U of C Day 3 - Bigger Room

This won't be long. I'm trying to get this update out of the way so I don't have to worry about it later as I will be at home with the girls. But the most exciting event of the day is that we got a bigger room. It's like twice the size of the other one we were in. Ournurse today is awesome and said that this room would better accommodate a Filipino family. Haha. We have had quite a few visitors and it would get pretty crowded in our little room. Now if anyone comes to visit, it should be a little better. :)

Nothing much happened on the treatment end. Leo had another round of chemo today, and luckily had no bad side effects.

That's about it. I'm going home tonight to see the girls and take Kadence to Sunday school tomorrow and church, then will be coming back to the hospital around lunch or so.

Have a great evening everyone!

U of C Day 2 - Chemo

Another long day. Leo's mom came in for the second installment of her stem cell collection. they did it for another 5 hours and now they have enough for the transplant next Friday. She is doing well, just wiped out. Leo is still in pain from the site where they put in his line. Hopefully that wears off soon. Today was mostly him getting medications to prepare him for his first day of chemo. We also had a couple doctors stop by to talk to us more about the procedure and what to expect. So here's what we know: Starting today through next Thursday, he is undergoing an intense chemo regimen. It takes about 8 hours each day and there is one day during the week when he will have a break for his body to recover. After his chemo, they will do the transplant of Friday and that's what they consider day 0. Days 0 through 7 will be the most crucial for him, as we wait to see if his body accepts the stem cell donation from his mom. Around day 0 as well is when they expect the chemo meds to start having their side effects on him (hair loss, nausea, fatigue, etc.), so all in all next Friday onwards is going to be a huge challenge for him. He started his first chemo treatment this evening and so far it's been going ok. He's been getting chills and his blood pressure is a bit elevated, but the nurse said this is normal. He will finish around 3 this morning.

Paul and Patrick came by to visit today, as well as Leo's parents after his mom was done with her procedure. Paul brought a wonderful surprise for Leo from the group at Mobiltravelguide-a standee of a family picture that we took at kadence's birthday (it's about 4 feet tall-if you look me up on Facebook, it's my profile picture). We've gotten so many complements on it since it arrived and I think it helps Leo miss the girls a little bit less. Thanks so much to all of Leo's friends/co-workers that put this very special gift together for him!

Another visiting clarification-no flowers or plants are allowed. Also, no fresh fruits or veggies are allowed. Cooked food is allowed (and certain ones actuallywelcomed, because leo's actually craving some things before his appetite and tastebuds are totally shot!). Leo can have visitors at least for the next few days, but when his blood counts start to drop as a result of the chemo, no more guests. Hope this helps.

So I am going on Monday for my second platelet donation. I think Patrick is coming with me too (or did I scare you away with my stories?). If anyone else is interested and has time to spare in the U of C area on Monday, platelet donors are welcome and Leo will certainly need them over the next week. You can donate specifically for Leo so this will be a way you can benefit his directly. It is time consuming, as it will take about an hour and a half, but if you can spare it, thank you in advance!

That's it for me. It's just before 11pm and I'm wiped out! Luckily, I was able to go home a bit today and visit the girls, which totally brightened my day. I took some pics of them this evening and put them on my FB profile if you haven't seen them already. I just wanted to let Leo know what kind of goofy things they were doing this evening.

Have a great weekend everyone!

U of C Day 1 - Getting Settled

It's been a really long day. We had to leave the house around 6am to attempt to make it to the hospital by 7:30 this morning. Of course, traffic was not in our favor today and we didn't arrive until after 8am. They started the stem cell collection process immediately on his mom and it went for about 5 hours. She did well, just exhausted after the process was done. As expected, she needs to report in tomorrow again for a second collection as they were not able to collect enough cells in this one shot. She is at home now resting and will be back in the hospital tomorrow morning to do it all again. Leo spent his whole morning getting platelet transfusions, 3 units to be exact. By the time they got to the third unit, he started to break out in hives and his lips got swollen, but the nurses said it was not uncommon given that he had so many platelet units at once. They gave him some Benadryl and Cortizone and he was feeling better. After the platelet buffet, they took Leo to have his Hickman Line put in. That is basically tubes that come out of his collarbone area that will be used to administer medicine, draw blood and do the transplant. The procedure took about an hour and he is now recovering from that. They gave him some serious drugs, so he's pretty knocked out. The doctors said that it will be a bit painful after the drugs wear off, but should only last a couple days. After that procedure, they finally admitted him into his room. Just our luck, the floor is quite full, so we have the world's smallest room. All that can fit in here is the hospital bed and a chair. I've already asked if this is where he's going to be for the duration of his stay and they said they would try to get him a bigger room.

