My life has felt like a roller coaster these past few days. My son Julian is doing well. He's busy with sports, video games and friends and appears to spend very little time thinking of being sick. Me on the other hand, spend most of my time thinking of it, holding back tears and pushing away the vivid memories of his worst moments.
I am trying really hard to find a new way of living my life with the acceptance that my son is healthy and happy right now, today...and I can't control what happens tomorrow. Trusting God has always been a really difficult thing for me. I have no doubt in my heart and mind that it was solely through the grace of God that my son lived through his crisis.
I can't help but feel that this is some type of dirty little trick to keep me on my knees and in submission to God. In life, most of us take back control of our lives from God when things are going well. When things are not going well, we gladly give it up to God to fix and make everything OK again. For so many years I have lived keeping God at arms length, loving him, believing in him but just not being able to give him control. Now, my son is in a place that I have no control to change. Talk about submission. I'm either going to grow in my faith and have peace or I am going to die prematurely from the stress of it.
I think that I have said this one too many time and have probably wrote it in my blog already....I would rather get hit by a truck a thousand times than lose my son or see him get that sick again. It feels really unfair that it happened to him and not me. He's the straight A student, gifted athlete with an infectious smile. I've made enough mistakes to last the rest of my life and a few other lives too.
Julian is now done with his protocol treatment for HLH and is in remission. So, for the rest of his life we have to just be aware of any warning signs that the disease won't strike him again. This week he developed fluid in his knees and minor swelling. He complained of knee pain but it didn't slow him down with basketball.
Monday he returns to the hospital for more tests because of that swelling. We are trying to always be one step ahead. HLH causes multi-system inflammation in the body. Another thought was that Julian could possibly have Juvenile Rheumatoid Arthritis. JRA is linked to HLH. Julian had swelling in his joints with a rash at the onset of HLH. However, becasuse he had no problems creep up when the steroids were removed, the thought was that it was more probable that it wasn't JRA. Now, we scratch our heads at what is happening and I wonder what this means for him.
He is terrified of having a crippling disease and he doesn't understand what a bone marrow transplant means. More things to pray about.
Wednesday, June 30, 2010
Tuesday, June 22, 2010
Don't Ask If You Don't Want to Know
Today was the last day that my son had to take his medications for HLH. Tomorrow is our routine trip to the hospital. He is feeling great and looking awesome. He's back to his football training and basketball games. This is all a thing of the past for him, like it would be for most 12 year old boys.
However, for me it will never be. My husband and I met with the Bone Marrow Team last week. The only true cure for HLH is a bone marrow transplant. It has been decided that if Julian were to relapse, he would need a bone marrow transplant (BMT). I became aware at this meeting that because Julian has a genetic link to HLH, the chances of relapse are a very real possibilty for him. This news knocked me down for a few days. Today, I decided to pick myself up and start figuring out a way to hold a bone marrow drive. Julian doesn't have a perfect match, although he has a close match. It would be ideal that we found a perfect match but even if we never did, it would be great if my efforts saved someone else's life.
I'm learning everyday how a deadly illness can change the dynamics of a family. The other children become pushed the side and the sick kid becomes "special" and will probably always get away with more things. You find yourself losing your temper with the healthy ones and trying to make every moment special with the one that you have an uncertain future with. I hope that I can develop the wisdom to be a good mom to all of them without giving them baggage that they will carry into their adult lives.
It's also affected me as a nurse. I have greater compassion for the sick and no tolerance for the ones that aren't sick and are abusing the system. Can you tell that I am an Emergency Room nurse. I find myself feeling a lot of anger at the patients that come in for pregnancy tests, ingrown toe nails, abdomen pain that's been there for a year. I'm managing to treat them all the same but it's so hard. I'm glad that we are all a work in progress through out life.
I have learned that most mothers would rather die a thousand times over than to watch their children die for any reason. That's the hardest part, is feeling so helpless and such a loss of control.
I find myself angry and sad a lot. I'm wasting precious time.
However, for me it will never be. My husband and I met with the Bone Marrow Team last week. The only true cure for HLH is a bone marrow transplant. It has been decided that if Julian were to relapse, he would need a bone marrow transplant (BMT). I became aware at this meeting that because Julian has a genetic link to HLH, the chances of relapse are a very real possibilty for him. This news knocked me down for a few days. Today, I decided to pick myself up and start figuring out a way to hold a bone marrow drive. Julian doesn't have a perfect match, although he has a close match. It would be ideal that we found a perfect match but even if we never did, it would be great if my efforts saved someone else's life.
