Merry Christmas to All!

Just wanted to wish everyone a very merry Christmas!

Now that all the chaos is over, and I can't sleep on this Christmas morning, I wanted to send out my thank yous to everyone that made Leo's memorial such a success. I am so lucky to have such wonderful friends and family that were able to make everything go as Leo wanted it to. Some of you may know that Leo had me plan all the details of his funeral several months ago, so when he passed on Saturday, Celeste and Christine were there immediately to make everything happen just as he wanted it. After we finished business at the hospital, we spent the rest of Saturday and all of Sunday booking places, hammering out details, just doing everything so that Leo went out in style.

To the project management committee: Celeste and Christine-you guys are awesome. I know how exhausting it was and how difficult it was to plan such a sad event, but you got the ball rolling like no one else could.

To the pinoy snack committee: Patrick-what can I say? Everything was AWESOME! You really out did yourself and I can already tell that Jun is right there behind you patting you on the back for a job well done! All the pastries for both evenings of the wake were such a HUGE hit.

To the floral committee: Arvin-beautiful, just beautiful. Every last orchid and every last lily...just as Jun wanted it. The arrangements were beyond my expectation-thank you so much.

To the dessert committee: Octavio, Marissa, Fevin and Myleen. Everything came out perfect. I am still in awe of the beautiful Bears cake! I know that Leo was looking above with a huge "hell yeah!" for that cake. And all the other pastries were just as awesome-thank you for being such wonderful friends!

To the audio visual committee: Octavio and Fevin-Thanks for putting together the wonderful slideshow of photos that we showed for the three days. I still cry when I watch it. It was such a beautiful tribute to a wonderful person and I think that everyone that saw it felt the same way. Thanks also to you, Fevin, for your amazing negotiating and interviewing skills in getting the photographer and videographer. Those guys were awesome and now I know how a movie star feels! Thanks also for putting together the programs for the funeral. Good thing you don't sleep much....There are just not enough thank yous for what you've done for me. :)

To the thank you card committee: Sheryl-I LOVE, LOVE LOVE the cards you chose.

To the IT support committee: Andrew-thanks for making sure our wi-fi was at top performance so everyone could get all their things done. :)

To the posterboard committee: Marissa and Vanessa-wonderful job on the photos. I'm so lucky to have such crafting experts on my side, especially during a crafting emergency such as this one! The posterboards came out awesome!

And of course, thanks to everyone for attending the services and paying your last respects to my wonderful husband. I can't say it enough. Thank you, thank you, thank you!

I already have the photos from the wake and funeral. But there's over 600 of them, so I will go through and pick out my favorites to share. I'm also uploading the photo montage that Fevin and Octavio put together for those that weren't able to come to the services. It's a great collection of pictures of Leo with family and friends. It's about 30 minutes long.

Merry Christmas again to you all. It will not be a great Christmas for me, as I can already feel the emptiness of Leo being gone, but luckily I have my family and friends to help fill that void. Thank you all so much.

Details for the Wake and the Service

Thank you to everyone for keeping us in your thoughts and prayers.

Visitation will be at Willow Funeral Home:

Monday, December 21, 2009 5:00pm – 8:00pm
Tuesday, December 22, 2009 3:00pm – 8:00pm

Willow Funeral Home
1415 West Algonquin Road
Algonquin, Illinois 60102
847.458.1700

We will meet at Willow Funeral Home at 8:45am before heading over to the church for the funeral mass:

Wednesday, December 23, 2009 10:00am

St. Catherine of Siena Church
845 West Main Street
West Dundee, IL 60118
847-426-2217

There is a reception immediately following the services:

Wednesday, December 23, 2009

Biaggi’s Ristorante
1524 South Randall Road
Algonquin, Illinois 60102
847.658.5040

The fight is over.

Leo's fight with Leukemia ended this morning around 10am. The last week has been horrible for him. They were able to control the bleeding, but were not able to drain the fluid that was collecting in his lungs, so he was having a more and more difficult time breathing. He was going back and forth from the ICU whenever his heart rate would increase. On Friday morning, I got a call from one of the doctors on Leo's oncology team saying that his heart rate was really high again and his breathing was very labored. I made an attempt to rush to the hospital, but was stuck in downtown traffic. Thanks so much to Fevin for giving me the advice to ride on the shoulder with my hazards on, as this got me through the worst part of traffic. As I was waiting in traffic, his doctor called again and said they couldn't control his heart rate and breathing pattern, and he was estimating that Leo had 24 hours to live. He was about correct, as this was around noon on Friday.

We are so lucky to have such wonderful friends and family that showed up to the hospital that night. Leo was on the bi-pap machine but on some morphine to make him comfortable. So many friends and family came by that night to see Leo and have some final words with him. He was still responsive to people as they spoke inhis ear. His eyes still opened as they heard familiar voices. We took over the entire 6th floor at the hospital. Thank you so much to everyone and I know that Leo appreciated seeing everyone for one last time. He saw the girls and smiled at them all and the girls all said their goodbyes to their dad in their own way. Most stayed until around 2 that morning and a few of us stayed the night. Around 9:30 in the morning, his doctor spoke with me and said that the oxygen machine was not helping him anymore and we could take the mask off at anytime, but that he would be gone soon after. We stopped the machine around 9:40 and he was gone around 9:45. It was horribly difficult in ways I cannot explain, but Leo was ready to go and was just so exhausted. He is finally at peace.

We are making arrangements for a wake for this Monday and Tuesday and a funeral mass on Wednesday, but we're still confirming plans. I will post the arrangements at some point tomorrow. Thanks so much to everyone for your calls, texts and IM's. I can't respond to you all now at this point, but know that all your kind words will help me and the girls through this difficult time. I hope to see most of you in the next week to pay your final respects to my wonderful husband. Take care and I love you all.

Visitors

Just because so many people are asking, I just wanted to let you know that Leo can have visitors, but as before, if you are sick, or have any sort of cough, cold, sniffle or fever, please stay away. Also, if anyone is pregnant or might be pregnant, you cannot come to visit either as Leo has a virus that if pregnant women are exposed to it, might have some bad effects.

He is out of the ICU now, so the visiting rules are not as strict. Visiting hours are generally 9am-9pm. No kids, no flowers or fresh fruit.

Thanks again for all your support.

Out of ICU

Leo at U of C is like "Where's Waldo?", you can't keep track of him because he moves around so much! After all the craziness of yesterday, he has been fairly stable today and he was moved back to the oncology unit, but still constantly monitoring his heart rate and oxygen levels. He has to use the bi-pap machine for a couple hours each night so he doesn't have strain that much. He's been breathing today fine with just an oxygen mask and it's not nearly as labored as it was yesterday. They have increased his medication to help drain the fluid around his lungs and in his whole body and he's significantly less swollen than he was yesterday. Plus we've requested never to be assigned that nurse that upset him in the first place. So let's hope it's all good news from here on out.

Thanks to everyone that was praying and sharing your thoughts throughout the day. Sorry I couldn't get back to everyone. But I got all your messages and I am so lucky to have such wonderful friends and family. Thanks so much!

Back in the ICU

Leo has been having a difficult time breathing over the weekend, likely because of all the fluid that he's been getting (medications, platelets and blood). He is really swollen, but the bigger concern is that there is fluid collecting around his lungs that is making it very difficult for him to breathe. Throughout the day yesterday, I was having conversations with a lot of doctors to make sure there were aware that Leo does not want to be intubated. They will all follow his wishes, but were very concerned because he was really struggling to breathe. they had also started him yesterday on low doses of Morphine to help with his breathing.



