Karen’s Story: The collected updates
A final, personal note posted on: 10/7/2001
There are no further updates necessary about Karen. Forever and ever, she is now perfectly fine. This will be the last entry I will write for her in this way. The Updates contained in this link will be gathered in a new link called “Karen’s Story” in the newly designed website soon to appear at this same address, www.carnsnet.com. ———I have needed this month to step back from writing about her, in order to learn how to live while missing her. Everytime I logged on and opened this page to add an update, I wanted blood counts and doctor’s reports to give you—something to indicate she was still alive. But now I can honestly rejoice that there is not one more blood test, not one more biopsy, not one more hospitalization to report to you. She is healed–perfectly and completely. And I am happy…most of the time! Thank you for reading her story here. I tried to be her voice so you could hear her spirit and be lifted by her courage. Now each of us can hear her voice inside our hearts if we listen. My sister chose to live fully up to the hour of her death. May we all do the same.
Sunset at Sea – September 6, 2001 posted on: 10/6/2001
Kelly carried the roses. Tom carried the urn. Earlier that afternoon, Katie, Christy, Tommy and Kelly decided that pink, red and yellow roses would be beautiful. Also earlier that afternoon, Tom and the children quietly prepared the urn, shared a story, “The Next Place,” talked about Mommy, and prayed for each other. +++++ Now we were on the beach looking seaward waiting for the boat, and glancing skyward hoping for a break in the clouds. There HAD to be a sunset reflected on the sea–today of all days. +++++ Dressed in their best, and barefoot on the sand, they walked to water’s edge as the boat slid onto the beach rocking in the surf. Kelly carried the roses. Tom carried the urn. Andrew and Paul, the Australian crew who looked cautious and quizzical about having been called into service for this event, helped them aboard and the boat headed out. +++++ From the beach, Jessica and I waved goodbye until they were lost to sight. The sky darkened, thunder rolled and the rain fell in a torrent. We ran for cover, expecting a quick return for the boat and an unsuccessful voyage. +++++ An hour passed and the boat came into view just as the rain was stopping. Tom and Kelly’s arms were empty. We watched Paul and Andrew exchange hugs with all as they came back to land. With smiles, light-hearted steps, and excited voices, the kids ran to tell us what happened. +++++ Andrew and Paul didn’t know quite what to make of it, they said, but they were very nice. Once they understood the need for a sunset, they plotted a course and steered the boat out from under the clouds, and the sun came out— right before it set in a blur of muted colors. Her husband lay the urn in the reflection just as she had asked him to do, and a wave caused it to sink quickly, but still visibly, in the transparent water. Her children showered the dispersing ashes with rose petals. Their colors matched the light exactly. +++++ The kids told Andrew and Paul about Mom on the way back to shore. Paul spoke haltingly of his “mum.” When they go home to Australia they will tell Karen’s story. The ripple effect of her life is far-reaching still. +++++ The evening continued at a special restaurant where we toasted Karen and told more stories. Jessica presented each of us with a beautiful, engraved remembrance and a personal note. +++++ Heaven touched earth.
A link for the Memorial Mass posted on: 8/29/2001
Thank you for your overwhelming presence at Karen’s Memorial Mass last night. We anticipated a full chapel but not like that! Thank you for standing, for being understanding and patient while uncomfortable, and for staying. Because many of you could not hear the letter, the Liturgy of the Word, and Tom’s remarks, we will be creating a link on the home page so that you can read these in their entirety. Hopefully, this link will be available in the next day or two. +++++++++++ How wonderful to meet face to face after sharing our reflections in the printed word in Karen and Tom’s Guestbook. This site has become a touchstone for an ever-widening community. Our hope is to broaden the site’s focus to include information about Karen’s dearest charities,–the “Light the Night” walk-a-thon is 9/20 so join the team or sponsor a walker!– parenting and education, blood and platelet donation, and an occasional update on the Carns Family. Keep logging in! Don’t lose touch now…we would miss you!
Memorial Mass: A Tip for Parking posted on: 8/26/2001
Please plan to arrive early. We expect a large crowd, and the parking and seating will become more difficult as we near 7:00. The best place to park is in the Cintas Center lots. Parking here does require a 4-5 minute walk to the Chapel; be sure to calculate that into your arrival time. You can look forward to a very, short walk to your car after the reception, though! We pray for everyone’s safe travel and timely arrival.+++++++The reception Banquet Room is easy to find. After Mass, return to the Cintas Center and enter through the main doors. Turn right and keep walking until you pass through double doors. You will immediately see the entrance to the banquet hall.
Memorial Mass: A Call for Singers posted on: 8/26/2001
As Karen planned this Mass, she envisioned the goodness of life being celebrated in prayer, in community and in SONG! She and the family chose the music, and most of it is familiar. HOWEVER, the closing hymn she chose is very close to her heart, and may not be well-known. “Jerusalem, My Destiny” was recorded on a tape Father Dan made for Karen and Tom, and Karen listened to it so often she had his words memorized. It did soothe her. THEREFORE, to achieve Karen’s goal of vibrant, full singing, especially on this closing hymn, we are inviting anyone who would like to participate in a “choir” to arrive by 6:10, be seated in the section of pews closest to the musicians, and rehearse this song, as well as the others. You would provide the backbone to the community’s singing, but in no way excuse any member of the community present from Karen’s HIGH expectations! We hope to see the “choir” pews full!
Reflections from Tom posted on: 8/22/2001
“Have faith in yourself because you DO know how to handle tears and fears, and bring lots of joy and laughter.” Karen wrote this to me in my Father’s Day card. I have read her journals and cards to me repeatedly in the last few days. The Guestbook, e-mails, and cards from friends and family have been a great source of strength for us. Your thoughtfulness and warmth are still overwhelming. The kids and I read your notes together and they have led to some great healing discussions. +++++ The Memorial Mass and reception are coming together. The kids are looking forward to Tuesday since Karen did the planning. Every family decision raises the question, “What would Mom want?” and it is comforting to know that she has already told us. The grief they feel is, at times, overwhelming, but it is amazing to see their understanding of their Mom, their love for her, and their pride in her. The five of us went out to dinner and a movie Tuesday, and each of us felt a sense of, “We can do this!” We can do great as a family and Mom’s spirit will always be with us. +++++ Bedtime is a sad, but healing time. Karen believed that spending 15 minutes alone with each child at the end of the day could be the most important 15 minutes of the entire day. They loved the tradition of nightly hugs, prayers, stories of the day, laughs, and discussing the books they were reading. That one hour at the end of each day had an incredible impact on them and it is one hour I will be sure to continue. Karen taught me so much about parenting. She told me anyone could be a good parent if love, effort and unselfishness were at the heart of their life. I would be lost without her wisdom and I feel so fortunate to have had a 17-year lesson. +++++ The night Karen died, I promised her that we would “use” our family and friends. She always valued friends and told me to use and accept their God-given talents when I needed them. She told me that in 17 years, I never had any desire to do home repair, and she suggested that starting such things now would lead to time away from the kids, as well as a high probability of injury. She said when Kelly goes away to college, I have her permission to start tinkering. I told her I’d be playing GOLF then, not tinkering, to which she replied, “At the age you’ll be then, we’re back to that injury thing.” Friends, be warned: if I need anything requiring tinkering, I’m calling. +++++ The kids and I are blessed to have all of you. We knew Karen’s extraordinary joy and love. We look forward to celebrating Karen’s life and spirit with you at Xavier on Tuesday. God bless you. Take Karen’s philosophy and give your loved ones that 15 minutes.