I'm learning everyday how a deadly illness can change the dynamics of a family. The other children become pushed the side and the sick kid becomes "special" and will probably always get away with more things. You find yourself losing your temper with the healthy ones and trying to make every moment special with the one that you have an uncertain future with. I hope that I can develop the wisdom to be a good mom to all of them without giving them baggage that they will carry into their adult lives.
It's also affected me as a nurse. I have greater compassion for the sick and no tolerance for the ones that aren't sick and are abusing the system. Can you tell that I am an Emergency Room nurse. I find myself feeling a lot of anger at the patients that come in for pregnancy tests, ingrown toe nails, abdomen pain that's been there for a year. I'm managing to treat them all the same but it's so hard. I'm glad that we are all a work in progress through out life.
I have learned that most mothers would rather die a thousand times over than to watch their children die for any reason. That's the hardest part, is feeling so helpless and such a loss of control.
I find myself angry and sad a lot. I'm wasting precious time.
Saturday, April 24, 2010
Hemophagocytic Lymphohistiocytosis (HLH)
HLH is an immune disorder than can be classified in two types of forms, the familial form or the reactive also known as acquired form. Familial HLH is also known as FHLH while the other is mostly just known as HLH. Familial HLH is usually the result of a genetic issue while HLH is a reaction that your immune system had to a virus or other type of source such as Juvenile Arthritis. You can learn more about both on
the following website www.histio.org.
My 11 year old son was diagnosed with the reactive form in December of 2009. He is in treatment for it which consists of steroids, immunosuppressive therapy and can involve chemotherapy. The only actual cure is a bone marrow transplant. Julian is in medication induced remission and the hope is that when he is done with his treatment that he will remain in remission.
A very simplistic description of this disorder is that the person gets a virus or an illness and the body develops killer cells to destroy the virus. Once the virus is gone, the body no longer needs these killer cells and gets rid of them. If the body can't get rid of them, they eat away at the body. That is the case with HLH, these killer cells take over and attack organs and bone marrow. Since the bone marrow is attacked, it affects cell production. This is the reason that Julian's platelet count dropped.
When Julian was in a coma, I often thought to myself "I just want to hear him say mom again", "I just want see his smile". So many thoughts like that ran through my head. I can't put into words how awesome it is that Julian is playing basketball and his recent report card is all A's and B's. I will never take for granted hearing him say "mom" again and I find that the sounds of his voice or his kisses on my cheek are like heaven on earth.
Today, Julian hung out with his friends, played video games and is now watching TV while laying on my bed. Life is how it's supposed to be.
the following website www.histio.org.
My 11 year old son was diagnosed with the reactive form in December of 2009. He is in treatment for it which consists of steroids, immunosuppressive therapy and can involve chemotherapy. The only actual cure is a bone marrow transplant. Julian is in medication induced remission and the hope is that when he is done with his treatment that he will remain in remission.
A very simplistic description of this disorder is that the person gets a virus or an illness and the body develops killer cells to destroy the virus. Once the virus is gone, the body no longer needs these killer cells and gets rid of them. If the body can't get rid of them, they eat away at the body. That is the case with HLH, these killer cells take over and attack organs and bone marrow. Since the bone marrow is attacked, it affects cell production. This is the reason that Julian's platelet count dropped.
When Julian was in a coma, I often thought to myself "I just want to hear him say mom again", "I just want see his smile". So many thoughts like that ran through my head. I can't put into words how awesome it is that Julian is playing basketball and his recent report card is all A's and B's. I will never take for granted hearing him say "mom" again and I find that the sounds of his voice or his kisses on my cheek are like heaven on earth.
Today, Julian hung out with his friends, played video games and is now watching TV while laying on my bed. Life is how it's supposed to be.
Thursday, April 22, 2010
Introduction
I can only describe this period of my life as a nightmare. There was some stress in my life. I was 34 weeks pregnant and had just been placed on bed rest due to hypertension. I work as an "on call" nurse but have always done full time hours. With my position there is no pay if you do not work. We had a high loan from our 3 IVF attempts and were not expecting for me to not work for a few weeks, so the unexpected time off was a little bit stressful. If only would I have known that it was just the beginning.
