It's all set up. Me, Zach and my Mom will be going to Capital Hill March 16-17 to participate in this year's Children's Cancer Awareness and Advocacy Day. We're going straight to the horse's mouth (our elected officials) and try to get money for pediatric cancer research. Pretty cool that we get some training and then have meetings set up with people that have the power to change things. I'm gonna make sure Zach's voice is heard at these meetings. His future depends on it.
Did you know that a survivor of childhood cancer 40 years ago received the same chemo drugs that kids get now? 40 years and no change...something's gotta give people.
We're also participating in the Triangle's first ever CureSearch Walk. Every penny puts us one step closer to fund the trials that could lead to less harmful treatments and ultimately cures. Put your walking shoes (or flip flops) on and come walk with us to help ensure Zach and every other kid has a healthy future. **PS - you can sign up as a virtual walker too and help even though you can't be here in person.
Event ScheduleRegistration/Check In
2/26/2011 9:00 am
Opening Ceremony and Walk
2/26/2011 10:00 am
Event Location
American Tobacco Entertainment District
Downtown Durham - Center area (1.5 mile walk)
318 Blackwell St.
Durham, NC 27701
Registration will begin at 9am, a short opening ceremony will start at 10am and then we walk (approximately 1.5 miles)...upon return we recognize teams and celebrate together.
The opening ceremony consists of two mini ceremonies - the first is a balloon release to honor those children who have lost their fight with cancer, and the second is a medal ceremony to recognize children in treatment and adults and children that are pediatric cancer survivors.
The children in treatment and survivors begin our walk by carrying a banner that says 'These Are The Reasons We Walk' with names of all the patients participating and names of individuals that teams are participating in honor of who have had childhood cancer.
In addition, every person at the walk receives a bandana representing their journey with childhood cancer.
- Kelly Green = I am a SURVIVOR or am Walking on behalf of a Survivor
- Lime Green = I am in TREATMENT or Walking on behalf of a child in treatment
- Mint Green = Walking in MEMORY of a child
- Dark Green = FRIEND or Corporate Supporter
Parking will be at any spaces near the Tobacco Campus
No pets are allowed at this venue and at the walk - per site rule
Walk Route map will be provided via email to participants and team captains. The walk will be approximately 1.5 miles and will begin in the center area of the campus buildings.
Inclimate Weather Plan - TBD - we will communicate via email to all registered participants.
Activities - the committee is organizing face painters, a DJ, and other activities for the walk.
SEE YOU THERE!
Tuesday, February 8, 2011
Tuesday, February 1, 2011
Grenades, playgrounds, and preschool...Oh My!
There was a time where I thought this day wouldn't happen for us. I let the poison of cancer rob me of thinking happy thoughts of Zach growing up. 2008 was by far the worst year of my life because of this. I had to make myself get pissed at cancer to move past all those negative thoughts. I've had to do whatever I can do in order to make cancer just go away. And it seems to have worked. Zach started preschool today. This morning the simple act of packing his first lunch made me so ridiculously happy. I can see all sorts of amazing things in his future now and I love it.
Ta-da! I'm at school :)
We started the weekend before by preparing for today. Went to Target and got the coolest Scooby-do lunch box you've ever seen and some juice boxes. Also went to the park on Sunday to enjoy the break in bad weather. I think every other parent in Cary had the same idea. The park was filled to the brim with kiddies and their parents. I sat down at a picnic table to finish lunch (Wendy's!) and watch Zach. Turns out I had sat down next to two lovely grenade moms.
You know the type. Perfect hair, perfect made-from-scratch lunches with everything organic. Hmmm. This is when I wish I had my own "grenade whistle" from the Jersey Shore cast. Would have come in handy. All I would have needed to do was blow it and Zach and I could have ran to another part of the park where it was safe. I could just see this innocent little lunch going so wrong. One mom ignored me completely - even turned her back to me in case I didn't get the picture that she wasn't interested in talking to me. Interesting. The other mom didn't ignore me, but I wish she had.
She made everyone eat grapefruit slices before they could have a cupcake. I watched her closely to see if the kids did as she told them too...maybe I could learn something here. The little girl spat out that grapefruit all over the other pieces and shouted that she would not eat that 'stuff'...now it's getting entertaining. Grenade goes off! Perfect mom proceeded to scold the girl (who wasn't her child) and launch into a extremely detailed story as to why she shouldn't spit out food on everyone else's. Wow. I had to stop myself from starring.
Before she turned to me and started scolding me for starring I hustled Zach outta there, but not before finishing our not so organic fries and chicken while she watched. I can only hope Zach isn't in the same class as these kids. Turned out we didn't have to worry this morning. I didn't recognize any of the kids so we're all good for now.
