Coming home

Coming home is a 2 edged sword. On one hand it's wonderful. We get to sleep in our own beds and begin this new chapter of our lives. But on the other hand you are going home to something so new. It's almost like when you are bringing home your brand new baby for the first time. But this time it's not a good homecoming. Driving home I had a empty pit in my stomach that I could not shake. I now was the primary care person. No more nurses no more doctors that come in everyday with the medicine already measured out. It is now my turn to do both jobs. My turn to decide when it's time to call the doctor if I believe something is worth calling. Leo went back to work today but luckily I have my mom to help me begin this process. Coming home started out good until we got out the medicines. Normally at the hospital I had no problem giving them to her. Of course tonight she decided she didn't want to take it and spit out her chemo everywhere. I had to make a hard decision here. Either give her another dose or think she got enough. Hard to decipher, but made the decision to do half a dose. The only bad thing about this, is they give you exactly enough medicine to finish this phase of the chemo. Putting her to bed was relatively easy. She woke up once to go potty but other than that slept fine. Unfortunately the day did not go quite as well. She was very irritable and in a lot of pain. Pain that I couldn't do anything about. Even with all the medicine I was giving her it just wasn't working. She seemed to be having a ton of gas and lots of diarrhea. And every time she had an accident she would get even more upset. One day out of the hospital and I've already called the doctor twice. But as he put it, this is a different ball game. You can't be the crazy mom who calls all the time when your kid has cancer. You can just never be too careful. For the next 4 weeks we will go to the clinic twice a week. Monday's to check her levels and give blood and platelets if needed. Thursday's to get another round of the vincristine chemo. Hopefully during this time we stay out of the hospital. Her immune system is compromised. She has none. Her ANC levels were at 24 when we left the hospital. Normal for a kid her age is 1500 to 6000. So needless to say she is at risk for every type of sickness that is out there. If we leave the house she must wear a mask. Hand washing is a must! Sometime within the next few days or possibly weeks, she will lose her hair. And I know this is no big deal, but I know this is what will be the hardest for me. It will all hit me that she is REALLY sick. Right now she seems pretty normal for the most part. Pray for us for these upcoming weeks and months and years. They are going to be tough. This disease she has is life threatening, but statistics are in our favor.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. ~Proverbs 3:5-6