Kelsi started Kindergarten

Kelsi started Kindergarten last Tuesday. She loved it. She has two friends in her class from daycare and has made a few more. She said she wants to make friends with all of the kids in her class. I'm so glad that she wants to make new friends and isn't being shy about it. I'm excited for all of the new things she will learn this year. I know she'll catch onto reading quickly. I can't believe how fast the time has passed. Here are a couple more pictures from last week.

Poor little Cohen

Last week was pretty hard on Cohen. He felt yucky as soon as the medicines started. He had the same symptoms as last month with the study drug; he was in pain, needed oxygen, retained fluid, slept most of the time, and was grumpy. But with the 2 drugs together he had a few more symptoms; he got a lot welts (that would go away after benedrul,) had fevers, and felt really sick. He retained more fluid this time; it went into his lungs a couple times so they gave him lasix (a diuretic) which would help him pee. They sent him home on Saturday but he still hasn't fully recovered. He's just doesn't feel good; he's laying around and watching tv most of the time. He isn't really eating so we're going to start TPN and lipids again. I hate seeing him this way and going through so much. Hopefully he'll bounce back soon. Thank you for keeping him in your prayers!

Kelsi starts Kindergarten tomorrow. I will post about her first day of school then.

I think I spoke to soon when I said Cohen was going to be able to go home on Friday. Thursday night he spiked a fever, threw up, and had diarrhea. Friday and Saturday he seemed to be feeling better so they sent him home. He threw up again Sunday evening and has had a really runny nose. He was admitted today to receive the study drug (CH 14.18) and the IL-2 (Aldesleukin- drug he received last week.) He's still not feeling too well and in pain. He'll be here at least until Friday; it just depends on how well he does.
I've been meaning to post some pictures of his hair coming in. It's coming in the same color as it was. He looks so cute with his hair.

Hospital stay

I've been a slacker. Cohen has been in the hospital since Monday; I haven't posted because I didn't bring my laptop up. :o) He is receiving a drug called Aldesleukin (part of the study) which helps a certain type of white cells kill cancer cells. He hasn't had a reaction to the drug and is doing really well. The plan is for him to go home tomorrow, spend the weekend at home, and then be admitted on Monday. He'll start the CH 14.18 (yucky study drug) along with the Aldesleukin for 4 days and go home either Friday or Saturday.
Cohen is doing really well and his head is getting fuzzier everyday. The fuzz is getting long enough that it lays down rather than sticking up! I guess it's not so much fuzz anymore its hair. It's so much fun to see his hair grow. I will post pictures soon.

Kelsi's check up

Kelsi had a cardiology appointment today and it went really well. She is doing great and everything looks great! Her oxygen saturation is still in the mid to low 90's. Her heart is still very dependent on her pacemaker; it's pacing her 94% of the time. Her normal heart rate is in the low 40's and the pacemaker is still set at 70. The pacemaker has 6 1/2 yrs before the battery will need to be replaced. It's so nice to hear good news again with her. She is back to 6 month appointments (like before surgery.) It took almost a year to get back to normal but we'll take it.
It's so nice to finally have both of my kids at a standstill with their diagnosis's.

I'm a little slow posting this but I wanted to let those of you who aren't involved in my heart support group (Intermountain Healing Hearts) know that we are having a fundraiser. The Olympic Gold Medal Mile Fun Run/Walk is on Saturday September 6th at the Riverview Park in Provo; see the attached flyer to print and sign up. It's going to be a lot of fun and it's a great way to help support families of children with congenital heart defects.