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

Yeah...Lisa is back home!

Lisa returned home today....yeah. She's looking better and up and about. Still on some meds to help her with the sores, but at least she's eating and drinking.

She will be going to Motts on Friday (hopefully as outpatient) to have GFR test (this will measure her level of kidney function and assure they are still working properly so she can continue with chemo treatments.)

Chemo #5 is scheduled to begin on Monday. I personally am dreading it. These were the drugs that hit her hard last time. With the week we had this week, I'm a little worried she's not as strong as she was the last time and that is going to make it even tougher. We have a few days to get her eating and "fatten" her up. Based on the last times she got these drugs we anticipate her not being able to eat/keep food down for almost 1 1/2 weeks.

Not sure about Mike, but I'll welcome visits from anyone during chemo week and the week after...especially if you don't mind helping hold a bucket. This is not my strong suit and I'm already filled with anxiety over the thought of watching her go thru this again.

Arghhhghghghghghghghghghghhghgghghhghghgh!

Stanley Comes to Visit

Mike writing---Still here at UofM and it's Monday afternoon. Lisa seems to be feeling better and is just starting to eat small bites. She looks good and is walking about and playing but the 13 hours of sleep might have had something to do with it. So we're watching Beauty and the Beast for the the 53rd time after Uncle Gerald and Aunt Del's visit (thanks for the yummy sandwich) and who walks in on the floor? As you can see from the picture Stanley stopped in accompanied by Chris Draper. Lisa didn't under stand what all the who-ha was about but she likes looking at the picture.

We're at Motts

So...we're checked in. Lisa's still feeling awful and hasn't been very agreeable. According to the nurses these "mouth sores" are actually sores that probably run from her mouth all thru her throat and right out her bottom. Which would explain her irritation with her nether regions.

They've got her on hydration and antibiotics...standard protocol for fever and we're still trying the mouth rinse. If it doesn't relieve her pain, then we step it up to codeine. At least she is sleeping now. Hopefully tomorrow will be a better day.

Blasted Side Effects--one week later!

Ok...so chemo has been over for a week and we're thinking we are free and clear because Lisa has been running around like a nut on caffeine. Thursday she started slowing down a bit. Friday she went for a transfusion with Mike. When I finally saw her Friday night she didn't look quite right. Her temp was edging up, down and all around getting very near to the feared 100.5 a few times. Mike and I were dreading having to make a trip to Motts. After a while I asked the kids if her tongue looked swollen....everyone looked at me like my head was swollen. Nobody but me seemed to think her tongue looked odd.

2:00 in the morning she wakes up crying...she has a huge sore on her lip and shes crying her mouth hurts. Crap...mouth sores...a side effect of chemo...one we've not dealt with before and have no idea what to do especially in the middle of the night. After consulting Mike, I find out that Lisa hasn't really drank or ate much all day...uhoh....mouth sores, fluctuating temp, and possible dehydration. We weigh the odds...call Motts or live in denial and know the risks for Lisa. We choose to live in a very "alert" form of denial. I spend most of the night taking her temp and giving her ice to suck on. Finally, it occurs to Mike and I that if we give her Benadryl it might ease some of the pain and help her sleep. God bless Benadryl. It gives me 3 hrs of sleep.

At about 8 this morning Mike and I reassess. Given we are still toying with the same circumstances we call Motts. Doctor on call prescribes a "magic mouth" medicine that Lisa is to rinse with and it will numb her mouth and alleviate the pain and also prescribes some tylenol/codeine. We're all very aware of her precarious position having not eaten or drank in 24 hours.

We get RX around noon. The numbing rinse works...trust me...I tried it. Problem is, how do you get a 4 year old who feels like hell, and won't even drink water to put some thick pink rinse in her mouth. Apparently you can't. We get a little in. She continues to walk around looking awful and her temp is dangerously close to the 100.5 three testings in a row. Finally, we reside ourselves to the fact that we're going to have to take her to Motts. We call the doctor again. He suggests trying the Tylenol/Codeine. This is a last resort, because while it will help her feel better it can also mask a temperature which could be a sign of infection which needs to be fought immediately given she has no immune system right now. We give it to her with explicit orders from the doc to keep a close eye on temp (now it can't hit 100.4) and to call him at 8:00 to reasess her condition. If she hasn't eaten or drank anything by then, she'll be going in.