Since I had a lot of waiting time today, I decided to donate platelets. Leo has clearly done his part to deplete this supply, getting several transfusions a week. I had no idea that there was such a need for platelet donors. But I guess you can only use the platelets up to 5 days after they are donated, so that really limits everything. The process take about an hour and a half, so much more involved than donating blood. But you can donate platelets every 72 hours. Given that, I will be visiting the donation group every 3 days while we are here. It's nice because I can donate specifically for Leo (and he will be needing transfusions over the next week) and I get a consolation prize of free parking. So I'll take it. If anyone else is in the area and can spare some time, please consider donating platelets as well. You can donate specifically for Leo or just for anyone else in need - it's a great gift to give!

A change to Leo's treatment that we were informed of today is that they will no longer do the Total Body Radiation that they were planning to do. Instead, they will administer Chemotherapy starting tomorrow. This decision was based largely on the his hospitalization this past weekend. We have been told that the end result should be the same (basically zapping all his bone marrow so they can transplant the new marrow).

Because several people have asked again, Leo is allowed to have visitors for now. Absolutely no kids under 16. Even if he wants to see our kids, he cannot do it on the unit, he would have to walk out to the reception area and do it from there. No flowers or food (especially fresh fruits) will be allowed on to the unit, much less his room. As I said, we are currently in the world's smallest room, so it won't be a "comfortable" visit and you will likely not have anywhere to sit. And obviously, if you have ANY sort of sickness, cough, cold, flu...whatever. Please do not come here. Thanks!

Ok-that's all I have for today. It's only 7:30pm and I am exhausted. I can only imagine how Leo must be feeling. Have a wonderful evening everyone and please keep Leo in your prayers.

For real

Tomorrow is the big day. Leo and his mom are both going in to the hospital for their procedures. They both have to be there at 7:30 in the morning and they will start the stem cell collection on his mom immediately. Her procedure will take 4-5 hours. At the end of that time, they can assess if they have enough stem cells and likely will have her come in Friday morning as well to collect again. Her procedure will be outpatient, so at least she will be able to go home in between days. Leo, on the other hand, will start this long journey of recovery tomorrow. He will get to the hospital at 7:30 aswell, but that is because they have to start giving him platelets. They will basically be pumping him with platelets to get his counts up to get all his other procedures going. They will be putting in his line so they can administered medicine and draw blood and ultimately perform the transplant. Then they will start his radiation therapy twice a day for the next week or so. After that week, they will do the transplant with the cells they collected from his mom and the donated cord blood (thank you to who ever donated this wonderful gift!) and then we wait.

I am so glad that it is finally here, as I just want Leo to get better, but it's all very terrifying now that it's actually all happening. It's hard to believe that when Leo goes in tomorrow, he will not be home for about a month or so. But in the end, I know it will all be worth it because he will get his life back and will enjoy it even more.

Today is my last day physically in the office, as I will be a permanent fixture at U of C while all this is happening. For now, I have 3 weeks out of the office, but will still check in now and again. I will be updating the blog as frequently as I can so that everyone knows what's going on. As far as I know, visitors are very limited while this whole procedure is happening, but as I get more information I will let you know, as several of you have asked about this. No gifts of flowers or food will be allowed into his room, so please do not send those. All we really need right now are your prayers and good wishes.

Thanks again to all our family and friends that have helped us and been our support system through all this. Without you, everything would have been so much more difficult for us. If anything, this whole thing has brought us even closer to those we were already close with and have brought some new friends in our lives that have been a wonderful source of support.

I will post again tomorrow evening to let you know how everything went on day 1. Wish us luck!

Here we go...

