10:17 PM CST

Day 33 -

Our doctor entered Mark's hospital room this morning and said, "I've got good news which you don’t know about and bad news that you do know about."

The Good News! Mark's CT scan looked great! No sign of pneumonia and there are fewer nodals in his lungs and the nodals that remain are smaller. It's still too early to get an official read on the results of the bone marrow transplant, but these initial results look very good. In addition, the hole in his trachea appears to be smaller again. This was all excellent news! Thanks be to God!

The Bad News! Mark's blood pressure remains very low. This morning it was 101/64 while he was lying down and 77/41 while standing up. He had more fluids today which seems to help, but the doctor doesn't think dehydration is causing this low pressure. She currently has three theories: 1) his vascular tone has diminished due to the high-dose chemo; if this is the case, his vascular tone will improve with activity and exercise and his blood pressure will normalize on its own (hopefully soon), 2) he has an adrenal gland deficiency (hypoadrenalism) which would require steroid therapy; he had a series of 4 blood tests done today to check for this, or 3) one of his main arteries (can't remember which one) looked "stretched" or "narrow" on the CT scan; his doctor ordered an MRA to check on this tomorrow.

Mark can't be released to go home until his blood pressure problem is solved. He'll have antibiotics through Thursday for sure. On Friday, we're scheduled to meet with Dr. Johnston. He is Mark's transplant doctor and is in charge of officially releasing him. So, it's possible that Mark will be released on Friday. His doctor today thought that was probably pretty unlikely though. She thought Sunday or early next week was more likely.

Mark continues to eat better. He is still very tired, but I'm noticing improvement. We're both really starting to look forward to coming home.

I'll end with a funny story. Last week when Mark was at a very low point, I was struggling with bags and bottled water and trying to open the security door of our apartment and Mark was doing nothing to help me. I was so exasperated and just about to say as snotty as I could, "Don’t strain yourself!", but I looked over and saw him bent over trying to catch his breathe and not pass out. Oh, I guess he already was straining himself!

-Jen

P.S. I exercised today!

Monday, March 14, 2005 10:19 PM CST

Day 32 -

I start with thanks to Mark's fellow fire fighters who accomplished the Seattle Stairclimb. Hart Gilchrist, Tom Gust, Terry Coleman, Matt Ostendorf and Guy Mildon had a great trip and raised $4,000 for the Leukemia/Lymphoma Society! They drove down to Rochester on Sunday and shared their story with Mark. They brought a videotape they made on their trip, documenting their adventure. They also brought a t-shirt for Mark and a huge poster with Mark's picture on it with dozens and dozens of signatures collected at the Stairclimb. Mark was so touched by their visit and special gift.

Mark had a pretty good day today. He was craving steak this morning, so after a long morning and early afternoon of "no eating allowed" (because of his CT scan), we headed for Red Lobster. He enjoyed half of an 11 oz. steak and a baked potato drenched in butter and sour cream. It was an absolute joy to watch him eat.

His doctor didn't have many answers this morning; she said she would know more after seeing the CT scan results in the morning. Mark and I have concluded that the central line infection must have been playing a pretty big role in how he was feeling because his appetite and fatigue are much better already.

He is still pretty troubled by his shortness of breath. Wearing his mask on the Mayo campus makes breathing very difficult, but the dr. insisted that he continue to wear it because of the level of "crud" in the air everywhere within the clinic and hospital. We learned that his oxygen saturation is much better when sitting up or walking around compared to lying down, but also his shortness of breath seems to be related to huge drops in his blood pressure. So, when he gets up, his blood pressure drops and he becomes short of breath. It's still a mystery, but one that the doctors are working hard to solve.

I had a good day, catching a great mid-day nap and eating out with Mark. I didn't get my exercise in (ugh!), but promise to get back to it tomorrow.

In closing, here is the devotional passage that I read last night that felt so fitting to my experience. Despite my struggle with depression (which my friend Mary today suggested might really be absolute mental and physical exhaustion ?), I do feel God's presence everyday and it keeps me feeling strong. The passage was titled, "God's Mercy" and is from Max Lucado's book entitled, "God's Inspirational Promises."

"God's delight is received upon surrender, not awarded upon conquest. The first step to joy is a plea for help, an acknowledgement of moral destitution, an admission of inward paucity. Those who taste God's presence have declared spiritual bankruptcy and are aware of their spiritual crisis...Their pockets are empty. Their options are gone. They have long since stopped demanding justice; they are pleading for mercy."

Until tomorrow,
Jen

Monday, March 14, 2005 9:45 AM CST

Day 31 -

Mark has definitely turned a corner, at least in the food area. He actually ate toast for breakfast!! That's the first breakfast he's had since Day 4 (four weeks ago!). Joelyn took advantage of his increasing ability to keep food down and worked really hard all weekend to offer new foods that were appealing and didn't have any negative food associations. It was good timing, because I was at the end of my rope in the "feeding Mark" department. Having a fresh caregiver to get him back on the right track as far as eating goes was so important.

He is still very fatigued, but has started doing some things for himself. He'll now get up to walk across the room to get water or pills instead of waiting for me to get them. He actually cleaned out the humidifier and replaced the humidifier filter yesterday. He was so excited about that achievement. In his own words, "It's the first thing I've done to make myself useful in weeks!"

He had his central line taken out on Friday. They described it as a "very simple, short procedure"; however, in true "Mark-style" it took 45 minutes to "yank" it out. It wasn't very much fun, but he was glad to have it out. On Friday night, the nurse inserted an IV in his hand to receive his antibiotics and that was "a real pain" to deal with. On Saturday, he got a PICC line which is a short-term IV line in his arm. It's clumsy to work with too, but it beats the hand IV. It takes a lot longer to get his IV meds now, but hopefully he won't have to deal with it much longer.

His counts remain good. He got two units of platelets on Friday in preparation for the removal of his central line, so his platelets are still inflated from those transfusions. Hopefully, he'll have engraftment this week.

It looks like we'll be here through the week because the doctor wants him on these IV antibiotics for a full 10 (and maybe 14) days. His major "complaint" (although he doesn't complain) right now is shortness of breath. That's been getting worse since last week and is getting very bothersome. He's having a CT scan this afternoon to see if something is going on in his lungs to cause this shortness of breath.

Several people have asked about me lately. I have to admit that I'm having a pretty hard time right now. I've been challenged with generalized anxiety in the past, but I think I'm experiencing depression now. My past anxiety would cause me to over-achieve in the hopes of controlling and managing all of the things that were "scary." But what I'm finding with this depression is that it's demobilizing (is that a word?). It's hard to get things done and I want to sleep all the time. I'm sharing this not to concern people because I'm getting help (through therapy and meds), but to let people know how I'm doing. My friend Jules is encouraging me on a DAILY basis to exercise and took the kids both Saturday and Sunday so that I could exercise. I know that will help and I feel I have the support to keep that up. My parents came down early yesterday and spent 45 minutes just going through the things weighing heavy on my mind and helped me generate a plan for each (including taking many chores for themselves). I read a great quote in my devotional book last night that was helpful and that I wanted to share, but I'm posting this at Mayo this morning and don't have the book. I'll share it tomorrow.

I got our computer back this morning, so hopefully I can get back to daily postings. :)

Thanks to all of you for your love and care.

-Jen

Friday, March 11, 2005 10:10 AM CST

Day 29 -

Hello all. Didn't get an update written yesterday because we had to take our laptop back into the shop. We really got nailed with a mean virus.

Yesterday was another tough day -- more of same -- fatigue, vomiting, real misery. He met with Dr. Hayman (a favorite doctor from several weeks ago) and she was ready to take action. She scheduled the removal of his central line for today. It now contains 4 bugs and even though his blood cultures are looking better, the line continues to be a constant source of infection and she wants it out.

Today, Mark is actually feeling a little better. Dr. Hayman just scheduled an appointment to meet with Infectious Diseases. "It's been too long to be feeling this poorly." She wants to get their input which is big relief to me. I'm glad they are removing his central line, but I'm not convinced that's all going on.

He'll have to get all antibiotics and medications through an IV in his hand now, but it should be for just a few days. We're still hoping to be heading for home by late next week, but we'll have to see how he does this weekend.

Mary Herfurth brought Isaac and Corrine down to Rochester last night. Isaac and Corrine spent the night and are heading back to Roseville with me later this afternoon. Joelyn is coming down to care for Mark.

It's been hard work for Mark to have the kids here, but it's been good too. He's getting lots of hugs and kisses and special drawings too.

Now if we can just get the food to stay down. We talked about IV nutrition or appetite stimulants, but everyone on the medical team is convinced that removing his line is going to make all the difference.

That's it for now,
Jen

Wednesday, March 9, 2005 11:31 PM CST

Day 27 -

Mark thinks he might be feeling better today. His cough is still bad, but his fatigue is slightly better. His oxygen saturation is pretty low (90 it should be in the upper 90s. His nurse gave him oxygen this morning and his levels started fluctuating between 91-94so the doctor decided he was "clinically stable" and could continue outpatient. She seriously considered admitting him to inpatient; Mark was SO relieved when she decided against it. This low oxygen saturation is definitely contributing to his fatigue.

His white blood cell and neutrophil counts remain strong; however, his hemoglobin dropped to 9.1 (from 10.2 yesterday). That was so disappointing because his red blood cell transfusions in the past have carried him for a week or more. His platelets dropped from 25 yesterday to 16 today, so he's still working on platelet engraftment.

He's been dealing with uncomfortable fluctuations in how warm or cold he feels. He hasn't had fevers, but he's often chilled or too hot. Tonight he thinks he may have figured out part of the problem -- his bald head. He wore one of his fleece hats (from Lindy :)) all evening and stayed very comfortable for most of the time. He's always thinking about what's going on and how he might be able to solve it. I always love hearing his theories. You can imagine the many he's generated in these last 10 days of misery!

Sue Christiansen brought Allison and Luke down for a visit tonight. It's been two weeks since they've seen Mark. They both took many opportunties to sit in his lap and give him kisses and hugs. Mark was obviously tired, but stayed awake and did his best to enjoy the 4-year-old energy. As scared as I am about managing both kids and Mark's recovery, I'm starting to get really anxious to get home and be a family again.

We're both hoping for a big turn for the better tomorrow. As always, THANKS for all of your encouragement. We loved reading about the results of the StairClimb today. We are so PROUD of Firefighters Matt, Tom, Hart, Terry and Guy, who all finished the challenge! Way to go!

Until tomorrow,
Jen

Tuesday, March 8, 2005 10:53 PM CST

Day 26 -

I wish I had good news to report, but I don't. Mark is as miserable as ever. He's to the point of wishing he were back to those tough, early days after the transplant when his sore throat hurt so bad that he couldn't eat (that's how bad it is). At least then he had the energy to read the newspaper or watch T.V.

The "susceptibilities" were back on his cultures this morning. They showed that his Staph infection is "Susceptible" to the Vancomycin antibiotic, so that's good. His Gram Negative Bacillus (which will have a specific name later this week) is only "Intermediately Susceptible" to the Cefepime antibiotic, so they changed that antibiotic to Mirapenem (sp?). He got his second dose tonight, so hopefully that will help soon.

He continues to battle overwhelming fatigue today and his appetite and nausea is as bad as it's ever been. He continues to work very hard to get his calories in and works equally hard not to throw them all up. His cough is worse and comes in bouts that last over an hour and is painful and distressing (for both of us).

It's hard to report how hard it is right now because I know you all are praying for healing and better news. Please keep it up. Mark continues to believe he will be feeling better "very soon!"

We actually do have good news in that his blood counts were fantastic today. His white blood cell count jumped to 3.7 (that's actually in the NORMAL range!!!) and his neutrophil count was 1.94 (remember when 0.5 was the goal for weeks!). His hemoglobin was 10.2 (thanks to those two units of red blood cells last night -- GO DONORS!) and his platelets were 25 (thanks to his transfusion last night -- GO DONORS!).

A quick thanks to the Bill Mengershausen, head of the Risk/Reward Department at U.S. Bank who has given 4 free vacation hours for a drawing to encourage his employees to donate blood next week...and thanks to my six co-workers who have already signed up. Bless You!

Our laptop is still at the shop, so thanks to Jules for posting the update tonight!

Jen

Monday, March 7, 2005 5:26 PM CST

Day 25 -

Another long day for Mark. He spent 2 hours at the hospital this morning, getting fluids and his antibiotics. He is back now for another 5 hours, getting a platelet transfusion, 2 units of red blood cells and more IV antibiotics.

He decided this morning that, "If I'm not feeling better today, I'm just going to make myself feel better. I'm really tired of feeling so lousy!"

Our laptop got hit with a virus and is at the PC repair shop across the street from our apartment. I'm taking advantage of the long hospital visit tonight and am using the Mayo Patient Communications Center to catch up on e-mail and write my CaringBridge journal.

They are expecting Mark to need IV antibiotics for another week or so. Hopefully his platelets will engraft by then, so he can be free from multiple doctor visits a week when we get home. The fact that his stem cells were harvested from his bone marrow rather than his peripheral blood does result in slower (sometimes much slower) engraftment of the platelets. But our nurse explained tonight that he has to be making many of his own platelets or he would be needing transfusions more often, so engraftment is on the horizon.

Please keep prayers and encouragement coming for Mark. He's hit a rough patch, but is optimistic and strong as ever!

That's it from Rochester today.
-Jen

Sunday, March 6, 2005 10:47 PM CST

Day 24:

Good News – Mark’s WBC counts continue to climb. Dr. Ansell gave him an A+ on his blood counts this weekend. His platelets continue to drop but only by a few points each day, so they are delaying a transfusion to see if his body can start catching up and engrafting platelets.

Bad News – I finally convinced the medical team on Friday that Mark’s fatigue was NOT run-of-the-mill transplant fatigue. I noticed it was getting worse rather than better and had become quite debilitating. Despite the absence of fever and presence of excellent blood counts, the doctor ordered blood cultures on Friday. We were unpleasantly surprised to learn on Saturday that his blood is testing positive for Staphylococcus and Gram negative bacillus. These are serious, but common infections in transplant patients. Mark was restarted on twice-a-day I.V. antibiotics (Vancomycin and Cefepime) which should have no problem knocking these infections out. Mark is still miserable tonight, but his nurse thought that by tomorrow night, he should start feeling better. His cough is getting worse too, so the nurse promised to prompt the doctor for a chest x-ray in the morning.

The kids and I had a good weekend – my parents hosted us and the Jackson family (Randy, Jules, Ethan, Abby, Gracie and Nickie) at their lakehome north of Brainerd. The kids (despite major sleep deprivation) played excellently with each other and had a great time! The grown-ups (despite sleep deprivation) had a good time too! I got a lot of attention and TLC from Jules and Randy and lots of opportunities to vent about the difficulties I am facing. It was exhausting, but nourishing as well. My parents fed us well and helped with the kids and had a good time too. They were dragging though when they arrived at our house just 30 minutes after us, knowing they have a full week with the kids ahead. Sometimes I wonder how we’re going to keep this up even if it’s just a few more weeks.

Enough of that…I’m in Rochester and hoping for the restful night I need to wake up and face another week (hopefully our last) in Rochester.

-Jen

Thursday, March 3, 2005 11:02 PM CST

Day 21:

White blood cell engraftment is complete! His WBC count was 2.1 today with ANC of 0.89. They stopped the growth factor shots (which stimulate white blood cell production), so his counts may drop a bit before continuing to climb. The next milestone is platelet engraftment and the doctor hopes that will happen over the weekend. If his platelets can stay above 20 for three or more days, they will consider that success. So, they are predicting that Mark will be “released” from daily hospital care early next week and can think about going home.

I wish I could say he is feeling better. He thinks he’s actually feeling worse than a week ago. The fatigue is absolutely overwhelming. Every movement is an effort and it’s even hard for him to get comfortable when resting. His body seems to be having trouble adjusting his body temperature and although he’s not having fevers, he feels chilled often. The doctor STRONGLY ENCOURAGES outings now, so he attempted a 15-minute grocery store trip with me and we went to Red Lobster for dinner. Both experiences were not very enjoyable, but he made it through!

His good friends Jim Christiansen and Bruce Satterlund are coming down to care for him this weekend. Thankfully his care is getting much easier. He's eating much better, although it’s still a chore for him and he’s down to just a half dozen medications each day. I’m sure they’ll have a good time and provide good distractions for Mark.

We had a visit today from one of our favorite chemo doctors from last fall, Dr. Thompson. She’s been following his progress via daily reports that she can access on her computer. She stopped by while Mark was back at the hospital getting magnesium today. It was so nice to see her friendly face and it was an amazing reminder of how far Mark has journeyed since his salvage chemo last fall. She was the doctor who helped us get through the “trachea crisis” in November and the one who INSISTED that Mark attend the Fire Department Benefit. She is an absolute gem of a doctor and a wonderful person too!

Hoping KSTP will actually air the story on the Roseville Fire Dept and Mark tomorrow. If they don’t, maybe they’ll share a tape of the story with us anyway. Best wishes go out to Hart Gilchrist, Guy Mildon, Terry Coleman, Matt Ostendorf and Tom Gust, the Roseville firefighters who are heading to Seattle for the Stairclimb Challenge. Best of luck! Our thoughts are with you.

-Jen

Wednesday, March 2, 2005 11:36 PM CST

Day 20:

Like Mark’s good friend, Greg Logajon just wrote to us, “It was probably a tough choice for the KSTP Newsroom Director. Mark Schmaedeke and The Roseville Fire Department or Randy Moss and The Oakland Raiders? Hmmmm…. For those of you who didn't watch the 6:00 News tonight, the Roseville Fire Dept/Mark story did not air because they had to cover the trade of NFL Randy Moss to the Oakland Raiders.

It was an interesting (in a good way) day though. Mark got a call late yesterday from Roseville Fire Dept. Chief Rich Gasaway asking if KSTP could contact him regarding a story they were doing on the RFD firefighters doing the Stairclimb Challenge in Seattle. At noon today, journalist JoAnn Bemoras and Cameraman Lee were in our apartment interviewing Mark. Mark did a fantastic job, of course. He was determined not to break down, but did anyway – duh! It was amazing to watch him. For being so “foggy”, I thought he was very articulate and clear-minded. My interview (which I was not prepared for) was very uncomfortable for me. Thankfully, it was very short. But then, it got worse. They spent 40 minutes videotaping us going about our day. For Mark, this usually means sleeping! We had to work hard to come up with some activities for him. So, I made lunch (inches from that big camera!) and then we ate lunch and then Mark read his e-mail. I filled the pill caddy and reviewed meds with Mark. Oh boy! It was very strange, but we love the fact that they are highlighting the firefighters going to Seattle and we only hope they show but a minute or two of Mark sharing his story (when it airs tomorrow night).

Back to the medical stuff. White blood cell count was up to 2.2 today with ANC of .74. Second day of engraftment. Yeah! His platelets dropped again, so he needed a transfusion today along with fluids. They were ready to transfuse at noon, but we told them Mark had other “priorities.” They played along and let Mark come back in the late afternoon to finish up. Of course, they were disappointed that he didn’t achieve stardom today on the 6:00 News, but they are counting on it for tomorrow.

That’s it from Rochester!

Tuesday, March 1, 2005 11:42 PM CST

DAY 19:

First day of white blood cell engraftment! His neutrophil count hit 0.54 today. His white blood cell count is up to 1.7. His platelets dropped to 16, but they decided not to transfuse because platelet engraftment should be coming soon and they’re hoping his platelets will start climbing on their own.

Mark thinks he might be feeling a little better today. Good friends Shana Crosson and Peg Cavanaugh visited me today (which is another story :)) and brought Girl Scout cookies. Mark saw the Thin Mints from afar and his memory urged him to GET UP and get those cookies! But by the time the message got to his legs and stomach, he remembered he had no desire to eat even his beloved Girl Scout cookies. He did manage to eat four later (to hit his calorie goal for the day) and realized he did enjoy them. We'll try for five tomorrow!

