Friday, July 31

This is Rachel posting again. Yesterday, Thursday, was a great day. Lauren went to try on wig options and found one that was really cute. She even played a game with me and Megan. However, then she was up half the night barfing. She had a really low blood pressure and her heart was beating extremely fast. In fact, her blood pressure was so low that our machine couldn't even get a reading. So, Dad took her to the hospital this morning. Mom thinks she was just dehydrated because she was throwing up gallons of loveliness. She is now in ICU where they are treating her for an infection that they aren't sure even exists. Her chemo lowers her white blood count so it makes it hard to fight infection. They are also giving her meds to help her heart pump better. They're also giving her fluids and she was feeling a bit better last time Mom checked. A closing remark from me: I get my mom for 16 more hours til she switches out my dad.

the end.

(we wish)

I'm HOME!!!

Finally - after two weeks in the hospital, I'm back home and it feels so good! Over the weekend it was pretty much just getting chemo drugs and managing nausea and pain and dealing with residents and fellows (never a pleasant experience). I was supposed to get home Sunday night, but one of the doctors who told us we would be going home overlooked the fact that I was supposed to get 12 hours of hydration after the drug. So I went home 24 hours later instead.
A nurse from home health came to give me a shot which is supposed to help boost my blood counts until the next cycle of drugs. I have to go back for some heart tests this and next week, but I don't have to have a scan for a while. So I've been hanging out at home for the past day and my mouth is still killing me - any ideas for helping mouthsores? I coated my braces with wax and that helped, but you have to take the wax out to eat which is such a pain. I've been forcing down as much as I can, but very few things sound tasty. All in all, I'm just zapped. I went to bed soon after we came home last night and then I took a shower this morning - it felt SO GOOD!! Be grateful for your own bathrooms and showers - they're amazing! I've been sleeping and watching movies most of the day and now I am updating this blog. And that's pretty much all that has happened.
Rachel is hilarious - I forgot how loud she can be! She was telling me all sorts of stories about yearbook camp (yes, there is such a thing) and wondering what would be preppy for her to wear for her marching band camp. The trumpet section is supposed to dress preppy so any ideas would be welcomed. Megan is also becoming a little louder and crazier - she must have found her voice once Rachel left. And Nathan is just as cute as ever! They've all been great about helping me out at home.
Thank you to everyone else who has been helping my family. We all appreciate the food, the transport, the care, etc. everything. I'm so grateful for all of your prayers in my behalf. I'll keep you updated as the days progress!

Sunday, July 26

This is Rachel posting becasue Lauren is feeling gross. Apparently, she threw up all night long and does not feel so great today. She keeps spacing out and is dizzy. Her blood pressure is really high and she feels achy all over. Hopefully she gets over all of it so she can come home tomorrow.

Hospital Photos

So here are the pictures I promised! These are just of the hospital. Someday I'll be putting up pictures of Girls Camp and other summer activities. If you want to see the picture bigger just click on it.

In the fancy ambulance-transport chair - those things are amazing!

On the way to the ambulance!

Acting weird - I pretended I was having a serious problem where I couldn't breathe.

Here are the transport people putting me into the ambulance.

Being weird again - I was acting freaked out about being stuck in the ambulance :)

Here's the security guard from the ambulance story!

My backside looked like this a few days ago: the white patches are the lidoderm patches that contain lidocaine to numb the area and the gray circles are hooked up to the TENS machine that gives little electrical impulses that feel like a massage for a while.

Lounging around in a chair - I got sick of the gowns so I've been wearing sweats a lot.

Some of the young men in my ward came to visit. It was fun to see them all! Thanks for coming by you guys - it helped bring a smile to my day!

The cookies are delicious - a big thank you to Dad's company!

The cute flowers from the young women - thank you so much!


How I try to feel about getting the chemo...


..how I REALLY feel about getting the chemo.

Hope you enjoyed the pictures! We'll have more to update you on tomorrow!

Update #3 - Day 1 of Chemo

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.

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!

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!