Wednesday July 22nd: The day I was supposed to be on a plane to Utah. Instead I'm stuck here in the hospital getting medication that will probably make me feel sick later. Oh well. The morning did not start out very fun - after having some labs drawn, I couldn't eat any breakfast because I was going under heavy sedation that would make me sick if I did eat. Around 8:30 I had the procedure which was a spinal tap and bone marrow biopsy, during which the oncologist also pushed some chemo into my spine. Thankfully, the spinal tap showed no signs of the cancer spreading anywhere into the spine, but we still haven't heard what the bone marrow biopsy results were. I puked once we got back to my room from the procedure, but only a little bit. We figured that was from the sedation medicine. That chemo in my spine was really the only chemo I received all day until later in the night.
I had an echo at 3:00 to check my heart function (yucky gel) and my siblings came to visit with Mom to switch out Dad. They brought some adorable get well posters (which I'll post pix of soon) and some fake flowers that the young women had sewn for their activity. They are ADORABLE! And they'll last for forever - thank you so much! You guys are the best! They also brought a cookie boquet that my Dad's company gave to me. Thanks to the Walgreens Team at Colgate - the cookies are delicious! My back pain was basically gone, though there was a still a bit a throb and my spinal tap site was still sore if I accidentally put pressure on it. Ron Blasinski came to visit after the echo - he's the Dad of the girl I got my second heart from. We chatted for a while and he brought us some chocolates which are fantastic! It was good to see him - I haven't seen him in forever because he's been busy working on his house in Indiana. Thanks for dropping by Ron - it was really good to see you smiling! Dr. Pahl, my transplant cardiologist, dropped off some movies that her daughters had picked out for us to borrow - they should keep me busy for a while!
We stopped one of my pain meds, Lyrica, because it can interfere with one of my chemo drugs, but the other painkiller, Tramadol (which was started yesterday) seems to be helping quite a bit. Around 7:30, we were moved to the fourth floor because they have the ability to do some certain tests quickly that would take days for the fifth floor to get done that are critical to continuing chemo. The nurse on the fourth floor, Margie, seemed to be really nice and it's nice to know that she knows exactly what she's doing in giving the chemo. I'm in room #405. If you want to call, you can reach me by the number 773-880-3230. You may have to ask for my room number.
We started the prednisone that night and the Rituximab was infused around 8. I did puke before the infusion was over, but we attributed it to the spinal chemo. The Rituxmab infusion took three hours, and I was given some Ativan and Kytril (an anti-nausea drug) that both sent me into a deep sleep. Later in the night, I got some Vincristine which was a one minute push along with some prednisone. The first day was finished with the Methotrexate which I get only once each cycle. This time I got it at five in the morning. Technically, that would be today (which is Thursday - yes I'm blogging late, sorry) but I'll just start that day now.
Thursday July 23rd: So today I was supposed to be going with Greg and Wendy to the temple open house. I hope you guys took lots of pics to email me - I was so sad about missing that event and seeing your family! Anyway, I slept soundly the whole night long and woke up with no back pain at all! It's a miracle - thank you to everyone for your prayers and fasting in my behalf. Now we just have to lick this cancer, and I'm good to go!
I got another echo around 7:30 (everyone wants to get everything done so early around here!) which showed that everything is fine and dandy with my heart. The nurse gave me some more Kytril around 9 in the morning, so I struggled to stay awake to eat and watch Oprah with Mom, but I just had to go to sleep around 10. I didn't even wake up until 2 in the afternoon. It felt SO good to sleep that long! :) I've been on fluids to help flush the chemo out of my kidneys, so I've had to run to the bathroom like crazy all day - that's what probably woke me up! :)
We got the PET scan results from Monday: the cancer is only in the spots where we expected it to be which means we caught it before it spread anywhere else! We've also been doing some research on me getting a free wig and I've downloaded the photos onto our computer so I'll be posting those soon. They also put me on this weird pill that sits in the back of my tongue that I'm supposed to use like a cough drop. It works like the liquid Nystatin, but it has no taste which is AMAZINGLY wonderful!
Mom and I are going to eat dinner soon - the food here isn't horrible, but I do crave something homemade. My bathroom on this floor has a shower and tub, but the walkway from the toilet to the sink is so narrow, I can barely squeeze past my IV pole to wash my hands! At least I get my own shower, though. The next drug doesn't start until eight o'clock tomorrow morning - unless you count the oral meds. It's going to be a fairly easy night again - I think they're planning on giving me Ativan again to help me sleep. Maybe we'll watch a movie.
I'll post some pictures tonight from the hospital stay. Enjoy! I love you all! And thank you for your prayers - miracles do happen and they are happening right now.
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Update #2 - Chemo needed
Tuesday July 21st: Today was a rather eventful day. As I said before, today the oncologist (cancer doctor) was going to come in with a plan. First off, I had a horrible night! The pain in my back kept me up most of the night and the TENS unit didn't really help - it just became irritating. Heat packs helped for a while, but I just am not comfortable in a laying down position, which I am craving so I can go to sleep. It's really hard to sleep when you're sitting up no matter how many pillows are supporting your head. So I'm taking a valium tonight to help me sleep better. Anyway, we officially woke up for the day around seven and had breakfast. Then I took a wonderful shower in boiling hot water that felt SO GOOD on my back! So that helped me feel a ton better. The pain doctors stopped my continuous dose of painkiller (that I believe I am now resistant to) which is one more step to getting home! A massage therapist came by around 10:30 and gave me a full body massage: head, neck, back (of course), legs, and arms. It felt SO good and put me to sleep. The IV team came and re-accessed my port after a late lunch. The ports are special because they are a prime target for infection, so the dressing has to be changed often, the caps on the tubing has to be changed every three days, and the actual needle has to be changed every week. Which stinks for me, but it wasn't too painful.