Karen’s Memorial Mass posted on: 8/20/2001
Karen’s Memorial Mass will be celebrated at Bellarmine Chapel on Xavier University’s campus on Tuesday evening, August 28, at 7:00. There will be a reception immediately following in the Banquet Hall of the Cintas Center. If you attended the Healing Mass, this is the same location, except for a larger space in Cintas. The nine day interval between her death and the Mass may be puzzling. Let me explain. Karen and Tom talked extensively, aware of how the message and meaning inherent in their decisions would affect many people, especially their children. They both value Catholic education, especially their XU experience, assuming active roles in their parish school, and supporting the St. Bernadette Scholarship Fund. It is no surprise that Karen specifically and adamantly requested that her Mass be offered at Bellarmine and friendships be celebrated at the Cintas Center. Tom is determined to honor this request. Students are returning to campus this week and special programs have obliterated chapel/Cintas availability. After several stressful hours of searching for alternative places so that the Mass could be sooner, Tom took a deep breath and realized that to wait a few more days and allow Karen’s wishes to become real was the most important consideration. She requested that her body be cremated, so there is a freedom and flexibility in regard to time. Tom invites everyone to celebrate his beloved Karen with him and his children, on Tuesday, August 28 at 7:00 pm.
Sunday brings peace posted on: 8/19/2001
Early this morning at 2:35, with Tom at her side, Karen passed through death to eternal life. Tom and the children ask for your prayers as they spend time alone today comforting each other. ++++++++++We will let you know about Karen’s Memorial Mass as soon as we can. +++++++++++++We share our faith in good times and in bad. We share the pain of Karen’s loss, but rejoice that she is at peace. LIFE is at the end of our journey. LOVE is what endures.
A Restful Friday posted on: 8/17/2001
Karen rested comfortably today in the sunshine and breeze from the downstairs window she insisted upon opening. She felt strong enough to be wheeled to the deck for a quick birthday lunch celebrating Jessica’s 18th birthday. Christy did the driving today…oh my! Because she sleeps fitfully, with labored breathing, Karen’s need for quiet time and napping increases every day, but her spirits remain determined and her smile sweet and always so welcoming as the kids snuggle in for hugs. She tires very easily but will try to hide this. Pre-arranged short visits are best. Long-distance telephone conversations mean that Tom often ignores the “beep.” Please don’t be distressed if no one answers your call. Tom prints e-mails for Karen, so an alternative to calling would be to e-mail them by clicking on the pink envelope at the top right corner of this page. Tom may even learn how to “reply” if we’re persistent!
A Wednesday Message from Tom posted on: 8/15/2001
Sunday night at our home Mass, Father Dan Noll explained to us that communion-Eucharist-is the food that will provide us the strength to journey past death into everlasting life. He explained that heaven is the final destination for us all, and with the kids’ eyes fixed on him, he said that “Mom” is going to have this joyous reward first–before the rest of us. The smiles on the kids’ faces at that moment, as well as during our follow-up family meetings, convince me that they truly are happy for their Mom. There have been many tears, but we use these moments of release to get rid of the feelings that Tommy describes as a “bunch of baseballs in my stomach.” Dr. Mannion and our Hospice nurse, Betty, feel that our family has from a day, to perhaps as much as two weeks, to be togther. It’s impossible to say. Karen’s high, and rising, white blood count has shortened the original estimate of 3-6 weeks. Dr. Mannion and Betty have been extremely kind and compassionate. We are blessed to have them with us. Karen’s strength varies drastically but her attitude is inspiring. She is upbeat and all her concerns are for everyone but herself. She wants to visit with family and friends. It is best to have short, ten-minute, one-on-one visits. We are blessed with many friends and I find it difficult to return calls and schedule visits. Please bear with me. Karen’s sense of humor is still strong. Last night I was watching her sleep. The third time she woke up to find my eyes still intent on her, she told me in no uncertain terms to, “Go to sleep!” Then in total, typical exasperation, she cut to the chase: “If I die tonight you will have a long day tomorrow with the kids…and if I DON’T, you’ll feel pretty silly having stayed up all night watching me breathe.” She also asked if the wheelchair had been delivered yet so that she could go to the one-pitch tournament at St. B’s this weekend. +++++++++++Our goal is to keep her pain-free and comfortable. Her goal is eternal life. I know in my heart of hearts that her goal is met and she will be fine. Thanks again for all your love, support, and prayers. Tom
Cookware Pick-up posted on: 8/14/2001
Beginning Wednesday, please call Traci Chandler to make arrangements to pick-up your dishes that some of you cooks have probably been missing for quite awhile! Traci lives at 3809 Red Fox Dr. in Amelia. Call her first at 513-943-9703 to be sure someone is home before stopping by, or call her if you need your cookware delivered to you. Thank you so much for the long succession of thoughtful, delicious meals served with love to the Carns family.
Monday’s doctor visit and requests posted on: 8/13/2001
Karen and Tom saw Dr. Mannion today and he confirmed that the biopsy results showed that 100% of Karen’s marrow has been consumed by the lymphoma. As you can imagine, hearing this cold fact was tough. Karen and Tom have absolute confidence in Dr. Mannion, and the expert colleagues he has been consulting in the past year, and accept that they have done everything possible at this time to fight this disease. Karen’s blood counts show white cells at 65.0, a rapid rise that was expected since Cam-Path was stopped. However, her neutrophils are also rising, today at 6, which means she may have more resistance to infection than during treatment. Remember, Cam-Path was killing the good cells along with the lymphocytes. Her platelets are rebounding slightly to 10, but her hemoglobin fell to 6.2. Karen will receive whole blood transfusions at Christ Hospital on Tuesday, but because she cannot hold on to the platelets, these transfusions will stop. She has been relieved of the ordeal of giving herself neupogen shots and this may help the bone pain to subside. Dr. Mannion said that there is no way to predict the future. She and Tom are “doing their work.” They are talking to each other, talking to their beautiful children, and prioritizing where to put their energy. The Mass on Sunday night was perfect, according to Tom. Comforting, inspiring, sacred and simple prayers and presence enriched the family and brought laughter (ask Kelly how she liked the communion wine) and peace. A lovely dinner with Father Dan followed (thank you, Laurie). Karen is still reserving her energy for the work she has to do, so please call Tom and he will tell you a good time to visit for 10 minutes. Be patient! Family and friends sharing life has always been at the heart of this family, and that will continue! *********COOKWARE pick-up: All of the dishes that brought delicious dinners to the Carns family are no longer at the Carns’ house. They ran out of room! If you need to claim some cookware, watch this site for info. Your dishes have probably been taken to Jenny’s or Traci’s and I’ll let you know for sure ASAP when and where to retrieve them! Thanks!
