Loading ...
CureSearch Walk
By Natalie | January 31, 2010 at 3:51 pm
As I said before, on Saturday, May 1, our family will be participating in The CureSearch Walk 2010 here in New Orleans. CureSearch supports the work of the Children’s Oncology Group (COG), the world’s largest cooperative cancer research organization that treats more than 90% of all children with cancer.
If you’re reading this blog, you probably already know how our family has been affected by childhood cancer. As a parent who has faced this twice, I know the one thing that every family in this battle wants more than anything else: a cure. And the only way to find the cures these kids need is research.
I’d like to ask you to join us in raising money to support research that will one day cure diseases like this. You can do this in two ways:
- Joining our team, Marching for the Maxey Girls. To join, either as a walker (actually attending the event) or a virtual walker (part of the team, but not attending), go to www.curesearchwalk.org and follow the links to the New Orleans walk and our team. The registration fee is $10, but once you’re part of the team you can use the site to raise more money if you want.
- Making a donation in support of one of our team members. You can donate securely online by following the instructions above to find our team’s page on the site, or you can write a check (be sure to include New Orleans CureSearch Walk and Marching for the Maxey Girls on the check) and mail it to:
CureSearch NCCF
The CureSearch Walk
4600 East West Highway
Suite 600
Bethesda, MD 20814
Every donation counts, no matter how big or small. We truly appreciate your support! Please help us spread the word about this on your blog, facebook page, whatever you’ve got. Let me know if you’d like a flyer to print out and post, and if you think your company or school would be interested in being a corporate sponsor or forming a team to attend the walk or just raise money, I can get you more information on that. Also, please encourage other families in the New Orleans area and the entire state of Louisiana to form their own teams. (Or send me their info, and I’ll contact them.) Thank you!
Otherwise, we’re doing pretty well. I did have to take Grant to the doctor this week. He started snoring–loudly enough we can hear him from our room–right after Christmas, and I thought at first it was just a stuffy nose or something, but it hasn’t stopped. Then this weekend we were visiting our parents, so he was sleeping with me, and I noticed that he’s actually having periods of apnea with all the snoring…so we thought we’d better get him checked out. The pediatrician said it’s probably his adenoids (his tonsils look big to me, too), so we’re going to make an appointment with an ENT. He also got a flu shot on Friday, and was very brave for that.
We’ll see how well I emotionally handle our first foray into realm of normal, straightforward childhood medical issues. I’m trying to be sane for Grant’s sake.
I promise to sit down and share some of his funny antics soon. Between the potty training (and associated potty humor) and newfound anatomical curiosity, some of it might not be appropriate content for this site, but I’ll do my best!
Topics: CureSearch Walk | 6 Comments »
CureSearch Walk in New Orleans
By Natalie | January 13, 2010 at 9:29 pm
Update: The walk is now going to be May 1 instead. I guess I was a little premature in making the announcement. Look for details in the next week or so.
—-
I’m very excited to announce that CureSearch, the fundraising part of the Children’s Oncology Group, is going to hold a MileStones Walk in New Orleans on Saturday, May 8 at Audubon Park. This will be the first year we’ve had a walk here. I’ve volunteered to be on the committee, and we had our first meeting last night. Everyone is very enthusiastic, and I think it’s really going to be great. It’s a little early to start signing up just yet, but the things I want you to think about/start spreading the word about are forming/joining teams and corporate sponsorships. I’ll share a lot more details in the next few weeks, but I just couldn’t wait any longer to make the formal announcement.
We’re doing okay. Kirk is busy with work. We’ve been very blessed that he’s been able to work at home since we moved here, but now the company is growing to the point that this week he’s moved into an actual office and will have a few more engineers working there with him as soon as they can be hired. We’re proud of him, of course, for his part in all the growth and success they’re having, but I have to admit we’re really going to miss having him so close during the day.
Grant has already claimed his old office. He said he was going to have to go on some trips and have some meetings when it’s his office. I asked where he was going, and he said Mars. He also filled our dry-erase calendar with appointments in different parts of the solar system, but he assured me that he’ll be home that same day. He’s really enjoyed drawing and coloring lately, and has gone from scribbling to drawing recognizable pictures and even writing his name (although he’s not that confident about it and still wants me to help him) just in the past month. He did draw a Brachiosaurus with five legs last week, though, and everything has six fingers or toes on each hand or foot. He wants them “even” (two sets of three). He’s so funny!
Thanks for checking on us, and I’ll have more walk details soon.
