Abigail's Story
Minneapolis, MN
Abigail's Story by: Todd and Julie Buckner Abigail Patricia Buckner was born on September 16, 2006. She was our third child and second girl. We were so very excited to expand our family and she fit right in from the start. Abby was a healthy child. She had a few small issues with constant constipation. Also she was hyperflexible and needed physical therapy to help her walk, but she was walking and running by 16 months just like all of the other kids. Besides those minor things, she was your typical 2 ½ year old. On Friday February 20th, 2009, Abigail did not seem to be feeling well and she vomited, just once. She had no fever and ran around and played just fine after. Saturday she vomited again and she seemed a little weaker, but still drank, ate okay, and played. Sunday she became very ill. She became sleepier and sleepier as the day went on and could not keep anything in her stomach. We thought she had a nasty stomach virus! We gave her pedialyte in small doses and let her rest. I called our pediatrician Monday morning first thing and went in that morning. At this point she was sleeping all of the time and could not wake up and was extremely pale. I knew something was very wrong, but the thought that she was dying never once crossed my mind. Our pediatrician sent us to Children’s hospital in Minneapolis and told us to go there right away – he wanted testing done to see what was going on. I got to the ER and checked in and was told to sit and wait. There was another mother there with her son who had a broken leg and got upset when she thought we were getting in before her son! I was called up to the registration desk after about 10 minutes and a nurse walked by. She stopped and told the person taking all of my info to stop immediately, that she wanted Abby back in triage right now! I was so relieved. They got her back there and she would wake up every once in a while and her eyes would search for me and then she would find me and then would fall asleep again. They started an IV with fluids and I knew after 30 minutes and she was not perking up that dehydration was not the issue. Every time they tried to stick her with a needle she would bleed more than she should have. They asked me if she had a problem with clotting and I said No. Todd was in Florida for a work meeting. A different nurse came in and asked me if there was a way I could call my husband and have him come home right away. I asked Why. They then told me that Abigail was a very sick girl and had a very serious blood disease, but that was all they knew at the time. They admitted her to the intensive care unit and things kind of went downhill from there. They had no idea what was causing her problems, but could tell that she was either not producing blood or destroying it once it was produced. But - she also had no clotting capabilities either. They had to get the blood under control. They also found out that her liver functions were pretty much nonexistent and did not know why either. So, Abigail was put in the Pediatric Intensive Care Unit. |
www.abigailbucknerfoundation.org
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It really was a blur that first night. They were putting iv's in her, but there was no circulation so they could not get veins. They had to do a central line and tried in both sides of her groin with no luck, but wherever they poked her she bled profusely since she had no clotting ability. They finally got one in her corroded artery. They sedated her and also gave her a breathing tube. They were just trying to get her stable to then try to figure out what was wrong. Todd finally arrived about 12:30 a.m.. We were told by the doctor that she was gravely worried about her and basically told us that she was more sure than not she would not survive. It was a rough night, but she made it through and they did an ultrasound the next morning. They were able to see that her liver was very, very abnormal and huge. Her stomach had blown up like a hard ball and it was because of her liver enlarging. In the mean time they were giving her blood and platelets via IV. They were giving her a lot of blood, but her labs were not improving. They could not figure out where the blood was going. They figured the liver for some reason was taking it all. They also discovered a blood clot in one of her major veins and figured out it was blocking the blood out of her liver and spleen. She was getting blood in, but not out. This was a problem as well. The trouble with all of this was there are ways to figure out what was wrong, but she was just not stable enough for any procedures to be done on her at all or else we risked her bleeding to death. They wanted to do a bone marrow biopsy even though they did not think it was leukemia, they know the marrow could show many other things. They did that Tuesday morning. We took everything hour by hour. Her body was producing too much potassium which can cause cardiac arrest so they had to try to fix that. Her body was producing too much ammonia which can cause stroke so they had to fix that - they were just putting out fires. They had to figure out a way to hook her up to dialysis to get her kidney's to function. We were told this was a very risky procedure that could take 2 hours. We said goodbye to her and left her room.