My 11 year old son Julian whom is quite active developed fatigue, loss of appetite and a fever. Julian played on three basketball teams and was a quarterback for his football team. This was a straight A over achiever that never stopped. I kept asking him if his throat hurt or if his "stomach" hurt. I was watching and waiting for another "flu" type of symptom to develop but it didnt. After a few days of high fevers he developed jaundice (yellowing of his skin and the white part of his eyes). Now I was really worried!
We took him to our local emergency room and I began to run through my head all of the possible reasons a normal and healthy 11 year old boy would have a problem with his liver. I knew as a nurse that the jaundice meant that there was something going on with his liver. I held back tears and tried to remain calm and reassuring to Julian. They started an IV and drew blood. All of the nurses that he came into contact with (the triage nurse and his assigned nurse) had that look that I got when I knew that it wasn't going to be good for my patient. I felt un-nerved by that look and wondered if I had ever done that to my patients without offering any reassurance. Their silence and lack of reassurance felt as sharp as a knife.
When his labwork came back it confirmed that his liver was failing him. The other thing about his lab results that I found really upsetting was that his platelet count was low. Platelts are the part of your blood that allow clotting and keep you from bleeding. So, immediately the tears flooded me and I couldn't even stop them for Julian's sake. It was well after midnight and he was in and out of sleep. I walked out of the room and went into a bathroom. I didn't want to sob infront of anyone and I really didn't want Julian to hear me.
The emergency room doctor never discussed the lab results with me, she just handed them to me and said that she was going to admit him to the hospital. She vaguely discussed that it could be a virus and that he would need to be watched. She returned shortly after to tell me that my son's pediatrician had decided that he should be transfered to Children's National Medical Center. I felt relief with this and then disapointed at myself for not demanding that from the beginning. We were told that the ambulance to transfer him would arrive by 6am. I layed with him in the stretcher and watched him sleep as we waited. It arrived at 5am.
We were transfered to the emergency room of the new hospital so that they could re-evaluate him and decide where to go from there. We were there until about 2 or 3pm before being admitted into a room. While we were in the emergency room his fever spiked again and he became incontinent of stool. This was really upsetting to him and the crying and anger began for him. I saw the fear in his eyes and I felt so much guilt that I couldn't hide my own at a time when I should be doing nothing but reassuring him. I comforted him as much as I could. Every now and then I would walk into the hall and cry silently.
When we got to his room, I surveyed my surrounding and began to plan out how I would sleep at night. I worried about the scattered contractions that I was having and wondered if my blood pressure was sky high. I began making the phone calls to family, close friends, our pastor. A stream of doctors came through and the consensus seemed to be that he had liver failure related to a virus. They seemed to feel that he would need several weeks to get better but that he would. However, after a few hours his breathing didn't seem quite right to me. I called and asked for the doctors to evaluate my concern. They reassured me that his lungs were clear and he was stable.
Later in the evening I began to move things around in his room so that I could organize our belongings. Suddenly I thought that my water broke. I quietly went into the bathroom fully expecting to confirm that my wather broke but hoping that maybe I urinated on myself. I was shocked to see blood, a lot of blood. I started to sob again. After regaining my composure I walked out of the bathroom and told Julian that I would have to go to another hospital to possibly have the baby.
Julian began to cry and say that he couldn't breathe. I tried to calm him as I felt more blood streaming down my legs. I whispered to my husband that I was bleeding and that I could have a placenta abruption going on. This is when the placenta tears causing significant vaginal bleeding. In most cases the baby only survives if he can be taken our via emergency c-section in less than an hour.
I was relieve that family had arrived to be with Julian and I wouldn't be leaving him alone. I was rushed to the hospital next door. They evaluated me and felt that I my placenta was intact, the bleeding had stopped, so they discharged me. My husband insisted that I go home and actually sleep a few hours (I had been awake for over 24 hours and had no bed rest). I reluctantly went home as he returned to Julian's side. It was around 5 in the morning when he called me and told me to return to the hospital. I sobbed all the way there. I arrived to find out that while I slept, Julian crashed and was placed on life support. He was on medications to sustain his blood pressure and a machine to breathe for him. I began to feel like the life was draining out of me and I was sure that I couldn't handle life without Julian. I sobbed because I was knew that I would have a baby really soon and couldn't handle taking care of a newborn and I didn't want to leave Julian's side.
