Entry 35

Ian had his chemo appointment yesterday. It was the first dose of the vincristine that he's had in a month (which is the chemo they give him through his port). He was apprehensive waiting for them to access the port, but once the needle was in, he actually wanted to help. The nurse would let Ian push the tubes onto the needle to help draw out the blood and then she would tell him when to pull it off. He then got to shake it and put the next one on. There are syringes filled with medicine or solutions to clean his tubes and he got to squirt those in as well. The only thing he couldn't do was give himself the vincristine. He loved helping that way.

He is more social now when we go. At first, he would stay in his room the whole time, but now, he prefers to go to the back toy room where most of the kids are. There are a ton of toys to play with, coloring books, playstations, etc. He played with the cars and then made me many gourmet things like plastic toast, plastic cupcakes, and plastic sushi.

We got the all clear that he is well enough to travel. We had planned to take a trip to Utah before Ian was sick and it looks like we can go. The nurses gave us this huge travel kit with all these medicines any ER personel would need in an emergency and a letter explaining his condition and treatment.

Ian started a second oral chemo and is back on the steroid, but thankfully, he only has to take the steroid for 5 days this month. He is still losing the weight from his last round of steroids; he gets a little thinner each day. If you were to see him now, you would probably have no idea he is sick. His color is great and he has tons of energy. His hair is growing back in but it's a little fuzzier than normal. We are going to keep it short because he will probably still lose it.

He seems to be feeling well from his appointment yesterday. He has been teasing me all day and been begging to play with friends. He is taking a long nap as I type this, but that is normal for him.

Thanks again for all of your love and support!

Entry 34

Ian has been so incredibly bored with his sisters being out of town so took him train ride. He asks to ride on a train all the time and we found out about a little place in MO where you can take a train ride for an hour. I have to say, I hate google maps. It has gotten me lost more times than I can even remember. Stick with mapquest. Anyway, that tangent over, we made it there at 7:04 when the train was supposed to leave at 7. By some miracle, we were able to purchase tickets and run onto the train before it took off at 7:05.

Ian was so excited when he sat down! You couldn't get the smile off his face! The train was this little old train from the 1920's that used to take passengers to and from work in New York. There is no air conditioner or heater, so the windows were open as the train creeped along. They tell you the history as they drive along and playing old train music. It goes really slow, I think I could have walked faster than that train in some places. There was even a point where they had to stop and let the train rest for a minute so it wouldn't overheat.

When the ride is done you can see some of the older cars parked along the track. They have an old car that must have been like the dining car. It has tile on the floor, tables, and a bar. We also went inside the caboose. It was interesting to see. It was like a really small apartment with a bathroom, desk, sink, and a bed.

It was so great to have some alone time with him in that way. He was so grateful and kept telling me "Thank you for taking me on the train."

Entry 33

Lauryn and Emma have been at their Nana's house all week. Surprisingly, I have had less time to write and fill you in because I spend a majority of my time entertaining Ian. He has been so bored without his sisters here! Neither of us have really known what to do with ourselves. He keeps telling me to "Go to the airport and pick them up." They'll probably come home and it will only take a few hours before he's saying "Send them back."

Ian's schedule was a little different this week because his Dr. was out of town last Thursday. He had chemo on Monday- which went well. He is getting more and more used to it. I definitely wouldn't say he is begging to go, but he isn't hysterical either. We had a follow visit yesterday for some blood work and a follow up with the neurologist. The neurologist is starting to wean him off the anti-seizure medicine. I haven't heard anything back yet on the blood work, but they are making sure his levels are ok with the blood thinners he is on. I'll keep you posted.

Entry 32

I have a cousin who is a fireman so we went to visit his firestation today. It was spontanious, so I didn't have my camera (which I am sad about) but the kids had fun. They got to climb inside a firetruck and an ambulance and see the fire station. It's kind of like a big house with a living room with a big tv and tons of seating, a kitchen, and a room with about 25 beds. At the end of the tour, they had a call and the ambulance and fire truck had to take off sirens wailing-which of course, was the coolest part. Ian was pretty upset that he didn't get to ride in one though. I guess he forgot all about his ambulance ride a month ago. Hopefully, that's one experience he'll have to feel deprived over because I don't want to have to do it again.

Ian is doing well. He gets more energetic every day and is looking more like himself as he thins out.

Entry 31

Ian's Aunt Brooke is here in town right now. He has been getting spoiled with tons of attention, massages, and pampering. We went to the Deanna Rose Farm again (it is one of our safe spots- it's outdoors and he loves it). Ian went on a pony ride while the girls fed the baby goats (I don't think he liked them jumping up on him last time) and then they went gem mining. It's really cute- they give you a big bag of sand and gravel and then you have this tray you dump the sand bag in and stick it in the water until you start seeing your gems.

It was hilarious because Ian was trying to teach Brooke how to play Lego Star Wars. She didn't know how to do it and apparently was slowing him down. He said, "Log out Brooke" which she didn't know how to do. Without missing a beat or taking his eyes off the tv screen, he reaches over to her controller, fiddles around with a few buttons, and removes her from the game. Evidently, he has no patience for anyone who slows up his progress in star wars.

We are still trying to get Ian's new chemo medicine figured out. He has been taking an oral one in lieu of getting it through his port. The oral chemo makes him alot more nautious. Unfortunately, we've had a few instances at friends houses and at restaurants. We've been given some anti-nausea medicine to counter it so hopefully, it will work for him.

Entry 28

Howdy Ho!

This is Mike talkin' now. It's been over a month since I personally posted to Ian's blog. Before I update you on Ian's status I want to post some cool pics about a super huge tornado watch/thunderstorm that is moving right overhead right now. check out these pics from just west of us.













The news choppers have been flying over head to track this beast. Kansas life is great!

Entry 28

Ian has been WILD!!! He is teasing and irritating his sisters so you know he is feeling well. It's funny, because the past few times I have taken Ian somewhere, without him even doing anything someone has said, "Oh, he is a rascal isn't he?" He has that little twinkle in his eyes that tells you his mind is up to something. I guess it has been a while since we've seen it but I am glad it's back!

Ian went to a birthday party the other day. It was one of the first ones he's been to in a long time (if ever, I really can't remember him going to one before). He was so excited to go and was talking about it all morning. When we got there he was so shy even around all of his friends that he is normally comfortable around. He must have kept his head buried in my shoulder for at least the first 20 minutes. Finally, I got him to look out by having him take pictures but he still wouldn't look at anyone directly. It wasn't until the end of the party when it was pinata time that he opened up.

It's funny, in some ways he seems like he has regressed a little- he's more shy, more cautious, and talks like a baby alot- but in other ways he seems so much older. It's almost like it's just this look in his eye of an understanding of what is going on that is more than you would expect a 3 year old to comprehend. I don't exactly know how to explain it. He is definitely more compassionate- Lauryn got the tiniest little scrape on her leg and he was so concerned about her and demanded that I give her a band-aid so she could feel better. The next thing I know, he had walked up to her and given her a hug and a kiss to comfort her.