Around the time we finally got Jesse all squared away, Ken finished his second round of chemotherapy. He was doing amazingly well, considering all he had been through. Dr. Schlabach said that he felt Ken might benefit from some radiation treatments now that they had narrowed down the area in his abdomen that would be affected. He made us an appointment with ANOTHER oncologist–this time, a radiation oncologist. Before Ken was diagnosed, I had no idea there were so many different kinds of oncologists. It felt like we were going to meet them all before it was over with.
The radiation oncologist’s name was Jeffrey Gefter. A couple at our church who had been through cancer treatment earlier, told us that Dr. Gefter was a wonderful man and a great doctor. They also told us to expect to wait a long time to see him. He was the head of that department, but he liked to meet with every patient treated in the radiology center. Turns out, they were absolutely correct–about the wait–that is. I think our appointment was right after lunch, probably 1:00. They took some x-rays, did some measurements, marked Ken’s abdomen (they call it “tattooing”) to determine where to aim the radiation, took Ken’s vitals and sent us back to the waiting room. We waited, waited, waited, waited, and WAITED!!!!! We waited so long that I had to call and make arrangements for someone else to be at the house when the boys got off the school bus. I think it was finally after 6:00 p.m. before Dr. Gefter came in. I know that the office staff had already left for the day. But, I have to admit, that Dr. G. was worth the wait. He showed us all of Ken’s x-rays, explained which areas they would radiate, and explained all of the side effects we could expect. He was very warm and compassionate and even though it was late, he encouraged us to voice our concerns and ask all of the questions we needed to ask. It was probably around 8:00 before we were ready to leave. Dr. Gefter said his staff would call and let us know when the treatments would begin.
Once again, Ken and I left Erlanger Hospital feeling like we were treading uncharted waters. Chemotherapy, surgery, chemo again, and now radiation. These were all things that we had been told at the outset would probably be of no value, given Ken’s initial diagnosis and prognosis. And every time we asked if the prognosis had changed, we would get vague answers and shoulder shrugs. “Only God knows”, was a phrase we heard a lot. I know it was the truth, but I wanted to jump up and down and scream, “Why can’t God give us a clue?!”
Diagnosis... and relief.
When I got up the next morning, I decided to go ahead and try to get Jesse an appointment with another doctor before I headed home to Ringgold. There weren’t very many developmental psychologists in the area, so the pickings were going to be slim. I wanted to go with a medical doctor, but most of the psychiatrists in the area either didn’t see children or required a referral or had a waiting list a mile long. I finally was able to get an appointment with a counselor in Ringgold for the next week. She said they could do some testing to help determine what was going on with Jesse. I had, truthfully, been considering counseling for the boys anyway. Ken’s illness had been so hard on them both. I figured maybe they would be more willing to talk about it to someone other than me and Ken.
In a final desperate move, I called TEAM Evaluation Center in Chattanooga just to find out how long their waiting list was. The lady I spoke with said, “We just had a cancellation. Can you bring him Tuesday?” I was convinced that my ears must be playing a trick on my brain. “Which Tuesday?” I asked. “This coming Tuesday”, she said. Sigh... Isn’t that just like God? You struggle and struggle with a thing and when you FINALLY give up and turn it over to Him, He smiles and pats you on your stubborn little head. “YES!” I said, “We will definitely be there this coming Tuesday!” I shouted, “Hallelujah” and “Praise God” a few hundred times and hurried home to tell Ken.
The next week Jesse started his appointments with the counselor and at TEAM Evaluation. I poured out my soul at both places and was very clear with them that we were trying to determine which of the two diagnoses was appropriate. Over the course of the next two weeks, he had appointments every day at one place or the other. When all of the testing was finally said and done, everyone who had seen Jesse OVERWHELMINGLY confirmed the Asperger’s Syndrome diagnosis and ABSOLUTELY dismissed the Bipolar Disorder diagnosis. (Thanks, again, God.) The moral of this story is that, as a parent, you know your child BEST. If someone tries to give you a diagnosis you don’t agree with, GET A SECOND OPINION!!!
Ken and I were so relieved. We had our medical diagnosis of AS, so Catoosa County would have to offer special education services to Jesse. He was finally going to get the help (and hopefully, the understanding) he had been needing ALL ALONG. In the following months, even up until he died, Ken thanked me several times for not just going along with that first doctor and for making sure that Jesse was diagnosed correctly and treated appropriately. Interestingly enough, while I was taking Jesse to TEAM Evaluation, I met several parents who had taken their children to that same doctor. I learned that his nickname was “medicine man” and that BPD and Abilify were pretty much his standard diagnosis and treatment with any kid that walked in the door. You see, if he puts a kid on Abilify, that kid would have to be followed closely by a doctor. More office visits, more money. It was that simple.
So, to any parents who might be reading this, God gives us instincts for a reason. Trust God and trust your instincts!
In a final desperate move, I called TEAM Evaluation Center in Chattanooga just to find out how long their waiting list was. The lady I spoke with said, “We just had a cancellation. Can you bring him Tuesday?” I was convinced that my ears must be playing a trick on my brain. “Which Tuesday?” I asked. “This coming Tuesday”, she said. Sigh... Isn’t that just like God? You struggle and struggle with a thing and when you FINALLY give up and turn it over to Him, He smiles and pats you on your stubborn little head. “YES!” I said, “We will definitely be there this coming Tuesday!” I shouted, “Hallelujah” and “Praise God” a few hundred times and hurried home to tell Ken.
The next week Jesse started his appointments with the counselor and at TEAM Evaluation. I poured out my soul at both places and was very clear with them that we were trying to determine which of the two diagnoses was appropriate. Over the course of the next two weeks, he had appointments every day at one place or the other. When all of the testing was finally said and done, everyone who had seen Jesse OVERWHELMINGLY confirmed the Asperger’s Syndrome diagnosis and ABSOLUTELY dismissed the Bipolar Disorder diagnosis. (Thanks, again, God.) The moral of this story is that, as a parent, you know your child BEST. If someone tries to give you a diagnosis you don’t agree with, GET A SECOND OPINION!!!
