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I also include a description and our approach to the bone marrow transplant. "Young Man Christian" My good friend Florian wrote the accompanying lyrics for Christian's discharge. If you wish to enjoy more of his work, visit his web page.
(The music file requires RealPlayer G2, which can be most easily found for the Win95/98 platforms. Currently available players for MacOS have not been tested as they are in beta versions. It appears that RealPlayer G2 can send both Netscape and InternetExplorer out into the weeds.) September 12 - We are spending time working out how we will spend Christian's "Anniversary" - the anniversary of his death. One year ago this weekday, Karen and Christian went to the BMT clinic for what was thought to be a routine follow-up and transfusion, and ended up getting Christian's death sentence. He was singing when I finally arrived. It was the last time we ever saw his BMT doctor. She cleared out fast. September 7 - We went up to the cabin on the Osen side of the family. This cabin has now been dubbed "The Feast House". A term Christian coined years ago. We built the tree house that Christian had so much wanted to build. After returning home, Anders said, "Maybe Christian is up in the tree house right now!" Anders returned to 2nd grade. His locker is across the hall from Christian's second grade room and locker. It was something of an emotional moment to drop off only one kid for the first day of class. Karen and I are getting some quality time alone with each other now that Anders in in school during the day. I am taking the job hunt more seriously now. August 27 - We have been very busy. We went up to the Kenny-Bent cabin, named after Karen's late brother. The three cousins had a great time. We hung framed pictures of Christian's late grandfather (Jan), Uncle (Ken) and brother (Christian). Sam, a friend of Malcolm's, died last week of a soft tissue cancer. They met on the Highland hockey team and continued friendship through their treatments. He was eight. I am both sad and glad we did not know him. I have been working very hard trying to get our backyard into order after we had a new walk and patio put in. I have been shoveling and sifting for days. We found an email Christian had sent to himself on KidDesk. It said, "I love Hannah." Hannah is a girl who came to his eighth birthday party. It hurts and is some comfort to know he was growing out of our arms in a natural way. In a grief group we attend, a mother of a boy who died of cancer that is a complication of a hereditary disease, spoke of the guilt the father has over passing the disease to his children. Someone asked him, "Having the same disease, do you regret your life?" His answer was, "No!" I believe all of our efforts (family, friends, medical, church, co-workers,...) to give Christian everything we did led him to the same answer. Shortly after his first painful brush with death, after his first relapse, Christian added to his bedtime prayer, "Thank you, God, for the wonderful life I have had so far." He was seven. Karen and I will remember that always, word for word. It gives us some peace, even though it will never be enough. I am trying to loose weight that I have gained during the cancer thing. I know I need to loose weight when Anders and his swimming buddies get so excited to go body surfing off of the waves generated by one of my dives. The game of poke the Pillsbury doughboy under the water doesn't help my self image either, being that I am the only one that gets to be the doughboy. August 15 - Another very emotional week crept up on us without much warning. The music director at our church died of liver cancer. He was 49. The funeral was Saturday. The assistant pastor at our church was installed as senior pastor on Sunday. He has been very much interested and supportive of our family before and after Christian's death. After our pastor's installation, we rushed off at light speed to the Pine Tree Apple Tennis Classic where we released one of 106 balloons representing the patients at Children's - St. Paul that have died in the past eight years of the tournament. I wished we had never heard of that tournament. In the very significant tournament program, a copy of Christian's two page story, as written by Christian the day before his last relapse, was sponsored by some unknown generous person. We again saw pictures of Christian as the 1997 poster child. The list of individuals that have given gifts to the PTATC fund raiser in memory of Christian outnumbered all other such gifts combined. Thanks to the many people that stood behind Christian and his family. It showed up again in black and white in the program. All these things again choked us up. Karen is missing Christian horribly for the past several days. My time in transition between jobs is busier than when I was working at Honeywell. Catching up on house maintenance, delayed for several years by the cancer lifestyle, is taking up a great amount of time. I am increasing my efforts to find a new position, but it will not become top priority until September. My dad turned 78 today. Happy birthday, Dad! August 7 - It was a very busy week for being between jobs. The Honeywell outplacement service took two days to discuss the "job hunting project"; it was well worth the time. It is at times hard being at home full time due to the many reminders of Christian. We went up to my parents' lake place for four days. Karen and I pointed out dozens of times to each other how Christian would have been so excited about this or that - swimming, going to Ben Franklin's, buying some cheap toy at the gas station, making pancakes, reading HP IV and on and on... Anders celebrated his eighth birthday. He will have had at least three parties. We went to Circus Pizza with his friends. One of Christian's most favorite places was Circus Pizza. He would always win at least one jackpot. After being annoyed with Children's billing department for years, I sent them a notice that one year after Christian's death I am no longer going to open or recognize any of their bills. I just got a bill from January 1998 - it has taken them two and a half years to come up with an incorrect bill. I paid it, but told them to get their act together by 19 September 2000, or go away. This felt good. I think a year is enough to get the patient's portion of the bill correct. It is not a matter of disagreeing with the bills; it is a matter of seeing them for the first time. July 29 - I am free of Honeywell and will miss the people that so supported me during Christian's illness. The fact that about half of them are no longer working at Honeywell makes it somewhat easier. I will be very lucky to work with and for people like that again. (Upper management is another matter.) My father is out of the hospital after suffering what appears to be a very mild heart attack that left no signs of damage to the heart. A year ago today we brought Christian home from transplant thinking the worst was behind us. In the past week I have had several pangs of great anger over how much Christian suffered to stay alive. It puts being on severance in its proper place on the stress list - near the bottom. July 22 - The last two weeks have flown past. After CNN announced that Honeywell would be laying off 5,000 employees, I raised my hand and said "Take me! Take me!" They did. My last day at Honeywell will be this coming Friday. I get a very nice severance package. I doubt I will have trouble finding a job as I am a software engineer with a Ph.D.. It is concerning to see the saddest faces belonging to the people that were not laid off. I have been interviewing for about three months now. Anders spent the past week at the UofM's Farm Camp with two of his cousins. He and Elliot took care of a bull calf they named "Gold Bullet", among other names. Karen and I will always have mixed emotions about these experiences. Anders deserves this; Christian deserves this. We can only give to one child now. July 5 - We returned from our road trip from South Dakota and Wyoming. We went with a fair portion of our extended family. For seven days we were with Karen's brother's and sister's families. For the last two days we were with my sister's family. We saw the Badlands, Mount Rushmore, Crazy Horse and Crystal Cave; we went horse back riding, water sliding, mini-golfing and swimming. We got stranded in the middle of a herd of buffalo. We had a steak eat off in Deadwood, SD after seeing a bunch of guys shot dead. I finally got to go to Wall Drug and the Corn Palace. We walked around Devil's Tower. It was the first real vacation we took since Christian was born. We took vacations during his illness. It is hard to say they were vacations for Karen and me, as the focus was not to give the family a vacation, but to give Christian other things to focus on other than his treatments and the associated side effects; to