June 6, 1944, known to most as D-Day. The invasion of Normandy and the turning point of World War II. June 6, 2009, Julie and Alison were preparing to go to Sugarloaf Vineyard for a festival. Chuck was running errands and Turner and I were going to start watching WWII movies. Mrs. Miniver, a wonderful movie with Greer Garson and Walter Pidgeon, which is not exactly a typical WWII movie but one that still takes place in London during WWII, is what was on for the early afternoon.
What I love about Turner is that even though he loves battles from Ancient Greece, Sparta, Rome to WWII he also loves the history and human factors that are vital to all wars. War to Turner has a much more mature meaning to him than to most eleven year old boys. The plain destruction of people or towns or civilizations is not what turns him on. He understands politics, current situations and all else that goes into starting a war. Sometimes it is a very simple act that starts a war. But in almost all cases the cause is deeply rooted in society and politics of the time. So to ask any other 11 year old to watch Mrs. Miniver would probably be futile. Turner, however, remembered some of the movie from a few years before and was eager to watch even though there were no Panzers involved. For those of you who are unfamiliar with the movie it takes place in a small town outside of London, close enough to see the skyline and to hear the bombing. It is a perfectly idyllic town with a grand dame to oversee the township society. An old widowed matriarch who lives in the towns largest country castle. Mrs. Belham's 18 year old socially conscious granddaughter lives with her. Mrs. Miniver is married to a well respected architect in town and is the nicest person ever to every one. The two families, old Mrs. Belham and the Minivers become intertwined in life. The movie shows how war can bring communities and families together. It, also, illustrates how life's tragedies, even those brought on by war, show no prejudice towards anyone.
Turner had just made a brunch for us of cheesy scrambled eggs. We had just reached the part in the movie where Mr. Miniver had just returned after six days on his river boat rescuing British and French troops from Dunkirk. The British navy did not have enough vessels so they asked regular men with boats, many civilian river patrol, to cross the English Channel, stave off German bombardment, and fill their boats to capacity and return to England. No picnic in the park. After Mr. Miniver awoke from eight or so hours of sleeping all day he asked his wife what she had done while he was gone. She replied not much just capture a downed German pilot who held her captive for a short time with his gun in their kitchen. It was then that both Turner and I heard what sounded like Julie but muffled and very odd. It took Turner and me no time to realize something was not right. Turner flue into the hall and Julie's room and I was not far behind. What we found was our Julie sideways on the bed kicking the laptop off onto the floor with her violent shaking. I leaned over her to ask what was happening only then fully realizing her eyes were up in her head, she was drooling and shaking more violently than before. I knew she was having a seizure but all I could summon from my brain was a picture of Patty Duke thrusting a spoon down someones mouth to keep thier tongue from being swallowed. I could not thankfully pry her teeth apart. They were clinched so tightly I thought that it was causing her to turn blue around her mouth and then to my horror her entire face was going blue. Somewhere seconds before I had yelled call 911. I was not entirely sure what happened after that with Turner.
Julie was standing now with the help of the EMT in her room. The ambulance had arrived in remarkable time. They had been literally across the street involved in a drill. I stood in front of Julie as the EMT assessed her situation. She asked Julie if she knew who I was and she responded "Mommy". then she was asked who Chuck was. He was standing a little behind me in the hall. Her response was clever ,"you're you". Julie seemed transported somewhere else.
As I entered the ER at nearby Shady Grove Adventist Hospital I took a much more aggressive stance with the nursing staff. There was not a bed available so they parked her in the hall. Between Chuck and me we were all over the staff asking for a doctor to look at Julie regardless of whether there was a room. We had been through waiting at GW while Julie was having her stroke. I feel if we had been attack dogs then maybe Julie's stroke would not have been so severe. Hindsight is better anyway.
A room was found and Julie was rushed into it and the nurses were unbelievably nice and on the ball. They understood what Julie had been through. She was taken quickly to get a cat scan. I have learned an abridged form of Julie's medical history highlighting only important information. However, Julie's abridged version always gets expounded on because as so many nurses have said to me she has a very complicated medical history. I had been taking a smaller notebook with meds lists and tests etc... with me while Julie was going through the arsenic. Then when she was having her heart issues I added ekg's to the notebook. After April I felt it was not necessary to tote the notebook Julie was cancer free and I was having shoulder and wrist problems from carrying all the stuff I had to carry. Oh well, I guessed I would be back to being more cautious for awhile.