Topics: CureSearch Walk | 3 Comments »
What the boys have been up to
By Natalie | January 5, 2010 at 10:53 pm
Topics: Grant, Video | 17 Comments »
Reflecting
By Natalie | December 29, 2009 at 11:40 pm
I’m reflecting on this month and this year, and as usual, it’s hard to know where to start. It’s been hard, but can I really say it’s been the worst? And if it is the worst, what does that mean? This month was full of sadness and stress–the anniversaries, the memories, Kirk’s dad’s surgery, my grandpa’s stroke, another Christmas where our little family felt somehow even smaller–but it was also the only time when Grant will ever be three years old at Christmas. He learned about the wonder of Jesus and Santa and gingerbread and the fun of giving and getting gifts. While part of me wanted to just skip the whole thing, I knew at the same time that, out of my whole life, these were the moments to cling to and treasure.
And this year…I knew when it started that it would be too hard to bear, that it would take more of me than I had to give. And it was and it did, more than I (thankfully) could have imagined at the time. But it was also the year that Annette was here with us, that we heard her laugh, that I saw Grant love as only a big brother can. It was the only time we had. It was beautiful as much as it was horrible, and in a way I wish it could have lasted forever.
Mandy gave me the Steven Curtis Chapman CD “Beauty Will Rise” for Christmas. The songs are all related to the loss of his daughter. I highly recommend it, and I’ll probably end up posting the lyrics for most of the songs here eventually. I’ll end with this one.
Questions
Who are you God?
‘Cause you’re turning out to be so much different than I imagined
And where are you God?
‘Cause I’m finding life to be so much harder than I had planned
You know that I’m afraid to ask these questions
But you know they are there
And if You know my heart the way that I believe you do
You know that I believe in You
But I still have these questions
Like how could you, God?
How could you be so good and strong
And make a world that can be so painful?
And where were you, God?
I know you had to be right there
I know you never turn your head
You know I’m confused by all this mystery
You know I get afraid
But if you know my heart as completely as I trust you do
Oh, you know that I am trusting you
So is it true that for every tear I cry, you cry a thousand more
As you weep with those who weep?
And are you just holding yourself back
From crushing all the pain
And evil in the world for reasons we just can’t understand for now?
But isn’t there a day of redemption coming?
Come quickly, Lord
Come quickly, Lord
Come quickly, Lord
So who am I, God?
That you would raise me from the dust
And breathe your life and your love into me?
You know that I believe
Topics: Uncategorized | 18 Comments »
Christmas Update
By Kirk | December 22, 2009 at 8:46 pm
Last night Grant told me quite the Christmas tale….”There once was a spooky house with no windows, only doors. It was spooky and haunted. There were witches, and goblins, and mummies, and creatures, and monsters. And they were all dressed up as…chickens. Grrrrr!” Couldn’t have told it better myself.
Topics: Christmas, Grant | 10 Comments »
Grant and Santa
By Natalie | December 20, 2009 at 4:11 pm
Our boy is loving Christmas. It’s not Halloween, mind you, but it’s not too bad. (We’re still listening to the Halloween CD, and yesterday Grant asked me if I wanted to sing Halloween carols. Only in this house would you hear that!) I wasn’t planning to have him take a picture with Santa when we went to the mall last week to look for a few last-minute things, but he insisted that “Santa wants me to sit with him” and “I have to tell him what I want!” There was no line that day, so I wiped the gingerbread cookie he’d been eating off his cheeks, and he was out of the stroller and in Santa’s lap almost before I could tell the people his name. He assured Santa he’d been good, and told him he wanted a “big Transformer thing.” And could this picture be any better?
Topics: Christmas, Grant | 11 Comments »
One year
By Natalie | December 14, 2009 at 10:21 pm
I just read through those first few posts from Annette’s diagnosis. I have no memory of writing them–so much of those days is a blur, while some images will be with me forever–but I definitely remember the shock, frustration, and sadness that I felt then. It’s actually not that different from how I feel now. I don’t remember if or where I slept that night. I remember everything about the little meeting room we were in the next day when the surgeon told us that the tumor was one of the biggest he’d seen and worst of all, that it had spread to her spine. I don’t remember holding her or feeding her the first time after that first surgery. I’ll never forget how much we loved her or how far we would have been willing to go for her.
I know that the story is not over, and I’m clinging to that, but living without her–without both of them–is so very hard.
Topics: Uncategorized | 16 Comments »
Snow!
