Mmmm... blood!

Today we spent 6 hours at the hospital getting blood transfused. I guess technically only about half that time was actually transfusing, but you know how hospital visits go. This dang phase has been rough and the mix of 4 terrible chemotherapies made JP's levels "crash." His white blood count was at a critically low level on Friday but there wasn't enough time for clinic to see us then and we didn't want to volunteer to be inpatient, so we chose to wait out the weekend and go in Monday morning instead. He was super mellow, took a nap in Josh's arms and woke up happy and cheerful. Amazing what a little blood can do.

JP loves his Hot Wheels and kept saying, "I want to take these to my cancer kids so their tummies won't hurt and they'll feel better like me!" We found a really great deal from Toys R Us (great as in 9-cents-per-car-great) and have about a million Hot Wheels cars that we can donate to Primary Children's... Ok, so that's an exaggeration, but we literally have a few hundred. He is such a sweet boy - he actually hasn't been feeling super so him saying that just makes me smile even more. He doesn't feel great but he recognizes that other kids he comes in contact with at the hospital are probably feeling a little bit worse. He started the day off by handing some out in the waiting room then we found the child life specialist and gave some to her to hand out where she saw the need - which ended up being right where all cancer kids start their clinic days. They weigh the kids, see how tall they are and take their blood pressure in this little corner of a hallway. They usually have a bucket of things to cheer kids up but they haven't had anything for a while. Before we even walked back to the infusion area to give out more she had filled a brand new basket with the cars JP brought in - he was so happy to see them sitting there and it made me want to do so much more! This hospital has given so much to us - I'm talking physically in the form of books and toys not just the fact that they are saving his life - and I am very much looking forward to paying that kindness forward with things that make JP happy. He is the reason we are there and receive small gifts from time to time and his favorite things in the world are cars and sports so giving cars just makes sense.

While JP was getting his blood I met a new mom in clinic. It always hurts my heart to see all the kids being treated and I know the emotions as a mother can not be ignored either. She is from Montana (a 7-hour drive to PCMC) and is staying at the Ronald McDonald house. They are pretty newly diagnosed, just about 5 weeks in, and she told me how isolated she's been feeling. I know how she feels - when your kid has cancer everything changes. You can't really take them everywhere you want to or play with all the friends you want to or go about your normal lives normally anymore. The focus is on keeping your child healthy and that often means staying behind closed doors away from as many germs as possible. We wash and sanitize our hands all. the. time. We shiver when we hear someone sneeze. We need to control the physical environment that we are in because the situation we didn't choose to be in is out of our control. And that usually means we hang out with our kid(s) at our home away from outside contact. It can absolutely be lonely, and I can't imagine being in another state away from my husband and living in just one small bedroom with my son. Sometimes this 500 sq. foot house doesn't seem so bad... Anyway, I was so happy we met. Even if our kids are facing different cancers, we're both mama bears trying to hold it all together when everything could so easily be falling apart. And we get each other.

Tonight while Elsie was keeping me up late I came across this picture of JP. This was about a month after he was diagnosed and when I saw it I laughed and cried at the same time. It blows me away how much cancer has changed my son over these last 6 months. Looking through pictures I feel like it should be several years I am looking through because his appearance has changed so drastically so many times. From the ravenous appetite he had while on steroids to having no appetite for anything - he has literally been on both ends of the weight spectrum. We are starting to worry about his growth. He is in the 2nd percentile for height and the 5th percentile for weight. Now, he's always been on the petite side of things, but at what point are we supposed to really worry? The average kid his age is 3 inches taller and weighs 5 more pounds than he does. The doctors told us they start discussing an NG tube when they are around the 5th percentile for weight... which he's been for months. It worries me that he might be underdeveloped and then he opens his mouth and starts talking and I think what he lacks in size is more than made up in his brain! The kid is ridiculously smart. I'm not sure where I'm going with this, but it's a thought that is constantly running through my head.

This post has already become longer than I intended it to be and I haven't even written everything I thought I was going to! More to come later, including pictures from our day. For now I need to go move JP from my bed to his (he climbed out of his bed 5 times tonight complaining of tummy pain and finally convinced Josh to let him snuggle) and see if I can find some sleep as well. This insomnia thing is exhausting!