Day 9, chemo #1

It's been an interesting day! Here is the scoop. Last night was when they were supposed to start the new chemo, valcade. It is supposed to be done immediately following plasma pheresis. She was supposed to go down for pheresis at 7:30PM and I was going to go hang with her so she was not bored and alone. They postponed because they were short handed and Maddy didn't go down until 10:30! She told me to stay back in the room and go to bed because I had to work in the morning. She is so sweet! It took a few hours for her to get back, and then they had to get the chemo nurse to come administer the first dose of valcade. That didn't happen until about 1:30AM!

I got up with Maddy while they administered the chemo. It was not a huge dose but they had to administer it subcutaneous, like insulin, in her tummy. It burned for a but she said but didn't hurt for too long. I could tell she was very uncomfortable. They had lots of instructions and precautions to go along with the chemo. See the door signs below. The nurses all have to use special chemo gloves when working with Maddy especially when dealing with any of her body fluids. Apparently Maddy is now poisonous until 24 hours following her final dose of chemo. They gave her a dose of benadryl before to make sure she was covered in case of an allergic reaction. They also had an anti-nausea medication. Both if which usually knock Maddy out. So she was hoping to finally get some sleep and not experience any side effects.

She told me to go back to sleep after all the hubbub was over. I got a little bit of restless sleep but. She didn't have quite as much luck. She didn't have any nausea but she did experience some issues with her arms and legs. The best way to describe it is restless leg syndrome in all her appendages. At about 3:30AM she called her nurse who was able to get her some Adavant, which helped her get some restless sleep. When I got up at 4:30 to go to work she was resting a little.

After that she had a bit of a bad morning while I was at work. She tried to catch up on sleep but could not get past the weird feeling in her arms and legs. It was not exactly neuropathy, which is one of the possible side effects, but very uncomfortable and stress inducing none the less. The doctor told her everyone was ordered to leave her alone today. No pheresis, no chemo, only breathing treatments and lots of opportunity for rest. By the time I got back here after work around 2PM she was up and ready to get the heck out of this room for a while! We took a nice long walk to Starbucks and sat by the channel for about an hour in the fresh air and shade. It didn't take long for her to be back to her usual cheerful self! I'm still simply amazed at how resilient this young woman is!

The above pic is before Maddy went for her walk at 3:30PM. The pic at the top of the page is from about 8PM as we prepared to watch one of our favorite movies. What a difference! In other news, despite having to deal with all this hospital stuff and only a few hours sleep in the last few days I managed to have a good birthday too! Maddy remembered my birthday and wished me a happy bday at 1:30AM while she was getting stabbed in the tummy! Then I got to go to lunch with Missy, my new awesome girl friend. I also got a huge Wrights cake at the office! Maddy and I had a great chat during our walk and it was awesome to see her cheer up so quickly. Of course, the only thing that would have made it better is if Maddy was not going through this.

If things continue to proceed like this I will not post to this blog again for a few days. If things go south or get weird again I'll keep everybody in the loop. Remember no news is good news. Thanks again for all the prayers.

 

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Day 8

Found out they have DVD players built into the TV here. I brought a bunch of movies to keep Maddy entertained. She is in good spirits today. Last night after the doc told her the rejection was persisting she was very upset and sat in her bed and had a bit of a cry for a very long time. Poor kid! Her nurse, Anne, who has been with her for a number of days in a row was very upset to see Maddy so sad. They had a conversation earlier in the week about Reese's pieces and how Maddy likes the peanut butter part better than the chocolate. So today Anne brought Maddy a giant Reese's cup and Reese's peanut butter chips (see below). So sweet! Anyway, I thought Maddy would be in a funk for at least a day or so but she cheered up within a few hours of getting the news and was cracking jokes with me and laughing at the TV. Amazing! I never cease to be amazed at how strong and resilient my daughter is!