I held vigil at Julian's side as family and friends waited in the family room. After everyone's insistance, I went to see my OB doctor. He immediately admitted me to deliver the baby. My blood pressure was sky high and he suspected that I was misdiagnosed and did infact have a slow tearing placenta. As he induced me, I couldn't find any happiness inside and felt like it was utterly unfair to bring a baby into the world at this point in time. I wondered if my family was holding Julian's hand the entire time as I would have. Carson was born the evening of December 30th, two days after the nightmare began. I held him for an hour before he developed respiratory distress and was taken to NICU and placed on a maching to help him breathe. He was 5 weeks premature but strong and would be OK after a little bit of time in the NICU. Less than 24 hours after his birth, I left the hospital to be by Julian's side.
Things seemed to be getting worse for Julian. His platelet count dropped to 3,000 (normal is approx 150,00 to 400,000), he had needed multiple blood transfusions and was bleeding in his lungs and into his eyes and had swelling in his brain. His entire body was so swollen and with the bright yellow coloring, my Julian no longer looked like my Julian. I prayed and cried and begged God to save my son. I sat in a chair watching as he deteriorated and the doctors and nurses diligently worked to save his life without ever giving up hope. As an emergency room nurse I had been a part of many codes but I never once put myself in anyone of my patients' families shoes. I wondered if I would ever be the same again.
Then came the unofficial diagnosis: HLH. A rheumatologist brought on only 5 months prior to CNMC (Children's National Medical Center) from Cincinnati's Children's Hospital made the call to treat Julian for HLH even if the tests wouldn't be back for a few weeks to confirm it. Julian began getting better. Today, he is back at school and back to sports with no deficits. He is my miracle. I continue to struggle with the trauma of what happened. I decided to start this blog to put the story of HLH out there and to write about my experiences in the hope that healing can begin and others can be informed about this illness. HLH is short for Hemophagocytic Lymphohistiocytosis. It is an immunilogical disorder that most don't survive.
My 11 year old son Julian whom is quite active developed fatigue, loss of appetite and a fever. Julian played on three basketball teams and was a quarterback for his football team. This was a straight A over achiever that never stopped. I kept asking him if his throat hurt or if his "stomach" hurt. I was watching and waiting for another "flu" type of symptom to develop but it didnt. After a few days of high fevers he developed jaundice (yellowing of his skin and the white part of his eyes). Now I was really worried!
We took him to our local emergency room and I began to run through my head all of the possible reasons a normal and healthy 11 year old boy would have a problem with his liver. I knew as a nurse that the jaundice meant that there was something going on with his liver. I held back tears and tried to remain calm and reassuring to Julian. They started an IV and drew blood. All of the nurses that he came into contact with (the triage nurse and his assigned nurse) had that look that I got when I knew that it wasn't going to be good for my patient. I felt un-nerved by that look and wondered if I had ever done that to my patients without offering any reassurance. Their silence and lack of reassurance felt as sharp as a knife.
When his labwork came back it confirmed that his liver was failing him. The other thing about his lab results that I found really upsetting was that his platelet count was low. Platelts are the part of your blood that allow clotting and keep you from bleeding. So, immediately the tears flooded me and I couldn't even stop them for Julian's sake. It was well after midnight and he was in and out of sleep. I walked out of the room and went into a bathroom. I didn't want to sob infront of anyone and I really didn't want Julian to hear me.
The emergency room doctor never discussed the lab results with me, she just handed them to me and said that she was going to admit him to the hospital. She vaguely discussed that it could be a virus and that he would need to be watched. She returned shortly after to tell me that my son's pediatrician had decided that he should be transfered to Children's National Medical Center. I felt relief with this and then disapointed at myself for not demanding that from the beginning. We were told that the ambulance to transfer him would arrive by 6am. I layed with him in the stretcher and watched him sleep as we waited. It arrived at 5am.