Sunday posted on: 8/12/2001
Greetings on Sunday morning! Karen and family are grateful for the calls and messages of prayer and support. She is “hooked up” with a steady stream of oxygen now and says that it is helping to ease her breathing and soothe her throat. Karen is focused on completing some things that only she can do, and appreciates time alone, and time with her family, when she’s awake and energetic to finish these. Please be patient about visiting right now and be sure to call first. ***** Father Dan will be saying Mass at the house today for the family at 6:00. If you are reading this on Sunday, PLEASE DO NOT TELEPHONE after 5:45 today. Karen and Tom want a peaceful, prayerful time this evening. Thanks! We’ll keep you posted about how everyone’s doing, and how we can all help.
A Letter from Tom to Family and Friends posted on: 8/10/2001
Dear family and friends, I thought this update on Karen should come from me. I intended to post this sooner, but I have found it to be very difficult. ———-In the past couple of weeks, the cancer has been very aggressive. Karen’s lymph nodes have doubled in size, and as you know, her blood counts have not rebounded. Dr. Mannion is sure that this is because the Cam-Path is not having the effect we hoped for. Karen is also experiencing increasing pain, shortness of breath, and minimal or no response to platelet transfusions, resulting in severe bruising. These and other problems are why Dr. Mannion has decided to stop all treatment. He advised us to talk and prepare our children, because there is nothing more that can be done. His best guess is that Karen has three to six weeks of life. Dr. Mannion said her fight has been courageous and inspiring, but it is now time to consider pain medication and to consult Hospice.————–This past Wednesday, we told the kids what to expect. Karen said this was the most difficult day we will ever endure. The news was both heartbreaking to the kids, and so hard to understand. They each had different reactions, and in my opinion, remarkable responses. They struggle with God’s reason for this, and I’ve told them I’ve spent the last fourteen months looking for answers that will not come. Karen said at the Healing Mass that our family has learned a lesson: “To be loved, and to love, is all that matters.” Karen’s love has touched us all, and will always be with us. ———–The remaining time we have is precious. Karen does want to see all of our family and friends. Please call me to set up a short visit when you can, with the understanding that our schedule, and her health, are in constant change.—————–Since this is the first time I have written an update, I do want to say, “Thank you.” The prayers, help, gifts, time, and support have been truly unbelievable. The other mystery that God has thrown my family’s way is, “Why have You blessed us with so many caring and loving friends and family?” We will not search for the answer, but will thank God in our prayers. —————I will never be able to appropriately or adequately express my thanks to all of you, but please know what a gift each of you has been. ————–Thanks and God bless. Tom
Wednesday 8/8/01 posted on: 8/9/2001
Dr. Mannion completed Karen’s bone marrow biopsy by 11:30 and she’s now home resting, with some discomfort, but she says it’s manageable. She is still very, very tired. Blood counts today show white cells at 1.0, with .4 neutrophils; platelets at 4 and hemoglobin at 10.1. No transfusions are scheduled. No treatments are scheduled at this time. Tom said the biopsy was a “dry draw” (no core fluid) and in the past this has not promised a good result. Karen and Tom have an appointment with Dr. Mannion on MOnday at 12:15 and may not know the results of the biopsy until then. We’ll keep you posted. Let us pray for peaceful hearts and restful spirits. Thank you for reading, for praying, and for loving the Carns family as you do.
Monday News 8/7/01 posted on: 8/9/2001
First, BLOOD COUNTS: white cell count at 2.7 (slightly up), with neutrophils at .1 (slightly down). Platelets are very low at 4, but no transfusion today, to Karen’s relief. Hemoglobin is good at 11. RETURN OF AN OLD PROBLEM: A certain amount of calcium is normally present in the bloodstream and it is absorbed by blood cells before it becomes problematic. You guessed it….Karen has elevated calcium counts and for her it is a problem. This has happened before, and the cause is uncertain, but the result is grogginess and tiredness. Today Karen received treatment to lower this calcium, and hopefully some of the fatigue that has been frustrating her so badly, will be alleviated. BONE MARROW BIOPSY: In lieu of Wednesday’s treatment, Dr. Mannion will biopsy Karen’s bone marrow at 10:30 am. The result of this biopsy will define the next few weeks. Before Cam-Path, Karen’s marrow was 95% malignant. Dr. Mannion would like to see the malignancy reduced to 70% before continuing with the scheduled 7th and 8th weeks of Cam-Path. The treatment is very hard on Karen, the risks are huge, and there must be a comparable good effect. Dr. Pavletic in Omaha, needs a 50% or better improvement for a transplant to be considered. Karen says a bone marrow biopsy “isn’t that bad,” (she’s already had several) but please keep her (and Tom who watches) in your prayers on Wednesday morning and as they wait for the results which could be available by Thursday, definitely by Friday. KAREN”S WEIGHT: She thought long and hard before giving me permission to discuss this! Karen has always been a bird: eating a little often, burning it up, and staying close to the bone. She has no weight to lose. She eats with grim determination to stay in triple digits, even when food has lost its taste, or she lacks the energy to chew! Laurie has figured out how to make a delicious, high, calorie Boost-shake; Connie makes fabulous pasta salads, dear neighbors bring wonderful dinners—and Karen tries. So far, she’s hanging in there with a weight loss of only 6 or 7 pounds, although this does fluctuate. PRAY ON! This week is crucial.
Love and Best Wishes for a Special Saturday posted on: 8/4/2001
Today is Tom and Karen’s 17th Wedding Anniversary! Our congratulations and prayers for many, many more such celebrations wing their way to Amelia today.
Friday’s Counts and Treatment report posted on: 8/4/2001
Again on Friday, Karen experienced a smooth treatment with the rigors lasting a very short time. It takes hours of sleeping away the Demerol afterward, but to preserve her blood counts as much as possible, Karen thinks this is worth it. Her white count Friday was 1.4, with neutrophils at .2 and lymphocytes at .6. Her hemoglobin count was in the normal range (!) at 12.5 so she’s riding the coat-tails of those 3 pints of blood from Wednesday. Her platelets dropped to 6 even with Wednesday’s transfusion, so she received platelets at the hospital after treatment finally returning home at 10:00pm. Karen has been experiencing strong sternum and back bone pain, probably from the neupogen shots she’s been taking for so long. An x-ray and EKG were fine, ruling out other complications. This pain had eased a little by Friday night. Karen and Tom will see Dr. Mannion on Monday when her next treatment is scheduled.
