ER, DC and BMs

BM stands for bowel movements in case you didn't get it... How's that for a blog title??

After finally talking to the doctor with the (good enough) results from JP's CBC last week, Josh and I took a quick trip to Washington DC. Whaaaaaaaat?? You left your son who is fighting cancer?? Yes we did. Also, we left his sister. Don't worry, they were left in the very capable hands of their grandmother and we flew standby with the plan that if something happened to JP and we needed to be home we could always purchase a ticket and get home in a matter of hours. I thought we'd be able to get away from cancer for a minute and remember what it is like to be carefree again, but I was constantly missing my kids and looking around at everything through my "cancer-mom" eyes and I was so grateful JP was not with us. Everything around us is covered in germs - especially airports and subways - and I am sure I would have been a freak about sanitizing every surface if he had been with us.

We went to see the Braves play the Nationals... it basically rained on us the whole time, but that just made me and my frizzy hair more beautiful for Josh to look at.

  

Did you know the Nationals have a statue of my husband? Well they do. Because he is that awesome.

Anyway, JP is considered neutropenic - meaning his ability to fight infection is basically non-existent and if he gets sick it will manifest itself by a fever and if it's 101 or higher that means an ER visit. I asked the doctor if he thought it would be ok if we left for a couple days and he said if it were his child, as long as Grandma knew the rules, he'd go. We decided to chance it and left Sherri with the warning signs to look for and instructions not to go anywhere or let anyone come over just to keep germs at a minimum. I guess I should have known that if I tried to leave his side he'd get a fever...

We left on a red-eye flight Thursday night and Friday he was fine, well Delayed Intensification fine. He was complaining about his tummy hurting and wanted to be held most of the day, which is what he's been doing this whole phase, so we figured he was ok. Saturday he wouldn't walk and complained about leg pain also. We knew he had been constipated and thought that could explain why he wouldn't walk and maybe the tummy aches too. He's been on Miralax for a while (basically since cancer started since all the medications cause constipation) but the doc always told us to give Miralax until he has a bowel movement, then stop and start again when he seems to be having troubles. Well, with 3 poops a day we figured that wasn't his problem.

We had a fun day on Saturday with Colette around DC and on our way back to the hotel (at 11 pm) got a phone call that JP was having a fever of 100.3... talk about your heart dropping into your stomach. Here we were, 2,000 miles away from our boy that probably needed to go to the emergency room, and all we could do was make phone calls. The thing about a low-grade fever is that if it's 100.4 for more than an hour or EVER hits 101 he needs to be in the ER. We are never, ever to give him Tylenol because that will mask a fever and they need to know what is causing it. I called our neighbor (who used to be an oncology nurse) to go check on him and when she took his temp it was 100.8. Yikes. We decided to try and fly home on the first flight out in the morning (just 5 hours away at that point) and I called Primary Children's to speak to the on-call oncology doctor. She said since he hasn't hit that "magic" 101 and was acting ok, that we should wait it out and see if it was going to get worse. That gave us some time to get back to the hotel, pack our things and head out for our flight home. Turns out we didn't make the first flight out, JP woke up much happier with just a 99.7 fever and by the time we did get on a flight and got home later that night he was still acting pretty good, aside from the tummy complaints. We were so glad to be home and even more glad that JP was feeling ok-ish.

Oh, Colette. 26 years is a long time to be friends with someone and we still act like kids when we get together. Some things never change and I just love her! Now if only I could see her more often...

We managed to squeeze in two baseball games and most of the monuments in our very short trip

On Monday, JP still complained about his tummy hurting. I called into clinic and asked for our doctor or a nurse to call us back - it still seemed like his medicine wasn't helping. Of course, they took all day to call us and by the time I got ahold of someone, it was after hours and the doctor advised we head to the ER because, even though he didn't have a temperature, there may be something else going on besides the normal heartburn side effects. We got to the ER and they decided to do some x-rays. He was so good to lay so still and gave us thumbs up every minute or two. The doctor came in and says, "Well, he is very constipated!" We both looked at her like, how? He literally had been having poop after poop all day. She almost couldn't believe he'd been having bowel movements, but we assured her we'd changed 4 poopy diapers in less than 24 hours. She thinks that the Miralax is softening his stools, but that the soft stool is going around the hard stools and coming out. Poor guy, no wonder his tummy has been hurting so bad! When I can post them, you'll have to check out the x-rays - the dark spots are all hard stool in his intestines - and he is clear full up through his ribs. He is so constipated even though he is still having regular bowel movements! Weird. They couldn't decide what to do since he is immuno-compromised - it's too dangerous to do an enima because of the risk of infection and surgery isn't really an option either. They gave us some Exlax to use in addition to the Miralax and told us to call clinic if he's not feeling better by Wednesday. We're so glad it's not something serious and that they sent us home instead of admitting him. Funny that we are so looking forward to messy diapers, it's the small things that make us happy! Next time you or your kids poop, just think about how blessed you really are. Haha :)

To make matters worse, he's lost his hair. Maybe that doesn't actually make things worse, but it makes this cancer thing more obvious on the outside. His bald little head breaks my heart, but it is so soft to rub I think I will rub it for good luck every single day. We decided to shave Josh & JP's heads again - JP was not happy to have his shaved but had a good old time shaving his dad's! I don't know how long it will be before his hair comes back but I already miss his bright blonde hair. :(

I hope this post isn't too scattered... JP seems to be feeling a little better so hopefully we can move past this terrible constipation problem soon.