We get to work on Valentine's Day cards for next week when Zach gets home and I'm so looking forward to this with him. I find myself looking forward to a lot these days with my Zach-man. He's gotta wear shades his future looks so bright! Oh yea!
See you guys at the CureSearch Walk on Feb. 26th!
Thursday, December 23, 2010
The Christmas Squirrel
For your own peace of mind, do not leave anything shiny around my child. He'll snatch it like a thief takes a purse from a little old lady. I have been searching for my wedding band for over a week now and Zach has sit back and watched me crawl around on the floor checking under the dressers, under the bed, going through my purse and all over the car. That sly kid had my ring the whole time. The thought had dawned on me to check his room since he's gotten a penchant for hiding things...thanks Branden and Cameron for showing him some really good hiding spots! However, I wanted to not jump all over his case and was just thinking I was having a late 20's breakdown of my mind. Surely I had misplaced the ring. Right? Right!?
That would be a big, fat NO. While on the phone with at ZTC donor last night, I witnessed my little squirrel as he came in my room and went right to my jewelry box. He proceeded to rifle through it like a pro and produced a diamond stud. Wow. What a pro. Had the balls to come in and take it right in front of me. Hmmm. Got me thinking again about how my ring may be in his room. I get off the phone and promptly forget about my ring. This morning while Zach was still sleeping though I suddenly remember and run into his room while he's not there to distract me again. Sneaky squirrel. I look under his bed and find all kinds of stuff...no ring though. Adam checks his closet and finds my tweezers and nail clippers. Shiny objects. I'm sitting in the floor wondering where this boy could have put my ring and Adam jumps up and reaches for the piggy bank. We share a Ahhhha moment and decide to empty it out and check it. Among Zach's money we find a few paper clips, casino chips and behold...my wedding band. Lesson learned. Check the piggy bank first next time.
We also had a visit to Duke this week. On Monday. And we're still waiting for results today. Thursday. I think my hair is falling out from all the pulling on it I've been doing while I wait for this stupid phone call. I have been taking this frustration out on presents this morning. They are taped up real good. Family is not gonna be happy with me for all this tape. Oh well. Better to have less tape at the end of the day than hair.
That would be a big, fat NO. While on the phone with at ZTC donor last night, I witnessed my little squirrel as he came in my room and went right to my jewelry box. He proceeded to rifle through it like a pro and produced a diamond stud. Wow. What a pro. Had the balls to come in and take it right in front of me. Hmmm. Got me thinking again about how my ring may be in his room. I get off the phone and promptly forget about my ring. This morning while Zach was still sleeping though I suddenly remember and run into his room while he's not there to distract me again. Sneaky squirrel. I look under his bed and find all kinds of stuff...no ring though. Adam checks his closet and finds my tweezers and nail clippers. Shiny objects. I'm sitting in the floor wondering where this boy could have put my ring and Adam jumps up and reaches for the piggy bank. We share a Ahhhha moment and decide to empty it out and check it. Among Zach's money we find a few paper clips, casino chips and behold...my wedding band. Lesson learned. Check the piggy bank first next time.
We also had a visit to Duke this week. On Monday. And we're still waiting for results today. Thursday. I think my hair is falling out from all the pulling on it I've been doing while I wait for this stupid phone call. I have been taking this frustration out on presents this morning. They are taped up real good. Family is not gonna be happy with me for all this tape. Oh well. Better to have less tape at the end of the day than hair.
For the first time, I have taken a few pics of Zach during his routine cancer check. No scans this time, but tons of other tests to pass the day for us.
He's passing time in the waiting room by playing.
The fear starts to set in.
He thinks we can't reach him in the corner. And then contemplates his choices.
This was not fun for him. The actual blood draw isn't so bad, it's the build up that gets us. This was his, "I'm glad it's over" face.
Back out to the waiting room. The blue and green dinosaur made the blood work somewhat worth while to him. That and coloring.
Finally in the room to see the doctor and we're going on past 2 hours being here. I didn't use my Duke brain and didn't pack enough food so we resort to playing games of hide and seek.
He loves a good game of hide and seek. Especially when it involves wallowing all over the not-so-clean hospital floor. This smile is for Mommy as I freak out about germs...
I took these while at Duke by myself and they aren't the greatest, but I wanted to show people that even without scans, these visits aren't easy for kids and parents and that's why we collect toys for kids, like Zach, who are there all day and parents either forgot, or like me, didn't put on their good thinking cap and didn't realize I'd need more toys today. I hope this shows people what a general day at Duke looks like. Minus chemo. Minus sedation. Minus not eating. Minus throwing up. You get the point. This was actually a great day at Duke, even with my forgetting to pack more food and toys. An easy day some would say.