Then the oncologist, Dr. Weinstein, came in with her plan. The biopsy showed the PTLD which was also EBV positive and is a type of B-cell lymphoma called plasmablastic lymphoma. I have no idea what that means except that it is extremely agressive and can spread quickly - especially to the spinal fluid which would not be good. Surgery wouldn't help because lymph nodes really shouldn't be removed and they are tissue that has something that makes them difficult to remove. So no surgery. We've decreased my immunosuppression medication (the meds that help keep my body from rejecting the heart) to try and help with treating the cancer.
So here's the plan: we start chemo tomorrow. Dr. Weinstein is going to do a spinal tap and bone marrow biopsy on me in the morning as well as inject some chemo drugs into my spinal fluid. This will all happen while I'm under very heavy sedation. Then the first drugs will begin. She will be giving us a schedule tomorrow of the drugs I'm supposed to get and when, so I'm not exactly sure what I'll be getting tomorrow. I'll let you know. The medications being used in this "recipe" (for those of you who are interested in the technical medical info) are: prednisone (at a very high dose), cyclophosphomide, adriamycin, vinchristine, rituxmab (possibly), methotrexate, and I think there's one other that I didn't write down. The cycle of meds begins tomorrow and will last for 4-5 days. Each med is different: some are continuous drips, some are pills, some are quick infusions. After that first cycle, there's a rest period of 2 to 3 weeks which is when side effects, such as losing hair, will begin to show. The oncologist wants a scan two weeks after the cycle has been finished to see how the cancer is responding. She doesn't expect it to be fully gone, but she is very optimistic that it will have decreased since she is using a rather heavy dose of this chemo "recipe." The cycles have to be completed in the hospital, so I would be inpatient for 4 to 5 days with each cycle that happens. Hopefully we'll only need 2 or 3. Dr. Weinstein says that the drugs she's using are much less intense - when it comes to side effects - than the ones I was given last time with chemo, but it's hard for me to imagine that. Hopefully I won't be too nauseous and can just be knocked out of it the whole time by painkillers and anti-nausea meds. :-) The good thing about these drugs is that some of them are actually used in treating rejection, so the transplant team isn't terribly worried about my heart. The drugs basically dissolve or melt the cancer and then it exits the body through the kidneys and out as human excretement. That's the plan to get rid of the cancer and we're praying it will work.
On the happier side of the day, after that I was pretty much in pain for a while. After crying for a while, I took a nap again and Mom and I took a walk and played some Racko. We both have been working on some brain puzzles that Rachel so generously is letting us use (thanks Rach!). Dad's actually working on one right now and it's kind of funny to watch him think so hard at 10:30 at night. :) Dad came with Nathan to switch out Mom, and six of the young men in my ward came to visit along with the YM president. They brought some treats and visited for a while. It was very cheering to see some familiar faces from the normal world that I am currently not a part of. Once they left, Mom, Dad, Nathan, and I hung out for a bit and took a family walk, then Mom and Nathan left. I got unhooked from my IV painkiller for a while to see how I do (just until midnight) so Dad and I took a long walk to look at the skyline and explore the floor while I didn't have to push an IV pole around. So that's been today! Hopefully I'll sleep long and peacefully without pain tonight! Thank you for your prayers and fasting for me - they have been keeping me strong and positive throughout this experience. I love you all!
Then the oncologist, Dr. Weinstein, came in with her plan. The biopsy showed the PTLD which was also EBV positive and is a type of B-cell lymphoma called plasmablastic lymphoma. I have no idea what that means except that it is extremely agressive and can spread quickly - especially to the spinal fluid which would not be good. Surgery wouldn't help because lymph nodes really shouldn't be removed and they are tissue that has something that makes them difficult to remove. So no surgery. We've decreased my immunosuppression medication (the meds that help keep my body from rejecting the heart) to try and help with treating the cancer.
So here's the plan: we start chemo tomorrow. Dr. Weinstein is going to do a spinal tap and bone marrow biopsy on me in the morning as well as inject some chemo drugs into my spinal fluid. This will all happen while I'm under very heavy sedation. Then the first drugs will begin. She will be giving us a schedule tomorrow of the drugs I'm supposed to get and when, so I'm not exactly sure what I'll be getting tomorrow. I'll let you know. The medications being used in this "recipe" (for those of you who are interested in the technical medical info) are: prednisone (at a very high dose), cyclophosphomide, adriamycin, vinchristine, rituxmab (possibly), methotrexate, and I think there's one other that I didn't write down. The cycle of meds begins tomorrow and will last for 4-5 days. Each med is different: some are continuous drips, some are pills, some are quick infusions. After that first cycle, there's a rest period of 2 to 3 weeks which is when side effects, such as losing hair, will begin to show. The oncologist wants a scan two weeks after the cycle has been finished to see how the cancer is responding. She doesn't expect it to be fully gone, but she is very optimistic that it will have decreased since she is using a rather heavy dose of this chemo "recipe." The cycles have to be completed in the hospital, so I would be inpatient for 4 to 5 days with each cycle that happens. Hopefully we'll only need 2 or 3. Dr. Weinstein says that the drugs she's using are much less intense - when it comes to side effects - than the ones I was given last time with chemo, but it's hard for me to imagine that. Hopefully I won't be too nauseous and can just be knocked out of it the whole time by painkillers and anti-nausea meds. :-) The good thing about these drugs is that some of them are actually used in treating rejection, so the transplant team isn't terribly worried about my heart. The drugs basically dissolve or melt the cancer and then it exits the body through the kidneys and out as human excretement. That's the plan to get rid of the cancer and we're praying it will work.
