Max's friends and family
I'm not sure who keeps up with Max from here and who keeps up with Max from the Caringbridge site. If you're keeping tabs from this site, I'm sending you over to the caringbridge site where I blog on Max's journey.
Thanks so much for your support and prayers. We are so grateful to you.
Heather, Kelly, Alex, Austin, Supermax and Jameson Duke McMichael
Update is here:http://www.caringbridge.org/visit/supermax/journal
Max's friends and family
Honestly, I didn't think I'd be writing another update.
I thought we'd fade off into the sunset and people would wonder what happened to Max as he jumped and played in his cancer-free new chapter.
Last Tuesday was supposed to be our "exit exam". We'd spent a very long day the week before getting images of his mid-section as a baseline for the next 5 years of watching for lumps and dots to show up. So far all the images had come up clear. I'd planned a big family celebration at the downtown aquarium for all 6 of us to end this chapter.
So when the doctor said, "Well... everything was mostly
good..." I knew what was coming. She said they'd found a 2 mm nodule in his lung. She said she wasn't worried about it. We'd continue with the plans to remove his port next week and we're not moving up his next CT scan 3 months from now. If she was worried, she'd keep the port in and we'd do the CT scan in 6 weeks. Well... I feel better. Thanks!
Actually, I just burst into tears. She was supposed to give us 100% clear news and slap us on the butt on our way out saying, "Get out of here you crazy kids!" She was raining on my parade. And now we had to wait 3 more months to see if this nodule grew. If it does grow... we start all over.
We. Start. All. Over.
To make things just a little worse, we got some really good news in a really bad way. A social worker was also in the room. She tells us (after the doctor leaves us) that "Max qualifies for Make-a-wish!" I know you're thinking, "What in the world is so bad about that?!" I can't really explain it. It just really made me more sad that my son "qualified" for Make-a-wish. It means he's really sick. It means he paid for it with months of tears and shots and barfs and being more brave than any of us. "You can go anywhere, do anything!", she says, "except ask for a house or a car." We could go to Italy. We could go to the Olympics. The whole family. It's like winning a grand prize! Until you realize how much Max had to pay. He literally gave up a kidney for this. Does it make sense that this amazing gift makes me so sad? I guess it would have been better if they said, "Make-a-wish would like to help him out" or something like that. To say he "qualified" just really put a sting on it.
Needless to say, we're pretty sure Max is Disney-bound. Apparently Make-a-wish kids don't have to wait in line. We'll get a lot of ugly looks from weary line-waiters. Should be fun! ;-)
So two things:
1) Please remember when you see kids cut in front of you at Disney that they may have paid a heavy price to piss you off.
and 2) For all the people who have supported and prayed for Max, we've made a T-shirt. They're $20. We get a small portion, so it's not as good of a fundraiser as THIS site. Mostly, we just wanted to see how many people we could get to walk around with "Beat Cancer Baby" on their back.
So if you would be so kind, please show your support with a donation on this site or by getting a t-shirt here:http://www.booster.com/supermax
hanks for your continued support and prayers. We are so grateful to you.
Kelly, Heather, SuperMax, Alex, Austin, and Jameson Duke.
Max's friends and family
This last week, I've been wading through all the literature for support groups that the hospital provides. One gorup helps with the $12+ a day for parking. One group runs a camp for cancer kids and their families in the summer so they can get away from it for a week. One group meets once a week to just meet with other parents and vent. There's a group that goes room to room on the cancer floor asking parents if they need any groceries because you'd be amazed how often a parent is caught unprepared when their child is admitted and didn't bring any toiletries or extra clothes. I was one of those people. I was there for three days straight, in the same clothes, afraid to even leave for a cup of coffee and have Max wake up alone. When a lady with a grocery cart walked by and offered a toothbrush and toothpaste and a brush, I was enormously grateful. There are times when you just can't be prepared. If one of those times is when your child is raced to the hospital, it's probably the worst week of your life.
Cancer is expensive. It stabs your bank account from a thousand directions. Parking, gas, oncologist, surgeon, anesthesiologist (Max's guardian angel - priceless), and don't forget the room is over $2000 a day. Do you know what kind of palatial accommodations you can get in Vegas for $2000 a night? I wouldn't be fantasizing about toothpaste, I can tell you that! For $2000 a night, Dr. Oz should be stopping by each day with some awesome greek reed-grass toothbrush that prevents aging.
We need your help. We're a one-income family now and Kelly is killing himself scrambling to compensate.
But more than that, if you don't contribute today or any other day to Max's fund, please look into the amazing programs for cancer families. Ronald McDonald house needs things like tuna and tuna kits, cup o' soups, snack packs, pop tarts, post-it notes, postage stamps, hand soap dispensers, toiletries, paper towels, ziplock bags, can openers... easy things to pick up and drop off at the hospital that would mean the world to a stressed out parent. You can go to the Houston website at rmhhouston.org, or if you're outside of Houston, just google Ronald McDonald House.
