Yummy!

Don't forget your mashed potatoes!

Parent Showers

For those of you who don’t know: the Parent Showers are where you go to shower here at the hospital when you’re kid is inpatient. It’s a lovely, spa-like experience with aromatherapy candles, hot mineral showers, fluffy white robes and complimentary shower shoes that fit just right!

No, really… it’s one-of-two over utilized and under cleaned shower/toilet/sink-in-a-rooms. Some parents are good about cleaning up their mess of water on the counter when they leave, and some aren’t. But that’s not even the basis for my rant.

This week I’ve had the pleasure of running into the same woman three times over there in the spa. Apparently She has a child here at the hospital. Apparently the rest of us are just here for the pedicures.

Day 1, 6:30am: I’m waiting patiently for one of the showers to open for about 10 minutes. I’m talking with Andy on the phone about scans, pain, Max in general. She arrives. The shower opens, I go in and shut the door. I’m still on the phone while I clean up the counter so I can set my stuff down, get my soap and toothpaste out (not provided by the spa concierge), PEE (I would like to note that I actually went pee while on the phone with my husband. Eww.), ya know – the stuff you do before getting in the shower. What’s it take? 2-3 minutes at the most. She starts knocking on the door! “Hey! Are you gonna shower or just talk on the phone?” She says in a really pleasant voice. “I am peeing!” I reply warmly, “Wait your turn. I just got in here!”

I immediately begin practicing my relaxation techniques that I learned as I waited patiently for my turn in the (freekin’) shower: breathe in breathe out. Everyone here has child in the hospital and we’re a little stressed about leaving them in their rooms alone. She is the same.

So (yes, I’m still on day one), I take my 3 minute luxury shower with the most fantastic water pressure and shower head you would ever hope to have available. I get out, start drying off and She starts knocking on the damn door again. You’ve got to be kidding. Where is that concierge? Can’t she help She? I think She had a facial appointment and didn’t want to late. Who could blame her? The facials are awesome here. I finally float out the door (I’m practically high from the indulgence I’ve just experienced) and She brushes past me with a grunt. I hope her shower was as great as mine. I deliberated on whether I should hang out and knock on the door every 60 seconds…

Day 2: read paragraph three from above and you’ll get the idea. I swear She knocked every minute until I came out. She must love those showers.

Day 3: was this morning. She wasn’t out there when I went in or came out, but paragraph 3 started to happened again with the knocking and huffing and puffing and throat clearing. I think She heard the familiar sounds of me shuffling and zipping my bath bag and made a run for it.

Can I get a flavored sparkling water to take back to my room? I feel so great.

A friends' advice on how to cope with "friends"

Received this note from Will Lacey's dad, Pat, as I'm still struggling with my prior posted dilemma. It's even more bothersome this weekend with what we've posted about Max's cancer returning all over his body. I know it's also hard for people to voice a response to such devastating news. We don't really know what ot say either. But just knowing that Max is in your thoughts is huge.

A mom of an NB boy I met who died was going to grief counseling. She sold her house and move to a new town after he died because she felt so let down by her friends. She learned a piece of advice that she shared with me that she found useful for 'our' situation.

Don't expect all of your friends and family to be great at this. Some people will blow you away while others will disappoint. Instead of getting angry... take a look at each of your friends and identify what each one is best at. Then use that person for that purpose and know they only have one talent.

For example: You may have one friend that is always good for a laugh a bottle of wine but has no sympathy, no empathy, no kids, and no idea. When you need to blow off some steam... call her up. Perhaps each of your friends has one talent that if you identify you can patch together one uber-friend that addresses all of your needs. Don't hold it against them...it is not something that everyone is good at and if you expect it you'll be disappointed.

I thought it was interesting advice... I've tried it... but I still get angry sometimes.

Mi Familia...

I just have to clear the air here with my poor family. They're all freaked out about my previous post and feel like they could do better and aren't dong enough, yadda, yadda, yadda.

You guys are crazy. If there is one thing - one sure thing - that Andy & I can count on: it is our family. We know for a fact that if and when we need you - any of you - for anything, you will make it happen. This is the biggest and most important thing we could ever have available to us. We know too many people who simply don't have this luxury and it means the world to us and we appreciate it more than anything else you could possibly do (as far as I can think right now - but it is past my bedtime... wink).

