History

Sunday, August 31, 2008 4:37 PM CDT

What a busy summer! It feels like it just got here, but we're already getting ready to go back to preschool next week!

We had a lot of fun this summer. Madeline took swimming lessons and learned to swim on her own, so we spent many days at the pool practicing and enjoying her new skill.

We spent a week in Door County, WI with Brent's family in July. In August we spent a week in ND at my parents' farm.

We got a puppy at the end of May, and we've experienced the joys and frustrations of puppy training! Theodore is a cockapoo (Cocker Spaniel/Poodle mix), and he's growing into a great dog. There's still some kinks to work out with him, but he's learning!!

Our most exciting news is that Brent's stem cell donor from his transplant 3 years ago is coming here to meet us. Wilfried and Irene are traveling from Germany to spend two weeks here in Minnesota with our family. We have plans to bring them along to Mayo for routine appointments, spend some time at the cabin, and show them a few other Minnesota things, including a Twins game. They arrive tomorrow afternoon.

Thanks for all the continued prayers. This journey still continues to be difficult -- Brent's health varies on a daily basis. God is blessing us in many ways, though, and for that we are very grateful!

Love,
Brent, Heather, and Madeline

Monday, April 14, 2008 12:36 AM CDT

Many of you may be wondering what it is like to live five plus years on the very edge between life and death dealing daily with terrible pain and disappointment. This has been our experience and challenge and continues even today. It is becoming more difficult to know just what to say when people ask, “How are you doing?” It has been hard yet we have so much to be thankful for. Madeline is four years old therefore she has lived her entire life surrounded by Brent’s battle and knows nothing else. Thankfully, she is strong and well and a great source of comfort for both of us. What a gift she has been to us and to all who have met her.

March was a difficult month with Brent in the hospital for four and a half weeks. Easter was spent with some kind friends in Rochester, as Brent was only able to leave the hospital for a few hours before returning that evening. It was a difficult time for all of us, but we are pleased to report that Brent is finally home and feeling much improved. Brent has rebounded remarkably throughout his many complications over the past five years, but this time it was slow in coming. We marvel at his determination to get well and the inner strength which he repeatedly must draw upon. Brent’s spirits are good and we appreciate all those who have encouraged us and have prayed for healing and comfort during this difficult time. We have needed to lean on your strength and that will continue for yet some time.

We are so much looking forward to summer and being able to do some of the simple things that families do during these special months in Minnesota. We look forward to enjoying our family and our friends once again. We have missed you!

Life has been incredibly busy since Brent came home, but it has been very exciting to have Brent be healthy enough to be with Madeline while I'm working much of the time. We're all very excited about this -- they get quality, much-needed daddy & daughter time, and I am able to get away on my own for a bit. Praise God for such simple things! The dark times truly do make us appreciate life much more fully.

Heather, Brent, and Madeline

FYI -- we have disconnected our home phone, and now just have our cell phone numbers. Email us if you don't have them.

Monday, March 10, 2008 12:05 AM CDT

March has been a month of challenge for us. Brent has been hospitalized at Mayo with a variety of setbacks and considerable discouragements. His skin GVHD rash seemed to return early in the month, which gave us all a huge scare. It has since proven to be an allergic reaction to medications (which they have yet to identify). What great news and a wonderful relief for us that it was NOT GVHD. We are praying that Brent's GVHD will settle down completely and that he will regain his strength and his joy for life.

I have been very busy with accompanying jobs for area high schools, piano students - including Emily and Linnea, and trying to find ways to keep a normal life for Madeline. We have been down to see Brent as often as we can and these times have proven to be healing for all three of us. Brent's parents have been down in Rochester off and on, much of the past three weeks.

My mom is arriving today to help me out for a few days while Lee and Fern are with Brent. We are also anxiously awaiting a new cousin for Madeline -- Ryan and Laura are expecting their second child any day!

We appreciate the words and acts of caring and encouragement we have all received. Please pray that Brent will experience God's special healing and comfort in the days ahead. Our needs are great and He is able!

Madeline routinely prays each night: "God, You are big. You are strong and You are mighty and You are healthy. Help us to be healthy like you, God." And then we discuss how we will never be just like God, but we certainly strive towards that, and we rely on His strength to help us have strength for each day and each obstacle.

We're all also itching for spring. The other day while we were sitting outside waiting for the gas company to come (my CO detector went off, but it turned out to be just fumes from cooking onions), Madeline was digging around in the snow, noticing the old, dead grass from last year. She instantly said, "God, we need new grass." I love her child-like attitude and trust in God. I love how she talks to him throughout the day. We certainly learn lessons from her and her faith. Praise God for children!

Heather, Brent and Madeline

Sunday, February 3, 2008 11:51 PM CST

Hello again. This month has flown by, getting back into "normal" life after Christmas. I'm now teaching 15 piano students, which has altered our lives and schedules significantly, but I'm so glad to be back teaching. I didn't realize how much I missed it in the three years I took off.

Madeline is back at it with preschool, dance, and Cubbies (AWANA). She loves her social lifestyle, always asking "how many days until...???..." She now tells everyone that she's going to be a dance teacher when she grows up, and she informed me the other day that she won't need to go to school to learn how to be a teacher, because she already knows how from her teacher!

Since our last update just after New Year's, Brent has had his second cataract surgery, so he has much clearer vision now, although he will need glasses some of the time. (He had cataracts as a result of the radiation prior to transplant in '05.) He also had a benign tumor removed from his tongue. He is slowly regaining strength following his pneumonia in Dec. and the two surgeries in Jan. It's so hard for him to wait through the recovery process, but it's a necessary process. He is still very discouraged. It's so hard for him to see normal life go on around him while he isn't able to fully participate. And it's hard for him to see ramifications of his illness affecting other people. Pray for encouragement and peace for Brent.

We are hoping, praying, and trusting that this year will be a better year for Brent's health and our family. We know our family is in God's hands, yet it's hard to understand why so many of the things that happen happen.

This weekend marked the five year anniversary of Brent's first leukemia diagnosis. These five years have been a very long time for us!

Anniversaries usually send my mind whirling -- thinking about all that has happened in the time passed, and wondering where we'll be that many years in the future. Again, we trust God, knowing we are in His hand. I find focusing on Christ and not our earthly situation is the ONLY way to find hope through such times. I sang a song last Sunday at GCR entitled "Captivated"by Vicky Beeching. The lyrics are phenomenal, and I consider it a personal challenge to live by them! (See the top of the page for a portion of the lyrics.)

Please don't get the impression here that I have it all together... quite the opposite! I struggle daily with questions of "why?, when?, how long?, what for?" It's truly a battleground in my mind, and I have to choose to focus on Christ or all the questions and uncertainties overtake me. Pray for us that we will be able to maintain focus in the right places. Pray for us that we will know how to answer so many of Madeline's questions. Pray that we will trust God in His directing of our lives.

Thank you for faithfully checking in on us, supporting us, praying for us, and loving us for five years. We cannot express enough how much we value our support system. Thank you!

Love,
Heather, Brent, and Madeline

Wednesday, January 2, 2008 1:21 PM CST

It has been a busy couple of weeks since Brent came home. We celebrated Christmas with both of our families, but we did all the celebrating here in the Twin Cities so we were close to home.

Brent's lungs have definitely improved, but his stamina is still very lacking. He spends a LOT of time sleeping and is feeling overwhelmed by life right now.

We were able to take Madeline to "Alvin and the Chipmunks" last night. We had lots of fun, although she's not so good at the sitting still part of going to movies.

Brent still needs your prayers for health, peace, and strength. We are so thankful for the prayers over the years, and we ask you to continue!

Heather

Wednesday, December 19, 2007 10:10 PM CST

Brent is home! He came home this afternoon and is doing much better today than the past couple of days, physically and emotionally.

Madeline has shown some strong emotion in the last day or so. She had a very passionate prayer last night at bedtime -- asking God to give the doctors wisdom to help all the people at the hospital who are sick and need help. This afternoon we heard a siren and she commented that those are the people that come help when people have a hard time breathing. She recognized Daddy's smell on the sheets of our bed yesterday, and tonight at dinner, with Brent home, she clung to his arm and cried while he prayed for dinner and for our family.

She was planning to go spend the night at Papa Lee and Grandma Fern's house tonight so I can clean up the tornado in our house tomorrow. After her emotion at dinnertime, we sent Brent with her to Lee and Fern's house. She needs her daddy tonight...

Lee took her to Cubbies tonight so Brent and I had a while together this evening before they went to Andover. Now I'm on a mission to clean up the mess that our house became in the past week. And hopefully I'll get some Christmas wrapping done, as well....

We are so thankful to be home together for Christmas. We will be celebrating in Lino Lakes with my family at my brother's home, and then later we will celebrate with the Carlsons. The Carlsons were planning to go to Door County, WI after Christmas, but those plans aren't certain at this point.

On a funny note, I had Madeline throw a couple of things in Brent's stocking today and she took it down and came to tell me, "Mom, Daddy's stocking is really full -- there's no room for Santa's stuff!" She also said to me, "Mom, your stocking is the only one that doesn't have anything in it yet!" I guess someone around here will have to go shopping, huh?

I have my childcare needs covered for the next couple of days -- thanks for those of you who offered. And thanks so much to those who are providing some meals for us. We really appreciate that. (And thanks Michelle for organizing!)

Thanks again for all of your prayers through this past week. We were frightened and weak, and we thank you all for carrying us through with your prayers, visits, and tangible help. We covet your continued prayers as Brent's recovery is by no means complete. And thanks in advance for the meals and other help... it's more helpful and meaningful than you can imagine!

Off to my Christmas cards,
Heather

Monday, December 17, 2007 1:07 PM CST

Brent is still hospitalized and is becoming very discouraged. Please encourage him with a phone call, card, message here, or maybe even a visit. I updated the contact information at the bottom of the page. You can mail him a card at the hospital or call on his cell phone. He may not answer as he has a hard time talking, but please leave him a message that he can listen to.

Madeline and I both have colds now, so we aren't able to visit until we get better.

Every day is one day closer to Christmas, and we are so wanting to be home together for Christmas.

Thanks for checking in, and please do something to encourage Brent. He's feeling pretty lonely right now.

I'm still working this week, so I do need some help watching Madeline while I teach. Any takers of a sick kid?

Keep praying!!

Heather

Saturday, December 15, 2007 10:51 PM CST

Brent is continuing to improve. He had a nice quiet day today -- his parents were there for a while, and Madeline and I came for just a bit this evening.

I attempted to catch up on some things at home today and then I played one song in the Cornerstone Church (formerly Olivet) Christmas program. It was great to see so many familiar people there. Thank you for all your prayers. Even though we don't attend there anymore, Cornerstone will always feel like a home to us.

I continue to be amazed at how well Madeline handles the hospital. Tonight she got to go with the nurse to get all of Daddy's medicine. I peeked at her walking in the hall with the nurse, and she looked so proud and important!

Nothing has grown from the cultures yet. I'm not sure exactly what that means. Brent continues to have some breathing treatments a few times each day as well as antibiotics. He is completely off the blood pressure meds and his pressure is maintaining just fine. He is getting some nasty-tasting potassium supplementation as his levels are low, yet not low enough to get the IV form of potassium.

We still have no anticipated date of discharge. We've been told to not expect going home for a few days. He is definitely still weak. I guess I really don't know what to expect -- we're just taking it one day at a time.

Heather

Saturday, December 15, 2007 1:36 AM CST

Brent was transferred out of ICU today (Friday) to a regular hospital floor. Praise God! He's doing much better, although there's still no word on an anticipated discharge date.
Thanks again for all the prayers and messages.
Heather

Thursday, December 13, 2007 9:03 PM CST

Today was a much better day. Brent is improving significantly in many ways. He is completely off the blood pressure medications. Most of the day today he used only the nasal canula oxygen (the tubes that sit just inside your nose). He did use the Bi-pap when he slept last night and napped this morning -- it helps him to rest better.

He seems to be regaining some strength. Madeline was up at the hospital for 7 hours today, and he was able to handle that added energy (although Papa and Grandma did keep her entertained with hospital tours for much of that time.) She enjoyed getting rides up and down on his hospital bed,and she had the nurses get her a bracelet and some ice cream.

At first when we got there she seemed a little tentative, but it didn't take her long to realize that it was just Daddy behind all the tubes and wires. I really admire her strength. She sees so much for such a little girl, and she really seems to take it all in stride.

Brent's nurse told me tonight that he will likely be transferred to a regular hospital unit soon, although as long as he needs/wants to use the Bi-pap, he'll stay in ICU.

Nothing has grown from the blood cultures yesterday, which is typical. Usually it takes at least a couple of days to get results.

Madeline's preschool class prayed for Brent during Circle Time this morning. Thank you Gloria and Judi! We are so appreciative of all the prayers, messages, calls, and emails we continue to receive. Thanks so much for seeing us through yet another struggle. We've had a lot of offers for tangible help, and those offers are very appreciated and not taken lightly. I'm guessing once Brent gets home some of our needs may increase, and I will not forget those of you who have offered help. Thank you.

Love,
Heather

Wednesday, December 12, 2007 5:25 PM CST

We woke up this morning to Brent having a very difficult time breathing. He has been feeling like something may be coming on for a couple of days, but this morning was much more severe.

Brent was scheduled to be at Mayo today for a recheck of his eye (he had cataract surgery last week.) Lee was planning to take him to Mayo, so he was at our house shortly after I woke up.

We decided very quickly to call 911 and the police and paramedics arrived in about 2-3 minutes. The police officer got Brent on oxygen right away and then the paramedics further checked him, finding his blood pressure to be around 50/30.

They carried him downstairs on a chair and got him on a stretcher and into the ambulance where they got him on a C-Pap machine to help his breathing.

I rode along in the ambulance to Methodist Hospital in St. Louis Park. (Please remember when you are driving to pull over for an ambulance! I could not believe how drivers were so oblivious to an ambulance with lights, sirens, and horns blaring. In all of the drama we've experienced in the last five years, this was actually our first ambulance trip.)

ER doctors got to work very quickly. We were blessed with wonderful doctors who were decisive and efficient in taking care of Brent in those first couple very scary hours. His blood pressure continued to be very low, so they starting working to increase that. They also put a central line into his neck, started antibiotics, and took chest x-rays. He was on a Bi-Pap machine, and they were at the point of wanting to intubate him and put him on a ventilator to control his breathing.

Thankfully the intubation never had to happen. That's one step further than anything he's experienced in the past.

Sometime in the late morning his pressure started increasing enough and he was stable enough that they trasferred him to ICU here at Methodist.

They are unable to do a CT scan at this point to further look at his lungs because his kidney levels are too high to tolerate the dye necessary for a CT.

They are treating him for pneumonia and low levels of sepsis. He is on very broad spectrum antibiotics as they are unsure of the nature of what bug is causing his infection.

His blood pressure has come up to a more normal level with lots of fluids and blood pressure meds. They will work to wean him off these meds while making sure his levels stay where they need to be.

He has been conscious and talking through all of this, even joking around with some of his visitors. Fern, Doug and Pastor Steve from Grace were all there while we were still in ER, and Lee came shortly after.

Madeline is spending the day with the Dykstras. She handled all the drama this morning surprisingly well, but I'm sure she'll have lots of questions and concerns in the coming days.

I'm just so thankful that Lee was at our house this morning and that we have friends so close by that could take care of Madeline at a moment's notice. Pray for the right words to come to us when she asks questions. Brent's illness gets increasingly harder on her the older she gets as she is able to understand and observe more and more. Looking out the window and watching Mommy and Daddy get in the ambulance this morning and having medics and a police officer in our house first thing in the morning was certainly upsetting to her. But most upsetting to her is seeing her Dad so sick. She remembers very little of the worst of Brent's illnesses as she was only 18 months at the time of transplant.

Papa Lee prayed with her after we left and then did some "normal" things like breakfast and coloring with her for a while.

We have no idea what the length of this stay will be. I do know that he will be in ICU as long as he requires blood pressure medications.

This was a huge shock to us, as he had been doing so well for quite a while. Sunday he was at both church services to see Madeline sing in the Preschool Choir and say a memorized verse into the microphone in front of 500 people each service!! ("This will be a sign to you: You will find a baby, wrapped in cloths, lying in a manger.") He has been taking care of Madeline a lot more lately as I have started teaching piano for Son-Sheim Music School. We are just reminded once again of the frailty of human life and of Brent's body in particular right now.

Pray for the doctors' wisdom and clarity in treatment plans. Pray for Brent's spirits that he would stay positive and not get too discouraged. It's so hard to be in the hospital at Christmastime yet again. Pray for peace for all of us. It's so hard to see him like this AGAIN! We have no idea what will unfold, so please keep us all in your prayers. We're all still pretty much shocked that this is happening.

We do have both internet and cell phone access here in the hospital although all of our cell phones are currently dead.

We are also very confident and comfortable with the care he's receiving. We're in touch with his Mayo docs, so they are aware of what's going on.

Thanks for checking in. I'll try to be consistent in updating this in the coming days.

Heather, for us all

Wednesday, December 12, 2007 12:41 AM CST

Please pray. Brent is in the ICU at Methodist Hospital.

Lee and Fern Carlson

Tuesday, November 13, 2007 10:03 PM CST

Hello Everyone

Brent has more energy and can function more normally now that he is being treated for adrenal insuffiency. However, in the last few months he has developed cataracts in both eyes. His vision, which has always been his strength, is continuing to blur. Surgery can be done, but he has been encouraged to wait as long as he can.

Below is an excerpted copy of an article in the November 13th Minneapolis Star Tribune (page A 6) describing Graft vs. Host disease as the “dark side” of bone marrow and stem cell transplants. Brent has certainly experienced this in the extreme, which is why the National Institute of Health wanted to study him.

BONE MARROW TRANSPLANTS CAN HAVE DEADLY SIDE EFFECTS

“Bone marrow transplants are one of cancer care's striking successes, but they have a dark side: The transplanted cells can turn on patients, attacking their skin and organs. The potentially deadly side effect called graft-versus-host disease, or GVHD, strikes several thousand each year. The last decade has brought little progress in battling it… It happens in at least half of the more than 6,000 Americans who receive donated marrow or stem-cell transplants every year.

Many times, GVHD is mild or moderate, causing skin rashes or blistering, vomiting, liver or lung damage. But one of every five cases is life-threatening. A particularly dangerous form ravages the stomach and intestines….. The only treatment: Super-high doses of the steroid prednisone for weeks, to suppress out-of-control immune cells and the inflammation they cause. But the treatment's side effects are severe, even deadly

‘They're our best friends but our greatest enemies,’ is how Dr. Steven Pavletic* of the National Institutes of Health describes prednisone and its cousins."

Brent has experienced these and other painful side effects from Graft vs. Host Disease. It has been a frustratingly long battle, and Brent is weary from the fight. He needs even more encouragement and prayer from all of you than ever before. The emotional and psychological “where and tear” of this struggle has affected him and others like him. The medical profession is doing everything possible to treat the physical side of treatment. It is folks like you who can give him the encouragement and support he so importantly needs to handle his grief issues and heal. Please continue to uphold him and his little family in prayer.

*The doctor who is in charge of Brent’s study. He was at Mayo a couple of weeks ago, and he talked with Brent’s Mayo doctor while there.

Thursday, October 18, 2007 11:27 AM CDT

We are pleased to report that Brent and Heather are making progress toward building a new life after nearly five years of dramatic health struggles. Our last report indicated that Brent had regained some of his old energy and strength and that he was trying to find ways to restart his life. His hip replacement is well healed, and he is moving around like his old self.

Since the last update, Brent traveled alone to the National Institute of Health in Baltimore, Maryland on Monday, September 19. The trip would have been difficult without knowing that his good friend, Charlie Schlaman, who lives and works in the DC area, would be available. Charlie was there to talk to and to do things with at the end of the day. On Saturday, Charlie gave Brent a guided tour of the DC area before taking him to the airport for his flight home.

Brent had a busy schedule of appointments and tests from Tuesday through Friday, which left him completely exhausted. As a result of his visit,he now has a portfolio at the Institute, and will be followed for several years by the Institute through the Mayo Clinic Doctors. He will also have periodic medical appointments at the Institute which will allow the Doctors there to have the benefit of learning from Brent’s experiences, as they develop a new, and hopefully improved, approach to treating the rejection of donor stem cells. (GVH)

Brent was told, among other things, that he has cataracts, scarring in his lungs, and some GVH in his gut. He continues to struggle with adrenal insufficiency though this has improved through recent med. adjustments.He still feels tired and ill much of the time. It takes a lot of his time and effort each day for him to “baby-sit” his body, as he often reminds us. It is so much better but it still is a big part of each day.

Madeline celebrated her 4th birthday with a BIG PARTY on September 30. Her parents, grandparents, family, and friends (and friends parents) joined her for a grand birthday bash planned for a nearby park. Rain, coming in “buckets”, moved the party inside of their Robinsdale home. Believe it or not, 40+ people “fit” into available space without discomfort or mishap. It really was a most wonderful day, and Madeline, in her special way, made the most of it. She had all her favorite people right there with her and that is all any new 4 year old could wish for. She beamed from morning to night!

Thank you for your encouragement and for your prayers. Brent, Heather, and Madeline have come along way, but they still need God’s touch of healing and grace. Please continue to lift them up as you have in the past.

Lee and Fern Carlson
Brent's Parents

Tuesday, August 28, 2007 8:27 PM CDT

August 2007

Brent’s health concerns continue to be of concern though definitely improving….

Brent was diagnosed with Adrenal Insuffiency in June of 07. He sought medical intervention both at the U of M and at Mayo. Brent’s situation in unusual and very complex so it has been difficult to know exactly how to deal with it effectively. His Doctors have tried several approaches and now have him using hydro-cortisone to try to bring his energy level back to normal in the mornings and consistent throughout the day. Brent is over-joyed to finally be “awake”. He is still not feeling well, but he is “awake”. He feels like he has been in a fog and asleep for most of the past four years. He has been told that it is miraculous that he is alive and survived this adrenal condition for well over a year. Due to all the extremes of his health needs, he has been invited by the Mayo Clinic and the National Institute of Health to travel to Maryland in September to tell his story to those who are researching graft vs. host disease. He is looking forward to this special experience in hopes of his pain and suffering would benefit future patients.

Brent has just been discharged from Mercy Hospital in Coon Rapids where he was treated for Intestinal Prolapse and Irritable Bowel Syndrome… doing somewhat better!

Brent has orchestrated his own medical and self-care during difficult conditions, and as hard as it has been his team of family, friends, and a wonderful group of medical professionals has always been there for him, cheering him on. We can’t thank his treatment team more for all they have done for Brent and for his family. Brent’s fighting spirit and God’s Grace has been consistently evident throughout these past 4 and half years. It is wonderful to see Brent coming back to his old self.

The Summer has been very difficult for Brent and Heather‘s marriage, and certainly difficult for their Madeline. Please continue to pray for them and encourage them during these days of adjustment and trying to start their life over after a long battle in survival mode.

Lee and Fern Carlson
Brent’s Parents

Monday, July 23, 2007 11:52 AM CDT

Thank you, everyone, for visiting this site and for praying for Brent, Heather, and Madeline. This last month has seen high and lows in Brent’s recovery. Brent was given the identity of his donor in late June, the day before his donor’s 51st birthday. This was an exciting day for Brent and for all of us in his family. Brent has been able to contact his donor, and they’ve exchanged pictures and e-mails. We are so thankful God allowed Brent to contact this wonderful man. We have yet to hear his story as to now he was listed on the International Donor List. He and his wife live in Germany where he has been employed for many years in a large car manufacturing company. They and their son have traveled the world and have done many exciting things.

Brent, Heather, and Madeline need yours prayers more now than ever. As you read my guest book entry, I elude to ongoing struggles and the need for God’s hand in their lives. These last five years have been very traumatic for the three of them, as well as for our families. We’ve experienced the full spectrum of emotions, and time has not diminished the trauma experienced during these years.

Brent’s blood pressure is extremely high, and he continues to experience the symptoms of adrenal dysfunction. We ask for your prayers that the doctors find a satisfactory answer and resolution to the multitude of symptoms and side effects Brent is experiencing. I don’t know the answer to all of this. Only God knows.

Fern Carlson
Brent’s Mother

On the behalf of
Brent, Heather, Madeline
and our families

Friday, June 15, 2007 10:08 AM CDT

Last week we finally got the results from all of Brent's testing. His adrenals have simply shut down from the long-term steroid usage. There is no underlying problem with the pituitary or anything else. Praise God!

The temporary fix for the problem is to use steroids (prednisone) at the level that the body naturally produces -- Brent's body doesn't produce any, so he is now taking 5-7 mg/day to replace what his body is missing.

The long term plan is that once his Graft vs. Host settles down enough to stop ALL steroids (creams, inhalers, stomach steroids, eye drops, etc.), then they'll take Brent off the prednisone, too. At that point, his body will likely crash for several weeks to a couple of months and hopefully the adrenals will kick-start themselves again.

So far, he's been feeling much more energetic. He's still not back to normal by any means, and the prednisone is quite hard on his stomach, so he fights nausea much of the time. But, he is able to do things that he enjoys, and for that we are very thankful!

Tonight we are attending a black tie event for the Leukemia and Lymphoma Society. We did this last year, as well, and it's so fun to get all dressed up and go to a "fancy party." (That's how we explain it to Madeline, anyway!)

Heather

Our Neways International Web Site:
http://www.ineways.com/worldwide

Sites of interest:
Cancer Prevention Coalition
http://preventcancer.com/

How Alternative and Convention practices can work together to regain your health!
http://www.credence.org/

Monday, May 28, 2007 9:56 AM CDT

We still have no concrete answers about specifically what is wrong with Brent. We do know that both his adrenals and his pituitary gland are involved.

