Home again

Andrew and Lizzie are home again. It is so nice having the whole family at home together. We will probably report back to the hospital in a few weeks (unless he recovers a lot faster than last time).

Quick Update

Andrew is happy and doing well, but we are getting a bit stir-crazy. We were told Wednesday that we might go home Thursday morning and then on Thursday that we would probably go home Friday morning. But, we are still here at the hospital. Essentially what happened was that Andrew's overall white blood cell counts were going up steadily. His red blood cell counts were rising slowly and his platelets have been normal (even for a healthy person). On Thursday, though, he had no neutrophils and so they decided to wait until Friday, then Friday, his overall white blood cell count dropped a bit. This is perfectly normal when recovering from chemo, but it meant that they would have to watch him for a little bit longer. Today 30% of his circulating WBCs are monocytes, which usually come up right before neutrophils. If his count hadn't dropped, then he would probably be home now, but ohhh well, staying here is what is best for the moment. We really haven't been here for too long this round and Andrew has stayed healthy through out so I shouldn't complain. I guess its just hard to stay here when Andrew seems so healthy and normal.

We are constantly reminded of how precious life is. Our time together is so short. We are constantly praying for the Lanes, who have decided to take their sweet little girl off of life support today. We are grateful that she doesn't have to suffer any longer, but we know that we will miss having her here.

Progress...

Most of Andrew's counts are slowly increasing and so there is a chance that we may be able to go home this week. Some people were wondering how his weight has been, well so far he has been gaining weight just like he would if he were healthy. Andrew definitely has times when he is not as hungry, but then his metabolism during that time is a bit lower and so he doesn't burn calories as fast. Developmentally Andrew is now able to go from sitting to crawling and back to sitting. He is learning how to crawl on his hand and knees as well as climb things like chairs and his parents in order to stand up. Ohhh and his new favorite sound to say is "da"

Here is a little clip from about a week ago which I think would cheer up any day

Lately

Andrew's mostly back to his normal cheery self. Except for the first 5 days during the first round, this round has been almost exactly like the last. This has meant that for about a week after the chemo ended he has been uncomfortable a lot of the time, but it is certainly very manageable. One of the nurses was telling me that kids, if they're distracted, aren't really able to feel pain as acutely as adults, and I totally agree with that. When other people have been in the room or he's really excited about playing with his toys, he is fine, but I think that when he thinks about how he's feeling, he realizes that he doesn't feel that great and gets pretty crabby. Otherwise it's been an uneventful round, and around here, we like uneventful!

His ANC (absolute neutrophil count) has been at zero for the last 4 or 5 days, but he's only needed one RBC (red blood cell) transfusion and one platelet transfusion so far, which is great! I really don't know how he up keeps his hematocrit so well (a measure of red blood cells). Almost always, kids in here need several transfusions to keep from bottoming out with RBCs and especially platelets. It was a little scary the other day when they drew his labs in the morning and he was at 15,000 platelets/uL (the normal range is between 150,000-400,000 platelets/uL, and he's normally in the 300,000s). That night he started bruising and then got a nosebleed, so I asked if they could transfuse overnight, but they convinced me to wait until the next morning. Apparently, only if they're bleeding uncontrollably do they do a transfusion without having the platelets at a certain level. It also totally depends on the attending doctor--sometimes their threshold for transfusing is 15,000, some have it as 12,000, and some only transfuse at 10,000 plts/uL (which is considered 'critical'). Andrew got down to 9,000 before they transfused, but whoever donated his platelets had good, fresh ones, because he jumped right up to 99,000.

The hair he's grown between rounds has turned out to be this white-blond fuzz. They say when hair falls out on anyone getting chemo that it can often grow back another color. I haven't had the heart to shave his little soul-patch in the back that refuses to fall out:

We are now up for visitors! There are some extra rules for the flu/RSV season, so please stay away if:

-You're under 14 years old
-You have been sick in the last two weeks, or you're starting to feel something coming on
-You've been around anyone sick in the last week

Otherwise, as long as you wash your hands really well and wear a mask, we'd love to see ya!

Army Crawl

Well Andrew is feeling well enough to start to army crawl. We just have to figure out what he wants to crawl to. Pretty much the only things that work well are the remote, my cell phone and a trail of cereal.

Andrew loves nurses. Every time a nurse comes in he gets so excited that I think that he is going to hyperventilate (video pending). Anyway, its a short update, but there really isn't a whole lot to report when we are just waiting for counts to come up...I guess that we can be thankful that there really isn't much to talk about.

ps-If there is anything that you think would be nice if we included in the blog, just let us know in the comments.

A happy family

Andrew is doing well. We are doing well. Andrew is doing the frog bounce thing on all fours. He is really close to crawling. Most days we let him move around on a little gymnastics mat on the ground. Today he had a onesie, which he really wanted to put it in his mouth. So, I dragged it across the mat so that it was within his reach but too far for him to eat it. He army crawled clear across the mat right after it. It was quite cute.