We're waiting for results and while it would be a really great Christmas present for me, but I'm going to take what I've got and just trust that Zach is as good as he looks. Those results will be negative and he'll still be NED. However, Santa, if you are reading this, please make Duke call me and tell me that my miracle child is still NED. It would just make me feel better. Merry Christmas ya'll.
Thursday, December 9, 2010
Holly's World: Bee-otch
Holly's World: Bee-otch: "So the time has come that Zach has learned one of many words he shouldn't say. Don't ask me why I thought those little ears wouldn't h..."
Bee-otch
So the time has come that Zach has learned one of many words he shouldn't say. Don't ask me why I thought those little ears wouldn't hear me, but as I'm telling Adam about our experience of having Zach's pictures made and about the lady (Bee-otch, not just plain B*tch) that was taking the pics...Zach decides to listen for once and then repeats the word over and over again. Then it got interesting. He started putting it together in a sentence and laughing, as in, "Daddy, you are a Bee-otch! hahaha!" hmmm.
I know as parents first of all I shouldn't have said that word, but second - we shouldn't laugh when he says things like that, but man was it funny. In my mind, I wasn't thinking about what he was saying, but how he said it. It was one of the clearest words he's ever said. On top of that, he used it in a few different sentences and was able to get the sentences correct. Examples: "You are a bee-otch.", "My Mama said you were a bee-otch." and my personal favorite, "Why are you being a bee-otch?"
All this from a kid that has been going to speech therapy to help him pronounce words correctly...it seems to be working better than I'd originally thought.
So far we've put a lid on the word and he knows he isn't supposed to say it again, but you never know when he'll decide to put it to good use in the future. I'm thinking Walmart or Christmas will be the place he'll decide to use his new word. Always keeping it interesting at the Leggett Family Christmas!
Obviously, Zach is doing quite well these days and I couldn't be happier about that. He helped me make our first ever gingerbread house - you tell me how you think it turned out.
He goes back to Duke on Monday, December 20 for a six month check up. He'll have lab work, urine tests and a physical. We've been given a wonderful gift this year - we're far enough out from treatment Zach doesn't have to get a scan this time and doesn't go back to Duke until June 2011. Merry Christmas to me!
We're also going to plan on taking toys to Duke that day to make the most of our trip. The toys Zach's Toy Chest donates are the only toys the Valvano Day Hospital receives. I am hoping to keep their toy chest stocked again this year. We'll see!
Thanks for keeping us in your thoughts and prayers - I truly believe they have gotten us where we are now and will continue to help us in the future. Merry Christmas!
I know as parents first of all I shouldn't have said that word, but second - we shouldn't laugh when he says things like that, but man was it funny. In my mind, I wasn't thinking about what he was saying, but how he said it. It was one of the clearest words he's ever said. On top of that, he used it in a few different sentences and was able to get the sentences correct. Examples: "You are a bee-otch.", "My Mama said you were a bee-otch." and my personal favorite, "Why are you being a bee-otch?"
All this from a kid that has been going to speech therapy to help him pronounce words correctly...it seems to be working better than I'd originally thought.
So far we've put a lid on the word and he knows he isn't supposed to say it again, but you never know when he'll decide to put it to good use in the future. I'm thinking Walmart or Christmas will be the place he'll decide to use his new word. Always keeping it interesting at the Leggett Family Christmas!
Obviously, Zach is doing quite well these days and I couldn't be happier about that. He helped me make our first ever gingerbread house - you tell me how you think it turned out.
It was pretty until the roof wouldn't stay on since someone kept eating all the icing.
He goes back to Duke on Monday, December 20 for a six month check up. He'll have lab work, urine tests and a physical. We've been given a wonderful gift this year - we're far enough out from treatment Zach doesn't have to get a scan this time and doesn't go back to Duke until June 2011. Merry Christmas to me!
We're also going to plan on taking toys to Duke that day to make the most of our trip. The toys Zach's Toy Chest donates are the only toys the Valvano Day Hospital receives. I am hoping to keep their toy chest stocked again this year. We'll see!
Thanks for keeping us in your thoughts and prayers - I truly believe they have gotten us where we are now and will continue to help us in the future. Merry Christmas!
Wednesday, November 24, 2010
scanxiety with no scan?
Even more changes this week. My job was a bust and didn't happen, but we found a new home so we'll all be together again under one roof. Some things just happen for a reason I guess. At least that is what I keep telling myself. I contacted Duke about Zach's December visit and was informed they are not doing a scan this time. To say I was thrown for a loop isn't correct - I was blindsided by this new information and not entirely happy with it.