Leo was released from the hospital yesterday afternoon. Luckily, his fever did not resurface, so the doctors cleared him to go. We have to be very careful when Leo gets a fever because his immune system is so compromised. His white blood cells were at an all time low count of .9, which is dangerously low. They needed to monitor him closely to make sure the infection was under control. Luckily, they let him go yesterday so he could hang out at home until they admit him on Thursday to start his radiation therapy. He had just been taking it easy here at home, enjoying the company of good friends and hanging out with the girls. His mom started her neupogen injections today and is starting to feel soreness in her bones, which was a side effect that the doctors warned us of last week. She takes them twice a day until Wednesday. Then she goes in Thursday so they can retrieve her stem cells. Leo is now on disability from work, as he will be starting some other medications tomorrow via visits from a home health care professional. This is all in preparation for his admission on Thursday. So the balls are all in motion. Thanks to everyone for their warm wishes and prayers. We will certainly need them in the next few weeks!

Till the next update....

Laryngitis

I just got off the phone with the nurse at the hospital (Sherman in Elgin). Leo went in for his transfusions this morning, but it looks like they'll have to admit him. He's got laryngitis and the doctor saw some suspicious white spots in his throat and thinks it might be strep. They have to start him on antibiotics immediately. Hopefully he'll only be there one night, but it really just depends on how he takes to the antibiotics. Just wanted to post this quick little entry to let you know what was going on.

We're on the calendar....again

Leo's mom went to the doctor today and her tests all came out great. Her platelet counts were good, her heart is healthy and overall in great shape. She will be his donor (for real this time). So our revised schedule is as follows: Leo's mom will start her neupogen on Sunday and they will collect her stem cells next Thursday and possibly Friday, if necessary. Leo will be admitted next Thursday and will start his radiation therapy that same day.

Leo's been feeling kinda sick the last couple days. He had a bit of a fever last night and now his throat is sore. He did have his blood counts today and they were ok, not great. He will be going in tomorrow for a blood transfusion, but doesn't need platelets, which is good. So our evenings are pretty much just taking it easy and hanging out with the girls before he is admitted next week.

Thanks to everyone that's been following the blog since I've started it. It's been really helpful for me to not have to tell the same updates several times. Please do still feel free to call us. I don't want you all to feel hesitant at all. The purpose of this was just to give you the latest information. We'll take your calls whenever we can, but if we don't pick up, then likely Leo is just not feeling well and I have my hands full with the girls or something else. Take care!

One step closer

So we spent the whole day at U of C today. Actually we are still here as I type this as Leo needed to get another platelet transfusion this afternoon. It was a productive day. Aside of the usual blood tests that Leo usually gets, his mom underwent some blood tests and had an x-ray and EKG to make sure that she will be a suitable donor for Leo. Based on some preliminary information (keep in mind, it's preliminary) his mom's platelet counts were really good, as opposed to his dad, whose counts were low. So that's a really good sign. She has a fol ow up appointment with the doctor on Wednesday and they will give more information at that point. If she checks out and they clear her for donation, they will collect her stem cells next week Thursday and possibly Friday, if needed. Leo will be admitted to the hospital (allegedly) next Thursday as well. As you can see, I am a bit skeptical at this point given all the road bumps that we've encountered. So we'll just see what the next week brings.

That's all I have for today. Please say a quick prayer for us!

Back to waiting

So last we heard from U of C as of Friday evening was that it was a go and we would use Leo's dad as the donor. We got a message Friday at midnight saying that we can no longer use his dad. I don't even know if I am explaining it right, but they found these kerosytes (sp?!) in his dad's blood that basically hinder or prevent the production of white blood cells. So if this blood were to go into Leo, it would worsen his condition. If someone has a better explanation for this, please feel free to share. What's so frustrating is that they should have just told us that there were still looking at something from the test results, rather than put everything else in motion, from Leo's dad getting his pre-transplant drugs, to Leo getting his admission date and home health care in place, etc. But they did all that and THEN told us that his dad would not be able to donate. So frustrating. I am not in the medical field. So maybe I just don't understand, but it just sucks because we just want to get it over with. So anyway...that being said, they are now going persue using Leo's mom instead. They have already determined that she is a half match as well. So it's basically back to square one. They have to do a full set of physicals to determine whether or not she is suitable to donate. So we are going to the doctor tomorrow. So I guess updates to follow.

On the marrow drive front, I think most of you know that I suspended any further drives for now, given Leo's condition and everything that's going on. I'm very lucky to have wonderful family and friends who are still working towards the cause. Today, my cousins in LA held a Hope4Leo drive at their church and recruited 45 donors. This is so awesome. Special, special thanks to Cecille, Brian, Celina, Janelle and Jerald. You guys are so awesome!