Julie returned. Her grandparents had come and Alison and Turner were now in with us. Someone came by and asked who the celebrity was. The doctors determined Julie's seizure was one that fell into the parameters of a typical seizure after a massive head trauma. I knew there was a possibility she could have a seizure but I never told her. I figured she just might never have one and why scare her.
Julie received an infusion of dilantin, an anti-seizure drug. We would be going home with a prescription of the drug. Julie would most likely have to be on an anti-seizure drug the rest of her life.
Wednesday, July 15, 2009
Sunday, June 14, 2009
Beautiful Saturday's
There is something almost intoxicating about a crystal clear, true blue sky, a gentle breeze and temps in the low seventies to start out a perfect day. Loving to garden and finding so much pleasure in weeding here and there and deadheading a few bushes, I love mornings where the sky is so blue and the grass is so green. It is no surprise these are my two favorite colors. When I get upset and anxious there are two things I know that I can do to calm myself - cook or go to the garden.
August 2, 2008 was one of those terrific Saturdays. Julie had been home five days from GWUH. The normal routine for the family was underway. Julie was making fresh blueberry pancakes from scratch. Alison announced that it was great to have Julie home again. All was right with the world. Chuck and I were still tired from twenty-five days at the hospital. I was languishing comfortably in my bed happy that my family was home and everyone was doing all right. Julie would have two more rounds in the hospital getting chemo but all of that was doable. She was home now and looking good. There were still little reminders of what we were facing - Julie wearing a bandanna to cover a bald head and little notes with reminders that she take her ATRA (the drug that would save her). We had missed a dose on Thursday and I was adamant she not do this again. Little yellow notes were placed on doors, cabinets, mirrors and walls. Missing the ATRA was not going to happen again!
Alison was preparing to paint Turner's room. We had bought the paint the night before and his room was stacked and piles of Turner were in little corners of the first floor. Julie had decided that she felt up to painting. Children are definitely combinations of various genes. I can't fathom loving to don work clothes and do repetitive motions with a brush. Both daughters love to paint thanks to Grandaddy. Chuck was going to catch up on three weeks of work and I was going to do laundry and put my house, garden and life back together.
I always remember being told to have a plan. When writing do an outline, in college pick a major and map out your courses, start a business make a business plan. Life is all about plans or is it? Having a plan can be grounding, but you can't stop there. Life rarely goes as planned. Success goes to those who have the ability to be flexible. When life eats your plan up and spits it out one has to be able to come up with a new one "tout suite".
This Saturday was one of those days when what occurred was the farthest thing from any ones mind. Julie lost the paint brush in her left hand unbeknowst to her. Julie's skill was baseboard work. Julie's steady hand like her fathers could paint a straight line with such accuracy. Now there was paint on Julie and the floor and Alison looked down from her ladder at Julie just sitting on the floor with brush out of hand and paint where it shouldn't be. Alison asked Julie did she know that the brush was on the floor knowing that her answer was, of course. Instead Julie slurred her speech and sounded confused. A call to DAD to come in was made by AL. Chuck found a tired Julie and said go see your mother. Julie came into my room and was apologizing saying she just had done too much she guessed. She sat down on the ottoman head in hand. I took one look and my heart sank. I told Julie to smile. The left side of her face did not respond. I asked her to lift her arms above her head. The left arm struggled to get to shoulder height. I asked her her name. She gave it to me. I knew we had to call her doctors. She was having a stroke. The odd thing was it was episodic. In between episodes she would return to being Julie but would be tired and weepy. OH GOD!
Internist and oncologist agreed that it was best to get her to the ER at GW stat. Julie's symptoms had been going on thirty minutes maybe a little more. We had a window of three hours (I did not know for what reason until hours later). For the second time in less than a month Chuck and I were leaving Alison and Turner and taking our Bird to the hospital. Julie was adamant nothing was wrong. I sat back with Julie in the second seat in the car. She was going through these episodes and was losing the ability to hold her water bottle in her left hand. The important 3:00 dose of ATRA was coming up. I was prepared and not going to miss this dose. Little did I know I was giving her the drug that was causing these symptoms!!!! I was giving Julie the drug that turned her chromosomes back to normal and gave her the massive ischemic right hemisphere stroke.
