First of all, nobody enjoys being sick, or even worse, watching their children be sick and having absolutely nothing you can do about it. Last week, one of the season's lovely stomach flu's reared its ugly head in our household. For a "normal" size family, this causes enough of a ruckus, but when you add a 6 person household to the equation, along with 2 parents that work/go to school full time, and a backup babysitter that lives with someone who's immune system is shot from chemotherapy and other "joys" of cancer, it is simply out of control!
This past week has been one hectic whirlwind to say the least! Late Wednesday night/early Thursday morning around 11pm, Drew woke up with excruciating stomach pain to the point where he was unable to lay still or get comfortable. About an hour l later he began vomiting with absolutely no relief in between each episode. He was very guarding of his stomach and would not let Dan get near him to touch it. Normally when Drew gets the flu, he will get sick, and then be fine/play until the next episode of vomiting and he repeats this pattern until he is better. About 1:30, Dan decided to take Drew to the ER and I called into work (not knowing if anyone else was going to get sick, or if I needed to take them to school, or if I would end up needing to go to the hospital to be with the boys). I later found out that Dan was even more nervous than I realized because Drew had complained of stomach pain a few times during the day on Wednesday to the point where he had to sit down and curl into a ball.
About 3:30, Dan sent me an update that Drew's white blood cell count was "really high" and that they were going to be doing a CT scan to rule out his appendix. Then, 1/2 hour later, he tells me they are EMS'ing them to Children's Hospital in St. Louis but doesn't tell me why right away. So, at 4am, I called my mom to come stay with the other kids while I quick got in the shower and was ready to leave by the time she arrived at 4:30am.
As I was leaving and driving to the hospital, I was able to get ahold of Dan who said they were just leaving on the ambulance and that the reason he had to go to Children's was because he was too young to scan at the current hospital (they have to be 6 years and 1 day, he's 5) and because they had to start an IV and bolus him with fluids since he was so dehydrated (his blood pressure had dropped pretty low). Luckily though, since they had the IV in place, they could give him some anti-nausea medicine through it which helped his vomiting tremendously. The previous dose they gave him under his tongue didn't do the trick. Dan also said that Drew all of a sudden said he was feeling better. Immediately, my radar went off and I was very nervous that his appendix had ruptured and that is what caused the pain to go away! So, I had the long drive to the hospital in the rain to think about it...
While we were at the ER at Children's, they ended up doing an X-ray to rule out intussusception (telescoping of his intestines) as well as an abdominal ultrasound to attempt to rule out his appendix. The X-ray came back normal, but the MD that came in to read the ultrasound while we were in there told us that it was abnormal in the fact that his intestines were extremely inflamed and filled with fluid; so much so that it was keeping them from being able to visualize his appendix. So, as far as appendicitis or a ruptured appendix, the exam was inconclusive. During our time at ultrasound, the docs switched shifts so when we came back, we had a new group of residents/hospitalists. They told us that because his intestines were so inflamed, it appeared he had a virus and that they were sending us home, but to continue to watch for signs that his appendix may have ruptured.
Exhausted, we left the ER to head home with absolutely no answers and many new worries. Ruptured appendices have run their course in Dan's family. Once we got home, I called our pediatrician to see if he would see Drew because I wasn't convinced and I was tired of worrying. I wanted my mind put at ease! I just kept thinking, "if it was a virus, someone else would have gotten sick by now. It's been 12 hours... and why did he have the pain on Wednesday?" At the pediatrician's office, Drew still had a low grade fever and was beginning to have some more stomach pain, but not as bad as before. The doctor was able to get a good assessment of his abdomen and informed us that he felt Drew might be severely constipated/impacted causing the pain with a virus on top of it leading to the temp and an elevated WBC count. He ordered 2 enemas and some miralax and told us to continue watching for an increased fever (over 101) and pain.
Fast forward to 4:30pm... Drew was napping and I noticed he was tossing and turning a lot and beginning to moan again. When I went to check on him, he felt very warm, so I woke him up to take his temp: 101.4... and now he says his stomach hurts more than before. We called my parents to come stay with the other kids while we took Drew back to the hospital and we called the pediatrician to let him know we were going back in. By the time the pediatrician called back and my parents arrived, Drew had fallen back asleep. We figured that his pain couldn't be too bad if he was able to sleep, so we decided to wake him back up in an hour and see where we were at. Meanwhile, my parents took the other three back to their house for a sleepover in case we did have to take Drew back in. When we woke Drew back up around 6pm, his temp was down and he said his tummy didn't hurt anymore and he could barely stay awake from being so exhausted after being up all night... nothing like a roller coaster! We made the decision to try and get some sleep while we could. We all slept in the living room that night (not enough room in our bed for both of us, my pregnant belly, and a sick 5 year old) so we could keep a close eye on him. Between Dan and I, we woke up every hour to check on Drew while he continued to sleep.
We made it to Friday, and were comforted when his appetite seemed to be returning when he woke up. He had some animal crackers as a test to see how his stomach would handle it and some eggs once we realized it could. As the day went on, however, he drank one cup of juice mixed with Miralax and didn't eat anything else. He was still very lethargic all day, but the miralax seemed to work where the enemas had not. That night, still nervous and overprotective, I had Drew sleep with me so I could keep a close eye on him through the night. He was out cold by 7:30pm, and me by 9pm. Around 11pm, I was so rudely awaken to Drew vomiting all over me and the bed. I quickly turned him off his back and then realized it was in my hair, the side of my face was so saturated that it was dripping off my ear, and my shirt was soaked. I yelled for Dan to come get Drew and the bed clean and I got in the shower. Seriously, almost 48 hours after the last time he threw up, he did it again with a ridiculous amount. No wonder he didn't want to eat most of the day! And now, the "close watch" begins again... I sat awake for 2 hours watching them sleep to make sure Drew wasn't going to get sick again... and then when he didn't, I went back to bed!
Drew slept with Dan the rest of the night and on Saturday morning I woke up feeling cruddy. Seeing as how I'm pregnant and have indigestion/reflux/nausea quite a bit still, I kept telling myself that was all it was and that I was being paranoid to think I was getting this "virus" that I swore the doctors weren't completely right about. Needless to say, I spent the entire day horribly nauseous and uncomfortable until around 5:45pm when I finally got sick. I felt better for about 10 minutes and then felt really nauseous again until the next morning when I woke up. Luckily though, I never did get sick again! I was so exhausted over night that I didn't realize Zach woke up around midnight and was vomiting... one by one we were being knocked down and out! He continued to get sick for about 13-14 hours. Not long after he was "done with the bucket", Kylie woke up from her nap whimpering. I knew she was next... 6pm... her start time.
Knowing that I had to work the next day (Monday), Dan said he'd take care of her over night despite the fact that he had just been up with Zach the night before. 5:15am when I woke up, she was still vomiting! Poor Dan, and to make matters worse, he was feeling really bad now. Down went casualty #5. I went to work with the hopes that since our census was low, I could come home early and help Dan out.... no such luck. Somehow, he made it through the day. Zach spent the day sleeping and recovering so he didn't go to school, and with worries that Heidi would get sick at school, she stayed home as well. My mom took Drew to and from school for Dan.