So the bad news for today is that they will be starting a round of chemo therapy on Maddy tonight immediately after her plasma pheresis. It's called Velcade and it will not be a fun experience. The most common side effect is peripheral neuropathy, numbness and possible pain in the fingers and toes. Apparently in order to lessen the risk of this they inject the chemo in her stomach or thigh instead of intravenous. It is very painful and she will also most likely experience nausea so they will have anti nausea meds ready. I think it's going to be a long night! They want to do five of these treatments and I think they space them out every 72 hours. Doing the math that's another 14 days in here just for that treatment! I hope I'm wrong! Maddy was a bit vague when she related the information to me. Nothing we can do if that's the case anyway so we are just battening down the hatches and making a go of it.

I decided to spend as many nights here with Maddy as I can, even though I'm still doing the morning show. I'll go to work at 5am everyday and be back to the hospital by 1ish each day to help Maddy. If things get really bad I will ask John to juggle the staff around and take time off to just be here all the time. For now though I will work and stay here. The more crazy treatments they throw at Maddy the scarier this rejection scenario gets in my head. Maddy is so positive about it, I'm just trying to feed off her energy. She says she has been though this kind of stuff before and she is always fine. She just can't seem to do things the easy way. Lol

Thanks again for all the prayers. I'll keep updating as developments occur. Hopefully her body will not react too badly to this chemo treatment.

Oh, yeah. We took a walk and saw some pretty things around the hospital this afternoon. I took time for find the beauty in our dark moment. The above is the result.

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Day 7 and no end in sight!

This SUCKS! Dr. Floreth just came in and let Maddy know that she is in the 20% that needs more pheresis to get rid of the antibodies. As a matter of fact her antibodies are not only still persisting, they have increased! This is really bad news. They will be doing another round of plasma pheresis. Possibly as much as ten days worth. He kept referring to time in weeks instead of days. That was not a good feeling! He also mentioned the possibility of needing more chemo therapy to combat the antibodies. Maddy had a mild reaction of a fever and just plain feeling bad with the chemo last night. The doctor mentioned a more aggressive form of chemo being used if needed.

The plan now is to do the plasma pheresis and check her antibodies every few days until they see clear results. They are working with immunology to make sure they cover all the bases and attack this rejection as aggressively as possible. The pheresis doctor has already come in to get the ball rolling so we don't miss another minute getting started!

He also wants to see greater improvement in lung function before sending her home. The pneumonia is under control and the pneumothorax is completely cleared up. So her persistent low lung functions are a direct result of the rejection.

I guess that's it for now. Hopefully they don't have to make her too much worse in order to get her better. Just being in the hospital is taking its toll on her. She is totally miserable and can't stand the thought of being in here one more day. I think she is feeling like she did before the transplant. It seems hopeless sometimes. But she has always been a fighter so I know she won't let this keep her down! Meanwhile we will be here until this pesky rejection episode is beat down!

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Sunday, day 6

This is Maddy's Sunday brunch! She realized this morning that she does not order food that requires chewing in the morning. Too much effort! Lol

I got the low down from Dr. Floreth this morning so here is the scoop. He said they are aiming to get her out of here tomorrow. The thing that may get in her way is the antibodies. After the last round of pheresis they send off a blood sample to check for antibodies. He said 80% of patients come back free of antibodies after five rounds of pheresis. The other 20% have to do another five rounds! Yikes! I hope the law of averages is on our side! If there are antibodies still showing up in today's round of blood work they will order another five rounds which will keep her in the hospital through next Sunday or Monday! Ugh!

As for the other IV she is getting today. One is called Intravenous immunoglobulin (IVIG), here is the Wikipedia page. Basically now that they have removed her antibodies that were attacking her lungs they will replace them with immunoglobulin so that she still has some protection against infection. The other treatment she will get today is a mild form of chemo therapy designed to further destroy any remaining antibodies that may be floating around in her body. I can't remember the name of it because he said it too fast. She has had both of these treatments back when she had the first round of plasma pheresis immediately after her transplant so she should not have a bad reaction to them. Fingers crossed!