To a parent of a cancer kid, scans are not your best days by any means, but the scan itself represents something solid that I can see for myself that the cancer is still gone. Blood work and urine tests just aren't enough for me...I've got to have proof I can see. On the flip side of that, Zach doesn't have to fast and drink any nasty contrast or have any IV's this time. I'm really happy not to have to deal with all that crap, but I still want something concrete to prove to me that this stupid crap is still gone and my baby is good to go. I know I'm a hot mess right now, but it is what it is. I'm working through my fears and trying to do what is best for Zach.
Not having another CT scan is good for Zach - it means no radiation, no hunger, no IV pokes, no throwing up after meds, not such a sucky day at Duke - you get the picture. It also means that Zach is far enough out from his treatment plan that he only needs another scan next June and then none for the rest of his life. I can't even wrap my brain around this concept of not having this routine anymore, as abnormal as a routine it was, it was still our routine...weird. So I've struck a deal with our oncology team that we'll continue to do urine tests, blood work and a physical exam when at Duke, but no scans until June 2011 and then no more ever unless there is reason. The urine is a huge deal for Zach since that test alone is better than looking at his bloodwork. Duke sends his pee cup to the Mayo Clinic for testing and as longs as it is within the normal range, we're good to go - no neuroblastoma.
Finding all this information out so close to Thanksgiving has made me really think more than normal. So this year I'm thankful for many things, but above all, I'm thankful to have a happy and healthy boy on my hands along with an awesome husband and great family. Happy Thanksgiving ya'll!
To a parent of a cancer kid, scans are not your best days by any means, but the scan itself represents something solid that I can see for myself that the cancer is still gone. Blood work and urine tests just aren't enough for me...I've got to have proof I can see. On the flip side of that, Zach doesn't have to fast and drink any nasty contrast or have any IV's this time. I'm really happy not to have to deal with all that crap, but I still want something concrete to prove to me that this stupid crap is still gone and my baby is good to go. I know I'm a hot mess right now, but it is what it is. I'm working through my fears and trying to do what is best for Zach.
Not having another CT scan is good for Zach - it means no radiation, no hunger, no IV pokes, no throwing up after meds, not such a sucky day at Duke - you get the picture. It also means that Zach is far enough out from his treatment plan that he only needs another scan next June and then none for the rest of his life. I can't even wrap my brain around this concept of not having this routine anymore, as abnormal as a routine it was, it was still our routine...weird. So I've struck a deal with our oncology team that we'll continue to do urine tests, blood work and a physical exam when at Duke, but no scans until June 2011 and then no more ever unless there is reason. The urine is a huge deal for Zach since that test alone is better than looking at his bloodwork. Duke sends his pee cup to the Mayo Clinic for testing and as longs as it is within the normal range, we're good to go - no neuroblastoma.
Sunday, November 14, 2010
The countdown begins...
So lots of changes are happening in our lives these days...I have a part-time job back in Cary (woo hoo!) and start Tuesday. Nowhere to live yet, but its a work in progress and we'll be staying a few days with our VERY GOOD FRIENDS while we look for a new place. Hoping to be in a place of our own before Thanksgiving...it was making me sad to think that we wouldn't be able to put out our Christmas decorations this year since we've been staying with family. Now I'm getting excited again about all being together and happy and having a place to call home.
At least home for 6 months before moving again! Past ready to be settled down in a permanent home. I just want to clarify that we are so very grateful for having such wonderful family and friends that help us, but I'm am so ready to just have a home of my own again.
We've got the toy drive starting Friday, November 26th - that's right...BLACK FRIDAY! Lots of good deals, pick up something for Zach's Toy Chest. It will make your day and theirs when you do this - it is a great feeling to know that you've helped make someones day a little bit better.
Zach is also having his visit to Duke for a cancer check and scan in December. Not sure on the dates just yet, but will post more when I have that info. My scanxiety has started without even knowing the dates...I am going to have to start mediating or something to relax myself.
At least home for 6 months before moving again! Past ready to be settled down in a permanent home. I just want to clarify that we are so very grateful for having such wonderful family and friends that help us, but I'm am so ready to just have a home of my own again.
We've got the toy drive starting Friday, November 26th - that's right...BLACK FRIDAY! Lots of good deals, pick up something for Zach's Toy Chest. It will make your day and theirs when you do this - it is a great feeling to know that you've helped make someones day a little bit better.
Zach is also having his visit to Duke for a cancer check and scan in December. Not sure on the dates just yet, but will post more when I have that info. My scanxiety has started without even knowing the dates...I am going to have to start mediating or something to relax myself.
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