pump him up for the next course of treatment. We would prefer to have vacations with Christian and his cancer rather than vacations with neither. There was a significant hole in the experience. We could do few things without thinking of how Christian would have enjoyed doing them with us. If you wish to read the Star Tribute article which has great interest to us, just go to www.startribune.com and search for Uckun. This is the fellow who denied treatment to Christian, even though Christian qualified for the experimental study and later died from exactly what this study was supposedly treating. Rest assured, we are confident this man's science does not hold water. It was a good thing that Christian was not subjected to a treatment that was probably known to be a failure prior to the study being opened. June 23 - We will be on a road trip until the 4th. Folks in the area may wish to read the July 2nd Star Trib. I can't say any more. June 21 - I survived Father's Day. Missed Christian, but Anders and his two cousins were with us continuously during the day. Karen is recovering from a shoulder injury. We have been pretty busy getting Karen over her injury, helping her sister prepare a house for sale and preparing for a summer road trip with another two families (Karen's sister and brother). We are continuously pecking away at the many household things that were left undone for years. I went out shopping just briefly last night and I swear I saw two kids, that from behind, looked just like Christian when he was about two years old. I am starting to notice similarities in face and voice between Christian as he was and Leif, his cousin; I hope my mind is not play tricks with me. It was very comforting to see Leif sleeping in Christian's bed last night. He was excited to do so. June 14 - We had the cousins over again last night as their parents prepare their house for sale. Ander's statement at 9AM on the first day of his summer vacation: "I'm bored!". He will someday be able to understand just how much he lost. A ninety-eight year old friend of the family passed away last week. During the last week of his life he verbalized how unfair it was that he had lived, being ready to die, and Christian had died. He was one of my childhood heroes. Tony, the guy next door with the huge garden. June 3 - We will be having some of the cousins over this tonight for a sleep over. Cleaning up the kids room was hard for Karen. We still find additional stashes of Christian's treasures. It was nice to sit on his cleared off bed again. Florian and I played tennis as usual this morning. We saw my neighbor and son, Ray and Harry, playing tennis. Harry was Christian's friend. It hurt to see something so beautiful. I think for the first time in my life I was jealous. Sometimes Karen and I want to scream at people: "Do you know how lucky you are?" May 31 - We went up to the Osen's lake place this past weekend. We had a very enjoyable time. It hurt confronting Christian's tackle box, fishing rod and empty bed. We had pancakes, which he always helped make. May 22 - We had a very busy weekend. Anders went to a bereaved sibling weekend camp. He had a great time and met other kids who had recently lost their sibling. Karen and I were at home alone for two nights. We became very sad. It was just too quiet. May 15 - We made it through Karen's first Mother's Day without Christian. We did it with a fairly even keel. We shared dinner with the Redmond's and Karen's sister's family. It was an ok day. May 6 - It was another fast week. Karen has somehow found the strength to go through the "photo drawer". This contains many photos that accumulated over the past several years. It is hard to rediscover pictures of Christian. We had a spontaneous dinner with the Redmond's on Saturday out on the porch. We lit many candles for Christian and Malcolm. April 29 - It was a fast week. Most of it was just a blur to me. Jim's kid has started treatment. I tore up the sidewalk with a jack hammer. We treated the lawn with Grandma Putt's lawn tonic; I had waited years to do this with Christian - it is a chemistry kind of thing. Karen did a lot of gardening. We have been able to enjoy the tulips for the first time in four years. We were always rushing to and from the hospital and only noted they were still there. Anders is having a friend sleep over tonight. There is more exciting news on the tennis front. April 22 - It was another rough week, mainly due to an article in the Pioneer Press. Without going into it too far, it was about a doctor who, in three and a half years of treatment, was the only doctor we dealt with that was contemptible. If everything in the article had been true, his denial of treatment to Christian could be considered his denial of Christian's best chance of life. However, I am aware of a history that shows that many things in the article are just plain untrue. What concerns me is that he is using this misinformation to justify $50M+ in additional Federal and private funding. Karen and I will be giving careful thought if this is going to be allowed over Christian's dead body. It is hard to understand why he denied treatment to Christian. It was not for defendable medical reasons. In the article he was presented as a "Buckaroo Bonsai in the 8th dimension" kind of guy. He did not present himself as such on the day before Christmas Eve 1998 when he called us unsolicited and babbled for an hour and a half trying to get Karen and I to agree with his viewpoint. Jim's kid is being seen at the UofM. It seems that it will take about a week to finally get around to the biopsy. So typical. I swear Children's would have had the road map drawn out in 72 hours. Pray that things work out such that the kid gets treated at Children's. The UofM surgeon looks to be the best bet for many miles. We planted seeds today. It was the last normal thing Christian did last year at this time. There is exciting news on the tennis front.
April 8 - It was a better week. A friend from our Seattle days is visiting today through Friday with her two kids. The Redmond's are back in town and it is good having our soul family to have dinner with (as we did last night). Brother Michael's (our neighbor) has a pool. Last year at this time Christian had started to check it every chance he could to see whether it was ready for swimming or not. He never got to swim again in that pool. I checked it out today - for Christian's sake more than anything. April 2 - It was another dark week. We have started a grief education class - where they map out some of the terrain we may be crossing in the next few years. Karen prepared a short presentation of Christian's life to the group. It was on her birthday. I took the day off so she would not be alone. I am glad I did, for it was a very rough day for her. We went for a bike ride with Anders along the one and only trail Christian ever had the energy to bike on. That was nice. Somebody was interested if we had done anything special on her birthday, other than standing by her in her life, we did nothing special. It was what was right and what was appreciated. Material gifts at this point are almost offensive. March 26 - Karen and I have both been thinking much of Christian's darkest days. It leads to being short on sleep. We both are rerunning the last six days of his life over and over in our heads. We watch some family video for the first time since before his death. It happened to be of his third birthday, when things were still so flawless. While he was opening a present, you can hear me asking him, "Isn't it a wonderful life?" Most of the scenes I do not even remember. The last four years appears to have washed many memories away. A couple of Anders' friends have been over and have ridden Christian's bike. It seems odd. March 19 - It has been six months to the day since Christian passed. We finished "The Little Prince". It has a beautiful ending that hurts. Karen's birthday is next week. I cannot give her the only thing she really desires. This is a month of birthday celebrations. It is impossible to forget Christian's absence. March 8 - Anders is now taller than Christian was. We finished the third Harry Potter book; this book was one of the last things Christian cherished. Anders is now reading quite well and has surpassed Christian in this as well, though Christian was far more challenged due to radiation and missed school. We have been reading Malcolm's favorite book "The Little Prince" in honor of his birthday last week. We started to do spring things. There are two of everything: field hockey sticks, racquets, bikes, helmets, baseball gloves soccer balls, .... We went out to my sister's place for the third time since we lost Christian. This is hard to do because this was as good as Christmas for Christian. We launched rockets, rode bikes, played flashlight tag and did so many things that our buddy used to enjoy. Adam, one of his most favorite people in