Other than that it should be a quiet day here at club TGH. She was in a good mood this morning and was very chatty. It may have had something to do with the grande iced chai I got her from Starbucks! Now she is taking a little nap before her next round of treatments.

1:40PM

Found out what the chemo is that they are giving Maddy. Rituxan, it's commonly used in the treatment of non-Hodgkin's lymphoma. Basically like I mentioned before its being used to attack the antibodies and fight the rejection episode Maddy is experiencing. There is not much information on the web about its use in this application so I won't bother with a link. She is getting her IVIG treatment now and the Rituxan later.

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Day 5

Last plasma pheresis treatment! Two more days in the hospital and Maddy should be able to go home. She is really tired of being in here. Like that's a surprise!

Not much to report over the last two days. I got a text from Maddy Friday morning saying they had done her EEG. Then her BF hung out with her for the day, which gave me a chance to get my laundry done and go to the gym! Last night about 11PM they took Maddy down for her MRI. They have a weird sense of timing at the hospital. But it kind of makes sense. They do all the outpatient MRI's during the day and get in all the emergency ones they need done between those. So when they have a patient in house they just take them down when ever it's convenient.

I got back down here about mid morning and Maddy was napping. We had a nice walk around the hospital. Literally, we went looking for the food trucks that are supposed to be here every day and they were no where to be found! Apparently they have late hours on the weekend and we were too early. We ended up walking the entire perimeter of the hospital. Poor Maddy, she was a bit upset with me after that one! We finally ended up at McDonald's of course. Yuck! But I did get this cute guy for our troubles.

The neurologist came by after we got back and told Maddy that her brain looked beautiful! She compared this MRI to the one they took two years ago right after the seizures and there is no remaining damage. The EEG came back clean too of course. So they are going to taper her off the anti seizure meds over the next few weeks. That's two less medications Maddy has to worry about.

Now we wait for her blood work to come back showing they got rid of the antibodies that were causing the rejection. Make sure the X-ray shows no more signs of pneumonia. There is some kind of treatment they are giving her for the next few days that is a follow up to the pheresis. Maddy couldn't remember what the doctor said it was but it is one of the same things they give people as a follow up to chemo therapy. I'll try to find out from the nurse and post it later. After all that we get out of here! I'm pretty sure Monday will be the day.

Here is a picture of a seagull just because!

 

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Day 3

Things went pretty well yesterday so I didn't bother with an update last night. After going into work for two hours, I finally got home and took a shower and a nap! It felt so good. Maddy's BF came down and hung out for a good part of the day, so she had company.

The only little hiccup of the day was shortly after I headed to work in the morning. It seems like her whole life the minute I step away from her bedside something weird happens. The respiratory team came in to give her Colisten treatment and a few minutes into it she had trouble breathing. The inhaled antibiotic can be irritating to healthy lungs so Maddy's tired lungs did not respond well at all. They got her a Xoponex treatment and that opened her airways. After that she was just fine. That evening they made sure to do Xoponex first and she tolerated the treatment without any issues. I came back to the hospital in the evening and hung out until after that treatment to make sure it went well. After that I went home to sleep because I was back on the morning show again today.

This morning while I was doing the show I got a text with the above picture. It's the place where her chest tube was. She said Dr. Floreth was the doc who removed it with Dr. Rolf observing. She told me he said take a deep breath and then let it out. On the exhale he pulled the tube out, but only made it half way before she was finished exhaling. Dr. Rolf yelled "pull harder" and Dr. Floreth had to yank it the rest of the way out quickly. Then Dr. Rolf proceeded to tell Maddy how whiny she was and asked her if she wanted any cheese to go along with it. It may sound bad on paper but you have to know him to understand. That kind of comment is exactly our sense of humor so it was totally funny and appropriate. He gets us. Maddy said that overall it was not so bad. And she is glad to have the tube out. Duh!