When I got home that night, I told Dan to go to bed and that I would take care of Heidi if she woke up vomiting, but that if she didn't, I wasn't keeping her home from school again. Midnight came around (our bewitching our apparently) and sure enough, Heidi was taken out! Poor girl was getting sick every 10 minutes for at least 2 1/2 hours and then I lost count... Tuesday came, I was off work, and was able to stay with Heidi. I was sure that by that evening, her fever would be gone and she would be able to go back to school on Wednesday. Nope! 6:30pm, Tuesday, her fever is 101.7 and not helped by motrin. I called to work to see where our census was at and warned them I might have to call in again if I couldn't get low censused. Dan missed school Monday and couldn't miss a weeks worth of those classes, so it was my turn to "take one for the team". At this point, I cannot ask my parents to watch the kids who can't be at school because my dad's immune system is shot, plus I wouldn't wish this horrible virus upon anyone! We are left to fend for ourselves.
Here we are, a week later from the initial stomach pains with Drew, and I'm home with Heidi after having to call in until 3pm when Dan will be home to switch over. We've spent the morning catching up on homework from the last 2 days and her temp is down, but she still gets worn out easily. The plus side to today... there isn't anyone else in our house that can possibly get this! I'd have to say that illnesses like this is the ONLY downside to having a big family.
Through all of this, I've realized things I took for granted previously. For instance, being a stay at home mom when a stomach bug tears through your family of 6 would be much easier than trying to have 2 parents work full time. My PTO that I've been saving up for after the baby is born is probably used up and I feel awful making that call saying I can't fulfill my job obligation. I hate feeling like I'm letting people down! Then, I try and put things back in perspective that no matter how horrible this stomach bug seemed, its nothing compared to brain cancer. My dad had an MRI on Monday and gets the results today to see if there has been any additional tumor growth. While I'm worrying about not being able to be at work, my mom and dad are worrying about something on a much bigger scale. So, I say a prayer and hope that if his tumor has grown again, we deal with the news gracefully.
Wednesday, November 9
Sunday, September 4
Labor Day Weekend and The Snowball Effect
Tonight I was switching over Kylie's clothes to the next size up like I've done many times before with all our children, one thought began snowballing into another (and thus this blog is created)...
1. Heidi was wearing the size 4/4T clothes I was pulling out for Kylie when Kylie was still a baby... and now my baby is big enough to wear them! Not only that, but I just made a size switch for her at the beginning of the summer. Really, that's all I get out of 3T's... one measly summer? Whatever happened to wearing a size for a good portion of the year? My "baby" isn't supposed to have growth spurts that often!
2. Heidi was wearing these clothes just before we moved to Illinois, just before she started Pre-K (the same grade that Drew, who was a fresh 2 years old at the time, just started)... have we really been here that long? When we moved here, our plan was to stay just long enough for both of us to finish school, and then move back to Nebraska... a time period we expected would take no more than 2 years at the longest. As we approach the Fall season, I realize it has almost been 3 years already! Three years later, despite MANY setbacks for us, I now hold 2 Bachelor's Degrees and am a practicing registered nurse and Dan is just 2 semesters away from graduating! What does this mean for us? Come Spring/Summer time next year, we will finally be making the move back "home"! And, three years later, after questioning our decision multiple times, we can truly understand the reason we actually came down here and see that God had a grander plan for us and the purpose in it all has finally unfolded to our eyes!
3. My "baby" boy, Drew, will be turning 5 tomorrow! Every year at Drew's birthday, I seem to have the same thought... "Wait, is he seriously just turning ___ (insert age here)? It seems like he's been ___ (insert previous age) for two years!" I'm not sure if it's because his birthday comes at the opposite time of year from the rest of my children (their birthdays are in Jan, soon to be Feb, Mar, and April) or if it's because he so dominantly has the "height" gene that the other kid's didn't get. Either way, I'm always amazed at him and the fact that he seems to fool me every year :-) Although, for my little goof ball, it's probably all part of his master plan! Dan and I decided to let him pick out his own birthday supplies this year... and in true Drew fashion, it's all mismatched and he loves it that way! Cars birthday cake plates and napkins, Scooby Doo cake/cupcakes, and a special request for a Curious George shirt to wear on his birthday! Should make for some interesting pictures at his party tomorrow, but that's the only way this anal retentive / perfectionist mom could imagine remembering the occasion :-)
4. Two years ago, this weekend, my uncle passed away from the same brain tumor my dad is currently fighting, and fighting extremely well at that! I'm so greatful of the time we were able to have with my Uncle after we moved here and before he passed. Without those months, my kids really wouldn't have gotten to know him; and now, they talk about the few memories that they do have often. I have the luxury of driving passed the cemetery where his burial site is located each and every day I go to work. I can see his plot from the road and say "good morning" and "good night" each time I pass. It's now been 5 months since my dad had his first seizure and was diagnosed with cancer. My family has adjusted and has learned to take each obstacle as it is given to us and to treasure the "down" time! Right now, we are in a "down" time... Dad finished his final radiation treatment at the beginning of August and has had a break from both it and chemotherapy since that time. Last week, he had a follow up MRI that showed NO NEW tumor growth!! By no means is he out of the woods at all, but for now, it's the best news we would imagine! He will be re-scanned every 2 months to follow the tumor's progress. In the mean time, he will begin his week long chemo (once a month) as maintenance therapy. The doctors say it will take about 6 months to see the cumulative effects of radiation and if after 1 year of this plan of chemotherapy the tumor remains controlled, he will get a break from treatment. That's right, the doctors are talking about a year from now!... to someone who has a terminal brain tumor where the average life span following diagnosis is just 2 years. You can imagine how elated my parents were and how they took this thought and ran with it! So, as we remember my Uncle this weekend, we remember the good times, and as we watch my dad fight, we rejoice in his "good" times!
And on that note, I'll have to continue this blog on another date! This once again pregnant momma is exhausted and needs to get to bed before yet another big day tomorrow!
1. Heidi was wearing the size 4/4T clothes I was pulling out for Kylie when Kylie was still a baby... and now my baby is big enough to wear them! Not only that, but I just made a size switch for her at the beginning of the summer. Really, that's all I get out of 3T's... one measly summer? Whatever happened to wearing a size for a good portion of the year? My "baby" isn't supposed to have growth spurts that often!
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| Heidi's wearing one of the dresses I just pulled out for Kylie in this picture! |
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| Heidi's 1st day of Pre-K |
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| Drew's 1st day of Pre-K |
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| A seemingly thrilled Heidi and Zach meet their new baby brother at the hospital |
4. Two years ago, this weekend, my uncle passed away from the same brain tumor my dad is currently fighting, and fighting extremely well at that! I'm so greatful of the time we were able to have with my Uncle after we moved here and before he passed. Without those months, my kids really wouldn't have gotten to know him; and now, they talk about the few memories that they do have often. I have the luxury of driving passed the cemetery where his burial site is located each and every day I go to work. I can see his plot from the road and say "good morning" and "good night" each time I pass. It's now been 5 months since my dad had his first seizure and was diagnosed with cancer. My family has adjusted and has learned to take each obstacle as it is given to us and to treasure the "down" time! Right now, we are in a "down" time... Dad finished his final radiation treatment at the beginning of August and has had a break from both it and chemotherapy since that time. Last week, he had a follow up MRI that showed NO NEW tumor growth!! By no means is he out of the woods at all, but for now, it's the best news we would imagine! He will be re-scanned every 2 months to follow the tumor's progress. In the mean time, he will begin his week long chemo (once a month) as maintenance therapy. The doctors say it will take about 6 months to see the cumulative effects of radiation and if after 1 year of this plan of chemotherapy the tumor remains controlled, he will get a break from treatment. That's right, the doctors are talking about a year from now!... to someone who has a terminal brain tumor where the average life span following diagnosis is just 2 years. You can imagine how elated my parents were and how they took this thought and ran with it! So, as we remember my Uncle this weekend, we remember the good times, and as we watch my dad fight, we rejoice in his "good" times!