the whole world, had not yet constructed his rocket (given for Christmas 1998). He had been waiting to launch it with Christian and I think he started to avoid it. Anders has been more emotional lately. In church he was drawing a maze, something he and Christian used to do. When he remembered he was without Christian, he said "Oh, I will do three more. By then I will have forgotten the first." It turns out that Anders has strep throat. Four years and one week ago we were wondering why Christian's strep was not going away. We fear March and April. It has been nothing but bad news and terror for five straight years. Siblings have a greater chance of getting the same disease. An Anders quote while being rushed to get ready for school: "Hey! Wait a minute. I have some doddling to do here." February 27 - The last two weeks have gone by swiftly. I have done major cooking for two weekends in a row, due mainly to the influence of John Redmond. Last weekend I had my side of the family over and grilled steak, and cooked ratatouille and Greek spinach pie. This weekend we had the Redmonds over and I made three pizzas (pepperoni, spinach/garlic/olive and roast red pepper/artichoke heart) and semi-sweet chocolate cheesecake. Anders had no interest in helping. Christian would have been helping me the whole time. We rediscovered the photo album that Christian had started for himself. It was a tearjerker to go through it. About twenty of the seventy photos were of him in the hospital or clinic. Just seeing those pictures reminded us of how hard his body worked to stay alive. Our whole family is taking Norwegian lessons. Florian is still very effectively coaching me in tennis. Life is continuing. Tomorrow is another milestone. Christian was diagnosed four years ago on this day and our carefree lives ended, Malcolm Steen Redmond was born nine years ago and the first child of a grief group couple was born one year ago. Two out of three ain't bad. February 13 - Karen and I had a rough week. After several weeks of showing no outward signs of grief, I crashed over the past few days. I had been wondering why I never felt that I actually missed Christian. I now believe subconsciously I was avoiding missing him because of the pain felt when thinking about it. We brought Anders over to Granny M's for a night when she generally has all her grandchildren over so she can enjoy them and their parents can have a night out. Last year we dropped off two kids. This year we dropped off one. Listening to the four surviving grandchildren laugh and play was the first time I actually heard the absence of Christian's voice. Bringing Anders home late we put him into his own bed directly, rather than into ours, for the first time since Christian died. I laid down with him and he held me. I do so miss laying down with Christian. February 6 - I gave blood this week. They used a special bag for it because I had matched some kid in need. The nurse said it was probably a preemie or an oncology patient. That was great. We had a hard day yesterday. Anders woke up and went down to watch cartoons by himself. Anders started Norwegian lessons with the three cousins from Karen's side of the family. He then went sledding with them. We met them at Parker's like for skating and fireworks. We had a Haug-omonium at a restaurant for Karen's sister's birthday. It was painfully obvious of the 'empty place'. The transmission went out on the van. It used to be that this type of thing would very much stress me out. Now I almost laugh at it. If all our problems could be solved by a couple thousand dollars, we would be the luckiest people in the world; even if we didn't have the money. January 29 - It has been a quick and normal two weeks. I am very much enjoying a new ritual with Anders: spending most of the evening together building a robot, playing PlayStation, doing homework, playing piano, doing stuff in front of the fire and in general just hanging out at home as a family. We went cross country skiing. Karen and I started to take Norwegian in community-ed. Anders starts Norwegian with his three cousins next weekend. Uncle Chris joined Karen and I for a pleasant dinner out, followed by an intimate concert held in a private home on Summit Ave. Florian sang superbly. We also enjoyed the other talented musicians. Christian is still very much on our minds. His photos cover the 'fridge. January 22 - Karen finished all the thank you notes for the many memorials. Thanks. January 16 - We went to a grief support group for those who have lost family to cancer. All I can say is that some of the stories we heard make us feel lucky. We had dinner with the Redmonds last night. They are still our best support group. Our pastor, who was with us through all of this, has accepted a call to another church. It is our loss. We have had several sad days as we finally get around to taking down all of the Christmas decorations. We finally mailed in the many memorials to Make-A-Wish and Pine Tree Apple Tennis Classic. The total was well into the thousands. Thanks. These organizations helped us directly during Christian's fight. Karen is still doggedly trying to finish off thank you notes. I tell her, "Stop! Over one hundred is enough already. People will understand." But she keeps finding new people to add to the list. January 8 - Not much to report. It seemed almost too normal of a week. The layoff at Honeywell did not affect me (like my job is much of a priority right now). January 2 - Happy New Millennium. We got through Christmas - not without many tears. Likewise with New Years. Anders had a fun Christmas. We enjoyed New Year's Eve with the Redmonds. They caught our stove on fire - must be a French thing to do on the last day of the year. I am enjoying a four day weekend at home. December 24 - Merry Christmas. We have most of our gifts under the tree. We are materially ready for the holiday. The past few days have been surprisingly tranquil. A couple of nights ago we ended up with seven kids in our house and then we had an unplanned dinner of eight with the Redmonds and Florian and Helena (who is surviving her Leukemia well). Florian played the piano BIG (he is a professional pianist). We had ordered a new dining room table about a month ago and did not expect it until the middle of winter. It arrived on Monday and was used three days in a row for dinners. We need to continue to celebrate life even if there is a big hole in it. We will have dinner with my family tonight and with Karen's family tomorrow. For New Year's we are planning to go to Capital New Year in St. Paul on the 30th. Florian's page has a link to the schedule. December 14 - This would have been Christian's ninth birthday. Happy Birthday Christian! We have been predictably having some rough days. We have been dwelling on his many pictures. We will always lament how beautiful he was. We will decorate the Christmas tree tonight, go to "Toy Story 2" with Anders this afternoon and have pancakes for dinner. This would have been what Christian would have wanted to do. Anders put beanie babies on the tree, just as he and Christian did last year. He also came up with the concept of throwing out the last of the medical stuff as something special to do in Christian's memory. I am taking the day off. Karen and I had a morning coffee at Caribou this morning. If Christian had not relapsed, he would have been with us. We hung up a painting of Christopher's he had painted of Christian, cousin Leif and Anders. Karen is almost finished with responding to the many memorials given on behalf of Christian. I have not had the strength to help much with this. If you have been waiting for a response, thanks for your patience. I hope to finish closing his financial and legal matters by years end. If I find the strength to update this page between now and Christmas, I will be amazed. December 5 - Karen is getting deep into the many cards given to us after Christian's passing. It is great having the Redmonds back as they are very much a support group for us. John had a routine physical and was found to be quite healthy. November 26 - We exercised Thanksgiving. Karen had a hard day. Pulling up to my sister's place with Christian tore her apart. I fell apart at the dinner table with my sister's well stated thanks for having Christian in our lives for the short time we did. We are surrounded by a large loving family; this helps. Dr. Hilden called to say she was thinking of us; the effort speaks volumes on the humanity of the Children's - St. Paul staff. We hope to get back to the thank you notes for the many kind gestures offered in Christian's memory. The effort has been hard to address. Karen would like to extend an offer for those with clear memories of Christian to write down the memory and send it to us. Karen hopes to finish a book Christian started on his life. She would add these memories to his book. November 17 - I found the composure to send an email to