A Late Thursday report….and “Light the Night” news posted on: 8/2/2001
Wednesday’s Cam-Path treatment was one of the smoothest yet for Karen. She and Tom and the nurses are always experimenting with the dosage and timing of the Demerol to ease the rigors she endures, and a new method worked well. The easier the rigors, the better for her blood counts–so this is big!–and hopefully can be repeated on Friday at the 11:00 treatment. Karen went straight to Christ Hospital from treatment to receive a 6-pack of platelets and 3 pints of blood. Again this was a slow process, and she didn’t get home until 3:15am. Today she is feeling good, more energetic in some ways from the good blood supply, but tired from lack of sleep! One of these days the girl will catch a break!! ****** THANK YOU for the 65 pints of blood donated in her name yesterday! See the homepage for more Blood Drive stats and dates for Blood Drive 2: The Sequel. Consider becoming a platelet donor. Where would Karen be without this crucial transfusion? Get information at the Drive or from Hoxworth Blood Center. ******* Last year’s “Light the Night” walk-a-thon has been transformed to “Light Up Cincinnati.” It will take place the evening of September 20, originating from Sawyer Point. (much less hilly than Eden Park’s route!) A parade of white and red glowing balloons will lead the walk: white lights for those living and surviving cancer (think KAREN) and red lights for those we honor and remember. At a designated time, downtown office buildings will blaze with lights, with some windows glowing red in memory of loved ones whose lives burn on as beacons of courage. Mark this date and join in the walk for a cure. Call Traci for your registration and pledge collection packet. ****** We’ll get Friday’s counts to you as quickly as possible.
Wednesday’s Counts posted on: 8/1/2001
Weakness and fatigue chased that perky feeling away Tuesday night, so Karen and Tom were not surprised to find that her hemoglobin has dipped to 6.2 today. Karen is headed to the hospital for blood and platelets again after treatment. Today’s platelet count is back to 2, and the white count is staying low also at 1.6, with neutrophils dropping back to the nether regions at .3. This is evidence that the Cam-Path is hard at work—killing cancer cells, fortunately, and good cells, too, unfortunately. What a trade-off. We pray and press on! Tom and Katie, Christy, Tommy and Kelly will be hanging out at the Blood Drive late afternoon and early evening, so if you’d like to buy some sweet baked goods, donate blood and join the National Bone Marrow Registry, become a Sunshine Band member, and say hi to some Carnses personally, head on out to St. B’s in Amelia. THANK YOU, TRACI, for your gifts of time and energy organizing this event in Karen’s name. Thank you, Sunshine Kids, for the Bake Sale and ALL who volunteer to help and ALL who give blood. Thank you, Hoxworth Blood Center, for coming to Amelia. Love in action is wondrous to behold!!
Tuesday Tidbits posted on: 7/31/2001
Karen is feeling downright perky (well, kind of) today—I think she’s anticipating all that blood that will be donated tomorrow. Don’t forget your appointment time at St. Bernadette Gym in Amelia. In case you cannot read Master Organizer Traci’s phone number on this homepage, it is 513-943-9703. There MIGHT be room for more donors! In addition to the Blood Drive, the “KC and the Sunshine Band” kids will be sponsoring a Bake Sale with all proceeds going to the Lymphoma Society. AND…you can join the Sunshine Band yourself–a truly elite group!!! Grandad finished his second radiation treatment and, in his words, is “doing great–2 down and 23 to go!” We will send prayers and positive thoughts your way, Mr. C!
Monday’s treatment posted on: 7/30/2001
Cam-Path was a little harder than usual on Karen today; we can only hope that this means it’s working harder on the lymphoma. The rigors lasted longer, requiring more Demerol than usual to quiet them. It is paramount to keep the rigors, and the accompanying fever, contained to the least amount of time, thus preserving Karen’s platelets, neutrophils, and hemoglobin. It is early evening now and Karen is sleeping, determined to regain her strength. Her platelet count is 7, and her hemoglobin is 9.7. Treatment continues Wednesday at 11:00. Last Wednesday, low counts sent her to the hospital for that lonnngg night of transfusions. Hopefully, that won’t happen this week. Thank you for reading and carrying the Carnses in your hearts! They are amazed at the number of log-ins being counted on this site. REMEMBER: Blood Drive this Wednesday, August 1. Over 90 people have made appointments to give blood! THANK YOU! Call Traci (info on homepage of this site) to see if there is room if you have not signed up yet. Information about the “Light the Night” walk-a-thon will be available at the Blood Drive and you will have the chance to join the champion team. See you there!
Everybody, breathe…. posted on: 7/30/2001
…a sigh of relief! Karen’s white count today stayed down at 2.9, and the best news is that the neutrophil number is now 1—and that’s a whole number, not a decimal!! She’s on her way to the office for treatment now after seeing the doctor at the hospital. More detail about how she’s feeling and the other counts later.
Friday’s counts…and how’s Grandad? posted on: 7/27/2001
Karen is still receiving treatment as I write this, and hanging in there as always. Midway through treatment, she still experiences rigors and shakes; unfortunately this eats up her counts along with the Cam-Path. Her counts today show the residual effects of the transfusions from Wednesday with a platelet count of 6 and a hemoglobin count of 10. The all-important white cell count is STILL dropping, showing up today at 1.5, with the neutrophil number down just one-tenth of a point to .4. The lymphocyte count showed at 1, which, in Karen’s words, means “the lymphoma has not broken through the Cam-Path.” Pray that this is still true on Monday after the 2 day weekend break. There is a return of the weakness and tiredness today and so a quiet weekend is on the agenda. Many of you are aware from the Healing Mass that Tom’s Dad is being treated for cancer also, and you have asked for an update on him. He is his usual ebullient, energetic, positive self! He begins a series of radiation treatments soon, and with his permission, we’ll post updates on how that’s going. Have a wonderful weekend, and when you get to church, you know what to do….!
Prayer of the Faithful reprise posted on: 7/26/2001
If you could not attend the Healing Mass on June 11, or if the program is not at hand anymore, it might help to re-focus our prayer by recalling the Prayer of the Faithful that was written and read by the Carns children at the Mass. +For Mommy, that this healing mass will help get rid of her cancer, we pray to the Lord. (Kelly, age 8) +For Dad, who heals us with his courage, strength and love, we pray to the Lord. (Tommy, age 9) +That my brother and sisters and I continue to be understanding and helpful to Mom, we pray to the Lord. (Christy, age 11) +For Mom and Dad’s families, especially their parents, who shower us with their special love, we pray to the Lord. (Katie, age 13) +In thanksgiving for the healing touch of friends who write, who phone, cook, pray and travel to be with us; who have become family, we pray to the Lord. (Katie) +For Mom’s doctor, Dr. Mannion, who heals through his knowledge, compassion, and heartfelt care, we pray to the Lord. (Christy) +For Mom’s nurses, who gently and lovingly take care of her, we pray to the Lord. (Tommy) +That God will take care of all others who are journeying with cancer, especially Grandad, Mr. and Mrs. Miller, and Eddie and Julie Driscoll, we pray to the Lord. (Kelly) Lord, hear our prayer. Amen.