On the happier side of the day, after that I was pretty much in pain for a while. After crying for a while, I took a nap again and Mom and I took a walk and played some Racko. We both have been working on some brain puzzles that Rachel so generously is letting us use (thanks Rach!). Dad's actually working on one right now and it's kind of funny to watch him think so hard at 10:30 at night. :) Dad came with Nathan to switch out Mom, and six of the young men in my ward came to visit along with the YM president. They brought some treats and visited for a while. It was very cheering to see some familiar faces from the normal world that I am currently not a part of. Once they left, Mom, Dad, Nathan, and I hung out for a bit and took a family walk, then Mom and Nathan left. I got unhooked from my IV painkiller for a while to see how I do (just until midnight) so Dad and I took a long walk to look at the skyline and explore the floor while I didn't have to push an IV pole around. So that's been today! Hopefully I'll sleep long and peacefully without pain tonight! Thank you for your prayers and fasting for me - they have been keeping me strong and positive throughout this experience. I love you all!
Monday, July 20, 2009
Hospital Update #1
Since the fourth of July I've had this back pain along with some belly pain that's kept me up at night and made regular activities rather difficult. I made it through youth conference all right, and then was okay during the three-hours of Church on Sunday, so we assumed I would be okay on the trip to Nauvoo that would start on Monday. So here's the story of what's happened over the past week:
Monday July 13th: We were all packed and ready to go to Nauvoo so I was going to stick it out with my current back pain which wasn't horrible. We spent five hours in the car - the pain spiked once really badly, but it quickly went back down to a more stable and tolerable level. When we arrived, my pain began to spike again and it wouldn't go down. We visited with Grandma and Grandpa Hyde for a bit (they're serving a six-month temple mission in Nauvoo) and went down to the visitor's center to see one of the shows that the performing missionaries put on. After the show, my pain was again spiking (this whole time I was carrying a lime green squish pillow that Rachel so generously gave to me that helped the pain in my belly a bit) so Mom and Dad figured out where the local hospital was with the best emergency care: Keokuk Hospital. We drove there while the kids hung out with Grandma and Grandpa and Mom checked me in. While we were sitting there not feeling very good about our decision, this lady came out saying, "He's such a quack. He shouldn't even be a real doctor." That pretty much solidified our decision for Dad to drive me the six hours back here to my regular hospital, Children's Memorial. We ate dinner with my grandparents before we left, and it was nice that we had everything we would need (toothbrush, toothpaste, underwear, etc.) for a long hospital stay. On the drive we listened to my iPod until it ran out of battery and watched Eight Below (a very intense movie that is guaranteed to keep a driver awake even if he can just hear the sound) and had some pretzels and sunflower seeds. We arrived at the Emergency Room at about 1:30 in the morning.
Tuesday July 14th: I got rushed in to the ER since I'm a transplant patient and I got a nurse, Katie, who had been working in the OR where I had me biopsies done. So I got my port accessed painlessly and they gave me a dilaudid bolis (a big dose of a heavy painkiller) which pretty much knocked me out for a while. They took an x-ray which was very painful because it hurt to lay flat and I had to lay on this hard metal table with no support whatsoever. They also did an ultrasound of my abdomen which was fairly painful as well because of the belly pain I had been having. Eventually we moved upstairs to the fifth floor around 8 or 9 in the morning to the room I have always been in: room 517. They got me drinking some contrast for a CT scan which I had later in the day. That was a bummer because they had to give me a second IV for their special contrast and then I had to lay flat, but at least they attempted to make me comfortable. That was pretty much our day.
Wednesday July 15th: We received CT scan results which showed some swollen lymph nodes in my abdomen. They decided I needed a laparoscopic biopsy to test one of the swollen lymph nodes to figure out why they were swollen. The laparoscopic biopsy would be minimally invasive as opposed to a major surgery where they would cut me open. We met the surgeon and anesthesia people that would be doing the procedure, and they all seemed really nice. Dad left later in the day to go home to meet Mom and the kids who were in a rental car that needed to be returned. Mom came back to stay with me.
Thursday July 16th: Since I was an add-on surgery, my biopsy didn't start until 11 am. I was STARVING by that time since I hadn't been allowed to eat anything since midnight. I took a bath before the biopsy, and a massage therapist came by so I got a really nice foot massage; both helped ease the hunger. :-) I pretty much recovered all day long - some doctors came by to check on the incisions but that's it. The lymph nodes are really close to this nerve called the celiac plexus which stretches from the back to the abdomen - which explains the back pain. We started Lyrica - a pill used to treat painful nerve diseases. Mom stayed on that night.
Friday July 17th: Today started the days of waiting. And trying to find ways to fix my pain, or at least get it to a tolerable level, so I can go home soon! We started these Lidoderm patches which have a certain amount of lidocaine in them so they kind of numb the area. I've been keeping them on for 12 hours during the day, then I have to take them off for 12 hours at night. They seem to be helping a TON. We also began decreasing the continuous flow of dilaudid (the painkiller) that I've been getting through the PCA pump. The pump has me on a continuous flow which is being decreased and a demand amount that I can get when I push a button. We had another old nurse, Susan, who is so little and full of energy! Dad relieved Mom that night.