Christian's BMT doctor. I let her know that scheduling Christian for another clinic visit was callous. I also stated that the BMT staff had gotten only the very best from Christian and his family and that when it came time for them to reciprocate, Christian did not get the very best from them. The doctor said in a return phone call that she would take my comments to heart. What ever change in behavior that means for the next patient, I will never know. I hope to be able to walk away from this issue now. I know it will always haunt and anger me. Karen and Anders will be presenting an overview of our trip to Norway to Anders' class. November 10 - We collected Christian's ashes last night from Bradshaw. It was a small comfort getting his remains home again. I am not sleeping well. After my first sleep cycle I wake up and then toss and turn for the rest of the night. I can not remember any dreams. This has been going on since Malcolm died. We went out for dinner with Ingrid last night. November 4 - Adding insult to injury, the BMT clinic at the UofM sent us a letter informing us that Christian's six month post-transplant checkup is scheduled for December 14. December 14 would have been Christian's ninth birthday. It appears the UofM medical staff is as in touch with Christian six weeks after his death as they were while he was alive. I wonder if we will have to pay a co-pay on this? I am thinking of going to the appointment with the urn containing Christian's ashes and see what kind of diagnoses they will come up with. It will never cease to amaze me how this staff ran away the untidiness of Christian's last relapse. November 1 - Malcolm's funeral went well. It was a beautiful day. We had the first thunder storm in the Twin Cities since the night Christian passed away. Although the family originally intended it to be a small private ceremony, about 150 people came. The Redmonds have most of their extended families in town. October 28 - Life support for Malcolm was discontinued yesterday at about 6PM. The family will likely have a private memorial service and burial on Saturday with only family members. I will update this page with details as they become available. Malcolm was and will always be one of the most beautiful children I have ever met. He will be missed. I hope he and Christian are playing Nintendo, or something even better, together right now. October 27 - Horrible news for Malcolm's family. He is in the PICU on life support and has been declared brain dead. Apparently his Wilmes tumor began growing in his brain weeks ago, when he began having headaches. The headaches were thought to be side effects of the chemo he was having. The doctors have told the family there is no hope for Malcolm to recover. He was at home this weekend having a wonderful time. They went to the ER on Monday for what they thought to be a sinus infection. By the time visitors read this, Malcolm may very well have been taken off of life support and declared dead. Prayers for Malcolm and his family would be appropriate. It is comforting to think Christian may now be with one of his best friends. The friend he told hours before his own death, "Malcolm, I love you. I love playing Nintendo with you. I am afraid of dying." October 25 - We returned from a great trip. We only regret we did not have more time and traveled with only one kid. Anders' personality is blossoming every day, probably due to the relief from uncertainty. We shopped, ate and drove none stop. Some of the highlights were: sleeping at the Haug fjord-place, shopping in Lillihammer, sleeping above treeline in a sod-roofed hytta in the Dovre fjell, seeing the Nidoros Cathedral, visiting with family and eating all kinds of food hard to get in the US. Christian's life seems to be so remote. It is only five weeks since we held him. I get angry. Karen feels drained. It was a relief and comfort to get back to all the reminders of him. It is also painful. We will try to get to all the sympathy cards in the next two weeks. October 14 - We have packed. I will be leaving work within the hour. If I get a chance to get onto the Web in Norway, I will leave messages in the Guest Book. October 12 - The van has been reserved. We are starting to pack. Here is a story that made our jaws drop. Karen went to a T-shirt shop to have a sweatshirt made with Christian's photo on front - it also had his name and about ten descriptive adjectives. Karen had not said anything about who the photo was of or why she was having the sweatshirt made. The young woman, as she is laying out the artwork says, "I should really make one of these for my sister. She was just diagnosed with Leukemia last week." Anders has a girl in his classroom with Leukemia. I fear Leukemia will again affect this extended web family in the near future. Something is changing in our world. I half expect Christian's oncologist to call and tell us Christian's final relapse was in Anders' donor marrow and was not Christian's original leukemia. October 9 - We all have our passports, we have our plane tickets and I have just emailed a car rental request to a Norwegian car rental place for a minivan. We leave for the holy land (Norway) this Thursday evening. We went to Anders' soccer game today, first and last of the season for Karen and me. We went to the Farmer's market with Anders and had a great time. These are all things that Christian would have loved. I can only hope he is smiling down on us. There is big on the tennis front. October 4 - We spent the weekend up at my family's lake place, one of Christian's favorite places. My sister's family was up along with my parents. It was painful not having Christian there. There was a great deal of grief from the adults. The kids did not seem to be affected. We made pancakes for the first time. Christian would have always been there helping. Karen and I have been ruminating a great deal on Christian's last days. My mind has been fixated on several things:
September 30 - Anders has been back in school since Monday. I took Monday off to do something with low stress - replace the power main in our house. I am back to work again. Karen, Anders, I, Granny M and Kirsten all have new passports in process. We have booked five seats to Oslo, Norway for a vacation Oct 14-24. I am having a hard time recalling the sound of his voice. I am publishing the obituary and other items below in response to numerous requests. I will continue to update this page as I realize there are many caring souls out there who are interested in how we are surviving.
September 26 (100). Today was to be the 100th day since transplant. We had hoped to celebrate a disease free recovery. It has been one week since Christian passed. The visitation and funeral went quite well. We thank all those who have joined in our grief and given us support. We loved that kid. We miss him. We wish he were still here under any circumstance. He is gone. We are starting to explore what life is without Christian and without disease. The night of his funeral we went out with our extended family, twenty strong, and had a nice dinner at the Cherokee Steakhouse. Yesterday we went to the Renaissance festival. We have updated our passports and are planning to fly off to Oslo in a few weeks. We need to get away. The air fares are very low right now. Granny M and Kirsten may very well join us. Many people have asked for me to publish several things. I include the eulogy I wrote and Christian's Aunt Kirsten read at the funeral. Christian's Eulogy
I first gave love serious thought after I met Karen. My love for her was such a love, that if I would die at any moment, I would die a happy man. Years later I held our first child, Christian Olaf. Several months of forgetting male conditioning, and one smile from Christian, gave me a love that was far more powerful. In this child’s face I first glimpsed the face of God smiling on me. A love that gave purpose to every worthwhile effort I had ever made. When Christian was diagnosed with Leukemia, my understanding of love again evolved. Often one hears that God’s love transcends our understanding. I do not believe that is true for parents who suffer their child’s death. Most people can earnestly say that they would trade places with their child in death. It is hard for me to believe that people who have not felt their entire body and soul wretch from watching their child suffer and die, can understand the depth of this statement. Parents who say with everything holy in their souls, "Let me trade places with him", understand this selfless love. A week ago, after Christian had his fourth relapse, I was home. Anders was asleep. Karen and Christian were at the hospital. Flipping channels with glazed eyes, I stopped at this priest discussing the Holy Trinity. He held that the Holy Spirit was the relationship between Father and Son. Something went click. Imagine a God so loving as to take his child’s place in suffering and death. A