Last week they started him on a low dose of prednisone, and he has improved quite a bit this week. He helped me with our garden this weekend, and yesterday he took Madeline to the park by himself!! It's so wonderful to see him enjoying life and able to do some things without being completely exhausted.

Thursday we will be back at Mayo to try to get to the bottom of exactly what the cause is and what the best treatment will be. We will meet with several doctors and are anticipating more testing.

We have a renewed hope, now that we've seen some improvement in just 6 days of prednisone. We aren't sure if that will be the long term treatment, but at least for now it's working!

Brent's working on some new pictures for the photo page here, so watch for those.

Heather

Friday, May 18, 2007 6:17 PM CDT

Well, new news might be good news!

I have had this underlining struggle for over a year that I have tried to explain over and over and over again to my family and doctors but no one could understand while so many other things were clouding their sight... now that much of the other things that have clouded this issue have been resolving now the doctors acted and did some more testing and found out clinically I really don't have any energy which I have been trying to explain for over a year now.

The reason is my adrenals have almost stopped working and my pituitary levels are low, so yesterday they ran another test and now I am waiting for what we can do about this issue... note they just got back to us a couple days ago and for now we are going to try 5mg prednisone a day to see if that helps and also move up my next appointment from June 13th to May 31st... so far I think its helping a little bit getting me from having to concentrate on breathing to not which is unbelieveable, I am sure to hear but so true. I remember many nights concentrating on breathing even in my sleep... hope this energy trend continues!

Hopefully next weekend we will have a more comprehensive plan... I really can't remember what it was like to have energy, I've just continued to push myself each day to get a drink of water or try to do some dishes and so on and so on! I have described things like its hard for me to get the energy just to smile.

I am glad and frustrated at the same time that we finally came to some understanding of this but just upset that I have had to fight this without any diagnosis for over a year.

Yes, I will update the pictures soon!

Friday, April 20, 2007 11:46 AM CDT

Monday, April 16, 2007 7:07 AM CDT

Brent was at Mayo on Thursday, and all reports were good. He won't go back now for another month!
We were able to enjoy the beautiful spring weather yesterday at the Minnesota Zoo, and it was so thrilling to see Brent carrying Madeline around, even on his shoulders.
I don't have time for much right now, but thanks for checking!
Heather

Saturday, March 24, 2007 10:32 PM CDT

It's been another long month without an update. For the most part, things have been similar to before. Brent is still trying to figure out how much activity his body can tolerate on a daily basis without overly exhausting himself. His GVHD is still present, and he is still very discouraged that things aren't getting better faster. He now has another respiratory infection of some sort, so he's on the heavy duty antibiotics again. Pray this clears up quickly and without further intervention beyond the Levaquin.

Living with long term illness is hard. We are learning more and more about the prospect of this going on for a while longer, and it is discouraging.

We try often to look at the positives -- his hip is so much better. He's been walking on the treadmill regularly for a couple of weeks now, and his stride has improved a lot. He is almost completely off the pain medications he's been on now for nearly two years.

Still, so many things are unanswered, and that leaves us feeling restless. Please pray for peace for us, for answers for our future, and ultimately healing and recovery for Brent.

I'll try to be more regular in our updates, even if things haven't changed much. Thanks for checking in!

Monday, February 19, 2007 11:57 AM CST

We know we haven't been heard from in awhile... it has been kind of a numbing month of changes and challenges: not all bad - not all good... I won’t bore everyone with all the details, but it has been a challenge for both Heather and I with implications we have had time now to realize that will effect us for possibly our life-time with big decisions to be made.

Heather started a new temporary part-time job at Olivet Baptist - a church we were part of in the past when we first met through the first years of marriage.
Heather has enjoyed the experience as the worship leader in Olivet’s contemporary second service... She has enjoyed all the positive comments from church members about how she has dove in and done a great job.

Now with my new right hip as of December 4th, I have been taking on a lot more responsibility taking care of Madeline, which has been both great and quite the challenge for me. I have been doing this while battling a major sinus infection. As my nurses at Mayo say, it’s for once a normal health issue! Of course, It hasn’t been fun though! I had totally plugged ears for over two weeks where I didn’t even want to talk on the phone, listen to the radio in the car or watch TV because it sounded so distorted. I have had to be on a long-term duration of heavy antibiotics that have put me on my back along with the sickness. I have finally changed my antibiotic to something less powerful three days ago and yesterday, Sunday, was my first pretty normal feeling day in over a month.

I have had to learn through all this to slow down on the days I feel better, so hopefully I won’t have so many valleys to go through. This is very hard for me to do because I am an adrenaline driven person that loves to accomplish a lot everyday. My goal is to slow down a bit during those good days and put myself in a better position to hopefully stay well and possibly go back to work part-time at some point in the next 6 months.

Thanks for all your support and prayers!

Friday, January 19, 2007 9:19 PM CST

Brent just got home from Mayo again -- his dad has taken him these last two times because his appointments have fallen on Thursdays where I have both MOPS and worship team rehearsal.

He threw his crutches in the garbage!!!! Dr. Lewellan looked at his x-rays and gave Brent his approval to walk and do anything else he's comfortable trying. He will have to pace himself since he hasn't used his leg muscles for a year and a half, but he is so excited to start the rehab process. We're not sure if he'll use "official" therapy or if he'll just do it on his own. Either way, it's very exciting!

He does have a pretty bad sinus infection right now, but he's on good drugs and they're helping already. He also has an infection in his eye, but he has antibiotic drops that should help.

Thanks for checking in -- we're so excited to be at this place. PRAISE GOD!!!

Heather

Monday, January 8, 2007 9:01 PM CST

Brent had a very positive trip to Mayo last Friday. All of his appointments showed improvement. His lung capacity has improved, his sleep study showed no problem, and his bloodwork showed no problems. He doesn't have a check on his hip until the 18th, but he's doing very well and having no pain.

He has been sleeping much better. Dr. Litzow cleared him to use a Neways melatonin supplement that greatly helps his sleep.

Things around here are feeling much more normal. Praise God, and please pray for this to continue!

I started at Olivet on Sunday. I'm really excited about this job, and I feel my first Sunday went well. I'm looking forward to learning a lot about worship leadership this winter.

That's all for tonight... Praise God for his provision!

Heather

Friday, December 29, 2006 12:43 AM CST

Belated Merry Christmas to you all. We're still not done celebrating yet, so it doesn't feel like Christmas is over around here. We had a nice time with Brent's family on both Christmas Eve and Christmas Day, and we're celebrating with my family over New Year's.

Brent is doing fairly well. We had a long day at Mayo last week, and he has some new pulmonary drugs that will hopefully improve his lung capacity. He goes back next week to see if there's any improvement. Mayo doctors say there likely wasn't pneumonia at all. They think he caught a virus a couple of months ago which has passed but activated GVHD in his lungs. The stress of undergoing surgery likely has made it hard for his body to catch up, in terms of the graft vs. host. His leg continues to be pain-free, and he's VERY eagerly anticipating being allowed to walk in a couple of weeks. He is having trouble sleeping -- not sure if it's excitement over his new leg, drug issues, or some other problem. He will have a sleep study done next week to see.

Praise God for a good Christmas!! Life around here is feeling relatively normal this week!! Praise God!

Heather

Tuesday, December 19, 2006 10:49 AM CST

Brent is better!!! He recovered very quickly overnight Sunday, and he continues to be feeling good. He did go to Madeline's program on Sunday night, and it was SOOOOOOOO cute to see all those kids up there. Madeline stood right by her friends Corene and Ava, and they sang their hearts out!

Madeline and I have colds now, so we're doing everything we can to make sure Brent doesn't get our germs...

We're so thankful for all your prayers and concern this week. Have a very Merry Christmas!

Heather

Saturday, December 16, 2006 9:12 PM CST

It's been a tough week at home. It started so well -- Brent surprised me by coming to church last Sunday morning, less than two days after being discharged from Mayo for hip surgery. He was there for my solo, "All is Well," and it gave me such a peace to know he was there. He was also there Sunday night for Grace's Christmas Celebration, which was amazing.

Monday he slept most of the day, but started to run a temp at night. Tuesday we called Mayo, and they advised us to go to ER here, not because he was in an emergent state, but because that's the easiest way to get testing done quickly. They did a CT of his chest and some blood work and found that he does have a small spot on his lung (pneumonia), but they didn't change any meds, because he was already on Levaquin, a very strong oral antibiotic. (Dr. Litzow had put him on Levaquin before his surgery when he was starting to have lung problems.) He also was told to start taking Tylenol for his fevers, which never got above 100 degrees, anyway.

By Friday he was feeling worse, but the cultures had come back showing nothing, so Litzow said to wait until Monday to see if he was improving at all.

Friday night he and Madeline went out to his parents so I could have a night with the girls and go to a rehearsal this morning.

This afternoon, I went up to Lee and Fern's when Brent called saying things were worse. We talked to Litzow, and he'd really like Brent to be in the hospital. Brent asked if he could have through tomorrow to see how things go, because Madeline has her first Sunday School Christmas Program tomorrow night at Grace, and Brent wants so badly to see her.

So, we're home, but Brent is not well. He's been running a temp all day today, despite the Tylenol. I'm hoping that the overnight goes okay and that he'll be able to be at Madeline's concert tomorrow night. He wants so badly to be there.

I have the Olivet concert in the morning -- I'm the stand-in for their director/pianist who is expecting twins soon.

The stress level is high here this week. We are hoping and praying so much for a healthy Christmas. Thankfully, we're not planning on traveling. We'll be with the Carlsons on Christmas Eve and Day, and my family will be celebrating New Year's together here in the Cities.

We covet your prayers in the hours and days ahead. Thanks for your faithfulness!

Heather

Friday, December 8, 2006 10:55 PM CST

Brent is home! His parents drove him home this evening, and now he's settled into the guest room where his hospital bed was waiting for him. He'll stay there on the main floor for a while before tackling the stairs to our bedroom upstairs. The adjustable bed is really helpful for him now, too. Lee and Fern really bailed me out this week. If they hadn't been in Rochester with Brent, things would have been even more of a mess than they were. Thankfully, the week is over, Brent's home, and he's doing well (his lungs and rash are much better, he's walking well with crutches, and the pain is controlled.)

Madeline is better today. She's still not 100% herself, but she has been much more active, she's eating, and she's not running a temp anymore. Most importantly, NO MORE PUKING!! That's the highlight for me!

I started to decorate for Christmas today. It feels so good to get out my favorite things that hold so many memories of Christmas past. I also bought some new tree ornaments today -- for the first time ever we're going to have a tree in our living room that matches! I'm really excited, and I've scattered all our traditional ornaments around the house in non-traditional ways. I put our simple creche on the end table in the living room and another nativity on our dining room table. I love having those reminders of what this season is all about in prominent places in our home.

Pray for a smooth weekend for us. Grace Church Roseville has our Christmas concert this Sunday night at 7pm, and I'm also slotted to sing a solo Sunday morning. Call me crazy, but music is what I'm made of, and it's a release for me more than an additional stress. Pray that Brent will be able to attend the concert and that he'll tolerate some time home alone without any problems as I have rehearsal tomorrow morning and church Sunday morning.

Thanks for hanging in there with us this week. My friends have made things so much easier for me, too. I have such amazing girlfriends! They clean my house, bring me food when we're sick, watch Madeline so I can still be musical... Thanks guys! I love you all!

I probably won't update every day now, but keep checking -- I'll write when there's something worth writing...

God bless you all,
Heather, Brent and Madeline

Thursday, December 7, 2006 5:53 PM CST

The flu did hit... Madeline woke me by throwing up on me at 5 this morning. This is the first chance I've had to get to the computer, as I've been mother in the fullest sense of the word today. She has had her cute moments, still. She said early this morning, "I want to call my daddy and tell him I'm throw-uping."

SO... pray that we didn't infect Brent yesterday (apparently I did have a slight case of the flu on Tuesday.) Pray that I don't get sick again. Pray that we didn't infect others at church last night.

This is the THIRD time that either Madeline or I has had the stomach flu, and every single time it's been while Brent is in the hospital. (Once for chemo before transplant, last year during the first hip surgery, and now.) I guess he's being protected in that sense!

Now about Brent: his pain is much better. His lungs also seem to be generally better, although not completely better. He has a rash all over his body that they are watching. Part of it is being attributed to the IV antibiotics, but there's a portion on his left leg and foot that looks different, and they're not sure what that is, so they're watching. It doesn't look like GVH.

They haven't talked specifically about discharge. Tomorrow is the date we were originally told, and we haven't been told anything different. Brent's physical therapy in the hospital is going extremely well.

Please pray extra hard that Madeline recovers quickly. She's been sleeping much of the day today and hasn't eaten anything successfully -- last time she threw up she said, "That was my gatorade..." Correct.

The implications of her being sick are not good -- first, Brent's coming home could be delayed and/or he could be exposed to this yucky stuff again. Secondly, I am the pianist for our church Christmas concert this Sunday night. It would throw quite a wrench in things if I were unable to be there. (Don't worry, Grace musicians -- unless I'm violently ill myself, I'll make a way to be there.) Saturday morning is our dress rehearsal, as well.

That's probably enough detail for all of you. You mothers out there can fill in all the blanks and imagine what my day has been like!

Thanks for all your prayers. Today is one of those days when it seems they're not being heard correctly. We know they are, but it just doesn't make sense. Pray for assurance and peace for us -- especially Brent, as he still sits in the hospital, missing home and family. His parents are still with him, but he's cautious about being too close to them, since they spent the day with Madeline on Tuesday, and he's afraid they're the next to get sick...

Heather

*** In case you're wondering where this flu came from, our hosts in Rochester got sick during the night our first night there, but concluded it was food poisoning since it was sudden and they got sick at the same time. Once others around them started getting ill, we figured out it was, indeed, the flu... Apparently they were at a family event last weekend and now every person that attended that party has gotten sick, as well as others they came in contact with...

Wednesday, December 6, 2006 9:44 AM CST

Yesterday was a hard day for all of us. Brent started to experience a lot more pain. They had to remove the nerve block that had been in his back (sort of like a epidural -- it blocked the feeling to his right leg) because his blood got too thin to have the needle in his back. After trying oral meds overnight, they've now given him a PCA so he can control his own pain medication.

In addition to his leg pain, he's feeling really tight in his lungs and chest and starting to worry about what that may mean.

I had a scare yesterday, thinking I had the flu. Brent's parents took Madeline to their hotel and I went to bed immediately, and I woke up at suppertime feeling much better.

Neither Madeline or I were able to see Brent yesterday, and that's always hard. Today we'll be there for a short time, and then I'm going home for about 24 hours for rehearsals for Christmas concerts.

Please continue to pray for a speedy recovery. Brent was up walking with a walker yesterday and said it was SO much easier than last year when he had surgery. Pray that his recovery continues and that his pain is controlled and quickly diminished. Pray for peace for him, as lying in a hospital bed is very lonely for him.

Thank you for all your encouraging messages. Please keep them coming!

Heather

Monday, December 4, 2006 6:47 PM CST

We are so thankful! Brent is awake (for the most part!), he feels good, and the surgeons have been around to tell us that things went really well. They are satisfied with how the hip turned out and how he handled the surgery otherwise. His lungs were clear, anesthesia went well, etc.

It's been a long day -- I know we'll all sleep well tonight, especially since we feel such relief that this surgery is finally done! Madeline and I slept 3 hours in a hospital lounge this afternoon. The cleaning lady brought us a warm blanket, turned out all the lights and shut the door, and thankfully no one disturbed us!

We'll learn more about recovery as the week goes on. What we know now is that he needs to REALLY take it easy for 6-8 weeks.

I'll do my best to update each day this week. Thanks so much for your continued prayers. God is watching out for us...

Heather

Monday, December 4, 2006 6:47 PM CST

Monday, December 4, 2006 11:10 AM CST

11:10 AM
The doctor just called me and said everything went well in surgery. They're finishing up with the wound closure and then they'll do some x-rays before he goes to recovery. Later today the surgeon will come around to show us the x-rays so we can see how things look now.
There didn't appear to be any infection or other problems.
Praise God!!

10:43 AM
Brent went into surgery at 9:30 this morning. We're told they'll update us soon with the progress of the surgery.

Heather

Wednesday, November 29, 2006 9:29 PM CST

Alright -- here's the update I know you've been waiting for. Brace yourselves: There was yet ANOTHER mistake, and Brent's surgery is not tomorrow. Somehow, orthopedic scheduling confirmed with both Dr. Litzow and me that Brent's surgery was the 30th, yet his surgeon is out of town tomorrow, and Brent's surgery has been on the books for Monday, Dec. 4 for several weeks.

Needless to say, we were really shocked when we met with the surgeon today and he came in the room saying, "So... Monday's the big day!" We looked at each other, really confused, and stammered some sort of dumb question, "What's on Monday?" He answered, equally as confused, "your surgery!" We let him know that all along we had thought the surgery was Thursday, and that Monday the 4th had never been mentioned to us.

Brent expressed to the surgeon his full confidence in him and his surgical team, but told him that we're very disappointed in the scheduling department and their continual mistakes with Brent's case. Dr. Lewellan, the surgeon, was very apologetic, and we also met with a supervisor to the schedulers. Hopefully some action can be taken in her department. (The mistakes have been narrowed down to one particular employee.)

Yes, I know you're thinking that maybe this is for the best, considering Brent's lung condition the past few days. And it's only 5 days' difference. We have fully accepted that fact, but the logistics remain ridiculously confusing, overwhelming, and emotionally exhausting. Again, we rearrange schedules to fit around a promised surgery date. This time, we're getting closer to Christmas, and I will run into conflicts with Christmas rehearsals for programs and gigs I have as a pianist. We'll make it work, and Brent is fully supportive of me continuing with my Christmas plans. But we were planning for surgery to be tomorrow! We had our home prepared to be vacant for a week; our car packed to the brim with winter clothes, medical equipment, and toys; our friends in Rochester had our bed made and my key waiting... and now we're home again, only to repeat this process on Sunday.

Like I said, it's a logistical nightmare. And it's embarrassing for all of us -- our whole families -- to have to repeatedly explain these situations to everyone around us. It's exhausting and humiliating at the same time to constantly be making excuses for the mistakes that keep happening. We feel somewhat attacked -- we've been responsible through this -- checking and double checking to make sure things are as we believe they are, only to find out they're not!

Okay -- enough ranting for now. Brent's chest x-ray looked clear, and his symptoms are improving today, so unless there's a change for the worse, surgery on Monday will not be a problem. So we brought Madeline home kicking and screaming (literally) because she wanted to stay at Baby Jay's house (where we'll be staying when surgery does happen).

We just bought tickets for the Michael W. Smith Christmas show in St. Paul on Saturday, and I plan to take Madeline to the Mall of America tomorrow to see the huge gingerbread house.

Please pray for a smooth weekend and ultimately for success in Monday's surgery.

Heather

Tuesday, November 28, 2006 4:36 PM CST

Please pray extra hard as scheduled surgery is approaching in two days. Brent has been sick with an upper-respiratory "thing" for a few days, and today he's particularly sick -- so sick they did some chest x-rays here in Mpls. this afternoon. We're waiting to hear from Dr. Litzow to see what the results are, and that will set the course for the rest of the week.

I'll do my best to keep you posted...

Heather

Wednesday, November 22, 2006 2:35 PM CST

Brent got two deer on Monday!! He shot the deer in his parents' back yard with only a few minutes of light left in the day. We're headed up to his friend Kelly's place to butcher them tonight before we go to ND for Thanksgiving.

I am NOT going to post any pictures. I'll let Brent do that if he wants, but we'll make sure they're family-friendly... some of them are gorier than I care to look at!

Everything is on track for Brent's surgery. He's doing pretty well these days, and we're planning to go to Rochester next Tuesday night. Surgery work-up will be all-day Wednesday, and surgery Thursday sometime.

I have accepted an interim position as worship leader at Olivet Baptist Church! I'm excited to go back to the church I worked for a while after college. I will be filling in for a maternity leave -- probably about 12 weeks, starting Jan. 4. After that, we're planning to return to our current church, Grace Church Roseville.

Have a Happy Thanksgiving, everyone!

Heather, Brent, and Madeline

Thursday, November 9, 2006 4:56 PM CST

Brent is having surgery in 21 days!! Please pray that this date of November 30 will work out. His health is stable, so we're praying he'll stay that way so the surgery will be possible. He should have plenty of time to recover in order to enjoy Christmas, as well.

That's all for today...

Heather

Saturday, November 4, 2006 10:56 PM CST

What a week -- thanks for all the birthday wishes! Brent and I were able to go out on Sunday night to celebrate my birthday. Three college friends took me out on Monday night, my mom came for a few days, Brent's family took me out on Friday morning, and then what I thought was going to be dinner out with two MOPS friends, turned out to be a surprise dinner with a couple extra MOPS girls. So much fun! Thank you all for the parties, cards, emails, etc. It was a great week.

We had a fun Halloween, too. My friend Jenny's surprise 30th birthday party was that night, and I took Madeline and Corene around the neighborhood trick-or-treating. They were ADORABLE matching chickens! It was actually an accident that they matched, but it was so fun!

Brent has been feeling pretty decent this week, and he's actually up at the cabin for the weekend with his dad -- they're trying to get deer. I talked to him tonight, and so far he hadn't seen anything.

Monday we go to Mayo, and I think we'll be scheduling surgery for sometime around the New Year, unless there is a cancellation just after Thanksgiving.

I'm starting to look into different church music jobs in the area. I actually have more than a couple possibilities, so please pray for direction for me in my decision.

Bedtime!

Heather

Friday, October 27, 2006 11:52 AM CDT

Brent has been steadily improving all week!!! This morning when he woke up he said that he actually felt hungry. That is a total miracle!

Thank you for all the prayers, and please keep them coming. We are really hoping that his energy can be completely restored and that he can have surgery relatively soon.

We have new pictures on the picture page... check them out!

Heather

Tuesday, October 24, 2006 10:19 PM CDT

Yesterday at Mayo was just as we expected it to be. Brent started taking a new med -- a steroid that only affects the GI tract but doesn't absorb into the rest of the body. He also got a liter of fluids because his blood pressure was low again.

The hope is that this new medication will reduce his nausea to the point where he doesn't become dehydrated. The dehydration is what causes his low blood pressure readings, too.

They will reschedule a surgery date once Brent's stomach gets better.

However, Brent isn't feeling any better yet, and he's pretty discouraged and frustrated. He hasn't been eating or drinking very well. They say the drugs take a few days to take effect, so hopefully by Thursday or Friday we'll see some significant improvement.

How am I? My emotional state is usually directly related to Brent's physical condition. So, this has been a hard month for me. I've had a lot of fears and worries. The last week has been exceptionally hard, but now that there's hopefully a solution on the horizon, I'm optimistic. Still, though, seeing him so miserable is still horribly hard. Finding the balance between caring for him and maintaining "normal" for myself and Madeline is getting increasingly difficult. I keep scrapbooking, working out, and maintaining girl-friendships to keep myself sane. I've also been getting more involved at our church, and that has given me an additional outlet. Every once in a while, I just go hold my new niece and that gives me a moment of peace with a newborn where all the heaviness of my daily life can fade away.

We're approaching four years since Brent's original diagnosis. That is a very long time to live like we've lived.

Thanks for all your guestbook entries. Keep them coming. It's really nice to open up the page and see notes from friends. And I'm really sorry there haven't been new pictures on here for months. Brent's the one that knows how to do the big collages.... I'll see if he can whip something up one of these days.

Thanks again to all of you for all your prayers and support in so many ways.

Heather, Brent, and Madeline

Sunday, October 22, 2006 8:47 PM CDT

Lots of changes today:

#1 - Brent is still really sick -- he even threw up this morning.

#2 - Dr. Litzow and Brent decided that the best decision is to cancel the surgery.

#3 - Dr. Litzow is still relatively confident that Brent does have GVHD in his gut, and the plan is to start treating tomorrow.

That's the short version, but here's more details.

Since coming home, Brent's symptoms haven't been any better, in fact, this morning he was much worse. The anti-nausea meds aren't working, which is also an indicator of GVHD.

Although completely unrelated to his hip problems, being this sick is not a good way to go into major surgery, like hip replacement. They decided that his GI symptoms need to be under control before proceeding with the surgery.

We weren't given complete information at Brent's discharge. Not all of the biopsy results were back at that time, and we understood that they were. So, already one test has shown that there is probably some degree of GVHD. At least one more test is still pending. Dr. Litzow also said today that he has had patients in the past who haven't had any positive biopsy results, yet they respond to treatment for GVHD of the gut.

So, what's the plan? Brent is going down tomorrow to see Dr. Litzow, the eye doctor, and have some labs done. He will also start the drug for GVHD in his gut, and hopefully this will turn things around for him.

We are really disappointed that the surgery won't be happening this week, yet I think it's the best decision for now. Hopefully Brent can feel better soon and enjoy life more while he waits for his rescheduled surgery. Today he started talking again about maybe being able to hunt this fall.

Thanks for checking in so faithfully this week. Keep checking - I'm sure there will be more info after tomorrow's visit to Mayo.

Heather

Saturday, October 21, 2006 8:26 PM CDT

Brent feels really punk again. We're really feeling that they missed something in the testing, or didn't test for the right things. Unless he gets worse, we're going to hold out until Monday when we have appointments scheduled with all his docs.

I have my own suspicions about liver problems, based on my online research, so we'll certainly ask about that on Monday.

Heather

Friday, October 20, 2006 9:11 PM CDT

Finally, some good news! We were sent home this afternoon because they found nothing wrong with Brent, except for a bad case of dehydration. He was on IV fluids for about 48 hours, gained about 8 pounds, and his kidneys are functioning better.