Candelighters offer programs where you can adopt a family during the holidays. We're not just talking about families who are broke. When you get blindsided with cancer, you don't have time to do normal things. How do you leave your child at the hospital to go to Toys R Us for Christmas presents? You can help. You can adopt a family and help give them a holiday. We almost missed Easter completely this year because we were just too exhausted to decorate eggs and assemble baskets and buy Easter clothes. If it wasn't for Kelly's family, Max wouldn't have hunted for a single egg. Can you imagine if a family was too exhausted for Christmas? You can look them up at www.candle.org
I could give you a long list of awesome groups like this, and if you want to know more, email me at firstname.lastname@example.org and I'll connect you to some amazing people.
Or you could just take a day and go to the surgery waiting room and pray with the single mother who has no friends or family and just handed her baby over to a surgeon and is quietly sobbing alone.
Or you could visit the chemo floor or even the surgery floor and get to know some parents to see if they need a ride to Target - or better yet, can you get them anything?
You don't have to donate to Max - but we'd be grateful if you did! But please take one day this month or year to look at one of these great organizations and maybe drop off some soap. A toothbrush and toothpaste. You have no idea how much something so small can help soooooooo much.
Thanks again, our friends - old and new, familiar and anonymous - for your amazing support and prayers. We are so grateful to you!
With love and prayers,
Heather and Kelly (and Max!)
Max's friends and family
Yesterday night, Kelly came to the bedroom, eyes all wide and said, "Did you see it?" Apparently there was an anonymous donor who gave $10,000! Who has a spare $10,000 lying around? That's insane! Talk about a guardian angel!
I've been spending time each day writing thankyou emails to everyone who has donated (and leaves their email - a lot of people don't). I want them to know that they sent a donation to a real boy who is really battling cancer, who really lost a kidney. I wanted them to know their money isn't going to pedicures, manicures, spa days or shiny rims. Their money is going to Max's medical bills and the amazing staff at Texas Children's Hospital who save babies like Max all the time.
It's so hard to fundraise for yourself. You naturally have an aversion to asking for help. You know in the back of your mind that people outside of your immediate circle of friends will say, "That's a scam." I can't imagine what kind of horrible person would grift people out of their money by using a kid-with-cancer story, but I'm sure they're out there. I hope if they do, that Karma gets them good and proper. But when it comes to your child, you find a way to overcome your ego and accept help. You learn to advocate for your child. You learn to be the squeaky wheel and make noise and shout from the rooftops, "My baby has cancer! Please help!"
And then there are the people like you who take a leap of faith and say, "Maybe this kid is real. Maybe I can help." People like you who send $20, $100, $1000, and even that unbelievable angel who sent $10,000. Every bit helps. Every bit goes to Max and his battle. I hope when you do donate that you leave your email so we can thank you. I know a lot of people don't need or want thanks, but it's important to us. It's important to us that you know we are real and we are so grateful to you for supporting our baby.
Thankyou friends and family and friends of friends and family.
Max's friends and family
Almost through week 1 of chemo. So far, the only side effects were minimal nausea, headaches and a bit of lock jaw. We asked him where it hurt and he pinched his jaw on both sides and said, "Right here on my faces!"
The scar from where his kidney was removed is still sore. Understandable, I guess. It's a huge scar. I told everyone we should just tell people he got into a knife fight because he's so gangsta. My sister offered up "shark bite". My mom offered up "a magic trick gone wrong." That's the one that ultimately won.
I'm trying not to put the same info here and our http://www.caringbridge.org/visit/supermax site. I don't want to be redundant. But I'll share my favorite story with you here:
When I'm stressed or worried about my children being away from me, having a hard time at school or going on a short trip without me, I say this prayer: "Dear Lord, please send your very best guardian angels to protect and guard my babies.."
On the day of Max's kidney removal, we were very stressed and I'd said that prayer. We met a lot of doctors and nurses and helpers and talkers and truly they all just became an annoying hum as we got closer and closer to when they were going to take him away. They were going to take him away and take his kidney and the giant tumor that was eating his kidney.
Finally the anesthesiologist came to talk to us. He said the surgeon - who was the very best - called him personally because HE was the very best and they were worried about this one. Again, his words began to muffle as the worry and stress descended on us once more. But then he stopped and said, "So think of me as..." he shrugged, "...his guardian angel." Suddenly I was slammed into focus again. Tears came to my eyes.
Obviously this had been a very hard month. I had actually began to wonder what EXACTLY did I do to piss God off so much. But in that crystal clear moment, I got it. Prayers are heard. Have faith.
And so you who have come to this site to support Max are our guardian angels and we are so, SO grateful to you. And even if you don't have much or any donations to offer, please believe your prayers are just as important and appreciated. Prayers are heard.
Thanks so much!