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! :)