Life is full of paradoxes - ATRA - all trans retinoic acid, a vitamin A derivative or arsenic trioxide, a known mineral substance and known poison. Which would you choose to give your child?
August 2, 2008 was one of those terrific Saturdays. Julie had been home five days from GWUH. The normal routine for the family was underway. Julie was making fresh blueberry pancakes from scratch. Alison announced that it was great to have Julie home again. All was right with the world. Chuck and I were still tired from twenty-five days at the hospital. I was languishing comfortably in my bed happy that my family was home and everyone was doing all right. Julie would have two more rounds in the hospital getting chemo but all of that was doable. She was home now and looking good. There were still little reminders of what we were facing - Julie wearing a bandanna to cover a bald head and little notes with reminders that she take her ATRA (the drug that would save her). We had missed a dose on Thursday and I was adamant she not do this again. Little yellow notes were placed on doors, cabinets, mirrors and walls. Missing the ATRA was not going to happen again!
Alison was preparing to paint Turner's room. We had bought the paint the night before and his room was stacked and piles of Turner were in little corners of the first floor. Julie had decided that she felt up to painting. Children are definitely combinations of various genes. I can't fathom loving to don work clothes and do repetitive motions with a brush. Both daughters love to paint thanks to Grandaddy. Chuck was going to catch up on three weeks of work and I was going to do laundry and put my house, garden and life back together.
I always remember being told to have a plan. When writing do an outline, in college pick a major and map out your courses, start a business make a business plan. Life is all about plans or is it? Having a plan can be grounding, but you can't stop there. Life rarely goes as planned. Success goes to those who have the ability to be flexible. When life eats your plan up and spits it out one has to be able to come up with a new one "tout suite".
This Saturday was one of those days when what occurred was the farthest thing from any ones mind. Julie lost the paint brush in her left hand unbeknowst to her. Julie's skill was baseboard work. Julie's steady hand like her fathers could paint a straight line with such accuracy. Now there was paint on Julie and the floor and Alison looked down from her ladder at Julie just sitting on the floor with brush out of hand and paint where it shouldn't be. Alison asked Julie did she know that the brush was on the floor knowing that her answer was, of course. Instead Julie slurred her speech and sounded confused. A call to DAD to come in was made by AL. Chuck found a tired Julie and said go see your mother. Julie came into my room and was apologizing saying she just had done too much she guessed. She sat down on the ottoman head in hand. I took one look and my heart sank. I told Julie to smile. The left side of her face did not respond. I asked her to lift her arms above her head. The left arm struggled to get to shoulder height. I asked her her name. She gave it to me. I knew we had to call her doctors. She was having a stroke. The odd thing was it was episodic. In between episodes she would return to being Julie but would be tired and weepy. OH GOD!
Internist and oncologist agreed that it was best to get her to the ER at GW stat. Julie's symptoms had been going on thirty minutes maybe a little more. We had a window of three hours (I did not know for what reason until hours later). For the second time in less than a month Chuck and I were leaving Alison and Turner and taking our Bird to the hospital. Julie was adamant nothing was wrong. I sat back with Julie in the second seat in the car. She was going through these episodes and was losing the ability to hold her water bottle in her left hand. The important 3:00 dose of ATRA was coming up. I was prepared and not going to miss this dose. Little did I know I was giving her the drug that was causing these symptoms!!!! I was giving Julie the drug that turned her chromosomes back to normal and gave her the massive ischemic right hemisphere stroke.
Life is full of paradoxes - ATRA - all trans retinoic acid, a vitamin A derivative or arsenic trioxide, a known mineral substance and known poison. Which would you choose to give your child?
Friday, May 15, 2009
"Tilley and T"
When my second daughter was born I knew she was going to be something special. Julie, her older sister, had been such a great first child. Not that I was putting pressure on Alison. Being a second child, myself, and following after a pretty remarkable sister, I knew that there was a specialness to being second. Alison was every bit her own person. My father, who loved both granddaughters affectionately referred to Alison as "Tilley" (short for Attila the Hun). This was a good nickname for my spirited daughter who ran not walked at 10 1/2 months. Blonde "Shirley Temple" curls and cute as can be Alison showed very little of being intimidated by anyone or thing. She seemed to mirror the same self confidence that her sister Julie had, until she was taken to gymnastics camp. The fact that she loved to jump, run and stand on her head led me to believe she was perfect for Marvatots Camp. Two days in and the camp counselor said 'take her home'. She was miserable being left with strangers. She would get used to going to school and doing activities out of the house. Honestly, Alison always has been a very social person. Still to this day I have never felt she was anything but special (not in a paste eating way, of course).