Max's cancer is the center of our universe right now - but keep in mind that we treat it like an everyday event. Kind of like some mom's drive their kids to soccor during the week? Well, I drive Max to Children's Hospital. It's our routine, it's not strange to us, it's simply what we've been dealt. So don't feel awkward talking about Max, asking about Max, or doing neither; maybe you want to know what Hannah & Nicky ate for dinner. Just keep in mind that it is easy for us to talk about, just like it's easy for Jen & Matt to talk about their kids' sports. We're not going to cry or make you cry (hopefully). Sometimes it's easier to get a quick update on scans by asking than by trying to read our convoluted scan-result-blog-entry.

I thank you all for caring so much that you freaked out. You're doing great by us. We love you all.

Out of sight - Out of mind

I'm having some conflicting feelings.

On one hand we are surrounded by incredibly generous people - some of whom we don't even know and may never meet - who have seen our hope in the MagicWater Project (and the Sam & Penelope Fund before that) and have made a donation in an effort to help us give Max and kids like him time to be a kid. They leave notes on our blogs, they're interested and openly caring - and so many of them have made donations to MWP that it would boggle your mind. Even their kids bring change to school for the Magic Coins bottle in their classrooms. They offer help, caring thoughts and concern, prayers - and it comes from the heart. It makes me cry.

On the other hand, we've got very close friends who have never seem to ask what keeps us going. And I love these friends, but I feel a bit disappointed and (today) mad a them because I feel they don't care that we have a child with a deadly disease - how would i know if they care? I never hear from them in any medium. In writing this I see that it can appear that $$ = caring... but that's not what I mean; that's not what I'm getting at.

How many times do we have to say that neuroblastoma has no cure? How many times do we have to say that even though Max is doing well today, things could change overnight? Sure we keep a positive attitude, but that doesn't keep the constant nagging in the back of our minds from reminding us that life really is precious.

We have a little boy who carries a deadly cancer in his little body that could erupt like a volcano. How frightened would you be every day if you had that thought in your head about your child?

I guess it's easy for the people in our immediate community to feel more affected by Max because they see him all the time and their kids may talk about him, or they've signed up for a blood drive in his honor. Out of sight - out of mind doesn't play a part here. Max and neuroblastoma are in the forefront.

Thank you so much to all of you who have played a positive part in Max's journey. And I'm sorry for striking out at those of you who I'm mad at tonight (whoever you are!) - I get to do that... it's my blog and an outlet is required to keep my mind from completely fogging over. good night.

watching the grass grow

where to start... we had a friend die this week - suddenly. doesn't matter why or what happened. it matters that it happened. here was a man, the dad of a friend of Max's, a father to three young kids and husband to a wonderful woman. he was taken suddenly from this life. in talking to many other mom's over the past few days i keep coming back to this series of posts on acor about NB statistics and all the parents worrying about the 40% survival with treatment A vs. 60% survival on treatment B... and an NB parent finally stopped all the comparisons by pointing out that life is 100%. you're alive or your not. it doesn't matter if you have cancer or you're perfectly healthy. living for today and being happy with what you have right now is essential. i'm not saying to live as if you're going to die tomorrow. but do live in such a way that you are happy. don't let the goofball driving too slow in front of you make you uptight (are you in that big a hurry anyway?). instead of getting mad at the guy who just flipped you off, feel sorry for him and wonder what you could do to make them smile. the kids have been watching VeggieTales again and this weeks lesson was love thy enemy. i'm not a bible reader (not that there's anything wrong with you if you are!) but i got the 5 year olds lesson of what it means to be nice to people and how it can effect you to be mean back. revenge and anger only linger within you making each moment less pleasant. smile. be peaceful. you can infect people easily with happiness. pass it along. my sadness for this family is deep. life can end at anytime for any of us. make the most of it. andy & i promised that we would make the most of our time with our families when max was diagnosed three years ago and this is a reminder to us all. life is sweet. there is so much around to see and enjoy... like watching the grass grow.

My whole family is sick!

Yikes! Everyone in this house is sick! Max had a fever yesterday and is throwing up today. Nicky is running a fever, coughing and just plain miserable unless you can somehow get Motrin into him without him spitting it right back at you. My husband has had a miserable cough for over a week now and sounds like a heavy smoker having a hack-attack. And now my healthy girl, Hannah, is upstairs coughing her head off and the Vicks rub is not doing its job!

Calgon, take me away!