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.