When you are the mother of three very different and wonderful children, I think it is very easy to love each one for who they are. The fact that there were five and half years difference between the girls and seventeen and twelve years between Julie and Alison and their little brother, makes it feel as if they were only children. Yes, in everyday blend together situations comparing them is easy and is done. Who wouldn't say 'why can't you clean up your plate like your sister". Honestly, my oldest daughter, Julie, who is so confident and industrious is a very messy cook and her room should be declared a disaster area. Alison is very organized and abhors messes and is full of energy. Turner, well, he is an eleven year old boy. He is, I'm sure, not the messiest or dirtiest. He is an excellent student and unbelievably focused.
"T" or "T-man" as Turner is called at home is the third and only boy. He has grown up in a house of adults. He has an amazing vocabulary, is a phenomenal reader and an amazing tennis player. He respects women, which has saved his life in this family. His dad loves and respects women so I think Turner comes by it naturally. But he is such a boy. I grew up with an older sister. I went to an all girls school and an all woman's college. I like boys but they are different creatures. They are wired differently.
Alison was a "tom-boy". My husband always referred to her as 'his transition player'. She was active and good at sports. Julie has always loved to talk. She became an avid reader when she reached high school. She has loved cooking since she was three (still does) and as a little girl loved to get dressed up, go out to fancy restaurants, and plays etc. Alison would dress up reluctantly and would wear a pair of shorts underneath her dress just in case. Turner loves his suits, ties and sports jackets. However, now that he is in middle school he loves to look like every other 'tweener'.
Still all five of us live together under one roof. Many criticize and say it is not healthy. I disagree. Many cultures present and past have grown on the foundation of family staying together and thriving. The familly actually was the strongest bond people had until "nationalism " surged in the 1900's in Europe. I say to each family let them go their own way. Dinners are rarely dull. There is conversation about everything. Discussions abound and some, in the course of twelve years or so, have ended in anger. We are, I think, a close family.
It is May 2009. Ten months have come and gone since the APL diagnoses and nine from the devastating stroke. Only now am I beginning to see the toll of these two events on my family. It is not that I am dimwitted (perhaps I am). The reality is I have been consumed each day with Julie and her rehabilitation from the stroke and her regimen of arsenic treatments. I just have not had the energy or the time to think and reflect. During Julie's extended stays in the hospital for her cancer and stroke, Chuck's and my mindset was entirely different than normal. We lived from moment to moment. The only time I ventured to think and plan for the future was when Julie's situation seemed to stabilize. Then and only then could I breath easier and comfortably leave the present to focus on the future. This is a mode of thinking that after three months is hard to break. Furthermore, with Julie's rehabilitation being day to day we realize that results will come in months and years. This is a far cry from our instantaneous mindset of today's culture. So I offer this perspective as an explanation, perhaps, to why I have been so blind.
I walk around during the day thinking I am doing just fine. When in fact I am just surviving myself. I have Crohns disease. I have had it since I was 19. On good days I feel like I am coming down with "swine-flu". The worst days I feel like road kill on the side of 495. I also happen to be going through, what I hope, is the last stage of perimenopause. Not to make excuses, but as an old friend used to say "where ever you are going there you are". I hazard to say that I have not given too much thought to Alison and Turner. What's the saying "the squeaky wheel gets the oil".
My husband, Chuck, is a saint. He gets up every morning and gets Turner breakfast and takes him to school. He is the primary grocery shopper. He is the glue that keeps us together and makes every day work. Chuck is a cartoonist, writer and marketing consultant. His office is at home. Since October he has been scrambling to make up for all the time he lost at the hospital. To be perfectly honest I don't think he has given much thought to all that Al and Turner have been through.
