3-19-16

Well thankfully I don't have too much to report! But since I have a minute with Drew napping and Molly playing, I will add an update. Drew's instances of getting sick have greatly decreased since that first day home, but he still has gotten sick about once a day, and once overnight. The doctors say that this is normal for kids going through Chemo--lingering nausea, and foods tasting different to them. And also for Drew in particular since he probably still has a weaker stomach due to that bowel obstruction, He seems a little more down today, wanting to sleep and be held. As long as he doesn't have a fever, the doctor said this is okay. It may be related to his blood numbers going down, I guess you feel pretty crummy when certain counts are low, and they also suspect he may be fighting a virus of some sort, nothing concerning. Pray that a fever doesn't show up! Otherwise, we've been taking him in every morning since Thurs for lab work in Rochester. Apparently a certain number they are watching to time the stem cell collection can't be taken in Austin. But when all you do is drive there, take blood, and come back, you can be home in under 2 hours. Not too bad in order to be home! Right now the numbers aren't coming back up yet--when they'll schedule the stem cell harvest. Where they are at now, they are thinking it may be more like Tuesday or Weds when he'll be ready. So we'll go in for labs until then, and enjoy the time at home. The process itself I'm told will be a 3-4 hour collection where he'll be hooked up to a big machine with a larger catheter they have to place in the port in neck filtering the stem cells from his blood and putting the blood back in. They will do this once, then see how successful they were and decide whether they need to do another collection. It'll be on me to keep him entertained and relatively calm in bed as this goes on--pray that isn't as it difficult as it sounds!

At home, it's been great to have us all together. There is such a peace about everyone in their beds asleep as I fall asleep myself. There has been a huge learning curve for me as I manage Drew's new care needs. One of my first lessons was to be prepared when I leave the house with extra clothes and a towel! All the feed tube tasks, medication ( an injection and all the oral meds through his tube) and his central line care are becoming easier to do on our own. One perk of being in the hospital is that the nurses take care of all this! Having both kids together is great, but also taking some adjusting. Both have been on their own with whoever's watching them for quite a while! Sharing toys and attention for both of them has taken some work. At the same time a brother-sister fight is kind of refreshing! Continue to pray for Molly especially as we can tell she sometimes struggles to cope with all the changes.

Hope everyone is enjoying their weekend! Here's them watching Thomas the Tank Engine this morning!

~Heidi