Channel 5 (KSTP-TV) is coming to interview Mark tomorrow for a story they are doing on the Firefighter Stairclimb Challenge taking place in Seattle this weekend. Several Roseville firefighters have been training hard and are going to Seattle to participate and raise money for the Leukemia/Lymphoma Society. They are climbing 69 flights of stairs in full gear (70 lbs) on air (which Mark tells me makes it harder) – can you imagine? There are expected to be over 1000 firefighters participating. We’re not sure when the story will air, but I’ll let you know if and when I find out.

If you’d like to contribute to this great fundraiser, tax-deductible contributions can be sent to:
The Scott Firefighter Stairclimb, Roseville Fire Team
The Leukemia and Lymphoma Society
530 Dexter Ave. N., Suite 300
Seattle, WA 98109

Can’t thank you enough for all the wonderful thoughts, messages, love and care we are receiving. We often wonder how we would be surviving without it. You all have made this journey the best that it can be!

Monday, February 28, 2005 11:33 PM CST

Day 18:

It’s getting to be a lot like that Groundhog Day movie where we just keep living the same day over and over. At least we’re getting the hang of it!

Mark continues to feel lousy and eating remains a big chore. The doctor clarified that Mark should be taking care of his own calorie intake before we go home. He set that as a goal for Mark in the next day or two. Mark didn’t come close today; he was just happy to get through the day meeting his 2000-calorie goal and not throwing up. I would have to agree; that was success for today!

His blood counts are improving. Our dietician tried to encourage Mark by telling him that sometimes when the blood counts come up too fast the patient has a lot of problems with nausea and blood pressure issues. So, “slow is good” is our new motto. His white blood cell count is 1.2 today (up from 0.9 yesterday) with an ANC (absolute neutrophil count) of 0.4 (engraftment = 0.5+ for three consecutive days). We’re hoping for an ANC of 0.5+ tomorrow! His platelets were borderline transfusion-level, so I’m sure he’ll need those again tomorrow.

Mark continues to sleep all day long. He got on the treadmill again tonight though and is happy about getting that back into his routine. Phone calls, visits, cards, e-mails, and website entries continue to be his only connection to the real world and the life he has ahead of him, so keep them coming please! THANKS!

Sunday, February 27, 2005 10:58 PM CST

Day 17:

Mark's counts rebounded over the weekend. His white blood cell count today is 0.9 with a neutrophil count of 0.25 (0.5+ for three consecutive days = engraftment). His hemoglobin remains stable at 9.7. He got another platelet transfusion this afternoon because his platelets were 11 this morning. Platelets should start engrafting (later this week?) after his white cells engraft.

Mark continues to feel very lousy. Joelyn got him on the treadmill yesterday and today; hopefully a little activity will start helping him feel better. He's still fighting nausea and overwhelming fatigue. The doctors are not surprised by how he is feeling and just continue to praise him for his progress.

I had a very good weekend with the kids. They let me sleep in both days and did a "better-than-average" job playing together and staying occupied. Andrea helped out Saturday morning and Gayle came over Saturday afternoon and got us through dinner and bedtime. Isaac and Corrine enjoyed playdates on Sunday and my parents arrived at 5pm to help with dinner and do bedtime. Two months ago, I remember being very anxious about this weekends of "single parenting" (of course I am getting lots of help), but these weekends have actually been a much-needed break from caring for Mark and great opportunities to reconnect with the kids. I've stuck to my goal of "accomplishing nothing but connecting with the kids" each weekend and that's made such a difference.

I'm still feeling a lot of anxiety about the transition back to Roseville, but I'm getting a lot of planning and idea generation from friends Sue and Jules. It helps just to talk about it.

People have asked how the drive back and forth goes. Is it hard to stay awake? be alone? not be bored? Although I often dread it, it's actually a very peaceful experience and gives me just about the exact right amount of time that I need to transition my thoughts from caring and connecting with the kids to caring and connecting with Mark. Another reason I am so GRATEFUL that we chose Mayo over the U of M.

Praying for neutrophils flowing freely tomorrow and in the days to come!

-Jen

Friday, February 25, 2005 9:11 PM CST

Day 15:

Mark started the day feeling “wobbly and foggy.” By “wobbly” he means a combination of nauseated and dizzy. Oh joy! He was too nausea to even attempt breakfast, but he did manage to keep down a glass of juice. At the hospital, the nurse gave him Kytril again (anti-nausea) as that seemed to make a difference yesterday. By “foggy” he means that it’s hard to concentrate or stay focused. Answering the nurse’s questions is taxing and frustrating. His resting blood pressure remains high and there was a thirty point drop to his standing blood pressure, so he had another long morning at the hospital getting fluids.

He continues to be exhausted which isn’t a surprise. He’s given in to the fact that he needs to sleep most of the day. Our friend Sue Christiansen drove down (again this week!) to have lunch with us today and we spent time brainstorming solutions for our transition home. We asked Mark if he wanted to join in. He said he would, but he wanted to do it from the living room where he sat (we were in the kitchen nearby). The next thing we knew, he was stretched out on the couch, sound asleep.

Blood counts were discouraging today. His white blood cell count dropped to 0.3 (from 0.7 yesterday) which isn’t an unusual thing to happen. There were too few cells to do a differential today, so we didn’t get a neutrophil count. His platelets increased from 19 to only 23, despite a platelet transfusion last night. I’m sure he’ll need another one tomorrow. And his hemoglobin took a big hit, dropping from 10.7 to 9.3. The medical team is not discouraged and we knew there would be setbacks, but it seems easier to watch Mark's misery if his blood counts are at least good, but when those are bad too, it feels like a double hit.

I’m home in Roseville for the weekend. Mark’s sister Joelyn is with him for the weekend. Mark remains optimistic and is fighting with amazing strength and courage. I’m incredibly proud of him and so grateful for everyone backing him up!

Thursday, February 24, 2005 10:58 PM CST

Day 14:

Mark feels about the same today, but he thinks the extra sleep is paying off. He did have vomiting episodes last night and this morning, so the nurse ordered Kytril, an extra anti-nausea drug for today.

His white blood cell count was 0.7 today – yeah! There were enough white blood cells that they could “take a differential” today. That’s where they measure three different kinds of white blood cells – neutrophils, monocytes and lymphocytes. Engraftment is considered complete when his neutrophil count is above 0.5 for three days in a row. Today his neutrophil count was 0.17. We should see jumps everyday now!

His platelets dropped again today (to 19), requiring a platelet transfusion tonight. Hopefully, by next week sometime, his platelets will engraft too and he won’t be dependent on platelet transfusions anymore. His blood cultures have been negative for “bugs”, so he gets to stop his Vancomycin antibiotic tomorrow. That will buy us at least an hour every morning.

His feet and ankles are still swollen. His nurse asked him, "Are you able to do quite a bit of walking?" Mark replied, "Yes." I was shocked because he hasn't been doing any walking. I called him on it, saying, "You haven't done any walking!" He replied, "I know, but I'm able!" Ugh! The nurse then encouraged both of us to get out and start walking!

Jerry Wille came and stayed with Mark and got him to the hospital tonight while I drove to Roseville for Isaac’s school conference. I was pretty desperate for Mrs. Iyer’s perspective on how Isaac is doing and I knew a conference would help me out. She had some surprises for me (Isaac cried today when Mrs. Iyer delayed the handing out of a special dental bag and Isaac has been staying inside for recess most days -?!?). Academically he’s doing well and she is amazed at how well he is holding himself together. We talked about the natural tendency to use “compassion grading”, grading work with special consideration for what a student is going through. She said she’s been deliberately not doing that and I supported that and emphasized how much we wanted her to hold high standards for Isaac. It was a good conversation and mostly reassuring.

Speaking of reassuring news, I have to send a special thanks to Miss Tyrer, Corrine’s Kindergarten teacher. She has gone out of her way to send frequent updates on how Corrine is doing. She e-mails short stories which reassure us that Corrine is doing well. She’s also having her class write a weekly letter to Mark, summarizing their week, as a way to show support to Corrine and give her and her classmates an opportunity to talk about what’s going on. Miss Tyrer has been a special gift from God this year!

I’m back to Roseville tomorrow to care for all four kids for the weekend. Of course, I have lots of help lined up, so I’m sure it will go well. Corrine called tonight sobbing and Isaac called with some anxiety on Wednesday night, so I know it’s getting to be very hard for those two, in particular. Like Mark said tonight, “if we can just keep the wheels on for a few more weeks, we’ll be fine.”

God Bless You All!

Wednesday, February 23, 2005 10:50 PM CST

Day 13:

Mark is feeling crummy again today. The doctor and nurses are not surprised. It will take weeks to recover. I think it's hard because he was feeling so much better just two days ago. It's hard to go backwards.

I started wondering if he’s getting enough sleep, so today we focused on more sleep. He got a short nap at the hospital (instead of reading the newspaper like he usually does) and a 2-hour midday nap and then a 3-hour late afternoon nap. The doctor was explaining too that nausea often gets worse as patients transition to solid foods because they are challenging the digestive system. So, we’re changing the timing of his anti-nausea drugs to see if we can help with that.

His white blood cell count stayed at 0.4 today. The doctor expects a jump over 0.5 tomorrow. His platelets were 28, helped by the platelet transfusion last night. The nurse explained that platelets are the last to engraft, so it’s not unusual for transplant patients to need platelets every other day until engraftment occurs. His bloody nose continued well into the night, but was under control today.

His potassium was 3.7 (normal!) today and his orthostatic blood pressure is good. His blood pressure is running high (140/80), but the medical team much prefers that over low blood pressure and 140/80 is not bad. His legs, ankles and feet have started to swell. The doctor was actually pleased to hear this because it means he’s FINALLY catching up on fluids. He explained that as he increases his activity, his leg muscles will work to pull that fluid out into his system.

He got a new Fentanyl patch for pain today, but he is totally off the Oxycodone. As soon as his nausea is under control, the doctor wants to get him back on the Amantadine (anti-flu). The doctor said there is no way he’s letting Mark back into the general population without that protection. I finally have a handle on his 20 medications. I made a chart for Joelyn and David to use over the weekend and it really turned out to be helpful for me too.

Mark continues to do well with calories. He ate all “real” food again today and although it was hard, he did well and hit the 2000 calorie mark. Meeting calorie requirements along with adequate blood counts and adequate “stable” (no falling, dizziness) activity are the three requirements for going home to Roseville. The medical staff is starting to talk about going home. The idea still puts me into a panic and Mark sure isn’t ready to tackle the prospect. Mark suggested today that they are just planting the idea as the first step in the transition. We chuckled that it’s probably motivating for most people, but for us it’s just plain scary. To balance Mark’s needs with the rest of the family’s seems overwhelming right now.

Sue Christiansen brought Allison and Luke down for a visit. I hadn’t seen them for 10 days(!) and Mark hadn’t seen them for two weeks. It was a good visit. We had the chance to talk to Sue about this transition of “going home.” She suggested that we put time into planning and preparing for it just like we did for the transition of moving to Rochester. As we talked about it, I realized that this transition may be one of the hardest parts of this whole experience, so it does deserve attention. Sue is coming back on Friday morning to spend time with me and she suggested we do some brainstorming.

Mark has had a few roommates in the past few days that are on Day 4, 5, 6 of their transplant process. Although it’s hard to see them suffering, it helps him see the amazing progress he has made since just last week. He’s also had the opportunity to cheer them on and give them encouragement. That’s been very therapeutic for Mark.

Tonight, Mark interrupted the silence with the words, "summer sausage." What? Mark said, "I think I'd like some summer sausage." This is the first time in weeks that he has been able to articulate an interest in food of any kind. He convinced me not to run out tonight to buy some, but I'll do it first thing in the morning. Hopefully, it will still be appealing by lunchtime. :)

Until tomorrow…

Tuesday, February 22, 2005 10:47 PM CST

Day 12:

Mark isn’t feeling well today (fatigue, nausea, sore throat--same old stuff), but other than that, it’s all good news today!

His white blood cell count jumped to 0.4 today. His doctor and nurse were very encouraged by that. He is definitely producing cells and it’s just a matter of time before they fully engraft. He rated his throat pain as 3 (out of 10) today, down from 8 just two days ago. His nurse explained that that is evidence that white cells are at work too. They expect that his counts may drop tomorrow, but by the end of the week his neutrophil count should be over the 0.5 “neutropenic” threshold.

His hemoglobin is up to 10.6, thanks to the two units of red blood cells he got yesterday. Which reminds me, I have been meaning to make a plug for blood donations for weeks now. Mark’s red blood cell and platelet transfusions literally have kept him alive for the last two weeks. So, if you’re wondering what you can do “for Mark”, call the Red Cross at (651) 291-4600 and find out where you can donate blood. Your blood will not directly help Mark, but it will replace the blood that Mark used and will help another family in our situation.

His potassium was finally in the normal range today (yeah!) and his platelets were o.k. at 28, but an on-and-off bloody nose all day resulted in a platelet transfusion tonight. We coordinated it with his 8pm antibiotic treatment and watched our "Law and Order" show at the hospital. Only four hours at the hospital today!

Roseville Fire Department Chief Rich Gasaway and Assistant Chief Tim O’Neill visited Mark this afternoon. They have great senses of humor so Mark got in a lot of laughing and just plain fun talking “fire department shop.”

Late this afternoon Randy and Jules Jackson came down for a visit. These two are very dear friends and have helped us through the hardest, darkest moments when my sister Liz died and when Mark has been so sick. Their kids are our kids’ ages, so we have lots in common and they and their kids have been a great support for our kids as well. It was great to have 3 hours of pure “couple-time” with them (a first, I think?!?). Thanks to Amy Hanson and family and Jules' dad, Steve and Cindy for taking care of Ethan, Abby and Gracie so Jules and Randy could come!

Mark ate all “real” food today, although it’s difficult to eat because nothing is appealing and he still has bouts of nausea. His biggest complaint today was his extreme sleepiness (he’s been dealing with this since he started pain meds). He can’t read for more than 10 minutes without falling fast asleep and having conversations (while great for his spirit!) are exhausting.

All in all a pretty good day!

Monday, February 21, 2005 10:20 PM CST

Day 11:

Joelyn handed off care to her husband, David Enge, yesterday and he did a great job caring for Mark until Isaac, Corrine and I arrived this afternoon. (Thanks David and Joelyn for a great weekend of care!).

Mark had another very long day in the hospital (11 hours), receiving 4 hours of IV potassium, one unit of platelets and two units of red blood cells. So, it’s obvious that his bloodwork still shows that he’s very dependent on outside support, but he’s actually feeling better. His sore throat is much better and he ate his first solid food in a week tonight (a grilled cheese sandwich)! I was so excited.

His white blood cell count (WBC) has measured 0.2 for two days in a row (which feels like improvement), but “engraftment” is defined as a neutrophil (which is one component of the blood) count higher than 0.5 for three consecutive days. Our nurse tonight predicted that because Mark’s stem cells came from bone marrow rather than peripheral blood that engraftment might not occur until Day 14 or after. Peripheral blood stem cell transplants usually result in earlier engraftment (Day 10 – 14). It just feels so good to see Mark feeling better, that I feel like I have a lot of patience. Maybe I’ll be feeling different by the end of the week.

Mark’s potassium remains very low (3.0), despite 500ml(?) / 4-hr-IVs of potassium everyday since Friday. The nurses have explained that “making cells” requires a lot of potassium, so we’re taking his shortage as a good sign (assuming it doesn’t cause heart issues which it can).

Our neighbors and good friends, Sarah, Jim and Marcy McNeal, picked up Isaac and Corrine at Rochester Methodist Hospital tonight and brought them to the Bjorks in St. Paul where they will be staying for the week. For some reason, parting from Isaac and Corrine tonight was the hardest “separation” experience I have had so far. I think it’s just getting to be long and hard to have our family spread in so many directions (going on six weeks now). We just CAN’T WAIT to be together as a family again (see, already I’m sounding impatient!).

I'm determined to take care of myself this week. Shana Crosson and husband, John, got me off to a great start by sending along a care package with one-serving snacks and meals for the week. Isaac, Corrine and I checked out the Rochester YMCA today and after swimming today, I was reminded how important exercise is. So --- hoping that by writing this, I'll be able to remember this advice to myself!

More tomorrow…

Saturday, February 19, 2005 2:52 PM CST

Day 9:

The hand-off of care is complete! My parents are back in Backus with Luke and Allison for the long weekend. I’m back in Roseville with Isaac and Corrine and Joelyn is in Rochester caring for Mark. As hard as it was to leave Mark, I am grateful for the break.

Joelyn had her hands full the moment she arrived at the hospital. Mark had been called back to the hospital at 4pm because his potassium was ‘critically’ low (3.2). The nurse explained that our bodies have a limited range of acceptable potassium levels before heart arrhythmias can start.

Mark also was having a psychological reaction to one his drugs and we spent quite a bit of time trying to figure that out yesterday. He was sure it was the doubling of his fentanyl patch so he demanded that I remove one (that alone was a sign, because he's rarely demanding). I did get permission from the nurse to do that, but later the CNP convinced him to put another one on. She concluded that his ‘crazy, sleep-disturbing dreams’ and ‘overwhelming sense of danger looming’ was being caused by Amantadine which is an anti-flu medication he takes twice a day. The unit has had many patients complain of bad dreams and agitation and it’s gone away when the Amantadine is stopped. So, Joelyn worked with the medical team last night to weigh the risks and benefits of switching meds around. They finally decided to put the fentanyl patch back on, but stop the Amantadine and use the Oxycodone pain med only when necessary.

This morning, the doctor disagreed because of the risk of the flu. Even though Mark was vaccinated in November, all of his antibodies and vaccine protection (that he’s ever received in his life!) are gone, destroyed with all of his bone marrow by the high-dose chemo! So, she wants him back on the Amantadine or something similar. But she thought it was worth waiting until tomorrow to see if stopping it decreased his dreams and other negative thoughts.

His blood counts were LOW across the board this morning. His white blood cell count remains at 0.1 (not a surprise). His platelets dropped to 16 (and he started urinating blood), so he’s getting a platelet transfusion this afternoon. His hemoglobin dropped to 8.1, so he’s also getting a red blood cell transfusion. His potassium is still low, so they gave him more I.V. potassium and are sending him home with oral potassium to add to his 10? medications he is already taking! He and Joelyn arrived at the hospital at 9am this morning and don’t expect to leave until 7pm or later. A long day for sure!

Joelyn got Mark started on Dairy Queen today. He’s starting with a small cookie dough blizzard (720 calories!) and hopes to down a medium vanilla shake too (760 calories!) For those of you who missed Molly’s website guestbook entry (she’s our future sister-in-law who works at the Hopkin’s DQ), she claimed Mark might be running marathons if he were eating DQ instead of Culver’s. So Molly – today’s the day. Not sure the calorie counts are very good advertising for DQ though!

I’m enjoying a very restful day at home. I was greeted last night by neighbors Shana and John (who were taking care of Isaac and Corrine until I got home) with a glass of wine and listening ears. I thoroughly enjoyed bedtime stories and snuggles with the kids, despite my overwhelming fatigue. Today, Isaac and Corrine are challenging me with quite a bit of bickering and physical fighting, but I’m trying to be sensitive to the stress they surely have built up inside too. We have planned for lots of fun and time together this weekend, so I’m hoping they’ll hit next week with a few reserves.

As always thanks for the cards, notes, e-mails, phone calls, visits and prayers. I left Mark at the hospital on Friday morning and came back to the apartment to clean. I was really struggling to muster the energy to even get started. Then I sat down and read the latest website guestbook entries and that did it. I had the strength and courage to carry on with the day!

Check the “Photos” link for three new photos!

-Jen

Thursday, February 17, 2005 11:15 PM CST

Day 7:

Another long day, but fairly uneventful (thankfully).