I will be sure to post tomorrow evening with further updates. Have a happy, happy Monday everyone!

The big shave

Leo shaved his head today. Luckily, he's been wearing his hair pretty short anyway, so the transition wasn't that drastic, but a change nonetheless. As he starts his intense radiation therapy next week and hair loss will be one of the many side effects, he decided to cut to the chase now, rather than see his hair fall out in patches later. It makes sense. It's just that everything is really going into motion now after all the delays and it's a total reality check for me. So Leo was in the hospital most of the day today as he needed both a blood and platelet transfusion. While he was there (at Sherman in Elgin), I went with his dad to U of C so he could get his Neupogen injections. He has to take them twice a day for 4 days to help facilitate his stem cell collection, which will be Wednesday morning. They hope to collect all they need that day, but it may take 2 days, so we'll see. I guess that was pretty much the highlights of our day today. Hopefully we can have a nice laid back weekend before all the activity of next week.

Have a great weekend everyone!

It's a go...

We just got a call at lunch today from U of C. Leo's dad has been cleared for donation and will begin his drug regimen tomorrow. The concern that the doctors had that was taking long was primarily because of the low platelets, but also because of the fear that his dad was exposed to the hepatitis virus, which I understand many Asians are. Luckily, he had no trace of hepatitis in his system and they believe he is safe to donate. So Leo will be admitted to U of C next week, Thursday (2/19) to have his pick line installed (hmmmm....don't know if that's the right word. Makes it sound like he's having a sound system installed.), which he ultimately will need for the transplant, but will be used to draw blood and administer the chemo as well. He will also start his intense radiation schedule next week. Twice a day for about 8 days (depending on how his body reacts to the treatments). At the end of the chemo sessions, they will do the transplant, so approximately 2/26, and then we wait...

That's the update I have for now. I know many people wanted to know what was going on, so I hope this helps. I guess for now, we'll just try to enjoy this upcoming Valentine's Day weekend before Leo is admitted next week. As I find out more, I will let you know. If we don't chat before the weekend, I hope you all have wonderful Valentine's Days with your loved ones!

Waiting...

Waiting is always the hardest part, isn't it? The original plan last week was that Leo was going to be admitted today and they would start his chemo tomorrow morning for a twice daily regimen for the 10 days before his transplant, which was originally scheduled for 2/19. But since there have been some complications with his dad's blood tests, we are still awaiting the results of his biopsy, which he had last Friday to see if he is still a viable donor. They were supposed to get the results in yesterday, but I guess they are still being analyzed by the specialists, so we basically have to just sit and wait until they tell us what is going on. Hopefully we will know be tomorrow, then I will be sure to update you all and I know you want to know the latest. So at this point, we don't know when Leo will be admitted, but it likely won't be this week. My guess is next week, but what do I know? I've also been kind of worried about the layoffs and budget cuts that were just announced at University of Chicago earlier this week. Hope the cuts aren't going to be in Oncology...

So hopefully we will hear about his dad soon so we know what the next steps will be. If his dad cannot donate, we don't know what the back up plan is, but let's hope we won't need it. I will keep you all posted as soon as I know. Say a little prayer for us!

Wonderful Weekend

Hope everyone enjoyed their weekends. We were really lucky that we had such wonderful weather (it was in the 40's and 50's all weekend) and we celebrated Kadence's 5th birthday. It was pure chaos, but so much fun. It was great to have all our friends and family in one place (there were over 75 of us!) to celebrate. I want to thank everyone that attended and also thank you for your consideration in not bringing up the events of the past week to ruin the mood of the party. I have done my best to keep everyone updated so we wouldn't get a bunch of questions this weekend and it really seemed to help. I also got a lot of good feedback on this blog, which is great. I think it's wonderful also when you all leave comments, as I make sure that Leo reads them and he really appreciates the good wishes and prayers that everyone sends. If there's anything I'm forgetting to give details on, please let me know!

Special thank you's to Patrick, Arvin, Celeste and Rino for hanging out with us after the party last night. We had such a good time chatting, drinking (clearly I was doing most of the drinking, but Arvin came in a close second) and playing Sing Star till 5 am! I had such a blast and couldn't ask for better friends/family. Thanks guys!