Saturday July 18th: Another day of waiting...or so we thought. Nothing usually happens on the weekends, so we expected to just hang out and continue with helping the pain and getting stronger. However, one of the doctors came by and told us that the preliminary results, which turned out to be very official, showed signs of the cancer I had three years ago - PTLD. Post-transplant lymphoproliferative disease. Just in case you were wondering :) To add to the depression of the day, I announced that I would not be going to Utah on the 22nd and that my EFY was also cancelled. I did walk 7 laps around the floor which was an improvement from half a lap the day before. My siblings came along with Mom to pull me up out of depression for a while. We played a bunch of games and ate dinner together in the tiny room that has the microwave. I actually got to go since I'm not in isolation - it's been great because I've never really been able to go to the acitivities that they have on the floor because of isolation. It's also fun to be able to see everyone's faces since they don't have to gown up or wear masks anymore! Anyway, they stayed for a several hours and went home with Dad around seven.
Sunday July 19th: Yet another day of hanging out. Mom and I went to the Brown Family Life Center which is a play area on the floor with movies and games and computers, etc. We saw some cute dogs that came to visit and worked on the computer for a bit and explored the room off the center called the Teen Lounge that had a TON of movies (including National Treasure!!) and lots of games that were in much better condition than the ones that smaller kids have access to. We came back to the room loaded up with Scattergories and a couple of movies. I made a calendar to track what we've done each day (the only reason I can remember everything that I'm reporting). We began using a second lidoderm patch to cover more spots on my back to help the pain, and we decreased my continuous pain med again. We called family to report and took several walks around the floor. We read our scriptures and had a very nice Sunday.
Monday July 20th: So I'm still bummed about missing my Utah trip, especially as the scheduled day draws nearer, but there's really nothing I can do about it. So I'm trying to stay positive. We had a pretty eventful day today, actually. Transport picked us up around 7:15 in the morning to take us to Northwestern - the adult hospital nearby that has the PET scan equipment. The scan went well, though it was a little painful to lay flat again. Once the transport team got me and my mom situated in the ambulance to go home, the ambulance wouldn't start. They tried to use the jumper cables with their portable battery, but they had no luck. So they asked a security guy to bring his car around so they could try to use jumper cables with his car. Mom was taking pix of the whole event, but when she took a pic of the security guard (only his backside) he whirled on her like she was some sort of criminal. She was like, "um, I'm just the mom. Just taking some scrapbook photos." He seemed a little annoyed but he just said, "I was going to call for back up. There have been some weird things going on lately." Of course, Mom and I found this whole thing to be quite hilarious and typical of something that would happen to us. The ambulance eventually started and one of the nurses that was with us felt so bad that she bought us lunch from this delicious Thai place. Once we got back to the hospital, it was past noon, so we ate lunch and then this lady came in with a TENS unit. There are four stickers that you put where you're having pain and they hook up to this machine that makes a little tingling that feels kind of like a massage. You can set it on different modes and one of the modes releases endorphins so it helps the pain for a few hours after you take it off. I tried it on this setting first for a while and it put me right to sleep! I must have placed it near a nerve that activates that part of the brain, or something like that. So I slept until about five and when I woke up we decided to watch National Treasure after a walk and a bathroom break. Dinner was leftovers from when the kids had come to visit which was delicious! We also decreased the continuous dose of painkiller once again. I might be able to go completely off of a continuous dose tomorrow!
So that's what's been happening so far. It's ten at night on Monday and Mom and I are heading to bed soon. Thank you for all of your prayers and fasting for me! They have been helping and a miracle will happen! I love you all! I'll try and update this daily, but it depends on if the internet here works and if I can get to a computer. Dad's supposed to bring our laptop tomorrow, so that should make it easier. Anyway, have a wonderful day, smile and be positive!
Monday July 13th: We were all packed and ready to go to Nauvoo so I was going to stick it out with my current back pain which wasn't horrible. We spent five hours in the car - the pain spiked once really badly, but it quickly went back down to a more stable and tolerable level. When we arrived, my pain began to spike again and it wouldn't go down. We visited with Grandma and Grandpa Hyde for a bit (they're serving a six-month temple mission in Nauvoo) and went down to the visitor's center to see one of the shows that the performing missionaries put on. After the show, my pain was again spiking (this whole time I was carrying a lime green squish pillow that Rachel so generously gave to me that helped the pain in my belly a bit) so Mom and Dad figured out where the local hospital was with the best emergency care: Keokuk Hospital. We drove there while the kids hung out with Grandma and Grandpa and Mom checked me in. While we were sitting there not feeling very good about our decision, this lady came out saying, "He's such a quack. He shouldn't even be a real doctor." That pretty much solidified our decision for Dad to drive me the six hours back here to my regular hospital, Children's Memorial. We ate dinner with my grandparents before we left, and it was nice that we had everything we would need (toothbrush, toothpaste, underwear, etc.) for a long hospital stay. On the drive we listened to my iPod until it ran out of battery and watched Eight Below (a very intense movie that is guaranteed to keep a driver awake even if he can just hear the sound) and had some pretzels and sunflower seeds. We arrived at the Emergency Room at about 1:30 in the morning.
Tuesday July 14th: I got rushed in to the ER since I'm a transplant patient and I got a nurse, Katie, who had been working in the OR where I had me biopsies done. So I got my port accessed painlessly and they gave me a dilaudid bolis (a big dose of a heavy painkiller) which pretty much knocked me out for a while. They took an x-ray which was very painful because it hurt to lay flat and I had to lay on this hard metal table with no support whatsoever. They also did an ultrasound of my abdomen which was fairly painful as well because of the belly pain I had been having. Eventually we moved upstairs to the fifth floor around 8 or 9 in the morning to the room I have always been in: room 517. They got me drinking some contrast for a CT scan which I had later in the day. That was a bummer because they had to give me a second IV for their special contrast and then I had to lay flat, but at least they attempted to make me comfortable. That was pretty much our day.