We're home for the weekend because they felt there was no reason to keep him, and they want to make sure he stays hydrated even without the IV fluids. The theory is that his body was so behind that no amount of drinking fluids was catching him up. Dehydration can even cause nausea, or it's possible that he did have a bug at one point. Who knows...

We're going back on Sunday night for prep work on Monday and the surgery is still planned for Tuesday. Praise God!

Another huge praise is that Madeline and I stayed last night with my old college friends, Josh and Jenny Mulvihill, and we'll stay there next week, as well. Madeline didn't want to come home tonight -- she cried because she wanted to stay at their house to see their baby! Being in Rochester is so much more pleasant when we have a home to stay in.

I have so many wonderful friends who helped me get ready to leave quickly yesterday, are planning to clean my house while we're gone, and offer constant support. I love you guys!!

Pray for a good weekend home together as a family and a safe surgery next week.

Thanks for all the messages. Keep in touch next week. I'm sure there will be lots to report.

Heather

Friday, October 20, 2006 2:36 PM CDT

We're still waiting on test results -- Brent had an endoscopy yesterday where they looked into and took biopsies from his stomach.

It's possible that we may go home tonight, but we're not sure.

Surgery is still in the question...

Heather

Wednesday, October 18, 2006 12:29 AM CDT

I promised a quick update, didn't I? We talked to Brent's doctor this morning (while he was walking through the airport and boarding a plane), and he advised that Brent be admitted for at least 4-5 days to do more extensive testing of his kidneys and stomach.

Fern will take Brent to Mayo this afternoon and Madeline and I will come down later tomorrow.

I feel a lot of apprehension and fear right now, and I know Brent does too. At this point, we're still unsure about the possibility of surgery on Tuesday.

Please pray for wisdom and clarity for the doctors, comfort and peace for Brent, and the right amount of understanding for Madeline.

I'll be updating throughout the week, I'm sure.

Thank you for your continued prayers....

Heather

Tuesday, October 17, 2006 9:35 PM CDT

Another day of drama...

Brent's dad took him to an appointment at Park Nicollet this afternoon to adjust his Coumadin dose leading up to surgery. In the appointment, Brent had very low blood pressure again, so he was sent to ER. He received fluids and they did more bloodwork. They found that his creatinine level (which shows kidney function) is very elevated again at 2.6, so we will likely be going to Mayo to really dig into the kidney issue in the next day or two.

He is coming home tonight, but it sounds like we'll be in Mayo's care shortly.

Please pray for resolve. It's very frustrating to see him so sick with no clear answers.

I'm home with Madeline today, so she's oblivious to how sick Daddy is this time.

Pray for wisdom for me as I never know what to tell her. Today her friend Corene asked why Brent has to have his blood checked all the time. I told the girls that Brent's blood is what is sick in his body, and the doctors have to check it a lot. I guess that's a good version to tell 3 and 4 year olds...

Lastly tonight, if you read this before bed, pray for sound sleep for me. It's so hard to sleep when Brent's so sick.

Heather

Sunday, October 15, 2006 10:41 PM CDT

Brent talked to Dr. Litzow today, and they decided to hold off on the endoscopy and treat aggressively this week, assuming it is GVHD in his stomach. Brent's blood is too thin to do the scope right now, so by the time he held off on blood-thinners long enough to do the scope, it may end up delaying surgery.

If things haven't resolved in a couple of days by using a little more cyclosporin, he'll have no choice but to go on prednisone in order to settle down the GVHD before surgery.

Prednisone is not a long term solution for Brent, since that's likely what caused his hip to deteriorate in the first place, but hopefully it will make the surgery possible, at least, so hopefully he can recover in that aspect.

Thanks for all your continued prayers. We definitely are encouraged by the support and prayers of all those around us.

Heather

Saturday, October 14, 2006 6:35 PM CDT

Brent is continuing to feel absolutely miserable with nausea. We've been talking to Dr. Litzow on almost a daily basis, and the plan is to go to Mayo either Monday or Tuesday for an endoscopy to look into his stomach.

We'll have to wait until early Monday morning to know when he will be able to get in for the test, so please pray that the test can be done Monday and that it will show clear answers to what is causing Brent's nausea.

Dr. Litzow and his team are speculating that it's GVHD, but they need to see in order to treat appropriately.

Brent is scared. With the surgery scheduled for 10 days from now, he's afraid that life will be really hard for the next several weeks. With all the unknowns right now, we're not even sure if surgery will happen on the 24th. Please also pray for peace.

Pray for Madeline. The older she gets, the more aware she is, and I know she's having a hard time with Daddy being so sick right now. The plan is that one of Brent's parents will take him to Rochester next week so I can stay here with Madeline. Our poor baby is so sad that her Daddy is sick....

Heather

Sunday, October 8, 2006 10:43 PM CDT

We had an afternoon in the emergency room at Methodist Hospital in St. Louis Park today. When I came home from church, Brent was very light-headed, nauseous, and short of breath. He took his blood pressure and it was quite low -- the readings we got varied from 80/50 to 110/60 -- they kept increasing as our nerves increased! I called Dr. Litzow directly on his cell phone (how often does the average person do that?) and asked him what to do. He advised going to the ER here in Mpls. to have them run tests and give fluids.

After getting fluids, Brent felt much better. By then, the bloodwork and CT scan came back, showing there is nothing visibly of concern in his kidneys or abdomen, and the creatinine levels in his blood have dropped slightly since Thursday's high reading. The ER doctor called Litzow, and they decided to send us home. Litzow will call us in a couple of days to check up.

However, Brent's kidneys are still of concern. He has dropped some drugs since Thursday, including some necessary ones, in an attempt to give his kidneys a break. Please pray for his entire body as he tries to balance his infection risk/kidney function/graft vs. host, all while preparing for surgery in two weeks.

At least we saw a good ending to a Vikings game, Madeline got to play with her friends, Corene and Ava, this afternoon, and Lee, Brent, and I had a few good laughs even while in the ER today.

Madeline came home so tired she went straight to bed (after a time-out for disobedience.) As she was falling asleep, she looked over her shoulder at me and said, "I DID obey at Jenny's house..."

Heather

Saturday, October 7, 2006 8:18 PM CDT

Please pray for Brent -- he is having some kidney problems. His creatinine levels are elevated (the way they measure kidney function in his bloodwork), and his doctor is quite concerned. He's also showing some symptoms of kidney problems, including lack of hunger and thirst, back pain, and nausea. If the condition doesn't improve, there is a possibility surgery may be delayed, according to Dr. Litzow.
Brent will have blood tests here in Mpls. on Monday, and the results will be faxed to Mayo for review, and they will decide what to do from there.
This is particularly discouraging since we had such a great weekend last weekend with Madeline's birthday, our anniversary, and my class reunion. For several days in a row, Brent felt the best he has in months. Please pray for a return of that feeling!
I'll update on Monday.

Heather

Tuesday, September 19, 2006 6:34 PM CDT

We had a great time up north at the cabin last weekend. Madeline brought a friend and they had a lot of fun playing in the sand box, riding in the boat and driving us nuts! I have been fighting worse symptoms of Graft vs. Host disease with my eye's. This all started last weekend and it hasn't gotten any better yet. Feels like I have a vinegar solution in my eyes all the time so my only relief is to keep my eye's closed. Otherwise, I have been doing pretty well.

We go to Mayo again on Friday and we will SEE what the eye doctor says about my situation. So far no permanent damage and I truly hope and pray it stays that way. Rash has been better and also my mouth seems to be healed up so that is positive. But for each positive I seem to get a new negative like my eye situation now.

Madeline and Heather are doing great as usual. Madeline's 3rd birthday is coming up on October 1st along with Heather's on October 29th. Also our anniversary is September 30th.

I hope to be up for hunting even with my bad hip since my surgery date got screwed up. I now have a muzzleloader, crossbow, bow, and shotgun AND an all season deer license. I am truly ready to hunt if I feel good until the end of December. So if you have a place to hunt I would be glad to be your wing man!

Brent and family : 0 )

Thursday, August 31, 2006 9:57 AM CDT

Last week we learned there had been a scheduling mix-up with Brent' surgery, so it's been postponed with no medical reason to do so. Needless to say, we're frustrated, but we're trying to make the most of the fall while we wait for Oct. 24 to get here.

We'll be at the cabin next week for the first time in two years, which wouldn't have happened if surgery had been next week.

My brother and his wife had their baby on the 18th -- Cora Elizabeth Hermunslie. Madeline loves her new baby cousin!

That's all for now -- we're off to a birthday party.

Heather

Thursday, August 17, 2006 5:37 PM CDT

We are now assured of at least having my hip surgery on September 6th with hopefully only the minimal stay of five days in Rochester. I am also on a waiting list for any cancellations before then, so we will keep you updated if that happens. We will be heading down on the 4th to prepare for the great event!

Right now, I finally got Heather and Madeline's cold "Yahoo" and the lovely Dr. Litzow upped my antibiotic because I was having yellowish yummy stuff coming out of my nose and lungs. After five days of this I think things are clearing up but those great drugs sure make me feel yucky!
: 0 (

Madeline and Heather are healed for the most part but Madeline is still coughing!

So we are busy these days trying to make organization of our house possible, which we know will never happen but we're trying! If we can get from disaster to just unorganized I will be much happier!
: 0 |

Meanwhile we wait for a new cousin for Madeline. Heather's brother Ryan and sister-in-law Laura are due as of a few days ago and will be induced next Wednesday the 23rd if said little one is stubborn!
@ ( : 0< )

We will try and update the pictures soon including of course the new little cousin!

Brent

Thursday, August 3, 2006 10:58 PM CDT

Today I had new travelers with me for the trek to Rochester. Erin Dailey and her son Jack. Heather ended up getting a chance to go early to my friend Kelly's and Carrie's cabin in Hayward Wisconsin for some time away with Madeline.

The Rochester visit went well... all the GVH disease symptoms seem to be lessening everyday and Dr. Litzow decided to try lowering me on the anti-rejection meds again. Pray that my body holds strong in the initial reduction of these meds in these next couple weeks.

Also with the mouth sores highly reduced I have had some new sores that don't look like GVH start and have been making me really tired but some new antiviral ointment seems to be reducing these sores slowly. Hopefully I am on the mend moving towards my surgery date. Preliminary surgery date to replace my hip is September 6th and I'll go back to Mayo in two weeks for an appointment to make sure everything is a go for surgery.

The recovery time should be much faster this time around without dealing with a major infection and six weeks of drip antibiotics like last time in February. Who knows I might even walk out of the hospital this time around. Pray that all goes well in preparation, the actual surgery and recovery in the next two months.

I really hope to be ready to do something fun by the end of September like go hunting again. Being able to walk after 1 year and 1 month on crutches will really lift my spirits that have been pretty sour these past three months battling these GVH symptoms.

Pray for our family that has been through so much and are at the end of our ropes emotionally trying to keep positive without much positives surrounding us.

Brent

Saturday, July 15, 2006 11:27 PM CDT

Brent is finally improving!! He is responding to the increase in meds for the GVHD, and the symptoms seem to be subsiding. He's having some side effects of the meds, but generally feels better than a few weeks ago.

We went to a pool party today at Dr. Litzow's house. Somehow at Brent's appointment yesterday, the subject came up, and we ended up invited. So we drove down to Rochester for the day, and we had a blast! We brought Madeline's friend, Jeneva Dykstra, with us, and the two of them had so much fun in the water, they wore themselves out and slept the whole way home. We are so thankful for such a wonderful doctor that he would invite us to his home. He's amazing, as is his whole staff. We are very blessed...

Surgery is still on hold until the GVHD improves more. The tentative plan is still to do it in August sometime.

Heather

Saturday, July 1, 2006 0:25 AM CDT

Things for me are going pretty ugly still. We happily tried to get me to do something other then be sick and groan and so I went Turkey hunting with a friend 6 weeks ago and we went to Hawaii three weeks ago. Both events pretty much did me in which is really discouraging for us. I am just completely lacking of any social life even with Heather and Madeline which is also upsetting. I thought trying to have fun would help and it only hurt me so that’s not all fun! Basically my GVH disease has thrown me for a loop. I am dealing with five symptoms not each being bad but to together they make a certain misery for me. Mayo confirmed the last two days in Rochester that this is all GVH and is affecting my eyes now, intestinal tract, skin rash, mouth soars and lungs are at 50% of function. I actually have a positive attitude after todays news because we are going to switch some things around and these changes should be effective. I’ll have to wait maybe a couple weeks to see how things are doing. If this doesn’t work, well, they have another good option that might just knock it all out for good which is arterial florysis where they take out my blood and spin out the lymphocytes and treat them with UV lights and replace them back into my system. Its just more invasive so they want to try some other treatment changes first.

All in all I am alright and able to function pretty well and I am use to this misery blessing if you can call it that. There are always positives along the way which I grasp on to as much as I can.

I will probably be getting my hip replaced in August sometime if we are successful with these news changes in this next couple weeks.

One positive is finding a essential oils recipe in my Neways International a company I represent which has a strong case or ultimate cause in ridding this world of cancers and disease through safe personal care products.

The story goes: I have horrible mouth soars that inflame and swell my mouth something fearse and I was up one night and sitting in the bathroom and thought I am going to read that Neways essential oils book and see if there is anything to these oils. I haven't put a whole lot of weight in oils in the past but really haven't tested them. So I read how there are many oils that kill bacteria and fungus so I looked further and there was a recipe for mouth soars, wow, okay I'll do anything to not scream each time I eat. I mixed it up and 60 seconds later spit it out, bahtah bing, most all my mouth swelling was probably 90% gone. I couldn't believe it asking myself "what is this stuff". So I thought why not try swallowing it, what do I have to lose and the next day I had already felt better and the last five days my energy has been coming back and my mouth has gottan better. I doubt its going to heal my GVH disease all in all but it sure helped. I went from feeling like I couldn't even crutch across the room to crutching without much problem with energy issues. I sure hope its not all in my head!

Yes, this has become a small little advertisement so if health interests you checkout our web site and email us with any of your questions, you can sign up for free and all order off our site are at wholesale pricing(same price that we get):
http://www.ineways.com/worldwide

Thanks for following our story and supporting us in so many ways!

I have a good appetite due to the lovely drugs and will never turn down some good food! : 0) Have to stay away from anything spicy though because of the mouth soars.

Brent

Monday, June 26, 2006 11:16 PM CDT

Brent's condition seems to be getting worse again. I hate that I have to write like this again! Please pray for Brent this week. We're in constant contact with his doctors, and we go to Rochester on Thursday.

Dr. Litzow is ordering a bunch of extra tests for Thursday when we're at Mayo, in hopes that they can rule out and/or nail down what is and isn't going on.

His symptoms include mouth sores, diarrhea, eye drainage and fogginess, as well as some shortness of breath. He's been sleeping a lot again, also.

Pray for his spirit. He is so discouraged that he has gotten sick after he was finally able to get out and do "normal" things like hunt and go on vacation. He thought those challenges had gotten him out of a slump, and in many ways they did. But his body apparently couldn't handle the activity, and it's having a hard time recovering.

Pray also for direction in the timing of his hip surgery. He was initially thinking he'd like to wait until the end of the summer to do it. But then he thought he'd rather just get it over with since he's not really able to be out enjoying the summer anyway. But having lurking sickness, whatever it is, won't allow a surgery at this point. Dr. Lewellan, his surgeon, has said that it's up to Brent and Dr. Litzow to decide the time, and they only need a couple of weeks notice in orthopedics.

it goes without saying that Brent is again, very sick of being sick. We are so thankful for the good weeks he's had, but having him feel icky again is very hard.

I am constantly reminded that we're not alone in this, nor are we the only ones dealing with difficult issues. But being in the midst of it still isn't easy...

Thank you all for continuing to check in with us...

Love,
Heather, Brent and Madeline

Wednesday, June 21, 2006 10:21 PM CDT

We are now all home again -- all three of us home in the same house! Alaska was amazing, and it seems Brent and Madeline also had a great time with Brent's parents, Becky's family, and Ryan and Laura. I still keep hearing about things they did while I was gone -- Madeline's quite verbal now.

The Team in Training experience was again, like both of our previous experiences, very motivating, inspiring, and gratifying. Our Minnesota Team raised over $160,000 towards research and development of leukemia and lymphoma treatments, as well as patient financial aid. One specific area that Team in Training's fundraising has affected is the development of the drug Gleevac for chronic leukemia patients. This drug is relatively new, but has already had fantastic results with many patients. This doesn't affect Brent's treatment course at all -- he is in remission from an Acute Leukemia, not Chronic. But my Grandma Hermunslie lived with chronic leukemia for many years before she lost her battle. All of these new developments lead to lives saved! Thank you again to all of you who supported me in one way or another. I hope to participate again some year with this awesome organization. I've made great friends and met so many wonderful people through my involvement with TNT.

Brent continues to have lots of problems with his mouth. He and Dr. Litzow are trying different combinations of drugs to try to help the sensitivity and pain in his mouth and to heal the open sores. So far they haven't found the solution, but things seem to be generally improving, although very slowly.

Brent is also having problems with his eyes -- it seems to be allergy-related, but it's getting worse when the rest of us are getting relief from our allergies. Dr. Litzow is making an appointment for him to see an opthamologist just to make sure there's nothing extra going on, in terms of GVH or anything else.

We've been invited to another fundraising event of the Leukemia and Lymphoma Society tomorrow night. Brent's going to wear his suit for the first time in years, and I'm digging out an old formal gown!! We're very excited for a fancy night out with new friends we've met through TNT.

I know we still haven't updated photos, but that is in the plan. We literally have hundreds to sort through after all our travels this month. Keep checking back!

We're back to Mayo next week.

Heather

Tuesday, June 13, 2006 10:51 PM CDT

This will be a quick one -- I leave for Alaska in just a few hours!!

Brent turned 35 on Sunday. We had his family here and ate our Hawaiian fish and Minnesota wild turkey (and the cake that Madeline decorated.)

Brent has had a hard time recovering from our trip to Maui. Lots of things add to the problem: jet lag, GVH in his mouth/stomach/gut, a small flu bug we both had last week, and horrible allergies.

His biggest GVH issue right now is mouth sores. In the past couple of days he's developed a few that have made eating very painful. Dr. Litzow is checking into some possible medication changes and we're waiting to see if an increase in his current meds helps the problem.

I took Madeline to Lee and Fern's tonight. She got so excited packing her suitcase that she couldn't wait until morning to go. Brent will go up there for the weekend, as well, but he's still here at home tonight.

The race is Saturday morning at 9:00, Alaska time. That's 1:00 pm here in Minnesota....

Heather

Tuesday, June 6, 2006 9:31 AM CDT

Hawaii... WOW! Thanks for all your prayers -- it was a wonderful trip. We got to experience so much in just a week, and Brent's energy held up very well. He had a couple of days where he had to lay low, but for the most part, he was really able to enjoy himself.

One of the highlights for us was a private fishing charter we took with our friends Carrie and Jeff (the ones who got married there) and Jeff's brother, Jeremy. Between the five of us, we caught seven huge fish -- mahimahi and ono. Jeff and I (Heather) were the lucky ones to catch two each, and I managed to catch the largest one of the bunch! We also spotted a pod of dolphins on our trip. It was awesome to see them in their natural environment.

The wedding was gorgeous! They got married right on the ocean, in the yard of an oceanside home. There were 11 guests there, and the small setting was really spectacular.

We have some amazing photos -- we'll work on getting them posted soon.

Madeline had a great week at Grandma's. She came talking more than ever!

Heather

Wednesday, May 24, 2006 8:40 PM CDT

We're off to Hawaii in the morning!! This is one vacation that's been a long time coming, that's for sure. Brent's been feeling really quite good, so we're optimistic about our time in the Aloha State. He's setting up a fishing trip with some of the guys there, and I'm excited about the beach!

Madeline's going to Grandma Betty and Grandpa Eldon's. We were talking about it today, and she told me that she's going to eat pizza while she's there. I asked her what else she'd eat, and she said, "nothing!"

We'll be back on Friday, June 2. Pray for safe travel and a really good relaxing time for all!

Heather

Monday, May 15, 2006 9:57 PM CDT

Brent and his long-time friend, Kelly, had a successful turkey hunting trip this weekend! Kelly and his wife and baby daughter came with us to my parents' for the weekend and the guys spent much of the time in the woods and along the Red River, hunting for wild turkeys.

Madeline was very excited about going to Grandma's, and when we turned off the Rogers exit for a stop at Cabela's on the way, she was a little perturbed and said, "This is NOT my Grandma Betty's!"

They've been planning this trip (and hoping Brent would be well enough to make it) for several months, so we were all so excited that not only did they get to hunt -- they each got a bird of their own.

Sunday morning was their last chance, and after being out for a couple early morning hours already, Brent said he told God that he really wanted to go to church, so they'd have to see some turkeys first! Not too long after, he shot his turkey, and they walked into church just a few minutes late, in time to hear the new pastor preach!

Brent got really tired out from the weekend, but he says it was all worth it. We go to Mayo this week for a day and a half. We'll see the orthopedist and Dr. Litzow, as well as some other routine stuff. I guess they'll see what kind of damage was done... It was one of his nurses, Bob, who told him about Spring Turkey Hunting!!

The only real concern right now is some GVH in his mouth and GI tract. He has mouth sores so bad he's having a hard time eating. Hopefully they can get this under control quickly. He has been using a steroid mouthwash that seems to be helping some. Also, he swishes with a numbing solution before eating.

He's started outpatient physical therapy at the Institute for Athletic Medicine in Robbinsdale. He continues to gain strength in his leg and entire body.

We're headed to Hawaii in ten days!! Please pray that this can be relaxing, enjoyable, and completely uneventful in the medical department. We're told by so many that Hawaii is complete paradise, and we really long to experience that without any unnecessary drama. Pray also for Madeline, that she'll have so much fun she forgets that Mom and Dad are far away. She already has a couple play dates lined up for the week she's in ND, so I'm sure she'll be just fine!

Any of you in the Cities that don't have plans on Sunday -- head down to Chevy's in Bloomington for our fundraiser. Eat there anytime that day and present our flyer (email me if you need one), and 15f your check will go to Team in Training. Also, I'm taking Partylite orders until Friday the 19th. 25f sales go to TNT.

I think that's all for now. I'll update after Mayo if there's any new news. If not, assume all is well.

Happy Mother's Day! (Brent found my mom's lipstick and had Madeline put lots of kisses on a card for me!!)

Heather

Saturday, April 22, 2006 9:44 AM CDT

Happy 1st Birthday to the new Brent! It was one year ago tonight that he received his transplant. We are so thankful to be at this anniversary -- there were several times throughout the year where we questioned if he'd make it this far. But he did, by God's grace, and he's finally on the road to recovery.

He saw Dr. Litzow this week, and all of his tests look perfect. He's decreasing a couple of meds again -- all steps in the right direction.

He also asked about the possibility of contacting the donor. Dr. Litzow made the call to the National Marrow Donor Program and learned that Brent's donor wasn't American -- he was East German, so we have to wait two years to contact him since he's international. I don't know what the difference is, but I guess we'll wait...

We're still planning (and very excited) to go to Hawaii next month. Madeline will stay with Grandma Betty and Grandpa Eldon, and then a couple weeks later when I run in Alaska, she and Brent will be with Lee and Fern.

I had the chance to hear Jan Dravecky speak on Thursday night in Fargo. She is the wife of baseball legend Dave Dravecky, who lost his pitching arm to bone cancer in his 30's. She spoke of her battle with depression through the experience of her husband's illness and other losses. Hearing someone speak from the other side of illness and with such a strong faith was very encouraging to me. I had a chance to meet her afterwards, which added to the impact of the evening.

We don't go back to Mayo for 3 weeks now, so assume no news is good news!

Love,
Heather, Brent, and Madeline

Sunday, April 16, 2006 9:53 PM CDT

How was everybody's Easter Sunday?? We had a great Easter Service this morning and then spent the day with Brent's family enjoying the beautiful, warm weather.

Madeline has become quite the big girl this weekend. She's "officially" potty-trained -- she made it through two hours of Sunday School and a whole day of playing outisde with her big cousins - all accident-free!

Brent is doing relatively well weaning from the narcotics. He wants so badly to be off them, but it's not quite that easy! In the last few days he's found a better method of weaning, so he's been feeling much more normal.

We're coming up on the one-year anniversary of Brent's transplant, next Saturday, April 22. Click on our photo page to recap our year in pictures.

Happy Easter!
Brent, Heather, and Madeline

Wednesday, April 5, 2006 8:44 PM CDT

It's been a long time since I wrote -- and thankfully, Brent continues to improve.
His therapy is going well, his pain is decreasing all the time, and his bloodwork is still looking really good.

The next hurdle is to gradually wean him off the narcotic pain medications he's been on for so many months. He does have physical withdrawal symptoms (nausea, chills, etc.) when he misses a dose, so this may not be an easy process... Please pray that it will be as uneventful as possible.

At this point, we're thinking the hip replacement will happen sometime mid-summer. By then he will hopefully have remained stable for a long enough time that the doctors will feel comfortable putting him through another surgery.

In the meantime... we're going to HAWAII!!! We have our vacation booked for the end of May to attend Carrie Ista's wedding on the island of Maui. We're getting good travel insurance, just in case, but we're going with Dr. Litzow's blessing and we're not planning on any complications this time around. Please pray that Brent's health will continue to improve so this can be a truly enjoyable, medically-uneventful vacation for us.

I'm also doing really well with my fundraising for Team in Training. So many of you have contributed so much, and I am so thankful! Raising almost $5000 is significant, but when you combine the efforts of my whole team, and then all the teams in the U.S., the amount of fundraising is absolutely amazing! Thank you to all of you who have played a part in this!

Thank you even more for your continued prayers and support for us. We couldn't have made it this far without our supporters and prayer warriors.

We aren't scheduled to go to Mayo for another two weeks, so if you don't hear from me until then, don't worry.