We were transfered to the emergency room of the new hospital so that they could re-evaluate him and decide where to go from there. We were there until about 2 or 3pm before being admitted into a room. While we were in the emergency room his fever spiked again and he became incontinent of stool. This was really upsetting to him and the crying and anger began for him. I saw the fear in his eyes and I felt so much guilt that I couldn't hide my own at a time when I should be doing nothing but reassuring him. I comforted him as much as I could. Every now and then I would walk into the hall and cry silently.
When we got to his room, I surveyed my surrounding and began to plan out how I would sleep at night. I worried about the scattered contractions that I was having and wondered if my blood pressure was sky high. I began making the phone calls to family, close friends, our pastor. A stream of doctors came through and the consensus seemed to be that he had liver failure related to a virus. They seemed to feel that he would need several weeks to get better but that he would. However, after a few hours his breathing didn't seem quite right to me. I called and asked for the doctors to evaluate my concern. They reassured me that his lungs were clear and he was stable.
Later in the evening I began to move things around in his room so that I could organize our belongings. Suddenly I thought that my water broke. I quietly went into the bathroom fully expecting to confirm that my wather broke but hoping that maybe I urinated on myself. I was shocked to see blood, a lot of blood. I started to sob again. After regaining my composure I walked out of the bathroom and told Julian that I would have to go to another hospital to possibly have the baby.
Julian began to cry and say that he couldn't breathe. I tried to calm him as I felt more blood streaming down my legs. I whispered to my husband that I was bleeding and that I could have a placenta abruption going on. This is when the placenta tears causing significant vaginal bleeding. In most cases the baby only survives if he can be taken our via emergency c-section in less than an hour.
I was relieve that family had arrived to be with Julian and I wouldn't be leaving him alone. I was rushed to the hospital next door. They evaluated me and felt that I my placenta was intact, the bleeding had stopped, so they discharged me. My husband insisted that I go home and actually sleep a few hours (I had been awake for over 24 hours and had no bed rest). I reluctantly went home as he returned to Julian's side. It was around 5 in the morning when he called me and told me to return to the hospital. I sobbed all the way there. I arrived to find out that while I slept, Julian crashed and was placed on life support. He was on medications to sustain his blood pressure and a machine to breathe for him. I began to feel like the life was draining out of me and I was sure that I couldn't handle life without Julian. I sobbed because I was knew that I would have a baby really soon and couldn't handle taking care of a newborn and I didn't want to leave Julian's side.
I held vigil at Julian's side as family and friends waited in the family room. After everyone's insistance, I went to see my OB doctor. He immediately admitted me to deliver the baby. My blood pressure was sky high and he suspected that I was misdiagnosed and did infact have a slow tearing placenta. As he induced me, I couldn't find any happiness inside and felt like it was utterly unfair to bring a baby into the world at this point in time. I wondered if my family was holding Julian's hand the entire time as I would have. Carson was born the evening of December 30th, two days after the nightmare began. I held him for an hour before he developed respiratory distress and was taken to NICU and placed on a maching to help him breathe. He was 5 weeks premature but strong and would be OK after a little bit of time in the NICU. Less than 24 hours after his birth, I left the hospital to be by Julian's side.
Things seemed to be getting worse for Julian. His platelet count dropped to 3,000 (normal is approx 150,00 to 400,000), he had needed multiple blood transfusions and was bleeding in his lungs and into his eyes and had swelling in his brain. His entire body was so swollen and with the bright yellow coloring, my Julian no longer looked like my Julian. I prayed and cried and begged God to save my son. I sat in a chair watching as he deteriorated and the doctors and nurses diligently worked to save his life without ever giving up hope. As an emergency room nurse I had been a part of many codes but I never once put myself in anyone of my patients' families shoes. I wondered if I would ever be the same again.
Then came the unofficial diagnosis: HLH. A rheumatologist brought on only 5 months prior to CNMC (Children's National Medical Center) from Cincinnati's Children's Hospital made the call to treat Julian for HLH even if the tests wouldn't be back for a few weeks to confirm it. Julian began getting better. Today, he is back at school and back to sports with no deficits. He is my miracle. I continue to struggle with the trauma of what happened. I decided to start this blog to put the story of HLH out there and to write about my experiences in the hope that healing can begin and others can be informed about this illness. HLH is short for Hemophagocytic Lymphohistiocytosis. It is an immunilogical disorder that most don't survive.
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