Wednesday July 15th: We received CT scan results which showed some swollen lymph nodes in my abdomen. They decided I needed a laparoscopic biopsy to test one of the swollen lymph nodes to figure out why they were swollen. The laparoscopic biopsy would be minimally invasive as opposed to a major surgery where they would cut me open. We met the surgeon and anesthesia people that would be doing the procedure, and they all seemed really nice. Dad left later in the day to go home to meet Mom and the kids who were in a rental car that needed to be returned. Mom came back to stay with me.
Thursday July 16th: Since I was an add-on surgery, my biopsy didn't start until 11 am. I was STARVING by that time since I hadn't been allowed to eat anything since midnight. I took a bath before the biopsy, and a massage therapist came by so I got a really nice foot massage; both helped ease the hunger. :-) I pretty much recovered all day long - some doctors came by to check on the incisions but that's it. The lymph nodes are really close to this nerve called the celiac plexus which stretches from the back to the abdomen - which explains the back pain. We started Lyrica - a pill used to treat painful nerve diseases. Mom stayed on that night.
Friday July 17th: Today started the days of waiting. And trying to find ways to fix my pain, or at least get it to a tolerable level, so I can go home soon! We started these Lidoderm patches which have a certain amount of lidocaine in them so they kind of numb the area. I've been keeping them on for 12 hours during the day, then I have to take them off for 12 hours at night. They seem to be helping a TON. We also began decreasing the continuous flow of dilaudid (the painkiller) that I've been getting through the PCA pump. The pump has me on a continuous flow which is being decreased and a demand amount that I can get when I push a button. We had another old nurse, Susan, who is so little and full of energy! Dad relieved Mom that night.
Saturday July 18th: Another day of waiting...or so we thought. Nothing usually happens on the weekends, so we expected to just hang out and continue with helping the pain and getting stronger. However, one of the doctors came by and told us that the preliminary results, which turned out to be very official, showed signs of the cancer I had three years ago - PTLD. Post-transplant lymphoproliferative disease. Just in case you were wondering :) To add to the depression of the day, I announced that I would not be going to Utah on the 22nd and that my EFY was also cancelled. I did walk 7 laps around the floor which was an improvement from half a lap the day before. My siblings came along with Mom to pull me up out of depression for a while. We played a bunch of games and ate dinner together in the tiny room that has the microwave. I actually got to go since I'm not in isolation - it's been great because I've never really been able to go to the acitivities that they have on the floor because of isolation. It's also fun to be able to see everyone's faces since they don't have to gown up or wear masks anymore! Anyway, they stayed for a several hours and went home with Dad around seven.
Sunday July 19th: Yet another day of hanging out. Mom and I went to the Brown Family Life Center which is a play area on the floor with movies and games and computers, etc. We saw some cute dogs that came to visit and worked on the computer for a bit and explored the room off the center called the Teen Lounge that had a TON of movies (including National Treasure!!) and lots of games that were in much better condition than the ones that smaller kids have access to. We came back to the room loaded up with Scattergories and a couple of movies. I made a calendar to track what we've done each day (the only reason I can remember everything that I'm reporting). We began using a second lidoderm patch to cover more spots on my back to help the pain, and we decreased my continuous pain med again. We called family to report and took several walks around the floor. We read our scriptures and had a very nice Sunday.
Monday July 20th: So I'm still bummed about missing my Utah trip, especially as the scheduled day draws nearer, but there's really nothing I can do about it. So I'm trying to stay positive. We had a pretty eventful day today, actually. Transport picked us up around 7:15 in the morning to take us to Northwestern - the adult hospital nearby that has the PET scan equipment. The scan went well, though it was a little painful to lay flat again. Once the transport team got me and my mom situated in the ambulance to go home, the ambulance wouldn't start. They tried to use the jumper cables with their portable battery, but they had no luck. So they asked a security guy to bring his car around so they could try to use jumper cables with his car. Mom was taking pix of the whole event, but when she took a pic of the security guard (only his backside) he whirled on her like she was some sort of criminal. She was like, "um, I'm just the mom. Just taking some scrapbook photos." He seemed a little annoyed but he just said, "I was going to call for back up. There have been some weird things going on lately." Of course, Mom and I found this whole thing to be quite hilarious and typical of something that would happen to us. The ambulance eventually started and one of the nurses that was with us felt so bad that she bought us lunch from this delicious Thai place. Once we got back to the hospital, it was past noon, so we ate lunch and then this lady came in with a TENS unit. There are four stickers that you put where you're having pain and they hook up to this machine that makes a little tingling that feels kind of like a massage. You can set it on different modes and one of the modes releases endorphins so it helps the pain for a few hours after you take it off. I tried it on this setting first for a while and it put me right to sleep! I must have placed it near a nerve that activates that part of the brain, or something like that. So I slept until about five and when I woke up we decided to watch National Treasure after a walk and a bathroom break. Dinner was leftovers from when the kids had come to visit which was delicious! We also decreased the continuous dose of painkiller once again. I might be able to go completely off of a continuous dose tomorrow!