So around 9pm last night, he was struggling an extra amount to breathe and his heart rate was in overdrive. It seemed to me to be triggered by this nurse that was being kind of snippy with him (really...if you don't like people, you shouldn't be working in a job where you help people all day. But that's just my thought.), but they could not control his heart rate and his oxygen levels were dropping quick. It was very scary, because in a matter of seconds, there were 4 doctors, 4 nurses and a chaplain that had rushed into the room to get things under control. Given the do not intubate instructions from us, they tried a bi-pap machine on him instead, which is a machine that is used by those with sleep apnea to help them breathe. It's basically like an oxygen mask on steroids. It forces the oxygen into his lungs so that he doesn't have to work so hard physically to breathe. The mask got his breathing under control after a little while, but his heart rate was still quite high. They did an EKG of his heart, an x-ray of his lungs and a million other things to see what was going on. They admitted him into the ICU immediately and he is here now until his breathing is under better control. I'm still waiting for the doctors this morning to see what they've found over night. I will be sure to keep you posted as I learn more.

Better

Today was a fairly uneventful day (thank God!!!!). Leo's counts are holding ok. His hemoglobin dropped a bit, but nothing crazy, so he needed 2 units of blood today. The doctors aren't too concerned about the drop and they think the bleed has been controlled pretty well. Leo is pretty swollen from all the fluids he's getting and they have at least allowed him to start drinking water today, which is good. They are going to start him on some IV nutrition in the next couple days to help bring his strength up. They can't do it right now because he doesn't have enough IV points. By the way, he's got the three IV's in his central line, 2 in his arm and one in his neck. And that's not enough. Amazing. Just goes to show really how much medication he is on. He is still not taking any of his pills in fear of irritating anything, so they're just giving him anything they can via IV.

The best news of today was that the girls were able to see Leo in the hospital. U of C has a VERY strict policy that they've implemented form his last stay that no kids under 18 are allowed to visit patients. But I think that since Leo's case was deemed fairly urgent, the doctors made an exception to let the girls see him. So they hung out there most of the afternoon. He slept through some of it, but I know that he truly enjoyed having them there and just holding their hands and hearing their voices. I'm glad they had that opportunity, since I don't think they will let the girls come back. So it was a good day.

Anyway, hope everyone enjoyed their weekends. Leo's out of the ICU and I'll take that as a success. Let's hope it's not much longer after this. :)

ICU Day 3

Sorry I couldn't post sooner. There's just been so much that's happened the last couple days. So when they did the endoscopy on Friday, they confirmed there was indeed internal bleeding, but there was so much blood that had already pooled in his stomach area that the doctors couldn't tell exactly where the blood was coming from. So there was nothing they could do to stop the bleeding, since they couldn't tell where it was coming from. After the procedure, he threw up again and continued to have bloody stools. The transfusions continued. I think the grand total for the day was 8 blood units and 8 platelets. But as the day went on, his counts were still not recovering. They were actually all dropping. Since Leo was being pumped with so many fluids, he has become very swollen and is having a very difficult time breathing and talking. Since his counts continued to drop, something else had to be done. Around 9pm on Friday, they took Leo to have another procedure where they make a small incision towards the top of his leg and inject a dye that was supposed to show where the bleeding was. They couldn't exactly determine where the bleeding was happening, but we able to place clips in various areas around his stomach in hopes that this would stop the bleeding. He was in this procedure for about 4 hours, so it was 1am by the time he got back to the ICU. After the procedure, he vomit blood again and was even more short of breath. But since the color of the blood seemed like old blood rather than bright red, that indicated that it was old blood that was already there, rather than a new active bleed. Leo was able to maintain his counts throughout the night with only a couple platelet transfusions and no red blood cell transfusions, which was good news. Through most of Saturday, he was able to keep his white blood cell count at 5.5, his platelet count was in the upper 30's and 40's and his hemoglobin count was 10.5. Since he was able to maintain his counts, the doctors decided to release him from ICU and admit him to the oncology unit, not on the transplant side, meaning that the girls will be able to visit him sometime soon.

So maybe that was more information than you needed to know, but it's what's been going on the past couple days. Thanks so much to Celeste, Glenna, Allan, Griselda and Patrick for coming by to visit today. It really means a lot to Leo knowing that he's got such great family and friends that are there to support him when he is at his lowest. Thanks so much. He can take visitors now, but as always, not if you're sick, coughing, sneezing or sniffling. Thanks!

Bleeding

Yesterday was a really tough day. They have transfused 6 units of blood and 6 units of platelets and his counts are still not holding. He is still vomiting blood and has bloody stools, so that means that there's still an active bleed going on somewhere inside him. The needed to do the endoscopy yesterday, but since his platelets were do low, they didn't want to risk the procedure. As a precautionary measure, they put an IV into his neck because all his otherIV's (the three in in central line and the one in his arm) are being occupied. He didn't want the IV in his neck, but at this point, I think it's essential. Overnight, since he lost so much blood, they decided to do the endoscopy this morning (they're actually doing it as I type this) despite the low platelet count. They are hoping to find the source of the bleeding and stop it the best they can. They just started the procedure, so I will be sure to keep you all updated as things develop.

Prayers please.

ICU

This morning, Leo threw up a whole lot of blood and they brought him in to the ICU. Their fear is that the bleeding they corrected last week has returned, but at this point, they are just trying to stabilize him since all his counts dropped as well. He is getting 4 units of platelets and 4 units of blood today to replenish him. They are trying to get his platelets high enough so that they can do another endoscopy like they did last week to see what's going on in there.

He'll likely be here at least a few days. I will keep you posted.

Good and Bad

We'll do the good news first. Leo's counts have been increasing pretty well the last couple days. As of this evening, his WBC is at 10.5, which he hasn't seen in FOREVER. He hasn't needed any blood transfusions, as his hemoglobin count has been maintained pretty well. He' still getting platelets, but not nearly as frequently as he was the past week.

Ok-now bad news. Leo fell today and hit his head pretty hard. I think there's actually a dent in the wall in the bathroom. He was immediately taken for a CT scan and they saw something different on the scan that was not previously there, so they're worried there might be some internal bleeding. They are going to re-do the scan tomorrow morning to see how it develops, but are giving him extra platelets today in the event there is some bleeding. Since his fall, he's been feeling extremely dizzy and is being closely monitored. He's exceptionally fatigued after the fall and can no longer get up from his bed, so is requiring much more assistance from the nurses. So we will have to see what happens over the next couple days.

Thanks to everyone that celebrated Claudine's 4th birthday with me this weekend. It was tough for her to have to celebrate her birthday without her dad there, but she still had a great time. :)

Bleeding Stopped

Just wanted to post a quick update that Leo had the same procedure today where they insert a camera down his throat to have a look around. The good news is that the bleeding has stopped. It seems as though the bleeding was coming from his stomach. But what's important is that it's stopped now.

Now the doctors just have to deal with the colon infection and sinus infection. Updates to follow.

Updates

Hi everyone-sorry it's taken a while to update. I feel badly when so many people are asking for updates and I can't talk to each of you personally. Thanks first of all to everyone that's been asking how Leo's doing and showing their concern. We do appreciate it, just don't always have the chance to say it to each of you.

So a lot has happened since Leo was admitted on Friday. Most of the weekend was spent stabilizing Leo as his blood pressure when he came in was dangerously low. I knew it was bad on Friday morning when Leo told me that he needed to be admitted. But he's been feeling better since he's been in. Still not spectacular, since he still gets quite dizzy and is very unstable. So on Sunday, one of the ENT's came in a stuck a camera down Leo's nose, as the sinusitis that he was diagnosed with a couple weeks ago has not subsided. (the following might be TMI, so skip forward a couple sentences if you're easily grossed out) They found a HUGE, ummmmm growth (that's the best way I could describe bugar) that was bloody and crusty and basically trying to set up a permanent home on the inside of Leo's nose. I was mesmerized watching the video. I swear, the thing was almost the size of my pinky. It was really gross. So after about 5 different tools were used, the doctor finally got it out and Leo's been breathing much better since. That was probably the only "good" thing that happened since our stay here.