The night of July 3rd, last year, I was very concerned about Alison and Turner going home late . I knew that they both were scared. I couldn't leave Julie nor could Chuck. At midnight Julie had still not received her first transfusion. This was now fifteen hours later from when the doctor had said she had to go to the hospital to get transfused. The nurses kept saying it was critical and the blood needed to be brought up to them right away. While this was going on I was aware how late it was and that Al and T needed to go home. I knew they would be ok. I never for once thought that Alison was not capable of taking care of Turner. I figured they both would sleep in our bed, which they did. It did not cross my mind that Alison was now the older sister. Julie has always been a second mother to Alison and Turner. Many times this was appreciated and other times not so much. Tonight Alison was on her own. With her father and me 'awol' at the hospital, Alison was the first line of everything for Turner. Turner is not entirely helpless. He actually is very capable of taking care of a nation let alone himself. However, he is the youngest of three and has taken the "princely order" that has been bestowed on him seriously. As the month of July wore on they were becoming fairly competent taking care of the house and the cats and themselves. We were fortunate that two weeks into Julie's cancer Turner's best friend and his family returned from camp and a trip. They became Turner's second family and were supportive and wonderful to Alison. Raymond, Alison's friend and friend of the family, took Turner on as a little brother. Chuck's parents were wonderful in picking Turner up from tennis camp and supporting him at matches. Neighbors were fixing meals for them and watching out for them when they came home at night. It was not like they were out in the world with no one. The two of them did very well taking care of each other. When things were very scary Turner asked Alison how to pray. I am not positive of the exact answer but I feel confident it was a good one. They learned to lean on each other and be strong for one another. The house and cats faired pretty well for an almost three months absence by me. Other than a gardenia tree that did not weather "the two blondes" everything else was good.
I believed when we brought Julie home from National Rehabilitation Hospital on September 18th that the hardest part of all of this was over. My family was back together and we could get through anything. Now eight months later I look back and realize the last eight months have been just as hard if not harder than the previous three. I totally misjudged what life would be like. A tumultuous roller coaster ride in a tornado would be smooth sailing compared to the emotions that have flowed in the past eight months. Seriously, if I had known then what I know now I would have gotten crash helmets and safety suits for the entire family and would have tethered each one of us down to something solid. I would also have made sure we had lots of wine. Each day has been filled with swirling emotions and venom that has flowed out from some deep spot inside that has been hidden forever. Women's hormones are fascinating and powerful. In the movie "The Mummy" the sky in the desert becomes the Mummy's head. All at once he inhales all the energy and power of the desert and exhales with unnatural and god-like power blowing and obliterating all that comes in its path. That pretty much sums up the energy of the last eight months.
When you are the mother of three very different and wonderful children, I think it is very easy to love each one for who they are. The fact that there were five and half years difference between the girls and seventeen and twelve years between Julie and Alison and their little brother, makes it feel as if they were only children. Yes, in everyday blend together situations comparing them is easy and is done. Who wouldn't say 'why can't you clean up your plate like your sister". Honestly, my oldest daughter, Julie, who is so confident and industrious is a very messy cook and her room should be declared a disaster area. Alison is very organized and abhors messes and is full of energy. Turner, well, he is an eleven year old boy. He is, I'm sure, not the messiest or dirtiest. He is an excellent student and unbelievably focused.
"T" or "T-man" as Turner is called at home is the third and only boy. He has grown up in a house of adults. He has an amazing vocabulary, is a phenomenal reader and an amazing tennis player. He respects women, which has saved his life in this family. His dad loves and respects women so I think Turner comes by it naturally. But he is such a boy. I grew up with an older sister. I went to an all girls school and an all woman's college. I like boys but they are different creatures. They are wired differently.
Alison was a "tom-boy". My husband always referred to her as 'his transition player'. She was active and good at sports. Julie has always loved to talk. She became an avid reader when she reached high school. She has loved cooking since she was three (still does) and as a little girl loved to get dressed up, go out to fancy restaurants, and plays etc. Alison would dress up reluctantly and would wear a pair of shorts underneath her dress just in case. Turner loves his suits, ties and sports jackets. However, now that he is in middle school he loves to look like every other 'tweener'.
Still all five of us live together under one roof. Many criticize and say it is not healthy. I disagree. Many cultures present and past have grown on the foundation of family staying together and thriving. The familly actually was the strongest bond people had until "nationalism " surged in the 1900's in Europe. I say to each family let them go their own way. Dinners are rarely dull. There is conversation about everything. Discussions abound and some, in the course of twelve years or so, have ended in anger. We are, I think, a close family.
It is May 2009. Ten months have come and gone since the APL diagnoses and nine from the devastating stroke. Only now am I beginning to see the toll of these two events on my family. It is not that I am dimwitted (perhaps I am). The reality is I have been consumed each day with Julie and her rehabilitation from the stroke and her regimen of arsenic treatments. I just have not had the energy or the time to think and reflect. During Julie's extended stays in the hospital for her cancer and stroke, Chuck's and my mindset was entirely different than normal. We lived from moment to moment. The only time I ventured to think and plan for the future was when Julie's situation seemed to stabilize. Then and only then could I breath easier and comfortably leave the present to focus on the future. This is a mode of thinking that after three months is hard to break. Furthermore, with Julie's rehabilitation being day to day we realize that results will come in months and years. This is a far cry from our instantaneous mindset of today's culture. So I offer this perspective as an explanation, perhaps, to why I have been so blind.
I walk around during the day thinking I am doing just fine. When in fact I am just surviving myself. I have Crohns disease. I have had it since I was 19. On good days I feel like I am coming down with "swine-flu". The worst days I feel like road kill on the side of 495. I also happen to be going through, what I hope, is the last stage of perimenopause. Not to make excuses, but as an old friend used to say "where ever you are going there you are". I hazard to say that I have not given too much thought to Alison and Turner. What's the saying "the squeaky wheel gets the oil".
My husband, Chuck, is a saint. He gets up every morning and gets Turner breakfast and takes him to school. He is the primary grocery shopper. He is the glue that keeps us together and makes every day work. Chuck is a cartoonist, writer and marketing consultant. His office is at home. Since October he has been scrambling to make up for all the time he lost at the hospital. To be perfectly honest I don't think he has given much thought to all that Al and Turner have been through.
The night of July 3rd, last year, I was very concerned about Alison and Turner going home late . I knew that they both were scared. I couldn't leave Julie nor could Chuck. At midnight Julie had still not received her first transfusion. This was now fifteen hours later from when the doctor had said she had to go to the hospital to get transfused. The nurses kept saying it was critical and the blood needed to be brought up to them right away. While this was going on I was aware how late it was and that Al and T needed to go home. I knew they would be ok. I never for once thought that Alison was not capable of taking care of Turner. I figured they both would sleep in our bed, which they did. It did not cross my mind that Alison was now the older sister. Julie has always been a second mother to Alison and Turner. Many times this was appreciated and other times not so much. Tonight Alison was on her own. With her father and me 'awol' at the hospital, Alison was the first line of everything for Turner. Turner is not entirely helpless. He actually is very capable of taking care of a nation let alone himself. However, he is the youngest of three and has taken the "princely order" that has been bestowed on him seriously. As the month of July wore on they were becoming fairly competent taking care of the house and the cats and themselves. We were fortunate that two weeks into Julie's cancer Turner's best friend and his family returned from camp and a trip. They became Turner's second family and were supportive and wonderful to Alison. Raymond, Alison's friend and friend of the family, took Turner on as a little brother. Chuck's parents were wonderful in picking Turner up from tennis camp and supporting him at matches. Neighbors were fixing meals for them and watching out for them when they came home at night. It was not like they were out in the world with no one. The two of them did very well taking care of each other. When things were very scary Turner asked Alison how to pray. I am not positive of the exact answer but I feel confident it was a good one. They learned to lean on each other and be strong for one another. The house and cats faired pretty well for an almost three months absence by me. Other than a gardenia tree that did not weather "the two blondes" everything else was good.
I believed when we brought Julie home from National Rehabilitation Hospital on September 18th that the hardest part of all of this was over. My family was back together and we could get through anything. Now eight months later I look back and realize the last eight months have been just as hard if not harder than the previous three. I totally misjudged what life would be like. A tumultuous roller coaster ride in a tornado would be smooth sailing compared to the emotions that have flowed in the past eight months. Seriously, if I had known then what I know now I would have gotten crash helmets and safety suits for the entire family and would have tethered each one of us down to something solid. I would also have made sure we had lots of wine. Each day has been filled with swirling emotions and venom that has flowed out from some deep spot inside that has been hidden forever. Women's hormones are fascinating and powerful. In the movie "The Mummy" the sky in the desert becomes the Mummy's head. All at once he inhales all the energy and power of the desert and exhales with unnatural and god-like power blowing and obliterating all that comes in its path. That pretty much sums up the energy of the last eight months.
Tuesday, May 5, 2009
Ten months and one day
Today is ten months and one day from the day of diagnoses for APL leukemia for Julie. It all seems surreal and still very vivid in my mind. At the time I did not truly understand how gravely ill she was. I was not in denial. I just knew she was going to get better and that was what I was focusing on. I took the information the doctor explained to my husband and me very seriously but always pulled out the positive points and hung on to them.
APL (acute promylecyte leukemia) is a very rare form of leukemia. Julie's doctor is well known in his field, highly respected and has been practicing for a long time. He had only treated one other patient in his career with this form of leukemia. The good news about this rare illness is that there is a very specific treatment. There is no trying this or that to see which treatment works the best on a patient. This disease has specific drugs and chemotherapy regimens. The results are good at putting patients into a remission and then keeping them in a "complete remission". They even have a specific regimen if a relapse occurs. So I was encouraged. Knowing what exactly is involved with this illness and the process of getting rid of it is very comforting when you have just survived the equivalent of a nuclear bomb being dropped on you.
Now, I knew my daughter was going to get seven days of heavy duty chemo (two kinds, ARA-C and daunirubicin). Along with these chemos, Julie would be taking what the medical proffession considers the 'life - saver drug' in this leukemia - ATRA ( all trans retinoic acid) which is a vitamin A derivative. The ATRA is in pill form and is responsible for turning the errant chromosomes 15 and 17 back to normal. You see they are the culprits in causing this leukemia. At some point, and no one knows why, these two chromosomes decide to transmute (meaning they go to the dark side upsetting your bodies healthy operation).
After the seven days of heavy duty chemo that I referred to as 'the big guns', Julie would remain in a private room until her blood counts improved. The chemo basically kills everything cancer as well as the good cells. There is no discrimination with chemotherapy. So her white and red counts would be very low. She would become neutropenic. This means she is unable to fight off any virus or bacteria. No fresh fruit or vegetables would be allowed until her counts rise. No fresh flowers and everyone has to scrub in before they can come into her room. This process to getting her blood levels up would take an agonizing two weeks or more.
She is allowed to go home for a month. Then starts the process all over again. The cycle is repeated : two weeks in the hospital in September; then home for a month, and repeats everything in October. At this point she is done with the induction treatments. While all of this is going on she continues to take the ATRA, for two years continuously.
Everything was clear. There was the plan. I knew she would get through everything and go into remission.
Twenty-five long days and she was able to come home. The family was back under the same roof again. Our "Bird" was tired but was on the mend. She lost her hair but I did not think she looked bad, kind of cute with her bandannas.
We took Julie back to the doctor four days after coming home. The doctor was pleased with her second bone marrow biopsy. It showed no large cell cancer cells. The chromosomes were still transmuted but that was to be expected. She was not to come back for 10 days just go home and build strength. All was going well.
Saturday morning she got up and made the family fresh blueberry pancakes and then got in painting clothes to help her sister paint their brothers bedroom.
We had weathered the storm and we were sailing into blue skies. Then the unthinkable happened. My daughter, Julie, had a massive right brain stroke and almost died from it.
APL (acute promylecyte leukemia) is a very rare form of leukemia. Julie's doctor is well known in his field, highly respected and has been practicing for a long time. He had only treated one other patient in his career with this form of leukemia. The good news about this rare illness is that there is a very specific treatment. There is no trying this or that to see which treatment works the best on a patient. This disease has specific drugs and chemotherapy regimens. The results are good at putting patients into a remission and then keeping them in a "complete remission". They even have a specific regimen if a relapse occurs. So I was encouraged. Knowing what exactly is involved with this illness and the process of getting rid of it is very comforting when you have just survived the equivalent of a nuclear bomb being dropped on you.
