We just got a letter from Dawn's College Roomate thanking us for the donation to her Team in Training luekemia marathon event at Disney in honor of Dawn. Esther completed the race in Dawn's honor and raised some money for fighting luekemia. Time passes as we find ourselves still struggling every time we come across a new picture or thing of Dawn's. Some things get easier with time and other things just don't. Each of us deals with grief in our own way. Our sons, Steve and Will have their own way and both have significant times where it just is too much. Becky and Matthew wrestle and struggle. We know that we have been helped greatly by a very loving God. And we know that we will need much more help. I took a month leave of absence in July and may have to take some additional time in the near future. Matters are always made worse by additional losses. We were so blessed to have Dawn in our lives for those 28 years. Mike came into Dawn's life and added a real spice that made her very happy. Mike is a very special guy and we are so thankful to still have contact with him. What do we do with grief? What do we let grief do with us? For one thing one must be careful not to let grief define who you are. One must wrestle with celebrating the best and also releasing the painful aspects. In time one must go on but that certainly does not mean forgetting or living as if this terrible tragedy never happened. Continue the fight by giving blood and blood products, register for the bone marrow registry, give financially to the cause, check out Team in Training athletes who run for the cause and pray and love. Never give up, never lose hope. One day luekemia will be defeated. One day. Pastor Steve, Dawn's Dad.
Thursday, January 27, 2011
Thursday, December 3, 2009
Until funding runs out, you can join the bone marrow donor registry for FREE. It normally costs $52.00.
When a cancer patient needs a life saving transplant, their doctor searches the National Bone Marrow Registry for a donor. The donor must have very similar DNA typing to be a sucessful match, which can be difficult, sometimes impossible to find. Dawn was unable to find a suitable marrow donor in the registry. That's why we need YOU to join!
Becoming a donor is very easy to do and you may be the ONLY match for someone needing a life saving transplant.
1. Goto http://www.marrow.org/ and click "JOIN".
2. After registering online (FOR FREE!), you'll receive a cheek swab kit (below) in the mail as well as some other literature.
3. There are easy directions. (click on the picture to read)
4. Using one of the 4 swabs, after swallowing, rub the inside of your cheek for 10 seconds.
5. Using the included bar code stickers, wrap the end of the swab to identify you during testing.
6. Place the swab in the foam holder then repeat with the three other swabs. You should use each swab in a different area of your inner cheek. (upper right, upper left, lower right, lower left)
7. You'll place a "bio hazard" sticker on the folder to secure it closed. Then place it in the pre-paid envelope.
8. Mail it and you're done! Congrats!
Friday, January 9, 2009
More than anything, Dawn would want people to continue to register to become bone marrow donors and blood donors. You can find information at http://www.marrow.org/ and http://www.givelife.org/. Please continue to spread the word.
Posted by Mike at 1:51 PM
Thursday, January 8, 2009
Dawn lost the battle to leukemia today at 1:15pm. She passed peacefully, without pain and surrounded by friends and family. Jack Johnson was playing in the room. This morning Dawn was more aware and responding to commands. I read her the comments on the blog from the last few days. Thanks to everyone for all their outpouring of support and encouragement. It's been overwhelming. Those of you still in the fight, keep fighting; Dawn is smiling down upon you.
I know many of you have only seen Dawn through this site. I want everyone to remember Dawn not only for her battle with leukemia but also who she was before leukemia. When she was up on the transplant floor I had a bunch of pictures printed from memories that she and I shared. We put these pictures up as a collage in her room to help her remember what she was fighting for. You can click on the photo below to see some of these pictures.
Posted by Mike at 1:28 PM
Wednesday, January 7, 2009
There have been no changes in the last 24 hours. Her blasts have come down slightly. Still no word on the liver biopsy. Her heart rate did slow a bit last night but came back up on its own. If her heart does stop we will not try to restart it. We will however do everything we can to prevent that from happening and will be treating her to the fullest until we either see no improvement with the blasts or until she shows any signs of suffering. The chances of her blasts being defeated by her good cells is extremely slim, it almost never happens even with healthier patents. But we’ve come this far and Dawn has fought through so much to get here, I think we owe it to her to give her this one last chance.
Many of you are probably wondering how this could happen so quickly. Just a few weeks ago we had a clean FISH and 100% donor cells. Dawn had a very powerful and aggressive mutation that wasn’t responding to any of the oral chemo inhibitor drugs. She went through two rounds of chemo before her preparatory chemo and TBI and each time it came back stronger and seemingly more resistant. Typically transplants are more successful if you’re in more of a remission or chronic state at the beginning. Dawn was far from that state. This is just an example of how powerful leukemia can be and how desperately we need donors and a cure.