So today, Leo had a procedure to stick a camera down his throat to see what's going on in his stomach and why he's having so many issues. They found some internal bleeding and had to seal those points off to try to stop the bleeding. They don't know exactly where the bleeding was coming from, but they think they were able to stop it. He is actually going to have the same procedure tomorrow so they can make sure that the bleeding was stopped and determine the source of the bleeding. This bleeding is the reason that the blood transfusions he's been getting have not been holding. When he came in, they gave him 4 units of blood and have been giving him a couple units each day, but his counts haven't been holding. In addition to the bleeding, Leo has tested positive for a colon infection, which we were told is likely from the string of anti-biotics that he's taking. So they have to switch up his meds a bit to help treat that. Finally, other tests they performed showed that his sinusitis has gotten worse from what it was just a couple weeks ago. This would explain the pressure and dizziness that he's been feeling. So right now, it seems like all these conditions are snowballing and the team here at the hospital is trying to attack each ailment as it comes. The other good piece of news is that despite all this, Leo's white blood count has gone up to 4.0, which is great considering everything that's happening. So we'll take that piece of good news.

I guess that's about it for now (that's more than enough if you ask me). I will update tomorrow as well when the results of his tests come in. Thanks again to everyone for their prayers and support. We love you guys!

Back at the Resort

Leo was admitted at U of C earlier today. He's been feeling exceptionally crappy this past week and the last couple days were really tough. He hasn't been able to keep anything down, even his Ensure. He's been vomiting quite a bit and has been experiencing quite a bit of dizziness. We knew he had to come in. So we called his doctor earlier and she got him a room. As hard as we've tried to keep him out of the hospital, we know he needs to be here right now until he stabilizes a bit and the doctors can figure out what's going on. Today, they have a bunch of gastro intestinal specialists looking at him. Hopefully they can get to the bottom of things.

Please send some prayers our way today. Thanks. I will keep you posted as things develop.

Getting better, slowly

Sorry I haven't blogged in a while. Since Leo's birthday, it's been a bit of a rollercoaster for him. He still had some nagging bug that was keeping his counts down to 3.1 or so, and it was very frustrating for us all. He's been coughing like crazy, but they did a scan and his lungs are clear, so they think he may just have a sinus infection of sorts. Given that he's already on several anti-biotics, they want to re-evaluate his meds to see if maybe there's something they can give him that would attack the sinus infection directly. Good news is, just this past Monday, his WBC went up to 4.9! Let's hope that count will stick and continue to rise. He also had another biopsy earlier this week, so the doctors can see what's going on in his marrow. We should get those results by next week.
The biggest problem is getting Leo to eat. He's pretty much not been eating for months. This week, he's trying little things here and there which is way better than the ensure a day diet he was on since back he was in the hospital. We just have to find the right foods for him to take.

Other than that, he's kept fever free and just continues to see his doctors every other day. So let's pray that things continue to get better.

Also, I am going to be scheduling a bunch of Donor Drives in the next month. If you are interested in volunteering this holiday season, please let me know as we will need a lot of extra hands. Also, if your church or organization would welcome a drive, please let me know and we can coordinate.

Happy Birthday Leo!

Most of you already know, but Leo's birthday is coming up this Sunday (10/25). It's been such a crazy year since he turned 40 last year and we had to cancel our family trip to Disneyland because he was hospitalized, but we're here. He's doing better, not great, but I'll take better. I just keep hoping that his counts continue to go up and that he doesn't pick up any infection or sickness. It will be extra difficult now with the colder weather coming up and all this Swine Flu scare. What's important is that he is at home here with us and getting better. I cannot wait for him to make a full recovery so that our life can get back to semi-normal. It's been difficult, but with the support of friends and family, Leo has fought to get out of the hospital and get better. The girls are so happy to have him at home, even though he can't play with them like they're used to. Claudine has been telling her teachers at school that she is so happy that her daddy is home. She says, even though he just stays in the bedroom and rests, I can go there and talk to him. When I hear stuff like that, I really know how important it is to the kids that Leo be home.

If you want to get hold of Leo on his birthday, he doesn't really have his cell on him much, but if you message him through Facebook or send him an email at leorivera25@yahoo.com , that would probably be best. Have a great weekend everyone!

Detour

Leo has been doing really well. As of last Friday, his WBC went up to 5.6! Over the weekend, though, he was feeling exceptionally weak and could barely get out of bed. When he went to his usual appointment at U of C on Monday, they almost admitted him because his blood pressure was so low. In addition, his WBC had dropped to 3.1. Luckily, his pressure came up a bit and he had no fever, so they let him go home. They ran some blood tests on him to make sure he doesn't have some kind of bug, but we haven't heard back form those yet.

Yesterday at Sherman, he was better and his WBC is creeping back up, and was at 4.2. So we're hoping the episode on Monday was just a little detour and things will continue to go up after this.

Leo's birthday is this Sunday and we were thinking of having a gathering of friends, but since he's not feeling great, we'll postpone to another time when he will be able to enjoy everyone's company.

There is a donor drive today at NIU in Dekalb if anyone is in the area and has not been able to register. I've emailed the details to my regular distribution list, but if you need them, please contact me!

Have a great day!

5.0!!!

More great news today! Leo's WBC is up to 5.0! What's important is that the doctor has also requested that he stop his neupogen injections, which are supposed to help him produce more WBC. So that pretty much means that he is increasing his counts on his own! This is so exciting-I can't even express it properly on this blog. I just feel like we kept getting bad news after bad news and then this week, it has totally turned around! More good karma everyone!

Have a wonderful rest of the week! :)

4.1 !!!!!!

You read right! Leo was at U of C today for his regular appointment and transfusion and his WBC is up to 4.1!!! The nurses are doctors were all so surprised! This is the good news that we've wanted and needed for so long! Originally, the doctors said around 23-30 days is the magic time for the WBC count to start to go up, so when Leo had hit the 60 day mark and there was not yet any improvement, the outlook wasn't looking good. Now that he's past the 70 day mark, I don't think a jump in his WBC was really what everyone was expecting, but here it is! Science is definitely powerful, but I'm telling you, there's something beyond that. Just the comfort of Leo being home has helped him to heal and recover better and we couldn't be more excited about this development! Let's hope this is the start of a whole lot of good news!

I also want to send another thank you to everyone that participated in the Light the Night walk in support of team Hope4Leo! Thank you to everyone that walked with the team yesterday-it was cold, but so worth it! It was so much fun and I will certainly lead another Hope4Leo team next year! A HUGE thank you to everyone that donated funds to the team! This was the first year I joined the walk and through everyone's generosity, Hope4Leo was the third top fundraising team at the walk this year! Thank you all for your kindness-although you were not there with us in the 40 degree weather walking (brrrrrrrrrrrrr), we felt your support there as our teeth chattered the whole 2 miles! Leo is totally overwhelmed with everyone's kindness and sacrifice....I think the success of team Hope4Leo has contributed to Leo's recovery!

I hope to post even more good news soon-it will be a great week! :)

Light the Night Walk - October 11th - Glenview

Hi everyone-many of you know that I have created a Hope4Leo team for the Light the Night walk coming up this October 11th. The walk is to fund the effort of the Leukemia and Lymphoma Society that is a great group that provides assistance to families like ours that suffer from blood cancer. To those that have already made a donation or joined the Hope4Leo team, thank you! If you're interested in making a donation or joining our team and walking together to raise awareness of this organization, please visit www.lightthenight.org and at the top, search either for my name, Bernadette Rivera, or our team name Hope4Leo and follow the instructions for donating or joining the team. It would be great if we could get a big group together to show Leo that we're all standing behind him and supporting him though this difficult time.

Join us!

U of C through day 63

63 days. Amazing. Leo has been in the hospital over 2 months. His doctors requested to do another biopsy on his last Friday because they wanted to see how the cord blood cells were developing. We got the results yesterday and it was not good. There were no cells remaining from either of the cord bloods that were given to him. At the last biopsy a couple weeks ago, they saw at least a few cells from one of the cords. Now there are none. Because of this, his doctors have determined that the transplant was a failure. At this point, they don't have an alternative plan in place because honestly, they didn't think Leo would make it this far. They have bounced around several ideas, including trying another transplant with his mom's cells, trying another cord blood transplant, or they have started to talk about testing the girls to see if any of them can be potential donors. They just aren't sure at this point what to do.