Blood Counts for comparison posted on: 7/26/2001
Some website readers have had questions regarding blood count numbers. For comparative purposes, here’s some VERY basic info that might help us understand just how fragile Karen is right now. In a typical “healthy” person, blood counts can fall in the following ranges: a good hemoglobin count is 12-18 (10-11 is slightly anemic); platelets are measured in thousands and a healthy count is anywhere from 150 to 400 (understand this really means 150,000-400,000); white count is more complicated. The white count is comprised of 3 components: monocytes, lymphocytes, and neutrophils. The largest component should be neutrophils, as this is the basis of the immune system. A normal white count ranges from 3.6-10, with a good chunk being these soldier neutrophils. Now we look at Karen’s numbers from Wednesday and see this: hemoglobin at 7 so she received 2 units of blood that night; platelets at a whopping 2 so she received an 8-pack of platelets that night, and white count at 5.2, with netrophils only at .5. This gives some perspective. Because of the volume of fluids she received from combining treatment and these transfusions in a short period, the pace was slow and she finished transfusions at Christ Hospital at 4:30 in the morning and walked in her front door at 5:18 am. Talk about a long day! But she feels a little perkier and ready to press on with treatment at noon Friday. Hope this info helps; feel free to email email@example.com if you have more questions. We’ll post Friday’s counts as quickly as possible. Thanks for reading and for praying.
Wednesday’s counts are somewhat better! posted on: 7/25/2001
Karen gave me the OK to admit that it’s been a very tough few days. On Monday, her white count jumped to 17, with nothing present except lymphocyte cells. Dr. Mannion is away on vacation, which is a bit disquieting in itself, but on Monday, the doctor covering Karen’s case raised the question of continuing treatment, or not, since the Cam-Path did not appear to be working anymore. There are so many risks in this treatment, and being so new, there is not a large body of data to guide these decisions—so a white count jump is enough to call it off. HOWEVER, today’s white count is down to 5.2, with lymphocytes only showing at 3.5. Neutrophils made a poor showing at .5, but at least they showed up. THIS IS SIGNIFICANT and the computer print-out was so damp with tears of relief, it’s hardly legible now. Cam-Path is merciless though when it comes to being non-selective about killing cells, and Karen’s platelets dropped from 11 to 2, and hemoglobin dropped from 9 to 7.6. As a result, she will go from treatment straight to the hospital for 2 units of blood and a 6-pack of platelets. It will be a 10-hour treatment day for her, and this is not unusual. She is still weak, and frustrated by this as you can imagine, but the transfusions should help. The nurse who drew blood today knew that the white count HAD to come down, and after a five minute wait which seemed like 5 years, she returned and handed the counts to Karen saying, “An answer to prayer.” Then the tears came. The white counts MUST stay down, particularly after the 2-day weekend break, so we know what we MUST do. Pray for strength, for healing, and let’s not be shy about asking for miracles. Treatment is scheduled again for Friday.
In regard to the “Litany of Thanks…” posted on: 7/24/2001
…there are so many MORE of you to acknowledge, please continue to read the homepage for new entries. Despite their best efforts to keep lists, some gifts of time and treasures arrived during periods of hospitalization or preoccupation, and were NEVER overlooked, just not written down. As Karen and Tom have time at home to reflect and enjoy the presence of the presents, they let me know what to add! Please accept apologies if you were inadvertently left off the initial litany. Keep watching! For some reason I can’t fathom, the website does a random sort with this list, so the entries are in no particular order, and the heading may appear in places other than the top! Bear with us. Karen is feeling a bit stronger today, and eating pretty well. Cam-Path is scheduled for Wednesday afternoon. Thanks for reading, and please keep praying.
Monday’s treatment posted on: 7/23/2001
Karen was able to receive Cam-Path today at Christ Hospital. The neutropenic fevers seem to have subsided, leaving her very weak, but able to resume treatment. Perhaps because a few doses were missed in this interim (it is unclear though), Karen’s white count was disproportionately elevated creating a cause for concern. Hopefully completing a full cycle of Cam-Path this week will knock this white count down where it needs to be. Please note the BLOOD DRIVE information listed under NEWS at the top of this site’s homepage and call for an appointment and/or necessary details. Please continue to keep Karen in your prayers.
A restful weekend ahead posted on: 7/20/2001
After receiving the full dose of Cam-Path in the office today, Karen is home resting. The treatment wasn’t “too bad” with the rigors eased by Demerol and its side effects eased by Phenergan. Nurses also reassured Karen that the extreme weakness she feels is a normal after-effect of neutropenic fevers, and should pass in a few days. Platelets are still very low, other counts are OK. Cam-Path should be back on the M-W-F cycle now barring any complications. Knowing how anxious we all are to walk this journey with her, and understanding how much we love her and would like to bear some of this for her if we could, Kare is unbelievably gracious and patient divulging the details of her health and treatment. We thank her and promise continued prayers for wisdom for doctors and healing for her.
A Message of Gratitude–and a spelling error! posted on: 7/19/2001
Karen and Tom express their appreciation to an extraordinary group of educators from St. Thomas More School who gathered at the hospital with them on Tuesday evening. Ms. Fischer, Mrs. Brennan, Mrs. Eveler, Mrs. Stricker and Mr. Lyon gave their time and energy to discuss ways that the educational community can also be a support family for the “Carns Kids.” Tom and Karen are so very grateful for the resulting peace of mind, and the confidence they feel having their children with this school staff. CORRECTION: Soup Master Lori spells her name LAURIE! Sorry!
Home, sweet home! posted on: 7/19/2001
Big reunion on Hunters Run in Amelia today! Karen arrived home at about 11:30 this morning to big hugs from the girls and an even bigger one from Tommy when he returned home from computer class. She’s “weak as a kitten” in her disgusted words, but that’s expected after her week of fever and bed rest. It’s equally expected that the neighbors will see her walking laps before long. Blood counts are still low, but not falling, and her temp has been staying at 98 for the last 36 hours. Karen is scheduled for Cam-Path at the office tomorrow (Friday)and we hope the M-W-F cycle is back. Tom can ease up on the crumb cake to Karen’s relief, because Lori is bringing chicken soup and roasted veggies to have on hand, and we all know food tastes better at home. Pray for a return of appetite and no return of fever! More tomorrow.
Karen’s Favorite Prayer posted on: 7/17/2001
When I visited Karen Sunday, she showed me a prayer card an XU friend had given her. St. Peregrine is the patron of those living with cancer, and the pamphlet contains some of his wisdom as well as a prayer for his intercession on her behalf. Karen prays the Healing Prayer (below) with her every breath, and I thought perhaps we might like to share in this Spirit, and even breathe it for her when she’s weary. I reprint excerpts here, and the prayer (changed to third person in Karen’s name.) THE LAWS FOR MANIFESTING THROUGH PRAYER: + have pure intention…be true to yourself. + visualize your intention…imagine your desire to be true. + have faith…put your trust in God. + be disciplined…make time for daily prayer. + have patience…God always answers. + surrender…let God take control. + show your gratitude…give thanks daily. PRAYER FOR HEALING Dear St. Peregrine, Through your faith and love of God, you were miraculously cured of your cancer. Please ask God to vanish Karen’s fear, provide her with the will to fight this disease, and the strength to keep positive and focus on her blessings. O St. Peregrine, we believe that God is the “Divine Physician.” Please ask God to heal Karen. Amen.