It's 6:52 as I write. She's standing by me crying and breaking crackers. She keeps asking for food, but nothing taste good to her. She has had a few popsicles and some water, so that's a start. Ok...family walks in from Scott's next door....Chrissy volunteers to take Lisa's temp. 100.7..crap...gotta go. Off to Motts.

I hate singing my ABCs

"ABCDEFG, I hate singing my ABCs"....ahh ....the spirit of a 4 yr old. When I asked Lisa to wash her hands the other day and reminded her to sing her ABCs so she would wash long enough, that is the little ditty I heard coming from the bathroom.

Lisa has been doing great. Her spirits have been high and her energy higher...I swear whatever is in the chemo drug Cyclophosphamide....I want some. She runs circles around all of us.

Her blood counts came back today and her hemoglobin is low so she will go to Motts in the morning to get a transfusion.

Rest of kids are doing great and adjusting to school.

Maranda turned 11 today...Happy Birthday Maranda!

Yeah--Round 4 done!

Mike and Lisa came home to the lake house around 11:00 last night. So far so good. Lisa's just had a little "morning sickness" on Friday and today. She wakes up, does her thing, takes her anti-nausea med and then proceeds to run circles around us.

She's looking good after this chemo. We need to get her rested and eating before chemo 5 that's the nasty drugs. Hopefully her counts will stay good and she'll have no temperature for the next 2 weeks so we can just hang out at home.

Big thanks to Lisa G who came out Friday and kept Lisa and I company. It certainly made the time go by a lot faster.

Huge thank you goes out to all of you still helping with meals....it really is a great help knowing we don't have to think about what to make for dinner, especially when Mike and I are just crossing paths at the hospital as we "switch shifts".

A special thank you to Chrissy's Girl Scout Troop who has been doing our weekly shopping for us. The kids are so happy that they have milk and cereal and fixings for lunch...especially now that school has started!

omg!

Good Grief... No sooner did I hit publish on the last post...Lisa looked at me big-eyed, mouth puckered and asked for the bucket...yuck!!

8 more hours until Mike relieves me and I'm counting every minute!

*

Almost done with round 4

Last day of chemo for round 4....yeah!! So far so good....Lisa's doing good and running us ragged. She's very happy with all the princess gowns she got at her birthday last week and has worn one every day that she has been here. I was hoping to share pictures with everyone, unfortunately my computer crashed and I lost all my pictures and files since April....BOOHOOOOOOOO!!

Lisa's been pretty energetic even though her appetite is down. No getting sick yet---yeah!! If she continues to do well today, she should be able to get out of here at 10:30 pm and we will head to the lake for the weekend.

Hope everyone had a great week and is getting back into the school routine!

So far so good

Lisa was admitted yesterday for fourth round of chemo. Hydration took most of the day. Chemo drugs began about 10:30 pm last night. So far so good...she seems to be feeling okay. A bit tired, but who isn't. If all continues to go well, her meds will be done 10:30 pm Friday which means we should be back home late Friday or early Saturday.

It's Mike's birthday today....let's hope it's a good one and that he doesn't spend it holding someone's head over a bucket!

Chemo Round 4 Begins Today

If all goes well and blood counts are good, Lisa will start her 4th treatment today. Another round of new drugs so not sure what the side effects will be. This cocktail of drugs is given over 3 days, but one of them she gets for 24 hours each day (at least that's how I interpret the paperwork).

She has been doing great, but I'm a little anxious....the thought of giving her drugs with such strong side effects is a bit disturbing. I know we are trying to fight a bigger evil, but it's so hard to watch. I'll just have to stay vigilant with my mantra "day by day".

The kids are excited about school but wish they had a few more weeks of vacation....I totally agree with that one.

Hope everyone had an awesome weekend.

Birthday Photo

Photo taken by Mark Underwood.