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| the older three with my Uncle approx 6 months after his diagnosis (June 08) |
Monday, June 13
Bump in the Road?
Last week (week 3 of chemo/radiation) my dad started to experience more deficits once again and additional weakness that he hadn't experienced since he came home from the hospital after his surgery. The biggest differences physically were that his balance was way off and his hair was beginning to fall out where the radiation was being aimed. The symptoms of balance were attributed to additional swelling from radiation and his steroids were upped back to a level he had previously been at.
On Thursday evening, my mom noticed some drainage coming from the incision site. I advised her to wait until morning and then call the Siteman Cancer Center (where he gets his treatment) and ask them whether he should go for radiation or go to the emergency room. Siteman had them come in for treatment and while he was there, his radiation oncologist called Dr. Sprick (the neurosurgeon who did dad's initial surgery) to tell him Dad needed to be seen that same day. Once treatment was done, I met my parents at Dr. Sprick's office. He was in surgery, so they sent us for a CT scan of the head and some blood work. Then it was back to Dr. Sprick's office to wait until he was out of surgery.
The CT scan showed what Dr. Sprick expected... additional swelling caused by the radiation, but no clear abscess (pocket of infection). In a way, that was a good thing; but at the same time, now we were left without a clear answer as to what was causing this drainage that obviously looked like infection.
Ultimately, it was decided to "wait on it" for a week. They cultured the drainage, and my dad was to see an infectious disease doctor sometime this week (who happens to live across the street from my mom and dad) and based on this doctor's recommendation, they would proceed forward with treatment. Treatment being antibiotics directed at the specific infection that may be present. Dr. Sprick did not want to compound dad's therapy even more if it was ultimately unnecessary. My dad would also be rescanned and have additional blood work done in one week. They are attempting to determine whether this is in fact an infection (whether it is already present or just beginning), or whether it is byproducts of radiation necrosis. Dr. Sprick also gave strict instructions for my dad to go to the ER if he got progressively worse over the weekend (to include fever (which may be masked by the steroids), chills, nausea/vomiting, or increased headaches).
This morning (Monday) when my dad was getting ready prior to leaving for his radiation appointment, he fell in the shower and was unable to get down the stairs. My mom called Dan to help get him ready and downstairs so Dan headed straight over to their house. I called my mom to see what was going on, and she was trying to determine whether she should take him to radiation or to the ER as Dr. Sprick had mentioned. I advised her to call the Siteman Center and follow their advise since they were the ones who sent them back to Dr. Sprick in the first place. After talking with the nurse from Siteman, it was decided that my dad would go to the ER over at Barnes in St. Louis (one of the hospitals associated with the Siteman Center).
So, now we wait. Dan is driving them to the hospital and then coming home, and then we will go pick them up later this afternoon once everything is finished. My mom was just worried that she wouldn't be able to get my dad out of the car and into a wheelchair on her own. I'll write an update when we know if anything has changed from last week or what exactly is going on. Right now, we just want to make sure there isn't anything else in addition to the wear and tear that radiation and chemo put a body through.
On Thursday evening, my mom noticed some drainage coming from the incision site. I advised her to wait until morning and then call the Siteman Cancer Center (where he gets his treatment) and ask them whether he should go for radiation or go to the emergency room. Siteman had them come in for treatment and while he was there, his radiation oncologist called Dr. Sprick (the neurosurgeon who did dad's initial surgery) to tell him Dad needed to be seen that same day. Once treatment was done, I met my parents at Dr. Sprick's office. He was in surgery, so they sent us for a CT scan of the head and some blood work. Then it was back to Dr. Sprick's office to wait until he was out of surgery.
The CT scan showed what Dr. Sprick expected... additional swelling caused by the radiation, but no clear abscess (pocket of infection). In a way, that was a good thing; but at the same time, now we were left without a clear answer as to what was causing this drainage that obviously looked like infection.
Ultimately, it was decided to "wait on it" for a week. They cultured the drainage, and my dad was to see an infectious disease doctor sometime this week (who happens to live across the street from my mom and dad) and based on this doctor's recommendation, they would proceed forward with treatment. Treatment being antibiotics directed at the specific infection that may be present. Dr. Sprick did not want to compound dad's therapy even more if it was ultimately unnecessary. My dad would also be rescanned and have additional blood work done in one week. They are attempting to determine whether this is in fact an infection (whether it is already present or just beginning), or whether it is byproducts of radiation necrosis. Dr. Sprick also gave strict instructions for my dad to go to the ER if he got progressively worse over the weekend (to include fever (which may be masked by the steroids), chills, nausea/vomiting, or increased headaches).
This morning (Monday) when my dad was getting ready prior to leaving for his radiation appointment, he fell in the shower and was unable to get down the stairs. My mom called Dan to help get him ready and downstairs so Dan headed straight over to their house. I called my mom to see what was going on, and she was trying to determine whether she should take him to radiation or to the ER as Dr. Sprick had mentioned. I advised her to call the Siteman Center and follow their advise since they were the ones who sent them back to Dr. Sprick in the first place. After talking with the nurse from Siteman, it was decided that my dad would go to the ER over at Barnes in St. Louis (one of the hospitals associated with the Siteman Center).
So, now we wait. Dan is driving them to the hospital and then coming home, and then we will go pick them up later this afternoon once everything is finished. My mom was just worried that she wouldn't be able to get my dad out of the car and into a wheelchair on her own. I'll write an update when we know if anything has changed from last week or what exactly is going on. Right now, we just want to make sure there isn't anything else in addition to the wear and tear that radiation and chemo put a body through.
Sunday, June 5
Life as we know it...
We are now two weeks into chemo and radiation and it is becoming quite the routine for my mom and dad. Don't get me wrong, it's a routine that they won't miss once this first 6 weeks is over. Daily drives to St. Louis from Monday through Friday tend to wear them both out; BIG TIME! I've gone with them each Friday so far just to help mix things up from the monotony.
This last week, my dad asked if I was able to go back with him and watch his radiation. Surprisingly, they said yes! I went in the room with him and watched him lay on the table and put his mask on and have it hooked underneath the table. I was overwhelmed with emotion and empathy for him when they were securing it. I can only imagine what he feels during the whole thing, and totally understand why he takes a Xanax beforehand!
Once he was all set up, we went out of the room and I stayed at the desk and watched the treatment with the people who "do" it. There are two cameras so they can see him from two different angles, and a speaker as well, so if he needed to talk, they would hear him. There are about 8 or 10 pre-set coordinates that he receives the radiation at. The machine starts out underneath his head, and moves around in a half circle until the last coordinate when the machine is straight over his face. I was expecting a "light show", considering that my Uncle and my Dad have both described their treatment as such. When I asked the people about it (since I wasn't seeing any lights), they told me that a lot of people say that. Their best guess is that the radiation triggers some area in the brain and makes them think they see all sorts of colors.
All together, from start to finish, the actual radiation treatment only takes 6-7 minutes. You can imagine how long the drive seems to be at the actual facility for such a short time. One or two days each week, he has an appointment with the oncologist or the radiation oncologist as well. Luckily, those times are close to when his radiation is scheduled. The most recent appointment with his oncologist provided some new information for us. Apparently, at Duke, there is currently a study being done having to do with glioblastoma multiformes and genetic links. My dad's doctor knows the individuals doing the study and was going to let them know of this case with two brothers to see if they are interested in using any information for their study, or if they have any information that may be valuable to my dad's case. We shall wait and see what that brings!
We also received the MRI report from the MRI my dad had just prior to radiation (2 1/2 weeks ago). It stated that although the gross portion of the tumor was removed, there is still some residual present. The gliadel wafers the neurosurgeon put in are still in place as well. The other thing that stuck out to me in the report is that there is a significant blood supply to the area. The reason this tumor is so difficult to "cure" is because it has the ability to create it's own blood supply in order to survive. There was also a slight midline shift in the brain caused from swelling at the time. The good news related to that, is that they have since begun the process of tapering the steroids (which I mentioned last time) which indicates that the swelling is not as much of a fear at this point.
His next MRI will not be until the 6 weeks of radiation are complete. At that point, we will be able to see the results of the radiation by comparing it to the pre-treatment scan. One radiation is done, his chemo will continue at a higher dose. As far as we know, the chemo will continue for the remainder of the time he is fighting the tumor.
As for how my dad is doing, he is holding up well. His main struggle is not trying to do too much and eating the right thing. Certain things do not mesh well with his chemo and when he doesn't take the time to rest and let his body recoup, he feels it. If he listens to his body, he isn't having too much trouble with the treatment at this point. Two weeks down, four to go!!
This last week, my dad asked if I was able to go back with him and watch his radiation. Surprisingly, they said yes! I went in the room with him and watched him lay on the table and put his mask on and have it hooked underneath the table. I was overwhelmed with emotion and empathy for him when they were securing it. I can only imagine what he feels during the whole thing, and totally understand why he takes a Xanax beforehand!
Once he was all set up, we went out of the room and I stayed at the desk and watched the treatment with the people who "do" it. There are two cameras so they can see him from two different angles, and a speaker as well, so if he needed to talk, they would hear him. There are about 8 or 10 pre-set coordinates that he receives the radiation at. The machine starts out underneath his head, and moves around in a half circle until the last coordinate when the machine is straight over his face. I was expecting a "light show", considering that my Uncle and my Dad have both described their treatment as such. When I asked the people about it (since I wasn't seeing any lights), they told me that a lot of people say that. Their best guess is that the radiation triggers some area in the brain and makes them think they see all sorts of colors.
All together, from start to finish, the actual radiation treatment only takes 6-7 minutes. You can imagine how long the drive seems to be at the actual facility for such a short time. One or two days each week, he has an appointment with the oncologist or the radiation oncologist as well. Luckily, those times are close to when his radiation is scheduled. The most recent appointment with his oncologist provided some new information for us. Apparently, at Duke, there is currently a study being done having to do with glioblastoma multiformes and genetic links. My dad's doctor knows the individuals doing the study and was going to let them know of this case with two brothers to see if they are interested in using any information for their study, or if they have any information that may be valuable to my dad's case. We shall wait and see what that brings!
We also received the MRI report from the MRI my dad had just prior to radiation (2 1/2 weeks ago). It stated that although the gross portion of the tumor was removed, there is still some residual present. The gliadel wafers the neurosurgeon put in are still in place as well. The other thing that stuck out to me in the report is that there is a significant blood supply to the area. The reason this tumor is so difficult to "cure" is because it has the ability to create it's own blood supply in order to survive. There was also a slight midline shift in the brain caused from swelling at the time. The good news related to that, is that they have since begun the process of tapering the steroids (which I mentioned last time) which indicates that the swelling is not as much of a fear at this point.
His next MRI will not be until the 6 weeks of radiation are complete. At that point, we will be able to see the results of the radiation by comparing it to the pre-treatment scan. One radiation is done, his chemo will continue at a higher dose. As far as we know, the chemo will continue for the remainder of the time he is fighting the tumor.
As for how my dad is doing, he is holding up well. His main struggle is not trying to do too much and eating the right thing. Certain things do not mesh well with his chemo and when he doesn't take the time to rest and let his body recoup, he feels it. If he listens to his body, he isn't having too much trouble with the treatment at this point. Two weeks down, four to go!!
Thursday, May 19
The Next Phase
So, Monday is the big day... my dad starts treatment for the cancer. Both radiation and chemo start on the same day. He will have radiation Monday through Friday for 6 weeks and take his chemo 7 days a week at the same time.
About 2 weeks ago, I went with my mom and dad for his appointment to get his radiation mask fitted. This was very anxiety provoking for my dad and he became extremely claustrophobic during the procedure. Thankfully, they cut the eyes and mouth out of the mask to help him feel like he could see and breathe. He also has anti-anxiety pills he can take prior to the radiation to help calm his nerves. I'm hoping, for his sake, that he begins to "get used to" wearing it so that the 6 weeks of treatment can pass as quickly as possible for him. He will be on a lower dose of a pill form of chemotherapy throughout the duration of the radiation, and once it is complete, he will only be taking the chemo pill, but at a higher dose.
Please keep him in your thoughts and/or prayers during this time. He is doing much better at this point than he was the week of diagnosis. Not only because he is recovering from his surgery well, but because his attitude mentally has changed. He has come to terms with what he is facing and has made the choice to do what he can to fight back.
I even signed him up as a "survivor" (anyone who has heard the diagnosis 'you have cancer') for an upcoming Relay For Life event in Belleville in mid-July. They have a special dinner and event before the big relay starts and he will get a t-shirt. My mom has a survivor t-shirt from the Relay event I did at SIUE while in nursing school, and my dad has been "admiring" it ever since his diagnosis. So, now, he will be able to have his own.
If you would like to donate to the American Cancer Society on his behalf, please visit his personal fund raising page for the event. I need to have him personalize the page still, but here is the link:
http://main.acsevents.org/site/TR/RelayForLife/RFLFY11IL?px=21287049&pg=personal&fr_id=30534
When my dad came home from the hospital, we set up a bed in their living room for him until he was able to go up and down stairs safely again. And, yep, this past week Dan helped put the bed away and move the furniture back to normal. I'm so proud of my dad and the effort he is putting forth toward his recovery. The only other change is his anti-seizure medicine. He was initially put on Dilantin, but when he had his blood work done, he was below the therapeutic level so now he is on Dilantin in addition to Keppra (both are anti-seizure meds). Either way, he has remained seizure free since the three he had on Easter Sunday.
That is all the latest news as of right now. I'll keep updating when there are more things to say :-)
About 2 weeks ago, I went with my mom and dad for his appointment to get his radiation mask fitted. This was very anxiety provoking for my dad and he became extremely claustrophobic during the procedure. Thankfully, they cut the eyes and mouth out of the mask to help him feel like he could see and breathe. He also has anti-anxiety pills he can take prior to the radiation to help calm his nerves. I'm hoping, for his sake, that he begins to "get used to" wearing it so that the 6 weeks of treatment can pass as quickly as possible for him. He will be on a lower dose of a pill form of chemotherapy throughout the duration of the radiation, and once it is complete, he will only be taking the chemo pill, but at a higher dose.
Please keep him in your thoughts and/or prayers during this time. He is doing much better at this point than he was the week of diagnosis. Not only because he is recovering from his surgery well, but because his attitude mentally has changed. He has come to terms with what he is facing and has made the choice to do what he can to fight back.
I even signed him up as a "survivor" (anyone who has heard the diagnosis 'you have cancer') for an upcoming Relay For Life event in Belleville in mid-July. They have a special dinner and event before the big relay starts and he will get a t-shirt. My mom has a survivor t-shirt from the Relay event I did at SIUE while in nursing school, and my dad has been "admiring" it ever since his diagnosis. So, now, he will be able to have his own.