By Natalie | December 5, 2009 at 12:04 pm
Kirk’s dad had his surgery yesterday and is doing well. He ended up with four bypasses, but it all went as expected, and he’s going to be moved to a regular room later today. He seems to have a great attitude so far, and we’re all proud of how well he’s doing. Thank you for your prayers.
Yesterday Grant saw snow for the first time!
Topics: Uncategorized | 7 Comments »
Thanksgiving
By Natalie | December 1, 2009 at 12:49 pm
Decorating the tree for his room
**update: Ronnie’s surgery is tomorrow morning. We learned late this afternoon that the most recent x-ray shows some possible pneumonia (he’s had a bad cold/cough), but they’re going ahead with surgery.
We’ve had a busy couple of weeks. We visited our parents in the middle of November, and Kirk had to travel the next week, so Grant and I stayed the week to visit some more and help my mom and dad paint the inside of their house. I’ve been itching to redecorate their house the last few years, so that was right up my alley. When Kirk got back, he and I left Grant with Kirk’s mom and dad and spent the long weekend working (him) and doing projects around the house (me). We did work in a date night, too, which is always nice.
On Thanksgiving Day, Kirk’s dad was taken to the ER and then admitted to the hospital with heart-related symptoms. He had a heart attack the summer Maddy died, and has had several stents placed since then. On Monday we learned that he has more blockages now, and is going to need bypass surgery. That will probably happen Thursday. Please pray for him and for all of us who are worried about him.
Fortunately no one was feeling all that festive, anyway. With the holidays and the anniversary of both girls’ diagnoses coming up, this is a tough time of year.
One way that we’d like to turn all of that into something positive is to have a “virtual” blood drive for the month of December. Cancer patients depend on blood products heavily, especially red cells and platelets. I have no idea how many transfusions Annette had, but I’d guess it was on the order of 100. There were weeks where she got platelets every day when her bone marrow was having a hard time recovering, and during the 8 total weeks of radiaiton she had, her hemoglobin had to be kept higher than it did at other times, so she required extra red cells. For Maddy, we were able to do direct donations for a lot of it, but Annette was type O (whereas we’re all type A), so all of her transfusions came from “anonymous donors,” and I can’t tell you how thankful I was every time I saw those words on the side of the bag. So this month, I’d like to encourage you to go out and donate blood or platelets in memory of Madeline and Annette, and let us know through the poll on the right if you do. Let’s see if we can get to 100 donations! Thanks in advance!
Topics: Uncategorized | 12 Comments »
November
By Natalie | November 12, 2009 at 11:43 pm
I can’t believe November is half over already. We’re going to be pretty busy the rest of the month, too.
Grant is keeping us busy and entertained with his antics. He’s trying out a lot of new words lately–things like “language,” “sentence,” and “cooperate.” The funny thing is that he doesn’t totally know what they mean, so he just tries them out in various ways until he finds something he likes. Or he says they’re Spanish words and makes up a meaning for them. We’ve also been doing a lot of painting and playing with Legos (the big kind). Oh, and dinosaurs keep destroying the train table so Mommy has to put it together again. And again. And again.
He’s really going to be able to get into Christmas this year (the gifts, anyway), which should be fun. To keep him busy while I finished cooking dinner the other night, I gave him a sales paper from Kmart that we’d just gotten out of the mailbox and had him draw a circle around everything that needed to go on Santa’s list. Surprisingly, he didn’t just circle everything. There were no “baby” toys circled at all. It was all Transformers, Star Wars, superheroes, dragons and knights, bikes, a scooter, a motorcycle, a basketball goal, and one set of baby dolls that “maybe Santa Clause could bring for Gracie.” That last part sounds sweet, but I’m pretty sure he was just making sure she’d be occupied and not interested in his stuff. (Although he will admit that he does play baby dolls with Grace sometimes. But only with Grace.)
He’s turning into such a boy.
He still talks about Annette and heaven a good bit, although the last several days he hasn’t brought it up as much. I never know what’s going to trigger his sadness, but I’m getting better at recognizing it (even when he doesn’t) so we can talk about it. It’s definitely tough. For all of us.
Her monument was placed at the cemetery yesterday. It’s heart-shaped, like Maddy’s, and they’re both on one long base with vases on each side. It’s still so surreal sometimes. I can’t believe there are two of those stones there now.
Thank you for remembering our sweet girls and continuing to pray for us.
Topics: Uncategorized | 21 Comments »