Our usual outpatient doctor (Dr. Hayman) was out of the hospital today (heaven forbid!) and we had our first very frustrating Mayo experience. The person in charge of Mark’s care today was a Certified Nurse Practioner and hopefully that had nothing to do with her lack of care. We had to convince her to give Mark fluids and she had to be reminded three times over three hours to write a prescription for Mark’s new pain meds (oxycodone -- no tylenol with his potential for fevers). This set him back 1 ½ hours on his pain med which the R.N.s have drilled into us that we should not let happen! Like our R.N. Kristen said (who was awesome today), when you’re in the middle of the “no white blood cell count days” you just need things to go as smoothly as possible. That helped because I knew this wasn’t a huge deal, but so aggravating anyway. Kristen is probably right; last week or two weeks ago I could have handled all of this in stride. They did urge Mark to double his Fentanyl patch which he agreed to reluctantly because of the small risk of decreased respiration. We’re hoping it will help with the diarreha too.

We were pleased to see that his resting pulse was down today. Yesterday it was 145! Today is was in the 127-130 range. His blood pressure has been very low since yesterday and the nurses are working hard to convince us that 80/50 is o.k. They've explained that it's "normal" for transplant patients and as long as he isn’t feeling dizzy when he stands, it isn’t dangerous. I don’t know; that’s going to take some getting used to for me. His orthostatic blood pressure (difference between his lying down and standing up blood pressure) was less than the 20 point cutoff today and that gave the nurses confidence that he was doing o.k. too.

Our dietician thought Mark should focus on getting the diarreha under control today. In other words, focus on fluids and don’t worry about the calories so much. He has only lost 6 pounds this week and has met his caloric goals everyday, so she felt comfortable easing up on the caloric goal for today. I can’t tell you what a relief that was. It seems silly when I try to figure out why it’s so hard to just help Mark consume 2100 calories a day. But when he can’t eat any solids and every bite is excruciating and everything mentioned makes he feel like gagging, I guess I can rationalize why it’s hard. Anyway, I pressed her on what “easing up on the goal” meant (you know me; I like definition). She responded, “Just don’t force him to eat.” So, I said, “Then is 0 calories o.k. because that’s what he’ll do if I don’t force him to eat.” Well, no, that wasn’t what she had in mind. So, we negotiated for 1000 calories which turned out to be fairly managable for Mark today. I still had to force him and it was still VERY HARD, but it wasn’t ALL DAY long today. He also tried his first “solid” food today. He ate ½ cup of cottage cheese. Yeah!

The biggest excitement of the day was Mark’s hair loss. I never would have imagined that it was possible for a person to lose all of his hair in one day (without a haircut), but Mark nearly did it. Late yesterday afternoon, he started pulling his hair out in clumps. His pillow at the hospital looked like a cat had slept on it for months. By this morning, just pulling a t-shirt over his head resulted in hair in his eyes and mouth and his t-shirt looked like he had just been given a haircut without a gown on. It was incredible. Then he combed his hair and the comb looked like it had a ball of yarn attached to it. By noon, he couldn’t stand it, so I found a hair salon in the subway below the hospital and at 1pm, he got a buzz cut. It looks great and he feels so much better. I’ll post some pictures on the website this weekend.

His white blood cell count is still 0.1. As a result of his platelet transfusion yesterday, his platelets jumped from 6 to 16. That’s below the criteria of 20 for a transfusion, so he had another one tonight. He’s still on two antibiotics (a 1 ½ hour I.V. of Vancomycin twice a day (ugh!) and a 15-minute push of Cefepime, also twice a day). If his blood cultures are negative tomorrow and he stays fever-free (which he has done today), he will get to dump the Vancomycin which will mean shorter evening visits. His hemoglobin dropped again today to 9.6. That was expected, but he sure was enjoying the energy that came with hemoglobins in the 11s.

In closing, I can’t forget that we got great news on his chest x-ray. His chest is free from any infection, but as important, it looks like the defect in his trachea is “stable to somewhat improved.” I think we forgot to celebrate that as I think back on our day.

This experience is like none other I have ever experienced (although every once in awhile it reminds us of early first-time parenting of a newborn), but sometimes I get to the end of the day and try to figure out what happened. It’s like we’re not really present or like we’re somebody else going through these motions with people in medical clothes pushing us this way and that. We often wonder what will remain as memories as the years go by.

Enough already. More tomorrow…love to you all.

Wednesday, February 16, 2005 11:01 PM CST

Day 6:

Mark had a little more excitement than he had hoped for today.

He started the day feeling better. His diarrhea had subsided and that allowed him to sleep through the night. His pain meds seem to be helping his throat (and may actually be helping with the diarrhea too). As he puts it now, “I had no right to be cocky this morning!”

The doctor could tell by the way he walked into the unit that he needed fluids and his drop in blood pressure confirmed that. She ordered two liters of fluids, one with sodium and one with potassium. His bloodwork showed that he was low on magnesium, so she ordered that I.V. too. Unfortunately, that’s a laxative and so his diarrhea is back in force tonight. His stool samples were negative for anything dangerous, so he was allowed to start Imodium tonight.

His platelets startled the medical team because they dropped from 30 to 6; normally they transfuse around 20. He was given orders not to get out of bed without help because a bump to the head or anywhere else could result in internal bleeding. By the time they got his platelet transfusion on the unit, Mark was running a 101 temp. They typically don’t give transfusions when a patient has a temp because the temp can mask a reaction to the transfusion. They started him on I.V. antibiotics and eventually decided to proceed with the transfusion by late afternoon. He was finally released about 7pm (10 hours after arriving)! It was a long day.

We very much enjoyed a visit from good friend, Jim Christiansen. He arrived around 5pm and stayed until 9pm. Mark enjoyed reminiscing about fun times and catching up on the latest with Jim. It was a great distraction for Mark, comforting for me to have another caregiver present and lots of fun for all of us.

The evening ended with Mark’s first-ever chemo-related vomiting incident! It surprised us both and I have to say that I’m very grateful he had the good sense to turn around and hit the kitchen sink instead of the laptop he was sitting in front of! For several minutes, Mark stood at the sink, grieving all the hard work of eating "down the drain." Of course, the sink was full of dirty dishes which added a challenge to the clean-up, but who’s complaining?

Mark’s white blood cell count remains at 0.1, but today he started Neupogen. He had a roommate today who was at Day 12 and his white blood cell count had finally jumped above the magic 0.5 (dangerous threshold) today. So, it was encouraging to hear it might be as early as next week that Mark’s count could take a turn for the better. His hemoglobin took a huge hit today, dropping from 12.6 to 10.2. He’s definitely feeling more fatigued. In fact, he promised me he’d get into the shower after Leno’s monologue and the T.V. is off, but I see him just sitting in his chair, no doubt trying to muster the strength to get off the chair. Last night, he sat on the edge of the bed for 10 minutes, gathering the strength to put on clean socks after his shower. I really feel for him.

Hoping for an uneventful day tomorrow. I have to say as hard as each day has been, it’s hard to believe he’s now a week post-transplant and we’re getting through it!

Thanks for your continued support. It is essential to our healing these days!

Tuesday, February 15, 2005 11:05 PM CST

Day 5:

Mark’s first words today were, “OK, this OFFICIALLY is NOT FUN.” Isn’t that so like Mark? I made that claim weeks ago. I would definitely have other choice words to describe what this OFFICIALLY is…

His diarrhea is better, but the doctor insisted on two MORE stool samples before she’ll prescribe Immodium. That was pretty annoying. Couldn't she have told us that yesterday?

The killer today was a sore throat that worsened in the night to the point that each swallow is now excruciating. It’s bad enough that solid food is now impossible to eat. I knew it was bad when he jumped at the opportunity to take pain meds (the first time since he started cancer treatment 15 months ago). He started with a Fentanyl patch, but because that was going to take 15 hours to kick in, he agreed to tolerate 4 extra swallows today to get started on Vicodin.

My emotions bounced from fear and anger as I watched him suffer today to pride as I witnessed his focus on drinking and eating. He made his fluid goal and caloric goals by eating the 800-calorie-Culver’s shake and two cancer protein supplement drinks.

His white blood cell count remains at 0.1 today. His platelets dropped to 30, but his hemoglobin increased to 12.6! The nurse couldn’t explain this; we’ll have to remember to ask his doctor tomorrow. We’ll take it though.

I tackled medical bills for the first time this year. I shudder at the thought of it and have been putting it off for weeks. I finally decided to reward myself with a Nelson Cheese Factory Reuben sandwich (my new favorite, thanks to the Rochester Fire Department) and a bowl of cherry ice cream. Anyway, got on the phone with Blue Cross Blue Shield and was able to reconcile all 2004 claims! It was an exciting moment. Decided not to wake up Mark to tell him though, so that's why you all get to hear about it.

One last story…Isaac called tonight sobbing. This is the first time in five weeks that we’ve had a tear-filled conversation with one of our kids. He was feeling sad and scared but couldn’t tell us why. Mark rose to the occasion and talked it through with Isaac (even though it’s painful to talk) and found out that part of it was that he was disappointed that his “Uncle Paul Outing” had been rescheduled to Thursday. He hung up calm (obviously tired) and hopefully ready to sleep.

That was my and Mark’s day. Expecting something similar tomorrow with maybe a blood transfusion thrown in. I’ll end with a quote that Mark and I can really relate to today. I adapted it a little bit for our situation; it comes from Naomi Zikmund-Fisher’s “Across the Chasm” (journal of her and her husband’s bone marrow transplant experience). She wrote this on their “Day 4:”

“If it weren’t for that pesky ‘sore throat’ (she wrote “IV” because her husband was hospitalized) and the threat of death hanging over our heads, this might be an enjoyable respite. I know, picky me.”

-Jen

Monday, February 14, 2005 10:41 PM CST

Day 4 (Happy Valentine’s Day -- thanks for all the cards we received today!):

Mark’s white blood cell count hit bottom today at 0.1. His hemoglobin remains high (yeah!) at 11.9. His platelets took a big hit dropping from 71 to 40, so he’ll need a platelet transfusion by mid-week.

Despite achieving his fluid intake goals all weekend, Mark got IV fluids this morning. The doctor usually orders them if a patient’s blood pressure standing up is 20+ points higher than his blood pressure lying down. This is a sign of dehydration and Mark met this criteria this morning.

Mark also met his caloric goals all weekend; the dietician was very impressed with Mark and Paul as his record keeper and “coach.” Mark is having a lot of digestive/intestinal distress, so the doctor started him on Protonix and cultured a stool sample (too much detail?). If the culture is negative, he can start on Immodium too. He’s determined to keep eating and drinking no matter how uncomfortable he gets. The groans and grimaces are hard for me to hear and watch, but I’m very impressed by his lack of complaining.

Mark’s parents, Jim and Esther, Uncle John and Aunt Donalee visited us today. We were treated to pizza and homemade cookies and lots of fun conversation and teasing. Mark enjoyed that visit and continues to really enjoy and benefit from all the phone calls and website guest book messages he receives. Thanks for that support!

Sunday, February 13, 2005 11:11 PM CST

Day 3:

The end of our 4th week in Rochester...so hard to believe.

Mark is doing o.k. His white blood cell count took a big hit this weekend. His Saturday number was 0.6 (3.5-11.5 normal); Sunday was still pending when Mark and Paul left the clinic this morning. This number is expected to be 0.1 by Wednesday at which point they'll start giving him Neulasta to stimulate his bone marrow to up the production of white blood cells. So, he is on the borderline of a "dangerous" count (0.5) and is expected to stay here or lower for about two weeks.

On a positive note, his hemoglobin is hanging in there and definitely helping him feel the best he can feel. Yesterday it was 11.9! (his highest count since November 8th!).

He had a good weekend with Paul, meeting his fluid and caloric goals each day -- with a lot of help from Mary and Jerry Wille (thanks!). That protein goal is a lot harder to make! He is having quite a bit of digestive/intestinal distress and discovered his first mouth sore today.

Mark was surprised to hear that I was dreading the week. I explained how hard it is to watch him suffer. So, he came up with our motto for the week. "It's only temporary!" What a guy! What would I do without him?

I got a lot of care again this weekend with wonderful, nurturing meals on Saturday and Sunday. I got a lot of sleep, including two great naps and had some good quality time with the kids.

Thanks to everyone who is helping us through!

-Jen

Friday, February 11, 2005 7:58 PM CST

Day 1:

Mark is so glad to be out of the hospital. He didn't get home until 8pm last night because it took 3 bags of IV fluids to get rid of the dead red blood cells (which were a byproduct of the marrow transplant) that were in his urine. He urinated red(!) until 8pm. The one condition for his release was yellow pee!

He didn't feel the greatest today, but his blood counts are still good. His hemoglobin is 11.4 (13.5-18.5 normal) which is great. His platelets dropped to 99 (150-450 normal) and his white blood cell count is 2.6 (3.5-10.5). His white blood cell count will bottom out (as close to 0 as possible and still be alive) around Day 6 (Wednesday, February 16) and will stay there for 7 - 14 days. Those will be tough days, requiring blood transfusions and possibly IV nutrition.

Our nurse reviewed the 8 prescriptions that Mark will be taking regularly for the next 4 weeks. He'll take pencillin for the next year! He's also taking two anti-virals, an anti-fungal, another antibiotic, a steroid and two anti-nausea drugs.

We also met with a registered dietician who has set goals of 96 oz. of fluids, 2100 calories and 100 grams of protein a day for Mark. Paul arrived around 6:30pm and friends Mary and Jerry Wille brought over a great hamburger meal for us to enjoy together. We're pleased to report that this beautiful meal insured that Mark met his 2100 calorie goal today!

I have the luxury of hanging around this evening because Janet and Dean Van Nevel (who had Isaac and Corrine all week) offered to have all four kids overnight tonight. So, I'm enjoying hanging out with Paul and the Willes tonight and then drive home and crash for the night.

I've given Paul lots of instructions for the weekend. He's ready to go. I'm sure they'll have a great time together.

I'll write again next week.

-Jen

Thursday, February 10, 2005 12:56 AM CST

Day 0 -- Happy Birthday Mark!

Mark's transplant was very "boring" according to the nurses, just the way they like it. Mark did very well, having no blood pressure, allergic or breathing issues (which often happen). I'm tolerating the powerful "creamed corn" smell that he is breathing out and filling the room with, a side-effect of the preservative that the stem cells were packed in.

It was amazing to watch them thaw the stem cells, fill the syringes (I was wrong last night; the stems cells are infused via syringe, not IV) and infuse them into Mark. I videotaped and photographed the process.

That's it for now. Mark is ready to sleep away the afternoon....thanks for your many, many prayers and words of encouragement and support. We feel God's presence with us today.

-Jen

Wednesday, February 9, 2005 10:22 PM CST

Day –1:

Well, this is it. Tomorrow is the big day – transplant day. They call it Mark’s new “birthday” because it’s the day he will be “reborn” with his stem cells, the day he will be rescued from the lethal doses of chemotherapy he has received this week.

Corrine and I were busy all day getting ready for Allison and Luke’s 4th birthday party. We had a ball. Grandpa Loren, Grandma Connie, Great Grandma Alice, Isaac, Allison and Luke arrived around 5:15 and we enjoyed pizza and presents together at the apartment. Mark had to be back at the hospital at 7pm for antibiotics, so we caravaned over there and after getting Mark hooked up to his I.V., we sang “Happy Birthday” and had ice cream cake together. One of the highlights was sharing the cake with the awesome nursing staff.

By 8pm, we had the kids in pajamas and were loading them into Grandpa and Grandma’s van. Unfortunately, after such a great evening, the last ten minutes were chaotic and stressful as we realized we only had one of the twins’ blankets. Grandpa Loren quickly solved the problem by getting out his pocketknife and slicing the blanket in two. The blood-curdling scream that came from Luke probably was heard for miles. Isaac already had been in tears because of some previous scolding from me. Then he realized he had forgotten his balloon at the apartment…more tears. Before I could close the van door, Corrine burst into tears and I watched as they departed the parking ramp with 4 kids in tears. One of a mother’s worst experiences.

I went back to the apartment and buried myself in USBank work (believe it or not) as a distraction from the kid and Mark worries that I just couldn’t face anymore. However, I just got word from my mom, that the boys were asleep within minutes after leaving the parking ramp and the girls settled down too. They are now all safely tucked into bed (Isaac and Corrine at the Van Nevel’s) and sleeping.

Now, I can turn my attention back to Mark. Momentarily, I am heading back to the hospital to spend the night. Mark’s transplant process starts at about 4am when they start IV fluids. They will hydrate him for four hours before starting the 1-2 hour infusion process. After the stem cells are transplanted (via IV into his bloodstream), he will receive another 4 hours of hydration. All of this hydration is required to flush the preservatives (used to store the stem cells) from his body. We expect to be done by mid-afternoon.

This morning, Mark asked his transplant doctor how the stem cells get back into the bone marrow to begin growing new blood cells. The doctor replied, “We don’t know. Nobody understands how these stem cells know that they belong in the marrow and that they are to begin producing cells again, but they do. It’s a miracle and we go with it!”

So, that’s my motto for tomorrow and the days ahead. It’s a miracle in the making and let’s go with it!

Praying for a great new birthday for Mark!

Tuesday, February 8, 2005 10:14 PM CST

Day -2:

Mark sees the end in sight...thanks for all the encouragement and support you are sending his way. He is actually feeling really good. His cough is nearly gone (I wasn't sure I'd ever be able to write that!) and his energy level is up. He's back to walking from the parking ramp to the hospital and sometimes does the four flights of stairs up to our apartment. His hemoglobin remains over 10 and his platelets jumped up to 116 today (normal 150-450) and I think that's really contributing to his feeling energetic. His white blood cell count dropped again today, but it's not bad.

Yesterday's blood culture on his central line came back negative for staph, so that was encouraging. They keep going with the IV antibiotics until they get two negative readings in a row. They did switch him from the ultra-antibiotic to something less aggressive because they want to save the most powerful stuff for the times he may really need it.

Tonight was his last dose of Etoposide and Ara-C, the "E" and "A" drugs in his high-dose "BEAM" chemo. That just leaves "M" (Melphalan?) for tomorrow. He should be on leave from the hospital by noon and not due until late tomorrow night. Then, Thursday is the big day - TRANSPLANT day.

I clarified with the doctor today that the expectation is that by Day 100 all cancer will be gone from his body. It's not unheard of that there may be residual cancer at that point, but the goal is ALL GONE by Day 100. Something to pray for!

We enjoyed lunch with Uncle Duane and Corrine and had a great visit from Gary Nygaard and Bruce Satterlund tonight. They treated us to pizza (it wasn't the plan for them to treat, but they bumped into the pizza delivery guy in the lobby -- no fair!) and chauferred Mark to the hospital while Corrine and I made a quick Super Target run. They stayed and visited with us until 9pm. Like Mark said, "I never would have thought visits would have meant so much (not that I don't like you guys), but it REALLY means a lot to have my friends coming down to see me." So special thanks to Gary and Bruce for visiting tonight. And thanks to Uncle Duane for delivering Corrine this morning. We've had a great day!

Monday, February 7, 2005 10:15 PM CST

Day -3:

Mark is counting the days until he is out of the hospital. It's getting to be very long for him. We watched one of our favorite TV shows tonight (CSI: Miami) and in the middle of it, I heard a big sigh from Mark. When I asked what that was about, he said he was already dreading ordering breakfast in the morning. Eating has become a burden for him. I encouraged him not to think about it again until the morning. The nurses have warned him that not eating is a guaranteed trip back to the hospital, so he knows it's a big deal.

He was telling me today that this six-day chemo process has been a lot harder than his usual 1-3 day chemo process because by Day 3 (or earlier) he gets to start thinking about "getting better." This time he has to face day after day of chemo, knowing he is still on the downhill slide. He'll be so happy on Wednesday when chemo is over and he can start thinking about cleansing his body of the toxins and dead cancer cells!

He's very grateful to have hospital releases; today we went back to the apartment for a few hours in the late afternoon. He was able to eat his favorite grilled-cheese sandwich instead of the hospital food and take a nap in his recliner with Shadow on his lap :).

Midday, he had an arm and shoulder ultrasound because he was experiencing tightness and what looked like swelling in his left arm. He had a blood clot there a year ago and they want to keep a close eye on that. The ultrasound showed no sign of clotting, so the medical team is assuming the tightness is caused by water retention.

