Saturday, June 23, 2012

What a busy week we've had!

Last Saturday was Neya's dance recital. We spent a fun afternoon and evening with nine members of our THON family who came to see the recital with us. They helped make Neya's big day extra special! Neya was beautiful, and did a great job in the recital! I'm SO proud of her!

Neya's recital portrait

6/18/12-Neya and some of our THON family

6/18/12-Neya and another special PSU student

Sunday was Father's Day, and we spent the afternoon with family and friends. We shared lots of laughs and a yummy dinner! Sunday night after the kids were asleep, I did laundry and packed some toys to take to the hospital for Collin's chemo admission.

Monday morning was Neya's first swim lesson. I had one hour from the time we got home from swimming until we had to leave for Collin's clinic appointment before admission. While I was trying to finish packing the rest of what we needed for the hospital, Collin stood in the living room yelling,"Num on Mom, I weady to go clinic!" He couldn't wait to leave! Later, when he walked into his hospital room, he looked around and said, "I yike dis woom. I yike dis bed." He was pretty happy to be there...frankly, it was kind of...weird (but I'm not complaining!)

6/18/12-Collin and his new book

6/18/12-Of course we bring Potato Heads to the hospital with us!

A close up of the Potatoes, by Collin

Overall, things went smoothly. Collin was happy despite being in the hospital, and I felt like we were staying with friends for a few days because we got to see many of the nurses we love. Collin hasn't been eating well over the last few weeks, and has lost a little weight, so we are keeping an eye on that. He had his Cytoxan (chemo) from 10-11 on Monday and Tuesday nights. Once the chemo was done, the Mesna (rescue agent) ran for 12 hours, and he was also given Lasix to flush out his system. Of course this meant his diaper had to be changed every hour overnight, but luckily our nurse was able to do it without waking him too much, so I got a little "rest." The biggest challenge was just keeping him occupied. The chemo didn't make him sick until Wednesday morning. He threw up at 3:30, and then again at 7:30 in the morning. It wasn't a lot, and didn't seem to bother him much. The worst part was that after both times, he said "I no mean to, it was a accident" like he felt bad for doing it. We came home Wednesday after lunch (despite the fact that Collin said he didn't want to go home!) and thankfully he has been feeling fine.

Thursday night we started the GCSF shots that will help Collin's bone marrow kick out lots of new white blood cells. As in the past, Bill gives the shots because I can't bring myself to do it. But Collin is handling them very well! Tonight I called him into the kitchen so I could put lidocaine cream on his leg. He came in right away even though he knew the lidocaine cream meant he was getting another shot. After I finished, he wanted to pick the bandaid that he would get after the shot. He asked if we would do the shot on the couch like we did the night before, and I asked where he wanted us to do it. He chose the couch, and when the time came, he sat right down. He said, "I don't want my shot" but he didn't try to resist at all. Neya sat next to him, got his bandaid ready, and held his hand. I cleaned the site with alcohol, held his other hand, and pinched the part of his leg where the shot would go. Then Bill gave the shot. Collin didn't make a peep until the medicine went in; it stings going in and that seems to bother him more than the needle. He whimpered for a second or two, but didn't cry, and as soon as it was over, Neya put his bandaid on and Collin said, "Yay, I did good job! I brave!" We gave him a Hershey Kiss afterwards for a job well done, and Neya asked for one too. Then she sat next to Collin and gave her Hershey Kiss to him!

Friday afternoon, Collin had his latest hearing test. He still has just the high frequency loss in his right ear. It's not affecting his speech, since he hears fine out of his left ear. The audiologist said eventually she'll want to fit him with a hearing aide, especially once he's in a classroom setting, but for now we can just focus on getting him healthy. I hope the radiation doesn't impact his hearing more, but I've been told there is a good chance it will. Time will tell, and we'll cross that bridge when we get there.

At the yardsale fundraiser in February, I met a wonderful girl, a friend of a friend, who later emailed me and asked if she could hold a Zumbathon fundraiser for us. The event was today, at a local firehouse, and it was amazing. So many generous, caring people, many of whom had not met us before today, gave their time and talents to make the day special. We continue to be humbled and extremely grateful for the love and support of those around us. Thanks to the many people who've contributed to fundraisers for us over the last few months, we have the funds to cover plane tickets, lodging, car rental, and whatever other expenses we encounter when we go to Houston for radiation. We are very blessed, and very thankful, to be able to take Collin where he needs to be without having to worry about the cost involved in getting him there. I've said this before...the words "thank you" don't seem like nearly enough. But thank you all, for the love, support, prayers, and assistance that are helping to carry us through this journey.

6/23/12-the awesome group of ladies that came to Zumba for Collin

6/23/12-THON family members who came to the Zumbathon

6/23/12-Fireman Collin got a tour of the fire trucks during the Zumbathon

6/23/12-"Driving" the ladder truck

This coming week will be another busy one; swim lessons for Neya Monday through Friday, a clinic visit one of those days and therapy appointments three of those days for Collin, and I've got to start working on making our travel arrangements. We are scheduled for a consult at MD Anderson on July 23, and after that it will be 7-10 days until they have everything ready to begin radiation. The radiation will take 6-8 weeks, so Collin, Neya, and I will be finishing out the summer in Houston. We'll also be watching Collin for a fever this coming week as his immune system crashes, and of course if that happens we'll be back in the hospital for a few days. One day at a time!