Monday night, we talked to Dr. Rosen about giving Joey some medicine to help his tummy, and when he found out that Joey was in pain, he told us to go the hospital. It was about 9:30 and the kids were already in bed, so we figured out a plan and were at the hospital within about an hour. I stayed the night with him and got very little sleep. At about 2am they took us down for a CT of his abdomen because his belly was very distended, and he was in pain. Afterward, he rolled around in his bed and groaned in pain for about an hour. He looked over at me at one point and said (very seriously) "only God knows how to help me now". After than, he looked peaceful and was able to rest briefly. Then he suddenly had to go potty and had a huge BM - after that, his belly was normal and he felt great. He looked just like Joey again. It was like he had a close connection with God that only he understood.
The rest of the week as been up and down - he feels ok for a while and then he eats and gets a large belly that is really painful. The CT, x-ray, sample testing, etc, have shown nothing usual except massive gas bubbles in his intestines. They see nothing that helps them determine a cause and don't want to send him home without knowing what's going on. They have said that he may have an abundance of bacteria in his intestines because his immune system can't kill them. Right now, we're taking him off of diary to see if the chemo is causing him to be lactose intolerant. So far, the meds for that don't seem to be working, but it may be too soon.
The good news is, his blood counts are going in the right direction. His platelets actually made it up into the normal range today, so his body is now making them on its own. He was supposed to get his final round of chemo during this phase (induction phase) but Dr. Rosen has put it off until tomorrow due to his belly.
Jon and I have been working some this week - alternating shifts at the hospital and getting some help from Mom and Rick. It's good to not be here all the time, but it's also hard to not be here.
Yesterday was his 5th birthday and he was upset because he wanted to be home. We had a small little party for him in a room at the end of the hall. He had kids here and played for the first time in almost a week. It was good to see him act like a kid again. He made it through dinner, gifts, cake and ice cream before he started feeling bad again. At that point, he was done and wanted to go back to bed.
My niece Kennedie (who is so adorable) was given $1 from someone yesterday. When Joey opened his card from her, she had given it to him. Chad didn't even know she had done it - she did it by herself because she wanted Joey to have it. It was so sweet.
Joey also got a video from the little girl who says she's his girlfriend (he says it too). Her mom used to be Joey's teacher but they moved out of state recently. They posted it to my Facebook page. I tried to copy it here, but don't know how. She blew him a kiss at the end and made him really embarrassed. He had a huge smile, which I don't see often these days.
2 comments:
Hi there, I found your blog through a FB link. I've been reading your posts and just wanted you to know that my family and I are praying for you and yours daily! God bless!!
I had Hodgkin's Lymphoma in 2000. I can verify that the chemo treatment absolutely made me lactose intolerant. I switched to rice and almond milk (I didn't like the taste of soy) and only recently have been able to get back into dairy products.
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