Ken and I were so relieved. We had our medical diagnosis of AS, so Catoosa County would have to offer special education services to Jesse. He was finally going to get the help (and hopefully, the understanding) he had been needing ALL ALONG. In the following months, even up until he died, Ken thanked me several times for not just going along with that first doctor and for making sure that Jesse was diagnosed correctly and treated appropriately. Interestingly enough, while I was taking Jesse to TEAM Evaluation, I met several parents who had taken their children to that same doctor. I learned that his nickname was “medicine man” and that BPD and Abilify were pretty much his standard diagnosis and treatment with any kid that walked in the door. You see, if he puts a kid on Abilify, that kid would have to be followed closely by a doctor. More office visits, more money. It was that simple.
So, to any parents who might be reading this, God gives us instincts for a reason. Trust God and trust your instincts!
Screaming at God
I decided that I needed to be by myself for a little while so I could read all the BPD/Abilify research and try to sort some things out. I talked to Ken about it and he agreed. He usually always deferred to my judgment when it came to the issues of the boys’ educational and health needs. And at this point in our lives, Ken was so pre-occupied and worried about his own health and our future, that he just couldn’t handle one more thing. Luckily, he was doing well enough physically and had finally mastered the art of hooking himself up to “Bill” (feeding pump), that he was okay with me leaving for a little while. I decided to go down to Dalton, GA, about 1/2 an hour away. I gathered up all of the research, kissed all of my guys and took off down the road. I got a hotel room for one night, treated myself to dinner at the Cracker Barrel, and settled in to start reading.
I had just started wading through the pile of articles when my cell phone rang. It was Mama. She had called the house to check on us. When she asked for me, Jesse said, “She left. She’s at a hotel.” (That, by the way, is a typical type of response from a person with Asperger’s Syndrome.) Instead of telling Jesse to give the phone to Ken, Mama called my cell phone, all in a panic, wanting to know “what was going on”. After several minutes of assuring Mama that everything was okay and I only needed some quiet to deal with the situation at hand, she finally calmed down. Truthfully, though, I’m not sure she was completely reassured. Later on, I wondered why she would even entertain the thought that I could possibly “leave”. I had to take care of Ken. And I would NEVER, EVER, EVER leave my boys. But, at that point, I guess she may have been worried for my sanity. Some days, so was I.
Every article I picked up just seemed to stab at my heart. And, yes, Jesse did display a few characteristics of a person dealing with Bipolar Disorder. But the very same characteristics he displayed could also be attributed to someone dealing with Asperger’s Syndrome. The information on Abilify was frightening. It was classified as an “anitpsychotic” drug, falling into the general category of “psychotropic” drugs. Psychotropic drugs ALTER THE CHEMISTRY OF THE BRAIN!!!!! Preliminary studies had shown fairly good results in adults with BPD. But there was ABSOLUTELY NO RESEARCH on how this drug affected children! In fact, there was very little research about children with BPD! The possible side effects of Abilify were enough to send me screaming for the exit, and those were just the mild ones. I knew that no matter what else we decided about Jesse, there was NO POSSIBLE WAY that we could agree to give this brain-altering drug to our 12-year-old son.
As the evening progressed, my research time began to turn into “wailing” time. Before long, I was pounding the furniture and screaming at God. I just couldn’t understand why this wonderful boy of ours, who had already been through more hell than any adult should have to endure, was now having to deal with another potentially horrible situation, not of his own making or choosing. Why in the world, couldn’t God just give Jesse a break for once?
Finally, exhaustion settled in and I fell asleep. Don’t know how long I slept, but when I woke up in the wee hours, I knew what we had to do. We had to get another opinion. In my heart of hearts, I just knew that Jesse was NOT bipolar. I also knew that he DID have Asperger’s Syndrome. That decision made, I drifted back to sleep.
I had just started wading through the pile of articles when my cell phone rang. It was Mama. She had called the house to check on us. When she asked for me, Jesse said, “She left. She’s at a hotel.” (That, by the way, is a typical type of response from a person with Asperger’s Syndrome.) Instead of telling Jesse to give the phone to Ken, Mama called my cell phone, all in a panic, wanting to know “what was going on”. After several minutes of assuring Mama that everything was okay and I only needed some quiet to deal with the situation at hand, she finally calmed down. Truthfully, though, I’m not sure she was completely reassured. Later on, I wondered why she would even entertain the thought that I could possibly “leave”. I had to take care of Ken. And I would NEVER, EVER, EVER leave my boys. But, at that point, I guess she may have been worried for my sanity. Some days, so was I.
Every article I picked up just seemed to stab at my heart. And, yes, Jesse did display a few characteristics of a person dealing with Bipolar Disorder. But the very same characteristics he displayed could also be attributed to someone dealing with Asperger’s Syndrome. The information on Abilify was frightening. It was classified as an “anitpsychotic” drug, falling into the general category of “psychotropic” drugs. Psychotropic drugs ALTER THE CHEMISTRY OF THE BRAIN!!!!! Preliminary studies had shown fairly good results in adults with BPD. But there was ABSOLUTELY NO RESEARCH on how this drug affected children! In fact, there was very little research about children with BPD! The possible side effects of Abilify were enough to send me screaming for the exit, and those were just the mild ones. I knew that no matter what else we decided about Jesse, there was NO POSSIBLE WAY that we could agree to give this brain-altering drug to our 12-year-old son.
As the evening progressed, my research time began to turn into “wailing” time. Before long, I was pounding the furniture and screaming at God. I just couldn’t understand why this wonderful boy of ours, who had already been through more hell than any adult should have to endure, was now having to deal with another potentially horrible situation, not of his own making or choosing. Why in the world, couldn’t God just give Jesse a break for once?
Finally, exhaustion settled in and I fell asleep. Don’t know how long I slept, but when I woke up in the wee hours, I knew what we had to do. We had to get another opinion. In my heart of hearts, I just knew that Jesse was NOT bipolar. I also knew that he DID have Asperger’s Syndrome. That decision made, I drifted back to sleep.
Unexpected Turn
I took Jesse to see the Developmental Psychologist, in hopes of getting a medical diagnosis of Asperger’s so the county school system would have to offer him services. When we went in, they handed me about three “parental observation scales” to fill out while they did vitals on Jesse. I filled them all out and we waited to see the Dr. They called us back and the Dr. began a thorough physical exam on Jesse. He also was asking Jesse questions about school and the difficulties he had been experiencing. Initially, I was very impressed with the Dr.’s thoroughness and professional manner.