His blood counts are hanging in there. His hemoglobin is great (10.8, normal 13.5-18.5). I hollered at him to slow down when he jumped out of bed today; I'm so used to him having to sit on the edge of the bed for a few minutes and then rise very slowly to avoid fainting because of his low hemoglobin. So, the 10.8 hemoglobin has eliminated his dizziness and has helped with fatigue. His platelets are 86 (normal 150-450) and his white blood cell count is dropping, but not bad at 2.0 (normal 3.5-10.5).

Mark insisted that I catch up on sleep today, so I slept in and then had a 2 hour nap this afternoon. I can't believe how tired I am. It's hard not to be with him every minute at the hospital, but I know he's in good hands and I probably prevent him from resting well when I'm there. I'm reading a book called, "Across the Chasm: A Caregiver's Story" by Naomi Zikmund-Fisher which contains her journal as her husband went through a bone marrow transplant. It's amazing how reading her words (which describe my experience too) helps me feel not so alone in this process. On Day -3 of her husband's transplant journey, she wrote, "I hate the feeling that something important could happen at any time and there's no way to know when or what it will be." She was talking about wanting to be at the hospital with her husband all the time too.

My uncle Duane is bringing Corrine down tomorrow and we're all excited about her visit. Mark has a group of friends coming for a visit in the evening too. My parents are bringing Isaac, Allison and Luke down on Wednesday afternoon so that we can celebrate Allison and Luke's 4th birthday! We are looking forward to these wonderful distractions.

Until tomorrow...Jen

Sunday, February 6, 2005 11:17 PM CST

Day -4:

A quick note to let you all know that the 700 miles were traveled safely this weekend -- that's the number of miles it takes for the three sets of caregivers to change places each week (Jen to and from Roseville = 180, Joelyn/Paul to and from Rochester = 180, Loren/Connie to and from Backus = 340).

Mark is doing o.k. Since Thursday, he's had quite a ride. His hemoglobin dropped as low as 6.x (normal 13.5-18.5) even with 5(?) transfusions after his surgery. He had a fainting episode on Friday morning and wasn't allowed out of bed without a nurse's help for the day. Although he didn't react to the BCNU chemo drug in December and January, receiving three times his previous dose did a number on him with headache, nausea and dizziness. That is better now, but other chemo side effects have taken hold including a bad taste in his mouth and just feeling "off." He's gained nine pounds since Thursday, all of it attributed to water weight, so that doesn't feel good either.

A staph infection was detected in his blood on Friday, but the nurses were sure it was a false positive. They re-cultured over the weekend and found that his central line is, in fact, positive for staph. They have filled that line with antibiotics and started him on IV antibiotics through his other line as a precaution. Blood taken from his arm is staph-negative and he has no sign of infection, so the nurses and doctors are not concerned.

Before I left the hospital tonight, we did a celebratory high-five because he'd reached the half-way point of his high-dose chemo. Although I know it feels like an accomplishment to Mark, it's hard for me not to see this as the "point of no return" and it's very, very scary to me. It feels great to be back in Rochester though and be able to benefit from his great attitude and wonderful sense of humor. How I do love him!

Special thanks to everyone who helped me this weekend (Ann Jones, Grandpa Jim and Grandma Esther, Mary Herfurth, Andrea Greene, Sarah Pass, Sarah and Jim McNeal, Gayle Schurz, Janet Van Nevel, Jules and Randy Jackson -- apologies to anyone my tired brain is forgetting!) Also, special thanks to the caregivers who have given Isaac and Corrine special, special care these past three weeks -- Mari and Craig Evans, Beth and Steve Bjork, Jules and Randy Jackson and Peg and Paul Klitzke. Isaac and Corrine are doing amazingly well and I attribute it to this fantastic group of loving caregivers! Thank you from the bottom of our hearts.

More tomorrow....Jen

Thursday, February 3, 2005 1:57 PM CST

Day -7:

Mark is out of surgery and doing o.k. The harvest was successful! They had to take 3 liters of marrow to accomplish it though. So, he had platelet and red blood cell transfusions after surgery.

At the last minute, they decided against general anesthesia because that would require a breathing tube. A breathing tube uses positive pressure and they were worried they might disturb the covering over the hole in his trachea. So, they gave him a spinal. He was awake during the procedure and experienced quite a bit of pain, partially because the spinal didn't cover all areas evenly. His blood pressure dropped signficantly a few times which was very uncomfortable and scary, Mark says, but he is very stable now and ready for a nap.

He can't feel either of his legs yet which is really annoying him. In fact, as they wheeled him into the room, I asked him how he was doing and he said, "I can't feel my legs."

We hope to see his doctor later today and get more details about the harvest. For now, Mark's just really glad it's behind him (pun intended).

Thursday, February 3, 2005 10:39 AM CST

Mark went down to the OR around 10am. They expect his surgery to be from 11am-12pm. He should be back to his room by 2pm or so.

He was in excellent spirits this morning, giving the nurses all kinds of grief. He has a nice hospital room with a beautiful view of the river.

His phone number at the hospital is (507) 287-5356. I have it posted at the bottom of the website.

I'll update the website as soon as I know more.

Wednesday, February 2, 2005 9:12 PM CST

Day – 8:

A busy, but good day. Mark is feeling good and is really ready to start the transplant process. Tomorrow we are due at Rochester Methodist at 6:30am. Sometime by mid-morning, he will undergo a 1 hour procedure to harvest his bone marrow. He will have a breathing tube and special care will be taken to avoid the defect in his trachea. Mark had a pain-free bone marrow biopsy, so he’s not too worried about the procedure, but the nurse today warned that the harvest is like 100 bone marrow biopsies. He’ll be pretty sore for awhile. There is a small chance that they will not be able to harvest enough stem cells from the marrow for a transplant; however, Dr. Johnston reviewed the biopsy report and said his marrow was very “robust” and he expects a good harvest tomorrow.

On Friday, he’ll start his six days of high-dose chemo. This treatment will be inpatient because of the timing of the treatments and the need for IV fluids, but he should be allowed a few hours of “hospital release” between treatments. His sister, Joelyn is coming to be with him for the weekend and she’ll encourage him to get out a bit, at least back to the apartment for awhile.

He should be released from the hospital on Thursday, February 10th after his transplant (Day 0). His blood counts are expected to bottom out between Day 5 and Day 7 and are expected to start rebounding around Day 21. He will be most vulnerable to life-threatening infections during the time between bottoming-out and rebounding. He will be monitored daily during those days and will require many preventative and stabilizing drugs and blood transfusions. The nurse told us today that mouth and throat sores are inevitable and he will most likely need IV nutrition for awhile because he will not be able to swallow. I asked about visitor restrictions during that time and she said there are none. Visitors need to be positively healthy and practice meticulous handwashing, but visitors are encouraged because Mark and I will need lots of encouragement and support during those days. It's so scary to think about those days ahead, but I’m trying to focus on today and tomorrow and get through those first.

On a very positive note, we met Pastor Norman Wahl today. He is the brother of good friends, Bruce and Kathy Wahl (from my Northwestern University days). He is a Rochester pastor and came to offer support and pray with us today. He left by promising that he “would do anything for friends of Bruce and Kathy.” That show of brotherly love and human compassion was amazing. We were also gifted by a visit from Sue Christiansen, Allison and Luke. She brought them down for another visit tonight. We had a great time eating, playing and laughing together. It was a great distraction.

I’ll update the website tomorrow as soon as I can after Mark is out of surgery and we have a report about his bone marrow harvest. Thanks for your prayers.

Tuesday, February 1, 2005 10:12 PM CST

Day –9:

Mark and I had a great day. We decided against a movie or any kind of an adventure because we don’t want to risk Mark catching a cold or getting the flu. So, we slept in and had a wonderful, relaxing day. Mark wrote his first e-mails since arriving in Rochester and I got caught up on e-mails, phone calls and USBank work.

Speaking of work, Mark and I would like to acknowledge the loyalty of Mark’s business partners, Heidi and Tom Miler and Greg Logajon who have taken over Mark’s MN Packing and Crating management and packing responsibilities. Mark was just telling me how grateful he is not to have to worry about how his work is getting done. He also is getting fantastic support from his bosses (Station #2 Chief Kevin Kelly and Chief Rich Gasaway) and co-workers at the Roseville Fire Department.

My bosses at USBank have been equally supportive. Mary Dick, George Shouse and Bill Mengershausen have gone out of their way to support me during this difficult time. I was given a USBank laptop that is configured like my work station so that I can work from anywhere as if I were sitting at my work station. I decreased my hours to 20 hours/week and have been given maximum flexibility and options to get my work done. Co-worker George Deer donated 24 hours of his vacation time to me and that’s allowing me to not use my vacation during our Rochester stay.

It’s an amazing relief to know that people are willing to pick up the slack and go the extra mile to cover for us and “keep our seats warm” while we are fighting Mark’s cancer. THANKS to ALL who are helping us in this way.

Monday, January 31, 2005 9:45 PM CST

Day -10:

Nothing but good news today. Last week, Dr. Johnston thought Mark should see a urologist to be completely thorough with pre-transplant testing. That visit earned him kidney x-rays and a cystoscopy (you don't want to know) today. The procedures turned out to be "not so bad" and the results showed that everything in that department is just fine. Mark wasn't too worried about it, but my imagination got the best of me a few times.

Tomorrow is our first weekday in Rochester with no appointments; will probably be our last too. Mark's cough and shortness of breath is much better, so we might try to see a movie!

Thanks for the great website guestbook entries and great cards, e-mails and phone calls! Mark checks the website, e-mail, voicemail and mailbox often! Aren't we lucky to have so many great forms of communication? Keep it coming!

Sunday, January 30, 2005 10:10 PM CST

Day -11:

Just a quick note about our fun weekend.

Paul and Mark enjoyed visits from Mark's good friend, Brian Knoop and Paul's friends, Jerry and Mary Wille. Mark had no doctor appointments, so they had time for good food and lots of hours for reminiscing and talking fishing and other fun stuff!

I had a VERY busy (but fun) weekend with the kids. I had lots of help from good friends, Shana/John, Andrea and Gayle and was able to get through a haircut, selling Girl Scout cookies, working on Achievement Fair projects, celebrating Quaker's 14th(98th) birthday and thoroughly enjoying Corrine's THREE musical performances.

Mark decided to risk the germs and come to Roseville (chauffeured by Paul) to see Corrine's last performance. He was very glad he came. He got to see Isaac and Corrine's Achievement Fair projects, partake in Quaker's ice cream birthday cake and see Corrine's performance live!

We just got back to Rochester and are switching gears back into medical mode. Mark has three appointments tomorrow, starting at 8am. He's really ready to get on with the harvest, chemo and transplant. He's upbeat, positive, and physically feeling stronger.

Special thanks to Beth and Steve Bjork who did ALL of the transportation for Corrine for her church performance (20 rehearsals?). She thoroughly enjoyed it and it greatly contributed to our goal of staying committed to the kids lives, activities and interests, despite our intense focus on Mark.

Feeling so grateful tonight and ready to turn my attention back to Mark...

Thursday, January 27, 2005 10:51 PM CST

“Embrace Plan B!” Those are the words Jules left me with after giving me a pep talk this afternoon.

Today we learned that Dr. Johnston doubts that Mark’s stem cells will ever mobilize in his peripheral blood, even if he took a break and they tried growth factor shots in a few weeks. He explained that the number of previous chemo cycles and the number of different chemo drugs can impact the body’s ability to push stem cells from the marrow into the blood. Fortunately for us (and unlike other transplant centers), Mayo goes to “Plan B” in cases like this. They have decided to harvest Mark’s stem cells directly from his bone marrow. His white blood cell count has been climbing in response to the growth factor shots, so that gives Dr. Johnston evidence that his marrow is producing stem cells.

They have scheduled his stem cell harvest for Thursday, February 3. It’s an inpatient procedure requiring general anesthesia. They will insert needles into his hip bones and withdrawn about 1 – 2 quarts of bone marrow and blood. They will count the stem cells in their first collections and make as many punctures as needed to collect enough stem cells.

Because his harvest is now going to be an inpatient procedure, Mark will transition right into his high-dose chemo starting on Friday, February 4. That will be considered Day –6 of his transplant. His next five days of chemo will be counted as Day –5, Day –4, Day –3, Day –2, and Day –1 and will all be done at Rochester Methodist Hospital. Then on Thursday, February 10, Mark will receive his stem cell transplant. He’ll go back to the apartment late that night to begin his 3 weeks of recovery.

I had read that stem cells harvested from bone marrow were not as effective as stem cells harvested from peripheral blood. Dr. Johnston confirmed that is the case for SOME cancers, but not for Hodgkin’s thankfully. His stem cells will engraft a day or so later than they would have with peripheral blood stem cells, but other than that, the post-transplant recovery should be similar.

Although it’s hard to adjust to a new plan, I know I’ll get there. The harder part of the visit with Dr. Johnston was our discussion about Mark’s shortness of breath. Dr. Johnston and a colleague spent a lot of time with Mark’s latest x-rays and scans and concluded that the trachea is not the source of the problem. They think it is related to fatigue, radiation, chemotherapy and residual Hodgkin’s. Dr. Johnston reported that Mark’s DLCO (diffusion capacity) test which “measures the efficacy (or lack thereof) of lungs in transferring oxygen from the inhaled air into the bloodstream” was 43 Typically, 60s the criteria used for proceeding to transplant, but because Mark is young, Dr. Johnston decided to proceed with transplant. However, transplant patients on average lose 25f their diffusion capacity. If this happens to Mark, his DLCO could drop to the low 30and require Mark to need continuous oxygen. That was very scary for me to hear about. Dr. Johnston also thinks his risk of death in the first 100 days after transplant is now 3-5 Mark is not worried about these risks, knowing he has no option and that he will overcome whatever obstacles continue to come his way. I know that in time I will put these worries aside too, but today they are big and real.

My brother Adam brought Isaac down tonight. Isaac doesn’t have school tomorrow so is spending the day with Mark and me. We are really enjoying our time with him and looking forward to a fun-filled day with him tomorrow (despite Mark's two appointments).

Paul is coming to take over Mark's care tomorrow. Isaac and I will go back to Roseville. I'm excited to see Corrine's performances this weekend and spend time with all the kids.

Goodnight....Day -14 and counting.

Wednesday, January 26, 2005 11:28 PM CST

A disappointing day -- Mark's stem cell count was down to 1.4. Mark's doctor stopped the growth factor shots for tonight and tomorrow morning. We're meeting with him tomorrow (originally to discuss Mark's shortness of breath); I'm sure the focus will be on what to do to help Mark's stem cells mobilize. We're speculating that they will want Mark to take a "break" (? days) to let his immune system recover from the last chemo and become capable of producing stem cells again.

We distracted ourselves with takeout chinese in front of the T.V. -- 4 continuous hours of "Law and Order" to be exact. Kind of pitiful, but distracting, nonetheless.

My parents are hanging in there with the kids. Corrine is finally better and back to school and rehearsal today. Unfortunately, Luke spiked a temp yesterday and is pretty sick again. It's been a long week for them. Fortunately, we have care for the kids through the day on Friday so that my parents can go home Friday morning instead of Friday evening.

I'll write again tomorrow as soon as we know the next steps.

Thanks, as always, for all of your support.

-Jen

Tuesday, January 25, 2005 10:12 PM CST

Mark and I enjoyed our break from so many appointments today. A crew from the Rochester Fire Dept. stopped by and picked up Mark for a Nelson Cheese Factory Deli run. He got to ride in the truck and came back smiling saying, “It was so great just to smell a fire truck again!” He was too tired to go back and eat with the crew, so he brought a sandwich back for me and was very proud of being the provider of lunch for a change.

His stem cell count was a little higher today at 1.6. Before we got the results, we were speculating what the count might be. I was hoping for 3 and Mark was hoping for 5, so it was a little disappointing to both of us. But, it is higher than the 1.1 it was yesterday. It was his second day of double-doses, so it will be interesting to see what his count is tomorrow. His count needs to be 10 before they can start harvesting. At the clinic tonight, we met a couple getting “double-dose” growth factors today, awaiting mobilization of stem cells, harvest, high-dose chemo and transplant. It was so refreshing to talk to people in the same situation we are in. We hope to see them throughout the process.

Mark called Dr. Johnston today because he is somewhat concerned about his shortness of breath. He gets winded walking from the couch to the kitchen. Reaching for the remote and talking his shoes off are big efforts, if you can believe it. Fortunately, he’s able to laugh about it, but he's getting very tired of it! He had two episodes yesterday where it took a minute or so to catch his breath after coughing. Dr. Johnston ordered a chest x-ray for tomorrow and an appointment with him on Thursday. It’s so hard to imagine Mark going into the high-dose chemo/stem cell transplant in this condition. We’ve talked about this with the doctors and they understand the concern, but feel we need to proceed. We totally trust their opinion.

As much as we love the Mayo system and our nurses and doctors, we get as much or more confidence and strength from the visits, the phone calls, the cards, the e-mails, the notes on the website and your prayers. Your support brings tears to my eyes almost daily. We are so blessed.

Monday, January 24, 2005 9:14 PM CST

Mark and I enjoyed a wonderful visit in our apartment followed by a delicious Red Lobster meal with his parents, Jim and Esther, and Uncle John and Aunt Donalee this morning/early afternoon. It’s so nice to have visitors and be distracted from our usual human contact with nurses and doctors.

It was a disappointing day medically. Mark’s stem cell count is only 1.1 (lower than the 1.4 recorded yesterday). This number needs to be 10 before they can start harvesting his stem cells. This was not totally unexpected because of the long-term effects of his latest chemotherapy. However, Dr. Johnston increased his growth factor dose from 1200 to 1680 and increased the frequency from once a day to twice a day. Despite his platelet transfusion yesterday, his platelet count was 43 today (lower than the 50 threshold that Dr. Johnston set), so we spent the evening at the Infusion Center getting another platelet transfusion and his second set of growth factor shots for the day. It’s tempting to put a photo on the website of the bruise he has on his stomach from all the shots, but decided you all don’t need to see that. I just about passed out when he showed me!

Corrine is still sick with fever, sore throat and cough tonight. She is most disgusted by how bad food tastes. Grandma Connie made crescent rolls especially for her and she cried on the phone to me tonight about how bad they tasted. She is a good little patient though and we’re hoping things turn around for her tomorrow. She’s been rehearsing for weeks for a musical at our church and there are three performances on Saturday/Sunday this weekend. We’re hoping she’ll be better in time to get in a few more rehearsals before the big performances!

Tomorrow should be a relaxing day for Mark and a great opportunity for me to catch up on paperwork and phone calls. Mark has bloodwork and his growth factor shots at 7am and then again at 7pm, but NOTHING in between. Yeah!

Sunday, January 23, 2005 11:11 PM CST

I’m back in Rochester and Joelyn is leaving in the morning and heading straight for her nursing job at The Red Cross in St. Paul. Thanks to Joelyn for her care of Mark this weekend.

Mark had a great weekend. On Friday night, he was (totally!) surprised by Roseville Fire Dept. officers and firefighters Rich, Tim, Doug, Kevin, Hart, Alex, Andy, and AJ. They braved the stormy, snowy weather to drive down to Rochester to take Mark out for dinner. They went to Michael’s, the best in Rochester! Mark enjoyed a great steak meal and tons of fun with his crew and fellow firefighters. It was a great surprise and helped transition him from a week of feeling rotten to a weekend of feeling much better. THANK YOU so much to this group who really made Friday night a special night for Mark and Joelyn!

As expected, Mark’s stem cells did not “mobilize” this weekend. Mobilization happens and signals the time to start harvest when his blood contains 10 million stem cells per microliter of blood. So, the magic number is “10.” Today his number is 1.4, so he has a ways to go. We’ll go back to the Infusion Center at 7am in the morning for another blood test and growth factor shot. His platelets had dropped to 36 today and Dr. Johnston wants them to stay at 50 or above, so he had a transfusion of platelets this afternoon. Tonight he is feeling a lot of bone pain, which is a good thing because it means his marrow has kicked into stem cell production-mode.