We'll work on updating pictures soon, so check those periodically!

Love,
Heather, Brent, and Madeline

Thursday, March 23, 2006 1:08 PM CST

Brent went to Mayo Tuesday and Wednesday and got a great report from Dr. Litzow, saying that his bloodwork looks the best it's looked in a long time. His gut seems to be getting better with the addition of oat bran to Brent's diet. Who knew that cereal would cure him??

Dr. Litzow even said that he thinks it might be possible for us to attend our friends' wedding in Hawaii at the end of May!! So... we're hoping, and checking into details....

Things are looking up for us these days. Please pray hard that it continues!!

Heather

Wednesday, March 15, 2006 1:09 PM CST

We got the call that Brent does not have parasites. He's thrilled with this news, and is sure that as is wife, I should also be happy he doesn't have bugs!!

So we'll wait to see what happens next as far as further testing.

(I'm nearing 70% of my goal -- thanks so much, everyone!)

Heather

Tuesday, March 14, 2006 10:19 PM CST

We had another busy day at Mayo today. We saw the orthopedic surgeon who is pleased with how Brent's hip has healed. He gave Brent the OK to bear as much weight as he can on that leg, letting pain and muscle strength be his guides.

Once he stabilizes otherwise -- infection markers in his blood, less immunosupression, etc., they'll look at doing a hip replacement, but for now we're in a holding pattern.

The diarhhea issue is still a problem, and so they're doing more testing, looking for parasites this time. There are some markers in his blood that indicate he COULD have parasites, so they'll check samples to see for sure. They're also checking to see if he has the antibodies for a specific parasite, which would indicate the presence of that bug. If he doesn't have parasites (which may take a while to determine), they may do some further testing for GVHD in his intestines. He does have some sores in his mouth that they think are GVHD, and often it will follow through the GI tract.

Where could the parasites have come from? Actually, they could be still in his body, having lived latent all this time, since his mission trip to Indonesia in the late 90's. His current immunosuppressed state could have made him more susceptible to an attack of the parasites, as I understand it.

Brent's energy really varies from day to day. Some days he's up for a few hours at at time, but other days he sleeps nearly all day and feels sick much of the time. Hopefully something will surface that will give an answer. Pray for energy and strength!!

He also is still having some blood chemistry levels that are a little off -- creatinine and calcium, specifically. Nothing alarming, just something to watch closely.

We're back again next week, but we will likely know something from all the tests done today in the next couple of days.

It's so hard to understand "why?" through all of this. I've quit asking that question (most days) and I try to focus on one day or even one moment at a time. It's so easy for my mind to wander and wonder what God has in store for our familiy in the future. And I want to figure it all out and know the plan right now. I have to daily surrender that -- I can't know, nor do I need to. I think that's something lots of us struggle with at many different points in life. Uncertainty is hard for those like me who like to plan ahead. I used to pray for patience. I think God has taught me patience in a way much harder than I was expecting, but I'm learning nonetheless.

It's also impossible to feel like growth could possibly be happening during these dark days, but in retrospect, I see things God has taught us, and I look forward to being able to look back and see more spiritual and personal growth and depth as this journey continues.

Thank you all so much for all your prayers. Keep in touch!

Heather

Thursday, March 9, 2006 10:39 PM CST

Brent has been steadily improving this week, for the most part. We've had several visits from nurses and physical therapists. I'm doing his IV therapy every other day, which is not a big deal at all. The physical therapist helped him walk (very slowly and with lots of arm support) on our treadmill as well as do some exercises on our resistance machine downstairs. Brent was so excited to workout again, at some capacity, anyway. We also have a huge variety of medical equipment in our house now, which is very helpful to Brent, and often entertaining to Madeline.

I am able to leave Brent here for a while at a time, so I am getting out to run errands, see people, etc. He spent a while on the computers today, fixing things, setting up a new printer... stuff he likes doing but hasn't done for a long time. Things are feeling more optimistic than they have in a while, so for that we are very thankful!

We're going to Mayo on Tuesday for a whole variety of appointments, including some testing for parasites, since Brent's diarhhea issue isn't resolved, yet he's testing negative for c-diff.

I've now reached over 40% of my fundraising goal -- thank you so much!! The running part is going well, too. It's so good for my body and mind to get some good exercise again. I missed my turnaround on my long run last weekend and ran 8 miles instead of 5 or 6, so I was tired, but proud of myself. It's been a long time since I've done that!

Keep checking in -- things are always changing, one way or another around here!

Praise God that I have good things to report this time. And pray that this is the beginning of a time of healing and hope for us.

Heather

Sunday, March 5, 2006 8:16 PM CST

Brent has been home for a day now, things are going really well, and he is loving his hospital bed. It came on Friday, only a day after I placed the order! We had a rousing game of hide and seek here tonight after supper -- a nice normal thing for a toddler's family to do!!

The home health nurse came today and showed me how to do the IV's. They'll now be coming mostly to do blood testing and physical therapy.

I'm about 25% on my way to my fundraising goal for Team in Training. Thanks so much to you who have already contributed. There are a few of you who I don't even know who have generously donated. Click on the link below to watch my progess and donate. If your company matches donations, take advantage of that option, as well. LLS is a fantasic organization that has been so supportive to us througout Brent's illness, and they lead a lot of leukemia research.

Heather

Friday, March 3, 2006 10:46 AM CST

Brent will be coming home tomorrow morning! We're all ready for him to come home so we can resume a more normal life. He'll be getting some home health care for a while, and we're getting a hospital bed in a few days, thanks to the American Cancer Society.

Thank you all for your prayers for Madeline. She has made a complete turnaround in the last few days. She's very pleasant, obedient, and happy, and has been very easily going to others again. This is a huge answer to prayer -- it was so hard to know what to do when she was so obviously troubled. Having her happy makes life so much easier!

Heather

Monday, February 27, 2006 8:50 PM CST

Brent came home for a couple of hours this evening. It was so good to all eat dinner together at home like a normal family. We're planning for him to come home for good later this week after we get some details figured out with home care, etc.

He is still losing a lot of weight -- he's now 158 pounds. Hopefully coming home will get him to eat better. His energy is lacking, but we're sure that's at least partially from his lack of appetite, which can come from the c-diff and its treatment. It's all a vicious cycle.

Madeline was so happy to have him here -- she squealed when Papa Lee drove up with Daddy in the car, and she had a great time the whole time he was here.

Please pray for a positive outlook for Brent. He's been really discouraged by this last issue with c-diff. His rehab was, (and still is), going so well. He feels as though just as one thing gets resolved, something else comes up, which is very true. But he has a hard time seeing progress and positive things when something else is now wrong. Please pray for peace and for joy for Brent.

Heather

Friday, February 24, 2006 9:58 AM CST

The doctors are pretty sure Brent has c-diff, and they've begun treating him, which has helped the diarrhea quite a bit. Hopefully a few more days of the treatment will have him feeling much better.

We spent yesterday at Mayo, and we're not scheduled to go back until the 14th.

Thanks so much, again, for all the contributions for Team in Training. We're both really excited about this, since we've been so impressed with the Society throughout Brent's illness, and we're so hopeful that their research will continue to help prevent other families from having to do what we're doing...

Heather

Wednesday, February 22, 2006 10:17 PM CST

In the past few days, Brent has been feeling not so good again. He's having pretty severe diarrhea, and has lost 17 pounds since coming to Presbyterian Homes. He's now down to 163 pounds, which is scary to all of us... His energy level is seriously lacking, too.

We had a previously scheduled trip to Mayo tomorrow, so hopefully they can find some answers. They are already testing for C-difficile virus, like he had last summer, and there's the possibility of GVHD. We're planning for the trip to be just for the day, but as always, that's subject to change.

On the positive side, his pain is dramatically reduced. He's still doing well with the therapy, although he spends the rest of the day sleeping.

Madeline will stay home with Grandma Fern. Pray for Madeline -- she's seeming really sad and different lately. I know she is really affected by Brent's absence at home. She seems to alternate between naughtiness and clinginess to me. She's having a harder time at church and the club when I leave her with the other kids. It will be hard to leave her home tomorrow, but she'll be well taken care of. The longer this goes on, the more understanding she's becoming of what's going on, and that's obviously troubling and confusing to her. It's so hard to see her having to learn such hard life lessons so young...

Pray for answers. Pray for peace and comfort and healing for Brent. Pray for wisdom for the doctors. Pray for discernment for me in handling Madeline's confusion. Pray for an extra measure of understanding for our little girl. Pray for strength for all of us.

I'll update when I can, hopefully with some answers!!

Heather

Saturday, February 18, 2006 8:17 AM CST

Brent is recovering very well and very quickly. His physical strength improves every day. He's stronger now than he was before surgery in many ways, but he's not satisfied at that, so he plans to stay in rehab a while longer. He's remaining very positive -- excited that finally he's getting better!

Thanks so much to those of you who have already supported me in Team in Training. I was overwhelmed by the quick response on my fundraising page! Keep checking the link to watch my progress.

Heather

Tuesday, February 14, 2006 11:48 AM CST

Happy Valentine's Day! Brent and I are being treated to Olive Garden tonight by our church. One of the pastors is bringing it to us, and Madeline will be playing with her friend, Jack, so Brent and I will actually have some time alone together.

I am excited to say that I have my fundraising link set up now. I am so geared up to raise money for Team in Training -- a part of the Leukemia and Lymphoma Society. Check out my page by clicking on the link at the bottom of this page, and please consider a donation to this awesome organization, in Brent's honor. I've started training for the Mayor's Midnight Sun Half Marathon in Alaska in June. Running isn't new to me, so my real challenge is raising the funds to support patients and promote research so other patients and families don't have to battle like we have these last three years. You all have been so supportive of us, and this is just another way that you can support the greater cause of treatment and research for blood cancers.

Another donation to consider is to CaringBridge. This is a free site, available to families like ours. Follow the link to make a donation so this service can continue!

Heather

Monday, February 13, 2006 10:24 AM CST

Brent is doing well at Presbyterian Homes of Roseville. He's sleeping a lot, and will start an agressive therapy program today. Madeline and I have been there each day for a while, although she can't handle too much time at once without becoming very naughty!!

Brent is very hopeful that this will be a successful rehab experience. We don't really know how long to expect him to be at Pres Homes -- we have to see how well the rehab goes, but his spirits are strong and hopeful that this will be helpful and that he'll move quickly in a healthy direction.

I'm gearing up to start my fundraising campaign for the Leukemia and Lymphoma Society's Team in Training!! I'll have a link set up here in the next few days so you can visit my personal fundraising site, and I'll be sending personal letters to many of you, as well.

Happy Valentine's Day tomorrow!

Heather

Thursday, February 9, 2006 5:49 PM CST

Well, lots of progress today. They finally declared Brent's cultures clear of infection, so there's nothing new in that regard. He had his pick line placed this afternoon, and he'll be leaving the hospital tomorrow morning.

We decided on Presbyterian Homes in Roseville. I visited there today, and I think it will be an excellent place for Brent to "get better", as I'm telling Madeline. I'm much more comfortable with this process after touring the facility and talking to people there.

Brent is very motivated to get there and work hard at rehab so he can come home in much better shape than he left here last week. We're all at the point that we'll do whatever it takes to get him better.

Thanks so much for the prayers and support during these last few days. It hasn't been easy, that's for sure!

Heather

Wednesday, February 8, 2006 9:55 PM CST

We're still waiting for conclusive results on all of Brent's cultures. He's still having fevers and feeling not quite right, so we wait, again, to see what shows up. In the meantime, they can't proceed with putting in a pick line in his arm, which he'll need for administering the IV antibiotics once he leaves the hospital. They have to wait until he's cleared of all infection before they put in the line. (A pick line goes into the upper arm and runs through the shoulder area to the heart.)

Madeline and I are still at home, and I spent much of today on the phone trying to find the best rehab center for Brent. We're working with social workers at Mayo. "Rehab" is another term for "nursing home." I certainly never expected to be looking for a nursing home for my husband, but he needs more care than we can give at home, yet he's approaching the time when insurance will kick him out of the hospital. A very gracious lady from our church offered to go with me tomorrow to visit some homes in the area. Brent's condition puts quite a few limitations on our selection of facilities, since he'll need IV antibiotics, physical therapy, and a private room (due to some lingering infections.)

At this point they're saying Friday is the earliest he'll be discharged from the hospital, but that's always subject to change. I'm certainly learning to be a more flexible person...

Madeline still has a cold, so we probably won't be going back to Rochester unless he's there longer than they currently anticipate.

Brent is much more receptive to the idea of a nursing home than I am. I have a really hard time swallowing the idea, but he's very motivated to get better faster, and he knows that a rehab facility will be the best way for him to improve. I know that, too, but I still can't fathom him living in a nursing home.

Pray for peace in all these adjustments.

Heather

Monday, February 6, 2006 8:08 PM CST

I'm back home, and Madeline will be here shortly. We both have colds, so we'll stay home until at least she's better, and then possibly go back to Rochester.

Brent's pain is still there, but improving, he thinks. He's much more mobile -- walking on crutches and even slightly weightbearing on his right leg.

He had a fever again last night, so they're doing more testing to figure that out.

At this point, he'll be hospitalized at least until Wednesday and then will likely go to a rehab unit for a short time.

Fern is with him now -- Lee had to come home, too, but he'll probably also go back.

I'm assuming I'll know more about the fevers sometime tomorrow...

Heather

Saturday, February 4, 2006 1:45 PM CST

I've been here about a full day now, and I was surprised to see Brent's condition when I got here. No one can really explain what it's like, I just had to see him for myself. I expected his pain to be less. I expected him to be more alert. I expected that he'd finally be resting comfortably. He does still have lots of pain, although it's different. He's not sleeping well because of his discomfort and changes in meds, so when he is awake, he's not very alert.

From the medical standpoint, he's doing really well, which is encouraging, because from the family members' standpoint, we are continuing to see him suffering miserably.

His incision is healing really well. He was up with physical therapy for a short walk down the hall this morning (with lots of assistance). His blood counts are looking good, and we haven't heard of any further infections. He's not having any fevers. We have to keep all of these good things in mind and remember that the pain he's in now is hopefully temporary and recovery should happen relatively quickly. Still, for the moment, he's in pain, and that's really horrible to see.

They are still talking about discharging him early next week, and we're not sure what will happen from there. We're trying to get some sort of home health set up, but it's proving to be an enormous insurance issue. There's been talk of a rehab center as an interim step to home. I guess we'll have to see how the next few days play out.

Pray for fast healing of his leg, internally and the incision. Pray for elimination of infection and no new infections. Pray for rest and sleep for Brent. Pray for peace and calm and patience while his body heals. Pray for wisdom for all of his doctors. Pray for stamina for us, his family, as we care for him. Pray for peace for us, as well, as the prospect of caring for him on our own seems overwhelming right now. Pray for an extra measure of understanding for Madeline. She is so gentle with him, yet sometimes it's hard for a two-year-old to understand that her needs need to wait a while so Mommy can take care of Daddy.

One of Brent's nurses, Teresa, talks about how complications always fit into two categories: things that can be fixed, and things that can't. Seems simple, yet we don't always think that way. I think Brent's issues are being dealt with and being FIXED right now, so hopefully we can see brighter days ahead soon!!

God bless you all,
Heather

Wednesday, February 1, 2006 5:39 PM CST

The surgery is complete, and the doctor told Lee and Fern that it went just as expected. They successfully removed the femoral head/ball, which had started to flatten and appeared very dead. This was the source of Brent's pain, most certainly, since the shape of the ball no longer fit the socket. Seeing that the ball was in bad shape confirmed to the doctors that this surgery was the right decision -- the bone wasn't going to get any better. They decided not to use a cement spacer in Brent's hip, and whenever the bone marrow transplant team thinks Brent's general health has stabilized enough, he'll go back to surgery to get an artificial hip. In the meantime, he'll be on crutches, and hopefully be able to walk with just a cane in a few weeks.

They also cleaned out all of the visible infection in Brent's hip with an antibiotic wash, and Brent will be on IV antibiotics for several weeks, even after coming home, to catch any lingering infection.

Praise God this went well!! Hopefully this can be the first step toward comfort and healing for Brent. Thank you to all of you who prayed today.

Speaking of healing, I'm feeling better so I think I'll be ready to go down to Rochester tomorrow. Now Madeline has a cold, though (at Grandma Betty and Grandpa Eldon's), so I'm not sure when our whole family will be together again -- hopefully not too many days...

Keep checking throughout the week for more info.

Heather

Tuesday, January 31, 2006 3:05 PM CST

Things never really go as planned, do they? Yesterday I came down with the stomach flu, so I can't even be with Brent in Rochester for his surgery... We're both really bummed, but he's being taken care of.

Here's the scoop: My friend Erin drove me and Madeline to Alexandria yesterday to meet my parents -- Madeline's staying with them for a while while Brent's in the hospital. (Along the way to Alex, I got sick....Thank God for good friends who don't mind the flu!!)

Brent's parents are with him in Rochester and he had all his final appointments today before tomorrow's surgery. He does have staph infection, more specifically MRSA, a type that's quite resistent to antibiotics, in his hip. The plan is to do surgery in the morning to clean out the infection and remove the ball portion of his hip joint. While they are doing surgery, they will decide whether or not to put in a cement spacer infused with antibiotics. I'm not sure what will be the determining factor on that decision.

The doctors are hopeful that eliminating the infection both by surgery and specified antibiotics will make Brent feel 100% better.

Some risks of the surgery include the MRSA getting into his blood (they'll treat preventatively for this), bleeding, clotting, and further infection. Aside from this specific infection and his hip, Brent is healthy -- his blood counts are good and his organs are strong, so they're very hopeful about the surgery. After surgery, he'll be hospitalized at Mayo until early next week.

I don't expect to know anything more until mid-day tomorrow. I'm on my way to my own doctor now, just to make sure I don't have anything more serious than the stomach flu... (by orders of Dr. Litzow!)

Heather

Sunday, January 29, 2006 8:23 PM CST

I just called the hospital for culture results, and the nurse wasn't completely confident in what she read to me, but it appears that there is a staph aureous infection in Brent's hip. We'll be calling first thing in the morning to see if that changes anything in the plan for the week. Staph aureous is the same infection he had in August that made him so sick, so we're nervous about this...

As of now, we're scheduled to go early Tuesday for appointments and x-rays with the surgery tentatively planned for Wednesday.

Madeline will spend the week with Grandma and Grandpa Hermunslie so both Brent's parents and I can be in Rochester with him for the surgery/recovery.

I'm guessing there will be lots of updates this week, so keep checking and signing in.

Thanks for your prayers...
Heather

Friday, January 27, 2006 12:21 AM CST

If you missed my update last night, you might want to look in journal history.

Brent had the hip aspiration this morning, and things didn't look infected, so he will be coming home today. The plan is to see the orthopedist on Tuesday and schedule surgery shortly after that.

There are a couple of concerns in his bloodwork, including possible Epstein-Barr virus, which would explain his fevers. It's not certain, but repeated testing in the coming weeks will confirm it in either direction.

It's been a long three days waiting here at home for all these results. We didn't know this trip would be quite so involved, but hopefully some answers will be found.

Heather

Thursday, January 26, 2006 11:09 PM CST

I have some news about Brent's tests today. He has fluid in his sinuses -- possibly a sinus infection -- which could be part of the culprit for his fevers and yucky feelings. He sees an ENT specialist tomorrow.

The fevers seem somewhat connected to when he eats, which has the doctors puzzled -- maybe a GVH reaction???

But the biggest news is that there is still fluid on his hip. This is particularly concerning to Dr. Litzow, so Brent has stayed overnight again and will have the fluid aspirated in the morning. They're planning to be more thorough/deep in this aspiration, hoping to figure out what this fluid is and where it's coming from. They will culture it again, looking for infection. If it comes out looking obviously infected, Brent will likely end up in surgery tomorrow to remove the ball portion of his hip joint.

Dr. Litzow now has decided to bypass the core decompression surgery and go straight to the removal of the ball, probably next week, if not sooner.

At this point, they are not planning to do a replacement because of infection issues, so Brent will be without the ball of his hip joint for a while. This should eliminate the pain and give him a chance to rebuild his muscular strength, but walking will continue to be difficult, although better than currently.

All these details are still a little sketchy, but I hope to know more by tomorrow sometime, so check back.

Heather

Wednesday, January 25, 2006 9:18 PM CST

Thank you all for so many encouraging messages this week here, by phone, and by email. We really couldn't do this without all your support.

This is a big week -- Brent met today with infectious disease doctors at Mayo in an attempt to finally get to the bottom of all his continuing fevers, etc. He's with his mom, and they're staying overnight to do some more testing tomorrow. He cannot have hip surgery until they figure out what is causing his persistent fevers (as recently as Sunday). Please pray for clear answers so we can treat the problem and proceed with surgery.

They did determine that he does have some degree of graft vs. host in his stomach, so he'll be started on a steroid "drink" ( I can't think of the right word) that will coat his GI tract, but not absorb into his bloodstream, so he shouldn't have the negative systemic effects like with prednisone. As I understand it, this is early or mild graft vs. host, so hopefully with treatment it won't become severe like his skin did last summer.

Yesterday Madeline and I got to visit a Middle School in Chaska to speak on behalf of the Leukemia and Lymphoma Society as the students kicked off their "Pennies for Patients" fundraiser. It was good to get out and talk in public about how leukemia has affected our family. We also heard the stories of two other families whose children have been affected by leukemia. Brent was supposed to go, but as is increasingly more common, he wasn't up to it, so Madeline and I went without him. Madeline was completely enamored with the large crowd of big kids, and she displayed her new-found skill of nose picking during my speech. At least the kids laughed...

Tomorrow night I'm having dinner with a friend, Sue Kovach from Ashland, WI, whom I've never actually met. We have gotten to know each other through our Caringbridge sites, and she recently lost her husband, Darryl, to leukemia. I'm really looking forward to meeting another young woman/mother in a similar situation.

Some fun news is that Fern entered Madeline and her cousin Matthew in a drawing to win 12 tickets in a box suite for Sesame Street Live this weekend at the Target Center, and Matthew won! We're really excited to go see all of Madeline's favorite characters. She doesn't know about it yet, but I'll probably start prepping her soon. We even get to "meet and greet" the characters! This is a 2-year-old's dream!

This spring I'm planning to run for Team in Training again. My friend, Jenny, is joining me in training for a half-marathon (I'm taking the easier route this time -- I've done 5 full marathons, and now's not the time to tackle another one) in Anchorage Alaska. Team in Training is another facet of the Leukemia and Lymphoma Society. I ran a marathon for them in October 2004 in San Francisco. I'm even more excited this time after all Brent has been through. I learned at our presentation on Tuesday that LLS is the largest organization raising funds for researching a particular disease. I feel so passionate about this organization after our experience both with my running in San Francisco and with Brent being the honored patient this past fall for that same race. They have been so truly supportive of our family, financially, emotionally, and practically. The team that ran in Brent's honor recently brought us about 30 frozen meals. They have been a lifesaver during these really hard weeks.
Look soon for a link on this site to my team in training webpage. I'll be asking for your contributions to LLS!!

I have a kid on my lap begging for milk, so I need to sign off. Hopefully I can update soon with some sort of test results.

Heather

Saturday, January 21, 2006 1:12 PM CST

Dr. Litzow called last night with biopsy results. Although still somewhat unclear, it appears that the skin problem is NOT graft vs. host, but rather a drug reaction. There may be some graft vs. host in the stomach, but since it's not severe, we'll wait and see what develops before pursuing any treatment.

Dr. Litzow will contact orthopedics and schedule a core decompression surgery for Brent ASAP, likely within a couple of weeks. This is a fairly simple surgery with low risk of infection, and it may help to relieve pain and promote healthy bone growth. There's about a 1 in 3 chance that it will be effective, but it's our only option at this point, so we're excited to try it. If it doesn't work, we'll look at other options then, including the possibility of total hip replacement.

Heather and Brent

Friday, January 20, 2006 5:28 PM CST

Okay -- I will be brief as to not dig a deeper hole:

Let me sincerely apologize to Lee and Fern. It's clear to me through the response I've received that my words were hurtful to them, and that was by no means my intention. I sincerely apologize to both to them, as well as to the rest of you for giving a wrong impression.

Lee and Fern, as well as the rest of our family members, have been so much a part of Brent's care that I can't imagine what it would have been like without them. We are incredibly grateful for all the support around us.

But, I am hurting, and I made a mistake in my wording that was misunderstood by many people. I am sorry.

This episode is not the first time that I have felt misunderstood here on various issues and by various groups of people, and for this reason, I think in the future I will try to keep my information on this site informational and less emotional.

That said, I would invite more personal correspondance with many of you. Please email us directly.

----

Now, for the medical update:

We're waiting for Dr. Litzow to call with biopsy results from both skin and GI tract. Preliminary results were somewhat inconclusive yesterday.

Brent will most likely be having surgery of some kind on his hip in the somewhat near future, but the details of that are still pending, as well.

Basically, we don't know anything new FOR SURE, but there are some options on the horizon, and I will post again when we have a better idea of what's going to happen.

----

We did finally get new pictures up, so please check them out!

Love,
Heather

Wednesday, January 18, 2006 4:50 PM CST

It has been brought to my attention that my journals have given the impression that Brent's family is not being helpful to us anymore. First, let me clarify that they have been an integral part of his care from the beginning, and that hasn't changed. I am sorry for any misunderstandings that happened.

This issue has made me think through a lot of things. First, it goes without saying that the written word can easily be misinterpreted. What I mean to say may not come across clearly all the time. I try so hard to be concise on this page and to explain things briefly enough that you can get a grasp of what's going on without giving every detail.