If you would like to donate to the American Cancer Society on his behalf, please visit his personal fund raising page for the event. I need to have him personalize the page still, but here is the link:
http://main.acsevents.org/site/TR/RelayForLife/RFLFY11IL?px=21287049&pg=personal&fr_id=30534
When my dad came home from the hospital, we set up a bed in their living room for him until he was able to go up and down stairs safely again. And, yep, this past week Dan helped put the bed away and move the furniture back to normal. I'm so proud of my dad and the effort he is putting forth toward his recovery. The only other change is his anti-seizure medicine. He was initially put on Dilantin, but when he had his blood work done, he was below the therapeutic level so now he is on Dilantin in addition to Keppra (both are anti-seizure meds). Either way, he has remained seizure free since the three he had on Easter Sunday.
That is all the latest news as of right now. I'll keep updating when there are more things to say :-)
Friday, April 29
CANCER SUCKS.
A friend of mine has a button hanging from the rear-view mirror in their car that simply states "Cancer Sucks"... and right now, those words best sum up my feelings. This last week has been the most horrific week of my life in so many different ways, yet I am still standing strong at the end of it and am ready to move forward. Here is a re-cap of the weeks events....
Easter Sunday, April 24
I am in Nebraska celebrating Easter with Dan's family when I receive a phone call from my mom that my dad was in the emergency room. She proceeds to tell me the story that earned him such a trip.... Mom, Dad, and my Grandma (not my grandpa because he is still in a nursing home recovering and rehabing from 4 broken ribs) went out to eat lunch for the holiday. After dropping my Grandma off at home, he and my mom went back to their house. Dad told Mom he wasn't feeling well and was going upstairs to use the restroom. The next thing my mom knew, she heard some thuds upstairs like someone was tumbling. She called my dad's name and when he didn't respond, she started to go up the stairs. On her way up, she heard more banging sounds and by the time she got to their bathroom, my dad was face down on the bathroom floor, blue, and bleeding and slightly foaming at the mouth (initially all she told me was face down and blue). She called 911 and they took him to Memorial Hospital in Belleville (the closest hospital to their house). During her call to me, I could hear my dad in the background and he was talking just fine and didn't sound out of it at all. She told me his blood work was normal and his EKG was fine. So, at this point, I wasn't too terribly worried... mostly concerned and anxious for updates.
The next step was a CT scan of his head and face. While they were waiting for that to be done and then waiting for the results, some of the updates my mom was sending me started to worry me. Dan and I had plans to drive home the next morning initially, but after these updates we made the decision to drive home that night. About a minute after we made that decision, I get another text from my mom and this one says... "Well, the Dr. just came in and said there is a mass in the brain". Needless to say, that was extremely difficult to hear and Dan's family was amazing with all of their support. They helped us get packed up in a hurry so we could get on the road. We started our 7 hour drive about 8pm.
45 minutes into our drive, all four kids are asleep and our van proceeds to break down. The belt that runs everything snapped off. So, Dan calls his parents who were nice enough to call around and find us a vehicle big enough for our family to use to drive back to Illinois (THANK YOU MITCH AND KATHY). By the time they find the vehicle, go pick it up, and drive to where we were, it was about 11pm. We got the everyone and everything switched to the new van and off we were once again. By now, my mom lets me know my dad is being admitted to the ICU, not a regular floor; and that he had two more tonic clonic (grand mal) seizures during his time in the ER and that the initial episode at home was the same thing.
Dan drove the majority of the drive, but around 4am I convinced him to let me drive since I was able to get at least some sleep. We got back to Belleville around 6am, I showered and headed straight up to the hospital to relieve my dad's buddy who had stayed with him all night so my mom could go home and try and get some rest.
Monday, April 25
Dad goes down for an MRI in the morning and it shows a 4cm mass in which the oncologist decided needed to be biopsied. We met the neurosurgeon who was going to do the surgery as well as the neurologist assigned to his case. The biopsy was scheduled for Tuesday around noon. Most of today was spent "fighting" with my dad so that he wouldn't get up out of bed or try to pull his foley catheter out. He was so combative the night before that they had to put him in restraints; and he spent most of that night trying to convince his buddy to get some scissors and cut him out of everything. Obviously, the body that was in front of me seemed to have swallow my dad whole. He was "in there" but buried really deep.
Around 7:00 or so this night, the neurologist pulled my mom and I out in the hall and was very up front with us. He told us that it was a "large tumor" and that it "didn't look pretty". As soon as my mom heard those words, she grabbed her chest and knowing that in times of stress she has a history of flipping into A-fib (abnormal heart rhythm), I quickly told the doctor her history. He went to call her cardiologist who said that she needed to be seen first thing in the morning. Meanwhile, I get my dad's nurse and ask her to get a portable pulse ox and heart rate monitor and check out my mom to see if she in fact flipped or if it was an anxiety attack. Luckily, it was anxiety and my mom had medicine she could take. But, for about 30 minutes I was running in between my dad's room and the waiting room checking on them both.
I got home from the hospital that night about 1030pm, was still working on getting in contact with my brother to find out his travel arrangements for the following day and chatted with Dan about how we were going to get him and his family picked up from the airport. My plan was to head back to the hospital in the morning by 7 to relieve another one of his buddies that was staying the night that night..... That was a LONG DAY!
Tuesday, April 26
Biopsy/surgery day... Got to the hospital at 7, my Aunt arrived with my mom (she came in to town from Florida to stay with my mom and help out) around 830ish. My dad had already gone down for his pre-surgical "mapping" MRI to help guide the surgery that afternoon. Once my dad got back from the MRI, my Aunt stayed with my dad so that I could take my mom over to her cardiologists office on the other side of the hospital. For a somewhat impromptu visit, they got her in pretty quickly to be seen which was helpful so we could get back to the ICU before they took dad down for surgery.
Before the appointment, I was stern with my mom and told her that she couldn't keep any symptoms that she has had in the past month from her doctor the way she attempts to keep them from me, although they always have a way of getting out. End result of her appointment: blood work and holter monitor for 3 weeks, along with a follow up appt in 2 weeks while her monitor is still on. This monitor's purpose is to record what her heart is doing 24 hours a day and alert the doctor's office any time she switches over to A-fib. The monitor put me at ease because it was one less thing I would worry about and let her doctor take care of... she couldn't have symptoms and try to hide them.
Dad went down around to the OR around 1130 and the waiting game began. About 230pm we got our first phone call as far as the progress of the surgery. They had just gotten to the brain and were ready to remove the tumor; and told us we should have another call in about 45 minutes or so. An hour and 15 minutes later, we got the call that they were closing him up and that the surgeon would be ready to come out and speak with us shortly. The surgeon informed us that he believed he got the whole tumor out (or gross portion of it that was visible as we learned Friday). Next step, more waiting for at least 48 hours for the pathology report to come in.
Dad came back to the ICU from surgery around 530pm and seemed to be doing great. They warned us that he may still be intubated from surgery because with surgery on the brain they let anesthesia wear off on its own rather than reverse it when surgery is finished. This is to help reduce the pressure inside his head which can cause many other undesirable problems. However, he was recovering quite nicely and was no longer intubated when he came back to the room. Physically he was doing very well and was not experiencing any neurological deficits from surgery, but the effects of the meds and his anesthesia wearing off caused us to "fight" again. He really wanted to get out of bed and insisted on stretching his arterial line to the limits (which could cause a HUGE bloody mess if he would have ripped it out). He was just extremely agitated.