God so loving that He would give His very life in exchange for giving His child a life of joy, hope and most of all, love. I feel this love, both given and received, is the dominant component of that elusive third part of the Holy Trinity, the Holy Spirit. Why am I rambling on about religion when I should be eulogizing my beautiful boy? Because Christian’s greatest legacy will be how his life resonated God's love with so many of us. With his death, it is easier to see how Christian’s life and soul were dominated by love - that part of the Holy Trilogy that can be a part of us all. As long as we share our love for one another as freely as did Christian, we will be connected with the Holy Spirit, and thus with our Christian Olaf. I would like to lay to rest my own, and hopefully some of your questions, of "Why?" You can rest assured that when I stand before my Lord that I will make this statement, "I believe the death of my son was a gross lack of judgement on your part. I beg you to explain." The priest on the TV also made this statement, "God is a mystery". All we know is that Christian died and that we lived. Why this came to pass is a mystery. Defer onto me getting an explanation. All I need is patience. I have the faith. Now for a right and proper eulogy! There is only one reason to grieve today. Christian is no longer with us. We can no longer tell him that we love him or feel his touch. There are not a few reasons to rejoice, feel proud, feel lucky and feel so much more love than if he had never lived. If Christian is listening, I hope our memories of his ‘early years’ will not make him sad. He was eight and three quarters and did not like to be treated "like a baby". Christian was born on a Tuesday. He was our Christmas baby. I took a picture of him swaddled with a bow next to him. Karen could not put him down several weeks. We loved him so. He was so beautiful. He was baptized in this church. I held him. He cried. I tried to swaddle him more tightly. He cried harder. After he was baptized, and we were still at the altar, Karen told me to hold him facing the congregation. He stopped crying. He had only wanted to look at his new family. He was a light sleeper. While walking him to sleep, his legs had to hang freely. If you made a sound setting him down, his head would pop up and you would have to start all over again. After about a year, he started to go to sleep easier. At this time he learned to climb out of his crib. He no longer needed to cry for us. He was so proud of himself. We were filled with joy every time we heard his little feet heading toward our bed. Christian did not know what to think about Anders for the first couple of weeks of Anders' life. He was angry with Karen. Then we had a bright idea. We allowed Christian to hold Anders. Christian was nineteen months old, but could not have been more proud or loving. They were so beautiful. We were a family of four. For the next several years we enjoyed many of the normal things families enjoy. We knew we were lucky. Christian Olaf
Shortly after Christian turned five, we began the Cancer Treatment Lifestyle. The disease robbed Christian of so many things a child deserves. He bravely endured hundreds of medical procedures, radiation, significant pain and thousands of pills, pokes and exams. He could not often run and play with other children; rather he would sit with adults. The strength we somehow found in Christian, ourselves, our faith, our families, our friends, other Cancer families, the overwhelming support of this and other churches, Christian’s school, medical staff and coworkers at Honeywell, allowed us to deny many things to the disease. In particular Christian:
Christian died on a Sunday morning. He was still fighting for life. He was eight and three quarters. While he lay in our arms dying, the night sky was filled with lightning and the heavens roared with thunder. We told him we loved him hundreds of times. He touched us. He said a prayer. Shortly after he passed, the sun rose to clearing skies. His ashes will be placed in an urn also able to contain ashes of two adults. When our times come, Karen and I will look forward to once again embracing Christian on earth as well as in heaven. Until then we will continue to fill our spiritual vessels with all the gifts and joys this mortal life brings. It hurts so much to know that Christian will no longer add to these joys. He died. His life has been validated with God. We helped him do that with a signature of love and courage. We lived. We must return to validating our own lives with God. It is a mystery why this happened to our beautiful, beautiful, beautiful Christian Olaf. It will always be a mystery.
September 20. Visitation between 6PM and 8PM Tuesday, September 21, at Bradshaw Funeral Home, 678 Snelling Avenue South. Funeral at 11AM Wednesday at Immanuel Lutheran Church, Snelling and Goodrich (about a mile south of I-94), visitation at 10AM. There will be a luncheon immediately after the service. Christian's body will be cremated and there will be no internment. We are giving Christian a kid friendly visitation and funeral. September 19. Christian lost his battle with cancer this morning at 6 AM. He had a good day with the Redmonds at the hospital and family members at both the hospital and at home. He still had enough spark at 8PM to try a trick on the home care nurse. By 11PM he was delirious. We held him through the night and listened to his delirious continuous speech. In seven hours he mentioned bone marrow once and nurses once. Other than that it was a continuous stream of sentences about loving his family and friends and eight and three-quarter year old's interest in Pokémon and beanie babies. He died in our queen bed while we held him and our families surrounded him. His doctor and a nurse were in attendance. Swelling around his heart forced him into heart failure. He died awash with love. Anders woke up only minutes before hand and was able to show his affections to his brother. The three of us rolled him up in a white linen sheet. His end was graceful, quick and without major pain. September 18(4) - WBC:18,000?. We are being sent home today with hospice care. We have told Christian he is likely going to die soon. Christian, Karen and I cried; Anders was in shock. Our nuclear family along with our extended families are giving Christian very good days. WE HAVE NOT GIVEN UP ALL HOPE. As long as Christian is looking as good as he does, and I suspect if he has the breathe of life, we will have hope. Our doctor, along with a very well web skilled friend, poured over about a dozen experimental therapies for Christian. He did not fit into any of the acceptance criteria for studies due to his recent treatments during transplant and the fact that his leukemia is no longer in remission. St. Jude's has a patient in a similar condition, and could not recommend any treatment. Our doctor's partner had a similar case just two months ago and came up empty handed. For Christian we are convinced that any curative treatment would be disastrous AT THIS POINT. By disastrous I mean that the impact on his immune system while it is so weak would almost certainly lead to a painful death during induction therapy. His immune system is that of a three month old infant. It is being crushed by the leukemia. We have started very low level chemotherapy to calm down the cancer such that Christian can have a few more good days at home. We are praying with no shame for a miracle. I prayed that the miracle would begin with his latest spinal fluid biopsy. It came back clear; he had shown signs of CNS disease. I prayed that his current heart distress was due to fluids and not heart damage. An ultra sound indicated it was fluids. He has no obvious infection. The blast count seems to have decreased with one chemotherapy treatment; for which I prayed. We are giving God an invitation to bless us with a miracle. It there is a bus being driven for a cure, God is the one driving it now. Whether you have faith or not, we would so appreciate your prayers for a miracle to cure this cancer. (No conditional prayers please, it is against our faith to put God to the test. Christian has had one miracle in his life already - he was born into a family of love and has lived his entire life surrounded by love.) Please no drop ins. Our refrigerator is stuffed with food and we have no appetite. So please do not bring food. I suspect Christian and Anders would appreciate rare Pokémon cards. Christian's statements: I hope I don't die. I hope God gives me a miracle. I love you Mom. I love you Dad. I love you Anders. I love you guys. September 16(2) - WBC:25,500(45% cancer). The news is horrid. The cancer has consumed 70% of Christians bone marrow. It is crushing the new bone marrow out of existence. The cancer is coming on so strongly that the doctors do not believe they have any treatments that can cure the disease. We are back with Dr. Hilden