After work I had to run home for a few last minute items before coming to the hospital. When I got here Maddy was asleep. She got up for a little but and explained that she didn't sleep well at all last night so she is being really lazy today. I think she deserves it and apparently the staff does too because she has since gone back to sleep and no one will bother her. Usually it's a parade of people in and out of the room, waking her up when ever they feel like it and demanding she do this or that. Today they see that she is asleep and quietly tell me why they came by and very politely ask me to pass on the information. But tomorrow they work begins. Respiratory physical therapy came in and said they will start working with her tomorrow to rebuild the strength in her lungs. Lots of breathing exercises, daily PFT's and incentive spirometer work. It's good for her, but today they are allowing her to rest.

I don't think they have done her pheresis yet today. This will be treatment 3 of 5. Hopefully we are still on track for a Monday release. Maddy has company scheduled for tomorrow afternoon so I will not be coming back until tomorrow night. I will be able to spend the night over the weekend since I don't have to work so she will have me around to get things done for her. Ha Ha. I will probably not post again until Saturday. Thanks for the prayers!

3PM

A few things have happened this afternoon that I feel are blog worthy. As most everyone saw Maddy went for a walk with me down to McDonald's. see above pic. We took a nice stroll by the water behind TGH after that and it's been a very nice afternoon.

Shortly after returning from the walk a neurologist stopped by the room. You may remember Maddy's siezure on July 4, 2011 which was a result of viral meningitis which caused her brain to swell up. She has been on two medications for that episode ever since. Keppra for the seizures and Gabapentin for the migraine associated with the brain swelling. Maddy asked Dr. Rolf this morning when it was time to stop taking these since its been two years already. He called in a neurological consult to get the answer. A nice doctor from the group that treated Maddy back in 2011 came by and said they usually wait two years before tapering a patient off of the two medications Maddy is on. What good timing that Maddy happens to be in the hospital exactly two years later! So she doc started the weaning process and will lower Maddy's dosages today. She also ordered a follow up EEG and MRI to make sure there is no scarring on Maddy's brain that could cause another seizure and that her brain function is normal again. She will get both of those tests done while Maddy is here for this visit which saves us a full day at the doctor! So it looks like something good is coming from this visit. Other than getting Maddy better of course!

Ok I'll post again when we have results of these new tests!

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Day 2

The first night went as well as can be expected. Maddy's pain was manageable and she tolerated the plasma pheresis very well. She took a sleeping pill which worked pretty well. We were only up a few times through the night. Her O2 sats remained consistent and did not alarm at all in the night!

As usual the morning routine is up at 4AM for blood draw, which thankfully they can take from the central line. Then at 5:30 they get her up out of bed and into a chair for the doctor. He likes the patients up and alert for his morning rounds, which can start as early as 6AM! Today he didn't come by until 8:30.

By the time Dr. Rolf came by Maddy was in pretty good spirits even though she is still experiencing a lot of pain at the chest tube site. He told her he will put her on a Fentenol patch to manage the pain, that way there will be less peaks and valleys in her pain management. He also took the suction off her chest tube and removed her from the O2 telemetry. Two less things connecting her to the wall! She will remain on oxygen for another day just to make sure she doesn't have to fight for breath and she can concentrate on getting better. The plan is to remove the chest tube tomorrow if the chest X-ray shows improvement. Continue plasma pheresis for five treatments. He said she should be out of here by Monday!

I took the morning show off today so that I could stay with Maddy over night. I will be going into the station for a little while today to add music and the such. Then I'll go home and shower and come back. Tonight I will leave Maddy by herself and sleep in my own bed so I can do the morning show tomorrow. I will take half days from here on as long as Maddy continues to improve. Even with the pain of the chest tubes and central line sights I can tell she is feeling a little better already.

Here are some more gross pictures!

Chest tube site.

 

Central line site.

 

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