It was about 10pm when another buddy came to take over the night shift to sit with my dad that night. I headed home and chatted with Dan for about an hour before he had to leave to pick up my brother and his family at the airport. Their flight was scheduled to get in at midnight, but didn't end up arriving till just after 1am. By the time he dropped them off at my parents and came back home it was 3am. What my husband won't do for me and my family! That's why I love him so much :-).... Another LONG day!
Wednesday, April 27
What I like to call our "down day". This day was mostly spent waiting and watching my dad become more alert by the hour, which was awesome to see. He was becoming "my dad" again, but was also starting to process just what was happening to him. He got his arterial line, foley, and fluids discontinued this day which made him EXTREMELY happy! By the end of the day (around 7pm) he was transferred out of the ICU and to the telemetry floor. I went home about 930pm this day because my brother volunteered to stay with my dad overnight.
Thursday, April 28
Results day... Lots of visitors were in and out all day which helped pass the time for my family, but for my dad it caused a lot of chaos in his head which was already running circles trying to take everything in. The toughest part of the day until about 6pm was seeing my dad so down and vulnerable and not being able to do anything to make it better. For someone who I've always seen as so strong, he is struggling with maintaining that and letting himself feel what he is feeling.
As I posted on facebook, we received the results this evening. Turns out, this tumor is the EXACT same type of cancer that my Uncle (dad's brother) was diagnosed with in Jan. 2008; stage 4 glioblastoma multiforme... the worst type of brain tumor you can have. The difference between the two brothers is this: location of the tumor, neurological deficits at time of diagnosis (my uncle was already experiencing some paralyzation on one side of body), my dad had insertion of chemotherapy "wafers" into the bed of the old tumor site during surgery which will dissolve and deliver local chemo for about 90 days, and my dad's was operable, whereas my uncles was inoperable because of it's location. What does all of this mean for my dad's prognosis? We would have to wait until the next day... REALLY? Yep, let our minds wonder all night...
Also today, we got our van back! YAY... NOT! It will be getting traded in as soon as we have the chance to go look for a new vehicle. Thank you so much to Dan's parents for driving it all the way here, picking up our two youngest children, and turning right around and driving back to Nebraska. Thank you also to his sister, Leisa, for offering to take our children under her wing for a bit so we are able to concentrate on other responsibilities such as work and school!
Friday, April 29
Q & A day! (and as everyone is talking about today; the royal wedding day which has definitely not been as front and central with our thinking). Early in the morning, about 630am, my dad was transferred to the oncology floor because he no longer needed the telemetry monitoring.
In a nutshell, here is what we found out today. Textbooks say that with treatment (surgery, radiation, and chemotherapy) all we are going to do is "slow the train down, not stop it" and that the prognosis is extremely poor. Having said that, reality has shown that it IS beatable. The oncologist we spoke with today said that he has a patient who had this type of tumor, took the chemo that my dad will be put on next for four years before stopping taking it. After that time, she has been tumor free for 1 year. So, though it is not likely, nor are the odds in our favor, the chance is there and allows us to have some hope... at least until we see how my dad's tumor is going to respond to the treatment.
We made the decision and have gotten the ball rolling to switch his treatment (which should start within 2 weeks) over to the Siteman Cancer Center in St. Louis. He is going to be seen by the same doctors who treated my Uncle. EVERY SINGLE doctor that has seen us is totally baffled and intrigued that two brothers have gotten the exact same type of brain tumor (and in such a close time frame). We now know that my dad probably had this tumor growing when my uncle was still living. He even asked his brother's doctors if this was familial, and should he be concerned about it? They all said that it was so rare, that he didn't need to worry. I think there was only record of it ever occurring just ONCE before. So, I guess that makes my family #2. We are hoping that by having my dad treated by the same people, that maybe some research will be able to be done and possibly help discover something that up till now is previously unknown. As of now, doctor's do not know what causes this type of tumor, nor does the "best" known treatment regimen give that grand of a prognosis.
Late this afternoon, we learned there would be a possibility that dad would be able to be discharged today or tomorrow. When we heard this, Dan and I went to my parents house and did some rearranging and set up a bed downstairs and added a hand rail to his outside steps to make it easier on him to get around until he regains all his strength. Obviously, since I am staying at the hospital with my dad tonight, he didn't come home today, so we are hoping tomorrow is the big day!
Sunday is my nephew's 1st birthday. Now that they are in town, we will be able to celebrate his birthday here. We need something to celebrate right now!
Monday I will go back to work and will begin to get used to my new altered life as a daughter who has a father with cancer. I have been my families rock up to this point and I know that I can keep it going because of the amazing support system I have. So, thank you again to everyone for all of their generosity and help with taking some of the burden with the small stuff so that I could be with my family at such a trying time... Continued prayers that my family is able to handle whatever is dealt to us during this journey with grace are greatly appreciated!
Easter Sunday, April 24
I am in Nebraska celebrating Easter with Dan's family when I receive a phone call from my mom that my dad was in the emergency room. She proceeds to tell me the story that earned him such a trip.... Mom, Dad, and my Grandma (not my grandpa because he is still in a nursing home recovering and rehabing from 4 broken ribs) went out to eat lunch for the holiday. After dropping my Grandma off at home, he and my mom went back to their house. Dad told Mom he wasn't feeling well and was going upstairs to use the restroom. The next thing my mom knew, she heard some thuds upstairs like someone was tumbling. She called my dad's name and when he didn't respond, she started to go up the stairs. On her way up, she heard more banging sounds and by the time she got to their bathroom, my dad was face down on the bathroom floor, blue, and bleeding and slightly foaming at the mouth (initially all she told me was face down and blue). She called 911 and they took him to Memorial Hospital in Belleville (the closest hospital to their house). During her call to me, I could hear my dad in the background and he was talking just fine and didn't sound out of it at all. She told me his blood work was normal and his EKG was fine. So, at this point, I wasn't too terribly worried... mostly concerned and anxious for updates.
The next step was a CT scan of his head and face. While they were waiting for that to be done and then waiting for the results, some of the updates my mom was sending me started to worry me. Dan and I had plans to drive home the next morning initially, but after these updates we made the decision to drive home that night. About a minute after we made that decision, I get another text from my mom and this one says... "Well, the Dr. just came in and said there is a mass in the brain". Needless to say, that was extremely difficult to hear and Dan's family was amazing with all of their support. They helped us get packed up in a hurry so we could get on the road. We started our 7 hour drive about 8pm.
45 minutes into our drive, all four kids are asleep and our van proceeds to break down. The belt that runs everything snapped off. So, Dan calls his parents who were nice enough to call around and find us a vehicle big enough for our family to use to drive back to Illinois (THANK YOU MITCH AND KATHY). By the time they find the vehicle, go pick it up, and drive to where we were, it was about 11pm. We got the everyone and everything switched to the new van and off we were once again. By now, my mom lets me know my dad is being admitted to the ICU, not a regular floor; and that he had two more tonic clonic (grand mal) seizures during his time in the ER and that the initial episode at home was the same thing.
Dan drove the majority of the drive, but around 4am I convinced him to let me drive since I was able to get at least some sleep. We got back to Belleville around 6am, I showered and headed straight up to the hospital to relieve my dad's buddy who had stayed with him all night so my mom could go home and try and get some rest.
Monday, April 25
Dad goes down for an MRI in the morning and it shows a 4cm mass in which the oncologist decided needed to be biopsied. We met the neurosurgeon who was going to do the surgery as well as the neurologist assigned to his case. The biopsy was scheduled for Tuesday around noon. Most of today was spent "fighting" with my dad so that he wouldn't get up out of bed or try to pull his foley catheter out. He was so combative the night before that they had to put him in restraints; and he spent most of that night trying to convince his buddy to get some scissors and cut him out of everything. Obviously, the body that was in front of me seemed to have swallow my dad whole. He was "in there" but buried really deep.
