U of C Days 22 through 29

Sorry for the delay in posting. I returned to work this week and was swamped, so between that, going to the hospital and getting the girls ready to start school next week, it's been just crazy. In the early part of the week, Leo was still in pretty bad shape. Anyone that's come by to visit, understands what I mean. Leo was drugged most of the time, as he needed the nausea meds so that he would be able to keep his regular meds down. So he slept most of the time, but he just didn't have energy to do anything, even to just get up to use the restroom. He was still running a fever and his blood pressure was still fairly high. The doctors had determined that his other line needed to come out, as they felt as though that was the source of his infection. He was scheduled to have it out on Tuesday and the plan was to replace with another line. But early on Tuesday, the doctors changed their mind, as some of the specialists had determined that Leo has TTP, which is a complication of his transplant. Don't ask me what it stands for or exactly what it is, but basically his body was attacking it's own immune system. Obviously not a good thing. The treatment for this virus is additional steroid meds, but they didn't want to add more meds to his already over full plate. So what they decided to do is to remove a couple of the meds he was currently taking, as it was feeding the virus. They felt as though the danger of stopping those meds was greater than the danger of the TTP getting worse, so that's why that decision was made. They gave it 2 days. If by Thursday, he didn't start to turn around, they would have to think of plan B. Miraculously, on Wednesday morning, I received a call from Leo and he has started to feel better. He was talking and fever free. So I guess those doctors really do know what they're doing. Each day since then, he's been feeling stronger, so let's hope he's finally on his way up. His doctors feel as though the effects of the cord blood should happen about next week or so. Please keep your fingers and toes crossed for him that it does happen.

We still try not to leave Leo on his own as much as possible as he's still somewhat weak and if he over exerts himself, he has a risk of falling and if that happens and he hits himself somehow, it could be very dangerous due to his low platelet counts. So I'm sending extra thank you's to everyone that's come by to visit and even stay overnight. We really appreciate it!

Enjoy your weekends!

U of C Day 21

Today has been a tough day for Leo. He's been feeling horrible all day. He is fatigued, nauseous, coughing, and towards the end of the day, started to get a fever. As he is still at risk for another seizure, the doctors are keeping a very close eye on him. Earlier today, they too out his PICC line as they feel it has been in too long and may be the cause of infection. They decided to keep the central line that is in his chest in as they need the IV access for his meds and transfusions. The problem is, since he already has an infection in his blood stream, there is a risk that the infection will affect the other line as well. So earlier in the day, the hospital had some of their best phlebotomists come by to try to get a couple IV's into Leo. He is a very difficult stick. If they were to take out his central line, they needed at least 2 IV's in his arms to administer his meds. They were unable to get any, so they left the central line in. Later in the evening, he got a fever and the doctors are very concerned. They are hoping just because he had one unit of platelets and 2 units of blood today is the reason he got the fever, but if they determine that is not the case and they cannot control the fever, they will have to remove his central line tonight. If they still cannot get IV's into his arms, they will put another central line in on his left side instead of his right. The risk with doing that is that his platelets count is so low right now, that he has an extremely high risk of bleeding. So as I type this, we don't know yet what the doctors will decide to do. I will be sure to update later in the evening as things develop.

Thanks so much to Larry for coming by today to donate platelets. I know it's a huge time commitment and Leo and I really appreciate it. Thanks also to Vanessa and Karl and Patrick for coming by to visit. Although Leo didn't have much energy to talk with you guys, I had fun just hanging out and talking. It was a huge stress reliever for me. Thanks so much for being great friends. I will post more tonight if anything develops.

U of C Days 19 and 20

Leo has been in the ICU for the last 2 days, so that makes 3 days total. He was transferred out of the ICU back to the Oncology Transplant Unit today as he is fairly stable and the seizures haven't recurred. He is now taking anti-seizure medication to keep them at bay. The bleeding that they noticed in his head was small and based on the second scan they did, it already seems to be subsiding. So they don't think that any procedures will be necessary to treat the bleeding. He is just being monitored to make sure it doesn't happen again. His vision is still a bit fuzzy and doubled, but they neurologists aren't too worried about it as it seems to be getting better. He is still being seen by the neurologists, physical therapists (as he has been in bed the last few days and they want to make sure he's walking ok), infectious disease doctors and the usual oncologists, so there's quite a team of doctors coming in and out through the day. The infectious disease team seems to think the source of the infection is one of his 2 central lines, so they are recommending that they be removed and a new PICC line be put in. It still has to be approved by all others involved, so we'll see what they say. If they do it, it will be Friday this week. His blood counts still haven't come up yet, as his WBC's are still 0.1. His oncologists said for a double cord transplant like he's just had, it should be around day 20 that the counts start to come up. He is currently on day 12 after the transplant. So the next week will be crucial. Let's all hope for the best.