Overall Andrew is healthy, he still has a runny nose from a few days ago but other than that most people, most if the time, wouldn't notice that he is sick. That being said, to us, he is feeling a bit uncomfortable. He is happy and smiley most of the time, however if you aren't paying attention to him, he complains and gets quite clingy. In addition, when night time rolls around he becomes very difficult to console. This is normal though. The majority of the chemo's side-effects tend to start about a week after treatment starts and end about a week and a half after chemo ends. It seems to us that as long as he is distracted with playing with us or his toys, he doesn't realize that he is uncomfortable, but when he loses interest in his toys or is ready to sleep, he feels the discomfort and lets us know that he is feeling bad. I don't blame him, with all that he is going through, I am surprised that he isn't complaining more.

We are very grateful for all the love and support that we are receiving from friends and family. I know that we say that a lot, but it is true. The generosity of so many of you is always on our mind. We are grateful for all the prayers on our behalf. We also really appreciate all the meals and other generosity that so many people have given us.

Sick again...

So Andrew and I are sick again! This has been the third time in the last month. I really don't get it--I eat great, I exercise, try to get enough sleep, and wash my hands like a madman. Don't know what the deal is. Really stinks because it makes it so I just hang out in my little room and don't visit anyone...

Otherwise, though, this round has been mostly uneventful. He's still not eating very much, and the fuzz on his head that he got between rounds has yet to fall out. He's had a few reactions to the ARA-C (Cytarabine) that have made him red on his arms, legs, and face:

The half-life of the ARA-C is pretty short, so these reactions don't last long, and are usually cleared up by hydrocortisone.

I've had a lot of exercise in patience this round. For some reason, it just seems like everything goes wrong when I put him down at night. It will happen multiple times that I will have just put him down, but they need to give him a medication, or change his diaper, or give him eyedrops, and he'll be awake for another hour or two. Last night was a long, drawn-out unhappy saga that lasted until way past midnight, when he had originally gone to bed at 7:30. It's times like these I end up calling Stew and he comes up to try to help me out while I get a bit of sleep.

Andrew's line also broke a few days ago. The blue lumen (the smaller of the two lines) has always been sluggish, so the nurse was pushing through it and the pressure made a hole near the top. I'm just grateful she had already pushed the ARA-C through. I'm not a fan of chemo being sprayed all over him. I'm positive that it wasn't her fault, though--the line had been twisted and occluding all day long.

So, Andrew was off fluids for 4 hours while they fixed the line and glued some things on. So, to keep the line out of his reach, they made him wear this funny wife-beater. Andrew wasn't phased though. He didn't know how goofy he looked.

Round 2

So we're finally back in for Round 2! Instead of staying home for a week like we were expecting, we stayed out for 4 weeks. We were really anxious to just get back in and get it over with. I was curious to know if there was any sort of correlation between count recovery time and prognosis, but our primary oncologist, Dr. Barnette, said that there isn't for AML. Apparently chemo hits infants hard enough that they will often take longer to recover than other age groups. I just hope the first round was a fluke. If each round had a month-long break, we'd be here and there and anti-social for 7 more months...

So this round is almost exactly the same as the last round: Etoposide for days 1-5, Daunorubicin on days 1, 3, and 5, and ARA-C for 8 days (for the last round, it was 10 days). They call it "Induction 2" (the last round was "Induction 1"). We're in the pod they usually have for bone marrow transplant recipients, so the room is bigger this time--big enough to rival our last apartment for size. Also, we're right next to the Grays (one of the other 6 month olds in here), so that's awesome.

Andrew's definitely not feeling good right now. He's pretty fussy and definitely more lethargic than even yesterday. I asked for his anti-emetics to be spaced closer together so he doesn't throw up so much. He's swelling up a decent amount, but not as much as last time. He's only gained a pound so far, which is fantastic. I really am glad they hydrate him so much--I don't want the chemo in his system to just be hanging out, waiting for something to do.

In all honesty, though, my first night here was horrendous when it came to sleep. Andrew was up almost the entire night (I wonder if he knew it was New Years' Eve?), and it just so happened that the chemo started at bedtime to run all night. For the Etoposide (which they started at around 10:40pm), they needed to check his blood pressure every hour, which he woke up for. Apparently he forgot how to sleep through that, eye drops every 4 hours, and a diaper change every two hours. I tried to sleep next to him on the ground to try to keep him asleep, but to no avail. I also wanted to sleep next to him because he rolls so much these days and I was paranoid about him having the cords wrap around his neck.

These and other problems basically solved themselves overnight when I put him to sleep on his tummy. I know they tell you not to, but I've found him on his tummy a few times in the morning anyway. Also, I remembered hearing my cousin's wife, Karly, say that all her kids sleep better on their stomachs, so I decided to try it. Not only does he not roll in the middle of the night, he also stays away from his cords more often and can sleep through blood pressure and temperature checks. Hallelujah!

One of the nurses, bless her, tried to change his diaper when he was on his tummy. She ended up putting it on inside out, and you know, the polymers don't absorb on the outside...

It's been a good Sunday. We're just hoping he stays healthy and that the other little 6 month old in here gets better soon (Aubree).