The last 24 hours have seen a tremendous amount of visitors to this site. There were 3,269 visits by 1,923 people. Already today there have been 1,175 visits by 643 people. In the last 36 hours there have been over 1300 first time visitors to this site. 83 Comments on the last posting so far. Thanks for all of the kind words, I wish Dawn was awake to read them all and see how many lives she’s touched. I think from time to time Dawn didn't feel like she was doing something meaningful with her life. She’s done well in many different jobs from being a flight attendant responsible for hundreds of people a day, and coordinating TV productions for national news and sports networks seen by millions of people. At the end of the day, I think she was always looking for something more meaningful and fulfilling, something that would allow to her to really help people and leave her mark on this world. If Dawn has touched your life, if you’ve joined the registry, given blood, recruited a friend, please write about it as a comment in this post, even if you already have previously. I’m hoping that in the next few days, Dawn will be more awake and I can read her all of these comments. I’m hoping that if she passes, she can rest peacefully knowing that her life had a lot of meaning to a lot of different people. That maybe others will be saved because of her. I know many of you out there are saddened by all of this. Let's turn that saddness into something good. The best way to feel good is to help another person. I hope each of you can join the donor registry and recruit a friend. Also, please give blood. Everyday there are leukemia patients either looking for donors or getting blood. YOU could be the only match for someone. You can find information at www.marrow.org and www.givelife.org.
Posted by Mike at 12:34 PM
Tuesday, January 6, 2009
Still no word on the FISH. Her blast count is up to 39% which is very discouraging. She had a good night. She's off the amio drip and holding a steady heart rhythm and pressure. She's been opening her eyes this morning but not making eye contact and she doesn't respond to us at all nor has she moved. Her breathing seems to be doing pretty good. Her bilirubin is 29.3. White count is 36.1. She tested positive again for C. Diff which can cause the high white counts, but usually wouldn't cause the blast cells. We're painfully awaiting the results.
This is a very sad day for all of us. The FISH is positive for leukemia. Not only are the blast cells mutated but many of the other cells are as well. The only option right now is to stop her immunosuppresion drugs and see if her good cells will fight the bad cells. Otherwise the decision would be to stop life support.
Monday, January 5, 2009
Dawn's blasts went up again last night. They were as high as 23% this morning and today they're down to 10%. Dr. Stuart hasn't rounded yet so I haven't heard his take on this. They sent off the FISH this morning and hope to have a 24 hour turn around. If it turns out to be positive for leukemia, there really isn't any treatment that can be done in her current state. She's so fragile right now and on the edge of stability. There will be a discussion about whether to continue life support if the test results are positive.
They're preparing Dawn for a trip down to IR to get the liver biopsy and her hickman line removed and replaced, which could possibly be infected. She needs more blood and platelets. Her blood pressure is pretty low right now so they may start her on some pressors before making the trip. They don't want her to code during the trip, especially in an elevator. There was some discussion about whether to perform the tests today or wait until the results of the FISH. We've been pushing hard to get the tests done while we have a window of opportunity. Anything can change in the next 24-48 hours and maybe she'll need to get back on the oscillator vent and doing the procedures won't be an option. Plus the FISH could take more than 24 hours. I think we need to proceed as "normal" until we know what's going on with the blasts. Dawn only gets one shot at this and having a line with an infection in her body an additional 24-48 hours could make a big difference. We have a lot of battles to fight and we need to do what we can when we can. Her bilirubin is down today to 26. Hopefully we're seeing a trend downward.
Her breathing has been doing ok. Her lungs are still badly damaged so the blood gases aren't going to be excellent, but they're ok. It's hard to keep everything balanced. Her blood pH is high so they need her to hold on to more CO2, which helps lower blood acidity. To do that they lower her respiratory rate which in turn lowers the O2 levels. Dialysis also affects the blood acidity so they can make some changes there, but you also have to keep the fluid in the blood balanced. Too little or too much fluid can affect the heart which seems pretty sensitive lately. These kinds of adjustments to keep things stable and balanced are on going.