Mark’s parents, aunt and uncle (John and Donalee) are coming for lunch tomorrow. We’re really looking forward to that. It’s fun to show our family our home-away-from-home and know they can visualize our surroundings when thinking and praying for us.

I had a tough first weekend of single parenting. Friday night went great, so I was off to a good start. However, by mid-afternoon on Saturday I had two kids (Luke and Corrine) with 101+ fevers. Fortunately, Sam Jones and family hosted Isaac for the day and the Bjorks brought Isaac to the U of M hockey game on Saturday night (Isaac’s first hockey game!). The Jacksons took Allison overnight so that I could focus on Luke and Corrine through the night and morning. Good friend Gayle insisted on coming over to help with dinner and bedtime which was a huge help. Today Isaac spent the day with the McNeals, spending another several hours building forts in the snow. My parents arrived around 5:30pm and I was on my way back to Rochester at 7:45pm. Luke was 100% by this morning (eating three bowls of cereal!), but Corrine was still running a high temp when I left. She really didn’t want me to leave – it was very hard to say good-bye to her.

The Roseville/St. Paul “Schmaedeke Kid/Pet Care Team” is really something to behold. I gathered the volunteers, but they have taken and run with the care and nurture of our kids and dogs. It’s absolutely amazing to us. We are so blessed. From suppers, overnights, breakfasts, transportation, playdates, and phone calls, our kids are receiving the best of care. THANK YOU to all who are participating on the “team” AND to those of you who are praying for this very special group of people.

Thursday, January 20, 2005 11:42 PM CST

Wow! One of our toughest days as far as energy expended. Mark spent 13 hours at the clinic today, completing 12(!) appointments. Fortunately, he had time for a quick nap and lunch at “home” midday.

We started the day with the expectation of getting to sleep in on Friday, but alas, today Dr. Johnston scheduled surgery to put in the central line/Ash Split catheter which will be used to harvest his stem cells, deliver his high-dose chemo and tranfuse his stem cells.

We learned SO MUCH today! Would love to share the details (and will at some point), but I’m exhausted and we need to be at the hospital at 6:45am for his surgery. I will share a few though:

First, we got test results from all of his tests today and results were ALL POSITIVE! His bone marrow is negative for malignancy and his PET scan showed a dramatic decrease in the amount of malignant activity in his lungs and original tumor. Even though he didn’t get through the pulmonary function test, they were able to conclude that he has reasonable lung function. Mark was worried about the results of that one; he was already planning a “training” program to get ready for the retest. He does have to do one more pulmonary test tomorrow which they weren’t able to even start on Tuesday. That’s scheduled for after his surgery, so hopefully that will go o.k. for Mark.

Dr. Johnston is concerned about the defect in his trachea and said it increased the risk of death within 100 days of the transplant from 1o 3-5 Even so, he gave Mark the green light to proceed to tranplant. Day 100 after the transplant is a magic day for many reasons. For one, it is the first time the team will assess “success.”

Mark’s next step now is to get his stem cells to “mobilize.” That means that Mark needs to produce enough stem cells within his bone marrow (which is where stem cells are produced and mature in “normal” bodies) so that they start spilling out of the bone marrow and start circulating in his peripheral blood. To do that, they started giving Mark growth factor injections to stimulate the bone marrow. Then they will take blood each day starting Sunday to determine when enough stem cells are circulating. When that happens they say his stem cells have “mobilized.” Because Mark’s counts are low and still on their way down, he has less than a 50hance of having mobilized stem cells by Monday. But, they’ll test his blood on Sunday just in case he’s ready!

Mark did receive his first blood transfusion today. His hemoglobin has dropped to 8.4 which is close enough to the 8.0 threshold, plus Dr. Johnston was convinced that he had developed enough fatigue and shortness of breath to warrant two units of red blood cells. Mark also learned that he’s dehydrated despite drinking 4 liters of water a day! This is contributing to his dizziness. The nurse did an experiment and took Mark’s blood pressure sitting down and then again standing up. His blood pressure dropped from 120/60 (sitting) to 80/50 (standing). No wonder standing up and moving around is such a chore!

I’m heading back to Roseville tomorrow. I’m very excited to be back with the kids, but a little anxious about single parenting. Friends Gayle Schurz and family and Andrea Greene are planning to help, so it will be fine and fun, I’m sure! Mark’s sister, Joelyn will come down to care for Mark and Rochester friend, Mary Wille is providing care while Joelyn and I travel. This weekend will be the first time since early October that I have not felt responsible for Mark’s care 24/7. It’s kind of scary to turn that over, but I have total confidence in Mary, Joelyn, Mark and Mayo (if need be).

Time for bed!

Wednesday, January 19, 2005 10:56 PM CST

Mark finally had enough and called his new doctor, Dr. Johnston (stem cell transplant hematologist) to tell him about how miserable he’s feeling. Dr. Johnston gave him the choice of going to the ER today or waiting to see him tomorrow. Mark decided to wait until tomorrow, so Dr. Johnston added bloodwork and another chest x-ray to the five appointments already scheduled. So, we’ve got another 7am start tomorrow. The day will end (hopefully!) at 4:30pm with his first injection of stem cell growth hormone and that will be a good thing.

Special thanks to Sue Christiansen who picked up Luke and Allison this afternoon in Roseville and brought them down to Rochester for dinner and some fun tonight. She braved 3+ hours in the car with the twins and 2+ hours here and we are so grateful. It was great to see them mid-week and give them a chance to reconnect with Mark. Special thanks to Jim Christiansen too who covered the home front with soon-to-be-5-year-old twins, Emily and Sarah!

We have over 30 questions written down for Dr. Johnston tomorrow, so it will be an interesting meeting. One of the things that has impressed us to no end at Mayo is each doctor’s ability and willingness to sit, listen, discuss and review questions and information until we are completely satisfied. Unlike my prior medical experiences, I have NEVER seen a Mayo doctor check his/her watch.

More tomorrow...

Tuesday, January 18, 2005 8:54 PM CST

Another tough day for Mark. He didn’t sleep well last night and on the way to his pulmonary function test, he reported, “I’m out of juice.” I thought he was telling me to add orange juice to the grocery list, but when I asked for clarification he explained that he was already completely out of energy.

We wondered how he was going to do a pulmonary function test with his frequent and vigorous coughing. We arrived at 7am and he gave it his best shot, but after he couldn’t catch his breath and the nurse hit the panic button, they decided he couldn’t complete the test. Mark is somewhat worried this may disqualify him from the transplant process, but we’re trying not to worry about that until Thursday when we meet with his doctor.

He required a wheelchair the rest of the morning. He got through his 70-minute “hold completely still” PET scan though and was so happy to get back into bed right after lunch. He took a 5-hour nap and woke up “still exhausted.” It’s so hard to see him this worn out. We know his blood counts are dropping though and most likely causing this level of fatigue.

I was blessed with a 2-hour lunch experience with Doug and Connie Thomsen. Connie and I worked together at Fingerhut from 1994-1998. She is a non-Hodgkin’s lymphoma survivor, but continues to be a Mayo patient as she manages Wagner’s disease, an auto-immune disorder. She and Doug were at Mayo for a regular check-up and were kind enough take me to lunch and offer all kinds of support and encouragement. It was a great day brightener for me!

I’ll close with a SPECIAL thank you to Aunt Ginny, Chief Rich, Niece Rachel, Brother Adam and future sister-in-law Molly and friends Austilene and Ron for our “first Rochester mail.” They all sent funny, inspiring cards to Mark which we received today and put a BIG smile on our faces this morning!

Back to the clinic at 6:45am tomorrow – hoping for a better day for Mark!

Monday, January 17, 2005 10:21 PM CST

We made it through a tough day.

Mark started with bloodwork which showed declining blood counts which is expected due to his early-January chemo treatment. Next he had chest and sinus x-rays. By the time he got to his 11:30am bone marrow biopsy, he was barely able to walk. He was so fatigued and faint and just miserable.

Fortunately, our R.N. recognized how sick he was and got him started on fluids right away. I wasn't sure how he was going to get through the prodedure because of his current condition and the discomfort he encountered during his bone marrow biospy a year ago. The anesthesiologists assured us that this would be better. Thirty minutes later Mark returned asking the nurses if he couldn't just have another hour or two under the effects of the Profofol sedation. Or at least could he take some home! He felt rested and much better. They finished hydrating him with a liter of fluids and finished him off with cookies and juice. He left a new man! We never would have guessed that it would take a bone marrow biopsy to get him feeling better.

We met with an apheresis nurse who gave us an overview of the stem cell harvesting process. He will go 3-5 times; 5 hours each time. She recommended that he have a central line put in because the needle used is thick and rigid and gets to be hard to manage for 5 hours, often 5 days in a row. So, Mark will meet with a surgeon later this week to discuss and schedule that procedure.

Mark finished off the day with an EKG and an echocardiogram which is an ultrasound of his heart. I got to watch the procedure and it was as interesting as the ultrasounds of our babies. Of course, we didn't get results today, but we aren't expecting any surprises. These tests are simply done as a precaution before proceeding with the transplant.

Corrine and Isaac called tonight from the Evans' household. They are staying there this week and tonight is their first night away from home. They were excited about being there, but not too excited about getting back to school tomorrow. It was a fun holiday weekend for them.

Mark and I will be back at the clinic at 7am tomorrow, so I better get Mark to bed. He's a night owl and heading to bed this early is a struggle.

Will write again tomorrow. Thanks for all the continued support and encouragement.

-Jen

Sunday, January 16, 2005 5:44 PM CST

We had a great (busy!) weekend with the kids here. Thanks to my parents, Paul and the Wille family for getting us moved in and settled!

It was so good to have the kids here. They can now visualize where we are living and look forward to coming to visit. This morning we (G. Loren, Corrine, Allison, Luke and I) braved the 0-degree weather to walk two blocks and catch the Rochester skyway. From there we navigated by elevator, escalator, and stairways through skyway and subway to the Mayo Clinic and Rochester Methodist buildings. It was a fun "adventure" and gave the kids a quick look at the buildings we spend so much time in.

Most of the downtown shops were closed, but Corrine found one that was open and sold Beanie Babies. She spent the last of her money on an adorable Rochester bunny. Mission accomplished!

Mark has been plagued by his cough this weekend but has found that by clenching his teeth, he can often suppress it. He had another visit from a Rochester Fire Dept. crew today which he really enjoyed. We are feeling so welcomed here.

We have a busy week ahead with 17 appointments scheduled. Tomorrow we start with 6 of them going from 8:30 - 5:00. Hoping Mark won't get overtired. He continues to struggle with appetite, so getting him to eat tomorrow will be a challenge.

The kids and G. Loren and G. Connie are on their way home, so we'll have a long relaxing evening here. We miss them already, but are enjoying our special time together too.

-Jen

Friday, January 14, 2005 3:22 PM CST

Excellent news on all fronts today!

First, Mark is feeling better today! His white blood cell count is great because of the boost from his Neulasta shot (so no more neutropenic diet excluding fresh fruits and vegetables!) His hemoglobin and platelets are low, but not dangerously. He's getting an Aranesp shot later today to help with red blood cell production.

We got fantastic reports from both doctors. The CT scan showed that the cancer has shrunk some more and that the tissue around the trachial defect has moved closer to the hole rather than pulling away. By moving closer, the scar tissue has decreased the amount of open space around the trachea and decreased the chance of the airway collapsing or air escaping outside the lungs. I'm probably not describing it very well, but the bottom line is that both doctors were pleased with the CT results today.

Mark will be embarrassed that I am sharing this but I found it so significant. Dr. Utz complimented Mark on his "remarkable attitude." He wondered aloud if it was an attitude he used just for doctors or if it was the real thing. I confirmed that his "remarkable attitude" is the real thing (I am so proud of him, can you tell?). Dr. Utz commended him for being so strong and positive and assured him that he was sure it was contributing to his ability to stay "healthy" through this rough treatment.

We said a temporary good-bye to Dr. Zent today. He is transferring Mark's care to the Transplant Team, so starting Monday, Mark's doctor will be Dr. Johnston. It's scary to be starting work on a new doctor relationship after all we've been through with Dr. Zent, but he said he would ALWAYS be available to us if we needed him during the transition and stem cell transplant. We love his South African expressions and the one he sent us off with today will stick with me. He smiled, shook Mark's hand and say, "GO WELL."

On the social front, we've made new friends already. Mary and her daughter, Megan Wille, friends of Mark's brother Paul visited when we arrived last night. They came loaded down with bags of "apartment essentials" and stayed to visit and give us a great welcome. They will come again tomorrow morning to help Paul and my dad unload the treadmill and recliner. We had such a great time visiting with them.

This afternoon, after our last doctor appointment, Rochester Assistant Fire Chief Chuck Herman and firefighter Jeff Drew stopped by to welcome us to Rochester and to offer their support. Aren't firefighters the best? They stayed and talked "fire shop" with us which of course, Mark loved! They recommended the best ice cream in Rochester at Nelson Cheese just a block from our apartment. That's good news too!

Well, we're both feeling great this afternoon. It's feels like success is starting to come our way. The kids are coming down tomorrow for a two-day visit and they are very excited about that. We, of course, miss them already and are anxious for their arrival.

God Bless!

Tuesday, January 11, 2005 11:45 PM CST

Our Rochester address and phone number are finalized. They are at the bottom of this page. I know Mark would enjoy getting notes of encouragement and/or humor!

Mark is still suffering from the side effects of chemo and his prednisone "hangover" caused by dropping from 100mg to 0 mg in one day. He's eating little and resting all the time. His greatest efforts are eating and sitting on the cough trying to occupy the kids with Legos or books. The effort it takes is obvious and so hard to watch. Last night when I asked him how he was doing he said his neck was sore from holding up his heavy head. He added, "I know I have a huge head, but I don't ever remember it being this heavy!" He talked to Dr. Zent on Monday, knowing there was probably nothing that could be done to ease his discomfort. Dr. Zent sympathized and encouraged him by telling him, "You're doing your time. It will pass. Hang in there."

Getting ready for our move to Rochester and getting my last "in the office" hours in are keeping me distracted. I'm looking forward to being able to focus my attention on Mark and give him the perks he so much deserves now (DQ blizzards whenever he wants them, quiet mealtimes, backrubs and time to talk).

I've already been blessed with a friend in Rochester. Paul's good friend, Mary Wille, has been in contact with me for weeks and is offering daily and complete support for ME :)! She and her daughter, Megan have already made a Target run for us and have offered to help us get settled later this week. Even though we've never met, I already feel blessed by her and her family's presence in our lives!

Thanks to those of you who are coaxing me through these very scary days. I appreciate the energy and courage you are providing.

-Jen

Sunday, January 9, 2005 9:14 PM CST

Well, we made it through another very difficult weekend. Thanks to the Klitzkes, Bjorks, Barts, and Jones' for getting Isaac and Corrine out of the house this weekend!

Luke is better and Mark avoided whatever it was that Luke had, so we are very grateful for that! However, Mark is as miserable as he's been before. No fever (again, we're thankful), but his cough is terrible; he fainted again last night after a coughing spell. He also is exhausted and spent the entire weekend in bed or on the couch. Thanks to the Vikings for providing some fun entertainment for him this afternoon!

He also has little appetite, although his food restrictions are gone, so we're back to eating cheese. We treated Mark to a DQ Blizzard this afternoon which "went down pretty well." Yesterday, he requested chips and sour cream, but so far has not had the appetite even to break those out. Those who know Mark know he must be feeling rotten to not have interest in chips and sour cream!

I'm starting to feel a lot of anxiety about our transition to Rochester at the end of the week. Mark is not anxious about it though. He has requested that we start planning some fun things for post-transplant, so when we get settled, we'll start planning a vacation. My dad has already started working on planning some fishing expeditions for May and June.

No bloodwork until Friday, so we'll trust our observations of his health for signs that he needs medical care before then. So far, so good though. Keep your prayers going!

Jen

Wednesday, January 5, 2005 11:32 PM CST

Mostly good news on the blood front. Mark's platelets are 217 (130-430 normal) which is great! His hemoglobin is 9.2 (13.5-18.0 normal), but it was 9.0 last week, so it's hanging in there and a blood transfusion wasn't necessary!

His white blood cell count is 0.7 (3.5-10.8 normal), so he has virtually no defense against "bugs." On Saturday, I'll give him his Neulasta shot which will kick into gear the production of white blood cells.

This is NOT the time to have a sick kid, but as luck would have it, Luke spiked a high temp this afternoon and it's still going strong. It was 104.4 at bedtime and he woke up just a few minutes ago and it's 103.9. I'll take him in for a strep test first thing tomorrow. He's not complaining of throat pain, but you never know!

It's hard to imagine Mark escaping without catching something, but we'll continue to pray for his health. He's still not feeling well, but he has a good attitude. Tonight at supper though he said, "I just can't wait until I feel good again." My heart goes out to him!

I'll keep you all posted. THANKS for keeping us in your prayers. -Jen

Tuesday, January 4, 2005 8:36 PM CST

Mark hasn't been feeling well for several days, but he continues to experiment with his daily schedule of treadmill walks, eating and sleeping to attempt to do what he can to feel better. He continues to AMAZE me because he never complains! Tonight I found him on all fours in the hallway. He explained that sometimes he needs to get down on his hands and knees while he coughs so that he doesn't blackout! Now -- wouldn't you complain about that just a little bit?!?!

Tomorrow morning Mark's dad is taking him for his weekly bloodwork. We're anticipating that his counts will be very low and he may need his first blood transfusion. We're both actually very thankful that he's made it this far without one.

Mark has a CT scheduled for Friday, January 14 and will meet with his pulmonary specialist again that day too. Then on Monday, January 17, he starts the testing for his stem cell transplant. So, we're moving a majority of our stuff to our Rochester apartment on Thursday, January 13th. My parents and Mark's brother Paul will help move the rest of our stuff (including treadmill!) on Saturday, January 15. As soon as I know our address there, I will post it on the website. I know Mark would enjoy getting notes there. As housebound as he is here, I worry that he may really feel isolated in Rochester.

Mark has done quite a bit of reading about autologous stem cell transplants and I'm just getting started. It's going to be a LONG process. Best case scenarios say he can return to work after six months, but one year is not uncommon. Hard to imagine another year of not feeling well enough to work! But, we're trying hard to focus on TODAY and everything we have to be thankful for today and there is a LOT of that. Including the support that continues to pour in. Thanks be to God!

Thursday, December 30, 2004 4:21 PM CST

Mark is feeling much better today, probably due to the 100mg of Prednisone he started yesterday. He was scheduled to get 140mg, but we talked to Dr. Zent about how hard he got hit last time when he stopped taking that dose abruptly. We asked why he couldn't be weaned slowly. Dr. Zent explained that the risk of infection is much higher when Mark is on prednisone because it kills the lymphocytes in the blood, so he doesn't want Mark on it any longer than he has to be. So, he decided to drop the dose to 100mg to lessen the effects of going off cold-turkey.

Although Mark's hemoglobin and white blood cell counts are still very low, Dr. Zent decided to proceed with another round of chemo. He thinks the benefits of getting another round of salvage chemo in before Mark has his high-dose/stem cell transplant outweigh the risk of infection he'll have the new few weeks. He'll most likely need a blood transfusion next week to get him through. Mark has never gone into chemo feeling this run down and with his blood counts so low, so it's kind of scary, but we're up for the challenge.

His sense of taste is gone and he has no appetite, although the Prednisone should help with that. Dr. Zent encouraged LOTS of HIGH-CAL snacking because he is starting to lose weight again. About the only thing that appeals right now is ice cream, so we're going with that.

His cough still continues to be a big source of discomfort although he's working hard everyday to develop ways to suppress and manage it. We bought a treadmill last week and Dr. Zent has challenged him to walk 2 or 3 times a day for 20 minutes. He's up for that challenge too.

Mark is scheduled to have a CT scan early Friday, Jan. 14, so we're planning on starting our stay in our apartment on Thursday, Jan. 13. The kids will get their first look at Rochester when my parents bring them down for that first weekend. They are very excited about finally seeing the mystery place we keep escaping to.