After the physical exam was finished, the Dr. sent Jesse back to the waiting room so that we could talk. He asked me what I thought about the idea of an Asperger’s diagnosis. I told him that I believed it was dead-on. He sort of smirked and said, “Okay, if that’s what you think, we’ll let that diagnosis stand, but what’s really going on is that Jesse is BIPOLAR. Now, imagine if you can, how that felt. I had only just come to terms with the fact that my child was what the world considered disabled. Now this man, who had only ever spent about 30 minutes with Jesse, was telling me that he was severely mentally ill. I started feeling flushed and my senses seemed to narrow down, so I probably did not hear everything else that the Dr. said. I do remember hearing him say that he wanted to start Jesse “right away” on a drug called “Abilify”. Talked like it was the greatest medication on the planet.
I think by this point I was actually speechless because the Dr. said, “I can see that this wasn’t what you were expecting to hear. Do you need a couple of days to think it over?” (Well, DUH!) I nodded my head and hurriedly headed to the door. The Dr. said, “Once you’ve thought about it, you’ll see that I’m right. Give me a call and we’ll get Jesse started on that medication as quick as we can!” I paid the bill, grabbed Jesse and headed for home. Trying to make it home without totally breaking down in front of Jesse was extremely difficult, but somehow I managed it. It’s a good thing Ken wasn’t home when we got there, because it took the better part of an hour for me to calm down enough to discuss anything sensibly.
I told Ken what the Dr. had said. I explained, as best I could, what Bipolar Disorder was and what that would mean for Jesse’s future and our future too. Ken was as upset as I was. He ABSOLUTELY did not want to put Jesse on any medication (which didn’t surprise me, considering how he was with his own meds). I told him that I needed to do some research before we could make a truly informed decision. I got online and started scouring the internet for any information about BPD and Abilify. There was a lot of information – so much, in fact, that I was completely and totally overwhelmed. The more I tried to read, the more physically ill I became. I finally had to stop. I put all of the info into a file folder and put it away. What were we going to do now?
After the physical exam was finished, the Dr. sent Jesse back to the waiting room so that we could talk. He asked me what I thought about the idea of an Asperger’s diagnosis. I told him that I believed it was dead-on. He sort of smirked and said, “Okay, if that’s what you think, we’ll let that diagnosis stand, but what’s really going on is that Jesse is BIPOLAR. Now, imagine if you can, how that felt. I had only just come to terms with the fact that my child was what the world considered disabled. Now this man, who had only ever spent about 30 minutes with Jesse, was telling me that he was severely mentally ill. I started feeling flushed and my senses seemed to narrow down, so I probably did not hear everything else that the Dr. said. I do remember hearing him say that he wanted to start Jesse “right away” on a drug called “Abilify”. Talked like it was the greatest medication on the planet.
I think by this point I was actually speechless because the Dr. said, “I can see that this wasn’t what you were expecting to hear. Do you need a couple of days to think it over?” (Well, DUH!) I nodded my head and hurriedly headed to the door. The Dr. said, “Once you’ve thought about it, you’ll see that I’m right. Give me a call and we’ll get Jesse started on that medication as quick as we can!” I paid the bill, grabbed Jesse and headed for home. Trying to make it home without totally breaking down in front of Jesse was extremely difficult, but somehow I managed it. It’s a good thing Ken wasn’t home when we got there, because it took the better part of an hour for me to calm down enough to discuss anything sensibly.
I told Ken what the Dr. had said. I explained, as best I could, what Bipolar Disorder was and what that would mean for Jesse’s future and our future too. Ken was as upset as I was. He ABSOLUTELY did not want to put Jesse on any medication (which didn’t surprise me, considering how he was with his own meds). I told him that I needed to do some research before we could make a truly informed decision. I got online and started scouring the internet for any information about BPD and Abilify. There was a lot of information – so much, in fact, that I was completely and totally overwhelmed. The more I tried to read, the more physically ill I became. I finally had to stop. I put all of the info into a file folder and put it away. What were we going to do now?
Asperger's Syndrome
I went home and told Ken what the teacher had said. I then went online and began to do some research. The more I read, the more convinced I was that Jesse did, indeed, have Asperger's Syndrome. So many things suddenly made so much sense. For example, all of the sensory oddities Jesse displayed -- like how he always smelled his food before he would eat it, and how he would close his eyes whenever he was in a loud room, and how he refused to wear his pants up around his waist because he didn't like the way they felt around his tummy. And now I understood the whole "Mommy, there's a bump in my sock!" deal. When Jesse was about two, I spent the better part of three months yanking off his shoes and "fixing" seemingly imaginary bumps in his socks. Then, suddenly one day, for reasons known only to Jesse, he stopped complaining.
The research went on to say things are always black or white for kids with AS -- no gray areas. That so explained why Jesse would argue with you over and over about the same thing, even if you could prove to him irrevocably that he was wrong. AS kids perceive things differently and the way they perceive them is their "truth". I smiled through tears when I read that because it brought to mind a time when we were on vacation in North Carolina. We visited the Cherokee Reservation while we there. Michaelann and Kelly (Jan's daughter and Michaelann's best buddy) decided it would be fun to give all of us tribal nicknames. You know what they nicknamed Jesse? "Argues With Trees" (Benjamin, BTW, was "Squirming Dimple").
The school psychometrist came out and tested Jesse for a whole day and a half. Once finished, she called me in for a meeting. She said, "Yes, I believe Jesse probably has Asperger's, and yes, Jesse definitely has a learning disability, but it's not severe enough for us to offer him any special education services." She was basically telling me that because my child happened to be intelligent, the county wouldn't be serving him. Went home a little confused and disheartened. The next day, though, several of Jesse's teachers made a point to come into the library where I was volunteering and tell me that they DID NOT agree with the psychometrist's findings and they were going to "strongly request" that she test him again. In the meantime, Jesse's homeroom teacher would make modifications to Jesse's IEP to try and make things a little easier for him. I was truly appreciative of their efforts, but more than a little confused that NOW, all of a sudden, Jesse's former teachers were jumping in line to say there's something wrong and that the county needs to serve him. Why hadn't they said this back when Jesse had been in their classrooms?! O well, at least they were trying to help.
The special education teacher told me that if I could get a diagnosis of Asperger's Syndrome from a medical doctor, then the county would have to offer services to Jesse. I immediately thought of a place in Chattanooga called "Team Evaluation". As its name indicates, it was a whole diagnostic team -- psychiatrist, physical therapist, occupational therapist, medical doctor, counselor -- that evaluated every aspect of the child before making a diagnosis. I had dealings with them when I worked for Fortwood Center before Jesse was born and I knew what a thorough job they did. I also knew, though, that they usually had a waiting list of six months to a year before you could get an appointment. Since time was of the essence, I opted to call a new guy in town, a developmental psychologist, for an appointment. They could see us right away, so I was relieved. Turned out to be a BIG mistake!
The research went on to say things are always black or white for kids with AS -- no gray areas. That so explained why Jesse would argue with you over and over about the same thing, even if you could prove to him irrevocably that he was wrong. AS kids perceive things differently and the way they perceive them is their "truth". I smiled through tears when I read that because it brought to mind a time when we were on vacation in North Carolina. We visited the Cherokee Reservation while we there. Michaelann and Kelly (Jan's daughter and Michaelann's best buddy) decided it would be fun to give all of us tribal nicknames. You know what they nicknamed Jesse? "Argues With Trees" (Benjamin, BTW, was "Squirming Dimple").
The school psychometrist came out and tested Jesse for a whole day and a half. Once finished, she called me in for a meeting. She said, "Yes, I believe Jesse probably has Asperger's, and yes, Jesse definitely has a learning disability, but it's not severe enough for us to offer him any special education services." She was basically telling me that because my child happened to be intelligent, the county wouldn't be serving him. Went home a little confused and disheartened. The next day, though, several of Jesse's teachers made a point to come into the library where I was volunteering and tell me that they DID NOT agree with the psychometrist's findings and they were going to "strongly request" that she test him again. In the meantime, Jesse's homeroom teacher would make modifications to Jesse's IEP to try and make things a little easier for him. I was truly appreciative of their efforts, but more than a little confused that NOW, all of a sudden, Jesse's former teachers were jumping in line to say there's something wrong and that the county needs to serve him. Why hadn't they said this back when Jesse had been in their classrooms?! O well, at least they were trying to help.
The special education teacher told me that if I could get a diagnosis of Asperger's Syndrome from a medical doctor, then the county would have to offer services to Jesse. I immediately thought of a place in Chattanooga called "Team Evaluation". As its name indicates, it was a whole diagnostic team -- psychiatrist, physical therapist, occupational therapist, medical doctor, counselor -- that evaluated every aspect of the child before making a diagnosis. I had dealings with them when I worked for Fortwood Center before Jesse was born and I knew what a thorough job they did. I also knew, though, that they usually had a waiting list of six months to a year before you could get an appointment. Since time was of the essence, I opted to call a new guy in town, a developmental psychologist, for an appointment. They could see us right away, so I was relieved. Turned out to be a BIG mistake!
Side Trip
After ten loooooong days in the hospital, they finally let Ken go home. Now the plan was to do another round of chemotherapy while Ken's body was recovering from the surgery. After that, we could look at the possibility of radiation at the place where Dr. Valle removed his stomach and attached his esophagus to his intestines. We went home and fell back into the routine of night-time tube feedings and trips to the chemo lab. These chemo treatments only lasted about two hours each, so that was better. It also didn't make Ken lose hair, so he started getting pretty fuzzy again. He eventually got all of his hair back, but it wasn't as pretty and curly as it had been before he got sick.
In reading back over many of these entries, It seems like we spent every waking minute fighting that terrible disease. And while it did take up the biggest majority of our lives, there were other things going on too. I guess one of the most important things we were dealing with, other than the cancer, had to do with Jesse. He was having a particularly hard time with his Dad being sick. He wouldn't talk to us about it, so it had begun manifesting itself physically. He had started complaining with frequent headaches and stomach aches. In fact, the day Ken and I were at the hospital trying to get his pre-op testing prior to the stomach resection, Jesse's school called and said he needed to come home because he had a severe headache. I remember my feelings of complete helplessness that day. I couldn't leave Ken--he had to have all of that testing done. I couldn't get in touch with any of Ken's family. I finally ended up calling Joan, our pastor's wife and she went and got Jesse and let him stay at her house until we got home from the hospital. That was one of many days that I felt like a failure as a mother. I was doing all I could to keep Ken healthy. My poor boys kept getting short-changed over and over again. I just never felt like I was "enough" for everybody.
Jesse was our first-born. He was the only, much loved, much petted child for four and a half years before Benjamin was born. But, oh, how he loved that little brother when he arrived. Jesse would tell people that Benjamin was "his baby". Started calling him "Bro" before Benjamin could even walk. It was a precious bond between them. As Jesse got old enough for school, we started noticing that he was having difficulty getting along and making friends. He had a disastrous kindergarten year, so we asked the school to let him have a "do-over". The next year in kindergarten was better, but Jesse still just never seemed to mesh with the other kids. He had few friends, was easily frustrated and had frequent angry outbursts. He was a completely different little guy at school than he was at home. We didn't know why things were suddenly so hard for Jesse.
Jesse's difficulties continued as he got older. School just NEVER seemed to get easier for him. Academically he did great. He was a great reader and had a precocious grasp of the English language. But social skills continued to plague him. He just didn't seem to "get" the group dynamic. His reactions to social situations were often inappropriate and his classmates begin to consider him "weird", and many of them began to shun him. It broke my heart, but any parent-teacher conferences we had usually left me more upset than I had been before I went. Teacher after teacher would simply say things like, "he's spoiled", or "he needs more limits"... always laying the reason for his difficulties squarely in our laps with no helpful suggestions and no offers of assistance. We just resigned ourselves that Jesse was "different", and consequently, would continue having a hard time in school.