Dawn just got back from IR. They did the liver biopsy and they replaced the hickman with a PICC in her left arm. They're about to replace the line for dialysis which will be done at the bedside in her room. Her vitals have been stable, blood pressure holding well and her sinus rhythm (heart rhythm) has been normal. Dawn is still highly sedated, she did open her eyes a little bit today and seemed to look around the room. I'm not sure if she recognized any of us. Tomorrow morning we should get the results back from the FISH.
Posted by Mike at 10:31 AM
Sunday, January 4, 2009
Dawn had a very rough night. She had a few periods of bradycardia which means she had a very slow heart rate. It was down to 20 at one point. This morning she had some very irregular rhythms, a-fib, flutter. They started amiodarone and it seems to have helped, her rhythm is now stable. Dawn's Mom was here first thing in the morning and the hospital suggested that she call us at home and have us come in. Her blood gases are looking very good and her chest x-ray shows much better looking lungs today. They were going to move her to the standard ventilator today but since her heart was acting up they might hold off. We're pushing for them to do the vent change. Her heart issue may be caused by a fungal infection in one or more of her lines. When she coded the day after Christmas she also had a fungal infection. They added a medication and she's tested negative since but this type of infection is rare and hard to treat. Once they change her to the standard ventilator they can change her lines and do her liver biopsy, hopefully in one trip to interventional radiology. Our hope is they can change her vent today and give her 24 hours to ensure stability, then tomorrow get these procedures done. Getting the lines changed might help with the fungal issues and getting the liver biopsy might help with directing treatment.
Her blast cells are down to 4% today and her other blood counts are mostly the same as yesterday. Her WBC was up in the 40's last night but it's now down to 32.8, ANC: 24.9, Hemoglobin: 8.8. Her liver hasn't changed much, bilirubin 29.7. Some of her liver enzymes are still trending down, one is up slightly from yesterday.
Dawn is off the oscillatory ventilator and back on the standard ventilator with pressure control. She had another period of heart arrhythmia just before changing the vent. They gave her another bolus of amiodarone and it quickly normalized. Her pressure is a bit low but not low enough yet to give pressers. She seems to be doing well on the vent, they'll do a blood gas soon and we'll know for sure.
A team of nurses and respiratory therapists about to change vents
Saturday, January 3, 2009
Yesterday I reported that her liver enzymes were back in the normal range. Wrong information. They're trending down, but still elevated. The bilirubin is up to 30.1 (normal .2-1.3). What's more concerning is her white count and the presence of blast cells. Normally blast cells are only found in the bone marrow and they make up less than 5% of cells in the marrow. When they make their way into the peripheral blood it becomes a concern. Dawn had 1% blast cells yesterday and 9% this morning. Her white counts are WBC: 33.14 (normal 4.8-10.8), Neutrophils 25.518 (normal 2.2 - 7.6). Her hemoglobin is 7.7 and platelets are 13 (extremely low). I'm not sure what to make of the elevated white counts and blast cells. Normally I would look at this and say leukemia but the doctors don't seem to think so. She had a FISH test a few weeks ago and it showed no bcr-abl gene and it showed 100% donor cells. Dr. Stuart said it would be rare to have blast cells this soon with a test like that and he thinks the marrow is stressed. There must be some concern however because they're going to repeat the FISH test on Monday and have it rushed. We should know something on Tuesday or Wednesday. Her breathing seems to be the same.
Posted by Mike at 8:45 AM
Friday, January 2, 2009
Dawn has very elevated white cell counts which concerns some doctors but doesn't concern her transplant doctors. Dawns liver counts look better today. The bilirubin is down to 27 from 29 and the other enzymes that have been high are now back in a normal range. Her breathing continues to be ok. They took her off the nitric oxide new years day which is a very big step. They've tried lowering some of the settings on the ventilator and it's a very delicate balance. Even a minor change seems to have a big effect on her blood gases so they have to take it slow. Her lungs are still badly damaged but improving little by little. She's still heavily sedated so we have no interaction with her whatsoever. They monitor her brain activity to ensure that she's sedated. They also monitor how paralyzed she is by giving her small voltage on one of the nerves on her arm. They measure how much voltage it takes to make her fingers move. I think it's going to be the same story for at least the next few days. There was some talk about maybe getting her on the standard ventilator early next week but nobody is sure how long this healing will last so any projections right now are just guesses.