Thanks for your patience! posted on: 7/17/2001
Karen has been hospitalized since her return from Omaha due to a chronic, low grade fever and very low blood counts. Cam-Path treatments were discontinued to allow her some rest and her blood counts some time to bounce back. And her blood bounced! Counts are slowly climbing and so Cam-Path treatments resume today, but the exact cycle for subsequent treatments will be based on whether the occurrences of fever abate, as will the length of her hospitalization. Katie, Christy, Tommy and Kelly deluged Mom and Dad with stories and souvenirs and sandy (very clean sand!) hugs and kisses upon their return from their beach adventure. Karen said they would have to make hospital beds bigger to accomodate family hugs. She has lost a tiny bit of weight (probably because Mark Wichard has not brought her any milkshakes) but not a bit of the brilliant light that shimmers around her. Tom’s “bald-headed beauty” is now “peach fuzz pretty!”
Friday’s Update posted on: 7/13/2001
Due to two Cam-Path treatments back-to-back this week, Karen’s immune system was wiped out. She started running a low-grade fever so as a precautionary measure, she was admitted to the hospital Thursday morning. Karen will receive IV antibiotics and Neupogen shots to boost her white count and immune system. Dr. Mannion opted to skip the Cam-Path treatment today which will also allow her counts to bounce back. As soon as her fever is gone and her white count increases she will go home – hopefully by Sunday when her beach bums arrive home. Due to her lack of an immune system and the high risk of infection, visitors are very limited. Karen is feeling O.K. and took a 5-lap walk today around the wing! We’ll keep you posted. Thanks for checking.
Wednesday’s Update posted on: 7/12/2001
Included in today’s update is a revision of Monday’s entry (July 9th) which has been deleted because inaccurate information was given. After speaking to Karen upon her return, I realized this. ALL THE GOOD NEWS STANDS – IT EVEN GETS BETTER! To summarize… After Karen and Tom met with Dr. Pavletic and her situation was reviewed, he told them he is hopeful. He has seen Cam-Path work on cancers that have been resistant to chemotherapy and he has seen Cam-Path cleanse the marrow completely. Dr. P’s plan is for Karen to receive a total of 8 weeks of Cam-Path (she is in her second full week) then undergo another bone marrow biopsy. If these results are good (meaning the cancer has been reduced) she will go to transplant. More good news… Omaha has found 17 potential matches for Karen through the Bone Marrow Registry. These potential donors are all a 5 out of 6 match OR a 6 out of 6 match! THIS IS A CORRECTION I AM THRILLED TO MAKE. Of course, a 6 out of 6 match is preferable but a 5 out of 6 match is very promising. These 17 people will be contacted for availability and asked to undergo further blood typing (a couple more vials of blood drawn from their arms) to determine the best possible match for Karen. PLEASE PLAN TO JOIN THE REGISTRY EVEN THOUGH THESE POTENTIAL MATCHES HAVE BEEN FOUND. These donors could be ruled out for a variety of reasons. SO PLEASE JOIN THE REGISTRY SOON!!! (Just a reminder — if you go to Hoxworth and donate one whole pint of blood and tell them you want your blood typed for marrow donation and your name added to the Bone Marrow Registry, there is currently no fee. You must tell them at the time of blood donation because an extra vial of blood is needed in addition to the whole pint. This can be done at no charge only during this period of a blood shortage. The fee will be reinstated after this.) Please understand that when your name goes on the Registry, you are making your marrow available to anyone who may need it. Karen’s mother was also typed Monday morning here at Christ Hospital. In closing, Karen received her treatment in Omaha as well as platelets before the flight home. They arrived home this morning in time for her treatment in Dr. Mannion’s office and Karen is now snoozing in her own bed. The trip was exhausting both physically and mentally for Karen and Tom with two long and busy clinic days, but filled with hope and good news. Thanks for continuing to check on Karen and Tom and thank God for this encouraging news.
Sunday’s Update posted on: 7/8/2001
Karen and Tom arrived in Omaha last night and Karen had no problems on the flight. They were picked up by a representative from the clinic and taken to the facility where they will be staying. This facility which is part of the clinic includes exercise rooms, treatment centers and offices, with the upper floors being suites for patients and families. They walked to the cathedral to Mass and then just took it easy today. Monday is a big day so we hope they get lots of rest. As for the Carns Kids, we have reports of beautiful weather at the beach. All is well there. Thanks for checking on all of the Carns.
Friday’s Update posted on: 7/7/2001
Karen received her treatment at the hospital again today because her doctors are attending a seminar. Since Campath is so new, a doctor must be present when it is administered. All went as expected and Karen and Tom were both resting at home by dinnertime after a long day (everything takes longer at a hospital). Karen will receive a blood transfusion as well as platelets on Saturday and then off to Omaha!
Thursday’s Update posted on: 7/5/2001
Karen did not receive any treatment today but she and Tom did receive an exciting phone call from the Director of Medical Services at the University of Nebraska! Karen and Tom will visit Omaha for some preliminary heart and lung tests, a transplant class and an interview with the doctor who will be on the case. After a consultation with Karen, Dr. Pavletic will decide if a bone marrow transplant is the direction to take. Dr. Mannion gave Karen the go-ahead to fly so she and Tom will leave this week-end. THEY KNOW OUR PRAYERS GO WITH THEM. Karen will receive her Campath treatment in Omaha on Monday and be back home in time for Wednesday’s treatment. The Carns Children are off to the beach so may all our travelers have safe journeys and bring home only good news and smiles (and seashells for Aunt Fuzzy)! Catie O’Brien recently delivered the album of letters and notes written to Karen following the Healing Mass. It was beautifully and thoughtfully compiled and the messages you all have sent are so inspiring. We will continue to add letters and notes to the album as we receive them, so if you haven’t sent one yet please do so. Karen has received short notes from many and letters from others and each one means a great deal to her. She was overwelmed and had that same smile and glow she had the night of the Mass. THANK YOU.
Wednesday’s Update posted on: 7/4/2001
Karen received the full dosage of Campath and rode out the rigors without any Demerol. She was very tired as a result, but much more alert and felt like herself afterward. Happy Fourth of July!
Monday’s Update posted on: 7/2/2001
Karen’s first day of this new cycle (MWF) went very well. She received the full 30 mg of Campath which she will from now on, but only half the Demerol. This lesser amount (a kid’s size dose!) did the trick and Karen is thrilled. She felt the Demerol was throwing her for a loop, not to mention she felt “loopy” from it! After 3 consecutive days of Demerol, Karen felt rather washed out over the week-end but today she said she no longer feels drugged and was even awake way past her usual bedtime. Dr. Mannion was pleased and impressed with Karen’s counts today as well. (She did make a quick trip to the hospital Sunday because she needed platelets). Many people have asked when and how Dr. Mannion will determine if the Campath is working. He explained today that he will wait until he sees a pattern of low numbers with her counts. This may be 4 or 6 weeks away or perhaps even longer. Karen will then undergo another bone marrow biopsy. Thanks for checking on Karen and the next update will probably be Wednesday. Karen has to receive her treatment at the hospital Wednesday since the office is closed so it may be this late in the evening once again. Keep up the good work Kare and enjoy the fireworks tomorrow night!