Now, I knew my daughter was going to get seven days of heavy duty chemo (two kinds, ARA-C and daunirubicin). Along with these chemos, Julie would be taking what the medical proffession considers the 'life - saver drug' in this leukemia - ATRA ( all trans retinoic acid) which is a vitamin A derivative. The ATRA is in pill form and is responsible for turning the errant chromosomes 15 and 17 back to normal. You see they are the culprits in causing this leukemia. At some point, and no one knows why, these two chromosomes decide to transmute (meaning they go to the dark side upsetting your bodies healthy operation).
After the seven days of heavy duty chemo that I referred to as 'the big guns', Julie would remain in a private room until her blood counts improved. The chemo basically kills everything cancer as well as the good cells. There is no discrimination with chemotherapy. So her white and red counts would be very low. She would become neutropenic. This means she is unable to fight off any virus or bacteria. No fresh fruit or vegetables would be allowed until her counts rise. No fresh flowers and everyone has to scrub in before they can come into her room. This process to getting her blood levels up would take an agonizing two weeks or more.
She is allowed to go home for a month. Then starts the process all over again. The cycle is repeated : two weeks in the hospital in September; then home for a month, and repeats everything in October. At this point she is done with the induction treatments. While all of this is going on she continues to take the ATRA, for two years continuously.
Everything was clear. There was the plan. I knew she would get through everything and go into remission.
Twenty-five long days and she was able to come home. The family was back under the same roof again. Our "Bird" was tired but was on the mend. She lost her hair but I did not think she looked bad, kind of cute with her bandannas.
We took Julie back to the doctor four days after coming home. The doctor was pleased with her second bone marrow biopsy. It showed no large cell cancer cells. The chromosomes were still transmuted but that was to be expected. She was not to come back for 10 days just go home and build strength. All was going well.
Saturday morning she got up and made the family fresh blueberry pancakes and then got in painting clothes to help her sister paint their brothers bedroom.
We had weathered the storm and we were sailing into blue skies. Then the unthinkable happened. My daughter, Julie, had a massive right brain stroke and almost died from it.
Tuesday, April 21, 2009
Today I embark on a new facit of this journey that began last July. Ten months ago my daughter was diagnosed with a rare form of leukemia. She had been the picture of health for 28 years. Towards the end of June she began having what the family believed was a terrible migraine. Her father and I finally encouraged her to go to the doctor.
She was determined to go to work on Wednesday, July 2. Her doctor was five blocks from her office. Despite this she called me to come downtown to take her to the doctors. The doctor speculated that she had a viral infection. Blood was drawn. With the holiday weekend starting the results from the blood tests would be done by Tuesday. The following morning at 9:15 the doctor called my daughter at home to tell her to get to the hospital at once. She needed to have a blood transfusion. The doctor called back quickly with a change of plan. He instructed me to take her to a hematology/oncologist for a bone marrow biopsy.
Her father and I took our very scared oldest daughter to the doctors. We were told that the situation was very "worrisome".
So everything changed in our family's life. My 11 year old son asked me if his big sister was going to die. I told him "no" with absolute faith that I was right. When the doctor was telling my husband and me the situation was "worrisome" I rationalized that he could have said the situation is "fatal" or "critical". I figured "worrisome" was not good but there was hope. I had no idea how life was going to change for the entire family.
My family consists of my husband of 30 years, my two daughters (ages 29 and 24) and my son who is 11. We all live in the same house with six cats.
She was determined to go to work on Wednesday, July 2. Her doctor was five blocks from her office. Despite this she called me to come downtown to take her to the doctors. The doctor speculated that she had a viral infection. Blood was drawn. With the holiday weekend starting the results from the blood tests would be done by Tuesday. The following morning at 9:15 the doctor called my daughter at home to tell her to get to the hospital at once. She needed to have a blood transfusion. The doctor called back quickly with a change of plan. He instructed me to take her to a hematology/oncologist for a bone marrow biopsy.
Her father and I took our very scared oldest daughter to the doctors. We were told that the situation was very "worrisome".
So everything changed in our family's life. My 11 year old son asked me if his big sister was going to die. I told him "no" with absolute faith that I was right. When the doctor was telling my husband and me the situation was "worrisome" I rationalized that he could have said the situation is "fatal" or "critical". I figured "worrisome" was not good but there was hope. I had no idea how life was going to change for the entire family.
My family consists of my husband of 30 years, my two daughters (ages 29 and 24) and my son who is 11. We all live in the same house with six cats.
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