The good news is, they are letting Leo go home today and surprisingly with no IV's, all oral medications. He is still very weak and his legs are extremely swollen, but he is glad to be going home and being in his own bed. The other good news is that they didn't see any cancer cells in his marrow, which is great.

Leo's doctors think he may be home for a couple weeks or so until they get another plan in place. I will be sure to keep everyone updated as information develops.

Take care!

U of C Days 37 to 45

Apologies again for waiting so long in between posts. Leo is feeling better. He is walking the halls and sitting up much more now than he has been since the seizures. But his counts haven't come up. They have actually gone down and then come up slightly again. Last I posted, he was at 0.5 for his white blood cell count. He went as low as 0.2 a few days ago then back to 0.4 today. His doctors havemade it pretty clear that they're not going to let him go home until those counts come up a bit. He's still been getting a bunch of transfusions, both platelets and blood, so that pretty much the same as it has been.

Last Tuesday, Leo had a bone marrow biopsy and the good news is that they are seeing healthy red blood cells that are not his in the marrow. That indicates that the cells from the cord blood are starting to produce in his marrow. They infused 2 cord blood units and they are only seeing the cells from one of them, which means that likely his body didn't take the cells from the 2nd unit of cord blood. The cells that they're seeing are cancer free, which is great news, but there are very few of the cells, which they're disappointed about, but not totally discouraged. They have further tests coming in tomorrow or Tuesday that will give us more information on what's going on, but for now, the doctors want him to stay in the hospital until those WBC counts come up a bit more. The other piece of good news that we got is that his doctors recognize how much he misses the girls and have allowed them to come visit. Of course, they cannot be sick and they have to gown and mask up for the duration of the visit, but the doctors have written a note saying it is ok. We just have to be very careful because they are all going to daycare/school now and are exposed to many other kids and germs.

The ball park estimate the doctors gave on his potential release was sometime in October. So we will see how that goes. Thanks to everyone that has come by to visit. Leo really appreciates it and is so glad to see friends and family and to just chit chat for a while. Have a great week!

U of C Days 30 through 36

Sorry I haven't posted much in the past week. Its been crazy since I've been back to work as we're trying to get the federal return out the door. So between that, and the girls starting school and daycare this week and the hospital, I haven't had much time for anything. Leo is feeling better. But his counts haven't come up much. His WBC has come up slightly he is now at 0.5 which is still horribly low, but he was at less that 0.1 for months, so any little bit is an improvement. Hopefully the counts will start to come up soon, as that's they only way they'll consider letting him go home. He's much stronger than he was in the last couple weeks. He can now get up on his own to walk around or just go to the bathroom, so that's a huge deal.

Leo hasn't eaten in weeks and the doctors are a bit concerned. It's not that he doesn't try. He will try to eat something and it will come right back up. So he just hasn't eaten. So on Friday, his doctors added Marinol to his medicine buffet. What's marinol you say? Prescription marijuana. NICE!!!!! I hear it's all the rage. Hahahah...but the doctor's exact words were that he was going to start Leo on this Marinol so that he will "get the munchies" and hopefully start eating again. Hahahahaha.....He's been taking it for 2 days now and hasn't had any of the "munchie" side effects. So we will see how effective it is. :)

Leo's had a lot of visitors in the last week and I was to thank everyone that's taken time out of their schedule to come by. Especially to everyone at MTG. It really means a lot to Leo when people come by to visit and just appreciates the company and being able to talk to people other than his doctors and nurses. So if anyone else was thinking of visiting, please do so. Just make sure you're not sick. Thanks in advance.
Leo and I celebrated our 7 year wedding anniversary last Sunday. Obviously not the most ideal place to be celebrating, but we had a nice day just hanging out and watching our wedding video. We've been through so much in the last 7 years, but I think it has only made us stronger. Obviously, there's things I wish had turned out differently, but I think we've done our best to deal with what we were given. Without the great family and friends that we have, it would have been so much more difficult. Thank you all so much!

I hope everyone enjoys the long holiday weekend!

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.

U of C Day 2

Pretty slow day today. Leo was still pretty groggy this morning as an after effect of the drugs from yesterday. He doesn't have much of an appetite today and I suspect it will not get much better in the coming week. He started his chemo today, but from our experience last time, he won't really feel the effects of that for a few days.

There was a bit of an issue earlier today when a transporter came to pick Leo up for an ultrasound that he wasn't aware of. As you can imagine, Leo's not really the type to just let anyone do whatever to him whenever they want. So he questioned what he was getting an ultrasound for and why. they said that he needed an ultrasound of his kidneys. The nurse told him that they were looking into the kidney failure that was reported. Ummmm....what kidney failure? It's never been an issue to date and the doctors have never said anything about it so Leo was quite irritated thinking that either 1. there was something the doctors were hiding from him or 2. a mistake was made. Luckily (well not for the nurse) it was a mistake in his chart. He does not have kidney failure. He was indeed supposed to have the ultrasound but that was just because one of his counts were a bit elevated. Kind of a big difference from kidney failure. So that was straightened out.

Other than that, he's doing ok. Have a great night and enjoy your weekend!

U of C Day 1 (take two)

It was a long day today. Leo and I got to the hospital at 8 this morning as the plan was to give him a few units of platelets to bring up his counts. His counts needed to be about 75,000 to reduce the risk of bleeding when the put the Hickman line in. His first platelet count in the morning was 20,000 which is really high for him, but good, as it meant the unit he got yesterday was holding pretty well. So they gave him one unit and took his counts again. They only went up 7,000. Another unit of platelets and his count actually went down to 26,000. So now the doctors were confused, as his hemoglobin count was going down as well. He had no fevers, no bleeding and fluids were running through his system OK, so at this point, we still don't know what is going on with his counts. Since they could not get his platelet counts up, they could not insert his Hickman line, as the risk of bleeding was too high. In lieu of that, they put in a temporary line that they can still administer the chemo meds and other meds through, but cannot stay in long term. But it will serve the purposes that he needs for now.



So after the line was inserted, Leo was finally admitted to his room in the transplant unit. He is still on schedule tomorrow to begin his chemo, which will run through the weekend and theTBI will start on Monday. He is in his room now and just resting as he was pretty drugged for the line insertion.

I just created another Skype account as I installed it on the laptop that Leo will have here at the hospital. I don't have a camera yet, but just so you have it, our ID is bernadette_rivera.

Have a great evening and please say an extra prayer tonight for Leo. :)

Getting closer

Leo and I spent most of today at U of C discussing the TBI procedure, side effects, long term effects, etc. they also had to do a simulation of the procedure, where they take measurements of the body in order to ensure he gets the right doses of radiation and that it is evenly distributed throughout. His TBI regimen will coincide with the chemo regimen (sorry, I misunderstood before and thought he was no longer getting chemo) and everything will start this Friday and his transplant is scheduled for next Friday, August 7th. the next couple weeks will be very difficult on his body, as the chemo and TBI wipe out all his blood counts (the little he has) and he has to deal with the nausea and fatigue that will result from both procedures happening at the same time. I'm sure by the time her gets to the transplant date, he will be exhausted, but hopefully it will be the start of his successful recovery.

I'll be sure to post daily when he starts his stay this Thursday with what's going on. Thanks again for the continued support and prayers. We need them more than ever now! Thanks!

Thanks

Leo will be admitted on Thursday to start his TBI and undergo his transplant. We had an enjoyable weekend with family and friends just hanging out and having fun. It's times like this when you see how the people in your life are there with you every step of the way that you realize how lucky you are to have them. Without their support, I cannot imagine how much more difficult all of this would have been for both Leo and I. So if I haven't said it enough, THANK YOU everyone for what you do for us!