at St. Paul Children's. She is looking into any experimental treatments that have hope. Christian's new bone marrow is that of a three month old infant. If we were to hit him with induction level treatments he would be more susceptible to infection than ever and would likely loose his life in significant discomfort. The doctor's are arguing to stop curative treatment. The end would come probably within a week. Christian, however, is in a great mood. He is happy. He is making statements that tear our hearts out. He is repeatedly telling us how much he loves us. Most of our extended family are taking time off of work. Thanks to the many employers that are being humane to our child. This child is surrounded by incredible love. As long as he is in such high spirits, and he is not succumbing to infection or toxicity, Karen and I will lobby for a cure. We are ready to throw the towel in, but while Christian's life has obvious spark to it, we will not do so. If you are prone to prayer, I ask visitors to pray for a miracle of God's love. We still have faith. God is a mystery. September 15(1) - WBC:26000, Hgb:7.9, Plt:18,000. The bone marrow biopsy went well. The spinal fluid looked clear. We will not know preliminary results until late today. Final results next week hopefully. September 14(0) - WBC:27000 (30% cancer), Hgb:8.6, Plt: 24,000. It looks like Christian is again relapsing. We are crushed. There is little hope now. It is not clear if is the same leukemia. Pray for the kid. Pray for us. He will be an inpatient again in the transplant unit tonight. A bone marrow will be done tomorrow. September 10(84) - WBC:9100, Plt:37,000, Hgb:9.6. Not much to report. Christian kicked a soccer ball with me last night and rode his bike for almost one half hour. His eating has picked up a bit. We are hoping his IV nutrition will be cut back. This is the highest level of white blood cells he has produced by himself probably in three and a half years. I do not know whether to be happy or worried, as elevated WBC can be a relapse sign. If you send us email, do not expect a response. We will read it and will likely find encouragement in it, but we have little energy to spare for correspondence. We will take every hit on this page as a silent prayer, hope or wish for Christian's health and our family's strength. Thanks. September 7(81) - WBC:5300, Plt:34,000, Hgb:9.0. We enjoyed one summer weekend that approximated normal. It was bittersweet. Christian checked into the BMT unit the day St. Paul schools let out for the summer. We sneaked in a weekend of normal family activity the last weekend before St. Paul schools went back into session. Saturday: As a family we went out shopping at Knox and Home Depot. It was Christian's first outing to take care of chores in about six months. He looked at everything. He wanted to buy a 1000000' spool of weed wacker filament, but settled for something more holy - his first roll of duct tape. Sunday: Karen went to the Renaissance Festival with Ingrid Redmond. (They both really deserved a day away from cancer concerns.) The boys had friends over. We had the Redmonds over for grilled fish and lamb. Christian rode his bike around the block. I got several small house maintenance jobs done. Monday: The boys had friends over. I mowed the lawn. Karen and I got a little gardening done. We went out as a family to hit tennis balls. Karen and I got to hit together for about ten minutes as the boys watched. We went to the newly remodeled and very trendy "Bread and Chocolate" deli for ice cream. We picked up the house. We prepared Anders for going to school today. It was gut wrenching to see Christian watching Anders excited about the first day of school knowing that was not available to him. September 3(77) - WBC:5500, Plt:32,000, Hgb:9.9. The twice a week clinic schedule may just work. The appointments seem to be about one hour rather than three hours. We need to do more at home though. We have been scheduled for his 100 day follow-up exam Sept 20 and 21. It is two half days. Christian will have surgery to replace is catheter that hangs out his chest with one that is hidden under the skin on his chest. This will mean he can go swimming again. He will also have biopsies of his sinuses, bone marrow and spinal fluid taken. Karen and I got out to see Romeo and Juliet with our neighbors and also enjoyed dinner at the popular Pazzaluna restaurant. August 30(73) - WBC:4400, Plt:26,000, Hgb:9.9. They are going to set us up to come in only twice a week, giving his Ampho-B IV at home three times a week. August 29(72) - WBC:4200, Plt:26,000, Hgb:10.6. Here again is some hope his blood system is making progress toward being self-sufficient. We are back to five out of seven days in clinic. August 28(71) - WBC:3500, Plt:22,000, Hgb:10.1. We will be having a full weekend in the clinic. They are watching some of his blood chemistry levels very closely. We had dinner with the Redmonds last night. There is some signs that Malcolm's tumor is decreasing in size. He looked, sounded and moved wonderfully. August 27(70) - WBC:3200, Plt:28,000, Hgb:7.7. I guess after having a well deserved sleepover of his cousins Leif and Elliot, Christian must have consumed a significant amount of red blood cells (Hgb). We are in clinic right now, he will be getting a transfusion of Hgb. It means a six hour day in clinic. I do not know if I am happy or sad that this is the first vacation day I have taken in three months. Things have been going well enough that digitizing new photos has been a low priority. There are several new ones from a few to many weeks ago. August 25(68) - WBC:4100, Plt:33,000, Hgb:8.6. Yesterday Margaret and Peter, friends from Children's St. Paul, paid a visit. Christian and Anders were waiting patiently with whoopee cushions carefully placed. Christian was quite talkative. He discussed things about the BMT inpatient experience he had not spoken about to us. While we took a walk last night, kids on bikes, Christian heard us talking about someday Karen going back to work. Christian, Mr. Big Ears, chimed in, "Yeah Mom, get a job!" Christian did not vomit Tuesday, but has already vomited three times today. For the first time his platelet count went up between transfusions. His hemoglobin is no longer dropping like a rock. Although it is falling, it is falling at a much lower rate. August 23(66) - WBC:3800, Plt:24,000, Hgb:8.8. We made it through the entire weekend without going anywhere near a hospital or clinic. Saturday approached approximating almost normal life. Christian walked over to a friend's house and played there a couple of hours. He had the same friend over to our house. Anders played with a neighbor kid. Karen went to a baby shower and went to a movie with a neighbor. I played a three set tennis match, worked on the porch floor, mowed the lawn and spent some quality time at Seven Corners Ace Hardware. Christian's transfusion rate seems to be dropping. We are _not_ scheduled for a transfusion this Wednesday. Christian went to Creative Kidstuff and the grocery store on Sunday; this was his first excursion into public areas (excluding hospital/clinic) in three months. August 19 - One of this page's faithful noted that I have gone cold turkey on updates. Sorry. I am going back to work about 70% time and scraping the front porch. These duties plus being one of Christian's nurses, has left me getting to bed at about 11:30PM and with not much time for updates. Christian is busy being as much of a kid as he can. He is having several healthy friends over. He is getting downright hairy - an artifact of one of his drugs. His hairline is just above his eyebrows, which are thickening to stereotypical Russian dimensions. He has hair on his chest, which makes peeling his catheter site's dressing quite painful. You can see where his beard is hopefully going to be. Once he is off the anti-GVH drug, he will go back to being a regular kid. The added hair is like dark peach-fuzz 1/8" to 3/16" long. If anybody knows of casting for "I was a third-grade werewolf", let us know. Yesterday he was dancing in the kitchen, jamming to the "Parent Trap" soundtrack. He is running again, although it could be considered hobbling with style. Malcolm's lung tumor is still gaining ground even under radiation therapy. They are widening the radiation area and will hopefully be using an experimental therapy by Monday. Prayers and thoughts of hope for him and his family would be appreciated. He is in good spirits and reasonably active. August 18(61) - WBC:4900: Christian saw the ENT guy again. They took a culture of his sinuses. There is a black spot in one of his sinuses the ENT is watching closely. During the exam and culture (which involved notable discomfort on Christian's part), Christian sneezed several black things out, which may clear up the problem. August 16(59) - WBC:3900. August 14(57) - WBC:3400, ANC:2000. Christian has been at a couple of