Luckily, Leo's blood counts were stable as of last Friday, so he didn't need another transfusion. He goes to U of C tomorrow and hopefully will get the results of last week's test. We've already been informed that he will need a transfusion tomorrow, so it will be a long day in the city. I will be sure to post tomorrow on what happens. Till then!

Bone Marrow Biopsy

Not Leo this time, but his dad, got a bone marrow biopsy today at UofC. His dad was tested last Monday to test his health as the potential stem cell donor to Leo. His blood tests showed that he had a low platelet count. An average healthy person has about 140,000 as a platelet count. Leo's dad had 120,000. So it's not severely low, but the doctors need to make sure he'll be ok to donate to Leo. As another reference point, Leo's platelets have been as low as 3,000 in the past few weeks. So the earliest we will get the results back from the biopsy will be next Tuesday. The results of this test will determine whether or not his dad will be able to donate to him, so let's hope that he is still a viable candidate. So let's keep our fingers crossed.

We are preparing for our oldest daughter's 5th birthday party tomorrow. Originally, it was supposed to be next Saturday on Valentine's day, but given how things have gone this week, we decided to make the party sooner so that Leo could celebrate with his little girl. It will also give him an opportunity to see family and friends before going in to the hospital for his procedure. I will be sure to take a lot of pictures to share with you all.

Hope you all have a wonderful weekend!

Let's hope I can keep up with this...

Hi everyone. With everything that's going on now with Leo's condition and upcoming transplant, I thought it would be a good idea for me to start a blog of what is happening. I think this will prove especially helpful when he is in the hospital in isolation and likely will not be able to take visitors. We will be able to keep you all posted on his status and you will all be able to leave him comments and to let him know that you're thinking of him. So I think for my first post, it will be helpful to give you all the story to date:

So back in late 2007, he started feeling extra tired and there was a pain in his side that began to be unbearable. The pain became so bad that he decided to see his doctor, who told him that his blood tests were coming back very unusual and that he should see an oncologist. Leo was officially diagnosed with Chronic Myelogenous Leukemia (CML) in December 2007 and was put on an oral chemo medication, Gleevec, that worked well to bring his blood levels back to normal. The medication worked well for almost a year, until around October 2008. His doctor started to see blast cells in his blood tests, which were an indication that his CML has advanced to the blast phase. At this point, they referred him to a specialist at University of Chicago. Since then, Leo's condition has been up and down, depending on the levels of platelets and red and white blood cells in his system. He has been much more tired and for those of you that know how his appetite used to be, it's certainly not the same now. As of late, he has been getting multiple platelet and blood transfusions per week and his doctor has told us that he needs to have a bone marrow transplant ASAP. Despite all my efforts and the efforts of our friends and family over the holiday season (we have recruited almost 500 donors to the National Marrow Donor Program) to encourage more people to become registered donors, Leo hasn't found a match. His brother is not a match either. His dad is a half match, so Leo's doctors have decided that they can use his dad as a stem cell donor for a procedure called a haplo transplant. In this procedure, they use his dad's stem cells, along with donated cord blood and attempt a transplant. We have already been informed about the riskiness of this procedure but have also been told that given Leo's current condition, we don't have much of a choice. His frequent platelet count drops have put him at the risk of cerebral hemorraging, which is not a risk we want to take. HE was origianlly scheduled to be admitted to UofC next week to begin his radiotherapy in preparation for the transplant, but we have run into some complications with Leo's dad's condition and further testing needs to be done to ensure that the procedure will not put his dad at too much risk. We still anticipate the transplant to come in the next few weeks, but as this news changes, I will let you all know. Leo's hospital stay, if all goes well, will be about a month, followed by several months of recovery at home. When in the hospital, he will be in isolation, so he may not be able to take guests, food gifts, flowers, plants, etc. I'm already reading all your minds, so I want to make sure that you are all aware of this limitation. So that brings us to today...

We spent all day today at U of C, so Leo could have all his pretansplant tests and we met with the radiologist that will coordinate his chemotherapy in the coming weeks. We don't have results yet for anything, but hopefully all will come back positive so we can move forward with the procedure.

I think that's about it for now. I will post updates here as they are available. Hope you find this information helpful. Take care!