Then, when Jesse was in fifth grade, about half-way through Ken's illness, a teacher FINALLY suggested that there might be something going on besides Jesse being an "ornery kid". She saw me in the hallway one day and asked me to stop by her room during her break. I went in, full of dread, wondering what Jesse had done now. She was very pleasant and said, "Mrs. Lunsford, I've been watching Jesse and I think that maybe he has Asperger's Syndrome". I blinked and said, "Okay, what's that?" She went on to explain that it was in the autism spectrum, but was on the high-functioning end. I was still trying to get past the word "autism" when she handed me an article from a magazine. My eyes fell on a list of characteristics of children with Asperger's Syndrome, and as I read, I found Jesse in those pages. It was as if the article had been written with Jesse in mind. I was STUNNED! There WAS a reason for the way Jesse behaved and it had a name!!!! The teacher asked if it would be alright for her to start the process to have Jesse tested by the school psychometrist so that a determination could be made as to special education services. I nodded, signed the release form, and headed to the car. I remember crying all the way home. I cried from sorrow that my child could have a real disability. I cried from relief that there really was something wrong, but it could be treated. None of it EVER had been Jesse's fault!
In reading back over many of these entries, It seems like we spent every waking minute fighting that terrible disease. And while it did take up the biggest majority of our lives, there were other things going on too. I guess one of the most important things we were dealing with, other than the cancer, had to do with Jesse. He was having a particularly hard time with his Dad being sick. He wouldn't talk to us about it, so it had begun manifesting itself physically. He had started complaining with frequent headaches and stomach aches. In fact, the day Ken and I were at the hospital trying to get his pre-op testing prior to the stomach resection, Jesse's school called and said he needed to come home because he had a severe headache. I remember my feelings of complete helplessness that day. I couldn't leave Ken--he had to have all of that testing done. I couldn't get in touch with any of Ken's family. I finally ended up calling Joan, our pastor's wife and she went and got Jesse and let him stay at her house until we got home from the hospital. That was one of many days that I felt like a failure as a mother. I was doing all I could to keep Ken healthy. My poor boys kept getting short-changed over and over again. I just never felt like I was "enough" for everybody.
Jesse was our first-born. He was the only, much loved, much petted child for four and a half years before Benjamin was born. But, oh, how he loved that little brother when he arrived. Jesse would tell people that Benjamin was "his baby". Started calling him "Bro" before Benjamin could even walk. It was a precious bond between them. As Jesse got old enough for school, we started noticing that he was having difficulty getting along and making friends. He had a disastrous kindergarten year, so we asked the school to let him have a "do-over". The next year in kindergarten was better, but Jesse still just never seemed to mesh with the other kids. He had few friends, was easily frustrated and had frequent angry outbursts. He was a completely different little guy at school than he was at home. We didn't know why things were suddenly so hard for Jesse.
Jesse's difficulties continued as he got older. School just NEVER seemed to get easier for him. Academically he did great. He was a great reader and had a precocious grasp of the English language. But social skills continued to plague him. He just didn't seem to "get" the group dynamic. His reactions to social situations were often inappropriate and his classmates begin to consider him "weird", and many of them began to shun him. It broke my heart, but any parent-teacher conferences we had usually left me more upset than I had been before I went. Teacher after teacher would simply say things like, "he's spoiled", or "he needs more limits"... always laying the reason for his difficulties squarely in our laps with no helpful suggestions and no offers of assistance. We just resigned ourselves that Jesse was "different", and consequently, would continue having a hard time in school.
Then, when Jesse was in fifth grade, about half-way through Ken's illness, a teacher FINALLY suggested that there might be something going on besides Jesse being an "ornery kid". She saw me in the hallway one day and asked me to stop by her room during her break. I went in, full of dread, wondering what Jesse had done now. She was very pleasant and said, "Mrs. Lunsford, I've been watching Jesse and I think that maybe he has Asperger's Syndrome". I blinked and said, "Okay, what's that?" She went on to explain that it was in the autism spectrum, but was on the high-functioning end. I was still trying to get past the word "autism" when she handed me an article from a magazine. My eyes fell on a list of characteristics of children with Asperger's Syndrome, and as I read, I found Jesse in those pages. It was as if the article had been written with Jesse in mind. I was STUNNED! There WAS a reason for the way Jesse behaved and it had a name!!!! The teacher asked if it would be alright for her to start the process to have Jesse tested by the school psychometrist so that a determination could be made as to special education services. I nodded, signed the release form, and headed to the car. I remember crying all the way home. I cried from sorrow that my child could have a real disability. I cried from relief that there really was something wrong, but it could be treated. None of it EVER had been Jesse's fault!
Trying to Un-Jumble
It’s funny what you remember, and don’t remember, during certain times in your life. The things I remember about Ken’s second hospital stay, after we moved to the oncology floor, are sporadic and strangely, some of the most vivid of the memories have nothing to do with Ken’s illness at all. For example. . . I remember going to buy a clock because the hospital room didn’t have one. I needed to pick up a few other things–and I needed to “get the heck outa Dodge” for a little while. Someone (though I can’t remember who) came and stayed with Ken so I could run a couple of errands. I guess I was gone about two or three hours. Ken would get upset if I was gone much longer than that.
Another “non-hospital” memory was a miraculous event. We had probably been in the hospital for the better part of a week when I heard on the news that Elizabeth Smart, the little girl who had been kidnapped from her home in Utah 9 months earlier, had been found ALIVE! I remember thanking God for restoring her to her family.
I remember a lot of other things during that ten-day hospital stay, but unfortunately, their order is all jumbled up. Anyway, here goes. . .
1. Ken slept more after I starting “helping” him get his pain meds. Every time I went close to his bed, I would push the button on the pain pump. And, whenever he had a visitor, I always told them to push the button too. He caught me at it once and got put out with me, but he needed to rest, and so did I.
2. We didn’t have nearly as many visitors during this hospitalization as we did during the first one. I guess people were busy or maybe didn’t want to disturb us.
3. I ate supper several times that week with my best friend, Jan. She was a nurse at Erlanger and did telephone triage on the pediatric floor. Whenever she was on duty, I would go upstairs and eat with her. She and her co-workers were so precious to let me hang out with them and talk, or cry, depending on how hard the day had been.
4. It took FOREVER to get the results back from the biopsies on Ken’s lymph nodes. I remember one night, after pestering the tar out of Dr. Valle’s office for a couple of days, he came by the hospital to see me after hours. I was either in the break room or up on Jan’s floor when he came. Instead of leaving me a message with the nurses, he WAITED on the oncology floor until I came back (we’re talking well after 9:00 p.m. by the time I got there). He said that the biopsy results were still not back, but he knew how concerned I was and wanted to talk to me in person. (Such a kind, compassionate man.) He also told me what I really already knew – that the surgery was not intended to “cure” Ken’s cancer. Rather, it was to buy him a little more time. I asked, “How much time?” He said, “Only God knows”.