So that's what's been happening so far. It's ten at night on Monday and Mom and I are heading to bed soon. Thank you for all of your prayers and fasting for me! They have been helping and a miracle will happen! I love you all! I'll try and update this daily, but it depends on if the internet here works and if I can get to a computer. Dad's supposed to bring our laptop tomorrow, so that should make it easier. Anyway, have a wonderful day, smile and be positive!
Sunday, May 3, 2009
Saturday, April 11, 2009
Pictures!
So I decided to actually put some pictures on. They're in order of parks and when we visited them, but they got backwards! Then at the top are all the pix of my birthday and license and pre-spring break. The joys of blogger! Hope you all enjoy!
I got glasses!! I can actually see now! It's really amazing.
Celebrating my birthday - I really can't take anymore candles!
Driving with my family to Arby's - my dinner choice. I'm Thinking Arby's!
Where we stayed during our trip to Florida. It was really nice - the room that we were in was spacious and well furnished, and the beds were pretty comfy.
Our last family picture at DisneyWorld!
Hot, tired, and I had a cramping stomach. Great way to spend your last day at Magic Kingdom.
Nathan was explaining his plan for the rest of the evening with plenty of hand motinos
The lovely Cinderella with her slightly middle-aged Prince Charming. I missed the show - Dad and I stayed home for the morning sick - but I thought this picture was really cute!
Mickey and Minnie together - aww! 
Everyone loves Tigger!
One of those great candids that is one in a million! Megan is mad, Rachel is laughing, Nathan's explaining, I'm drinking some water, and Dad is trying to talk.
Here's the hilarious giraffe! No one took a pic of his head in the truck, but he did stand in the way of a different truck for a while! 
Four kids - we'd only been at the park for about an hour so we weren't terribly tired yet!
The Nemo musical was surprisingy cute. The puppetry was amazing!
The Festival of the Lion King is probably the best thing about Animal Kingdom. Get to the early show - no one was there because they all wanted to take the safari early. 
Megan, Rachel, and Dad braved each and every roller coaster throughout Disney.
Here's a pretty good picture of the stunt show, but you have to see it to really enjoy it!
At the Lights, Motors, Action! stunt show, Herbie made an appearance and split in two!You definitely need to see this show at MGM if you ever go to Disney - especially if you like car chases!
Indiana Jones stunt show - very cool to see how they make movies like Indiana Jones.
There were adorable topiaries everywhere! This one was on the Backlot Tour at MGM.
Goofing around in the gift shop
Main Street USA looks gorgeous with all of these lights!
Like I said, the fireworks were amazing!
Rows and rows and rows and rows of cars - there were a couple other lots this full!
Megan and I managed to stay pretty dry on Splash Mountain
The family favorite: Big Thunder Mountain Railroad
Watch out - they spit! they really did at the park!
First day @ Magic Kingdom - this was at the front gate.
We were all hot and tired!
Geckos everywhere! Megan freaked out whenever she saw one! :)
Everyone go "awww."
Nice shot of the ball and me and Nathan
The temple grounds were gorgeous - especially the palm trees!
Rest stop
Home of the Kentucky Derby - the biggest horse race of the year!
Indiana Jones stunt show - very cool to see how they make movies like Indiana Jones.
There were adorable topiaries everywhere! This one was on the Backlot Tour at MGM.
Goofing around in the gift shop
Main Street USA looks gorgeous with all of these lights!
Like I said, the fireworks were amazing!
Rows and rows and rows and rows of cars - there were a couple other lots this full! 
Megan and I managed to stay pretty dry on Splash Mountain 
The family favorite: Big Thunder Mountain Railroad 
Watch out - they spit! they really did at the park!
First day @ Magic Kingdom - this was at the front gate. 
We were all hot and tired!
Geckos everywhere! Megan freaked out whenever she saw one! :)
Everyone go "awww."
Nice shot of the ball and me and Nathan
The temple grounds were gorgeous - especially the palm trees!
Rest stop
Home of the Kentucky Derby - the biggest horse race of the year! Make sure to watch this year's on Saturday May 2 on NBC!
Wow - that's a lot! Hope you made it through them all without going totally crazy!
Starting to Blog again...hopefully it WILL become a habit!
Okay, so I haven't blogged in forever so I'm just going to start fresh with what's happened in this year so far. You can check the family blog for pictures: holbrookchicago.blogspot.com
In January I celebrated my 16th birthday! I went and saw Bedtime Stories with my parents (awesome movie by the way) and I got my LICENSE!!! So now I drive to seminary alone. It's kind of nice to have some quiet time in the mornings.
We were able to correct some intestinal problems, and since then I've been feeling great, except a little tired. So the kidney people decided to get me some iron infusions and now I feel a whole lot less exhausted. It's a very nice feeling.
My dad got called to be the Bishop, so we see a little bit less of him now.
I ended first semester being sixth in my class 582 - whoo hoo! My goal was to be valedictorian, but I'll live with the top ten. Now I'm in probably the best/worst semester of my life: love global issues and I'm learning a ton about current events. Did you know there are actually pirates? family joke My English class is actually quite interesting, especiall since we just started rhetoric - sarcastic writing. Health is probably the easiest class ever. I really like creative writing, but our fiction unit is about to end. We did this really cool thing called a 55 word story - it's actually really hard to write a story in 55 words or less! I strongly dislike science, but at least we don't have to do anymore lab reports and I managed to bring my grade up. This is the first time in a long time that I have ever had an A+ in math - I give all the credit to my teacher and her amazingly organized notes that actually make sense. AP European History is fun, but we're racing to the finish since our AP Test is only 27 days away. That's only 27 days to study over 800 years of history. YIKES! But I love my teacher (who happens to be my global issues teacher and is an absolutely amazing person) and the topic, sothe studying is worth it. Dad actually didn't know that you could take an AP test and get college credit, so to him, the $86 for the test is easily worth it - especially if I do well. Spanish is increidbly easy. We finished learning a new tense and our strange video project is done and over with. Now we learn about culture, which is so much easier than vocab and verbs. The yearbook has been shipped off to the printer, so that won't take up my Wednesdays until next school year!
