A whole year gone by

Exactly one year ago today, Andrew left the hospital for the last time.  When I re-read posts I've made on here, it still surprises me how easily the tears come.  I'm still not quite able to put myself back where we were a year ago, but I am so grateful we've made it this far.  Every milestone since one year ago has put cancer further and further in the back of our minds.

He had his one year post-treatment ECHO last Thursday to see if he had any heart damage from the chemo--a well-documented side effect of taking anthracyclines.  There is a lifetime limit of anthracyclines you can take, and the damage can appear years after treatment.  Other than relapse or a secondary cancer, this is our biggest worry.  Andrew took daunorubicin and mitoxantrone (also known as the red devil and the blue devil).  They really are very effective drugs--when they work, that is.  For some reason, I always felt like the other chemos in his cocktail were just seasoning.


Andrew did so well during the ECHO.  I was so worried the whole week that he would need to be sedated, which I absolutely hate watching, but he didn't have to!  The fellow was telling me that he would almost surely need to be sedated at his age so he could sit still, but after asking some other cancer moms and the technician who did it, it seemed silly to worry about.  I was reminded again why I love Primary Children's so much--we had a very compassionate and competent tech who, instead of just sticking wires on his chest and holding him down, took the time to talk him through it and show him exactly what he was going to do before he did it.  I'm guessing the sucker and the movie in the background helped a bit, too.  When I was watching his heart--the first time I have really seen it since I was pregnant with him--I just wanted to say 'Keep going!  Keep going!' hoping that that little pump would listen and keep working hard.  I don't know what the results were (they haven't called me), but his heart just looked so perfect I can't imagine any other outcome...  It's amazing--as horrible as this whole cancer thing is, it has made it  impossible to not turn to the Lord almost daily for reassurance that everything will be okay.

St Louis

I would post Andrew's numbers here for his 8-month CBC, but I have no idea what they were anyway. I've gone from breathing down our nurse's neck until I got my printout to assuring them that no, I don't need another printout, thank you. Our visits to the oncologist have become,well... boring. "Boring is good, we like boring," they always say. I think that despite the uselessness of seeing a doctor for a blood test, for them, seeing old patients that are healthy again probably makes their day. I've got to admit, though, when I look on my calendar and see that we have an appointment coming up, I still get something. The closest thing I can think of is an itch. We feel like Andrew's in the clear, but then we think hmm, he did have a lot of bruises on his leg the other day... and he's been pretty crabby lately, and kind of a bad napper... he's been sick, too... The itch just doesn't go away until we get that CBC.

I think that it really is true that gratitude and happiness go hand in hand because I've been feeling a lot of both lately. We still thank Heavenly Father every day that Andrew is healthy and that we get to keep him. It took me a while, but I finally buzzed his hair. It was starting to get out of control and in his eyes.

Stew and I spoke at a Red Cross dinner where we got to thank platelet donors for what they do. These were people that donated more than 12 times last year.When we asked them why they did it, it was humbling to hear the responses "I've been given such good health, I just wanted to share" or "It's just become a habit for me," etc. It was amazing for us to just think of how many lives were saved just by people in that room.

So, I went out to St. Louis to help out my sister with her new baby girl for a week and a half. Things were going pretty well until 3 days in when Andrew quit eating entirely and got a fever. He also had a ton of bruises on his leg, which I could partially explain away from being in a new place, but still... We hopped in the car and drove to Saint Louis Children's hospital and got his blood drawn for a CBC. He was still in the clear, we found out, and I was just kicking myself for having a hair-trigger response to a normal infection.

The fever didn't go away though. After a few all-nighters (and a few days where I was totally useless to my sister), I finally called the hem/onc people again, and asked them what I should do. Things were getting worse--his respirations were quickening and until the tylenol kicked in, he was even gaspy, and the fever had just been going on for 5 days by that time. Some poor resident told me (at about 2:30am her time) that sometimes kids just get stuck in a cycle where fever and dehydration just feed each other and they just need to be rehydrated. She told me to go to the ER where they'd have the proper equipment to rehydrate.

So I got a free all-expenses-paid stay at St. Louis Children's Hospital. His left-lower lobe of his lung was wet, and the X-ray confirmed pneumonia. He was saturating in the low 90s without oxygen, so that was a bit worrisome. They also did a little swabby and it came back positive for RSV. Phew! I know it sounds strange, but I was so happy to have a reason. We had some fantastic doctors both in the ER and in the catchall unit upstairs. It was funny that at one point, when the doctors and residents were rounding on us in the ER, Andrew kept on saying "Outside??? Outside??" The attending started laughing because he could tell what he wanted, and he knew that he wouldn't be able to go outside for a while. They put us in isolation for obvious reasons, but it just so happened that the room we were in was, not even joking, a "double suite" as they called it. Sadly, it rivals our apartment for size (the picture makes it look a lot smaller than it was).

I've got to admit, accommodations were a lot nicer here--my bed was a lot longer, right next to a great view, and there wasn't any bump in the middle of your back. Of course, that is where Andrew wanted to sleep.

I was grateful for the nurses at Primary Children's who scrub the hub, catch all of the pumps at night, and do accurate reporting of intake. It was a little disconcerting when I saw the ER nurse very briefly brush the end of the hub with a little alcohol swabby (you are supposed to scrub it for 15 seconds and let it dry for 15 seconds). The resident the next morning was really worried about us when she saw on the report that Andrew hadn't eaten or drunk anything. He really had perked up and started eating within an hour or two of getting fluids and his fever was completely gone. When they were rounding on us and debating whether or not to let us go, the door was slightly open, and Andrew was running back and forth all across our room squeaking and squealing and playing peekaboo with everyone rounding on him outside the room. He also grabbed a scooter toy and kept banging it into the wall, and threw other toys around the room saying "uh-oh!" I couldn't have asked Andrew for better timing to be a crazy toddler than just then. Maybe he knew that was his ticket out of there because we finally left a few hours later.

For my Saint Louis souvenirs, we now have an awesome new sippy cup, a pack of free diapers, and a stethoscope. The attending doctor, poor guy, also has an RSV souvenir, as Andrew coughed right into his face. D'oh!