A special thank you to Amabel for coordinating the drive at Forest Glen Preserve this weekend. What a wonderful turnout! 32 new donors on the registry! That's awesome! I am so grateful that our paths have crossed as you have been such a blessing in our lives! Thanks to everyone that turned out for that!

As for our schedule this week, Leo is at U of C today and is starting some pre-meds for his procedures later this week. He's definitely going in on Thursday, so I will be sure to keep everyone posted on what's going on. Take care!

It's back

Sorry I haven't posted in a while. Leo is not in the hospital yet. He will be admitted next Thursday. When he was at his regular doctor's appointment last Monday, he was told that one of the tests he previously took had a conflicting result, so he had to have another biopsy. When those results came back, it was confirmed that the cancer has returned. They saw it in 60% of his cells. As such, they have had to change his treatment plan to a more aggressive one. He will no longer receive the 10 days of chemo that was originally planned. He will undergo what is called Total Body Irradiation(TBI) and the doctors feel as though this high dose of radiation will be able to clear the cancer completely from his system. But the radiation will clear both the bad and good cells, which is what will put Leo at risk, as it will wipe his system out to ground zero again. From what I've discussed and read online, the side effects of TBI are more severe from chemo, so this will be very difficult for Leo, especially since his counts are already depleted. So please say several prayers for some extra strength for him.

After the TBI regimen, which will happen 3 times a day for 3 days, they will attempt the double cord transplant. Since they still haven't found a full match for him, they will infuse 2 units of cord blood in hopes that it will do the trick. We can only hope at this point that second time's a charm.

That's all I have for now. Prayers please and I will keep you posted as things develop. Have a great evening!

Also, if there are some out there that have not yet registered to become a marrow donor, there is a drive being held this weekend. Leo's doctors are always looking for his match. To date, there still is not one available. This would be the ideal cure to his disease. Since he doesn't have a full match, they are resorting to cord blood and the rate of success is not as good. Please, please, please, if you haven't registered yet, please try to do so. You COULD be the one to save a life...

Details on the drive:

Saturday, July 25
11:00am – Sunset
Forest Glen Forest Preserve
½ milewest of Cicero & Peterson St.
near the Metra Station

Please stop by if you have the chance!

Take 2

We got news last week that the doctors are pretty convinced that the first transplant didn't work and they want to take Leo into the hospital again to try the transplant again. He has been feeling OK lately, but is still very transfusion dependent and his counts just won't budge. As he still hasn't found a match, they will just be using cord blood this time for the transplant. The procedure is otherwise the same as it was last March. He will start with 6 or so days of chemo to basically "reset" his body. Then after a couple days of rest, they will attempt the transplant again. As of today, they anticipate to admit him next week, start his chemo, then do the transplant the week after. They've already told us that the recovery this time around will be more difficult and will take longer than the first time, as he is weaker now and his counts are already low. But we are hoping for the best and hopefully second time's a charm.

He will likely be in the hospital for about a month or so depending on how his body takes the transplant. Same as last time, he can have visitors, but no kids and don't even think of it if you are sick at all. He will be needing platelets again, so anyone that is able to come to U of C to donate platelets will be greatly appreciated.

I will be posting more regularly to keep everyone posted. Thanks again to everyone for their prayers and well wishes!

Back home!

Thank goodness! The doctors released Leo from the hospital today with a whole lot of new meds, but feeling much better. He came home just in time to enjoy the long weekend with the girls. :) His counts are still kinda low, but they did give him some platelets "for the road" so hopefully he's be good through the weekend. They recommended that maybe we try to get to the ER on Saturday just so they can check his levels in case he needs a transfusion. The doctors are speculating that the case for the sores and/or the eventual infection may have been from something he ate. So they wanted to make sure he stuck to a strict neutropenic diet, meaning no raw fruits or veggies until his counts get a bit higher.

Hope everyone enjoys their holiday weekend. Our goal for the next few weeks is to stay hospital free-whis us luck!

Still here

Just wanted to keep you posted on Leo's progress. He's feeling better, and the doctors have determined it was a bacterial infection of sorts that caused the inflammation in his tongue. He hasn't picked up any fevers which is really good. The swelling has come down significantly since this weekend and he can talk again and is eating fine. They treated him with a whole bunch of antibiotics and steroids to bring the swelling down and it worked well. I'm hoping he will be home by the long weekend, but it's all in the doctors' hands at this point.

His blood counts have not come up at all. His WBC is still at 0.2 and the other counts have been pretty low as well. He has needed several transfusions over the last few days. The doctors have started to discuss that they may need to infuse more cells into his system if his counts don't begin to recover soon, but they haven't made it clear as to whether it would be his mom's cells again, or the cord blood, or if we'll start looking for a full match again. This is still in the preliminary stages, so as we hear more I will let you know as well.

As some people have been asking, I just wanted to let you know that it's ok to visit Leo in the hospital, but obviously not if you have any kind of sickness in your system. Kids are ok to visit too as he is not on the isolation side of the unit.

I will let you know if anything else comes up. But for now lets just keep our fingers crossed that he can go home soon and stay out of the hospital for a while! :)

Back again...

We didn't even stay out for a week. Leo was released last Monday and was doing ok at home, but then on Wednesday night, he started to get sores on his tongue that his doctors said were a side effect of his medications. Then on Friday night, they started to become really painful and Leo wasn't able to eat. Food would make things worse. On Saturday, the pain become even worse and his tongue started to swell to the point where he couldn't talk anymore. Early Sunday morning, the pain became unbearable and the swelling so severe that it was obstructing his breathing, so we went to the ER around 4am. After several hours there, the swelling was still terrible and the strep test and CT scan were both negative. At that point, the doctors decided it would be in his best interest to be admitted at U of C. So we are here now and they are still trying to determine what's causing the swelling. I will be sure to update you with his status as it develops.

My deepest apologies to my family and friends that were supposed to come over to our house today for a bbq. It would have been a perfect day, except for these events. We will make it up to you!

Mouth Sores

Leo's been getting the mouth sores from hell. Apparently it's a side effect of the medication that he's taking, but he says the pain is so bad sometimes that it feels as though it resonated through his entire body. Luckily, he went to the hospital today for his regular checks and the nurses were able to give him a medicated mouthwash that helps to numb the pain so it's a bit easier to deal with. Hopefully it will help.

Other than that, he's doing ok. Still getting transfusions Monday, Wednesday and Friday. Today he got 2 units of blood. His WBC still hasn't come up, so we're hoping that will turn around soon.
That's really all I have to report, but I guess no news in this case is good news, right? I hope you all enjoy your weekends! Take care!

Home

Leo was released last night and is now at home. After removing his central line and having an uneventful (no fever) weekend, they inserted his new PICC line in his arm and let him on his way. He has a couple new medications and has to administer IV antibiotics twice daily for the next 4 weeks, but we'll take it. He's feeling pretty good and his platelet and hemoglobin counts seem to be maintaining fairly well. His white cell count, though is still quite low at 0.2. So at this point they will just continue to monitor him. He is back to U of C visits 3 times a week at least for this week, then depending on how he does, he can go back to just once a week and twice in Elgin.

Thanks again to everyone that has followed the blog and supported us these past several months. Without such great family and friends, I don't know how we would manage. Have a wonderful week!

Line is out

A few developments to update on from the last couple days. They pulled out his Hickman Line last night as they were quite certain that was causing the infection in his blood. The problem we had is that his platelets have been horribly stubborn and despite multiple transfusions, they couldn't get his levels as high as they wanted them (50,000). The highest he got was 37,000, so they finally decided to do it anyway, but under close supervision, as he ran a high risk of bleeding due to the low counts. The line came out successfully and now he has to be on antibiotics for 3 days and be fever free before they can put in his new access line, called a PICC Line. This line will come out of his arm (instead of his chest) and is a less invasive procedure, so there isn't as much concern regarding his low platelet counts. At the earliest, they will put this line in Monday next week. He needs to have a line because he is still very transfusion dependent and will be going home with quite a few antibiotics that need to be administered through the line.