Seminary is awesome! Bro. Rubow is a great teacher and does a great job at inviting the spirit and helping us (at least me) understand the scriptures. We just finished James, and we're getting ready for our big SCRIPTURE MASTERY event on Saturday. If anyone has any ideas on how to get a bunch of sleepy teenagers to seminary on time, I'd appreciate those ideas!! We're supposed to start at 6:15, but we usually start with one or two people around 6:20.
Break was amazing - again look at the family blog for cool pix! We went to DisneyWorld! But on the way there we stopped at the home of the Kentucky Derby - Churchill Downs racetrack! It was gorgeous, huge, and absolutely amazing! Even if you don't like horse racing, I would definitely suggest going to visit to at least say that you've been there. I loved the stunt shows and animation exhibit at MGM Studios. Mom and I got SOAKED on Splash Mountain. The last day, we rented a wheelchair because I was exhausted and having stomach cramps, so we got to go to the front of a bunch of lines. GET A WHEELCHAIR when you go to Disney - it'll save so much time waiting in line! A giraffe stuck his head in a truck ahead of us on Safari at Animal Kingdom - adorable! And the fireworks were absolutely amazing everywhere! We managed to visit all eleven countries at Epcot and we went on Test Track twice. Each morning we woke at the crack of dawn to get to the parks early. The opening shows were really cute, and we did manage to aboid some of the longer lines. We took a monorail break during our visit to Magic Kingdom - we took on to the TTC and then hopped on the one to Epcot. We rode back and forth about three times. We were all rested, and it had AC so we cooled down, too. All in all, it was really fun, and the road trip was definitely worth it. Dad learned from some bad Super 8's over our summer trip and booked some really nice Holiday Inn and Comfort Inn places to stay. Thank you Daddy!
I think that's pretty much it! We're on a four day weekend right now - Good Friday we have off and Monday is an institute day. So we're all hanging out and cleaning the house and making easter cinnamon rolls - YUMMY!
There's a guy named Paul Cardall who is waiting a heart transplant. He's an LDS musician with a little girl. Please pray for him and his family!
Forgot to mention: I got glasses! and my license! And I finished Personal Progress and received my Young Women in Excellence Award from my wonderful Bishop, Daddy.
Love you all!
In January I celebrated my 16th birthday! I went and saw Bedtime Stories with my parents (awesome movie by the way) and I got my LICENSE!!! So now I drive to seminary alone. It's kind of nice to have some quiet time in the mornings.
We were able to correct some intestinal problems, and since then I've been feeling great, except a little tired. So the kidney people decided to get me some iron infusions and now I feel a whole lot less exhausted. It's a very nice feeling.
My dad got called to be the Bishop, so we see a little bit less of him now.
I ended first semester being sixth in my class 582 - whoo hoo! My goal was to be valedictorian, but I'll live with the top ten. Now I'm in probably the best/worst semester of my life: love global issues and I'm learning a ton about current events. Did you know there are actually pirates? family joke My English class is actually quite interesting, especiall since we just started rhetoric - sarcastic writing. Health is probably the easiest class ever. I really like creative writing, but our fiction unit is about to end. We did this really cool thing called a 55 word story - it's actually really hard to write a story in 55 words or less! I strongly dislike science, but at least we don't have to do anymore lab reports and I managed to bring my grade up. This is the first time in a long time that I have ever had an A+ in math - I give all the credit to my teacher and her amazingly organized notes that actually make sense. AP European History is fun, but we're racing to the finish since our AP Test is only 27 days away. That's only 27 days to study over 800 years of history. YIKES! But I love my teacher (who happens to be my global issues teacher and is an absolutely amazing person) and the topic, sothe studying is worth it. Dad actually didn't know that you could take an AP test and get college credit, so to him, the $86 for the test is easily worth it - especially if I do well. Spanish is increidbly easy. We finished learning a new tense and our strange video project is done and over with. Now we learn about culture, which is so much easier than vocab and verbs. The yearbook has been shipped off to the printer, so that won't take up my Wednesdays until next school year!
Seminary is awesome! Bro. Rubow is a great teacher and does a great job at inviting the spirit and helping us (at least me) understand the scriptures. We just finished James, and we're getting ready for our big SCRIPTURE MASTERY event on Saturday. If anyone has any ideas on how to get a bunch of sleepy teenagers to seminary on time, I'd appreciate those ideas!! We're supposed to start at 6:15, but we usually start with one or two people around 6:20.
Break was amazing - again look at the family blog for cool pix! We went to DisneyWorld! But on the way there we stopped at the home of the Kentucky Derby - Churchill Downs racetrack! It was gorgeous, huge, and absolutely amazing! Even if you don't like horse racing, I would definitely suggest going to visit to at least say that you've been there. I loved the stunt shows and animation exhibit at MGM Studios. Mom and I got SOAKED on Splash Mountain. The last day, we rented a wheelchair because I was exhausted and having stomach cramps, so we got to go to the front of a bunch of lines. GET A WHEELCHAIR when you go to Disney - it'll save so much time waiting in line! A giraffe stuck his head in a truck ahead of us on Safari at Animal Kingdom - adorable! And the fireworks were absolutely amazing everywhere! We managed to visit all eleven countries at Epcot and we went on Test Track twice. Each morning we woke at the crack of dawn to get to the parks early. The opening shows were really cute, and we did manage to aboid some of the longer lines. We took a monorail break during our visit to Magic Kingdom - we took on to the TTC and then hopped on the one to Epcot. We rode back and forth about three times. We were all rested, and it had AC so we cooled down, too. All in all, it was really fun, and the road trip was definitely worth it. Dad learned from some bad Super 8's over our summer trip and booked some really nice Holiday Inn and Comfort Inn places to stay. Thank you Daddy!