I often battle with how much information to share here. I have been quite transparent lately regarding the difficulty of this situation from my perspective as Brent's wife and 24/7 caregiver. In no way have I meant to imply that we are completely isolated and without help. We certainly do receive help from friends, family, and acquaintances alike, yet NO ONE is here every day around the clock to see what it's really like at our house.

I often debate about publicly thanking those who have helped us, but I have decided against it most of the time, because I want to keep this page about Brent's condition and how we are coping as a couple and as a family. Please do not interpret this as ungratefulness -- sometimes I prefer to be more private in my thanks. I also don't feel the need to broadcast every detail of our daily lives.

Back to my transparency --- although I have shared that this time is dark, difficult, and lonely, that is only the beginning. No one can imagine the emotions that go along with such an intense and such a long battle with such a serious illness. People often see Brent and comment that he looks good. He is looking good lately, as you can see on the above photo. However, he only sees people on his really good days. Most days he's nothing like that. Most days he's home in bed much of the day. I can't even share many of the details of his suffering. Only a very few people know how truly awful this has been for him physically, and for both of us emotionally. I try to give as accurate of a picture as I can on this site, while maintaining the privacy that every family needs.

Also, please remember that this webpage is just my perspective. I don't claim to speak for any other family members or even Brent himself. This is the journal of a wife who is taking care of a critically ill husband and a very active toddler at the same time.

My heart is to share my burden with those of you who know and love us. As a family we often talk about how none of us can completely understand each other. I can't understand the pain of seeing my child suffer. Lee and Fern can't understand the pain of being 28 and caring for a very ill, very disabled husband while raising a child. Brent can't understand either perspective, but none of us can begin to understand the level of his pain and suffering through these last three years.

All this said, we don't expect any of you to truly understand -- we're just hoping and praying every day that you can glean something from our experience that makes you love your loved ones that much more.

I am so thankful for this website. This way I am able to give out accurate medical information, etc. to mass amounts of people without having to personally notify everyone. We are certainly more connected to friends and family this way, because there is no practical way that we could communicate this completely with all of you individually.

Now, how is Brent today? In lots of pain. We are headed back to Mayo tonight for a day full of appointments tomorrow. They are suspecting a return of the graft vs. host in both his skin and his "gut" (their terms, actually). He had a skin biopsy yesterday and will have a biopsy of his stomach and/or intestines tomorrow. We also will meet with the orthopedic doctor to discuss options with Brent's hip. He's becoming increasingly more open to the possibility of a hip replacement in the near future.

I will update when we know more, but the nature of testing is that it takes a couple of days, usually.

Madeline has a pretty bad cold, so she's staying home with Grandma Fern and Papa Lee.

God bless you all,
Heather

Saturday, January 14, 2006 10:43 PM CST

The adrenal tests came back "normal," so we're still left wondering what's going on. The only ideas they have right now are that perhaps he's suffering a combination of withdrawal from being off prednisone, sedation from pain meds, and the side effects of all the narcotics/pain meds.

He sees the ortho doc again this week (Thurs.), so please pray that some decisions can be made. Brent has had no improvement at all since seeing him last, in fact, his pain seems worse.

Brent continues to lose weight -- to the point of concern, almost. His appetite is very weak most of the time, and he's now under 180 lbs. His muscles have atrophied an incredible amount, so regardless of what happens with his hip, he will need to have a lot of rehab to regain his strength.

Heather

Thursday, January 12, 2006 7:28 PM CST

Again, I've been scolded by Doug Elliot for not updating recently. (See what you get, Doug, when you complain ;-)!!)

Honestly, the last couple of weeks have been really hard. Brent's condition hasn't improved. It hasn't worsened much, either -- it's stayed stable at "gross." We've both been discouraged, frustrated, and exhausted.

I took a couple of days off from my caregiving duties and went home to ND while Brent and Madeline stayed at our home with Brent's parents. Then this week my Mom came for a couple of days, and my Dad is planning to come next week for a bit. All of these things are so helpful.

Today we came to Rochester and spent a long time with the doctor, discussing all of these frustrations. It's so hard that we can't figure out what's going on that makes Brent feel so awful all the time. They will be running some adrenal tests tomorrow to see if maybe some of his hormone levels are not correct, which could be causing the nausea and extreme fatigue. (He's been sleeping nearly around the clock for a couple of weeks now.) Next week he will follow up with the orthopedist to discuss the conditon and treatment of his hip in further detail.

I need to get back to the hotel room. I'm in the lobby and Brent and Madeline are coloring in the room. We're staying at the Hawthorne Suites where we spent most of July. Madeline and I had a blast in the pool a while ago...

Heather

Tuesday, January 3, 2006 9:25 PM CST

We heard yesterday that the cultures all came back with no growth -- no organisms found -- no infection. Praise GOD! Yet, Brent is still sleeping almost around the clock, he has chills, and feels generally cruddy. He will be seeing the doctors on Thursday again, so maybe they'll have insight...

One of Madeline's new favorite things to do is go potty in the potty!! This was all her idea, and I must say, it's going very well... She also got a big girl bed this week and we took down her crib. She got some money for Christmas, so we went to Target to spend her money, and she bought a couch, a pillow, some books, Chex Mix and ice cream. All for $50 (or a little more...) We had lots of fun!

We're still working on the pictures, so keep checking!

Heather

Monday, January 2, 2006 10:09 AM CST

We're still home, and we're still waiting for results on the cultures they did on Friday. What an emotional rollercoaster they had us on -- we went from being told that he'd likely have radical surgery to being told to go home and call in a couple of days...

Aside from the hip issue, Brent is doing really well. Right before Christmas, they took him completely off prednisone. Praise God! This week the dermatologist took him completely off light treatments. Again, Praise God! This means that he'll probably soon be having visits to Mayo every OTHER week!! That's all provided that this hip gets figured out.

The two ortho doctors seemed to have conflicting opinions on whether or not the osteonecrosis has progressed. They want to see him again in a couple of weeks, hoping that the fluid will have decreased by then. In the meantime, they told him to rest.

We're working on updating the pictures, so keep checking!

Heather

Friday, December 30, 2005 10:14 PM CST

The doctors did not find infection in the fluid that was aspirated, so they ordered a culture to be done. Brent and Heather are back home now waiting for the culture results. Once again we are left wondering what's going on.

Betty (H & B's internet is down.)

Friday, December 30, 2005 1:18 PM CST

Yesterday's MRI indicated that there is fluid on Brent's hip, and the doctors are suspecting an infection. This afternoon they will be aspirating fluid, and if they find any that looks infected, Brent will be going into surgery later today.

Please pray for wisdom for the doctors, for pain relief for Brent, and for strength and peace for Brent, Heather, and Madeline.

We will update when we have more information.

Betty (Heather's mom)

Thursday, December 29, 2005 8:35 AM CST

We had a very good Christmas -- Brent managed very well. We were in ND and saw much of my family, and then we celebrated with the Carlsons on the 27th at Lee and Fern's. Madeline's favorite gift, by far, is her new vacuum cleaner from Grandpa John. Hopefully we'll have new pictures up relatively soon.

Brent is in MRI right now to take the look at his hip that we've been long-awaiting. We'll know this afternoon after talking with the orthopedic surgeon what will be the next stage of treatment for the osteonecrosis.

I won't spend any time projecting about possibilities, just check back this evening or tomorrow for an update about what they found.

Heather

Saturday, December 17, 2005 4:37 PM CST

Brent seems to be doing somewhat better. He saw a pain specialist on Thursday, who changed some of his meds as well as adding acupuncture. Brent's still in a lot of pain, but it does seem to be improving. Praise God!

I'll be going back to Rochester with him next Thursday.

Heather

Wednesday, December 14, 2005 11:15 AM CST

Once again, nothing showed up. We were in the ER at Mayo last night until after 9:00, and then they sent us home. We called the Bone Marrow unit of the hospital, and they agreed that we were fine to go home and that there was nothing additional that they would do aside from giving him the same meds he takes at home anyway.

Needless to say, I was frustrated. Relieved that nothing serious was wrong, but still frustrated. The ER doctor seemed to think that his level of pain is reasonable for the amount of atrophy in his leg and the fact that he's undergoing rehab. He also believes that his sick feeling is a combination of the pain meds effects and their withdrawal symptoms (if Brent goes a little too long without taking them.) So, basically, we were told that this is just the way things will be for a while, until they get his leg in better shape.

They x-rayed his hip in ER and said it looks a little worse than the last x-ray, but they weren't able to be any more specific than that. We're still waiting for the MRI on the 29th which will give us a much more conclusive answer about the condition of Brent's hip, and hopefully they'll be able to develop a new plan of action at that point.

As a caregiver, I'm exhausted. I say that all the time, but it seems to continue. We've been getting some additional help lately with food and there's a possibility for help cleaning. All the daily things add up so fast when I'm trying to do it all myself, all while trying to deal with the heaviness of Brent's illness and all the responsibilities that involves, and while attempting to give Madeline attention, time, and some normalcy.

Brent's back to Rochester tomorrow for his scheduled appointments, so we'll see what transpires after seeing his primary doctor.

Please continue your prayers. As Jenny said in the guestbook, this time does feel dark. As Brent's family, we really feel at a loss. Seeing him in this much pain makes us feel so helpless.

His doctor called just now, and they are planning to get him an appointment with the pain clinic tomorrow while he's there, so hopefully they can come up with something. They've tried before, but it's been a while, so maybe they can try something different.

Heather

Tuesday, December 13, 2005 1:19 PM CST

I'm taking Brent to Mayo again today. We're assuming he'll be admitted because he's having severe pain, feeling very sick, and he seems to be getting jaundiced. Please pray for safe travel, wisdom for the doctors, accuracy in their testing, and ultimately relief for Brent from all his symptoms.

We've been told to go to Saint Mary's ER this time because they have more accessible testing equipment.

Heather

Tuesday, December 6, 2005 8:43 PM CST

We are so tired of Brent constantly feeling funky. Ever since long before he was hospitalized, he's felt generally cruddy, but still nothing has shown on the tests. Today he even had a temp again while at the doctor's office, but it quickly went down, so they weren't overly concerned and they sent him home.

In addition to all the pain in his leg, he feels like he has the flu all the time, and he's consistently losing weight, which isn't necessarily desirable anymore. He's now under his pre-cancer weight, and I'm having to buy him smaller and smaller pants. He's back to a 34, which he hasn't been since early in our marriage.

We're getting ready for Christmas, nonetheless. We did our tree last weekend, and it's so nice to have it up. We missed the Bethel concert that we always go to because of Brent's hospitalization, but we're still listening to lots of Christmas music at home.

Please pray that this can be a really good Christmas for us and that Brent will feel increasingly better. He really needs a break from this misery.

Heather

Friday, December 2, 2005 9:14 AM CST

Praise God! This was a short hospital stay -- we got to come home last night, less than 24 hours after Brent was admitted.
There's no conclusion as to what happened, but he's doing much better. The cultures are still pending, so we'll see if anything shows up there.

Heather

Thursday, December 1, 2005 11:45 AM CST

Brent is hospitalized yet again... We had just left Rochester after his weekly appointments when he suddenly became sick -- vomiting and fever. So, we turned around and went back to the clinic where they were just as perplexed as we are -- he was doing so well.
At first they didn't admit him, but he started feeling worse, so he ended up staying in the hospital last night. They haven't concluded anything, but he is feeling better, and they're doing the whole battery of tests -- cultures, scans, etc. -- as well as starting him on antibiotics, of course.
We don't know how long we'll be here -- hopefully this will be a short stay. They have to be very conservative with him and treat him extra cautiously, especially since he's had some unidentified underlying "junk" going on for several weeks now. Hopefully something will show up this time on the tests so they can treat appropriately and get him feeling better again.
I'm still staying with my friends here in Rochester -- they've been a Godsend this week.
I'll let you know when I know more.

Heather

Tuesday, November 29, 2005 6:28 AM CST

Welcome to winter in Minnesota (and North Dakota -- I haven't forgotten my roots, Mom and Dad!) I'm watching all the school announcements this morning and remembering the anticipation -- hoping school would be cancelled for the day. And then we'd figure out how to get together with our friends... snowmobiles, 4-wheelers, Dad's daredevil winter driving, etc.

The three of us are headed to Rochester this morning. I'm not excited about the roads, but thankful for a 4-wheel drive that has been good to us in the past. I'm just not so sure about everyone else out there on the roads -- that's what really scares me.

Brent sees the dermatologist this morning, and we are hoping that she will reduce his light treatments to one day/week. His rash seems to be holding very well, and his skin really does need a break from the lights. And we'd LOVE to be able to make our Rochester trips just a day trip each week.

I'm enjoying my quiet morning moments with my coffee here, but I need to get my family up and moving and out onto the winter roads.

For all of you stuck at home today, have fun!!

Heather

Saturday, November 26, 2005 9:41 PM CST

We had a wonderful Thanksgiving here with Brent's family, including cousins from Illinois. We even braved the crowds and went to the Mall of America on Friday. Brent was feeling very good for those two days -- much better than usual.

Today he's been pretty worn out, but we stayed home and rested and he's feeling better this evening.

Tomorrow is his Grandpa John's 90th birthday party -- a big open house at his church with lots of special guests.

Monday night is my Partylite Candle open house from 4-8... please stop by if you're around and interested in candles. (4026 Lake Road, Robbinsdale, MN)

And Tuesday all three of us head to Rochester for a couple of days. I just ran into a college friend (Jenny Mulvihill) the other day who lives in Rochester, and she invited us to stay with them whenever we need to, so we'll be taking her up on that offer, I think.

That's all for now....

Heather

Tuesday, November 22, 2005 9:31 PM CST

Brent's back in Rochester again for his weekly appointments. His shingles have become more painful and he's been more nauseous lately, so they put him on a stronger antibiotic to ward off any underlying infections that may be there. He continues to taper down on his prednisone dosage and they are hoping to cut his light treatments to once per week in the next couple of weeks. That would be huge, because it would mean only a day trip to Mayo -- no overnight!!

We are having 15 of Brent's family here for Thanksgiving, and we're so happy and thankful to do so. We are so thankful that Brent's cancer is in remission again, and we're hopeful that his complications will cease soon. We are thankful for life, for family, and for the One who sustains us.

I'm having a Partylite Open House next Monday night, so those of you interested in getting some candles for Christmas or yourself, please stop by on the 28th between 4-8. We'll both be here, and we'd love to see you! Email me for directions if you've never been here.

God bless you all this Thanksgiving.

Heather

Tuesday, November 15, 2005 11:10 PM CST

Brent had a rough morning at home, but made it to Rochester with his dad. Dr. Litzow's perspective on his situation is that although it is rare, shingles really can cause high temps and a really miserable feeling. So, we're hopeful that as the virus flushes out of his body, Brent will feel better.

Please pray for Nate Gonser. He's a good friend of my brother Ryan and his wife. Nate had open heart surgery today at Mayo to update a procedure done when he was 7. He's now 23. Although the surgery appeared successful, Nate's heart didn't restart itself properly once taken off the heart-lung machine in surgery. He's now back on the machine and resting for 24 hours until they attempt to take him off again. Pray for peace for the family as they wait, and pray for complete recovery of Nate's heart. Pray for Nate's new wife, Sheila. I particularly hurt for her...

Heather

Monday, November 14, 2005 3:32 PM CST

Brent will be coming home in a couple of hours. They decided to stop the antibiotics since nothing has shown up infection-wise. They consulted the infectious disease doctors, and they said that all his symptoms, including the fever and the flu-like stuff from the last few weeks, are classic shingles symptoms, so that's likely all he's dealing with. He'll continue treatment for the shingles with meds at home.

He'll be going back to Mayo tomorrow for all his regularly scheduled programming!

Heather

Saturday, November 12, 2005 9:47 PM CST

Brent is still in the hospital and had some fevers again today. Still nothing has come of the blood cultures, so he continues his antibiotics (vancomycin and zocyn) for the possible infection and antiviral medication (acyclovir) for the shingles.

He's taking lots of pain meds for his hip since he hasn't had enough physical therapy this week, but the meds help him sleep a lot, so that's probably a good thing.

He was told by his nurse tonight that she'd have to call the police if she caught him on his cell phone one more time.... Apparently Methodist Hospital really enforces the no-cell-phone rule!

If he continues to be hospitalized, we'll transfer him to Mayo for sure by Tuesday so he can get his light treatments. I'd like to transfer him sooner, but he still holds out hope for getting to come home for a bit before having to go to Rochester on Tuesday anyway...

Heather

Friday, November 11, 2005 10:10 PM CST

Today they determined that Brent has shingles. They still don't know for sure about the infection, so that's probably a good indication that if there is one it's likely not so strong.

As far as the shingles go, we really know nothing. Brent is on a general medical floor, and they're not quite as helpful and informative as we're used to on the BMT floor at Mayo. He's taking an antibiotic for the shingles that should help to control them somewhat, but not entirely. They're on his chest and back so far.

The weight of responsibility is so overwhelming to me some days. I had a chance to get out for dinner with my dear friend Jenny tonight WITHOUT our kids. It was so relaxing to enjoy a few hours without any real responsibility.

Please, please pray for stamina for all of us, and pray for Madeline's sleep. She's getting a lot better... Last night was nearly 12 hours for her. She still has some rough nights, though, and she's beginning to transition into not napping every day....

That's all for now. Please sign the guestbook -- it's really encouraging to know who's checking up on us.

Heather

Thursday, November 10, 2005 11:24 PM CST

Brent is hospitalized here in the Cities with some sort of infection, probably. We went to the Methodist Hospital ER early this morning when he spiked a fever of almost 103. They have him on IV antibiotics and are running all the cultures and necessary tests to determine if and where there is an infection and how to best treat it.

His doctors here are in contact with his doctors at Mayo, in order to best understand his complicated history and to collaborate on the best form of treatment.

The only results we have today are that his lungs are clear, so that is not the source of infection.

He did get much more comfortable throughout the day, and the fever was quickly reduced with Tylenol, so hopefully this means it's a less serious infection than last time.

Again, we wait.....

Until I know more,
Heather

Thursday, November 3, 2005 8:41 PM CST

All three of us spent the week in Rochester and things went relatively well. Madeline has a cold and her first ear infection, so Ryan (my brother) came down at the last minute on Wednesday to watch Madeline so I could be with Brent at his most important appointment.

He's feeling generally not good, but his tests aren't showing anything strange. He tends to feel very flu-like at night and in the morning, and he isn't eating well, but he usually has a period of time during the day when he feels at least partially decent.

Madeline's asking to go to bed, so I'm going to honor that request!

Heather

Thursday, October 27, 2005 12:15 AM CDT

Brent is home again, and still in much pain. He was unable to get out of bed by himself this morning, so after lots of drugs, his sister, an occupational therapist, came to help him get up. She is concerned that he may have some bruising from the physical therapy he had this week.

Please continue to pray for pain relief, and also pray for wisdom and strength for me. Being the caregiver so far from the doctors and with a needy 2 year old around is very very difficult. She seems to be quite afraid of the nighttime, and doesn't do well with transitions. Balancing caring for Brent and Madeline continues to be nearly impossible.

Heather

Saturday, October 22, 2005 9:18 PM CDT

Today is six months past transplant. I don't know that that has any medical significance, but it's kind of a landmark amount of time.

Brent's pain has become incredibly unbearable, yet they're fairly sure that much of the pain is muscular, probably due to a combination of lack of use and overusage at the same time. Holding weight off his leg puts a lot of strain on the surrounding muscles.

This past week they x-rayed his hip and initially they thought it had gotten worse, but the orthopedist read the results and said, "no change." His next appointment with the ortho doctors and MRI are scheduled for December 29. He is having a consult with physical therapy this week, so hopefully they can provide him some relief from the pain.

He has slept most of the weekend at his parents', while I went to my parents' to pick up Madeline, who had been up there for the week. Madeline and I are home now, but he decided to stay at his parents to continue resting until tomorrow.

Our kitchen will be finished this week, and we are already enjoying it immensely. It has opened up our house so much, given us something "normal" to think about, and will give Brent a comfortable place to sit while I do all the regular kitchen duties that life demands. Our old kitchen was completely separated from everything and so small that Brent couldn't be in there with me while I was cooking. Now he can sit at the dining room table with Madeline and play with play-doh while I'm doing dishes, and we can actually feel like a family hanging out together. Famly time has become extra important to us, especially since Brent is gone almost half of every week.

Madeline's begging to play Elmo computer games, and I'm running out of things to say, so I'll sign off for this time.

Please continue to pray for strength for all of us -- emotionally, physically, and spiritually.

Heather

Thursday, October 13, 2005 11:00 PM CDT

Brent's doctors determined that his back pain is muscular, which is great news!! There's also a question about whether or not he's absorbing his pain meds, so perhaps his pain isn't QUITE as severe as he'd thought. He's now feeling not so guilty about taking supplemental pain meds, because his primary one is likely not working well enough/at all.

Everything else is pretty much the same. Continue to pray for perseverence and strength for all of us.

Heather

Monday, October 10, 2005 2:19 PM CDT

Brent left this morning for his weekly trip to Rochester. He'll be back Wednesday night. This time he will see another orthopedic specialist because he is now having back pain. We are hoping and praying that this is nothing serious. His hip hasn't improved.

Brent is very frustrated with his situation. He constantly lives in pain, he feels as though there's nothing he can do, and very few things bring him joy anymore. Please pray hard for his emotional state and for us as his family to know how to encourage him, because like he says, we really cannot understand what he's going through.

Brent's coming and going continues to be confusing for Madeline. She usually has a rough day when he first comes home, and sleeping that first night is usually quite interrupted. Continue to pray for her through all of this. Her little life is undoubtedly affected, and probably moreso the older she gets. She continues to be a generally happy kid, but she definitely shows a need to be given a lot of security.

I easily forget to write about myself.... I'm trying to do normal things again. I joined our church choir, I go to MOPS (Mothers of Preschoolers), I scrapbook, I go to the gym to workout. Although these are all "normal" things for a young mom to do, my life remains far from normal. I'm attempting to be two parents at the same time. Brent commented the other night, as I was rough-housing Madeline on the floor, that I was doing Daddy's job. I've learned to do a lot of things at the same time, I've learned to carry a lot of grocery bags, luggage, laundry, toys, whatever, all while corralling and sometimes also carrying a squirmy two year old. (After not lifting weights for a couple of years, I was shocked at the gym to learn how much stronger I am now than I ever was while I was "in shape.")

I find it almost humorous when people ask me if I work. I work 'round the clock, and yes it is exhausting!! That's why sometimes I forget to reply to email, I forget to call people, I forget important birthdays. My house is far from clean and sometimes the grass doesn't get mowed. I've learned to prioritize and do what's urgent and what's most important for my family, while taking some time to do things for myself, because I really have learned that I can't be a decent caregiver unless I do take care of myself.

I'll be sure to update after Brent's meeting with the orthopedic doctor. Check out our new picture page....

Heather

Saturday, October 1, 2005 0:30 AM CDT

If you've read the guestbook, you've already heard that this is a big weekend for us. Yesterday, Sept. 30, was our 5th Anniversary. We went up to Duluth on Thursday, stayed in a nice suite in Canal Park, and drove further north to Ely and Two Harbors on Friday. The fall colors are absolutely beautiful right now! Madeline spent the night with her friends Corene and Ava (and their parents, Matt and Jenny) while we spent much needed time alone together.

My aunt, Evonne, made reference in the guestbook to our tree. We had an outdoor wedding on my parents' farm, and instead of a unity candle, we planted an oak tree in their yard to symbolize our marriage. Every fall we go back there and take a picture with our tree with me in my wedding dress. I was up there last weekend and took the pictures with Madeline, but without Brent -- he wasn't able to come with this time. Hopefully we can get a chance to get that picture sometime before winter!

Today, Saturday, is Madeline's 2nd birthday. Actually, it was about exactly two years ago right now that she was born -- at 1:08 am. I had a long labor, but I'll spare you all the details. In the end we were glad she has her own birthday -- not the same day as our anniversary. We have a family party on Sunday -- Elmo themed, of course. I've been talking to Madeline about how her birthday is coming up, and I've been attempting to teach her that she's two. The other day I asked her, "How old is Madeline?" She said, "six!"

Today also is my 5 year college reunion at Northwestern College in Roseville, MN. I'm looking forward to seeing some friends I haven't seen in a while.

Brent is doing relatively well. His rash is under control with the changes in his drug levels and light treatments. His hip continues to be bothersome, but overall slightly improved, he thinks. He has emotional ups and downs, as is completely expected with everything he's been through, but he had a great time up north and we were both surprised at how well his energy held up. We're hoping he holds up through Madeline's birthday party on Sunday. He still has more bad days than good days, but we look forward to the time when that will reverse and the good will outweigh the bad.

We are thankful for each other and for Madeline this weekend.

Heather

Wednesday, September 21, 2005 9:41 AM CDT

Brent's rash is stable, and the treatment plan is still very manageable. His prednisone has been increased slightly to 20 mg/day. His light treatments are back to 3 days/week, and he's using topical steroid creams on his skin. Since the rash was caught early, it should be controlled by these treatments.

He's in Rochester until tomorrow.

Heather

Monday, September 19, 2005 12:04 AM CDT

Brent's rash has started to come back. We are waiting to hear from the doctors about their recommendations, and we're hoping that since it is still in the early stages they can prevent it from advancing as far as it did last time. Please pray in that direction!

I'll write more when I know more.

Heather

Friday, September 16, 2005 12:37 AM CDT

Brent has now officially moved home. Now we're adjusting back to being a family again. We haven't all lived together consistently in our own home for many months now.

We're attempting to make life as normal as possible. Our kitchen remodel, which believe it or not is more fun than stressful, is coming along nicely. We're eating lots of microwavable food and using up our stash of paper and plastic dishes until the kitchen is finished.