Please pray for Mark and his health in the coming weeks. We're heading into the hardest part of this journey so far and we're going to need all the courage and strength we can get.

Thanks -- Jen

Monday, December 27, 2004 4:39 PM CST

Hope everyone had a nice holiday. We got through it without anyone else getting a stomach bug -- very thankful for that!

Mark did his best to enjoy the weekend, despite feeling miserable. He rose to the occasion and "participated" in all the Christmas celebrations, except for Christmas Eve worship because he had a low-grade fever.

He had bloodwork done today and although his hemoglobin and white blood cell count actually deteriorated since last week, his platelet count is much improved (95 up from 25; 130-450 normal) and that's enough to warrant proceeding with his next round of chemo this week.

Isaac and Corrine are up north with my parents and Mari Evans has generously offered to have Luke and Allison overnight and all day Wednesday while Mark and I are in Rochester. We'll drive down Tuesday night. Mark has appointments at 8:10am, 10:30am and 3 hours of chemo starting at 2:30pm.

The chemo consists of 3 IV drugs and 2 outpatient drugs that he takes for 10 days. He'll start his cheese restriction on Wednesday and it will last for 10 days.

Although he really wants to get on with his next round of chemo, I think he's worried about how he'll get through it since he's feeling so awful right now. His cough is really bothering him, causing him near-blackouts, pain and chest cramps. He might need a phone call or two later this week and this weekend to lift his spirits.

Thanks to all who continue to support and care for us!

Wednesday, December 22, 2004 9:56 PM CST

Sorry for the delay in updates. There hasn't been much new. Mark has been feeling tired and his cough continues to annoy him, but he was just saying how much better he feels compared to when he was enduring the DHAP chemo. We were remembering how he would struggle to get from bed to bathroom to dinner table to couch and back to bed. Now, at least, he can run an errand or two a day and has energy to read or do Legos with the kids.

We traveled to Mayo today for bloodwork and his second round of BCVPP chemo. We were surprised (as it seems we usually are) to learn that his blood counts were very low -- too low to start chemo today. His hemoglobin is 9.1 (13.5-18.5 normal) so he qualified for an Aranesp shot which will stimulate red blood cell production. His platelets are 25 (130-450 normal), so we need to be watchful for bleeding and shortness of breath. He may need a blood transfusion if starts bleeding or his platelets drop and his white blood cell count is 2.4 (3.5-11.0 normal).

As insensitve as I can sometimes be, I blurted out "Oh good, cheese for Christmas!" One of his chemo drugs, procarbazine has dietary restrictions including no cheese or processed meats like sausage or pepperoni. So, we've been gorging on cheese the past few days expecting a ban on cheese to take effect today. It wasn't until later on the car ride home that Mark told me how disappointed he was to be "off schedule." Staying on schedule with chemo is important because it is most effective at regular intervals. Because this chemo treatment has shown tumor reduction, Mark REALLY wanted to get started again.

He'll have blood drawn at MN Oncology in St. Paul on Monday and if his counts are "better" we'll go to Mayo next Wednesday, Dec. 29 to try again. We had a good laugh at my expense when I asked Dr. Zent, "What criteria exactly will you use to determine "better?" If looks could kill! Dr. Zent and Mark knew what I was thinking...if you just tell me your criteria, I'll be able to analyze the blood test results on Monday morning and make the "whether to get chemo or not" call myself! Dr. Zent gave me "the look" and assured me that he would look at all the numbers and explain his rationale for the decision when he made it after HE got the blood results on Monday.

We're also trying to manage a case of stomach flu (?) or something going on with Corrine. I was up with her in the wee hours of the morning and couldn't get back to sleep as I played out what surely will be a series of all of us getting sick this week. I reminded Isaac, Luke and Allison to wash their hands all day today OR we'll be opening presents on Christmas Day in the bathroom. They thought that was very funny!

We were blessed with a free consultation from Mary Sheedy Kurcinka yesterday. She is a local nationally sought-after speaker and author of parenting books (Raising Your Spirited Child). Mark and I took a class from her this spring and contacted her last week because we are really struggling with unmanagable behavior from all four kids. As we described our situation, she had no doubt that this behavior was evidence of extreme stress and "shut down" mode for the kids. She gave us some great ideas for absorbing that stress for them and helping them decompress and for adding back some of the bedtime structure we have let go due to exhaustion and stress. My parents were able to be part of the meeting and it was SO helpful to talk about these short-term needs and also review the plan for when Mark and I go to Rochester in 3 short weeks!

Hope all of you have a blessed and fulfilling holiday weekend. I'll have more news on Monday.

=Jen

Tuesday, December 14, 2004 10:34 PM CST

Mark and I enjoyed a lovely drive to Rochester today (ha!). Mark has been running a low-grade temp since Saturday (with the exception of 101.3 last night) and developed sharp chest pain yesterday. Although his temp was normal this morning and the pain was better, Dr. Zent wanted to rule out pneumonia, so we went to Mayo for a chest x-ray today.

Mark started with bloodwork which showed a good white cell count; so Mark is not neutropenic (risky low white cell count) and therefore, we did not need to be overly cautious in regards to his fevers.

The x-ray showed no signs of pneumonia or other infecction and his throat and ears looked good. Dr. Zent concluded that the chest pain was due to a muscle or rib injury due to his strenuous coughing. He was very glad we made the trip and were able to rule out any serious complications.

Since Mark has been coughing for weeks now, we asked Dr. Zent when we might expect his cough to go away. He explained that the cough is most likely due to the hole in Mark's trachea. He is coughing because normal lung secretions can't get up the trachea and down the esophagus like they normally could.

All in all a good day! Special thanks to Jim and Esther, Jules and Randy Jackson, Wendell, Kathy, Andy and Sarah Pass and Uncle Paul for covering the kids today! Paul got the added bonus of a rear car crash in the process! Thankfully he's doing fine!

Thursday, December 9, 2004 11:14 PM CST

I am delighted to report that we have good news! This is the first good medical report we've had since starting at Mayo and the first purely good report since January! It has been such a LOOOOOOOOONG time coming!

Mark had bloodwork and a CT scan today at Mayo. We met with his pulmonary specialist, Dr. Utz first. He was so happy to report that the CT scan showed no further deterioration of the trachea. He was also thrilled that none of the possible complications that could have happened (infection, worsening cough, collapsed lung or trachea) did happen. He's content to continue to leave the trachea alone and hope for Mark's body to come up with a creative solution. One of the highlights of the day was watching Mark's broncoscopy video. It was amazing! It started with the typical scope view of the throat (seen often on CSI: Miami) and then a huge gapping hole appears with only the skeleton of the trachea remaining. It looks like we were suddenly in the rib cage of a dinosaur with open ribs appearing above us. Mark described it like it "looks like a bomb went off." Once again we were so happy to be at Mayo where the technology and doctor resources are available to allow us to understand so many of the details.

We got more good news when meeting with Dr. Zent, Mark's hematologist. He showed us a side-by-side comparison of the November 22nd and December 9th CT scans. We were able to see the obvious reduction in the size and number of cancerous nodals in Mark's lungs. His main tumor has responded as well. Although Dr. Zent couldn't quantify the response, it was enough to convince him that the high dose chemo/stem cell transplant is worth the effort.

As you can imagine, Mark and I are like new people tonight. Although we've been hanging on tightly to as much hope as we can, we feel like we've been pushed right up on top of the hope mountain tonight. It feels great!

Dr. Zent got us in touch with Dr. Thompson while we were in his office today. She is the hematologist that insisted that Mark attend the RFD Benefit. Mark got a chance to personally thank her for that great "medical" advice. That night and hearing the stories about the night and what people have done to contribute their resources has carried Mark and me through many of our darkest moments in the last weeks.

Mark returns to Mayo on Wednesday, December 22 for a 3-hour outpatient chemo treatment. He will continue on oral chemo through January 1. He'll go back for a follow-up CT scan around January 8 and then start the stem cell transplant process on Monday, January 17.

Tuesday, December 7, 2004 12:26 AM CST

Mark is doing pretty well today.

He finished his chemo on Friday and was really ready to start feeling better; however, he was miserable this weekend. He was tired as expected, but he also felt mentally "foggy" and had body aches. We think part of it might have been his abrupt drop from 140mg of prednisone a day to none! We questioned his doctor about this because people usually come off prednisone so gradually, but his doctor said the long term effects of taking it were not worth weaning slowly.

He felt good enough to run a few errands yesterday and he's home alone with Corrine this morning, so overall he's doing much, much better than in weeks past.

We'll spend Thursday at Mayo. Mark will have another CT scan and we'll meet with both his pulmonary specialist and his hematologist.

Thursday, December 2, 2004 2:17 PM CST

Mark continues to "walk on air" after the great Benefit party on Saturday. He's still telling me details about conversations and interesting stories about bidding going on. In fact, we'd like to create a collection of bidding stories. So, if you have one to share, please send me an e-mail (jschmaedke@aol.com) with the story. Also, indicate whether it's o.k. to share your story on the website.

Mark is feeling pretty well. Today is Day 9 of his latest chemo treatment. He takes his last drugs tomorrow. He had bloodwork done today and his blood counts are pretty good (much, much better than they were when taking DHAP). His white blood count is 4.0 (3.5-11.0 normal). His hemoglobin is 9.1 (13.5-18.5 normal - blood transfusion done at 8.5). His platelets are 140 (130-450 normal).

Mark is getting good at negotiating the healthcare system too. He is in need of a Neulasta shot (to boost white blood cell production) on Day 11 (Saturday). So, our choices were to delay the shot until he could get it in St. Paul on Monday or drive to Mayo to get it on Saturday. He came up with the solution to get a prescription to pick up on Friday, so that I could give the shot on Saturday. Not only did he come up with the idea, but he made all the phone calls and arrangements for it too. That was such a relief. I can't express how absolutely sick I am of making medical phone calls.

One last tidbit (literally)...Mark would be disappointed if I didn't share this story. As I've probably stated before, Mark has been coughing alot for weeks now. It varies between a "normal" cough and an almost unbearable violent hacking cough. He insists that during those coughing fits there is "something" that needs to come up. As we were watching a movie as a family the other night, he had one of those fits. At the end, he abruptly got up and went to the bathroom. When he didn't return after several minutes, I went to check on him. He was closely examining a small piece of gray tissue. He continued to study it before carefully saving it in a jar for Dr. Zent. The next day, he called Dr. Zent, who speculates it is a piece of his trachea. Dr. Zent reported that the broncoscopy had shown a flap of trachea barely hanging on. So, Mark finally got it up. Sorry to probably disgust you, but Mark thinks this is a great story -- worthy of being told over and over.

Sunday, November 28, 2004 2:32 PM CST

Greetings the day after the wonderful Mark Schmaedeke Benefit!

Thanks to ALL of you who organized, donated items and worked hard to plan and carry out an amazing party and tribute to Mark! It was truly unbelievable.

Although tentative about coming, Mark did attend at the insistence of one his doctors, Dr. Thompson. And he is SO happy that he did. Never in his wildest dreams did he imagine such an event. He was able to stay for 2 hours and enjoyed visiting with each and every person that greeted him.

I got home at 10:45pm and expected him to be in bed, but he was so lively and wanted to talk about the evening. We stayed up until well after midnight talking about the night -- the people who were there and the stories that accompanied them. This afternoon he started looking at the guestbook and was disappointed to have missed seeing so many of you. Mark was so honored and truly touched by the experience. "It's an experience I will never forget!"

It is Day 5 of his new chemo regiment and he's feeling "a little off", but is feeling much better than he was a few weeks ago. We don't expect to go back to Mayo until Thursday, December 8, and it feels good to know we can settle into a little routine again.

We can't thank you enough for all everyone is doing to make this journey a positive, amazing one!

Thursday, November 25, 2004 9:27 PM CST

We got home from Rochester at 3pm and spent the rest of the day with our families in Moundsview. We enjoyed a fantastic meal and lots of fun telling stories and joking around. It was a good day. Mark and I were pampered thoroughly (no cleaning, cooking or clean-up duties!).

Mark is feeling good (just tired) and is optimistic that his trachea will mend itself and his new chemo drugs will work away on the Hodgkin's in his lungs.

We are so thankful for the outpouring of love and support from our family, our friends and the Roseville, Twin Cities, and Rochester Mayo communities and from people spread across the United States. We are so blessed.

Hoping everyone had a good Thanksgiving Day!

Wednesday, November 24, 2004 6:59 PM CST

We spoke with the pulmonary specialist this morning. After reviewing the video of Mark's broncoscopy with several doctors, they are concluding that the radiation damaged the trachea and then the tumor which was attached to the trachea, disintegrated and took the wall of the trachea with it. He confirmed that a surgical trachea repair is not worth the risk now. He reviewed the stint option and explained that while it is technically possible, there is no medical reason to proceed. For now, his trachea is open ("not pretty, but open") and because his health is not compromised, the benefit of stabilizing the trachea is not worth the potential risks associated with a stint (infection and clogging). So, for now, they will closely monitor the hole with CT scans and broncoscopies (oh joy!). They do have hope that scar tissue will form around the hole and potentially provide a "natural" solution!

As far as the cancer report goes, the biopsy and PET scan results are back. There was no evidence of infection near the trachea hole or in the lung nodals. The biopsies did not contain enough tissue to confirm that the lung nodals were Hodgkin's. The PET scan showed "lots" of activity, but they can't say that activity is definitively malignant. Dr. Zent gathered several hematologists and together they decided that more extensive biopsies would not add enough information to make them worth the risks. So, they are proceeding with the assumption that the Hodgkin's has progressed.

Even though they are concluding that the tumor around the trachea did respond to chemo, they are forced to change the chemo drug because the lung nodals obviously didn't respond to the DHAP therapy. Therefore, they are starting his new chemo regiment tonight. It is a 5-drug treatment called BCVPP with 3 of the 5 drugs given via IV over a 2-3 hour time and the other two taken orally everyday for the next 9 days. It is a less-toxic regiment than the DHAP, so we're hoping the next few weeks go better for Mark. Dr. Zent expects to give 2 cycles of this treatment with 4 weeks between before proceeding to high dose chemo/stem cell transplant in mid-January.

We're planning on returning to Mayo in two weeks to meet with Dr. Zent. Mark will have a CT scan and meet with his pulmonary specialists again.

On a final note, they are releasing him from the hospital tomorrow! This was a huge surprise. Our families were working hard on arranging a Thanksgiving celebration in Rochester, but now we're back on for a celebration in Moundsview on Thanksgiving.

Tuesday, November 23, 2004 9:39 PM CST

Mark's broncoscopy went well today. We were transported to St. Mary's via ambulance which added a little excitement to the day. In fun, Mark requested both a helicopter transport or at least to blow the horn in the ambulance, but neither request was granted. During the procedure, they were able to visually inspect the area and get biopsies of the area around the damaged trachea and the new lung nodals. We'll learn biopsy results tomorrow.

One of Mark's hematologists relayed an unofficial report from the thurasic (sp?) surgeon that he is advicing that the trachea be left alone for now. The other two options have been ruled out now because the stint option is temporary and the surgery option is too risky. Repairing a trachea is a "very complicated" surgery and has a mortality rate of 40-50% for patients who have had chemo and radiation.

Therefore, we're left with a "very serious situation" (as the hematologist described). Although, she says there are "many" of the best physicians at Mayo working on this problem and brainstorming solutions.

Amazingly, Mark remains optimistic and I'm holding my own. Mark will be in the hospital until at least early next week. Depending on how tomorrow goes, the doctors may release him for a few hours on Thursday to join an impromptu Thanksgiving celebration with our families at the apartment I'm renting in Rochester this week.

Thanks for your support and prayers. They are pulling us through.

Monday, November 22, 2004 8:39 PM CST

Mark had his CT scan and we met with Dr. Zent today, to see how the tumor has responded to the chemotherapy. We didn't get quite the news we were hoping for. The tumor appears to be the same size it was in October. I say "appears" because the report was not exactly cut-and-dried. The CT scan also showed areas on the lungs which could be either an infection or more Hodgkins.

In addition, the CT scan showed that part of Mark's trachea has a hole in it. There are four possible reasons for this: first, that the tumor has in fact responded to the chemo and was previously occupying the area that now has the hole; second, that the tumor is invading the trachea; third, that there is an infection causing the hole; or fourth, that Mark's trachea was damaged by radiation. (The first scenario would mean that the tumor has actually shrunk somewhat).

Chemo has been delayed until the cause of the trachea hole has been determined. So, Mark is at Rochester Methodist tonight and will have a bronchoscopy tomorrow or Wednesday. That procedure involves a scope down his throat and allows the doctors to get a good look at the trachea and biopsy tissue. He will be heavily sedated but not under general anesthesia for the procedure. Depending upon what the doctors see, he may get to go home after that or else we will need to deal with trachea repair.

We also learned that Mark definitely will undergo another round of "salvage chemo" before the high-dose chemo/stem cell transplant. It either will be another dose of the DHAP chemo he has been receiving or it could be a new chemo combination called BCCVP. The kind of chemo and timeline will be determined after we solve the trachea complication.

The other piece of news we got today was that the stem cell transplant is now scheduled for mid-January. (We had been told either mid-December or early January.) Hopefully that will mean that Mark can be home for Christmas!

Thanks to Jules for spending this stressful day with us. It was so helpful to have another pair of ears available and of course, her wonderful sense of humor keep things on the light side. She also authored this update for me.

Friday, November 19, 2004 4:52 PM CST

Mark thinks he is feeling better, although it's hard to tell because he's so exhausted. He had blood drawn today and his counts are great -- white blood cells 9.2 (4.5-11.0 normal), hemoglobin 11.2 (13.5-17.5 normal), and platelets 240 (140-440 normal). He was almost disappointed to see his hemoglobin so high because he feels so tired he thought he still must be very anemic. With such good blood counts, it's hard for him to understand why he still feels so lousy.

He had an "ear-check" at the ENT today. It appears that the ear infection is gone, but the fluid is still there causing hearing loss and discomfort and that fluid could stick around for 3 weeks or 3 months. That wasn't exactly encouraging news!

He has been out of the house a few times in the past two days. He walked with Paster Hans yesterday and then went to drill for the fire department last night. He was so glad to get out and do something normal.

The plan is still to go to Mayo on Monday. He'll be having a CT scan in the morning and a dr. appt. in the afternoon. Depending on the results of the CT scan and whether Dr.Zent thinks he is well enough for more chemo, he'll either be admitted to Methodist for another three days of chemo or chemo will be delayed or this "salvage" chemo will be over and the next step with be his high-dose chemo/stem-cell transplant.

Tuesday, November 16, 2004 10:04 PM CST

Mark thinks he turned a corner today! After being so excited to be home from the hospital yesterday afternoon, he was so frustrated to be feeling absolutely miserable all last night. He thinks it was the worst evening/night he had had in days!

He slept most of the day today and didn't eat much for dinner, but is feeling better tonight. His cough has subsided somewhat giving him much-needed relief from the endless violent coughing.

I called Dr. Zent at Mayo today to see if a blood transfusion (although not urgent right now) might be the boost his body needs to get him through this. Dr. Zent explained that it would help with his fatigue, but not with overcoming his sinus/ear/bronchial infections.

So, we're praying for healing this week in preparation for next week's chemo. Dr. Zent did say that chemo may have to be delayed a few days if he needs more time to recover. But we're seeing positive signs tonight, so hopefully it will be smooth sailing the rest of the week.

Monday, November 15, 2004 7:20 PM CST

Mark is finally home from the hospital. His oncologist didn't come by until 3pm today so it was a very long wait to get released. Even though Mark's temp was back up over 100 degrees last night, we were both ready to argue aggressively for his release. Thankfully, we didn't have to.

His white blood cell count was great today at 7.0 (4.5-11.0 normal) and his platelets were up to 58 (140-440 normal). Thanks to his Procrit injection yesterday, his hemoglobin count has reversed its trend and is now on the upswing -- up to 8.7 (13.5-17.5), so Mark avoided a blood transfusion again. Yeah!