I think that's pretty much it! We're on a four day weekend right now - Good Friday we have off and Monday is an institute day. So we're all hanging out and cleaning the house and making easter cinnamon rolls - YUMMY!
There's a guy named Paul Cardall who is waiting a heart transplant. He's an LDS musician with a little girl. Please pray for him and his family!
Forgot to mention: I got glasses! and my license! And I finished Personal Progress and received my Young Women in Excellence Award from my wonderful Bishop, Daddy.
Love you all!
Saturday, March 29, 2008
Spring Break
So, it's been quite a while! I'm back in the swing of things at school, and I just started driver's ed. I actually have my first test this upcoming week, and then I can get my permit later next week! YAY! I'm honestly a bit nervous about driving, but it'll be fun!
Spring break was awesome - I went and saw College Road Trip with a friend and I finally saw the 2nd National Treasure! Both movies were excellent, and definitely worth the money! I just got an itchy nostril and watery eye thing that's driving me nuts and making me miserable! I spent three hours in a hot gym today to watch my three siblings compete in their age leve spelling bees. Nathan got out on the word gradual, Megan got out on drawer, and Rachel won first place in hers with indomitable! It was pretty exciting :-) Tonight is the Young Women's General Broadcast, so Mom, Rachel, and I are going to snuggle in Mom and Dad's bed with the laptop to watch it. For Easter, the four kids got Webkinz, and they may sound little kid-ish, but I love the game, and it's completely safe even though it's online. You never know what can happen by giving personal information on certain sites online. The snow is finally almost gone, and it's suppposed to get in the high 50s next week! Spring is finally coming!
School has been pretty fun. My Broadcast journalism class is a blast - we're just finishing up our latest project, "Person on the Street" where we went around the school interviewing random people with a certain question. I strongly dislike my geometry class, and my biology class is just getting boring. I love world history, but the class is kind of hard and I don't love the teacher. My English teacher is rather eccentric, and we're about to start Romeo and Juliet (yuck). The best part of the day is definitely lunch - my friends are so great and fun to be with! It's too bad we don't have more classes together. I love learning spanish, and it's a geat way to end the day, although I come home and start speaking spanish with mom and drive my siblings crazy! The best part of the first semester is that I managed to finally finish making up work, and I pulled off a 4.2 GPA which places me as #4 of my freshmen class! YAY! I hope my grades didn't slip in third quarter.
For Personal Progress - I'm thinking of creating an entertainment blog for teenagers. There's so much junk out in the world, and the blog would have ideas of clean movies, clean music and singers, clean TC shows, and other media forms that wouldn't have any bad stuff in them. The blog would give teenagers a reliable source (the reviews and ideas would come from other teenagers) to look for good, wholesome entertainment that doesn't leave any feelings of regret. If you have any ideas, let me know!
That's just about it! Happy Spring to everyone!
Spring break was awesome - I went and saw College Road Trip with a friend and I finally saw the 2nd National Treasure! Both movies were excellent, and definitely worth the money! I just got an itchy nostril and watery eye thing that's driving me nuts and making me miserable! I spent three hours in a hot gym today to watch my three siblings compete in their age leve spelling bees. Nathan got out on the word gradual, Megan got out on drawer, and Rachel won first place in hers with indomitable! It was pretty exciting :-) Tonight is the Young Women's General Broadcast, so Mom, Rachel, and I are going to snuggle in Mom and Dad's bed with the laptop to watch it. For Easter, the four kids got Webkinz, and they may sound little kid-ish, but I love the game, and it's completely safe even though it's online. You never know what can happen by giving personal information on certain sites online. The snow is finally almost gone, and it's suppposed to get in the high 50s next week! Spring is finally coming!
School has been pretty fun. My Broadcast journalism class is a blast - we're just finishing up our latest project, "Person on the Street" where we went around the school interviewing random people with a certain question. I strongly dislike my geometry class, and my biology class is just getting boring. I love world history, but the class is kind of hard and I don't love the teacher. My English teacher is rather eccentric, and we're about to start Romeo and Juliet (yuck). The best part of the day is definitely lunch - my friends are so great and fun to be with! It's too bad we don't have more classes together. I love learning spanish, and it's a geat way to end the day, although I come home and start speaking spanish with mom and drive my siblings crazy! The best part of the first semester is that I managed to finally finish making up work, and I pulled off a 4.2 GPA which places me as #4 of my freshmen class! YAY! I hope my grades didn't slip in third quarter.
For Personal Progress - I'm thinking of creating an entertainment blog for teenagers. There's so much junk out in the world, and the blog would have ideas of clean movies, clean music and singers, clean TC shows, and other media forms that wouldn't have any bad stuff in them. The blog would give teenagers a reliable source (the reviews and ideas would come from other teenagers) to look for good, wholesome entertainment that doesn't leave any feelings of regret. If you have any ideas, let me know!
That's just about it! Happy Spring to everyone!
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