Brent's hip continues to bother him quite a bit, so he's still using a lot of pain medications. Aside from this issue, though, he's doing very well.

Heather

Thursday, September 8, 2005 11:28 AM CDT

Here's the update on Brent's appointments this week:

Tuesday we saw the orthopedist, and he extended Brent's time on crutches to three more months. We kind of expected this, since Brent's hip pain has continued and hasn't improved at all. After three months they will do another MRI to see if there is improvement/healing in the bone. We were able to see his current MRI, and it was helpful in understanding exactly what's going on in the bone. Basically, his bone is still shaped normally, but some of the top portion of the ball in the hip joint lacks blood supply, so it has started to turn a darker color and is susceptible to collapse if Brent puts too much weight on it while it's attempting to heal. There is still a possiblity that the bone could regenerate itself and return to normal, so that's what we're hoping and praying for. Both the veins and arteries in that area have been blocked, likely by prednisone use, so there is a buildup of pressure in the bone, causing the pain. Bones don't swell, rather pressure builds up, but it's the same principle as swelling -- the body is attempting to heal itself.

During these three months, pain management will be the major thing to deal with. They want him to try to cut back to more moderate pain meds. If the pain becomes worse, there is a fairly simple surgery they may try to help with pain. (Core decompression surgery.) This wouldn't actually help the bone get better, but it may provide pain relief, but there's no guarantee about that, either.

They feel Brent is too young for hip replacement because artificial joints aren't known to last a lifetime, and doing a second replacement later in life would likely not be as successful, either. So for know, they want to do all they can to preserve his own natural joint.

Again, we're playing the waiting game, and we're praying that God will restore his hip to full health so we don't even have to consider these other options.

The great news of the week is that Brent's light treatments are now reduced to twice a week, so he gets to move home!!!!! He'll be coming down Tuesday, getting UVA treatment, seeing the doctor,spending the night, having treatment again in the morning, and returning home Wednesday each week. We're so thankful that hopefully life can return to a much more normal state for the Carlson family! The thought of using crutches doesn't seem so bad in light of the fact that he gets to come home.

Everything else is looking good for Brent from the hematologist's standpoint, so we're going home with his blessing. He said he obviously can't guarantee that nothing else will go wrong, but he feels that further complications are less likely at this point. Praise God!

We don't have enough car space to move all Brent's stuff home today, so when he comes back next week with one of his parents they'll move him out of the transplant house.

Heather

Monday, September 5, 2005 12:20 AM CDT

We had a nice weekend at home together as a family, and we'll all be headed back to Rochester today with my mom along to help with Madeline. Lee and Fern are taking a car trip with friends this week -- much needed time away.

This is a good week for me to be in Rochester, anyway, as we have many appointments with various doctors.

Tuesday we'll see the orthopedist, who will hopefully give us a clearer picture of what to expect with Brent's osteonecrosis/hip situation.

Wednesday we see the dermatologist in charge of Brent's light treatments. We're hoping that she'll decrease the frequency again, since these treatments are what's keeping Brent in Rochester so consistently. He's currently going four days a week, so we're hoping that can be decreased. His skin is about completely healed, but with his tapering off steroids, we anticipate that they won't be too aggressive in cutting the light treatments. Steroids and light are what keep the GVHD from flaring.

Wednesday we'll also have his weekly meeting with Dr. Litzow, his primary hematologist. I actually miss seeing him on a regular basis since coming back home. We really have the best doctor and nurses -- I'm so thankful for them. Even when I'm at home, I have easy access to them at any time I have questions, so it will be good to see them again. They've become somewhat of a family to us in Rochester.

Brent is still having quite a bit of pain in his hip and some nausea, as well. Pray that this will improve. Pray for wisdom for the doctors who will see him this week. Pray that Madeline will be content and have a great time with Grandma Betty. They'll be staying together in a hotel while I stay with Brent at the Transplant House.

We'll be coming home again on Thursday, and I'll be sure to update this week with any important news.

God Bless!
Heather

Sunday, August 28, 2005 6:29 PM CDT

Brent was finally well enough to spend a weekend at the cabin with his parents. Madeline and I stayed home because she has yet another cold. I haven't talked much with Brent yet about the weekend, but I know it was great for him to be up there.

He did stop by here on Thursday night for a bit and we actually had a pretty normal date -- flowers and dinner at Olive Garden.

His pain has been better this past week, so pray that continues. He'll be headed back tomorrow to Rochester.

Here at home, we're starting a kitchen remodel this week. We've wanted to do this for quite some time, and now it's happening. It will be so nice to have a more functional kitchen to enjoy together when Brent finally comes home for good. And the planning of it has been a great distraction for me. I love this kind of stuff....

Another blessing we've received is that Brent was chosen to receive a grant to stay at the transplant house free of charge for as long as he needs. A family of a past transplant patient has a grant for patients like Brent, who have extended stays. Praise God!

Heather

Sunday, August 21, 2005 10:31 PM CDT

Brent was able to be home for the weekend. It was great to have him here, but he did have a lot of nausea and hip pain, so he wasn't able to enjoy his time as much as he'd hoped.

We did get to go to his sister's house on Friday evening, and he enjoyed watching the kids play. Today two of his high school/college friends, Aaron and Charlie, came to visit.

He returned to Rochester tonight with his dad. Please pray fervently that his hip pain will be relieved soon. It did seem better after a nap today, but it really fluctuates a lot, for no apparent reason, which I understand is "normal."

Heather

Tuesday, August 16, 2005 1:37 PM CDT

Brent is continuing to do very well. He's in Rochester with his mother, and I hear she's cooking good food for him!

His antibiotics will end this Thursday, and he's hoping to come home for the weekend. Hopefully this will be the first many weekends he can come home. He currently has light treatment Monday - Thursday each week, so he is free to leave after treatment on Thursday morning.

He's getting used to using the walker/wheelchair. He'll be using them into October.

That's all for now -- pray for continued improvement!!

Heather

Wednesday, August 10, 2005 6:46 PM CDT

Two updates in one day -- wow! Check journal history if you missed the first.

I forgot to mention this morning that yesterday's heart test came back completely normal. Praise God!!

The orthopedists stopped by briefly this afternoon and told Brent that his osteonecrosis is not very far advanced -- I don't think any bone has actually disappeared yet. The blood supply is compromised, but this has the potential to reverse if Brent stays off his legs for a while. So -- he's been ordered to be on crutches for 8 weeks. There is a possibility that his bone could heal in that time, so that's what we're praying for.

Madeline and I will be heading home tomorrow, and Brent will likely be out of the hospital soon, but staying in Rochester at the transplant house with one of his parents. His course of antibiotics is 14 days, and today is day 6, I believe.

Check journal history for the address for the transplant house if you're interested in sending any mail to Brent. He is in room 13.

For those of you from my home, I just visited Chuck Hendrickson today. He's also here at Mayo with leukemia.

Thanks for all your prayers, yet again, and now I beg for more prayer regarding Brent's bone disease.

Heather

Wednesday, August 10, 2005 8:16 AM CDT

The next curveball we're dealing with now is a newly diagnosed bone disease in Brent's hips -- osteonecrosis. We don't know much yet, as we haven't talked to the orthopedists regarding their suggestions for treatment. What we do know is that it was caused by long-term steroid therapy use (prednisone).

I did a quick internet search, and what I understand is that osteonecrosis is degeneration of bone cells in the head of the femur bone (in Brent's case -- it can affect other joints, as well.) The cells start to die because of lack of blood supply. We don't know what stage his is, although I understand that in the right hip some change of shape of the bone has started to occur.

Treatment options, although I don't know specifically what they'll consider for Brent, include pain management, bone grafting, use of crutches to reduce weight-bearing, and ultimately hip replacement.

Brent's not too excited about this new diagnosis. He is so looking forward to being done with this disease stuff, and we're hoping that this bone disease doesn't further disable him in the long term.

Otherwise, he seems to be continuing to improve, which is great news!! Continue to pray for wisdom for yet another group of doctors -- the orthopedists. Pray also for pain reduction and healing of this disease in Brent's hips.

Heather

Tuesday, August 9, 2005 11:13 AM CDT

Brent seems to be improving quite a bit. Although we don't have proof yet via bloodwork that the infection has been reduced, his symptoms are decreasing and his comfort level is much higher. He spent some time in the family room yesterday and took a couple of short walks.

One of his biggest complaints right now is a very sore hip. Orthopedics has looked at him and they are trying to figure out what is causing Brent's pain.

Madeline is down here again and seems to be doing okay so far. She and I will probably go back to Hawthorn Suites (now it's called Heritage Suites, actually) today for a couple of nights until I feel confident going home.

Thank you all for your encouragement and prayers. This really is a long battle. Much longer than we expected.

I talked with one of our primary nurses, Teresa, this morning, and she assured me that these setbacks, as miserable as they are, are not life-threatening at this point.

She also said that realistically, we can expect the first year to be hard. I guess that's not what we want to hear, but good to know that he's not out of the ordinary, anyway.

Brent is currently having his heart looked at through a scope down his throat. It's standard procedure to do this with staph patients, because the infection has the potential to settle in the heart chambers. He's not showing any indications of that, but like I said, it's routine to do this test.

That's all for today.

Heather

Sunday, August 7, 2005 10:53 AM CDT

About an hour after I wrote the update last night (check journal history if you missed it), Brent was admitted to the hospital again. We went in for his evening dose of vancomycin, and as we were driving there he started having chills again. This was one symptom they told him to watch for, so we called the BMT unit, and he was admitted.

He also has tested positive for C.difficile, an intestinal bacteria causing diarrhea, fever, chills, and stomach pains. Treatment is yet another antibiotic. C. diff actually is most often caused by use of antibiotics, because the healthy flora in the gut gets out of balance, causing the c.diff bacteria to flare. Many healthy people carry C.diff but are unaffected until antibiotic usage or immunosuppression and/or additional exposure to c.diff occur.

Brent is losing strength quickly from last night to today. He barely opens his eyes and only gets up to use the bathroom.

More blood cultures have been drawn, but we won't get results until tomorrow, probably, as is the nature of cultures. The purpose of the cultures is to see if the antibiotic treatments have caused an improvement in the infection. They may also show if the staph is resistant to any particular antibiotics, which would help them better treat Brent.

As I've mentioned recently, Brent is discouraged. He hardly talks, and when he does, he speaks of wanting to be done with this. It's so hard to hear him talk like that, but I know he truly is miserable right now. Pray for encouragement for all of us, as this really is a scary experience... It's hard to imagine what God's plan is in all of this, but we have to keep an eternal perspective and try to understand that we may never understand "why," this side of heaven, that is.

Madeline knows where I am, and seems okay with being away from me right now. I talked to her on the phone this morning -- yes, I can have a conversation with her on the phone now!! Brent feels like he's missed out so much on her growing up this summer. He can hardly believe the stories I tell him about the things she's doing and saying.

For those of you familiar with her very picky eating habits, you'll be shocked to learn that she ate SUPREME PIZZA for supper last night!! I guess Ryan and Laura must have some sort of tricks up their sleeves to get her to eat a combination food. Usually she squabbles if I put two different things on her plate and they're touching each other, much less actually cooked together intentionally!

I am here alone with Brent for now, but I don't feel alone. The hospital staff has become a family of sorts, and I'm still in close contact with our families at home. Thank you for continuing to pray fervently. Check back frequently -- I will update when we have more test results and news.

Heather

Saturday, August 6, 2005 7:52 PM CDT

Today they determined that Brent has a more severe form of staph infection. The exact title is "gram positive coccus resembling staphylococcus."

As of now, his treatment remains the same -- outpatient IV's twice a day. He will be having several more tests, starting tomorrow. They will do bloodwork again to see if the infection has improved. Monday they will look at his heart (via his throat) because this particular type of staph can potentially be damaging to organs, especially the heart.

How serious is this? It can be potentially very serious. The tests done tomorrow and Monday will tell us more -- if the infection has responded to antibiotics at all. It is in his bloodstream, which increases its severity and risk.

Brent feels really "ishy," as he describes it. He has little appetite, no energy, some nausea and upset stomach, and general achiness. He sleeps many hours a day.

I came down to Rochester today and was surprised by how sick Brent is. On the phone he sounded better than he really is. We are all nervous about how this could possibly progess, and we are praying for healing!!

Pray for comfort and healing for Brent. Pray for wisdom for his doctors. Pray for strength and wisdom for me, his caregiver. It's always an adjustment to change caregivers, because I haven't seen him in several days, so I'm not sure what his "good" and "bad" look like.

Madeline is at home with Ryan and Laura (my brother and his wife) for the weekend. I'm planning to go back home on Monday, depending on how things go here.

We covet your prayers this weekend...

Love,
Heather

Friday, August 5, 2005 11:05 AM CDT

Good news and bad news:

The good news is that the dermatologist has cut back on Brent's light treatments because his skin has healed so well. He was planning to come home for the weekend, actually, and maybe even go watch the Vikings' training camp practices in Mankato...

The bad news is that he has developed a systemic staff infection and now needs IV antibiotics twice a day for 7-10 days. He will be able to stay outpatient for this treatment as long as the infection doesn't progress any further. Although staff can be very serious, they feel that he has a strain that will likely respond well to the aggressive therapy they're starting this morning.

Brent is quite discouraged. He wants so badly to come home and to be "normal" again. He misses Madeline like crazy. He was able to visit for a short time this week, but we all want him home to stay.

I have two toddlers crawling on me (Madeline has her friend Jeneva here), so I need to finish!!

Heather

Tuesday, July 26, 2005 7:39 PM CDT

Madeline's latest sentence: "Help with shoes... off feet!!" That's five words, and she's 21 months -- exactly in keeping with how I spoke at her age. (My 5-word, 21-month sentence was "Heather help Mommy sweep floor.") And as you know, I haven't stopped talking since...

Brent is doing much, much better, and we're all in better spirits this week. Madeline and I were in Rochester for about four days, and she had a hard time -- she really needs to be home, so that's where we are now. She's a much happier kid when she's in her own environment, and therefore, I'm a much happier mom!

Later this week Brent will be moving to another location in Rochester -- the Gift of Life Transplant House. We had looked into this option back in April -- it is much more affordable than hotels/apartments. However, they don't allow children to be there, so we chose not to stay there originally. But now our insurance housing benefit has maxed out, and Madeline's tolerance of life in Rochester has also maxed out, so Brent will be moving there, probably for the remainder of the time he needs to be in Rochester. We still don't know exactly how long that will be. He needs to have a caregiver with him all of the time, so likely his parents will take the majority of that responsibility, along with some friends and other family members, but not me and Madeline.

Mayo will be able to help us with the cost of staying at the transplant house, as well as paying for me to come down to stay in a hotel once a week so we can see Brent. Obviously it isn't ideal to have our family split up, but Brent needs to be there, and Madeline needs to be here, so we'll do what needs to be done for the time being.

The transplant house houses up to 48 transplant patients at a time and has common living spaces, kitchen space, laundry, etc. with hotel style rooms to stay in. It's more "institutionalized" than we're used to, so pray that Brent can adjust to a different living environment. I'm hoping he can make some good connections with other patients while he's there.

It really is nice to be home. Mom is here with me for a few days to help me catch up on sleep and some of the things that have fallen behind this summer.

Pray also that Brent continues to improve. He's looking and feeling much better, but is still not "out of the woods", so to speak. This process is long, it is complicated, and it carries a lot of risks. We cling to these times when he's doing well, but we know that there could likely be another set-back in the future. Pray for us to regain strength during this time and to continue to take life day by day, moment by moment. God gives us strength we could never have imagined.

Thank you all who sent packages to us at Hawthorn Suites. Please don't send any more mail there -- Brent will be leaving there on Thursday. For the time being, send things to our home address, and when I know his room number at the Transplant House, I'll post that info.

Here is some information on the Gift of Life House:

http://www.gift-of-life.org/

705 Second Street, SW
Rochester, MN 55902
507-288-7470

Check out the new pictures on the photo album page.

God Bless you all, and thanks again for taking this journey with us.

Love,
Heather, Brent, and Madeline

Monday, July 25, 2005 10:02 PM CDT

Madeline's latest sentence: "Help with shoes... off feet!!" That's five words, and she's 21 months -- exactly in keeping with how I spoke at her age. (My 5-word, 21-month sentence was "Heather help Mommy sweep floor.") And as you know, I haven't stopped talking since...

Brent is doing much, much better, and we're all in better spirits this week. Madeline and I were in Rochester for about four days, and she had a hard time -- she really needs to be home, so that's where we are now. She's a much happier kid when she's in her own environment, and therefore, I'm a much happier mom!

Later this week Brent will be moving to another location in Rochester -- the Gift of Life Transplant House. We had looked into this option back in April -- it is much more affordable than hotels/apartments. However, they don't allow children to be there, so we chose not to stay there originally. But now our insurance housing benefit has maxed out, and Madeline's tolerance of life in Rochester has also maxed out, so Brent will be moving there, probably for the remainder of the time he needs to be in Rochester. We still don't know exactly how long that will be. He needs to have a caregiver with him all of the time, so likely his parents will take the majority of that responsibility, along with some friends and other family members, but not me and Madeline.

Mayo will be able to help us with the cost of staying at the transplant house, as well as paying for me to come down to stay in a hotel once a week so we can see Brent. Obviously it isn't ideal to have our family split up, but Brent needs to be there, and Madeline needs to be here, so we'll do what needs to be done for the time being.

The transplant house houses up to 48 transplant patients at a time and has common living spaces, kitchen space, laundry, etc. with hotel style rooms to stay in. It's more "institutionalized" than we're used to, so pray that Brent can adjust to a different living environment. I'm hoping he can make some good connections with other patients while he's there.

It really is nice to be home. Mom is here with me for a few days to help me catch up on sleep and some of the things that have fallen behind this summer.

Pray also that Brent continues to improve. He's looking and feeling much better, but is still not "out of the woods", so to speak. This process is long, it is complicated, and it carries a lot of risks. We cling to these times when he's doing well, but we know that there could likely be another set-back in the future. Pray for us to regain strength during this time and to continue to take life day by day, moment by moment. God gives us strength we could never have imagined.

Thank you all who sent packages to us at Hawthorn Suites. Please don't send any more mail there -- Brent will be leaving there on Thursday. For the time being, send things to our home address, and when I know his room number at the Transplant House, I'll post that info.

Check out the new pictures on the photo album page.

God Bless you all, and thanks again for taking this journey with us.

Love,
Heather, Brent, and Madeline

Saturday, July 16, 2005 2:09 PM CDT

My predominant feeling right now is exhaustion. Caregiving, although it's exactly what I want to be doing right now given this situation, is very draining, both emotionally and physically. It's so hard to see someone I love so much going through such pain and misery. This recovery is much longer and more intense than both of us anticipated. This past week I didn't get much sleep at all, for one reason or another.

I'm at home to rest for a few days. His parents have been wonderful help to us down in Rochester, and now this weekend they're home resting, as well. Brent's sister and her family as well as our friend Steve are with Brent for now.

This week we enlisted the help of home health to manage Brent's medications. The final straw was when I accidently gave him the wrong dosage of his blood thinner and he ended up with dangerously thin blood. I felt horrible, and the doctors/nurses assured me that he'd be okay, but at that point, I very willingly let the nurse step in to set up his meds on a weekly basis. His regimen is so complicated - drugs are being changed all the time, especially recently.

They are experimenting with several different medications to help counteract the prednisone and get him on a normal sleep pattern again. He has been sleeping only a short time each night for about two months now. I was pretty excited yesterday when the psychiatrist managing the sleep meds recommended Brent start drinking caffeinated beverages in order to avoid napping during the day. Permission to go to Starbucks is just what I needed!

Brent has also been having some pretty intense pain, especially at night. The bones in his legs ache consistently, but then shooting pains come periodically, which get quite severe at times.

Madeline is also becoming harder to manage through this. She does really well with all of her grandparents, aunts/uncles, etc., but as soon as I come back, she's incredibly clingy -- afraid I'll leave again. She's having a hard time sleeping well (but last night at home she slept perfectly).

Brent is feeling discouraged -- so ready to be done with all of this. Like I said, this is so much worse than he expected it would be. He is lonely in Rochester and has a hard time seeing the rest of us come and go.

I'm hoping to return to Rochester with some fresh energy sometime next week.

The cards, letters, packages, etc. have been so encouraging. We love our guestbook here, as well, although getting something tangible in the mail is nice too!

Thank you all for taking this long journey with us. We certainly couldn't do it with all the support, prayers, and help from all of you. I need to also publicly thank my neighbor Joyce for all her hard work on our yard. I always come home to find it perfectly groomed!

Heather

Monday, July 11, 2005 9:24 PM CDT

Brent is doing so much better and was discharged today. We had a big meeting this morning with his doctors from different departments, nurses, and a social worker. It was good to get everyone's input at the same time.

We're still at Hawthorne Suites, enjoying the big breakfasts and fun pool.

The "plan" (that's always subject to change) is that Brent's light treatments will continue at 5-6 times per week for at least another month, so we'll be in Rochester at least until the middle of August.

Thanks for all the cards and fun packages!!

Heather

Thursday, July 7, 2005 10:21 AM CDT

Brent was hospitalized last night again. After his clinic visit yesterday, it was decided that he needs closer observation of his complicated medications. He's having some unpleasant reactions and some of his blood levels were way off. The doctors aren't sure why, so they want to watch him more closely to make sure nothing is brewing in his body. Among other things, his blood has been very thin, and this creates dangers of bleeding.

Brent's sister Becky is down here with me now, and I'll be going to get Madeline today -- she's been with my parents since Monday, and she's finally well.

Pray for peace and sleep for Brent. I can't describe how hard these last weeks have been. Although his skin has healed tremendously, there are still big hurdles to get over.

Heather

Wednesday, June 29, 2005 6:54 AM CDT

The last couple days have truly been a relief! I have actually been able to sit down on the pot. Don't let your mind wonder to much on that. I am walking better and my swelling is going down more. I was 265 over a month ago and down to 210 today. Talk about stretchy guy!

I am working with the Pain Clinic down here and they are doing a great job getting me transitioned to a drug that doesn't make you doppy but rids the pain!

I love my wife and daughter so much and miss them immensely! I haven't seen Madeline in over a week and Heather for almost a week. Madeline has a cold and they are now stuck at home until she gets better. Its really stressing all of us out! Please pray that she is healed of this cold. I miss them so much!!!

We are now relocated at nicer living location that Madeline will truly enjoy. It has a "POOL", yahoo!

We are, or, at least I am looking for some tender love and care. Care packages(I like minty things and Heather likes cheesy cakey things), back rubs, bald head finger painting, smoked venison(nummmm....)

Hawthorn Suites:
2829 43rd Street NW
Rochester, MN 55901
507-281-1200
Room: 307

Brent

Sunday, June 26, 2005 3:16 PM CDT

Hi everyone, from the previously "in immense pain elephant man!"

The GVH rash just took over the skin, looked horrifying, and the pain was overpowering. The doctors explained that they haven't seen a case this severe in recent years at Mayo.

Today: Feeling much better and actually sitting somewhat comfortably in a chair.

Well, thank all mighty God I am seeing the light at the end of this experience. Thank you for your prayers and to our families for supporting us through another battle down this transplant road.

We are, or, at least I am looking for some tender love and care. Care packages(I like minty things and Heather likes cheesy cakey things), back rubs, bald head finger painting, smoked venison(nummmm....)

Brent

Thursday, June 23, 2005 8:51 PM CDT

I realize it's been five days since I last wrote, and things have improved dramatically. Brent left the hospital today. He's still in Rochester, and will be for a while, but we're so happy he's well enough to be an outpatient now.

He's with his parents back at our previous apartment building. I'm heading home to Abercrombie this weekend for a wedding and to pick up Madeline -- she's been with Grandma Betty and Grandpa Eldon this week. They've all had a blast, and I've gotten lots of rest!!

Brent's rash and pain have both improved, so now he's staying in Rochester primarily to receive UVA treatments 4-5 times a week, as well as seeing the doctor a couple of times a week.

They feel the GVH has come under control and are hoping that in the future they can stop a flare-up before it gets as bad as this one. One of his doctors yesterday said that he's among the worst cases of GVH she'd seen in several years, so we're thankful they did get it under control.

For those of you in Minnesota, enjoy this heat! I love it, actually...

Heather

Saturday, June 18, 2005 1:41 PM CDT

The biopsy of Brent's colon was inconclusive, but they are still strongly suspecting GVH in his gut, and they have begun treating accordingly. The only change in his meds is an additional antibiotic - cipro.

Brent's pain is still horrible, so last night they switched him to patient-controlled pain medication. He receives the pain meds continuously and is given an allotted number of extra "pushes" of pain meds each hour to help when he needs to move around, etc.

Madeline is going home with Grandma Betty and Grandpa Eldon tomorrow for the week. If anyone up there in ND is looking for a play-date next week, call Betty! Madeline's quite the socialite.

Madeline spoke her first four word sentence yesterday. From across the hospital cafeteria, she said, "Daddy, I'm drinking milk!" She also learned how to open the heavy hotel room door, and almost escaped from Grandma Betty. We now know to use the deadbolt at all times!

Again, thank you all for all your guestbook entries, emails, and tangible help. We are very grateful for everything.

Happy Fathers' Day tomorrow.

Heather

Thursday, June 16, 2005 3:53 PM CDT

Brent is doing better -- the rash is improving somewhat. Although Brent is still in a lot of pain, he does feel improvement, so he's feeling positive.

He was moved yesterday to a bigger room with a bathtub, and that's been a big help.

We're waiting on results from a biopsy to see if GVH is in his gut.

This time I'm staying in a hotel with my mom and Madeline, and Madeline's loving the pool and the elevators.

Heather

Tuesday, June 14, 2005 4:54 PM CDT

Brent continues to be in a lot of pain, but we feel it's being managed well.