5. Ken’s brother and his wife were visiting when Dr. Valle finally came by a day or so later with the biopsy results. He told us that no cancerous cells were found on any of Ken’s other organs, but that over half of the lymph nodes they biopsied were positive for cancer. Ken’s sister-in-law acted like it was the greatest news in the world, and I guess the part about it not being on Ken’s other organs was good news. But I remember being so puzzled at her reaction. She was a nurse – how could she think that positive lymph nodes were good news? If cancer was in the lymph system, it could go ANYWHERE!
I guess the worst memory while we were on the oncology floor is what my tortured mind would do whenever I tried to sleep. I don’t know if it was due to exhaustion from lack of sleep, or if God was helping me with hard decisions that would come later on down the road, but over and over and OVER, in my mind, I found myself planning Ken’s funeral. I knew what songs would be sung, that it would be at the church, not the mortuary, that Keith would preside, I even knew what kind of casket I would pick!!!!! I kept trying to get the thoughts out of my mind, but they would not leave me alone. And then I felt terrible for even having those thoughts in the first place. I was in such a dark, sad, lonely place. I’m glad God was there with me.
Another “non-hospital” memory was a miraculous event. We had probably been in the hospital for the better part of a week when I heard on the news that Elizabeth Smart, the little girl who had been kidnapped from her home in Utah 9 months earlier, had been found ALIVE! I remember thanking God for restoring her to her family.
I remember a lot of other things during that ten-day hospital stay, but unfortunately, their order is all jumbled up. Anyway, here goes. . .
1. Ken slept more after I starting “helping” him get his pain meds. Every time I went close to his bed, I would push the button on the pain pump. And, whenever he had a visitor, I always told them to push the button too. He caught me at it once and got put out with me, but he needed to rest, and so did I.
2. We didn’t have nearly as many visitors during this hospitalization as we did during the first one. I guess people were busy or maybe didn’t want to disturb us.
3. I ate supper several times that week with my best friend, Jan. She was a nurse at Erlanger and did telephone triage on the pediatric floor. Whenever she was on duty, I would go upstairs and eat with her. She and her co-workers were so precious to let me hang out with them and talk, or cry, depending on how hard the day had been.
4. It took FOREVER to get the results back from the biopsies on Ken’s lymph nodes. I remember one night, after pestering the tar out of Dr. Valle’s office for a couple of days, he came by the hospital to see me after hours. I was either in the break room or up on Jan’s floor when he came. Instead of leaving me a message with the nurses, he WAITED on the oncology floor until I came back (we’re talking well after 9:00 p.m. by the time I got there). He said that the biopsy results were still not back, but he knew how concerned I was and wanted to talk to me in person. (Such a kind, compassionate man.) He also told me what I really already knew – that the surgery was not intended to “cure” Ken’s cancer. Rather, it was to buy him a little more time. I asked, “How much time?” He said, “Only God knows”.
5. Ken’s brother and his wife were visiting when Dr. Valle finally came by a day or so later with the biopsy results. He told us that no cancerous cells were found on any of Ken’s other organs, but that over half of the lymph nodes they biopsied were positive for cancer. Ken’s sister-in-law acted like it was the greatest news in the world, and I guess the part about it not being on Ken’s other organs was good news. But I remember being so puzzled at her reaction. She was a nurse – how could she think that positive lymph nodes were good news? If cancer was in the lymph system, it could go ANYWHERE!
I guess the worst memory while we were on the oncology floor is what my tortured mind would do whenever I tried to sleep. I don’t know if it was due to exhaustion from lack of sleep, or if God was helping me with hard decisions that would come later on down the road, but over and over and OVER, in my mind, I found myself planning Ken’s funeral. I knew what songs would be sung, that it would be at the church, not the mortuary, that Keith would preside, I even knew what kind of casket I would pick!!!!! I kept trying to get the thoughts out of my mind, but they would not leave me alone. And then I felt terrible for even having those thoughts in the first place. I was in such a dark, sad, lonely place. I’m glad God was there with me.
Step-Down
The intern had spoken with me the next morning and told me that he was going to have Ken moved to the step-down unit. Thank goodness–that meant I could be with him in the room. He said they would call when they were ready to move him. Daddy had to get back home, so I spent the better part of the day alone, but that was okay. Sometimes it was a relief not to have to talk to anyone. Anyway, I waited, and waited, AND WAITED. Every time I called up to the unit, they said, “It will be just a few more minutes and they’ll have him moved. Well, that went on the better part of ALL DAY. Finally, Keith came to visit. It wasn’t visiting time, but since he was our pastor, they would let him go up in between times. He told me to come go up to the unit with him. We stopped at the desk to have the attendant call the unit and let them know we were coming up. They said, “Oh, we moved him already. Didn’t anyone call and let her know?” (GRRRRRRR!!!) The attendant gave me the room number and directions how to get there and I took off. (I don’t remember Keith going to the room with me. . . maybe he had to make a visiting session in another unit or something. I do know that he came by later on in the evening.)
After maneuvering the maze of hallways and making sure I got on the right elevator, I finally managed to find the step-down unit. The nurse at the desk told me where the room was. When I walked in the door, poor Ken was sitting up in the middle of the bed with the telephone in his lap, crying. When he saw me, he said, “Oh, thank God you’re here! I was trying to remember your phone number!” He said he had been up in the room for “a long time” and he couldn’t understand why I wasn’t coming. I don’t know how long he was actually up there before I found him, but to him, it was a long time and he felt abandoned once more. (GRRRRRR!!!! AGAIN!!!!!)
Anyway, he calmed down a little and I tried to convince him to try and get some rest. Unfortunately, that didn’t last very long. I don’t know if Ken was just still upset from being in the ICU, or if the meds they gave him were making him act up, or if it was just the results of the pain he was in (as usual, he was refusing to take anything for pain. They had him hooked up to a pain pump, but he would NOT push the button), but he was as ornery as I have EVER seen him. The room was long and narrow, so my chair was behind his bed. If he couldn’t see me, he was barking orders at me so that I’d have to jump up and come to the bed. He would not let me sit down for more than five minutes at a time. I was in tears by the time he finally dropped off to sleep. That only lasted about an hour and a half and he was awake and snarling at me again. One time he made a comment about me “not taking care of him like I should”. I whirrled around at him and hollered, “Oh really? Then who is that fat woman who has been running herself ragged ever since you got sick!!!!?” I know I shouldn’t have said it. . . it was so mean to talk that way to someone so sick. But I guess the fear and exhaustion had finally gotten the better of me. We apologized to each other, but that exchange between us still haunts me to this day.