Mark is very excited to be home. He ate dinner with the family but was exhausted by 7pm and is relaxing in bed. He's looking forward to feeling better everyday this week. I don't know how he does it, but he manages to focus on today and not think about heading back to Mayo next week for another big hit of chemo. He's amazing!

Thanks for your continued support.

Sunday, November 14, 2004 11:13 AM CST

Day Four at United Hospital and Mark is REALLY ready to go home. He's feeling better today, but his temp was up again last night so he has to stay another day. If his temp stays normal through the night, he can go home tomorrow.

He is still dealing with lots of head congestion, ear pain and hearing loss, so he had an ENT (ears, nose, throat) consult this morning. The dr. said it will just take time to clear up the ear infection. He did have one new medication to try, so hopefully that will help. Mark has been amazed by the discomfort associated with this ear infection. He knows now why kids get so crabby when they have ear infections.

His white blood cell count reached the "normal" range today at 4.7. So, he doesn't have to wear the mask when he walks the unit and he doesn't have to worry about bacteria in his food. His platelets are up to 30 (normal 140-440) so that's getting better.

Unfortunately, his hemoglobin is 8.5 (13.5-17.5 normal). They usually give blood transfusions at 8.5, but the oncologist decided to hold off and see if his body could rebuild on its own. I've been asking for 3 days about giving him Aranesp which stimulates red blood cell growth and I've gotten the run-around ("hospital doesn't like to give it because they don't get reimbursed"). The oncologist today offered to give him Procrit which is similar. Why he didn't get that 3 days ago is SO SO frustrating to me!!! I'm still trying to figure out how to get the best care for Mark. It's amazing how much he would miss out on if we weren't "fighting" for it.

For those of you wondering about Grandpa Loren, Grandma Connie and the kids -- they are holding their own, but by a thread. Hopefully, we can get Grandpa and Grandma on their way early this week, so they can rest up for when Mark and I leave for Mayo early next Monday morning.

Saturday, November 13, 2004 11:12 AM CST

Mark is feeing much better today! Yeah! His temp spiked again last night, but has been normal all morning (without Tylenol). He felt hungry for the first time in many days and ate a great breakfast.

His white blood cells took another jump today, up to 3.4 (4.5-11 normal). His platelets are 17 (140-440 normal) and his hemoglobin is 8.6 (13.5-17.5). Because of the increase in his white blood cells, the doctor is taking him off IV antibiotics and putting him on Augmentin. (Same as Luke, diagnosed with tonsilitis on Thursday!).

Mark's sister, Joelyn spent the night in the hospital last night. I got a much-needed break and was able to help celebrate Dad's and Molly's birthdays with the kids, Grandma Connie and Adam.

Everyone is hoping Mark will be well enough to be released tomorrow. I'm seeing lots of good signs -- like renewed interest in reading the newspaper and e-mails.

Friday, November 12, 2004 12:22 AM CST

Another day at United Hospital. The Infectious Disease doctor and Oncologist have been by to see Mark. They are sure the antibiotics will be able to overcome his infections "soon." His temp spiked again last night, but has been in the 99-100 range (without Tylenol) since midnight. He does have bronchitis, but not pneumonia.

His white blood cell count is rebounding, so that is encouraging. It is 1.4 (4.5-11 normal) up from 0.6 yesterday and 0.2 on Wednesday. His platelets are still very low at 13 (140-440 normal). His red blood cell count is finally showing the effects from chemo. They've actually reached their lowest point, 9.0 (13.5-17.5 normal) since he started treatment a year ago. He'll need a blood transfusion if it falls to 8.5.

He's pretty discouraged today, although he never complains. Eating is a chore; lunch just arrived and he commented, "Time to get to work." We went out for a walk around the unit before lunch. He had been dreading that, but it went very well and I think he will be more apt to get up now.

The doctor's projection for release is now Sunday if all goes well.

Thursday, November 11, 2004 9:49 PM CST

At 9pm last night, Mark spiked a temperature of 102. He was admitted to United Hospital's ER around 10pm and the Oncology Unit at 1am this morning. IV antibiotics were started and his fever is under control tonight. He still isn't feeling very well, but much better than he was when his temp hit 103.8 last night!

We had some tough luck with a "temp" nurse last night, but the head nurse got things straightened around today and we've had great care since.

The Infectious Disease doctor confirmed his ear infection and ordered another chest x-ray to rule out pneumonia and bronchitis. The blood cultures have been negative so far and the doctor thinks the IV antibiotics should have no trouble clearing up any infection that Mark is fighting.

He'll be released from the hospital when his fever is gone, he's feeling better AND his blood counts are back into a "safe" range. That could happen as early as tomorrow, but most likely Saturday or Sunday.

Wednesday, November 10, 2004 8:30 PM CST

We're home from a long day at Mayo. We started with bloodwork. As expected, Mark's counts are very low (platelets 24k, white blood cells 0.6).

Dr. Zent found he has an ear infection and a very inflammed, raw throat. The condition, mucositis, is very common for chemo patients because the chemo destroys all the protective linings from his lips to his anus. After his last treatment, he had a lot of digestive distress. This time he is having nose, throat, ear, and sinus problems. Mark also had a chest x-ray which was clear of bacteria or fungus, so he was released with his favorite antibiotic, 4 other prescriptions and 3 over-the-counter meds. He should be feeling better by the weekend!

Wednesday, November 10, 2004 11:43 AM CST

We're in Rochester today. Mark was worse yesterday and Dr. Zent decided he should be seen today. We meet with Dr. Zent in a few minutes, so I'll write again when we know more.

Monday, November 8, 2004 10:46 PM CST

Mark is feeling a little better today. He's still very congested and his cough remains constant. I talked to his doctor today and he was sure the congestion and cough were chemo-side effects because of damage to his nose, throat, mouth, and esophogous linings. Hopefully, the antihistamine and decongestant he suggested will give Mark some relief.

Mark had bloodwork done today. His platelets and white blood cell counts were good; in fact, better than they were on Day 8 after his first treatment. So, that was encouraging. His INR was high, indicating he's prone to bleeding, but they made adjustments to his blood thinner and will check counts again on Friday.

Our new sitter Mindy came to do bedtime, so we spent the evening watching the Vikings game with Mark's parents. It's the first game we've watched all season. We really enjoyed our nice relaxing evening.

Sunday, November 7, 2004 10:55 PM CST

We made it through the weekend! I can't remember a tougher one (of course, my memory is shot, so it's probably not saying much).

What made the weekend so tough for me was the emotional energy it required. For Mark, it was all physical. He was sicker than he's ever felt in the last year of treatment. He could barely get from bed to bathroom to couch and back (although I continue to be amazed at how tough he is because he insisted on reading bedtime stories to the kids both Saturday and Sunday nights!).

For me, emotions ranged from overwhelming gratitude to breath-stopping fear. The fear came from the helplessness I felt watching Mark suffer and being able to do nothing for him.

The gratitude came as I felt "God provide" once again! We were gifted from many Roseville firefighters with the hard work of raking, blowing gutters, cleaning up after dogs, putting away deck furniture, and hanging Christmas lights on Saturday morning. The kids spent a great evening with the Van Nevels and Saturday afternoon with the Jacksons, giving me much needed time to catch up on chores. On Sunday afternoon, friends and family gathered to divide and conquer the "Care" schedule for Mark and the kids while Mark is undergoing his chemo/stem cell transplant in Rochester.

Trying to remain positive and focused on "now" as we head into the week of low-low blood counts for Mark. Thanks for your prayers and support.

Friday, November 5, 2004 10:32 AM CST

Mark and I got home from Rochester yesterday morning. Mark was already feeling lousy before we left. He's doing a good job choking down food and he was a good sport about taking a walk yesterday afternoon. Not surprisingly, he felt much better after he got back (the dogs did too!) and he was able to semi-enjoy Grandma Connie's homemade pizza.

I left work to meet him at MN Oncology for bloodwork this morning. His white blood cells and platelets are looking good. He got his Neulasta shot which will hopefully prevent a huge crash of in his white blood cell count next week. His INR is FINALLY in the acceptable range, which means we are no longer worried about clotting or bleeding. His blood will be checked again on Monday.

He's already "gearing up" to lay low for the next 10 days. We expect his counts to bottom-out around Wednesday. Uncle Paul and Uncle David have generously offered to accompany Luke and Allison at preschool "Dad's Night Out" that night.

We're glad to be home. The kids are showing signs of really missing our family routine. G. Loren and G. Connie are heading back north tonight and will be back Tuesday night.

That's it for now!

Wednesday, November 3, 2004 8:06 PM CST

Mark is out of the hospital and feeling o.k. He's definitely not feeling as well as yesterday, but feels better now that we've had dinner and a walk.

The only excitement in the hospital this time was juggling the coumadin and heparin doses to keep his blood from clotting. Because he had heparin he had to have an I.V. the whole time and at one point his I.V. in his hand fell out (!). Mark was quite proud of all the blood he left behind on that one! That shows how desparate we get for entertainment. I have nothing to complain about because my friends Mary and Andrea came to take me out to dinner!

Dr. Zent stopped in for a quick visit before we left the hospital. He talked to the transplant doctor today and they decided that Mark may only have one more DHAP treatment. Based on the CT scan in three weeks, they will balance the benefit of a 4th treatment and the risk of the toxicity of another round of chemo. He also said that scheduling a transplant is a complex process, involving the coordination of lots of resources and waiting lists, so it's possible that his high dose chemo/stem cell transplant will be in mid-December. That was a little discouraging because we really want to be home for Christmas.

Mark's optimistic that his recovery from chemo will go better than last time because he's prepared. I'm being cautiously optimistic. We're glad to be going home tomorrow and seeing the kids.

Monday, November 1, 2004 7:43 PM CST

We’ve had a busy, but good day at Mayo today. Based on Mark’s observations about how he’s feeling (specifically that his cough is better), Dr. Zent thinks there is a good chance that the cancer is responding to the DHAP chemotherapy. So, we’ll return in three weeks for a CT scan to measure the response. A decrease in tumor size of 50ould be an excellent response, but even if the response is as low as a 10eduction, he and his colleagues have decided that it would be best to proceed with two more rounds of DHAP after this one before proceeding to high dose chemo/stem cell transplant rescue.

Dr. Zent contemplated lowering the chemotherapy dose for this round because of his low platelet count at Day 12, but after learning that the blood was drawn from his port rather than his arm, he decided to give him a full dose, speculating that the low platelet count may have been an inaccurate reading.

We met Mark’s transplant doctor, Dr. Johnston. He walked us through the high dose chemo/transplant process. Based on discussions with Dr. Zent today, he is thinking that Mark will start the high dose chemo/transplant rescue process the first week of January (which Mark and I were thrilled to hear because it means we’ll be home for Christmas!).

The high dose chemo/transplant process is a 6 week process requiring Mark to live in Rochester with at least one caregiver present at all times. Here is how it will work:

Week 1 – tests of every major organ in his body to identify transplant risks; a psych evaluation; and minor surgery to implant a central line
Week 2 – growth factor to stimulate stem cell growth and then do the stem cell harvest
Week 3 – six-day hospitalization for high dose chemo
Week 4/5 – stem cell transplant; the transplant only takes a few hours, but for the next 14 days, blood counts are monitored 7 days a week and re-hospitalization generally occurs at some point
Week 6 – watch for evidence that the stem cells have grafted and the transplant was successful

As soon as engraftment has occurred, Mark is free to return home. Although it’s mapped out as a six week process, it often takes 8 weeks because of complications along the way.

It was great to get so much information today. That always helps. Mark is feeling good and optimistic as usual.

Mark is “excited” about having the opportunity to watch Election Coverage ALL DAY tomorrow. And everyone is amazed that he hasn’t lost any hair yet! I just hope it hangs on for our family picture at church next week!

Sunday, October 31, 2004 8:42 PM CST

We had a good Halloween. We enjoyed the fellowship and well wishes from so many at church this morning and had a great time socializing with neighbors tonight. My parents arrived in time to cover the door so Mark and I could be out trick-or-treating with the kids. It was a gorgeous evening and lots of fun.

We've tried hard not to spend energy thinking about this next round of treatment. We're expecting the hospital stay to be "pleasant" again with lots of care and fun with the excellent nursing staff. It's the 10 days following that are scary to think about. As always, Mark is optimistic and has hope that it will be better than last time because he's a veteran now. I'm trying hard to share that optimism. All I can see are germs and dirt everywhere and wonder how I'm going to protect Mark from that and the crazy stressfulness of just living here. I tried to convince him to stay in Rochester for the days following treatment, but he wants to be home.

We leave early tomorrow morning and meet with Dr. Zent and for the first time with Mark's transplant hematologist, so we're anxious to get a lot more information about the transplant and how to prepare for the pre- and post- care. If it goes like last time, he won't be admitted to Methodist until mid-day and chemo won't start until evening. So, it will be a long day.

Thanks for the continued support. We love the messages in the Guestbook. They are fun to read together and are always encouraging and supportive. :)

Wednesday, October 27, 2004 11:06 PM CDT

Mark had another good day. He drove to Stillwater to pick up his dad's family radio that he was having restored. He's wanted to restore it for years and finally decided this summer to go ahead and pay an expert to do it. It turned out beautiful. Mark is thrilled with it too.

It was a mixed day for me. It's the third anniversary of my sister, Liz's death. Although it still seems impossible that she is gone, I've grown to accept it and remember the great times we had together.

Corrine and I were able to enjoy a morning at home alone for the first time in weeks! Even though the twins go to preschool three times a week, I haven't had a single morning at home to catch-up since before Mark's rediagnosis. It was so nice to be able to make phone calls, finish paperwork and chat with Corrine without interruptions. I also treated myself to a long nap today. :)

Monday, October 25, 2004 3:30 PM CDT

We're having a good day today. Mark and I were able to vote absentee since we're going to be in the hospital at Mayo next week.

Mark had bloodwork done this afternoon and his platelets and white blood cells have rebounded! His red blood cell count has dropped, but it's not dangerously low.

And, he actually got a flu shot today!!! He talked to his doctor at Mayo who said he could get one at Mayo next week, but it wasn't a good idea to be getting vaccinated right when the chemo will be destroying his body's ability to build the immunity from the vaccine. So, he wanted him to get one this week. Mark's primary clinic, Minnhealth Larpenteur told us that Mark "didn't fit the criteria for a flu shot!!!" You can imagine the response I had to that! It took all of my willpower not to go totally ballistic! Fortunately, MN Oncology was able to give him one when he had his bloodwork done today. Thanks MN Oncology!

There is another CaringBridge website being maintained by Firefighter Terry Coleman. It's got some interesting and humorous entries in the guestbook. That website is:
www.caringbridge.org/mn/markschmaedeke.

Sunday, October 24, 2004 8:48 PM CDT

Mark is feeling much better. His appetite is back and he's feeling almost "normal." In fact, I was shocked to be awakened by him on Friday afternoon (for over a year, it's been me waking him up!). Isaac spent the day at his good friend, Sam's house, so Mark, Luke and I were taking a long afternoon nap. Mark actually woke up before me and felt good enough to venture to the grocery store. He was "starving!" He walked through the grocery store "like a normal person!" He was sweating and tired by the time he got home, but the trip was worth it (even though he wasn't supposed to go out with his counts so low).

Luke is definitely still in recovery after his Friday surgery. His pain meds work for about 2 of the 4 hours until he can take them again, so he's pretty crabby about half the time. He's eating and sleeping though and is making progress everyday.

Corrine and Allison are coming home tomorrow morning. Grandpa Loren, Grandma Connie and Great Grandma Alice are bringing them back from the lake and will stay the day and get some jobs done around here. They are coming back to Roseville again on Thursday to stay a week while Mark and I head back to Rochester for his second chemo treatment.

Mark got the dogs out for a walk and Isaac and I spent the afternoon selling Boy Scout Christmas wreaths in the neighborhood. It was great to be outside and enjoy the sunshine and beautiful fall colors. Adam and Molly came over to get our bills set up on Internet Bill Pay and stayed to enjoy a homemade meal brought by Jules.

Friday, October 22, 2004 2:36 PM CDT

Two pieces of good news to report today --

First, Mark is feeling better. His temp is back to normal most of the time and his blood counts are rebounding. Today his platelets are 14 and his white blood cells are 1.6, so no blood transfusion was needed. Yeah!

Secondly, Luke had his adnoids removed and ear tubes inserted this morning at Children's Hospital. The surgery went very well. He is home and doing well. The doctor said his adnoids were "huge" and full of junk, so his hearing should drastically improve. Yeah!

Grandpa Loren and Grandma Connie are taking Corrine and Allison to the lake for the weekend. Isaac opted to stay home so he could attend a gymnastics sleepover on Saturday night. We're looking forward to a restful, quiet weekend. Are we crazy to think we'll achieve that? One can always hope....

Thursday, October 21, 2004 11:52 AM CDT

We've had a little "excitement" at our house. Mark got a low-grade temp Wednesday afternoon. That combined with other symptoms (sore throat, rash and ear pain) prompted a visit to the United Hospital ER. A chest x-ray and EKG (ordered because of his pulse rate of 120) showed no sign of active infection or heart issues. The doctor saw some possible infection in his throat so he tested for strep and sent him home with a strong antibiotic. His platelets are 13 (blood transfusion of platelets will be needed if it drops below 10) and his white blood cell count is 0.2 (normal range is 4.5 - 11.0). Neither of these low counts is unexpected, but it does mean he is very vulernable to infection.

He is still running a low-grade temp this morning, but can stay home until it reaches 101.5. Of course, we're hoping that the antibiotic can take care of whatever is going on.

He's feeling somewhat discouraged because he's been feeling lousy for over a week now, but he is very thankful that he's home and not having to be hospitalized. He was planning on having dinner with his parents last night (he hasn't been out of the house except for bloodwork in over a week!), but he had to miss that because of his fever.

Thankfully, Jim, Sue, Emily and Sarah Christiansen were at our house doing dinner and pajamas with the kids, so I was free to take Mark to United. Adam and Molly relieved Jim and Sue around 8pm and stayed until we were home. The kids woke up happy and ready to spend their usual day at Mari's. So, they weathered the experience very well and that helps Mark and me so much.

Thanks to all for your e-mails, words on encouragement in the Guest book, cards and calls. Mark and I feel very supported and cared for and are so thankful for that!

Monday, October 18, 2004 9:23 PM CDT

Mark is starting to feel better, although he's discouraged by how long it's taking. He really thought he'd have a much better day today.

He had bloodwork done again today. His hemoglobin, white blood cells and neutrophils (which fight infection) are still good, but his platelets are very low. The normal range is 130-430 and his count is 62 today. Our Mayo nurse said that transfusions are usually required if the count drops below 20. We're still hoping that he can avoid a transfusion. They will retest on Friday.

I surprised our dear friend Peg (still in pajamas) with three kids on her doorstep this morning. She was expecting us on Wednesday. She calmly welcomed us in, invited the kids to stay and sent me to work with a big hug. In my first attempt at delegating daycare arrangements, I had given my mom (the arranger) the wrong date!

After a long, tough weekend (and several weeks), we had a great family evening starting with wonderful homemade chicken soup delivered hot to our door. We spent the evening building Legos and reading together. It was an evening that I hope we can repeat often as we figure our way through this experience.

I end the day feeling so grateful for my family and friends who are doing EVERYTHING imaginable to support us. It melts away the anger, fear and distrust that could easily consume me without it.

Sunday, October 17, 2004 10:01 AM CDT

Mark had another really tough day yesterday and was getting pretty discouraged. Early this morning he took some anti-nausea medication (that he had given up on a few days ago) and he's now feeling much better. Yeah!

Thanks to the firefighters who raked and mowed our lawn yesterday. That was a day-brightener (although Isaac was disappointed that his leaf-jumping pile was gone). He decided he could always rake our neighbors' leaves into a new pile for jumping. :)

I think I'm finally coming out of the "crisis-mode" with lots to do into the "yikes-this-is-reality" mode. I'm so thankful for all the wonderful friends and family who are helping me work on living in the moment and enjoying the great things about my life.