Around 7:00 or so this night, the neurologist pulled my mom and I out in the hall and was very up front with us. He told us that it was a "large tumor" and that it "didn't look pretty". As soon as my mom heard those words, she grabbed her chest and knowing that in times of stress she has a history of flipping into A-fib (abnormal heart rhythm), I quickly told the doctor her history. He went to call her cardiologist who said that she needed to be seen first thing in the morning. Meanwhile, I get my dad's nurse and ask her to get a portable pulse ox and heart rate monitor and check out my mom to see if she in fact flipped or if it was an anxiety attack. Luckily, it was anxiety and my mom had medicine she could take. But, for about 30 minutes I was running in between my dad's room and the waiting room checking on them both.
I got home from the hospital that night about 1030pm, was still working on getting in contact with my brother to find out his travel arrangements for the following day and chatted with Dan about how we were going to get him and his family picked up from the airport. My plan was to head back to the hospital in the morning by 7 to relieve another one of his buddies that was staying the night that night..... That was a LONG DAY!
Tuesday, April 26
Biopsy/surgery day... Got to the hospital at 7, my Aunt arrived with my mom (she came in to town from Florida to stay with my mom and help out) around 830ish. My dad had already gone down for his pre-surgical "mapping" MRI to help guide the surgery that afternoon. Once my dad got back from the MRI, my Aunt stayed with my dad so that I could take my mom over to her cardiologists office on the other side of the hospital. For a somewhat impromptu visit, they got her in pretty quickly to be seen which was helpful so we could get back to the ICU before they took dad down for surgery.
Before the appointment, I was stern with my mom and told her that she couldn't keep any symptoms that she has had in the past month from her doctor the way she attempts to keep them from me, although they always have a way of getting out. End result of her appointment: blood work and holter monitor for 3 weeks, along with a follow up appt in 2 weeks while her monitor is still on. This monitor's purpose is to record what her heart is doing 24 hours a day and alert the doctor's office any time she switches over to A-fib. The monitor put me at ease because it was one less thing I would worry about and let her doctor take care of... she couldn't have symptoms and try to hide them.
Dad went down around to the OR around 1130 and the waiting game began. About 230pm we got our first phone call as far as the progress of the surgery. They had just gotten to the brain and were ready to remove the tumor; and told us we should have another call in about 45 minutes or so. An hour and 15 minutes later, we got the call that they were closing him up and that the surgeon would be ready to come out and speak with us shortly. The surgeon informed us that he believed he got the whole tumor out (or gross portion of it that was visible as we learned Friday). Next step, more waiting for at least 48 hours for the pathology report to come in.
Dad came back to the ICU from surgery around 530pm and seemed to be doing great. They warned us that he may still be intubated from surgery because with surgery on the brain they let anesthesia wear off on its own rather than reverse it when surgery is finished. This is to help reduce the pressure inside his head which can cause many other undesirable problems. However, he was recovering quite nicely and was no longer intubated when he came back to the room. Physically he was doing very well and was not experiencing any neurological deficits from surgery, but the effects of the meds and his anesthesia wearing off caused us to "fight" again. He really wanted to get out of bed and insisted on stretching his arterial line to the limits (which could cause a HUGE bloody mess if he would have ripped it out). He was just extremely agitated.
It was about 10pm when another buddy came to take over the night shift to sit with my dad that night. I headed home and chatted with Dan for about an hour before he had to leave to pick up my brother and his family at the airport. Their flight was scheduled to get in at midnight, but didn't end up arriving till just after 1am. By the time he dropped them off at my parents and came back home it was 3am. What my husband won't do for me and my family! That's why I love him so much :-).... Another LONG day!
Wednesday, April 27
What I like to call our "down day". This day was mostly spent waiting and watching my dad become more alert by the hour, which was awesome to see. He was becoming "my dad" again, but was also starting to process just what was happening to him. He got his arterial line, foley, and fluids discontinued this day which made him EXTREMELY happy! By the end of the day (around 7pm) he was transferred out of the ICU and to the telemetry floor. I went home about 930pm this day because my brother volunteered to stay with my dad overnight.
Thursday, April 28
Results day... Lots of visitors were in and out all day which helped pass the time for my family, but for my dad it caused a lot of chaos in his head which was already running circles trying to take everything in. The toughest part of the day until about 6pm was seeing my dad so down and vulnerable and not being able to do anything to make it better. For someone who I've always seen as so strong, he is struggling with maintaining that and letting himself feel what he is feeling.
As I posted on facebook, we received the results this evening. Turns out, this tumor is the EXACT same type of cancer that my Uncle (dad's brother) was diagnosed with in Jan. 2008; stage 4 glioblastoma multiforme... the worst type of brain tumor you can have. The difference between the two brothers is this: location of the tumor, neurological deficits at time of diagnosis (my uncle was already experiencing some paralyzation on one side of body), my dad had insertion of chemotherapy "wafers" into the bed of the old tumor site during surgery which will dissolve and deliver local chemo for about 90 days, and my dad's was operable, whereas my uncles was inoperable because of it's location. What does all of this mean for my dad's prognosis? We would have to wait until the next day... REALLY? Yep, let our minds wonder all night...
Also today, we got our van back! YAY... NOT! It will be getting traded in as soon as we have the chance to go look for a new vehicle. Thank you so much to Dan's parents for driving it all the way here, picking up our two youngest children, and turning right around and driving back to Nebraska. Thank you also to his sister, Leisa, for offering to take our children under her wing for a bit so we are able to concentrate on other responsibilities such as work and school!
Friday, April 29
Q & A day! (and as everyone is talking about today; the royal wedding day which has definitely not been as front and central with our thinking). Early in the morning, about 630am, my dad was transferred to the oncology floor because he no longer needed the telemetry monitoring.
In a nutshell, here is what we found out today. Textbooks say that with treatment (surgery, radiation, and chemotherapy) all we are going to do is "slow the train down, not stop it" and that the prognosis is extremely poor. Having said that, reality has shown that it IS beatable. The oncologist we spoke with today said that he has a patient who had this type of tumor, took the chemo that my dad will be put on next for four years before stopping taking it. After that time, she has been tumor free for 1 year. So, though it is not likely, nor are the odds in our favor, the chance is there and allows us to have some hope... at least until we see how my dad's tumor is going to respond to the treatment.
We made the decision and have gotten the ball rolling to switch his treatment (which should start within 2 weeks) over to the Siteman Cancer Center in St. Louis. He is going to be seen by the same doctors who treated my Uncle. EVERY SINGLE doctor that has seen us is totally baffled and intrigued that two brothers have gotten the exact same type of brain tumor (and in such a close time frame). We now know that my dad probably had this tumor growing when my uncle was still living. He even asked his brother's doctors if this was familial, and should he be concerned about it? They all said that it was so rare, that he didn't need to worry. I think there was only record of it ever occurring just ONCE before. So, I guess that makes my family #2. We are hoping that by having my dad treated by the same people, that maybe some research will be able to be done and possibly help discover something that up till now is previously unknown. As of now, doctor's do not know what causes this type of tumor, nor does the "best" known treatment regimen give that grand of a prognosis.
Late this afternoon, we learned there would be a possibility that dad would be able to be discharged today or tomorrow. When we heard this, Dan and I went to my parents house and did some rearranging and set up a bed downstairs and added a hand rail to his outside steps to make it easier on him to get around until he regains all his strength. Obviously, since I am staying at the hospital with my dad tonight, he didn't come home today, so we are hoping tomorrow is the big day!