The preliminary results of his bone marrow biopsy came in today as well. The good news is that the leukemia has not returned. The bad news is that they didn't see any regular cells forming in the marrow, which is what is supposed to happen as a result of the transplant. I guess when they did a biopsy about a month out from his transplant, they saw a few cells starting to form and now they saw none. They said this could likely be from this most recent infection. It may have killed off whatever few cells his body had created. So for now, they just have to focus on getting the infection under control and hope that the cord blood will start to produce cells again.

Leo is feeling really good, which makes it even harder that the doctors want to keep him in the hospital through Father's Day weekend. Luckily, the girls can come visit him since they are not sick, so we will be spending the day there. At the earliest, he will go home early next week, but that is assuming he has no events (such a fevers) this weekend.

Thanks to Patrick for stopping by last night with dinner and to Cecille for hanging out with him this evening, especially since I had to leave early to be with the girls. Hope you all have a wonderful weekend and to all the dad's out there, have a wonderful Father's Day!

Infection

They found that Leo's got a staph infection. That's what's been causing all the chaos. So the good news is that they have narrowed down the cause for infection, so he is down to one antibiotic (rather than the 6 he was on earlier in the week). But because of the infection, they now have to take out his central line, which they will do today. The bad news is that he will be here at least until early next week. He was really hoping to be home to celebrate father's day with the girls this weekend. So we will just have to do another celebration another time. As long as nothing else comes in this weekend, we can hope he'll be home by next week. He had a bone marrow biopsy yesterday and the doctors are hoping to learn more about what's going on in his body with those results. Those will be available by tomorrow. Other than the staph infection, they have not seen anything else in his tests that would indicate other types of infections. After leaving the hospital, he will still be on antibiotics for another 4 weeks.

As of today, his WBC count hasn't come up at all. He is still at 0.1. They've given him several units of platelets yesterday and today to pump up his platelet count. They generally wait it much higher when he has to undergo any sort of procedure as the lower count will increase his risk for bleeding. So he's getting another platelet now and then they will take out his line.

Thanks to Larry for coming by today to donate platelets and hang out a bit! :)

Still here

Leo's had a bunch of tests this weekend to see what caused the drop in his counts and the fever that he's having. The initial diagnosis is that he has pneumonia. They have ruled out TB which is good. He had a broncoscopy today to determine exactly what's going on. a broncoscopy is basically when they take a camera and put it down your throat to see what's going on. While they are in there, they also slice a small part of the inflamed tissue for testing. We should hear back from those tests by tomorrow. The one thing that the doctors noticed is that the inflamed areas that they've seen in his lungs via the x-rays are the blood vessels. If that is the case, they are considering whether his central line may be infected. If so, then they will have to remove his line. But that determination hasn't been made yet.

His counts haven't come up yet and his fever still comes back now and again when the Tylenol wears off. He's had several transfusions since he's been here, so I've started my platelet donations again. Did my first round this afternoon and will go back again every 3 days. So again, if anyone has the time to spare and can make a donation for Leo, that would be great. :)

I will continue to post as information develops.

Back in the Hospital

As you know, Leo's counts have been going down and of last Monday, his WBC was at 0.6 which is extremely low. He was feeling fine most of the week, only needing platelets on Wednesday, but then on Thursday, he was exceptionally weak and slightly feverish. He was barely able to get out of the bed most of the day. He had an appointment to head back to Sherman in Elgin today to check his levels, but was still very tired. He was also experiencing soreness in his legs and arms and neck, with sharp pains in his head and bruising on his tongue. His fever went up to 101. When he got to sherman today, they immediately gave him some antibiotics, some pain meds and tylenol to control his fever. His WBC went down to 0.2, his platelets are at 4,000 and his red blood cell count is at 7.8. His WBC's haven't been that low since he first had his transplant, so the doctors at this point aren't sure what's going on. They were going to admit him to Sherman, but decided that it would be best to admit him to U of C. So as I type this, he is in an ambulance on his way there. The doctors' main concerns at this point are: 1. That the cancer may have returned, 2. That the cord blood cells have not properly grafted (meaning the transplant was not successful) or that 3. He has an infection of sorts that his body cannot handle at this point. They were also concerned this morning that he had sharp pains in his head. They did a scan to make sure there was no hemorrhaging, and it came back clear, so they have ruled that out.

I will be at the hospital most of the weekend, so I will keep you all posted. A couple prayers, please! Hope everyone enjoys their weekend!

Counts Down

Sorry I haven't posted in forever. Not much has been happening. I will try to post at least weekly to let you know what's going on. Things the last few weeks have been fairly stable. Leo's still be getting transfusions and his counts have been fairly stable. He's put on about 10 pounds in the last few weeks, which is great because he's dropped about 80 since his transplant. He's been getting his appetite back, which is good because it gives him more strength. But overall, he still has to limit the level of his activity as he gets tired quickly.

He is at U of C today getting his levels checked and theywere surprisingly low today. They had to take his blood a second time to make sure it wasn't a mis-read. But it has been verified. His WBC went down to 0.6, after being around 3.2 for a couple weeks. The doctors don't know what's happening, but they're obviously a bit concerned as it dropped so quickly. (It was at 3.2 on Friday). He needed 2 units of blood and 1 unit of platelets so far today and I don't know if they will give him something else. He will be seeing his doctor later, so hopefully they will have some insight as to what is going on.

I will do my best to keep everyone posted.

No Transfusion!

Just wanted to share with you guys that Leo went to the doctor today and they checked his blood and sent him back home! His counts were good enough that he didn't need either a blood or platelet transfusion! This is the first time in months that he hasn't needed a transfusion during his doctor's visit, so this is great news! Also, he's eating more and more and being more active, so that's all great news!

Have a great evening!

WBC 4.6!!!

You read right! As you know, Leo's WBC has been hovering around 0.6 and 0.7, never going above 1. It's been frustrating for him, as that is the primary sign as to whether the cord blood has engrafted or not. Well when he was at his doctor in Elgin on Friday, they said his WBC had gone up, but we didn't really want to believe it until he went to U of C today. But it was confirmed today that his WBC has certainly gone up a whole lot! He still needed platelets and blood today, but those counts didn't drop nearly as fast as they have been in weeks past. So I think all in all, this is good news! Now he will hopefully start feeling better. He was feeling good this past weekend, as we were able to go out and run some errands, but he still got tired very quickly. He so terribly wanted to watch the Pacquiao fight (go Pacquiao!) on Saturday, but there were so many people watching at my cousins' house that he didn't want to risk picking something up. He will sacrifice and just wait until it shows next weekend and for now, he has to deal with Bernadette's blow-by-blow analysis of the event. Haha....

Thanks to everyone for the positive vibes you're sending our way! Take care!

Sorry-been a stranger...

Sorry I haven't posted in a while, but not much has happened in the couple weeks that Leo's been home from the hospital. Good news is that he's kept away from infections and fevers, but he's still been going to U of C three times a week for blood and platelet transfusions. So like last week, for example, he went Monday, Wednesday and Friday and got both platelets and blood each time. His counts are still dropping fairly quickly and it makes him tired all the time. The doctors said that it is a bit odd that the cord blood hasn't kicked in yet, but they're not overly concerned at this point. They will start to let him see his doctor here in Elgin a couple times a week starting next week so that he doesn't have to go to the city all the time. So this week, he will see his local doctor on Wednesday after going to U of C for a transfusion. Then hopefully after that, he will be able to see his Elgin doctor twice a week and go to the city once.

We spend most of our time at home, as Leo can't go out in crowds of people or outdoors with all the spring pollen and such in the air. Easter was very low key for us. We usually hit a nice brunch or something, but decided just to order some food and have the immediate family here to celebrate. Leo was exhausted, but still glad to be with family during Easter. We also celebrated Alaina's 2nd birthday on April 15th and had a couple people over that evening. Lola made some pancit and we had some fried chicken. Such a Filipino meal! Good times were had by all. We are having a little party this Sunday for the kids to celebrate, but Leo will not be able to go.