Friday, October 15, 2004 11:01 PM CDT

Mark is still feeing sick today, although he thinks he feels better than yesterday. We spent over 2 hours at MN Oncology today for blood tests and were pleased to see that Mark's red blood cell and white blood cell counts are not too bad. He got a shot of Neulasta which should keep his white blood cells from hitting rock bottom and his requiring a blood transfusion next week.

Mark had a great conversation with his St. Paul oncologist, Dr. Ducker, this week. Mark was very concerned about how to get medical help and bloodwork done in the Twin Cities when our primary relationship is now with Mayo. Mark was so relieved and pleased when Dr. Ducker said he would be happy to follow Mark's case and provide support when needed. The hardest part about deciding to get treatment at Mayo was knowing we'd be missing some great medical care at MN Oncology.

Corrine is studying "F" this week in Kindergarten and when Mark and I got home from Mayo she pulled me aside to "talk about the F-word." My mind raced as I imagined what she was going to ask me. Corrine whispered in my ear, "Do I have to get a FLU shot?" Giggling to myself, I gave the hard news that yes, she and everyone else would be getting a flu shot. We succeeded yesterday and everyone survived. Now if we could just find one for Mark!!!

My mom left for home after spending nearly two weeks here. It was really hard to see her go, but I know she was ready for a break. My dad gets home from his Utah hunting trip tomorrow. We've asked them to return on Thursday because Luke is have ear tube/adnoid-removal surgery on Friday. We're hoping that's the most exciting thing going on this week!

Thursday, October 14, 2004 4:02 PM CDT

Mark is having a tough day. After sailing through three days of chemo at Mayo, he was disappointed to be hit hard with nausea and dizziness as we drove home last night. He slept well last night when he wasn't interrupted by episodes of hiccups (a side effect of Ara-C). He has been in bed most of the day today. He feels better after eating although it's been a chore.

The kids are thrilled to have us home. We're planning on an uneventful weekend with lots of time for low-key play and conversation.

We're in the process of carefully planning our needs for the upcoming weeks and will let you know as needs arise. Kevin Kelly from the Roseville Fire Department, Laurel Hofeldt from Roseville Lutheran and my mom, Connie, have volunteered to coordinate food and daycare.

We continue to be so grateful for all of the wonderful people looking out for Mark and our family. God Bless!

Wednesday, October 13, 2004 9:20 AM CDT

Mark continues to feel good! He finished his first chemo last night and got started on his second drug. That was a 3-hour drip so he was done by midnight and thrilled to be able to sleep without an IV. The simple pleasures! We also learned that he can go home today rather than Thursday. Another pleasant surprise.

The chemo and supporting drugs have already taken their toll on his white blood cells, glucose, phosphorus and INR. All of this was expected and he's receiving drugs to counteract the effects. Days 7 - 14 are expected to be the hardest so we're planning a low-key week for next week.

The kids are hanging in there. Mark and Isaac were able to have a long conversation on the phone last night. Isaac had asked Grandma Connie if "anyone has ever survived heart cancer?" Mark was able to reassure Isaac that no one gets heart cancer and just because his cancer is very close to his heart, his Hodgkin's would not spread to his heart.

We've learned more about the schedule of his treatment although it depends on many variables. Here's an outline of what we're expecting:

Chemo Round 1 at Mayo: Oct. 11 - 13
Chemo Round 2 at Mayo: Nov. 1 - 3
CT scan: ~ Nov. 17

If the scan shows that the tumor has responded "very well" to the first two rounds, Mark will receive two more rounds. This would be the best case scenario:

Chemo Round 3 at Mayo: Nov. 22 - 24
Chemo Round 4 at Mayo: Dec. 13 - 15

The final chemo treatment (the "lethal" dose) with stem-cell support/transplant and recovery will take 6-8 weeks and will require Mark to be in Rochester with 24/7 care. That will start 2 - 6 weeks after his last chemo round.

So, if he has 2 rounds of chemo, he could start the final chemo/stem-cell as early as Nov. 17 and as late as Dec. 15.

If he has 4 rounds of chemo, he could start the final chemo/stem-cell as early as Dec. 29 and as late as Jan. 26.

Of course, we are hoping and praying for the 4 rounds because that means the chemo is working and the extra bonus would be that Mark would be home for Christmas.

We're sure you all have lots of questions. We've literally asked hundreds! I'm planning on posting many of our questions with the answers on the website. If you have a question about Hodgkin's or Mark's treatment, please send me an e-mail and I'll try to add it to the website. Learning and understanding is such an important part of this process for everyone.

Tuesday, October 12, 2004 11:34 AM CDT

Mark had a good night. So far, he's reporting no side effects. He was greeted at 8:30am by "TEAM ONE" a half-dozen residents and fellows coming to check on Mark's progress.

Mark's chemo is light-sensitive so the bag is covered by a brown plastic cover so it looks like a bottle of beer. Mark likes to imagine that it's really getting a continuous drip of beer coming in.

He called the kids mid-morning. Grandma Connie said they had a tough morning, but were doing fine now. On Sunday night, Mark gave each of the kids a Beanie Baby. He has a duplicate Beanie Baby of his own to take to the hospital. We described how these Beanie Babies were pals that would watch over Dad and each kid while Mark is gone and could actually communicate with each other. When Mark called this morning, Corrine quickly got her "Snowball" elephant out of her backpack (she's taking it for Sharing today) and had her elephant talk to Dad's elephant. It was pretty neat.

Mark's doctors want him up and about, so we're off to take a stroll in the hospital before lunch.

Monday, October 11

First day of treatment at Mayo -

Because we decided to proceed with treatment so late on Friday, no appointments could be set up until Monday morning. Therefore, we had to arrive at 8:30am "in case" our appointments were first thing. It was frustrating to learn our first appointment wasn't until 11:10 but we ended up enjoying our morning of leisure.

We checked our short-term housing and found a fabulous 2-bedroom apartment for the 6-8 weeks that Mark and I will be living in Rochester for his stem-cell transplant. We learned last week that Mark will need someone with him 24/7, so we're glad we could find a place with a bedroom for his parents, siblings or friends to have while they are with him. The caregivers were fabulous and have had lots of experience helping families with lodging during stem-cell transplants. They spoke our language! They understand the timing issues and have special procedures in place to accommodate the needs for cleanliness.

After spending nearly 8 hours in the last week with Mark's hematologist, we've developed quite a relationship. He's a great guy and can take and dish out the kind of humor that keeps Mark going. He's "pegged" me too - accommodating my relentless need to understand all the details and know as much of the plan as possible. He "warned" me or explained that even though Mark was getting admitted at 2pm, it could be late evening before chemo got started. That was so helpful to hear, because waiting hours (when you expect minutes) for treatment to get started is tough.

Sure enough, we didn't even get a hospital room until 3pm and fluids weren't started until 6pm. His first chemo drug (CISPLATIN) was started around 9pm. It is a 24-hour drip. He'll get his second drug, Ara-C on Wednesday and should be released on Thursday.

My friend Mary Herfurth surprised me with an invitation to dinner. It took me awhile to figure out she was actually going to drive to Rochester. In so many ways it seems like we're so far from home and in a completely different "world". So far, it's been a world that only Mark and I have entered. It's almost as if others that we know don't have access to it. So, it was refreshing to be in my "Mayo" world, but be able to step out of it for a few hours and enjoy the safety and comfort of a "Normal" world friend.

I was as tired tonight as I ever remember being. I'm staying at the Grand Kahler right across the street from Mark. It's been quite a day. So glad we're here and getting started.

Sunday, October 10, 2004

As Paul and Mark worked to clean up sewage, they talked about the upcoming chemo. Mark explained that these drugs could "fry my kidneys." Paul's response gave Mark a big laugh, "Ah, don't worry about that, we've got plenty of kidneys in our family! You only need one!"

October 10, 2004

We had a busy but good (and crazy) day preparing for our trip to Mayo. Andrea came early to take family photos for a fundraiser invitation that the Fire Dept Auxiliary is working on.

We went to church, but spent more time updating people than worshipping, but the hugs, smiles of support and offers of help were fabulous.

After nap, we enjoyed family time with one of our "old" Hamline gangs. It was a gorgeous fall evening, so we sat outside catching up, remembering fun from our nearly 20 years of friendship and watching the kids play wildly.

Life got crazy when Mark found the sewer backing up in the laundry room about 9:15pm. Grandma Connie quickly called Mark's brother Paul to come over and get Mark out of the sewer mess while I called several plumbers to see who could get here the fastest. The wet/dry vac was able to stop major damage from occurring before RotoRooter showed up. The problem turned out to be minor, but it added 2 hours to an already busy night of final preparations for our trip. Looking back, it's funny, but it felt so unfair at the time!

Saturday, October 9, 2004 11:12 PM CDT

Mark continues to feel good, although he can feel a little deterioration each day. His cough is very irritating, so Dr. Zent prescribed Codeine to help. That is already making a difference in how he feels. Mark was able to take advantage of the beautiful fall day and take the kids on a bike ride this afternoon.

October 8, 2004

After carefully reviewing the pathology, Mayo confirmed that the Hodgkin’s diagnosis was correct. We were thrilled that we could set aside all the anger and blame and sadness that might have gone along with a misdiagnosis. Because we were almost convinced we should stay at Mayo for treatment, Dr. Zent encouraged us to skip the U of M opinion and begin therapy right away. If there had been a new diagnosis or some evidence that the U of M was one of the “best” hematology centers in the world, we would have pursued it, but that wasn’t the case, so Mark decided to stay with Mayo. Quickly we were reeled into the scariness of what the next steps would be.

Because so few Hodgkin’s patients have a second round of treatment, the choices are few. In fact, the one that Dr. Zent prescribed is almost the same as the second round of treatment for Non-Hodgkin’s patients. He is undergoing a platinum-based chemotherapy treatment called “CISPLATIN (DHAP) with Stem Cell Support.” He is to stop working effective today.

Mark starts treatment on Monday with three days of inpatient chemotherapy. He will be home Thursday and resting for about 3 weeks before he goes back for a second round of three days of inpatient chemotherapy. Two weeks after that, they will do CT scans to confirm that the cancer is responding to the chemotherapy. If the response is excellent, they will do two more rounds of inpatient chemo. If the response is good, they will harvest his stem cells, give him a “lethal” dose of chemotherapy and immediately transplant his stem cells to “rescue” him from the effects of the chemotherapy.

October 6 - 7, 2004

Two frantic days of trying to understand how the diagnosis could be wrong, how we should have gotten a second opinion a year ago, how we might manage with Mark in Rochester for weeks, how to talk to our kids about what’s going on, how to decide between Mayo and the U and trying to figure out what to wish for – Hodgkin’s or something else?

October 5, 2004 - B

Dr. Zent suggested that Mayo pathologists review the biopsy slides and confirm the diagnosis or find a new diagnosis. It was likely they would recommend getting a “resection of a lymph node” which requires inserting a scope in a chest incision and grabbing a big piece of a lymph node. This is the definitive way to make a diagnosis of lymphoma. If Mayo confirms the Hodgkin’s diagnosis and we decide to pursue treatment at Mayo, Mark needs to be committed to living in Rochester for a minimum of 6 – 8 weeks. We were overwhelmed by it all. Although Dr. Zent released us for 3 days, Grandma Connie insisted that we stay overnight in Rochester and catch up on our sleep. We gladly accepted.

October 5, 2004

Mark and I arrive at Mayo at 9:30am. We are immediately impressed. At 11:00am, we finally meet Dr. Clive Zent. He spends an hour and a half answering our 25+ questions. Because Mark’s cancer never went into remission, his treatment is classified as “primary treatment failure.” This, along with other indicators, made Dr. Zent wonder whether the original diagnosis was correct. We were shocked! Dr. Zent suggested that because Mark’s cancer had gone from a highly-curable, run-of-the-mill form of Hodgkin’s to something quite different and hard to explain, that we pursue treatment at Mayo or the University of MN, the two National Cancer Institute cancer centers in the state. We immediately started working on getting an appointment at the U of M.

October 4, 2004

Grandma Connie arrives from the North Woods to assume care of the Schmaedeke Kids while Mark and Jen go to Mayo. (Grandpa Loren is in Utah Elk hunting with Uncle Lee.) Mark and Jen are told to expect to be at Mayo for 2 –5 days. After spending hours getting ready to leave the kids and preparing for the trip, I start to wonder if this is worth it.

October 1, 2004

Mark has an abdominal CT scan which is “clean.” It rules out the spread of the cancer to any other organs.

September 29, 2004

We meet with Dr. Ducker who is extremely encouraged by the fact that Mark is feeling good, strong and energetic. He confirms that the Hodgkin’s has spread – that there is not a new cancer in Mark’s lungs. He maps out a very aggressive treatment plan including high-dose chemotherapy with stem cell support (transplant). It feels good to meet with the doctor and understand the plan. Jen starts the rigorous pursuit of ALL of Mark’s doctor reports, x-rays, CT scans, PET scans and even pathology/biopsy glass slides. We are to hand-deliver them to Mayo.

September 28, 2004

Mark calls Dr. Ducker for results. He learns that all biopsies contain cancerous Hodgkin’s cells. Mark and Jen are devastated. We decide to pursue a second opinion at Mayo. Mark’s primary physician is able to get Mark an appointment just one week from now (we later learned that the current wait for most patients is 16 days).

September 24, 2004

The radiologist reads “biopsy” as his instructions. Luckily, we insisted on talking to him before the procedure because we clarified that both lung nodals and remaining tumor should be biopsed. His initial read (before biopsy) is that the nodals are cancerous, but fungal nodals are usually hollow. The procedure takes 2.5 hrs. (instead of the predicted one hour) because initial readings from the pathologist showed “no cancer cells.” We left feeling very optimistic!

September 23, 2004

We line up daycare for the day and skip work, awaiting news of the biopsy appointment. By noon, we track down that the appointment won’t be until the following day. Very frustrating!

September 22, 2004

A chest CT scan reveals “innumerable” nodals on his lungs. The oncologist speculates that they are cancerous or fungal. A biopsy is scheduled for the next day.

September 20, 2004

The chest x-ray reveals “shadows” on his lungs.

September 17, 2004

The cough feels “different” from the cold cough, so Mark’s doctor orders a chest x-ray.

September 3, 2004

Mark gets a cold with a cough that lingers.

July 30, 2004

Mark has a PET scan to check for residual malignancy. Unfortunately, some is found. Hope remains that the residual cells are not viable.

June 25, 2004

Mark has a follow-up CT scan. His tumor has shrunk but not as much as expected. It’s now 6cm x 2cm. Mark remains very optimistic.

May 1, 2004

Mark rallies and joins the family for a 3-day trip to the Wisconsin Dells via the Amtrak Train. Although exhausted, he puts forth his best effort and helps us all have a much-needed fun vacation. Our first family vacation, other than trips to the cabin.

April 26, 2004

Unfortunately, the tumor has not decreased enough to reduce the radiation field. Dr. Farniok decides to give Mark his last radiation treatment on March 27 instead of March 29.

April 22, 2004

Dr. Farniok orders a CT scan because she’s reaching the threshold of radiation that she can give to his heart. She’s hoping the CT scan will show that the tumor has shrunk enough that she can reduce the radiation field.

April 17, 2004

Even though it's not part of Mark's cancer journey, it did happen during this tough year and it's a night I'll want to remember.

At the Annual Roseville Fire Dept. Recognition Dinner, Mark was awarded one of the Chief's Excellence Awards. He was the last to be recognized and I was flooded with tears. Weeks earlier I had asked the Chief if it would be appropriate to have a few minutes at the dinner to recognize every thing the Fire Dept. had done for us. Of course, it was at the very end of the evening as I was crying my eyes out over Mark's Award that the Chief called me up to "say a few words." Luckily, Mark escorted me and did all the thanking because I couldn't have choked out a word if I had tried. What a night. The kids and I are so proud of him!

April 5, 2004

While he’s not feeling much better, at least he’s not feeling worse. He’s starting to see the end in sight and is so relieved.

March 29, 2004

Mark concludes that it is the radiation because he starts feeling better on Sunday, but then gets run right back down. He is really discouraged. He doesn’t know he’s going to take weeks and weeks of this, especially if it gets worse.

March 23, 2004

Mark feels like he’s been hit by a truck. He can’t believe it’s the radiation because it’s only been 3 days. He’s exhausted! He hopes it’s something else that’s got him so run down.

March 19, 2004

Mark starts radiation. For the first time, Jen doesn’t attend appointments with Mark. Five days a week Mark drives to United Hospital / Radiation for his 10 minute radiation.

March 16, 2004

Mark and I meet his oncologist, Dr. Farniok. I learn that she is the sister of my co-worker. We’re very impressed by her and look forward to working with her. We’re amazed at the different in the pace of the clinics. The radiation clinic is much calmer and relaxed than chemo.

March 8, 2004

Mark gets CT scans in preparation for radiation. These show some more shrinkage of the tumor, but not as much as might be expected.

February 25, 2004

Mark is done with chemo. It has gone very well, but Mark has had enough. He’s ready for some recovery time. We will miss very much our chemo nurses who made the experience a joy. Nurses Susan and Fran were a wonderful gift from God.

January 30, 2004

Thrilled to have the same blood type as Mark, Jen and Grandma Connie go to Red Cross to give a “Directed Blood Donation” in case Mark needs a blood tranfusion as his red blood cell count continues to drop. Jen is disappointed to learn she is too anemic to donate.

January 26, 2004

Mark gets out of the hospital after 6 days with a “neupogenic fever” which is a common side effect of chemo. Many, many tests are run, intervenuous antibiotics are given and Infectious Diseases experts are called in. A source of the fever was never determined (which is usually the case.)

December 31, 2003

For the first time in many years, we celebrate New Year’s Eve at home alone because the risk of catching a “bug” is not worth it. We fill a pinata and the kids break it apart in the basement.

December 29, 2004

Mark has his first CT scan after starting chemo. It shows a near-double reduction in the size of the tumor. This is great news!

December 24, 2003

Mark notices that his hair is falling out in clumps.

December 17, 2003

Mark discovers a blood clot in his left arm and begins his “consumption” of Coumadin. He is often teased by doctors and nurses for his over-consumption. He needs a HUGE doses (10 and 15mg every other day) to keep his blood from clotting (INR between 1.8 – 2.0).

December 3, 2003

Mark has to miss chemotherapy because his blood counts are two low. Mark has been done working for awhile. He tried, but it was too tiring. Jen starts giving Mark daily shots of Neupogen, a drug which stimulates bone marrow stem cell production.

November 29, 2003

Mark is pleased he’s not having any nausea, but he is exhausted. He’s pretty much bed-ridden today as he battles dizziness.

November 24, 2003

Mark grants the chemo nurses’ request for a “PORT.” Although Dr. Ducker didn’t think it was necessary, Mark followed the nurses’ advice. A port was surgically implanted below his right collarbone and allows nurses and the chemo drugs direct access to the main artery into his heart. This prevents severe vein damage that would occur as the drugs traveled from the I.V. up the arm and relieves the nurses fear of burning a patient’s or their own skin with the toxic chemo drugs.

November 20, 2003

Mark starts “Stanford V” treatment. Although not the “standard” of care for Hodgkin’s, it’s been experimental for many years and is concerned “as good or better” than the standard AVBD treatment. It requires 12 weeks of weekly chemotherapy followed by 5-6 weeks of radiation.

November 10, 2003

Mark is officially diagnosed with Hodgkin’s Lymphoma, Stage 2B. He has a huge mediastinal tumor measuring 10 x 13 cm. Mark tells the kids about his “Hodgkin’s.” Isaac immediately asks if he is going to die. Mark responses with a definitive “NO”; he is strong and healthy and tough with good doctors and good medicine. The kids are very accepting of the news.

November 4, 2003

Mark hasn't felt good all summer. Finally, Mark’s persistent cough warrants a chest x-ray.

Saturday, October 9, 2004 2:44 PM CDT

Mark will be admitted to Mayo / Rochester Methodist Hospital on Monday, October 11 for 3 days of chemotherapy.

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