Sunday is my nephew's 1st birthday. Now that they are in town, we will be able to celebrate his birthday here. We need something to celebrate right now!
Monday I will go back to work and will begin to get used to my new altered life as a daughter who has a father with cancer. I have been my families rock up to this point and I know that I can keep it going because of the amazing support system I have. So, thank you again to everyone for all of their generosity and help with taking some of the burden with the small stuff so that I could be with my family at such a trying time... Continued prayers that my family is able to handle whatever is dealt to us during this journey with grace are greatly appreciated!
Thursday, March 24
My Prima Ballerina
Tonight was Kylie's first attempt at dance, or "ballet class/school" if you ask her. She has been twirling around the house now for a few months so we decided to give the real with a whirl. She's in a class for 3 year olds, even though she won't be 3 for a couple more weeks. Me, being the naive mom that I am, thinking my baby was still a baby; pictured her clinging to me for dear life and not wanting to go in the class without me. She's been talking a big game about how excited she is and about how she couldn't wait to go to ballet school. That's all I heard the whole way to the studio this evening.
Once we went in, she was definitely ready to get her shoes on and check the place out.
Ms. Patti walked us around the studio so she could get familiar with everything.
Reality hit when she gave me a hug and a kiss and walked willingly into the room and claimed her place in the circle right next to the teacher.
After practicing their butterflies they got in line and took turns walking with a wand and marching. If you notice, most of my pictures are of her back because we weren't supposed to be watching for a fear of distraction of all the little girls.
And, off she goes... and then comes back... (it's the little things that make us moms so proud, right!)
for some reason, I have no clue how to get this video rotated.
There is a certain joy as a parent watching your child try something new for the first time and seeing a never-ending smile on their face while doing so :-) When we left, Kylie announced she couldn't wait to come back again for more of her "ballet school". I'm beyond excited that she enjoyed it as much as she did!
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| In the parking lot before we went inside, showing off her dance bag from Grammy |
Ms. Patti walked us around the studio so she could get familiar with everything.
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| Posing by the ballet bar (not sure the technical term) when she realized this was the room she'd get to dance in |
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| This is me trying to sneak a picture of my big girl, of course you can just barely see her little pig tail bun sticking out behind the teacher |
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| Being the line leader to walk like a princess... being sure to stay put exactly where the teacher told her to stand while she started the music |
for some reason, I have no clue how to get this video rotated.
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| taking a break, that walking like a princess is tough work! |
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| walking around the room to "following the leader, the leader, the leader" |
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| Miss Patti, the owner of the studio, also the mom of one of the girls I graduated from nursing school with |
Tuesday, March 8
Gettin' all Nestalgic... Happy 6th Birthday Zach!
6 years ago, Dan and I just left to go to the hospital because I had been having contractions for about an hour and a half and they were now just 5 minutes apart. Once I got to the hospital and they checked me, I was already 5 cm dilated. At 3:20am on March 9th, 2005, I gave birth to our first son; Zachary Daniel Krajicek.
He came into the world weighing in at 7lbs. 5oz. and measuring 19 1/4 inches long. Mommy and Daddy were so excited!, as was Grandma who joined us at the hospital over night while Grandpa stayed with Heidi at our house.
Yep, you're not seeing things, they took two footprints of his left foot... Perhaps the nurses were tired in the middle of the night as well?? The next morning, Grandpa brought our 14 month old Heidi to the hospital to meet her new little brother. (Remind me to apologize to Heidi for the mullet!)
Lots of people came to visit us in the hospital, Aunt Leisa and cousin Val were just a couple of them!
We brought our new baby boy home on Friday, March 11 where he had an eager big sister waiting for him. In addition, there to greet him were several of my family members who made the trek to Nebraska, to include my Uncle Kevin who passed away in 2009. I wish I would have known then just how much I would treasure this picture! I love you and miss you dearly, Uncle!
Our doctor's office helped welcome Zach to Gretna, NE as well.
Zach was baptized on my dad's birthday, April 17th, 2005. His Godparents were chosen as his Uncle Michael and Aunt Katie.
Here are some more pictures I came across while looking through Zach's baby book and first photo album.
It's fun to look back and see how much has changed since your babies were born, but it's also sad! I read through Zach's entire baby book tonight with him and the other kids and looked at all his baby pictures. They made me promise that we do this for each child on every birthday from now on. Sounds like a plan to this Mommy :-)
HAPPY 6th BIRTHDAY tomorrow morning Zach! You've added so much joy to my life and I look forward to a lifetime of additional memories with you.
He came into the world weighing in at 7lbs. 5oz. and measuring 19 1/4 inches long. Mommy and Daddy were so excited!, as was Grandma who joined us at the hospital over night while Grandpa stayed with Heidi at our house.
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| Summer 2005 |
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| First trip to Vala's Pumpkin Patch, Columbus Day 2005 |
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| First Halloween-- Yoda! I should have known then he was destined to LOVE Star Wars |
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| Summer 2006- 14 months old |
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| He loved looking at the chickens and picking their eggs at Grandma and Grandpa's house! |
HAPPY 6th BIRTHDAY tomorrow morning Zach! You've added so much joy to my life and I look forward to a lifetime of additional memories with you.
Saturday, March 5
So, it's been a while!
Thanks, Tami, for reminding me that I ever started this blog! Funny that I just looked at the last post I made and realized that I wrote it right before I started nursing school. That was the day that my life, as I knew it, was over. Now, I have it back and it's even better :-) Of course, tons has happened, so I will try to slowly update everything. But as for this post, it's just to say that I'm back and will attempt to keep everything current from now on!
This past weekend Heidi tried out volleyball for the first time. All of the programs we can find are usually for older kids (3rd and 4th grade at the youngest) so we were excited when there was a one day camp for the little ones. It's hard telling just how much she enjoyed herself. She had just missed a week of school with pneumonia and had only been on antibiotics just over 24 hours so she wasn't completely up to par. Her favorite thing so far is setting, but she is eager to get more practice at everything when she is not in a group of about 50 or so kids. Unfortunately, her mom isn't the best one to teach her this sport because I was always that kid who wore glasses and got hit in the head with the ball.... Thank goodness that wasn't the case with her! At the end of the day, she says she basketball is still her favorite, but wants to buy a volleyball so she can keep practicing. The next sport she wants to attempt is tennis this summer. I am thoroughly enjoying all the different sports already... I'm going to be one heck of a "sports" mom by the time my kids get older... LOOK OUT!
"bumping" practice...
setting practice
This past weekend Heidi tried out volleyball for the first time. All of the programs we can find are usually for older kids (3rd and 4th grade at the youngest) so we were excited when there was a one day camp for the little ones. It's hard telling just how much she enjoyed herself. She had just missed a week of school with pneumonia and had only been on antibiotics just over 24 hours so she wasn't completely up to par. Her favorite thing so far is setting, but she is eager to get more practice at everything when she is not in a group of about 50 or so kids. Unfortunately, her mom isn't the best one to teach her this sport because I was always that kid who wore glasses and got hit in the head with the ball.... Thank goodness that wasn't the case with her! At the end of the day, she says she basketball is still her favorite, but wants to buy a volleyball so she can keep practicing. The next sport she wants to attempt is tennis this summer. I am thoroughly enjoying all the different sports already... I'm going to be one heck of a "sports" mom by the time my kids get older... LOOK OUT!
"bumping" practice...
setting practice
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