Thanks again to everyone for their prayers and good thoughts. He couldn't have made it this far without you!

U of C Day 18

Leo is still in the ICU. He is much better than he was yesterday and he is stable. The CT scan that they did yesterday showed that he did have some bleeding in his head, but it was not enough to warrant any procedure. Which is good news. They said that the bleed is small enough that it can be -re-absorbed on it's own. they did another scan today and preliminary reads on the scan indicate that the bleeding is not getting worse. Which is also good news. Leo's fever is gone and his blood pressure is stabilizing. He is starting to have some fuzzy and double vision though, so they are still keeping a close eye on him. If tonight is uneventful, they are saying that he may get transferred off of ICU. So we will see what tonight brings.

One good thing about being in ICU is that they allow kids on the unit, unlike the transplant unit. So after getting approval from the doctors, I was able to bring the girls to see Leo. This was a great spirit lifter for him as he hasn't seen them in person since he was admitted, which is going on three weeks. So he was so happy to see them. They all had to wear masks, gloves and gowns, but at least they got to see their daddy. They were being closely watched by the doctors to make sure they didn't trample Leo or have too much contact with him. So they only go to visit for about 10 minutes. But it's still 10 minutes he didn't have before.

They have started him on a clear liquid diet for now and will start phasing foods in again over the next couple days. He's still very tired, but feeling better. I will update you further tomorrow. Good night!

U of C Days 12 through 17: ICU

Most of this week was pretty uneventful until today. I was at home with the girls and got a call from one of Leo's doctors here at U of C. He told me that Leo had a seizure this morning and it lasted about a minute. He had a fever this morning and they think the seizure may have resulted from that, but it may have also resulted from one or some of his meds. There are some other more serious reasons that may have caused the seizure, so they are doing a bunch of tests on him now to rule that out. He still has his fever and now has a sore throat and productive cough. After discussing further with the nurse that was taking care of him at the time, she said he may have had 2 seizures, the first he was on his own and the second happened when she and the doctors were in the room, as he was laying in his bed unresponsive. He is stable now, just feeling like crap from all the drugs and his still uncontrolled blood pressure.

That's all I have for now. Hopefully we will get more details tomorrow. Hope you all enjoyed your weekend.

U of C Day 11

It's been a fairly uneventful day today. The only thing is that Leo's blood pressure is kind of high, they're monitoring his blood pressure constantly. The doctors are still deciding whether or not to start him on blood pressure medication, as they think the counts could be a side effect of a couple of his medications. Other than the blood pressure issues, Leo is doing ok. Still doesn't have much of an appetite and is easily fatigued. He still welcomes any visitors, as he is really starting to miss his friends and family, or you can IM him on MSN (leorivera25@hotmail.com) or Skype him with user ID bernadette-rivera.

Enjoy your week!

U of C Days 10 and 11

This weekend was pretty uneventful. They have started Leo on some of the meds that he used to take before, like neupogen to help increase his white blood cell count. So just like last time, that's the magic number that we need to wait to see increase. At this point, he's a 0.1, which is the same as he has been for the last couple months. Ideally, they want to see that number get closer to 3 or 4 before they will let him go home. Let's hope it won't take that long. He's feeling ok post transplant, just extremely tired, as is expected. But overall, he seems to be doing ok at this point. He's just sick of being here and misses the girls. We skype every night, but it's just not the same. So let's just all hope that the next couple weeks will pass quickly and that Leo will be home again soon. :)

So, now that the transplant is over, he's on some contact precautions. He can still have visitors (and totally welcomes them, btw), but they require you to wear gowns when you are in his room. As always, if you have any cough, cold or sniffle, please stay away. Also, there are no kids on the unit.

Hope you all had wonderful weekends! Happy Monday!

