Monday, August 18, 2008


It feels like it should be Friday, not Monday. I really worked hard to get Kevin out of the hospital today, and did! There was talk of him staying a couple more days but he really is doing well. Yes, we are all worried about the lesions on his spline. He is going in for an ultrasound tomorrow and we have to keep an eye on his CBG levels (hopefully I have it right, it is suppose to be the level that shows that the body is trying to fight an infection, typically after breaking a bone or after surgery or a stroke or heart attack).

So Eric is right, Kevin is really weak and this is getting really scary, but I know that without this the likelyhood of kevin's cancer coming back within the next 5 years is greater.

Some good things have happened in the last 24 hours. We got to met Kathy and her son Steven Sunday night! They stopped into Kevin's room after checking it at the hospital for Steven's 5 year post treatment follow up visit. It was so good to finally meet mine and Kevin's angel! She is the one who found us (online via this blog) when Kevin was first disagnosised back in Detroit. Mike had posted Kevin's diagnosis here and it showed up on one of her google alerts (thank heaven!). She contacted us and held my hand (so to speak) through the whole choosing a treatment and helping us get Kevin into St. Jude for treatment once I figured out this was really the best place for him (and it is!) She was there for late night phone calls when I didn't understand something the doctors had done or told us earlier while at the hospital. She is was a sympathic and understand ear who had walked down this road before me and was kind enough to walk a complete stranger down this scarey road to help them. Kathy is an amazing woman and mother. I really appreciate her friendship and understanding she so willingly gives. I can't say enough how much I really admire her and how grateful I am to her. She may have saved Kevin's life by helping us get Kevin into a more sucessful protocol (treatment for his cancer).

Another good thing is my close friends Carole and Lynn are here. Lynn brought Kevin and Scotty's friends (Kellen and Gavin, her son's) with them. Kevin was so happy to get out of the hospital and play with Kellen like old times. They played and when Kevin started to get tired, Kellen sat right next to Kevin while they watched Star Wars the Clone Wars. Kellen helped me while I hooked up Kevin's medicine. Such a brave thing to see your friend go through and stay right next to him! When we first met up with them Kevin was afraid Kellen wouldn't want to play with him anymore because he was ,"the sick kid" (his own words, expressing his concern). I reassured him that wasn't true and sure enough, they were stuck together within minutes and it was nice to see Kevin acting like a kid and with someone he has known for a long time, someone who is comforting to him other than all of the adults he is always surrounded by.

Kevin is pretty emotional right now. There is alot going on as we prepare to finish treatment and return home in October (we hope! If everything goes well this last round). I feel WAYYY behind on everything, thank yous, birthday cards, emails, phone calls, etc. Last month I had such a good grip on things and this month I feel like I have just lost it and I can't catch up.

Scotty is enjoying have Gavin here. We don't have them spending the night in the same place, we all discussed this and decided that it was better to seperate them so we can get some decent sleep. And I am enjoying having my friends here too. It was nice to sit down to dinner with them while the kids watched their movie and just talk like old times, when Michigan, not Memphis, TN was mine and the boys home.

Jake update.
Jake is SO BUSY! I caught him climbing the walls in his play pen we have msde at Target House. He had almost climbed over!!! He so wanted to go play with the older kids. Jake is still a big flirt and tilts his head when people come up and give him lots of attention. He also has this new HUGE smile that he suck all of the air in from his lungs and makes this really excited sound. He is working on learning how to use a spoon. He eats more than any of the other two boys combined and he doens't eat any dairy or nut or chocolate products! We are pretty sure he said 'guys' today when calling after the older kids today. So that brings his words to 'this', 'that', 'da' (dad), 'guys' and there is some debate about him trying to say Scotty. I haven't personally heard it yet though (so does it count?). One more month and Jake turns one!

I should get to sleep. I have to be up at 4 am to do Kevin's meds.



Lani said...

Rachel - Are you ready for me to come and help? I'm excited to be there and excited to help you the best I can!! I will arrive at 5:18pm on 9/16 and home on 9/21. Will call... Enjoy so much the updates.


Diane Hanewich (Erik's mom) said...

hi rachel!
just wanted to let you know that scotty and erik and christian will all be in the same kindergarten class! erik is really excited. hope you are holding up ok and kevin continues to fight hard. we think of all of you often. take care!