parks in the last two days. He ate a bite of chicken. Christian and Anders received a cornucopia of Pokémon stuff from the Share-A-Card group that has a Web site for him (see below). Christian went five days without vomiting. One of his IV treatments has been discontinued, as have a couple of his oral medications. His anti-GVH medicine has begun to be tapered off. This will reduce the need for at least one supporting oral medication. We have some hope to be off of the at-home IV treatments before he gets his catheter switched over. Christian's hair is growing back in. It is darker than before. Supposedly this is a temporary effect of the drugs he is getting. As long as it stays there for more than a few decades, we do not care if it comes back green. Tomorrow Karen and I will attend church together for the first time in about three months. We also go into the clinic for more red blood. In the past few days he has chosen to eat a growing variety of food. It still totals about a couple of tablespoons in volume. August 12(55) - WBC:4300, ANC:2500. Christian rode his bike yesterday late in the evening. They are starting to taper his anti-GVH drug. He has outgrown his catheter. This is causing problems with how well it works. He was destined to get what is call a porta-cath, which is a catheter that resides under the skin and is accessed with a needle through the skin. This is pushing up the date at which this change will happen. Christian will likely have surgery in the next couple of weeks to change over. It is easier to have high frequency access, like we have now, with the type of catheter he has - a dual-lumen hickman. When this frequency goes down, it is easier to have a porta-cath. It requires accessing at least once a month, rather than once a day, and it is easier to do stuff like go swimming and run around without a shirt on. August 11(54) - We have had a great couple of days. We had dinner with Malcolm's family. The kids had a great time. We went to a playground. Christian has been very animated. I will get into work about three times this week. We also attended a neighborhood block party. Christian did more than a few kid things, included jumping on a miniature (3' diameter) trampoline. He is much happier without the bag of fluids tethered to him during the day. I will probably update this page less frequently now - at most every couple of days. This is in sync with our clinic schedule. We are busy trying to have something of a summer with the kids, which puts updating at a much lower priority. Things are not changing as rapidly as a few weeks ago, so there is less noteworthy things happening. August 10(53) - WBC:3800. August 8(51) - WBC:4700, ANC:2300. We have passed the half way point to the big 100 day milestone. We had another dinner at home, made at home, with all four of us at the same table. It was the second morning in a row that we slept in. We walked up and down the block with Christian. His Hgb is dropping again; we will likely get a double transfusion tomorrow. August 7(50) - No blood counts today be cause we have the day off from the clinic. We used the extra "free" time to sleep. Sleep is what we need the most and nobody can help us with. Nights are something of musical beds. Christian needs to get up several times a night due to his IV TPN that is something like a liter and a half of fluids. There is a second website on Christian. It is hosted by a group called Create A Card Friends, a cyber community that make cards for sick kids. Christian is receiving cards from around the country. Christian is the kid featured for August. Granny M arranged this through her church contacts. The site is: http://members.tripod.com/~cacfriends/shareacard/august.html Thanks to all the folks who have sent cards. Christian and Anders have enjoyed them. Note on Malcolm: He is home from surgery. They were not able to remove all of the tumor. He begins radiation on Monday. August 6(49) - WBC: 4000. For the first time since transplant Christian's Hemoglobin (Hgb) count went up, though slightly, without transfusion. August 5(48) - WBC: 4800. Christian is getting about three hours a day free of being tethered by any IV lines. August 4(47) - WBC: 4900. August 3(46) - We seem to be getting some relief from the medication schedule. All IV medications have been moved to 12hr schedules, which allows windows for Karen and I to sleep. Several small modifications in minor clinic issues may help us coordinate home and clinic IV treatments. Cousin Adam spent the afternoon here. This type of visit is definitely why it is benefit to be home. Christian was more animated and more interested in trying different foods just because another kid was around. Ironically the refrigerator overload was solved by the power cooler I was given for the South Dakota trip we canceled due to the BMT. It is actually working quite nicely. August 2(45) - WBC:4600, ANC:2700. I have not been able to update this web page due to the exhausting demands of Christian's outpatient care. If we are not giving treatment, Karen and I are preparing for or accompanying Christian to treatment. It was a seven hour day at the clinic. It is best for Christian, but Karen and I are being drained. We will try to get some home nursing help tomorrow. As we get the routine down, it is getting easier, but not much. We had anticipated discharge as a relief; it was for about two hours. It was a milestone; it was also a significant and unexpected increase in the active responsibilities we have. I probably will not update again for several days. We believe the treatment schedule will ease in about two weeks. The clinic is a surprisingly mixed bag. I thought the BMT unit was ground zero (the point at which nuclear bombs are detonated). It is not. The clinic is. The looks on the patients or their family members after a bomb is dropped is haunting. You hear snippets of conversations about biopsies or scans and realize there is somebody hanging somewhere between mortal fear and mortal hope. That somebody is in the next exam room or the next transfusion bay. They look much like Christian; they are bald and very tired. It sucks. Soon we will be hanging there again. Christian was allowed to walk about for about thirty minutes without an IV pole (due to an IV scheduling hole). This was the first time he was not tethered in about eight weeks. He had some time at the hospital playground and climbed a small pipe structure and went down the slide a couple times. We celebrated Anders' seventh birthday. August 1(44) - WBC:4? We celebrated Anders' seventh birthday at my sister's place. July 31(43) - WBC: 4500. Christian ran through the sprinkler late in the afternoon. It was hard for him to run with his weak legs and 10-20lb IV backpack. Karen and I got out to dinner to celebrate our eighteenth while Granny M graciously watched the kids (her middle name actually is Grace). We again did not get to sleep until about 2AM due to IV treatments for which we are now responsible. July 30(42) - WBC:4200, ANC:2200. Karen and I were somewhat stunned at all the IV supplies and treatments that were delivered at our house last night. A snafu in scheduling did not provide training on the equipment until 11:30PM. We had finished our IV duties by 2AM. Christian must have this backpack with him with the pumps and fluids. The pack weighs about 20 pounds. The IV solutions that needed to be refrigerated consumed about 30% of the refrigerator's volume. So the next two weeks will be very demanding on Karen and I. We have clinic visits every morning, seven days a week. We had two separate visits from RNs today. We have to give him about twenty pills a day at specific times and he is always getting IV fluids. On the bright side, Christian's spirits are noticeably higher. He has eaten small amounts, very small, repeatedly during the day. Baby cereal, baby food and frozen peas were accepted. He had some water play in a sprinkler. We saw him actually run, although at a snail's pace. We played a great deal of PlayStation today. It was a good day. A note on Malcolm: his cancer is back. He had a great time in France for four weeks. His family and doctors seem undaunted. July 29(41) - WBC:4200, ANC:N/A. After seven weeks, almost to the hour, Christian is being discharged as an inpatient.He is coming home with an IV stand and plenty of stuff to go with it. The doctor attending indicated he is being discharged with many more IV medications than is typical. It will be a full time job attending to his needs here at home. This is hoped to speed his recovery by peaking his interest in normal things, such as eating and moving around. He will have to wear a mask while outside, but need only be limited by the IV while inside the house. We do not want any dropin visitors. It can be anticipated we will return to the clinic every day for the next several weeks. Christian is still getting multiple transfusions a day. Any fevers that are higher