I told you there wasn't much happening. I will be sure to update again soon! Take care!

Doing well...

Just wanted to let you know that Leo's been doing better. He's still pretty tired, but is so much happier to be resting here at home with his family instead of at the hospital. He's got a whole lot of medication going on, with the 30+ pill in a day, one suspension and 2 IV antibiotics a day, it's a job in itself to keep track of it all. He needed a platelet transfusion on Wednesday and a blood and platelet transfusion earlier today, so he's still having them pretty frequently. He also had a bone marrow biopsy on Wednesday to see what his progress is. The doctor told us today that the good news is that the CML is no longer showing in his marrow, but for some reason the "thing" (sorry forgot the term...megakerosytes, maybe?) that produces his platelets are not yet present, which is why he's getting so many transfusions. They expected to see these "things" in his marrow by now, which would be a good sign that the cord blood has taken, but say it's not unusual that they haven't showed up yet, so they're not too concerned. The other good news is that the nasty cough that he couldn't get rid of in the hospital seems to be gone now, which is great. Baby steps...

We'll be home all weekend enjoying the nice weather and some Easter activities with the girls. I'll be sure to have pictures to share with you all on my Facebook. May you and all your families have a wonderful Easter! Take care!

Going Home Again!!!

Leo is going home tonight! His doctors were still on the fence as to whether or not to let him go, because he had a slight fever last night, but after consulting with the infectious disease group, decided to let him go as the fever was not that high. All his blood cultures came back negative, so there's no other infection that's lingering in his system, but they are speculating that the fevers might be caused by his Hickman line. They will continue to monitor it and decide going forward if they will remove it. For now, he'll be sleeping in his own bed tonight and will be back for a doctor's appointment on Thursday.

Thank God!

Maybe...

Rumor around the nurses station is that maybe, just MAYBE Leo might be able to go home tomorrow. But here's what might hold us back. He had another fever last night of 101, so if that indicates some sort of infection again, he cannot leave. So last night the did a bunch of blood cultures to make sure there wasn't an infection looming in his system somewhere. But the good news is that his WBC is up to 2. The doctor did indicate that there's a chance that he got his fever as a result of his counts going up and his body adjusting. So let's hope that's the case and he may be able to go home tomorrow. I will be sure to update you all tomorrow.

Have a good evening!

Better

Leo's doing better, as he has been fever free for several days. They have been able to confirm that the infection was from his central line. Not from this inside (otherwise they would have removed it), but on the surface at the point of insertion. His blood counts have been still pretty low, as he needed both platelet and blood transfusions over the past couple of days. His WBC today is at 1.2, so up a bit, but pretty consistent this week. Not much else to post, but that we hope his condition will continue to stabilize so he can go home soon.

Thanks so much to Octavio and Fevin for coming by today to donate platelets! As Leo has been getting so many platelet transfusions lately, it's great to know that he's got great family and friends to give this wonderful gift. Thank you!

Better, but worse

So at least Leo's fever seems to be under control, which is a good sign that they've controlled the infection. But unfortunately, his blood counts have gone down. So his WBC is now at 1.2. They're pretty sure now that his mom's stem cells have expired. This was sooner than expected, likely because of the RSV virus that he had the other week. Now their hopes are that the cord blood will kick in and start bringing up his counts again, but it doesn't seem like it will be anytime soon. At the earliest, the doctors have said he may be able to go home next week sometime. His days are pretty uneventful here in the hospital, basically getting his medication and antibiotics and just being closely monitored. He's still fairly transfusion dependent, so I'm back to donating platelets for him now that I'm off the antibiotics for my tooth. (My tooth is ok, btw, it's just weird that I now have this gap in the back of my mouth where a molar used to be.) So if anyone can come by this or early next week to donate platelets, that would be great!

WBC Starting to Climb

Leo's fever has still been hovering around 100 most of the day, but the good news is that his WBC went up a bit and is back at 1.4. He has gone back on his neupogen injections that help to increase his WBC count, so it's not his body increasing the counts on its own. Regardless, his counts are going up again, which is a good sign. He had to have platelets again today, but other than that, just his standard medications that he's been taking all along. He did have a bit of an appetite today, as he asked his mom to make tinola (like a chicken soup), so this is a good sign as well. For most of the day, he just rested. Nothing much more to report, but sometimes, uneventful is better.

Have a good evening.

Still Here

Just wanted to send a quick update on what's been going on today. Leo still had his fever most of the day today and it spiked a couple times last night. He was holding steady at around 101 or so most of the morning. It seems to have subsided this afternoon, which is a good thing. One of his blood cultures came back positive, confirming that he did have an infection in his blood. They are speculating that the infection is related to his central line. So they have him on antibiotics now to control that infection. Additionally, his blood counts have dropped again. His WBC is at o.8 and his platelet and hemoglobin counts required that he get transfusions. So basically, if we can get the infection and fever under control and his blood counts start again on an upward pattern, they will release him. No projected timing on this, it just depends on how his body reacts to the medication.

If there are any further developments today, I will post again.

Back in the Hospital - Fever

Sorry I didn't update sooner. I didn't have my laptop...

Leo was able to enjoy being at home for just under 2 days. Most of the time, he was in bed sleeping. He was feeling a bit warm and I was taking his temperature now and again and the highest one I got was 100.9. His discharge orders said to call the doctor immediately when his temp was over 101. Technically, it wasn't over 101, so I didn't call as I didn't have the heart to tell him he might have to be readmitted to the hospital. So Saturday afternoon, the home health care nurse came to our house to care for Leo's hickman line. As part of her process, she has to take his vitals. She took his temperature as 103.4. He did feel warm, but we're skeptical as to whether is was really that high. But given that reading, she wanted us to call the doctor immediately, which we did and of course, she wanted him to come into the hospital right away. We got to the hospital around 4pm and were admitted into the ER, where we stayed until about 11pm, when a room came available. They did some blood tests and found that his blood counts have dropped significantly and quickly. His WBC count on Thursday was 5.9 when he left. It has now dropped to 1.2. He needed both a platelet and blood transfusion as those counts were low too. They did an xray on his chest to see if there was an infection there, but there was not. They've done some blood cultures to check for other infections, but we won't know the results of those until maybe tomorrow or Tuesday. The doctors that came by today have suggested that possibly the stem cells from his mom (which is what was causing his counts to do so well in the past) are starting to expire and the cord blood cells need to take over at this point. So they said it's not unusual that his counts would drop. The hope is that they will start to climb again as the cord blood "learns" how to work in his system. But until that happens, they have to investigate any cause for infection possible, as his body cannot handle infection at this point. Since he's been admitted, his fever has been pretty consistent and have spiked one other time this evening to 102.3. So they are keeping a close eye on him.

Hopefully they will find something soon and he won't have to stay here much longer. I'm sure you can imagine that the girls were all very disappointed that their daddy had to leave again and it just breaks my heart to see them like that. Thanks to everyone that sent good wishes and welcome home vibes our way for the short time that he was there, but he is unfortunately here in the hospital again for an undefined period of time. I want to send a special thank you to all of Leo's co-workers at Mobil Travel Guide. They sent a beautiful Edible Arrangement of different fruits. Leo was not able to eat it, as he was still restricted from fresh fruits and vegetables, but he really enjoyed watching the girls (and me!) enjoying it in celebration of his homecoming! Thank you all so much! Updates to follow...

HOME!!!

After 29 days in the hospital, Leo is finally home! We didn't get home this evening until about 8:30 or so. He spent most of the day in the hospital getting updated on all the medication that he needs to take at home (He has to take almost 30 pills a day!). He also needed platelets and a few other medications through his IV before he left. His WBC count was at 4.9 today, which is great news. He's certainly on the right track. He's so glad to be home and the girls were thrilled to say the least. After saying hi to the girls, he basically just went to sleep. He's exhausted, but glad to be in his own bed again. At this point, he'll basically be on a lot of medication, will have frequent visits by a home health care nurse, and several doctor visits a week.