Posted by Mike at 3:43 PM
Wednesday, December 31, 2008
Here I sit watching the clock tick down to midnight while I reflect on what a year this has been. I remember this time last year when we were both "normal" people saying goodbye to 2007 and looking forward to what good times lay ahead in 2008. There were some good times, a lot of them actually, but what we consider "good times" changed considerably one day in March when Dawn got a phone call from her doctor. Even in the best of times there was always leukemia. A "dark passenger", to quote one of our favorite TV shows, always with us everywhere we go. The moment you can laugh and forget, it always seems to tap you on the shoulder and remind you it's there. Now we hope to leave that dark passenger behind, stuck in 2008, never to return again. It's now 2009. I counted down for Dawn and the nurses gave me some sparkling grape juice. There weren't fireworks or confetti, just the constant chug of the ventilator and the spinning of the dialysis machine. There wasn't a party or a toast or singing of "Auld Lang Syne" but there was something better - starting the year, free of leukemia.
Dawn is still holding on. Some things are improving, other's aren't. They've been coming down on the nitric oxide, she's down from 20 parts per million to just 1. Her blood gases are still looking pretty good, it seems her lungs are healing. The x-rays show much fuller lungs with less fluid. Her liver and kidneys are still a concern. Her bilirubin and other liver enzymes are still high. We need to get that liver biopsy done but we can't until she's off the oscillatory ventilator because it makes her entire body shake.
Goodnight everyone and happy new year!
Posted by Mike at 11:49 PM
Tuesday, December 30, 2008
No news = good news. Dawn's vitals are still stable. They have lowered the concentration of nitric oxide to 8 parts per million. She was at 20 parts per million. The nitric oxide was the last-resort thing they had to save Dawn's life saturday morning. It helps by opening up the little blood vessels in the lungs. Her liver bilirubin is still high but stable around 20. They don't plan on making any changes today. It's still all about rest and healing.
Unless something happens I probably won't post any additional updates today. Those of you who want to help with the battle with leukemia can donate blood and register to be a bone marrow donor. If you already have, thank you! Now recruit a friend!
Posted by Mike at 9:52 AM
Monday, December 29, 2008
How you can help:
1. Please give blood - banks are low
2. Register to become a bone marrow donor
Dawn had a good night. Right now in her situation a good day is a day where nothing gets worse and ideally things get better. It's going to take a lot of time for her body to heal but she's making little improvements. They've been slowly lowering some settings on the ventilator. The nurse reported her X-ray this morning looked better. Her blood pressure is a little high but she's also swelling up a little so it could be from extra fluid. She's on pretty high sedation and pain meds so we don't think it's related to that. She's still chemically paralyzed and can't communicate anything with us. It's likely she can hear things. Her eyes are covered with gauze because she can't blink and her eyes remain slightly open. This is to protect her eyes from any dust or debris which can scratch the eyes. They also have to moisturize them.
Her liver worries me. Her bilirubin has been stable, today it's 20.3 but her other liver enzymes are high. Her Alkaline Phosphatase is 152 (normal 25-100) and her Aspartate Aminotransferase is 156 (normal 8-34). They stopped the defibrotide a few days ago then restarted it yesterday for one dose, then stopped it again. We didn't realize it was restarted and not sure exactly why it was stopped again. I'll be asking the doctors when they round today.
Her blood counts are pretty good. Her WBC is 8.11 which is comfortably in the middle of the normal range. Her platelets have been low and she's been getting those but supplies are low so they are forced to be conservative with transfusions. It's essential we get blood donors to help restock our blood banks.
Today has been a pretty uneventful day. Pretty quiet here in the room except for the constant "chug chug chug" of her ventilator. Her blood gases are pretty good. They increased the dialysis to pull an additional 50ml of fluid off per hour. It was set to only remove the amount of fluid they give her. The defibrotide is still stopped as of now. They did start her back up on the tube feeds. They had to remove the NG tube and insert an OG tube because she had some sinus problems. Same concept except the tube goes down the mouth instead of up the nose. For now it's still rest and repair for Dawn. She'll be on this oscillation ventilator for at least the next 24 hours if not a few more days. During that time she'll remain chemically paralyzed and will require sedation so we have no interaction with her at all.
Sunday, December 28, 2008
Last night Dawn needed platelets and there was only one bag left in the blood bank. They gave it to Dawn but they had to call more in from other cities, which can be hard because they're running low too. I can't emphasize enough the need for blood donors. Please visit http://www.givelife.org/ and donate blood in your area.
And as always we need people to register to become bone marrow donors. Visit http://www.marrow.org/ for information.