Okay. . . finally out of ICU. Step-down had to be better, right? Well, not so much. First of all, most of the nurses absolutely and totally ignored us. The first one we had was wonderful. She was very attentive and compassionate. After she left, though, it was like we were in nowhere land. This was supposed to be a monitored bed, but they never hooked Ken up to any of the machines other than the little ET finger ( you know, the little clip they put on the end of your finger that glows red–reminded me of ET) that monitored his oxygen intake. His heart could have completely stopped beating and they would never have known it. I had to go out to the desk and almost pitch a screaming fit to get anyone to come and empty Ken’s catheter bag. It was so full that it was round like a basketball and on the verge of exploding and making a huge mess all over the floor. I had told them earlier that if they would just bring me a measuring cup, I could empty it, but they said, “Oh, no, we can’t let family members do that. We need to make sure it’s done correctly.” So instead of letting me take care of it, they let it get so full that they couldn’t get an accurate measurement anyway because it was pushing back up into the tube. (GRRRRRRRR!!!! ONE MORE TIME!)
Then, the guy who was supposed to be our nurse that night had the nerve to lie to me the next morning and say, “I checked in on y’all around 3:00 a.m., but you were both sleeping, so I didn’t want to bother you.” HUH?! First of all, Ken was in the hospital in what was supposed to be a monitored bed. It is the nurses' JOB to bother him to take vitals every four hours. Secondly, we didn’t sleep that night. And even if we had, I had become such a light sleeper since Ken got sick that I would have heard him if he had opened the door. He had NOT checked on us all night, I knew it, and I told him so. He kept insisting that he had, so I finally just said, “Whatever” and he left. It wasn’t long after that they called and said they had a bed ready for Ken on the oncology floor. That nurse ended up chasing us up the hallway trying to get all of his paperwork (that he should have done the night before) caught up.
All-in-all, I’d have to say that the whole ICU – Step-down experience was one big GRRRRRRR!!!!!! :(
After maneuvering the maze of hallways and making sure I got on the right elevator, I finally managed to find the step-down unit. The nurse at the desk told me where the room was. When I walked in the door, poor Ken was sitting up in the middle of the bed with the telephone in his lap, crying. When he saw me, he said, “Oh, thank God you’re here! I was trying to remember your phone number!” He said he had been up in the room for “a long time” and he couldn’t understand why I wasn’t coming. I don’t know how long he was actually up there before I found him, but to him, it was a long time and he felt abandoned once more. (GRRRRRR!!!! AGAIN!!!!!)
Anyway, he calmed down a little and I tried to convince him to try and get some rest. Unfortunately, that didn’t last very long. I don’t know if Ken was just still upset from being in the ICU, or if the meds they gave him were making him act up, or if it was just the results of the pain he was in (as usual, he was refusing to take anything for pain. They had him hooked up to a pain pump, but he would NOT push the button), but he was as ornery as I have EVER seen him. The room was long and narrow, so my chair was behind his bed. If he couldn’t see me, he was barking orders at me so that I’d have to jump up and come to the bed. He would not let me sit down for more than five minutes at a time. I was in tears by the time he finally dropped off to sleep. That only lasted about an hour and a half and he was awake and snarling at me again. One time he made a comment about me “not taking care of him like I should”. I whirrled around at him and hollered, “Oh really? Then who is that fat woman who has been running herself ragged ever since you got sick!!!!?” I know I shouldn’t have said it. . . it was so mean to talk that way to someone so sick. But I guess the fear and exhaustion had finally gotten the better of me. We apologized to each other, but that exchange between us still haunts me to this day.
Okay. . . finally out of ICU. Step-down had to be better, right? Well, not so much. First of all, most of the nurses absolutely and totally ignored us. The first one we had was wonderful. She was very attentive and compassionate. After she left, though, it was like we were in nowhere land. This was supposed to be a monitored bed, but they never hooked Ken up to any of the machines other than the little ET finger ( you know, the little clip they put on the end of your finger that glows red–reminded me of ET) that monitored his oxygen intake. His heart could have completely stopped beating and they would never have known it. I had to go out to the desk and almost pitch a screaming fit to get anyone to come and empty Ken’s catheter bag. It was so full that it was round like a basketball and on the verge of exploding and making a huge mess all over the floor. I had told them earlier that if they would just bring me a measuring cup, I could empty it, but they said, “Oh, no, we can’t let family members do that. We need to make sure it’s done correctly.” So instead of letting me take care of it, they let it get so full that they couldn’t get an accurate measurement anyway because it was pushing back up into the tube. (GRRRRRRRR!!!! ONE MORE TIME!)
Then, the guy who was supposed to be our nurse that night had the nerve to lie to me the next morning and say, “I checked in on y’all around 3:00 a.m., but you were both sleeping, so I didn’t want to bother you.” HUH?! First of all, Ken was in the hospital in what was supposed to be a monitored bed. It is the nurses' JOB to bother him to take vitals every four hours. Secondly, we didn’t sleep that night. And even if we had, I had become such a light sleeper since Ken got sick that I would have heard him if he had opened the door. He had NOT checked on us all night, I knew it, and I told him so. He kept insisting that he had, so I finally just said, “Whatever” and he left. It wasn’t long after that they called and said they had a bed ready for Ken on the oncology floor. That nurse ended up chasing us up the hallway trying to get all of his paperwork (that he should have done the night before) caught up.
All-in-all, I’d have to say that the whole ICU – Step-down experience was one big GRRRRRRR!!!!!! :(
Intensive Care -- Intensive Heartache
I need to back up just a little. . . after everyone left, but before Daddy and I tried to settle in for the night, ICU called and said that they FINALLY had Ken in a bed and I could come up and see him for just a minute. It took them so long to get him out of recovery and into an ICU bed, it was well past the final visiting session by the time they called.
