I love being home again, and most of all Skyler loves being home again! I have my happy little boy back and its been wonderful. His med schedule, however, has been anything but wonderful. Every 4 hours day and night I have to hook him up to an IV med. That means no sleep for mom, but just one look at that happy little face and its all worth it. I would gladly do this schedule for the rest of my life if that means my son gets to be home and is happy. Those 2 1/2 weeks in the hospital were rough but I am very grateful for the lesson I learned there. I learned that no matter how hard I try I cant keep every little germ away. I did everything in my power these last three months to keep Skyler from getting sick, but he still managed to get sick. So I told myself when we got home we were going to have fun. No matter how hard this would be for me I was going to get him back out in the world and enjoy life. And thats exactly what we have been doing. Yesterday we went to "Acorn Park" thats what he calls this park where there are acorns he likes to collect. This is his favorite park, and instead of playing on the playground he would much rather see how many acorns he can find. This was the first thing he wanted to do, have a picnic at acorn park. So we got some lunch and headed over there. He loved it and we found some good acorns. It made my heart happy to see him happy and have fun. Im so glad its starting to get warm now so we can do this more often. Today he wanted to get a churro from Costco. This made me so nervous even thinking about bringing him in a store, but I asked several docs and other cancer moms and they said it was fine as long as he wore a mask. So today he went in his first store in 8 months. I was a nervous wreck, but again just seeing the look on his face made it all ok. Bringing him out in public was really weird for me, Im not used to all the stares yet. At the hospital you dont get that because everyone is used to seeing bald kids with masks around, but out in the real world its different. People dont see little bald kids that often, I know I didnt before cancer became apart of my life. Everyone we passed stared at him and had that "oh how sad" look. Im just glad Skyler really isnt old enough to realize that he stands out in a crowd.
Ever since being home it feels like a little weight has been lifted off my shoulders. Im so grateful for the lesson I learned during our stay, and I know all the prayers said on our behalf have been answered. Skyler hasnt had a fever since being home. A true miracle if you ask me. I pray now that they stay away and that the CT scan on Friday shows the nodules have shrunk. I also pray that we can now continue on in treating his cancer without anymore bumps in the road. Normally with his type of Leukemia you should hit the maintenance phase around the 6th month. This is where they stay for the remainder of the three years of treatment. They say you can start living a more normal life in this phase. For Skyler he wont hit maintenance until over a year since diagnosis. This isnt how we planned for it but just even getting to maintenance now is a huge deal and Im so grateful for how far he has come.