than low grade will bring Christian back as an inpatient. It will be a joyous night to sleep with our whole family at home. July 28(40) - WBC:5400, ANC:3800. Christian slept well enough. He ate a small amount. His oral meds were cut back to only the essential prescriptions, under the assumption this would be a better approach at his nausea. July 27(39) - WBC:4100, ANC:N/A. Another day in the BMT. Not much to report. No strides forward, no steps back. A snippet of a conversation in the hall reaffirmed that we are living in a tough neighborhood. There are things much worse than the severe mouth sores. Other patients are loosing body parts in their fight to survive. We have been very fortunate to have avoided any serious infections. July 26(38) - WBC:4700, ANC:N/A. Christian was given a four hour pass to go home today. We had dinner (sort of) as a family under our own roof for the first time in seven weeks. Nausea and bleeding continue to be the issues that command our attention. Christian spiked a 101.5F temperature last night. This will keep him as an inpatient for at least another 48 hours. Dialog of the day: John (to Anders): We have a surprise for you at home. What could be the biggest surprise you can think of? Nancy (hosting Anders at the time): Could it have anything to do with your birthday? (Anders' birthday is on 2 August.) John: No. Anders (after pondering for several seconds): Does it have anything to do with Christian? John: Yes. Anders: Christian is home!!! July 25(37) - WBC:4000, ANC:2400. Christian will not be released until he requires at most one transfusion per day and does not require any IV fluid flush. These IV treatments are for his bleeding bladder. It looks like it will be another several days. He has been playing PlayStation more frequently for the past several days. He has been smiling more. Nausea has remained a part of the picture, though it seems more in control. He has ridden his bike each day for the past several days, his outings becoming longer each day. Right now he is laughing like a normal kid while doing something with a couple straws sticking out of his mouth. July 24(36) - WBC:6100, ANC:4500. We had a great night. Other than Christian passing basically pure blood in his urine and blood clots half the size of AAA batteries, the night was without event. I think it may be a whole 18hrs since Christian vomited, after vomiting yesterday afternoon (knock on wood). Karen was able to sleep nine hours at home. July 23(35) - WBC:4500, ANC:3100. Christian slept better last night. Karen got 5-6 hours of sleep. He has not vomited for about 24 hours. His urine was again bloody, but then again cleared. This is the end of the sixth week as an inpatient. July 22(34) - WBC:8100, ANC:7000. Christian, during his 1:00AM relaxation bath, repeatedly dunked his head under water just for the fun of it. His motto is, "Bye, Bye - Monday", indicating his intent to be discharged Monday. He has had no blood in his urine for almost 24 hours. He is again off of Fentanyl. The big increase in WBC may be an indication of an infection; he had a low grade fever last night. He has not really vomited in over 12 hours. He has had another spoonful of food yesterday. He is sitting up and standing much more today. July 21(33) - WBC:4100, ANC: 3100. Again nausea kept us very busy. The odds are it is withdrawal symptoms. He will be given small hits of Fentanyl over the next few days to reduce withdrawal symptoms. There was definitive from the bone marrow biopsy last Friday. All the cells tested were genetically Anders. I would assume this means that the blasts found were also Anders'; hence, they are not leukemic. So Christian is now a hybrid human; part Christian, part Anders. It is a good time to thank the many people who have been sending Christian and Anders mail (not email, though there are those letters, I am talking about mail that requires stamps). There have been notable groups from our church, Lutheran brotherhood and the St. Catherine's retirement home for nuns. These cards have perked up Christian repeatedly. Thanks. July 20(32) - WBC:6300, ANC: 5900. We were kept busy most of the day and night with nausea, which reigned supreme (or is that rained?). His Fentanyl continuous drip was reduced to zero. He tested positive for something and is back on a couple anti-biotics. July 19(31) - WBC:4800, ANC:3600. It may be the nausea could be due to withdrawal symptoms from the Fentanyl. Of course it could also be from the growing number of oral medications they are trying to get him to hold down or recovery from all the intestinal damage from transplant. Nice stable blood count though; I cannot remember once in 3+ years counts being so close two days in a row. July 18(30) - WBC:4800, ANC:3600. Nausea continued to dominate the day. Late in the evening Christian suffered severe muscle cramps in his face and legs. This was likely due to one of the anti-nausea medications. His mouth cramped in the open position. This freaked him, and us, completely. He suffered this same thing several times during the night. It was lucky for Christian this was Karen's night at the hospital. I was in a non-linear mode during the first episode of cramping. July 17(29) - WBC:3800, ANC: 2900. We can expect his counts to bounce around a bit. Karen and I were to sleep at home together last night; however, Christian became quite nauseous at about 11PM. Karen replaced Christopher at the hospital. Christian has been sleeping for the better part of fifteen hours. The anti-nausea medicine they give him makes him very sleepy. July 16(28) - WBC:5100, ANC:4100. Christian appears to be producing his own white blood cells without assistance. We will next be looking for red blood cells to come in. We will not have results back from the bone marrow biopsy until next week. Preliminary reactions to the biopsies were encouraging. Christian regained a childlike quality: mischief. In an effort to find out what Karen and Kirsten were talking about outside his door, Christian got a stethoscope and listened to the door. He had a few bites of food! July 15(27) - WBC:3900, ANC:3000. Riding his bike, swinging outside on the hospital swing set, whistling and playing Playstation were again parts of Christian's life. He still is nauseous at the sight of some foods and has no interest in any. He slept a great deal. He still is passing blood in his urine. He is brushing his teeth with toothettes (a kind of foam toothbrush). His Fentanyl dose is about half of its maximum. I got about eight hours of sleep while in the unit last night; Christian got about twelve. Christian has his day 28 bone marrow biopsy tomorrow. He has been here five weeks. A little girl on the unit lost her fight yesterday. We have been fortunate. July 14(26) - WBC:N/A, ANC:N/A. Christian road a bicycle about the unit for about a half hour. He visited the gift shop twice today, once on a bicycle and a second time walking. His mouth looks almost normal now. My father was released from his hospital stay. A little angioplasty was all he needed. New pictures. July 13(25) - WBC:5300, ANC:4400. Christian seemed to turn another little corner overnight. His mouth is looking even better. The swelling in his lips is noticeably less. He road a three-wheeled bicycle about the BMT units. His cousin Leif visited. July 12(24) - WBC:8000, ANC:7000. Today Christian's GCSF (a protein that stimulates neutrophil growth at the expense of other blood components like hemoglobin and platelets) will be discontinued. Expect a drop in WBC over the next few days. His Ampho nasal spray and one antibiotic were also discontinued. The attending oncologist stated that if it were not for Christian's Fentanyl pain control Christian could go home today. It will probably take a week to wean him of this narcotic. July 11(23) - WBC:4500, ANC:4000 - I watched a couple movies with Christian. Aunt Kirsten and Uncle K.C. visited. I then spent the evening with Anders at home. I found out late in the evening that my father had checked into the ER with chest pains on Saturday morning. My parents had shielded me from the additional stress by not telling me until initial test results were in. It does not appear that he had a heart attack or that there is any heart damage, but enzyme traces indicate something is happening. May Dad is 75. July 10(22) - WBC:3500, ANC:3100. Christian's lips are once again pink, albeit several shades of pink; this is much better than black. The whites of his eyes are almost entirely white; this is much better than almost entirely red. He is dealing with nausea and diarrhea; there are multiple reasons for these, including withdrawal from narcotics and GVH. He laughed today for the first time in several weeks, thanks to a gift of Godzilla books from a friend. One of the harsher medications he receives, Ampho-B, has been cut back to every other day. For Christian today marks a full month confined to this single room. July 9(21) |
