Noah's Journey: First week home

We have been home a week now, and things are going as well as they can. The first few days home, Noah was still recovering from the chemo, and was still pretty nauseous. He woke up throwing up one morning, and for a few days was just laying around, not wanting to move. But it feels wonderful to have him home, and it felt amazing to have dinners together again, and have some semblence of normal or our new normal.

By Sunday, he seemed to perk up a little, and things went up from there. Monday, he had to have some blood work, and was obsessing about it all weekend. When Monday arrived, he was again lashing out at me that it was my fault he had to do this, and why was I making him, and he was pretty upset. When we arrived to get the blood test, I was fully prepared. Arm was numbed, we had a kit kat ready to go, and even purchased a little tool that you put on your arm that vibrates, which is supposed to change your brain connection to the pain. We got into the room, and he went crazy. Screaming, arguing with me, arguing with the nurse. I got him to sit in my lap, and they had to bring someone else in to hold his arm straight. I assured him that he had been through much worse, and we had taken all the right steps so he wouldn't feel a thing, but there was no rationalizing with him. He screamed as the needle went in, and then a calm came over him. I know it didn't hurt as much as he imagined, and tried to make that point to him, but he disagreed. We got through it, and I have been trying to process it with him all week because this is his new normal. He will need 1-2 blood tests a week during this chemo period, and he will have to come to terms with it.

His walking has improved greatly. He is more cooperative with his brace, and in general is walking ok. He is not that steady on his feet yet, but is definitly able to get around and wants to be independent. Over the weekend, he had 2 different friends come to play which was so positive for him. I think he felt normal again. He also loves receiving texts and videos from friends. Please text me for his phone number is your child can communicate with him.

My dad doesn't like to leave his side. He comes in the morning at 7:45 before I take the other 2 kids to school, and they play cards. Between my inlaws who taught him how to play poker in the hospital, and my dad who has taught him gin rummy, he is becoming quite the professional card player. He had a friend come from school to say hi which was awesome, and we welcome more friends as long as his white blood cell count stays high enough.

He had his first physical therapy appointment today. It was another battle to get him there, though it actaully was a very positive experience. He has been asking us to get him an electric razor that you sit on so he can go on the trail with his brothers, and the physical therapist thought it was a perfect thing for him. So that was a win for him. The therapist was teriffic with him, and at the end I think he even had fun. She works with kids who stuggle through cancer, and was able to talk to him with compassion, understanding, and even helped him feel better about his situation. I am hoping he will want to go next time.

We have one more week until we head back for a 6 day chemo round in the hospital, and at some point after that, they will take another MRI to make sure the chemo is working. Once again, we feel so fortuante and blessed by all of the love and supoprt. We have heard from friends and family all around the world, and it is a huge boost for him and all of us.

Some highlights from the week: