Hello everyone, Mike here with a quick update. We had a really good weekend interrupted only by a couple mid-night incidents of "hydration induced bed soaking" and vomiting. For a number of days post chemo we hook Lisa up to an IV to keep her hydrated at night. That means we (and when I say we I mean "I") have to get up every 2 - 3 hours to change Lisa's pull-up. After 3 hours I'm guaranteed to be changing sheets. Lisa handles the upset stomach and sickness very well. She takes care of business and goes right back to whatever it was she was doing. Often times eating a short time later. Yes, she's eating again. Not back to her pre-cancer grazing but she's getting plenty to sustain herself. As you can tell from the pictures she's thinned a bit and seems to be getting taller too.

Lisa's home & Jamie Lee Curtis was awesome

Lisa had a great night last night (except for the constant beeping of her machines from 12:30-2:30 due to technical problems...grrr) and her morning was a good one. Matt met us at the hospital at 10:00 this morning and we were able to get Lisa discharged. Matt took Lisa to do some Halloween shopping. She did pretty good, but after walking around for a while, she threw up a little bit and than immediately asked for chicken nuggets. Matt, doing what any of us would do, put her in the car, got her chicken nuggets and fries and brought her home to watch a movie. She ate her fries and 2 chicken nuggets...not the healthiest of meals, but it's more than what she's eaten in the last 2 days!

In the mean time, I was being entertained by Jamie Lee Curtis. She was very energetic and animated and shared some wonderful tidbits about her past and how she became an author. When she signed my book, she graciously accepted a Lisa bracelet and asked Lisa's age, diagnosis and if she was in a children's hospital. In my short minute with Jamie, I assured her Lisa was getting excellent care and that we'd tried to arrange for Jamie to make a stop at the hospital, but her schedule was too tight. Jamie and I took a picture together and she gave me a squeeze and told me to take care of my little girl. I think she may have even said she liked my hair---or maybe I was just putting words into her mouth seeing how we both sport similar styles now!!Who knows, maybe Jamie will find the time to check out the blog... Jamie...if you do read this, be sure to sign the guest book and add us to your prayers!

So all in all a good day so far including having beautiful weather here in MI. Everyone enjoy...Lisa and I are gonna take a nap!

So far so good

Hope I don't jinx us. It's 11:19 and so far all is quiet...very quiet. Lisa fell asleep at 9:00 and continues to sleep and is looking pretty peaceful. I'm keeping my fingers and toes crossed that she doesn't get sick tonight. She really hasn't been eating in the past 2 days so we know her appetite has been effected, not sure how that will impact her stomach.

Want to give a huge virtual hug to our good friend Lisa G. who came out for a few hours yesterday to keep Lisa and I company. Both Lisas adore each other and the visits always lift all of our spirits and make the time go by more quickly.

I also want to send a big thank to the teachers at Hulsing school who sent us dinner Wed night. It was fantastic and plentiful. We've got some frozen for a future night when we're hungry but don't want to cook.

Thanks also to everyone who volunteered to come watch Lisa Friday while I sneak out to rub elbows with fame and eat lunch in the same room with Jamie Lee Curtis. Matt, Lisa's Godfather, plans on coming up here and watching her so we're all set.

As I walk these halls, I continually realize how lucky we are. There are so many children here, so many stories, so many things that could go wrong...we're just so blessed...so far things have been manageable. We couldn't do it without all of you, your support, love and prayers...thank you, thank you, thank you and keep praying!

Say Cheese

Here's a picture of Lisa enjoying a few "chip-ies" last weekend. She loves Doritos and Cheetos and has the orange cheeks and fingers to proove it.

Chemo 5

Well it has begun. We checked into the hospital late Monday afternoon. Typical protocol for this chemo round is hydration all day and the chemo drugs at night.

This round of drugs is the one that had Lisa throwing up for two weeks; so we're keeping our fingers crossed and the docs have prescribed additional drugs for nausea that will hopefully help.

Tonight for some reason she was extremely unhappy and uncomfortable. Around 8:00 she threw a colossal temper tantrum that included screaming, crying, kicking and throwing things. After 1/2 hour of that, I had her nurse come in and we decided to give her some Benadryl. She calmed down for about 20 minutes and then fell asleep. She woke from the sleep kicking and fighting at about 9:15. The nurse came in again and brought the doctor. They thought Lisa might be having a reaction to Benadryl, but we ruled it out because she's had it before and she was acting up before getting the Benadryl. We discussed any other possible drug reactions as she continued to scream, kick and holler. She finally ran out of steam and fell asleep around 9:45 and so far there have just been a few whimpers. Hopefully, she'll sleep peacefully through the night.

People have been asking about visiting....the more the merrier we say! As long as you are healthy, visits are welcome and you can pretty much come any time of day. Again, a warning to those of you with a weak stomach, these drugs can hit Lisa pretty hard so she might be moody and doing the bucket thing.

If anyone is available Friday from 11-2 to stay at the hospital with Lisa, let me know. I have an opportunity to attend a lunch where Jamie Lee Curtis is speaking and giving out signed copies of her latest book. I really want to go, but feel a bit guility leaving Lisa here alone with just nursing staff. This is the time the side effects of the drugs really start showing, but if that doesn't bother you and you have the time on Friday, I would really appreciate the help.

Thanks!

Honoring Maranda

So…..this has taken me forever to write about. I’ve been operating with blinders on this week because I don’t want to think about it.

On Monday, while Lisa was recovering in the hospital with Mike, I took Maranda for her appointment with the orthopedic doctor to determine what to do about her scoliosis. She is going to need a brace.

I know it’s not as bad as cancer, I know it could be worse, much worse…but let’s give Maranda her moment…it may not be cancer, but it still sucks and it is not something anyone would wish for… it’s not going to go away. If we’re lucky, we can stop the growth of the curve. It will be another adjustment in our lives…a big, uncomfortable one at that.

I’m not looking for sympathy, I’m not looking for reminders that it will be okay, I don’t need verification of how strong we are….I just want you to walk for 5 minutes in Maranda’s shoes and really feel, really get what this might be like….it may not be cancer, it’s not going to kill her…but…..

Let’s begin….take a deep breath…clear your mind. Remember back to what it was like to be 11. You’re no longer in grade school. You’re a sixth grader in a new school with older kids. You went from being the “big kids on campus” to the “babies” again. You don’t sit in the same classroom you change rooms every hour and you need to be moving at a pretty quick pace to get to your classes in the five minutes allotted.

Think about your locker….changing classes…hallway talk…lunch in the cafeteria…gym class (and no time for shower after!) Remember what if felt like as you were starting puberty…your hormones are kicking on and your body is changing…opposite sex is very cute and hard to talk to....are you there? Are you 11 again? Do you remember how you felt…confident? Awkward? Shy? Unsure? Nervous?

Now add to your 11 year old self….your parents, who are starting to seem irrational to you…..your siblings and the pain-in-the-butt they could be…

Now…add to that you’ve been diagnosed with scoliosis and you have to wear a brace.

Picture yourself going and have a “cast” of your body done. How scary, how uncomfortable. Once the cast is done, you’ll wait for 4-6 weeks to actually see this brace you have to wear until you stop growing (approx 8 years!!!) your whole teenage life. They will show you how to get it on and off…it’s going to be tricky at first….and not just that…people are going to be looking at your body… remember you’re an 11 year old who is just starting to develop and you don’t like anyone to see you naked.

You get the brace home…you have to wear it…23 hours a day…basically the whole day.

Put this brace on your 11 year old body. It’s uncomfortable, isn’t it? Did you remember to put a t-shirt on first? The brace is going to rub, especially in the beginning…you’re going to get sores…the t-shirt can help so that you don’t get as many. Now make sure you find some clothes to dress in that will hide the brace. Hey, at least it’s easier than the olden days….it doesn’t come all the way up to your neck…so you should be able to cover it up. Ok…now let’s put the clothes on….oops…that’s a little tough…you can’t bend your back. How the heck will you get your shoes on? Of course, you’ll figure it out. Let’s think about some other things you’ll need to do…how about sitting? Think about it, you can’t bend your back…guess going to the bathroom will be a bit of a trick as well. Walking should be okay, riding a bike or roller blading, that will be tough (remember you only get one hour out of your brace a day…so does that mean you carry your brace on your bike so you can put it on when you get to your friends?) How about having to change for gym class in a locker room full of other girls? How about the first dance or first kiss (not that your parents allow you to do this until your 25 anyway!) but let’s just say you break the rules and give it a try…how the hell awkward is that?! Even giving your Mom a hug will be different. And picking up baby sister or something you drop is going to be a trick…you can’t bend your back!

So how do you feel? It’s wonderful to be a pre-teen again, isn’t it, especially one who has scoliosis? I’m not trying be all whiny or down about it, but really…this sucks. It’s hard to imagine going thru your teen years in a brace…I know we’ll manage, I’m sure Maranda won’t miss out on things…we’ll figure it out…but it just bums me out.

So far, Maranda has taken the news of getting a brace in stride. When the doctor told us, Maranda just flashed me a look but didn’t change her position (she was lounging on the exam table) or her composure at all. While I’m certain she doesn’t realize all the implications of wearing a brace, she will know soon enough—first hand. I’m sure we will all survive this---what else can we do.

Maranda’s personality and disposition will be a definite asset. She is a wonderful person, one who has been described as compassionate and an “old soul”. She has always seemed wiser than her years. So, this post is in her honor …in a sense she is my hero, my role model….she truly does make lemonade out of lemons. My prediction is that within one year of her wearing the brace, other children will be wishing they had a brace and could be just like Maranda…she just has that effect on people.

And while I should end on that note…there is one more thing I have to share. The doctor who confirmed the need for the brace is the same one who diagnosed Lisa’s cancer. While that in itself is not alarming these words are “I would like to send Maranda for a MRI, I’m sure it’s nothing to be worried about”. Those words are exactly the same thing she said about Lisa. And while, I’m sure there is nothing to worry about (surely lightening wouldn’t strike twice) Maranda will go for an MRI to investigate something the doctor felt in her stomach… perhaps nothing, perhaps a cyst, minor surgery at the most is the doctors prediction.

Easy Schmeazy

Lisa is getting the GFR today...and by the grace of God, it's actually a pretty easy test and things are going well.

They were able to use her tubes for this test..they injected dye, she laid still for 8 min...we traveled over to infusion in the cancer center....and now she's running around like a nut and playing....she gets blood draw at 9:37 and 11:37 and then we should be out of here...of course we have to get chicken mcnuggets on our way to the lake...which is where i think we'll head after