U of C Day 9: Transplant Day

All in all, the day went well. I got here early this morning with some breakfast for Leo, but all his meds have ruined his appetite and he hasn't been able to eat much at all. Originally, he was supposed to start his transplant at 10am, but due to scheduling problems, they did not start until 1pm. They brought out the first bag of cord blood cells and it's tiny, about a 3 inch square. It's really amazing how much a little bag can be so powerful. After they infused the first bag, Leo's blood pressure went dangerously high, so they had to call the doctor in to check on him. He advised him to take some blood pressure medication to bring it down, which they did immediately, but apparently, it made his blood pressure go way too low. There was a lot of chaos going on, as there were a couple nurses and a doctor in his room trying to regulate his blood pressure. Had it gone any lower than what it was, he may have had to be admitted to the ICU. Luckily, quick action on the staff's part, brought his pressure up to a safer level. All the while, Leo's head was throbbing painfully because of the drastic changes in his blood pressure.

After his pressure came up a bit, they were finally able to infuse the second bag of cells. That one went smoothly with no adverse reactions, so that's good. Right now, he's sleeping off the medications they gave him pre transplant.

According to the doctor, it should take about 2 weeks for the cells to kick in and his counts to start to recover. Let's hope that's the case and that we don't run into any complications. Thanks to everyone that sent prayers and good wishes our way today. Every little bit helps. Today is they start of Leo's recovery journey and let's hope this time will work out better.

Hope everyone enjoys their weekend. It's supposed to be a hot one in Chicago this weekend-be careful out there!

U of C Days 6 though 8

Leo finished up his rounds of chemo and radiation Wednesday. Thursday (today) was a day of rest for him and tomorrow is the transplant. Again, they're doing a double cord transplant. I believe they will infuse the first unit around 10 am and the second around noon or 1. I will be sure to keep you posted on his progress.

Thanks to Glenna, Patrick, Maricris, and Celeste for coming by to visit. Leo really appreciates it. Although he may have been really groggy at times (sorry Glenna!), he knows that you're there for him and it makes him feel better. I will be starting my leave from work tomorrow and will be off for 2 weeks, so will be at the hospital most of the time.

Please pray for Leo and keep him in your thoughts tomorrow as he undergoes his transplant. Thanks again!

U of C Days 3 through 5

Hope everyone had a great weekend. Ours was fairly uneventful, which is actually good. Leo started his chemo on Friday and was getting two doses each day. He isn't feeling horrible side effects yet, but based on our experience last time, it will not hit till about a week. He is starting to get a weird coating on the inside of his mouth which I remember from last time. He says it leaves a funny taste in his mouth and a somewhat oily feeling. Doesn't sound pleasant at all, nor does it look any better and it's making him lose his appetite to eat. So that is the worst of his symptoms so far. He's also getting these crazy hiccups that won't go away. Kinda funny at first, but then theyprevent him from sleeping, which is not good. Hopefully they will go away soon.

He started his first doses of TBI on Monday. First dose is at 9am and second at 5 pm. With transport and all the treatments take about 2 hours. He was a bit nervous yesterday morning, but after he did the first treatment, he said it was ok. A bit claustrophobic, but fine. Again, not feeling the side effects of this treatment either, but I suspect it will come around later this week or just after the transplant, which is scheduled for Friday.

They cancelled the ultrasound that I mentioned in the previous post. The elevated counts that they were concerned about normalled out, so they didn't see a need to do it anymore. One less thing to worry about.

Thanks so much to everyone that came by to visit this weekend and yesterday! Nalini, Arvin, Patrick, Allan, Vanessa, Karl and our parents. It really lifts Leo's spirits when he has visitors, so we really really appreciate it. At this point, I think knowing that our friends and family are there for us is the best form of healing for him. Thank you again.

Also, as people have been asking, the best way to get in touch with Leo is either by MSN messenger (leorivera25@hotmail.com) or via his Facebook account. He's actually been more active with the account I created for him. He posts status updates on what's going on at the hospital and the games help him pass the time (Mafia Wars! Hahaha....) Also, he's usually on Skype (user ID bernadette_rivera), so you can try that too. So if you're looking to get in touch with him, these ways are usually the best. If he doesn't recognize a number that comes up on his cell, he won't answer, so try these other ways instead.