Friday’s Update posted on: 6/29/2001
SHE DID IT! Karen received the full 30 mg of Campath today. The reaction (rigors, chills, nausea) was a little rougher due to the full dose, but once again Karen is enjoying her evening at home with her angels (all five of them). Karen has quickly come to the conclusion that she does not care for Demerol which must be administered at the onset of rigors. More good news… Karen’s blood counts were taken today and her white count dropped from 35 on Wednesday to a very normal 6.4 (As Karen explained in Monday’s update, an elevated white count indicates the cancer is active). It looks like those rigors just might be worth it! Dr. Mannion, the nurses and even the pharmaceutical representative were amazed that Karen was able to build up to the 30 mg in just three days, and very pleased with her counts. But we all know that Karen is amazing! Karen took a walk this evening and is looking forward to a week-end of just being busy with kidstuff. Monday includes an appointment with Dr. Mannion and the first day of the Monday, Wednesday, Friday schedule in which she will receive Campath. Happy week-end to all!
Thursday’s Update DAY 2 COMPLETE! posted on: 6/28/2001
Karen’s second day on Campath was successful and Dr. Mannion was pleased with her progress and the way her body is accepting the new drug. Ninety-eight percent of people receiving Campath experience “rigors” (shakes and/or chills) to some extent. This is an expected response as Karen’s body adjusts to the drug. There are four stages of “rigors” and both days Karen experienced a stage two reaction. This is considered a minor response (Go Karen!) Campath attacks only the B-cells which are the malignant cells so “rigors” though unpleasant, indicates that Campath is doing its job! As Karen left the office she was told they would attempt to give her the full dose of 30 mg tomorrow (Friday). She corrected them by informing them that she won’t attempt 30 mg, but that she will in fact receive 30 mg tomorrow! Just in case you’re wondering, Karen continues to be her usual determined self. Have a great evening (Karen is) and tomorrow I’ll report how the full 30 mg goes. Thanks for checking in on her.
Wednesday’s update 6/27/2001 posted on: 6/27/2001
The new plan has begun! Karen started her Cam-Path treatment today receiving her first dose of 3 mg. Tomorrow it will increase to 10 mg and by Friday Karen will receive the full dose of 30 mg. All went as expected and she was home in time to eat dinner with her family. Hopefully she’s getting a good night’s sleep so she can gear up for tommorrow and go in with her usual determination. We realize you are interested in this new treatment so look for additional information in tomorrow’s update. Thanks for keeping Karen, Tom, Katie, Christy, Tommy and Kelly in your prayers.
Monday’s update by Karen posted on: 6/25/2001
Things got a little complicated today so I thought I’d write this update myself! Unfortunately, my platelets dropped back to 8 and my ANC (good white blood cells) remained low at 1.9. However, the total white blood cell count jumped to 25 which means the lymphocytes (malignant cells) are on the move again. This tells us that once again the cancerous cells are recovering quicker than my healthy cells which proves that this current chemo regime isn’t working either. BUT… there is another plan! We’re going to stop chemo altogether and try a new drug called Campath. Campath is a monoclonal antibody that was just approved by the FDA in May. It was designed for CLL patients who were in the more progressive stages but has been used for lymphoma patients too. Dr. Rai in New York, Dr. Armitage in Omaha and Dr. Mannion all mentioned it some time ago and just last week Dr. Armitage recommended that we try Campath next if need be. Even though we were hoping the chemo would work, we’re lucky to have this new option. Three months ago this drug wouldn’t have even been available. Tom and I feel pretty good about this new plan. We’re still learning but what we know so far is: – Campath is administered over a longer period of time than most chemo drugs. (and long periods of time sound good to me!) -It is given through an IV and can be done in the office rather than the hospital! No more weeks away from my angels!! -The greatest occurrence of side effects is during administration of the drug so we’ll start slowly in small amounts and then build until we reach the desired dosage. This was the same for Rituxin, the other antibody I received for CLL, and I had very few reactions. Hopefully, things will go that smoothly again. -I will receive the drug daily for 5 to 7 days and then, when the desired dosage is reached, continue to receive it on Monday’s, Wednesday’s and Friday’s. -It will wipe out my immune system and platelets too which by now has just become a way of life. -The goal is still to have the Campath knock out the cancer enough so that we can get that transplant. It’s always disappointing when treatments don’t work but it’s clear we need to do something different. What I know is that what is done is done. Being disappointed or frustrated isn’t going to change the results. What it will do is hamper my ability to prepare for Campath and enjoy the beautiful day we have today. I choose to look forward. Campath might just be the missing key we’ve been searching for so, once again, we’ll hope, pray and direct all our positive energy to this end. As we settle into this new routine, these updates should get shorter!! One day there is going to be good news and then we’ll tell you where the party is! Thanks for all your e-mails. I’m glad you all thought the healing mass was as beautiful as we did. Fr. Dan keeps saying “prayer and patience”. Let’s all keep praying and I’ll be as patient as I need to be for that healing to occur. Love, Karen
Sunday Homecoming posted on: 6/24/2001
They’re back! A great time was had by all at the Pirates game, and out and about in Pittsburgh, but the big news of the weekend is that Karen dropped “something heavy” (?) on her shin and DID NOT BRUISE! Maybe those platelets are on the rise. Latest blood counts coming tomorrow.
Friday’s Blood Count posted on: 6/22/2001
Karen’s counts are slowly climbing: hemoglobin edging up slightly just above 12; platelets making a move from 9 yesterday to 11 today; white count up from 9.7 to 15. This little white cell jump worried Karen, but the nurse explained that the neuprogen shots, which Karen just discontinued yesterday, are stil nudging this count upward. The platelet count cleared Karen for a road trip, so if you can catch the Pirates game on cable Saturday night, listen for the Carns family cheering at PNC Park. She and Tom are looking forward to a great family weekend in Pittsburgh. We’ll post new blood counts on Monday and hopefully a “chemo resume” date. Happy Weekend, everybody!