It only took about 30 minutes and it went well. They were able to get the dialysis going. In the mean time (or sometime!) we got some good news. Through her bone marrow, they figured out exactly what was wrong and it was treatable. The problem was just getting her stable with the blood. They were trying to dissolve the blood clot with giving her enough of the blood thinner, but enough of the blood clot agent too so it would dissolve it, but not allow her to bleed. She kept getting too much and oozing blood out of every poke in her. It was awful. The results of the biopsy - she had a very rare and dangerous immune disorder called HLH (hemophagocytic lymphohistiocytosis), where your histiocytes (blood cells) go crazy and can attack your blood, skin, liver, central nervous system, etc. She was to begin an eight week treatment protocol with steroids, immunosuppressants and chemotherapy. Once she was done with that she would have to have a bone marrow transplant to be cured. We were devasted, but hopeful. The chemo seemed to be working, but on Wednesday the 25th after just one day of knowing what she had her heart stopped beating. They tried for 25 minutes to get her back, but her little body was too tired to fight anymore.
We miss her every minute of every day.
We came to know Liam’s Lighthouse Foundation through our research into HLH. There is limited resources available so we all sort of ‘know’ each other. We had the opportunity to become a part of LLF’s awareness campaign in February 2011. Todd flew out to NY to be a part of the campaign and got to meet with Michelle – the founder. Todd felt a connection immediately and could see and feel the passion Michelle has for educating and helping to find a cure. Michelle and Todd talked about her vision of having honorary histio heros of LLF around the US that would be in a specific child’s honor or memory. We were very interested in a partnership with Michelle and LLF and so Abigail became an honorary histio hero of Liams Lighthouse Foundation! We are so excited for this amazing opportunity to spread the word and raise much needed funds for research in Abigail’s memory. The Abigail Buckner Foundation was born and are thrilled to partner with Liam's Lighthouse Foundation to fund groundbreaking research!
It only took about 30 minutes and it went well. They were able to get the dialysis going. In the mean time (or sometime!) we got some good news. Through her bone marrow, they figured out exactly what was wrong and it was treatable. The problem was just getting her stable with the blood. They were trying to dissolve the blood clot with giving her enough of the blood thinner, but enough of the blood clot agent too so it would dissolve it, but not allow her to bleed. She kept getting too much and oozing blood out of every poke in her. It was awful. The results of the biopsy - she had a very rare and dangerous immune disorder called HLH (hemophagocytic lymphohistiocytosis), where your histiocytes (blood cells) go crazy and can attack your blood, skin, liver, central nervous system, etc. She was to begin an eight week treatment protocol with steroids, immunosuppressants and chemotherapy. Once she was done with that she would have to have a bone marrow transplant to be cured. We were devasted, but hopeful. The chemo seemed to be working, but on Wednesday the 25th after just one day of knowing what she had her heart stopped beating. They tried for 25 minutes to get her back, but her little body was too tired to fight anymore.
We miss her every minute of every day.
We came to know Liam’s Lighthouse Foundation through our research into HLH. There is limited resources available so we all sort of ‘know’ each other. We had the opportunity to become a part of LLF’s awareness campaign in February 2011. Todd flew out to NY to be a part of the campaign and got to meet with Michelle – the founder. Todd felt a connection immediately and could see and feel the passion Michelle has for educating and helping to find a cure. Michelle and Todd talked about her vision of having honorary histio heros of LLF around the US that would be in a specific child’s honor or memory. We were very interested in a partnership with Michelle and LLF and so Abigail became an honorary histio hero of Liams Lighthouse Foundation! We are so excited for this amazing opportunity to spread the word and raise much needed funds for research in Abigail’s memory. The Abigail Buckner Foundation was born and are thrilled to partner with Liam's Lighthouse Foundation to fund groundbreaking research!
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http://www.caringbridge.org/visit/abigailbuckner [email protected] www.abigailbucknerfoundation.org If you would like to make a donation in Abigail's honor and memory, please do so by donating here. Abigail's family will be notified of your generous donation and they thank you for your support! |
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