Daddy and I went up to ICU. My heart jumped when I saw Ken. He was so pale and gaunt. . . he honestly didn’t look alive. I ran to the bed to make sure he was breathing. The nurse tried to wake him up, but he was still very heavily medicated, so he barely even opened his eyes. I looked down and saw that his hands were tied to the bed. I asked the nurse why he was restrained. She said that when he had begun coming to in the recovery room, he had yanked out his breathing tube and his NG tube. They tied his hands down to make sure he wouldn’t pull out any of the IVs.
Knowing how upset Ken always got whenever he thought I wasn’t there, I said, “When he wakes up and finds his hands tied down, he is going to be scared. Can I please stay with him until he wakes up?” “No”, the nurse said FIRMLY. I persisted. “Please let me stay. I promise I won’t be a bit of trouble. I don’t even need a chair. I’ll just sit down in the floor in the corner over there. He’s going to need me here when he wakes up.” “No”, she said again and went on to recite “hospital policy” to me – “we can’t make exceptions for one family or we’ll have to make exceptions for EVERYONE”. Yeah, yeah, yeah. . . I knew she was right, and I knew it made sense, but what I knew most is that I needed to stay with Ken. She showed no signs of relenting, so I kissed Ken’s bald little head, told him I loved him and that I would be just downstairs.
Daddy and I had been resting with the lights out for about 45 minutes when the ICU desk attendant stuck his head in the door and said, “Mrs. Lunsford? Your husband is awake and VERY agitated. They want you to come up to the unit and see if you can get him to calm down.” DUH!!!!!!! Hadn’t I just finished telling them this would happen? I took off running up to the unit.
I could hear Ken hollering when I got to the door. I ran in his room and he was wearing a look of sheer terror on his face. He was relieved to see me, but was so upset. I did my best to soothe him – held his hand, stroked his face, begged him to calm down. He was in such a state that it took about ten more minutes before I think he finally realized that he was okay. He kept saying, “Where were you? I couldn’t find you! They wouldn’t let me come find you!” It was SO heartbreaking – it reminded me of a child waking up out of a nightmare screaming for someone to come and rescue him. I kept on trying to comfort him until his breathing and heart rate went back down to normal. He asked me if I was going to stay with him. I looked at the nurse, who shook her head emphatically. I tried to sound cheerful as I said, with an aching heart, “No, Baby, I can’t stay with you in the ICU. But they are going to take really good care of you. And you’ll probably be asleep anyway. I’ll see you first thing in the morning.” Ken looked at me with the saddest eyes and said, “But I want you to stay.” He sounded so hurt and abandoned. I kissed him and said, “You sleep now. I love you and I’ll be back tomorrow morning.” He nodded his head, but I could tell he wasn’t convinced. I sobbed my way back to the waiting room.
Ken only stayed in ICU for a day and a half, but it was the worst day and a half of any he ever spent in the hospital. He was so agitated at me not being there, I think he was causing real problems for the nurses. Thankfully, he was doing well enough physically that one of the interns (I can’t remember if it was Dr. Schlabach’s intern or Dr. Valle’s) decided to go ahead and send him to the step-down unit. I tried to tell them they should have let me stay.
Daddy and I went up to ICU. My heart jumped when I saw Ken. He was so pale and gaunt. . . he honestly didn’t look alive. I ran to the bed to make sure he was breathing. The nurse tried to wake him up, but he was still very heavily medicated, so he barely even opened his eyes. I looked down and saw that his hands were tied to the bed. I asked the nurse why he was restrained. She said that when he had begun coming to in the recovery room, he had yanked out his breathing tube and his NG tube. They tied his hands down to make sure he wouldn’t pull out any of the IVs.
Knowing how upset Ken always got whenever he thought I wasn’t there, I said, “When he wakes up and finds his hands tied down, he is going to be scared. Can I please stay with him until he wakes up?” “No”, the nurse said FIRMLY. I persisted. “Please let me stay. I promise I won’t be a bit of trouble. I don’t even need a chair. I’ll just sit down in the floor in the corner over there. He’s going to need me here when he wakes up.” “No”, she said again and went on to recite “hospital policy” to me – “we can’t make exceptions for one family or we’ll have to make exceptions for EVERYONE”. Yeah, yeah, yeah. . . I knew she was right, and I knew it made sense, but what I knew most is that I needed to stay with Ken. She showed no signs of relenting, so I kissed Ken’s bald little head, told him I loved him and that I would be just downstairs.
Daddy and I had been resting with the lights out for about 45 minutes when the ICU desk attendant stuck his head in the door and said, “Mrs. Lunsford? Your husband is awake and VERY agitated. They want you to come up to the unit and see if you can get him to calm down.” DUH!!!!!!! Hadn’t I just finished telling them this would happen? I took off running up to the unit.
I could hear Ken hollering when I got to the door. I ran in his room and he was wearing a look of sheer terror on his face. He was relieved to see me, but was so upset. I did my best to soothe him – held his hand, stroked his face, begged him to calm down. He was in such a state that it took about ten more minutes before I think he finally realized that he was okay. He kept saying, “Where were you? I couldn’t find you! They wouldn’t let me come find you!” It was SO heartbreaking – it reminded me of a child waking up out of a nightmare screaming for someone to come and rescue him. I kept on trying to comfort him until his breathing and heart rate went back down to normal. He asked me if I was going to stay with him. I looked at the nurse, who shook her head emphatically. I tried to sound cheerful as I said, with an aching heart, “No, Baby, I can’t stay with you in the ICU. But they are going to take really good care of you. And you’ll probably be asleep anyway. I’ll see you first thing in the morning.” Ken looked at me with the saddest eyes and said, “But I want you to stay.” He sounded so hurt and abandoned. I kissed him and said, “You sleep now. I love you and I’ll be back tomorrow morning.” He nodded his head, but I could tell he wasn’t convinced. I sobbed my way back to the waiting room.
Ken only stayed in ICU for a day and a half, but it was the worst day and a half of any he ever spent in the hospital. He was so agitated at me not being there, I think he was causing real problems for the nurses. Thankfully, he was doing well enough physically that one of the interns (I can’t remember if it was Dr. Schlabach’s intern or Dr. Valle’s) decided to go ahead and send him to the step-down unit. I tried to tell them they should have let me stay.
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