The goal of this hospitalization is to get the GVH under control again, so they are making some changes in his drugs, as well as increasing pain medication so he can tolerate the pain while the rash is still raging.

I wish I could adequately explain how awful this rash is, but I don't know how without being overly graphic. Just know that he is rating his pain (on a scale of 1-10) between 5's and 12's depending on when you ask him. Today seems to be better because of the increase in pain meds. His entire body is covered with the rash, and the closest thing I can think of to describe his appearance is that he looks like a severe burn victim. He has difficulty moving around because his skin tightens very quickly.

Because of his persistent diarhhea, they still suspect gut involvement in the GVH, which is never good.

Heather

Sunday, June 12, 2005 11:13 PM CDT

Lee and I are taking Brent back to Mayo tonight. His pain level is at the point where he can't handle being home anymore. There's also a concern that his gut is now possibly getting involved in the GVH.

We'll have more info soon, hopefully. For now pray for comfort for Brent, rest for all of us, and some measure of understanding for Madeline. She's sleeping at Grandma Fern's tonight, and last I heard, she was upset and confused about what's going on.

I'm relieved that he'll be getting professional care -- it's been more than I can handle this week with the increasing pain.

Heather

Tuesday, June 7, 2005 10:42 PM CDT

Brent had another visit to Mayo today. His GVH continues to get worse, which is concerning to the doctors. He'll start UV light therapy this week at Park Nicollet here in Minneapolis. Mayo has agreed to work in conjunction with Park Nicollet in order to avoid us moving back to Rochester for these treatments. We think he'll have three light therapy treatments each week, in addition to one or two trips to Rochester. Their hope is that the light therapy will get the rash under control. So far the steroid creams haven't been able to control it like they want.

Also today Brent had his Hickman catheter removed-- The Hickman is the central line that all IV's and blood draws were administered through. As it was being removed it became apparent that it was quite infected. They sent a sample of the pus to the lab, looking for a specific infection. In the meantime, we watch Brent carefully for other signs of infection.

Brent is discouraged that he's not improving. He still has a lot of pain and general discomfort. The prednisone is keeping him up at night, yet he's tired all day.

I'm learning how to juggle a lot of things. Starbucks is my best friend these days, along with adrenaline. No, God truly is giving me strength I didn't know I had to accomplish an awful lot during each day.

We try to get out a little each day, and Sunday we went to church for the first time since transplant. It was amazing to be back at our own church again.

Brent set a goal for himself a few weeks ago to be home for his birthday, and he will be!! He turns 34 on Saturday, and we're so glad to be home to celebrate.

Pray for peace and comfort and strength for all of us. This is harder than we expected, as Brent said in the last journal.

Heather

Thursday, June 2, 2005 4:11 AM CDT

Thanks you to everyone for all your prayers, cards and support of us while we were in Rochester. The process was easily ten times worse then anything I would have imagined. It was God's grace and comfort that got me through it!

We have been home now for a week and enjoying the peace of home. Madeline jumped right back in and is also enjoying seeing all her toys again and having mommy and daddy to herself. I am feeling much better the last few days and able finally to spend time with Madeline which I have missed doing so much. She is a little gem and I am amazed how she has survived through all this. She constantly is worried about daddy and looks at my horrible rash on my body from the GVH disease and knows I am in pain.

Well the rash is spreading and also getting more comfortable at the same time. The doctors think it will resolve itself relatively soon. My counts are looking good and they have confirmed I am 100% donor cells. My blood type has changed from A+ to O+. Very incredible! I see the Doctor on Friday and hopefully he takes me down on the prednisone so I am not writting journals at 4:11am in the mornings.

This next year will be very high risk time for my body where I will really be week to week on potential new hazards. Please stay on board, I know I can't do this alone. Large risks of the leukemia coming back, infections and CMV virus given to me by my donor and GVH disease issues continuing!

Brent, Heather and Madeline!

Keep the uplifting jokes and family stories coming! We need as much positive support as we can get!

Thursday, May 26, 2005 9:32 PM CDT

We're going home tomorrow and leaving our apartment here in Rochester.

Brent's condition has stayed pretty much the same, although the rash has spread to his legs. Dr. Litzow decided to increase the prednisone in hopes that it will help get the GVH under control, and he's optimistic that it will improve relatively soon.

We'll be back to Mayo twice a week for a while, but that's fine -- it will feel really good to sleep in our own bed!!

Heather

Tuesday, May 24, 2005 9:51 PM CDT

Brent's rash continues to be very painful. He is doing his skin treatments at our place, but it still consumes most of his day. He generally has a couple hours each day where he feels comfortable enough to do something like go for a walk, etc., but most of his time is spent caring for and tolerating his skin.

He can't decide if the treatments are helping -- sometimes the skin seems to be improving, but other times it seems the same or a little worse. Recently his feet have started to be affected, as well.

This week we're seeing the doctor only twice, and he's told us that we could possibly go home this weekend!!! Although Brent's skin is still not well, by any means, it's not critical, so as long as we're willing to drive down here twice a week for a while, we can possibly go home!!!

This all depends on how things progress between now and Thursday, but if things continue to go as they have been recently, we're good to go. Dr. Litzow said that in the big picture, Brent's doing really well. He feels awful, but overall his condition is good.

Praise God!!

Heather

Thursday, May 19, 2005 11:08 PM CDT

Brent has developed a very uncomfortable rash on his hands, chest, face, and back. It came on slowly, but intensified in the last couple of days. Both the BMT doctors and dermatologists think it's likely graft vs. host, but they're testing to be sure.

In the meantime, he will have at least two wet dressing treatments each day for the next few days until the burning and blistering gets better. These treatments are in an outpatient unit of the hospital for the time being, and each one takes 2 hours. Very time consuming, so hopefully the results will come quickly.

Pray for comfort for Brent. He is extremely miserable with this rash -- it especially affects the palms of his hands, so much that he can't grasp much of anything, open water bottles, or tolerate any weight or impact to his hands.

We have had help from Brent's aunt and cousin this week, and our parents are returning this weekend. (Lee, Fern, and Betty).

Brent is feeling very sick of being sick, and understandably so. Continue to pray for endurance for him. We knew this would be a long road, but until living it, we didn't know how hard it would actually be.

Madeline is still our bright spot. She's learning and growing so fast -- new words every day. She asks a lot about "Dada," and especially has a hard time going to sleep until she knows where he is and that he's staying with us. She watches me preparing his meds and says "Dada". We walk by the hospital, she says, "Dada." She's very aware that something's going on with Dada, it's just hard for her little mind to figure it all out, I think.

Pray for Madeline. Her life has been so far from normal from the very beginning. Pray for us, as parents, too. She is a unique child that undoubtedly has needs that are far from typical, as well as typical needs of a toddler.

Pray for energy for me and discernment regarding how to split my energy between Brent and Madeline. Both require a lot, and both are extremely important. I think I'm beginning to find a balance, and Madeline is becoming helpful -- she can bring the jello to Dada, for example. It is a daily dilemma, however -- figuring out how to spend my time.

That's all for tonight. I'll update when I know more.

Heather

Monday, May 16, 2005 7:57 PM CDT

I apologize for the long time it's been since the last update. Brent continues to improve overall. He has some persistent nausea, but generally speaking, he's doing incredibly well.

Today is Day +24, and we had our first visit to the clinic today, not the hospital! This is an important milestone in treatment here at Mayo. As long as the patient requires daily monitoring, they return each day to the BMT unit of the hospital for outpatient treatment. Once things stabilize, the patient doesn't need to be seen every day, and then treatment switches to the clinic where they see their primary Mayo doctor. For now, we'll see Dr. Litzow about every other day.
: 0 )

Brent has lost all of the 40 pounds of fluid he gained while in ICU two weeks ago, plus he's lost 10 more pounds. He is looking so much better and he's starting to get out a little bit. We've been out to eat a couple of times in the last few days, and we even took Madeline to a hotel pool this weekend.

If I'm slow again in updating, assume the best. I tend to update much more frequently when he's NOT doing well than when he is!

Tell us what's going on in your lives -- ours are actually kind of dull for the moment, so give us some good stories.

Heather

Monday, May 9, 2005 3:42 PM CDT

Brent is out of the hospital and back at our apartment! He has had passes to come out for a few hours at a time this weekend, but now he's been discharged to outpatient care again. He's very happy to be home -- away from the hospital, anyway.

Brent's counts are all looking good and getting closer to normal. We're very optimistic and hoping he's done being hospitalized, but the possibility still exists for further complications. We're happy that he's doing well now. We are learning how to live day to day, moment to moment.

We're having a few days to ourselves this week: my good friend Jenny just came down to get Madeline, and she's going to stay with them until Thursday. She'll love playing with Corene and Ava. I think Mommy and Daddy will miss her a lot, but we'll also get lots of good rest and time together. We packed up her bed and her Elmo in Jenny's jeep, and off she went, back to Robbinsdale.

We are so thankful to have had so much help here in Rochester. Lee, Fern, Becky, Betty, Erin, Ryan, Chris, Barb, and most recently Ted and Jill... we have amazing friends and family!

Heather, Brent, and Madeline

Friday, May 6, 2005 1:21 PM CDT

Brent continues to improve each day. I don't think I made myself clear earlier in the week, but he was moved out of ICU on Tuesday evening.

He's spending more time without oxygen and is gaining strength and able to move a little more on his own. He is without any catheters, IV's, etc. except for short periods of time when the IV antibiotics need to be given.

We're encouraged to see him in much better spirits today -- he had become quite discouraged throughout the week, but he seems to be better as his condition improves.

Heather

Wednesday, May 4, 2005 11:20 PM CDT

It appears that the new stem cells are engrafting! Brent's WBC counts have been up significantly for two days now. The BMT doctors say this is a little early, but they're pretty sure that's what's happening. Praise God! Now hopefully he can have some immunity within himself to help heal his body.

Brent continues to be very,very weak. He lost so much strength during his battle on Sunday and Monday, and at the same time, he gained 40 pounds of fluid. The doctors' primary goals right now are to get the fluid off and to regain proper kidney function. He is completely exhausted - barely able to stay awake for even short conversations.

We took a walk around the unit tonight. Brent used a podium walker and had help on each side, while Fern and I walked behind. His nurse said it was a very good first walk. Seeing such a strong man be so weak is heartbreaking for us. We do what needs to be done, yet emotionally, it's wrenching to see him in such poor condition.

Pray for endurance for all of us and for peace, especially for Brent.

Heather

Tuesday, May 3, 2005 3:07 PM CDT

I'm happy to say that Brent is doing much better today. He is off of oxygen now, still with somewhat labored breathing, but much better than what it was.

His kidney function continues to improve. The kidney doctors told us this morning that Brent's kidneys had shut down for a period of time, but they are now recovering. He is beginning to lose some of the fluid, although he is still very bloated.

If his CT scan this afternoon comes back clear, he will probably leave ICU and move back to the BMT unit. He is extremely sleep deprived and weak, so we're hoping he can return to the quieter atmosphere at BMT and get some rest.

The source of infection is still unknown, but his condition is improving, so the antibiotics must be working.

Heather

Monday, May 2, 2005 11:39 PM CDT

Brent remains critically ill (exactly as his nurse stated) in ICU. The conclusion that was reached by all his doctors (from Bone Marrow Transplant, ICU and Infectious Disease) is that Brent likely has bacterial sepsis - a bacterial infection of the blood. Although this is somewhat expected with BMT patients, it is still very serious. The cause/source of infection is often not found in BMT patients, so they treat aggressively in order to cover him.

Shortly before I left tonight, Brent's condition changed. Although his blood pressure has returned to normal WITHOUT any meds and his kidney function is improving, he is having increased respiratory distress. He's been on an oxygen mask for two days, but is still having considerable problems. His rate of breathing is way too fast, and his blood gas levels are out of whack which is also causing metabolic change, which means his other body functions are attempting to compensate for the lack of good oxygen in his blood.

He was put on a different mask before I left in an attempt to regulate his body chemistry through more efficient breathing.

His nurse assured me that although this is very serious, it could be much worse. She also said that recovery is slow in Brent's condition.

Thank you all so much for your postings, emails, cards, and most of all prayers. Continue to storm heaven on Brent's behalf.

Heather

Monday, May 2, 2005 11:27 AM CDT

Brent is now in ICU. Around 3 this morning his blood pressure dropped dangerously low. After attempting to raise it with fluids, it still remained very low, so they transferred him upstairs around 5:00. Lee and I were both there at the time.

In ICU they have him extremely closely monitored -- he now has all kinds of wires and tubes measuring just about every function. He is also on medication to raise the blood pressure, and it has gone up significantly since starting the meds a few hours ago.

At this point, the doctors suspect infection, which would cause the blood pressure to drop, which in turn causes the kidney problems and breathing difficulties.

Brent is being seen by ICU docs, Bone Marrow docs, and today will also see someone from infectious disease. The hope is to pinpoint the source of infection ASAP so they can treat correctly. Currently he's on very broad spectrum antibiotics that should cover just about anything.

He is very uncomfortable -- he's been in bed for most of the last three days and he's getting achy. The added monitors and lines don't help his comfort level, either.

None of us have slept much, so pray that we as family stay healthy.

Heather

Sunday, May 1, 2005 8:48 PM CDT

Every day we wake up and have no idea what will happen. Today Brent's fever stayed high throughout the day (over 102 degrees), and his blood pressure remained very low. At the lowest this morning it was 60/40. He also gained over ten pounds of fluid weight in the past day. His skin is appearing very jaundiced and he's having breathing difficulties. Needless to say, he has been admitted to the hospital again. Honestly, this morning was very scary as we watched his condition worsen steadily and quickly. By the afternoon, however, he stablized and he is now breathing better, but still with an oxygen mask.

The doctors are suspecting a liver condition called VOD, but they can't be sure until they watch for a while. They will continue to watch closely and run more tests. In the meantime, we wait again. And we pray. Please pray for resolution of these symptoms and a clear diagnosis so they have a direction with treatment.

The good news is that his white count was up to .4 or 400 today, which shows that the stem cells are possibly engrafting. Again, time will tell.

Lee is staying the night at the hospital and I'm sleeping with my cell phone nearby, just in case...

Pray for peace for all of us. This is a scary time, because VOD can be very serious. Again, we don't know if that's what he's dealing with, but it is a possibility.

My mom is coming back this week to help.

Heather

Saturday, April 30, 2005 10:47 PM CDT

It's another one of those nights where I can't sleep because my mind is racing, so I'll give y'all the update:

Brent had another fever today, this time higher (39.5 C/103.1 F). Again, we went back to the hospital for more antibiotics and blood culture tests. He has also started needing transfusions of platelets. All of these things are expected and "normal," but it still seems scary. Since when is a 103 temp normal??

His nausea and lack of appetite had been getting better over the past two days, but today he was virtually unable to eat and even threw up for the first time (amazingly he hasn't yet until today). However, once he got home this evening he ate a bowl of Italian Sausage Soup (thanks Barb!) and it seemed to go well. The dieticians have him closely counting calories, aiming for 2100 a day, which is very difficult with the nausea he's having. He says the BMT diet is working -- he's lost 10+ pounds. They do worry that he'll lose muscle mass instead of fat, however, so keeping calories up is important.

Today was Day +8, so we're about half done with the dog days (5-12).
I'm kept on my toes all of the time managing his meds, helping him watch for temps, attempting to cook whatever sounds good to him at the moment, taking care of his central line site care, etc., not to mention being mom to Madeline. I am getting tired. I feel as though I've been living on adrenaline for the past month, and I'm starting to feel the crash. We have had amazing help from Brent's parents, who are also staying in our apartment complex. It's nice to be able to take Madeline upstairs for a while so I can nap.

We were told, once again, with an unrelated donor transplant we will be here in Rochester for a minimum of two months after transplant, which means we won't be home until the end of June at the earliest. It seems a long way away, but we're trusting God will help us pass the time quickly.

My Madeline story for this update (I try to end on a positive note!) is this: I was talking with my friend Barb, who's here with her family for the weekend, and suddenly realized that Madeline had gone in the bedroom, grabbed the bag of diapers, brought it into the living room and was attempting to put one on her Elmo doll. (She is absolutely obsessed with Elmo.) I managed to grab the video camera in time, and she pronounced: "Elmo go poopie!" I think we're starting to see a pattern in her topics of conversation!

Heather

Wednesday, April 27, 2005 11:27 PM CDT

Day 5.

Brent got a slight fever this evening and is at the hospital getting outpatient antibiotics. They also did a chest x-ray and blood cultures to look for specific bacteria that could be causing the fever. They assured us that this is completely normal -- nearly all BMT patients end up on antibiotics during these days. We'll have results from the cultures in a couple of days.
We'll now have two visits per day to the hospital while he's on antibiotics.

Madeline and Papa Lee went to the circus this afternoon. Her favorite act was the horses, followed by tigers and elephants.

Heather

Monday, April 25, 2005 9:41 PM CDT

Today was Day +3 and a better day. Since transplant, Brent has had quite a bit of miserable nausea and dehydration. Last night during the night he had severe leg cramps from the dehydration. Gatorade quickly fixed the problem. Today he was able to eat and drink more and is feeling better.
Being at home in our apartment is much more pleasant than the hospital. He had two visits to the unit today to see the docs, get bloodwork done, and get a Methotrexate treatment to control the graft vs. host (GVH).
We're told that Days 5-12 will be the hardest. His counts will be at their lowest and he'll be feeling the delayed effects of chemo, radiation, and the transplant.
Madeline is becoming quite the jabberbox. Her latest sentences include "Papa bye-bye... vroom" (in the car), and "Mommy go poopie." (after I used the bathroom). Sorry if that's too much info for anyone -- I thought it was hilarious!
The hard days are coming... pray for strength and endurance.
Heather

Saturday, April 23, 2005 1:17 AM CDT

Transplant complete!!
The stem cells arrived fresh (not frozen) to the Rochester airport this evening and were transported to the hospital by a courier. They were then rechecked in the labs here before coming up to the unit for infusion. They're carried around and kept cold in a small Igloo cooler -- the kind that typically holds a six-pack.
The cells dripped into Brent's central line from about 11:20-12:30, and now at almost 1:30 I'm back at the apartment and ready to go to bed.
Brent's parents, my mom, Madeline, and I were all there for the transplant. We tried to make a little party out of it with ice cream and balloons. I think Madeline enjoyed it the most -- Brent still feels really nauseated and generally yucky, so he slept most of the evening. They also had him pretty drowsy with medications to help with the nausea and to prevent immediate reactions to the stem cells.
What an amazing process to witness. To think that someone in America is resting tonight, recovering from a donation process that isn't without side effects, either. Praise God for Brent's donor!! I was reminded of how amazing this is when I read right on the bag of cells: "VOLUNTEER DONOR." In a world where everyone wants to be properly compensated for everything, Brent received a second chance at life from a volunteer that doesn't know anything about Brent, except that he needed a transplant. I pray that we can meet this man some day. (We do know that the donor was male, although gender matching is not necessary.)
Good night and God Bless.
Heather

Thursday, April 21, 2005 9:34 PM CDT

Conditioning for transplant is complete, and tomorrow night around midnight Brent will receive the stem cells. They will arrive on a flight into the Rochester airport tomorrow evening. Then they have to be processed and prepared for infusion into Brent's central line. The transplant will take place in his hospital room and most people have their family there and take pictures, etc. Medically speaking, the transplant itself is very anti-climactic, but it is the culmination of a huge, miraculous process, and we plan to be there, even though it's happening in the middle of the night.
Brent is very relieved to be done with radiation, especially. Pray that the nausea subsides quickly.
If all goes well, he'll come home to our apartment on Saturday and then return to the BMT unit each day for outpatient care. Mayo Clinic gets patients out of the hospital as quickly as possible, because of the psychological and physical benefits of being with family, in your own surroundings, etc. We have a lot of strict "rules" to follow about germs, but we'll be happy to have Brent at home in our apartment with us soon.
Pray that the cells find their home in Brent's body and that there is minimal rejection. Some rejection, or graft vs. host disease (GVH), is inevitable, and actually helpful in continuing to fight the leukemia cells. Pray that Brent's GVH will be manageable.
Thanks for continuing to pray us through this.
Heather

Tuesday, April 19, 2005 11:17 PM CDT

It's hard to know what to write on here sometimes. Brent is feeling more physical and emotional effects today. Today he had two radiation treatments, and by the end of the day, he's feeling significantly more tired and nauseous than this morning. We're also told that the effects are cumulative, so he's not too excited about what he'll feel like by Thursday night.

Emotionally, he's starting to feel the gravity of this treatment course. He realizes that regardless of how well it goes, he WILL have bad days, and he will feel really crummy for a long time before he gets better. He's sick of being sick, basically. Our last two + years have been predominantly about Brent's treatments, and now things have culminated to the most intense treatment yet. Brent hates having this kind of attention -- he'd rather be helping someone else.

Brent's desire is that God is glorified, regardless. We will continue to pray in that direction. We do feel your prayers. I've said it before, but I really don't know how people without faith would manage a time like this.

FYI, the catheter is out now, much to Brent's delight!! And we're loving your stories and jokes, so keep them coming.

Heather

Monday, April 18, 2005 11:12 AM CDT

It's day -4 Monday. Day 0 is friday which is transplant day. Then it goes day 1, 2 and 3 and so forth after transplant.

The first treatment went in yesterday at 1pm. I felt some minor effects: a general icky feeling and a sedative-like feeling. Yesterday evening I gained five pounds of water bloat and was put on Lasics(diuretic). Shockingly, within a half an hour I lost three of it. Bloating is one of the usual side effects of treatment. They also blessed me with a saline flushing catheter in my wha-wha! It hurt-hurts!

I am surviving well on the Mayo menu : 0 )

So far things are manageable.

Anyone can add a short story or small joke to lighten our days! It would be appreciated.

Brent

Saturday, April 16, 2005 4:52 PM CDT

Well, the time has come for the big event! I am in a weird way excited for another grand challenge but of course nervous with the unkown of the process. I have kept my courage and attitude up through all this, thanks to all your support.

Thanks for your continued encouragement and prayers.

Brent, Heather and Madeline

Thursday, April 14, 2005 3:59 PM CDT

We finally have concrete dates: Brent will have a minor surgery in the morning to place a central line -- a catheter into a main vein in his chest. This will be used for both giving blood/fluids to him and taking routine blood tests.
Sunday morning he'll be admitted to start chemo. Sunday and Monday are chemo days, followed by Tuesday, Wednesday, and Thursday's total body irradiation. (45 minutes twice each day.) Friday sometime he'll have the actual infusion of stem cells. At that point he may be able to transfer to outpatient care, depending on how everything goes.
There's lots of questions and unknowns ahead. We're both pretty freaked out by the radiation after seeing the room last week. We know it has to be done, yet it seems barbaric.
My mom is arriving any minute to stay for about a week and a half.
Thanks in advance for continued prayers.
Heather, Brent, and Madeline

Tuesday, April 12, 2005 9:56 PM CDT

We are back from our Tuesday appointments with mostly good news...Test results are excellent and I am a go for transplant. Now we are waiting on the donors response for the date for the actual go time. We were told that we should know by Thursday and Mayo has warned us it is looking more like the start will be postponed a week. A week is alright but pray that it doesn't go beyond that.

If the start is postponed we will head back to Minneapolis and keep our apartment in Rochester.

Today we are all sad because our friend Erin has left today. She is flying back to Billings, Montana to see her 17 month old Jack and husband John. Erin has been with us in Rochester a whole week helping us with many things including taking care of Madeline during all our Mayo preparation consults. Thank you so much Erin!

Next on duty when we find out the go ahead date for treatment is Heather's mother Betty. My parents Lee and Fern have been here with Heather, Madeline and I for all the consult appointments and will be here for the majority of the time in the weeks ahead.

Thanks for all your prayers!

Brent, Heather and Madeline

Tuesday, April 12, 2005 5:18 PM CDT

We are back from our Tuesday appointments with mostly good news...Test results are excellent and I am a go for transplant. Now we are waiting on the donors response for the date for the actual go time. We were told that we should know by Thursday and Mayo has warned us it is looking more like the start will be postponed a week. A week is alright but pray that it doesn't go beyond that.

If the start is postponed we will head back to Minneapolis and keep our apartment in Rochester.

Today we are all sad because our friend Erin has left today. She is flying back to Billings, Montana to see her 19 month old Jack and husband John. Erin has been with us in Rochester a whole week helping us with many things including taking care of Madeline during all our Mayo preparation consults. Thank you so much Erin!

Next on duty when we find out the go ahead date for treatment is Heather's mother Betty. My parents Lee and Fern have been here with Heather, Madeline and I for all the consult appointments and will be here for the majority of the time in the weeks ahead.

Thanks for all your prayers!

Brent, Heather and Madeline

Friday, April 8, 2005 2:45 PM CDT

We arrived at are nice two bedroom apartment in Rochester Wednesday evening. We moved things up to our room and rushed to Chipotle to eat before 7pm because I had to start fasting til the next morning for tests. Our apartment is very livable...One thing we were a bit worried about before arriving. So today, Friday, everything is moved in and we feel pretty comfortable.

The last few days have been very busy. Tests, tests and more tests. Everything has gone well so far. I have a spinal puncture this afternoon which isn’t that fun but that’s it for the week so I can do it...We have the weekend off. Next Tuesday is a very big day...The day we will find out all the test results and find out if we can go forward with transplant and when it will be scheduled. Target date for start of treatments is the 16th with the transplant on the 21st.

Pray for good results on Tuesday and scheduling of the transplant on schedule and as much fun as we can pack in between!

Monday, April 4, 2005 12:51 AM CDT

We are frantically packing and getting ready to move on Wednesday. Please send any mail to our temporary address. Again, email and the website will give you the most reliable updates on Brent's condition.