Dawn is still stable. Her blood gases last night needed work but mostly in her blood chemistry, she's been oxygenating ok. Not much has changed, they're going to try doing some tweaks on the ventilator in hopes they can lower the settings. The doctors said this could be a process that can take months.
Dawn has tested positive for a fungal infection in her blood. The good news is that the doctors have been trying to stay one step ahead of things and started her on an anti-fungal a few days ago. Typically, they have to take samples and let them grow in the lab and see what develops so the positive lab result today was a result of a sample taken a few days ago. It's likely the antifungal is already fighting this and it may have resolved already. This may have been a contributing factor to our scare a few days ago. Every day a team from infectious disease visits and examines Dawn for any signs of infection. They also consult with Dr. Costa and Dr. Stuart (her transplant Dr.'s) with any recommendations on medications to add or take away. It's good to have many eyes watching over her. Dawn's care is very much a team effort by many doctors. I can't express enough how impressed and amazed I am at how knowledgeable and thorough they are, even her nurses. They also seem to always be on the cutting edge of new technology and treatments. She may be at a hospital in a small city in South Carolina but I have no doubt that she's recieving world class care by the hands of world class doctors and nurses.
She had a pretty good day today, nothing got worse and a few things are a little better. They went down slightly on some of the settings on the ventilator at 8pm because her blood gases are doing well. Her heart has also been irregular and today and tonight it has been more stable. There was an infection in her arterial line today so they had to remove it and relocate it to her foot. Things seem to be holding, if not getting better and that's what we really need right now.
Posted by Mike at 10:30 AM
Saturday, December 27, 2008
One of the big reasons Dawn started this blog was to help others going through what she is. In that spirit, I'm going to ask each of you to help her accomplish that goal. You can help by giving blood and joining the bone marrow registry. The blood bank supply runs critically low this time of year as the number of volunteer donors declines because of the holidays. Even Dawn's doctors have mentioned that they've held back on some transfusions because the supply of her blood type is low and they want it to be there if the need becomes critical. Please donate blood and help someone just like Dawn. Visit http://www.givelife.org/ to find donation locations near you. Also Information about joining the bone marrow donor registry is found at http://www.marrow.org/, please share this information with a friend.
I was sleeping in Dawn's room when the doctor woke me up at 4:30 this morning and said she was afraid Dawn was dying. They called her parents and brothers at home to come in. Late in the evening they switched her from a normal ventilator to a oscillatory ventilator. Instead of giving her long deep breaths like the other vent, this one gives her short breaths very quickly. Her vitals began to stabilize and blood gases were looking better for a while but then started to get worse, as low as 50% oxygen levels. Her liver enzymes also got much worse and her body temperature got down to 91 degrees. She's on a ventilator for the lungs, dialysis for the kidneys and she requires a multiple medicines to keep her blood pressure normal. As you can see there are multiple organs failing. At about 4:45 this morning they started giving her nitric oxide in her vent to help open up the blood vessels in the lungs. This seems to be helping as her most recent blood gases are much better. They said she has acute respiratory distress syndrome or ARDS.
The good news is that her body temperature has started to rise and her vitals are looking much better. Also ARDS can resolve itself if nothing else bad happens but she has a really long road ahead of her and she really can't get much worse than she is right now.
Dawn seems to be making some progress. Her recovery isn't going to be swift but each little step can be a mile in recovery and she has a long way to go. She's off the blood pressure medication and is holding good pressure. It's actually a little high right now but getting off the pressors is a big step. Her breathing is a little better, the blood gases are coming back ok and she's only getting 50% oxygen. That's still a bit high but she's been getting 100% oxygen all night which can become toxic.
I don't really have much to update which is probably a good thing. They just removed the crash cart from the room which is encouraging. Her blood gases continue to look good. She's made some pretty good progress in the last 12 hours, it certainly has been better than the previous 12 hours. Everyone is cautiously optimistic that she hit rock bottom last night and is now on a slow road to recovery. We used to measure her progress by days and weeks, right now it's minute by minute but today it seems each minute is better than the last. The overall plan is to continue to support her functions, protect her from infection and allow her body to rest and recover.
I forgot one thing, they stopped the defibrotide. It's unclear without a liver biopsy whether her liver issues are from VOD or something else. It's a study drug and there could be unknown side effects that are contributing to her ARDS. We all hope the VOD has resolved itself and the liver doctors have leaned that way from the beginning anyway. She remained on the defibrotide up until now because it's currently the only treatment available for VOD with any measure of success.