Thanks again to everyone for all your support. Even though Leo is home already, I will continue to update the blog as needed, but not everyday like I have been. As always, you can always call or email us for whatever. Have a great weekend everyone!

U of C Day 28 - Light at the end of the tunnel?!?!

Hey everyone-I just spoke to Leo and he got GREAT news today! HisWBC count is now at 4! He's been doing so well that his doctors have said that he can go home either tomorrow, if not Friday for sure!!!! I'm sure you can all imagine how excited Leo must be and how excited I am!!! It's been 28 days so far and it's been really difficult for him, especially not being able to see the girls. Although nothing is confirmed yet, I think we can count on him being home by the weekend!!!

As such, they may not move him to a new room since he might be leaving tomorrow. So I'm not sure if I can go visit. Just wanted to share the wonderful news! Later!

U of C Days 26 and 27 - More Progress

Looks like Leo's done really well the past couple days! His WBC count is now 3! Also, his doctors said he could stop doing the nebulizer today (either this afternoon's was the last or he may have one more this evening), which is a day earlier than originally planned. Finally, they are starting to take him off some of his IV's, which have been running 24 hours a day to this point. The plan is to start taking him off the IV's, then start him on the oral equivalents of those IV's so he can continue to take them when he comes home. So all these things combined mean really great progress for Leo! He will be transferring rooms as soon as one is available, so I will be able to visit him in the hospital again hopefully tomorrow night.
As always, thanks to everyone for their support. We could never have done this without you!

U of C Day 25 - WBC Over 2!

You read right! Leo's WBC count has gone up to 2.2, which is a big jump and a good sign that he's well on his way to recovery. I still cannot visit him in the hospital, but have been talking to him whenever I can. The nebulizer treatments are annoying, but they certainly seem to be helping him. He also has to make sure he eats at least a bit, as it affects the way that his new antibiotic works for him. If he has no food in his system, it basically won't work. So he's doing better and better in eating food and keeping it down.

I am going back to work tomorrow after being gone for over 3 weeks. As I still cannot visit Leo in the hospital, the timing actually worked out ok, but I'll go back to the hospital in the evenings after I get the all clear from the doctors to come visit.

Thanks again to everyone that's stopped by or called to keep Leo company. He really appreciates the company. Have a good evening!

U of C Day 24 - Nebulizer

To date, the only experience we've had with a nebulizer is with the girls and their asthma. The treatments that Leo started last night to help his cough require that he be on a nebulizer for 2 hours, 3 times a day. Based on his treatments last night and today, he says it makes his nose and throat feel like they're frozen and when he took it off, there was some sort of white residue on his nose. But the good news is that it seems as though the treatments are helping, as his cough isn't as frequent and he is coughing up less. So let's hope he keeps getting better.

Leo was moved back to the oncology unit last night, which is good, as the nurses are better and more attentive. He's on the non-isolation side just because of the type of room he needs, but doesn't mean we don't have to take the same precautions. All visitors still need to wear a mask, can't be sick and cannot be females of child bearing age. Thanks again to anyone that can stop by to visit, as Leo really appreciates the company.

My thanks to Charles, Arvin, mom, dad and Tita Nena for coming by to visit Leo today. I feel really badly that I cannot be there with him though this difficult time, but am so glad that Leo's got wonderful family and friends to help him out. Thank you guys!

U of C Day 23 - Male Visitors, Please!

So based on the CT Scan that Leo had yesterday, his lungs were not looking much better, although he feels better and isn't coughing as much. As such, the teams of various doctors have recommended a treatment plan to clear his lungs that utilizes a nebulizer treatment 3 times a day for 2 hours a piece, so basically his entire day. The bad thing about this treatment is that there are bad side effects to women that are or may be pregnant. So they have informed us that women of child bearing age (i.e. me) are not allowed in the room during or in between treatment. Treatments start tonight, so I will be kicked out at that point and will not be allowed back until the treatment is over (5 days) and the room has had a deep cleaning. So if any guys (or women no longer of child bearing age) have been thinking of coming, I would really appreciate it if you could stop by and keep Leo company between this evening and next Wednesday. Of course, the same rules apply-if you are sick, coughing, or with any other symptoms, please don't come. And you will be required to wear masks the entire time. Thank you all in advance!

U of C Day 22 - Hair

Leo still in his isolated room as they are still waiting for the RSV virus to pass. They are contemplating giving him this nebulizer therapy to help cure the virus, but apparently it has more bad side effects than benefits. And the benefits aren't really proven, so the doctors are still deciding what to do. They did another CT Scan this evening and if the infection is worse, they will start the therapy right away. If it's better, then they will just let the virus pass. Hopefully we'll know be tomorrow. On a more positive note, Leo's WBC count went up again today and he is at 1.9, which is really great.

Leo's hair has been shedding quite a bit the last couple days. He started to see it on his pillow and shirt and it was depressing him a bit. When I washed his hair today, quite a bit came out and he now has several bald patches around his head. He didn't think he'd be too bothered by it, but I think he is. It's just another step in the recovery process.

Thanks to Charles and Cathy for coming by to visit today. Leo was so happy to see you guys! Thanks also to Charles for donating platelets. I had to stop by the donor facility and let them know I was on anti-biotics, so couldn't donate. It was like I broke up with them. They were disappointed that I wouldn't be coming by every three days, but I'm sure they'll deal just fine.

Have a great evening everyone. I'm getting pretty used to breathing through a mask all the time, but it still sucks. Hopefully this virus will pass and Leo will get better soon. Take care all!

U of C Day 21 - RSV Virus

So the result of the CT Scan yesterday was that Leo has the RSV Virus, which may sound familiar to those of you that have kids as it's actually quite common in younger kids. But since Leo's immune system is so compromised, the effects of the virus are multiplied. He did have a procedure this morning, called a bronchoscopy, where they insert a camera though his mouth to examine his airways for inflammation or other irregularities. He was sleeping for the procedure, and was pretty groggy most of the day. Because he has this viral infection, he had to be moved to another room. His current room is no longer on the oncology unit as he is now on the medical surgical unit. But I guess this room has negative pressure, which is supposed to prevent the virus from infecting other patients in the building. How he got the virus, we don't know, but at this point, the doctors want the virus to run its course. He will be in the medical surgical unit until the virus passes, then he will go back to the oncology unit.

The WBC count of 3 that I told you about the other day was a fluke. His counts are still increasing, but right now, it is at 0.9, which is still good, as he started at 0.1 last week. So he's making progress, but not as huge of a jump as originally thought. This viral infection that he's picked up has put a bit of a bump on the road, but I know that the doctors are doing their best to get him back on track.

My tooth is doing ok, in case anyone is wondering. The pain isn't nearly as bad as it was yesterday, but it's still a bit painful. It's tolerable, so I'll be ok...:(

U of C Day 20 - Respiratory Infection

So I've been telling you guys that Leo's had this nagging cough that would just not give up. they did a CT Scan of his lungs last night and have determined that he has a respiratory infection. They are worried that it may be TB or pneumonia, but haven't made a final determination yet as to what it is. Because of this development, he has been moved to a different room, which is considered a respiratory infection room. It's still on the same floor in the same unit, just a few doors down. He is still allowed to have visitors, but NO ONE is allowed in the room without a face mask. So if anyone is anticipating coming to visit, please keep this in mind. And please, even more than usual, DO NOT come if you have a cough, sore throat and any other symptoms that might indicate a sickness coming on. Thanks so much for all your cooperation.

Also, I had to have a tooth pulled today (OUCH!) and have been in a lot of pain, so wasn't able to go to the hospital today. It also means that the pain killers and antibiotics they gave me will not allow me to donate platelets anymore. Leo still needs them. So if anyone has been thinking of donating, this would be a great time. Thanks again.

Have a great evening!