Here's our info:
Brent and Heather Carlson
211 1st St. NE, Apt. 201
Rochester, MN 55906

Monday, April 4, 2005 11:23 AM CDT

We are frantically packing and getting ready to move on Wednesday. Please send any mail to our temporary address. Use either our cell numbers or our apartment number to contact us -- we'll probably forget to check our home voicemail very frequently. Again, email and the website will give you the most reliable updates on Brent's condition.
Here's our info:
Heather's cell: 612.508.4503
Brent's cell: 612.508.2134
Apartment: 507.328.8817
Address:
Brent and Heather Carlson
211 1st St. NE
Rochester, MN 55906

Tuesday, March 29, 2005 11:12 PM CST

We are quickly approaching transplant. It's impossible to know exactly what to expect, and reality is setting in. Both of us have our share of fear as we face this huge unknown. We know that above all, God is sovereign and will protect us. His will will prevail, that we know.
I will update the site in a few days with our phone number and address in Rochester. Our cell phone numbers will still work, as well. We move down next Wednesday, April 6, with the first tests starting on the 7th. Transplant Day is April 21.
Pray for peace, patience, protection, adjustment, healing...
Pray for the donor as he/she also faces the prep for transplant. The donor is totally anonymous right now, and we may possibly gain some information at some point, but that's still uncertain.
Thank you for your continued prayers. I wonder how people without faith can possibly face such circumstances....

Heather

Monday, March 14, 2005 3:44 PM CST

We are home, finally. If you have checked the guestbook recently, you'll see reference to Brent's hospital stay in Florida. Yes, he spent three days at Celebration Health, right by Disney World. After three great days in sunny Florida, Brent reacted to some Chinese food, started coughing, and later spiked a temp of 102.7, so he ended up in the hospital. It took a couple of days to figure out what was going on, but they finally determined he had a mild case of pneumonia and is now doing fine. Although the hospital was nearly brand-new and a beautiful facility and the CT Scan machine was shaped like a sand-dollar (go figure), Brent missed his friendly Minnesota nurses.
Our trip was extended by five days, so our short little vacation turned into 10 days. Madeline handled things fairly well until the last couple of days when she was clearly tired and even got a cold herself. She protested to yet another restaurant meal by standing on the table at a Lobster Buffet on Saturday.
We're home now, and very glad to be here. We did enjoy ourselves in Florida -- it wasn't all bad. Madeline absolutely LOVED the pool -- she learned to say "pool" and even jumped off the edge about a thousand times. The weather was beautiful -- we all have a bit of a tan, but it's good to be home.
On our day at Disney, we ran into our wedding photographer, whom we had also seen very recently at my cousin's wedding in Fargo. It's a small world... We also saw Kent Hrbek in the airport on our way to Florida.
We have found an apartment in Rochester -- thanks to all of you who have given us leads. We found a place through a social worker at Mayo, and it's located just blocks from the hospital.
Heather, Brent, and Madeline

Monday, February 28, 2005 5:42 PM CST

The donor has been selected and Brent's first day of prep work at Mayo is April 7, with the transplant about 2 weeks later.
We don't know if he'll have to have any more preventative treatment in the meantime.
As I understand it, the donor will remain anonymous for at least a year. At that point, if both parties are interested, we could find out the identity of the person and contact him/her.
Now that the date is on the calendar, it seems more real to me. Pray for a medically uneventful, but otherwise wonderful month. We're headed for Orlando this weekend and hope to do some other things around here as a family in our last few weeks at home before transplant.
Brent's still feeling well -- he doesn't have his usual energy level, but he's not feeling sick, at least, so he's able to enjoy doing some fun things.
We have a few leads on housing in Rochester, so pray that we find the best place for our family to stay.
Thanks for all the guestbook entries -- it's good to know you're all checking in.
Heather

Friday, February 25, 2005 4:57 PM CST

Message from Brent:

We thank everyone for all your prayers!

Today I spoke with the BMT matching specialist at Mayo and she told me all four donors are in and all are 10 of 10 matches. This is great and actually rare news to find out I have so many almost perfect matches to have access to! My doctor will make a decision today on who will be the main donor and backup donor. The donors have to go through a thorough physical (Blood work, X-rays, EKG etc.) and education process that takes at least two weeks.

The specialist I spoke with also explained their calendar at Mayo is getting booked up so I might be pushed into mid April for a start date for the transplant. Because of the delay I might have to deal with one more preventative treatment course before transplant.

Just so everyone knows this process is actually going extremely well but still looks like it will be pushed off a bit more! Pray that they come up with a lighter preventative treatment course for me in the mean-time or that the somehow I am able to get in for BMT earlier.

This has been a bumpy road for us understandably and we will be trying to prepare this next month for moving to Rochester for over a month.

We are still heading to the warmth of Orlando Florida for a break from all this coming up in early March. Thank God for the break!

Friday, February 25, 2005 4:30 PM CST

Message from Brent:

Today I spoke with the BMT matching specialist at Mayo and she told me all four donors are in and all are 10 of 10 matches. This is great and actually rare news to find out I have so many almost perfect matches to have access to! My doctor will make a decision today on who will be the main donor and backup donor. The donors have to go through a thorough physical (Blood work, X-rays, EKG etc.) and education process that takes at least two weeks.

The specialist I spoke with also explained their calendar at Mayo is getting booked up so I might be pushed into mid April for a start date for the transplant. Because of the delay I might have to deal with one more preventative treatment course before transplant.

Just so everyone knows this process is actually going extremely well but still looks like it will be pushed off a bit more! Pray that they come up with a lighter preventative treatment course for me in the mean-time or that the somehow I am able to get in for BMT earlier.

This has been a bumpy road for us understandably and we will be trying to prepare this next month for moving to Rochester for over a month.

We are still heading to the warmth of Orlando Florida for a break from all this coming up in early March. Thank God for the break!

Sunday, February 13, 2005 3:13 PM CST

Brent started to feel the effects of his last chemo (from two weeks ago) just in the last few days. His blood counts dropped, and he's had a couple of transfusions of platelets this week as well as some bone pain, mouth sores, and a general "icky" feeling. He seems to be doing better today after receiving some good pain meds yesterday. His counts are also starting to look better.
We had a great time at the Wolves game last weekend - check out the photos in the photo album on this site.
We have no new news about a donor. Continue to pray that the process progresses quickly. I have spoken with a social worker at Mayo who has recommended some housing options for us while in Rochester, and thankfully, Brent's insurance will at least partially cover those costs.
We're going out for Valentine's dinner tonight to Murray's Steakhouse in Minneapolis, and Madeline is going to play with a boy!! (A.J. Radloff).
Have a great Valentine's Day, everyone.
Heather, Brent, and Madeline

Sunday, February 6, 2005 8:04 AM CST

Today we have fun news -- we get to go to the Timberwolves game. (NBA basketball, for those of you reading from Europe!!) Doug Elliott found connections and got us a suite for 12 for FREE!, so a variety of friends and family will be going to the noon game today. We're having food catered and we're planning to have a great time!
We also spoke to Dr. Litzow at Mayo on Friday, and he said the search for a donor is well underway. They have requested four samples and they are starting to arrive and be tested, so we should have results relatively soon. Still, the absolute soonest transplant would happen would be sometime around Easter.
Enjoy your Superbowl parties tonight...
Heather

Sunday, January 30, 2005 10:40 PM CST

Well, we survived the weekend... both Madeline and I had the flu, and Brent has had a rough time with this chemo. He's feeling really cruddy, and we haven't been able to see him at the hospital at all.
Both of us are feeling pretty down right now -- this is such a hard time where not a whole lot is happening and we're just waiting, having too much time to think about all the possibilities. Please pray that a donor is found quickly so we can proceed.
And pray for Madeline. She's very aware that things aren't right around here and in her own little way, she's having a hard time with that.
Heather

Sunday, January 30, 2005 10:40 PM CST

Thursday, January 27, 2005 10:33 AM CST

Brent and his dad just left for the hospital for chemo. He'll be on 4South again. I don't know a phone number, but you can call the hospital and they'll connect you. The main switchboard number is 952.993.5000.
I'm at home with Madeline, who is battling her first ever bout with the stomach flu. She so kindly barfed in our bed this morning at 5:00. However, now she's learning how to puke in the bucket and signs "all done" when she's all done!! Hopefully this will pass quickly.
Brent and I did get a couple nights out this week. Ryan and Laura (and their kitty) babysat on Tuesday so we could go out to dinner, and then yesterday Lee and Fern came down for several hours while we went skiing and had dinner in Taylors Falls.
I keep forgetting to mention that there are pictures in the photo album on this site -- check them out!!
Brent will be checking this site from the hospital, so please sign in to let him know you were here...
Heather

Sunday, January 23, 2005 11:00 PM CST

(This update is for Doug Elliot, who tells me he checks four times a day and it's been too long since I changed this!!)
We saw Brent's doctor on Friday, and here's the plan: he will be admitted this Thursday for about a week to undergo more chemo, similar to that he had before Christmas, but without one of the drugs, which will hopefully ease the process a bit. This chemo is to make sure he stays in remission -- remember, without transplant, he WILL relapse at some point. And he's still pre-transplant, so we do have to worry about relapse, even already.
Brent and his dad are up north for a couple of days, enjoying the snow. I'm home with a teething toddler who's not happy at this moment, so that's it for this time...
Heather

Tuesday, January 18, 2005 10:16 AM CST

We're getting a lot of questions about how the search is going. No new information is out yet -- as I understand it, this will be our longest wait yet. We know that the potential donors are likely being contacted about right now, but as for their testing, we have no idea how long that will take.
We're doing okay -- just waiting and attempting to be normal.
Heather

Thursday, January 13, 2005 11:34 AM CST

We have some VERY PRELIMINARY, unconfirmed results about donors:
The University has found several cords that are possible matches -- not perfect, but very workable. Apparently Madeline's cord is out of the question because it is very very small and has contracted some sort of infection (maybe in the collection process when she was born...)
Mayo has POSSIBLY found some 10/10 matches. This is a huge prayer request -- that one of these possibilities would materialize. The insurance company has to approve further testing for all of the possible donors, and then they'll pursue getting these people retested. Keep in mind several things: some of these people may not be able to be reached for testing. Some may choose not to be tested. Some may not be able to go through the donation process for one reason or another. Some may have contracted some sort of disease that would prohibit them from donating.
So -- we know that the possibility is out there, but it still may fall through. Pray for God's direction as we wait and as we, along with the doctors, choose which route to follow -- cord or adult cells.
Time is also a factor. The cord blood transplant could start at any time. An adult-cell transplant would not start for a while, depending on how fast the donor testing/approval process takes. However, if this is the way we go, Brent would likely have some more chemo in the meantime to keep his body in remission.
Pray for our sanity as we spend much of our days holed up in the house together -- we can tend to drive each other crazy.
Again, remember this is all PRELIMINARY - we're sharing the details so we have some prayer thru the process. This is POTENTIAL good news, but it's by no means certain yet.
Heather

Friday, January 7, 2005 10:13 AM CST

We had a good visit with Dr. Litzow at Mayo yesterday. He explained the transplant timeline and process -- here's the summary:
The search for an adult match begins today. Within a relatively short time (days) a preliminary list will be found. Those donors will be contacted to provide a blood sample and determine if they're able/willing to donate at this time. After all samples are collected, they'll evaluate and determine which match is best. The chosen donor will undergo more physical testing to determine if they are physically able to tolerate the transplant and to make sure they aren't carrying any other diseases that could be transmitted through the transplant.
Simultaneously, he recommended starting a search through the U of M for matching umbilical cord blood.
We both would prefer to be treated at Mayo, but the decision will ultimately be made based on whether the best match found proves to be adult marrow or cord blood. (Mayo only does adult marrow, while the U specializes in cord blood - they're leading the current studies, actually.)
The process of finding/choosing a match will likely take about a month, and then if adult marrow is selected, it will take about another month to prep the donor and collect cells. If cord blood is selected, we would start sooner because the cells are already collected and frozen at the U of M.
Hopefully all this medical stuff makes sense. Again, we're playing the waiting game...
Heather

Wednesday, January 5, 2005 9:47 PM CST

Good news! Dr. Wilkowske called this evening to say that the bone marrow biopsy looks healthy! Brent is in remission. We are going to Mayo tomorrow to meet with the transplant doctor.
Heather

Monday, January 3, 2005 10:34 PM CST

Brent has another biopsy tomorrow morning -- there has been some concern with his bloodwork this weekend. This whole process is just a never-ending rollercoaster -- one day's good news can potentially become the next day's bad news. Ultimately we have faith that God's will will be done, but the process of that happening just doesn't make sense sometimes.
I am not a "process" person. I'd rather have the end result -- waiting is not my thing. (Okay, I'm admitting I'm impatient!!) SO, needless to say, all these tests where we wait for a couple of days for results are driving me nuts.
We trust the doctors and we trust God -- but that process is certainly not pleasant much of the time. My prevailing feeling today is "unsettled." It's hard to sleep many nights because of racing thoughts of "what-ifs".
Thursday we spend most of the day at Mayo in a consultation appointment with the transplant doctor. Hopefully many questions will be answered that day, and we should have biopsy results at that time, as well. Look for an update by Friday with a report on what we found out. In the meantime, assume no news is good news and keep sending the guestbook entries our way. We find them so encouraging, and many others comment on how they find them encouraging as well.
Heather

Thursday, December 30, 2004 5:13 PM CST

Brent came home today for REAL, not just on a pass. We're still being germ freaks, so we're still pretty homebound. Check our guestbook in the next couple of days -- my friend Erin is going to plan a time when everyone can pray for Brent at the same time. Pray that the remission is true!!
Heather

Wednesday, December 29, 2004 5:14 PM CST

Good news! As far as can be told at this point, Brent appears to be in remission. There are no cancer cells in his marrow; however, there are no fighter cells, either. The diagnosis of remission took a while because in order to make that call, the pathologist has to see a minimum of 100 cells total, and that was hard to do with Brent's marrow. They will retest once Brent's blood counts get closer to normal, but the doctor tells us that this is exactly the scenario they hope and pray for in Brent's type of situation!!
So -- we're not out of the woods yet, but things are looking hopeful. Please continue to pray that the remission is true and that complications do not happen.
We are foregoing the Carlson Christmas this weekend because of Brent's susceptibility, but that's much easier to handle knowing that things are looking good for him.
Brent is still technically hospitalized, however he's been coming home on passes during the day for a couple of days, and if nothing happens for the worse he'll continue to do so until he's officially discharged. While he's there in the evening he gets IV antibiotics, and he's there overnight for fluids, monitoring, and to see the doctor in the morning.
We stay pretty homebound during the day in order to avoid germs and get lots of rest, but it's much easier to rest at home than in a hospital room, that's for sure! And Madeline's happy to have her own toys and space to run around in, too.
We'll be consulting at Mayo sometime soon to get the transplant process started.
Praise God!!
Heather, Brent, and Madeline

Monday, December 27, 2004 9:48 PM CST

Christmas has been a season for us, not just a couple of days. We celebrated with the Carlsons on Christmas Eve in the hospital -- we had some food, cookies, a few gifts, and Linnea read the Christmas story from her new Bible. We had our own gift-opening and dinner at home with Madeline on Christmas Day, and then Brent's family came again for a short time. Although it was much smaller than the typical Carlson Christmas, it was just as special being together. We're hoping Brent's home and well this weekend so we can have a more "normal" celebration with the Carlsons. Madeline is enjoying the trickling in of gifts over the last couple weeks -- she knows exactly what to do with a wrapped package, and likes to help everyone else open theirs as well.
Brent had a bone marrow biopsy today and now we're waiting on results. He has developed a nasty cough over the past couple of days and his counts continue to be low, as expected.
We don't have much new info until after the biopsy results come back -- these results will help determine the next step.
Heather

Saturday, December 25, 2004 1:10 AM CST

Merry Christmas!! Brent is getting a "pass" to come home tomorrow for a few hours. We will have Christmas together at home as a family. Please know that we are okay -- we are not feeling sorry for ourselves - we are so aware of the true meaning of Christmas like never before. We are so appreciative of Christ and his sacrifice for us measly humans... Quite honestly, the obsession of gifts and cookies and reindeer and candy canes is more a distraction and irriation to us this holiday. Christmas is about Christ!! He CHOSE to come and be human, which is not easy or pleasant. He CHOSE to live a life of pain,sacrifice, and scorn in order to spare us the eternal consequences that we deserve.
Please know that although Brent is gravely ill, we both are well aware of his mortality, we are both at peace with God, and we are trusting in His perfect plan.
Truly, have a merry Christmas. PLEASE, PLEASE remember why we celebrate. Love your family more today than ever. Love your Savior more today than ever. And know that we love you all. Merry Christmas, and God bless!!!
Heather, Brent, and Madeline

Wednesday, December 22, 2004 11:44 PM CST

Brent spiked a temp today and he's back in the hospital. They are looking for possible infection, but won't know specifics until tomorrow, at least. He's also having a significant amount of pain in his bones. This is not a surprise -- it kind of goes with the territory.
He wants you all to know how grateful he is for your prayers --please continue to storm heaven on his behalf. Also pray that Madeline and I stay healthy.
Although Brent looks well, he's very sick, and we all need to remember that. Many of you who have visited have seen that he's pretty much "normal" in his demeanor and appearance, but we have to remind ourselves that he is very, very sick, and that he truly has no immunity right now. Even a slight cold that is nothing to most of us could be fatal to Brent. Madeline and I also need to protect ourselves from these infections so we don't pass them to Brent. Please give lots of thought to whether you should visit or not. Please don't take any chances!!
I find myself asking "what is God's purpose in all of this??" I certainly don't know now, but I pray that some day that will become clear.
Please pray for our family -- this is certainly not easy nor pleasant.
Lots of you ask what things you can do for us. We are working on figuring that out, and trust me, I will ask for help. Off the top of my head, I guess food is really a good help. A neighbor brought some over today, and it became my dinner here in front of the computer at midnight. Basic foods that can be either frozen or reheated easily are a good thing right now.
Thank you all, and good night!
Heather

Monday, December 20, 2004 3:27 PM CST

Hello again -- we're still at home! We had a good weekend celebrating Christmas with my family, and now my mom is staying a few extra days to watch Madeline so I can get some things caught up at home and get ready for Christmas with the Carlsons this weekend.
Brent's counts have dropped even more, like expected, but he's still infection-free and feeling decent.
There's nothing else to update you with -- we're still waiting until next week to test for remission.
I'll probably not write much more this week, unless something happens, so assume that no news is good news, and feel free to sign the guestbook. We are so thankful for those entries and so encouraged by them.
Have a blessed Christmas, and remember to truly LOVE your loved ones!
Heather, Brent, and Madeline

Friday, December 17, 2004 10:53 PM CST

Brent is home! Even though his blood counts are dropping like expected, they let him come home. We'll be going to the clinic each day to check Brent's blood.

Now is the time when risk of infection rises, so Brent has to be extremely careful about germs -- our house has been disinfected, sick people aren't allowed, and Brent has to wear a mask when we go out.

He's also still great friends with the anti-nausea medication.

We are so excited that he's home again, so we'll gladly take the extra precautions to have him here!

If you missed yesterday's entry, please check the journal history. I addressed the question of how to get on the bone marrow registry.

Heather

Thursday, December 16, 2004 11:26 PM CST

Many of you are asking how to get on the national bone marrow registry. Go to www.marrow.org and look under donor information. You will find a map where you click on your state and it gives you places in your area to get tested and registered. Depending on the area, it costs between $50-$100 to join the registry, and the only medical procedure involved is a blood test. If you were ever found to be a match, you would undergo more in-depth testing. The actual procedure of donation involves a needle in your pelvic bone -- in your very lower back, just above the butt, basically. This needle goes into the center of the bone where the marrow (liquid) is. Marrow is extracted for donation, and it regenerates itself in a matter of weeks.
The chances that anyone we know would be a match for Brent are extremely small, but we still encourage everyone to get on the registry. If you can't help Brent, please make yourself available to help someone else, particularly if you are a person of minority. There is a shortage of minorities on the registry. Bone marrow matches are usually of similar ethnicity, as I understand it. Donors need to be between the ages of 18-60. Check the marrow website for any other questions -- I certainly don't have all the answers.

If you are in the Minneapolis area, you can go to Memorial Blood Centers in Minneapolis to be entered on the registry.
We urge you all to do so -- the cost is minimal, and you could possibly give someone another opportunity at life. Maybe there's another young mommy or daddy out there that needs new marrow so they can see their children grow up, just like Brent needs new marrow.

Thanks Jill, Jen, and Sam for coming to clean our house tonight. And thank you Colin for babysitting so I could help! We have awesome friends who are not only willing, but want to help us in any way possible. Barb wrapped Christmas gifts for me. Jenny, Jen, Joel, and Theresa have babysat. The pastors from Grace have been extremely faithful in visiting Brent.

Brent is planning to come home tomorrow morning!! Praise God! We never imagined that he could possibly be home for Christmas. Please pray against infection so he can truly enjoy this Christmas with family. All of the Carlsons will be together at Brent's parents' next weekend, and we've been looking forward to that -- pray that Brent is able to be there and feels well enough to really enjoy the time. Pray that we enjoy this coming weekend with the Hermunslies here at our home, as well.

Brent spoke with a doctor from Mayo today, and we are planning to explore both adult bone marrow and umbilical cord blood options. Pray that they find the best match possible, that we find housing in Rochester (many transplants are done outpatient !!!!!!).

The most urgent prayer request is for remission. Pray against infections in the coming week and a half leading up to Brent's biopsy. At that point well know what the next stop will be.

Many are asking me if I'm really doing as well as I sound in these emails. Honestly, I have my down times, but I've determined that a positive attitude is the best way to go. We need to focus on the best. Yes, we're aware that this process is dangerous and that Brent may not survive. But I remind myself daily that God is able and that there is no use in grieving something that hasn't happened yet. So we treasure our time together as a family, and we believe that God can heal Brent, and if He chooses not to, He will guide
those of us left behind. I honestly believe that God's will will be done, and how can I argue with that?

This will be a very special Christmas. Brent already gave me the mother's pendant he bought for me the night before he was admitted.

Please take an extra moment today to truly love your loved ones. Realize that life is precious. Life is fragile.

Keep checking back. We love hearing from all of you.

Heather, Brent, and Madeline

Wednesday, December 15, 2004 11:56 PM CST

Brent is finished with his chemo, and we're now praying it puts him into remission! We won't know for about two weeks if it was successful, but while we wait, pray against infections and for peace and patience as we wait.

He has had a fair amount of nausea in the past couple of days, but drugs, saltines, Dr. Pepper, and toast have kept it reasonably controlled. He also has a strong taste of medicine in his mouth all the time (think of chewing aspirin...)

Brent will possibly be coming home this weekend!! I have a few girlfriends coming over tomorrow evening to help me clean the house from top to bottom so it's ready for him to be here.

We start our Christmas celebrations this weekend with the Hermunslies here, and we're so excited that Brent will likely be home with us.

Please email or call me directly if you're thinking of visiting and we can see about a good time. It has become a zoo in his room... hopefully that can be resolved by him coming home!!

Wednesday, December 15, 2004 1:25 AM CST

So far Brent has felt minimal effects of the chemo. Today will be his last day, and then we wait to see if this round put him into remission. Pray that Brent will be able to be home for Christmas. In order for that to happen, he needs to avoid infections and continue to feel strong.
Pray for Brent and I to be able to maximize our time together. Hospitals are really busy places, and we find ourselves hardly finding the time for meaningful conversation, which is really difficult.
Pray for Madeline's adjustment to an even more inconsistent life than she's used to. She's been able to stay at home the last couple of evenings, thanks to Jen, Joel, and Lee, but I know she knows something is strange in our family. She walks around the house saying "Daddy", and she brings me books and says "Daddy" -- he's the one that does most of the reading to her.
We have decided that when transplant time comes, we're going to Mayo.
Thank you all for your wonderful encouragements through the guestbook. Please continue to let us know you're keeping up with Brent's progress. We both find it very encouraging.
Heather

Monday, December 13, 2004 11:55 PM CST

Thanks for the encouragement everyone!

I've come to a point where God is helping me face a cancer that cannot be solely faced through alternative medicine. This is hard for me considering my heart for nutritional first vs.
conventional.

I am also struck by the true severity of this ALL Leukemia. After researching various websites, etc., I have concluded that nutritional healing is powerful but there are a handful of cancers, including ALL, that are so aggressive they respond only to chemotherapy. Nutritional therapies are helpful in recovery, but I have no choice but to do this chemo first.

SO, here I go diving straight into possibly the hardest cancer
treatment out there. Believe it or not, the process intrigues my nutritionally-minded head. Yes I am nuts!

In football, it's the "No pain, No gain" idea. A lot of athletic preseasons are very nasty, painful and draining times. So thanks to my previous coaches for running me 'til I hurled in practices,
because you really prepared me for this battle!

Is this all scary? Yes! But I know God is with me and only
through Him - and a couple wonderful drugs I get to have:) will this painful process be soothed. He is the one and only true Physician. I will be held up through this with the help of our earthly physicians, family and friends but most of all GOD the Great Physician.

Thanks to God for my courageous wife Heather and our little
socialite, Madeline.

May God bless and protect all of you, as well, as we fight this battle together!

Love you all,
Brent

Sunday, December 12, 2004 11:39 PM CST

Brent began his chemo treatments yesterday, and as of now is feeling great! We're decorating his room for Christmas and doing our best to make the most of this difficult time.
Thank you so much for the wonderful encouragement we've already received. I have so many friends who have said to call anytime day or night for any need, and that is such an amazing thing, especially with a wiggly one-year-old in the house!
Please check back often for updates -- we'll do our best to stay current. Email me if I've fallen behind, and I'll try to update!

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