Thursday’s Doctor Report posted on: 6/21/2001
On Wednesday of this week, Karen’s platelets were a great 12! (Up from 1 on Monday.) But alas, this may have been the residual effect of the transfusion from Monday, because today the platelet count dropped slightly to 9. If the platelets continue to fall when checked tomorrow (Friday) Karen will receive donor platelets to boost her up until her own start rebounding—and we know they will. Her white cell count was 9.6 on Wednesday and only 9.7 on Thursday which is good, too. The white count is a combination of 3 things, the Absolute Neutrophil Count (ANC) being the most important component to watch–the “soldiers” which fight disease. This ANC is low, but the white count itself is being stimulated by the daily injections of neuprogen Karen gives herself. This is why that number is rising when the others are not—yet. Hemoglobin is looking good at 12. Dr. Mannion, in touch with Omaha, told Karen that her sisters, Nancy and Connie, who matched 4/6 antigens in bone marrow would NOT be acceptable donors for her. THEY ARE NOW CHECKING THE NATIONAL REGISTRY FOR A MATCH. If you are not on the Registry and would like to be typed as a potential donor, call your local Blood Center and be typed ASAP! Most of the time this can be done free of charge with the donation of a unit of whole blood. WATCH THIS WEBSITE FOR INFO ABOUT SEVERAL BLOOD DRIVES (and accompanied bone marrow typing) THAT ARE BEING ORGANIZED NOW. The sooner donors are added to the National Registry, the better a chance for a match! If no match is found, the possibility of umbilical blood for stem cells may still be an option. A doctor from Omaha also offered yet another chemo regime as a back-up if the current one is not effective. This is great news because it shows that the doctors in Omaha are as actively engaged in Karen’s case as Dr. Mannion is. Her blood pressure was high earlier this week (very unusual for calm and cool Karen) but was normal (low) today and when asked why, Dr. Mannion laughed and said he had no clue what the reason was. He and Tom just called it “the Karen factor.” She is indeed unique!!! Blood counts will be checked every few days, and Dr. Mannion has agreed that when those darn platelets reach 75, he’ll start chemo again. Karen has been given the go ahead for an escape to Pittsburgh this weekend to see Tom’s parents. We wish them safe travels and great fun. Everybody reading this: make time SOON to get typed for the National Bone Marrow Registry!
Monday’s Blood Counts posted on: 6/18/2001
Today, Karen’s blood counts are still low but manageable. The white cell count is up to 2.7, a slow and steady good increase, but the platelet count dropped from 10 to 1. Her hemoglobin count is still hovering at 8.4, on the low side. Dr. Mannion decided to give Karen platelets and a unit of whole blood to raise both counts. With her usual aplomb, she and Tom stopped for lunch at Uno’s before heading for the 3-hour stay at Christ Hospital for the transfusion. Karen is still feeling well, but on the tired side and she is bruising easily. We need to concentrate on getting the platelet count up so the next chemotherapy cycle can begin. Pray on!
http://www.marrow.org posted on: 6/15/2001
Check this site for heroic stories, updates, facts, and frequently asked questions about the National Marrow Donor Program.
How to be typed as a Bone Marrow Donor posted on: 6/15/2001
The following is information received from Hoxworth Blood Center in Cincinnati, OH. Organizing a large donor drive requires a minimum of three to six months of planning. IN LIEU OF A FORMAL DRIVE, interested individuals can be marrow typed, without charge, by choosing either of the following methods: 1) Free marrow typing in exchange for a donated unit of blood can be done at any of Hoxworth’s seven Neighborhood Donor Centers. Both the unit of blood AND the extra sample (one needle stick for the unit of blood and less than 3 tablespoons extra!) for marrow typing must be given during the same visit. It takes about one hour to complete required consent forms and donate blood. APPOINTMENTS REQUIRED. CALL: 513-451-0910. 2) Donating platelets in exchange for free typing. CALL number above for appointments. DONORS MUST TELL Hoxworth staff that they want to be MARROW TYPED. Potential marrow donors must be between the ages of 18 and 60, in good health, and not excessively overweight. Certain medical conditions, including asthma, back or disc problems, diabetes, or heart disease may prevent a person from being a marrow donor. Plans are underway for a BLOOD DRIVE in Karen’s name at St. Bernadette School in Amelia in early July. IF YOU GIVE BLOOD to be typed PRIOR TO THIS DRIVE, please be sure to designate your unit of blood for Karen Carns. Details about the Blood Drive TBA as they are finalized. BE AWARE that once you are typed as a potential donor, you are making a commitment to anyone in need of a bone marrow transplant whom you may match. Our heightened awareness as a result of Karen’s illness has made it possible for many more of us to be available to others who are ill. Karen approves!
Thursday’s Doctor Report posted on: 6/14/2001
Karen’s blood counts today are pretty much as expected: hemoglobin is at 8.6 and holding its own; white cell count is “nonexistent” in Karen’s words at .7 (but, in a way, this is a good thing–a skyrocketing white count indicates the cancer is very active, and obviously it is not); platelets are still low at 10, but bounce back quickly once they start regenerating. Chemo will begin again when the platelet count is 90-100. Dr. Mannion told Karen and Tom that all options are still open. The clinic at the University of Nebraska, Omaha, is still weighing the choice of a partial bone marrow match from a sibling, versus a better match from an unrelated donor. A sibling donor provides a situation in which there is more confidence that other aspects of the marrow will match, beyond the 6 antigens typed in the matching screening. Dr. Mannion and Omaha are also consulting in regard to the use of umbilical cord blood and stem cells. New research in this area was reported in the news this morning. THOSE OF YOU INTERESTED IN BEING TYPED AS POTENTIAL BONE MARROW DONORS: later today I will post information we are receiving from Hoxworth Blood Center about this procedure and the inherent conditions.
June 12, 2001 posted on: 6/12/2001
Karen is tired, but elated, on this day following the Healing Mass. She and Tom are overwhelmed by the outpouring of love and support and prayer–and the number of people who came to Bellarmine with so many varied connections to their family. As she said last night, “Keep praying, this fight is not over!” Karen’s blood counts are low as is to be expected this week following chemotherapy. When her counts allow it, she will return to Christ Hospital in Cincinnati for another 6 day chemo cycle to set the stage for a possible bone marrow transplant. As many of you became aware last night, none of her sisters are a perfect match to be the donor. Many of you also asked about being typed as a potential donor and expressed your willingness to do this immediately. When exact information about that process becomes available, we will post it here. Thank you for such generosity of spirit–and blood! I am Karen’s sister, Susan, and I will be posting updates to this site every few days. If you have questions, or would like more specific information, please feel free to email me: firstname.lastname@example.org I will also be happy to forward emails to Karen and Tom. Appreciate those sunsets and take that bike ride!
Karen’s Letter from the Healing Mass program posted on: 6/12/2001
It’s true that a cancer diagnosis changes your life. Things slow down dramatically and suddenly you find the time to watch the kids play in the yard, take that bike ride, or appreciate the beauty of the sunset. In the past year, our perspectives and priorities have changed but the one consistent thread through it all has been love. Tom’s love has gotten me through many doctor’s reports and so much more and then I have my four angels to greet me at the door each time I come home. We turn to family and friends again and again to celebrate the good news and cushion the blows of the setbacks. The outpouring of love and support that we receive has taught my family that one valuable lesson—to be loved and to love is all that really matters. It’s the love I have for my life that strengthens my resolve to stay positive, hopeful, and determined. I leave this mass tonight a much richer woman. Just like the “Light the Night” walk, you’ve filled me with love, encouragement and support which will sustain me in the days to come. While I live with faith and hope, it’s the love that inspires me the most. Thanks for giving your love so graciously to me. Sincerely, Karen