Monday, September 14, 2009

It's been a little while since I updated. Things have been wild and crazy and fantastic all at the same time.

Last weekend we went to the Iowa vs. UNI game courtesy of Make-A-Wish and the UofI Alumini Assoc. We had awesome seats where the kids got to sit right on the field to watch the game. Afterwards we got to meet some of the players and cheerleaders. The boys got their footballs that were signed by Coach Ferentz signed by about 30 football players too. It was a great day for them.





Then we spent the week in preparation for the BIG day. Saturday was National Childhood Cancer Awareness Day and the big Iowa vs. Iowa State game. I can't even put into words how amazing this day was. We started the day with a tailgate for 150 family members of childhood cancer from Iowa, we were all wearing out Beat Cancer shirts and it was an awesome sight. But the more amazing thing was we weren't the only ones wearing them. You would walk around and see them everywhere! We had people coming to our tent wanting to buy shirts, the press came and did interviews. The Hawkeye cheerleaders stopped by to cheer "Go HAWKS! BEAT CANCER!"

We all later headed over to the game. It was a beautiful day! The Cyclones were 110% behind our children. They all had gold ribbons on their helmets to represent childhood cancer. Many of the teams staff were wearing Beat Cancer Shirts. Even their mascot had a Beat Cancer shirt. It was AMAZING! There was an announcement just before the game sharing why they were wearing the ribbons and a few statistics about childhood cancer.

Overall the day was one I will never forget. I couldn't stop smiling all day, it was just unbelievable. Our message was getting out and people were listening. Even the Big 12 Comissioner requested a Beat Cancer Shirt!





You can still order your beat cancer shirts online at www.beatcancertoday.org for a limited time. We have raised an AMAZING amount of money for Curesearch to help find a CURE for this monster.
Thank you to everyone who supported Beat Cancer Today and helped get the word out. I am so thankful for the amazing families (Horn's, Cunningham's, Hulsing's and Pospeshils) that we were able to work with to make this dream a reality! Saturday went beyond anything we imagined it would be just two months ago. We can't wait to do it again next year, on Iowa's turf!
Christie

Thursday, September 3, 2009

Yesterday our family was invited to the Kirk Ferentz Luncheon which was put on by Children's Miracle Network and University of Iowa Childrens Hospitals. Brent was askd to share our story and Mikayla was asked to do the introduction for Kirk Ferentz who was the final speaker. WOW, was it an amazing day!

We got to meet so many great people. Miss Iowa was there. She stopped by our table and talked with the kids. Mikayla couldn't stop staring at all the sparkles and the crown! She got a signed picture from her, when she asked the boys if they wanted a picture both boys said "NO". LOL Guess they aren't into the pretty girls yet, and that is ok! HA! We did get a picture though.


Brent was given 5 minutes to speak. When we heard he only had 5 minutes I said to him "Are you sure they asked the right person, you can't talk for 5 minutes?" HA, he agreed with me, if you know Brent, talking in front of people is NOT a problem! He did GREAT though and I think he only went a little over 5 minutes.

When he got done speaking Mikayla went up and introduced Kirk Ferentz. This was so cute. She practiced and practiced and practiced saying "And now introducing the man of hour in his 11th year as head coach, Kirk Ferentz!" She even kept practicing as we were waiting for her turn. She was determined to get it perfect and she did a GREAT JOB! Coach Ferentz said it was the best introduction he'd ever had. She was quite proud!

During the event a couple of the speakers showered our family with gifts. First came the owner of Bagolita. They are introducing a new line of Hawkeye bags this weekend at Fry Fest and they brought a purse for Mikayla and myself, they are AWESOME! Mikayla wouldn't let go of hers yesterday, she even had it with her while introducing Kirk Ferentz!



Then another speaker came up to discuss Fry Fest and handed the kids each a pair of Aviator glasses just like Hayden Fry. The kids LOVED these and Tyler instantly put them on and had the crowd laughing! Tyler says he is going to Hayden Fry for Halloween this year. LOL


After the luncheon we were able to get a few minutes with Kirk Ferentz and have him sign some footballs and shirts for the kids. They are so proud of these footballs. The boys have been dreaming up a vision of a Hawkeye theme for their bedroom and these will be the perfect addition to it!

Kirk Ferentz is such a great person. He talked with each of the kids and even brought a little gift for each of them.


And of course some of our most favorite people were there, Dance Marathon. They did the Morale Dance for the crowd. Mikayla kept wanting to go sit with the DM people.



It was an amazing day, we can't thank Children's Miracle Network and Michelle Altmaier enough for inviting us to the event. Our family felt so special yesterday and I am sure it will be something we all remember forever!

It is now officially September and that means it is National Childhood Cancer Awareness month. What are you doing to let people know about childhood cancer? Tyler came home from school on Tuesday and said "Mom, I am going to wear a cancer shirt every day this month to support Childhood Cancer month" It brought tears to my eyes, he wants to help. This thing called cancer has affected every part of our family, some for the good and some not good. But through it all our family has grown together and I am so proud of our kids and the way they continue to want to give back. And they even come up with their own ways to do it.

We are looking forward to cheering on the Hawkeyes on Saturday! The kids will especially be looking for Coach Ferentz and rooting for those Hawks! Have a great long weekend!

Christie


Friday, August 21, 2009

First Day of School

Mikayla started school on Wednesday and she was soooo excited! She was ready to go in no time and even had her hair flat ironed especially for the day. She went to school hopeful of making new friends and a great new year. It was weird to send her off to school and not have the boys around. We did the traditional first day of school pictures, but the boys were missing. We will do those on Monday!

Oh and she couldn't have a first day of school picture without our new family pets. Meet Alex and Addy. They are actually the boys but she is taking care of them while they are away.

She came home from her first day very excited. When I asked her if she made any friends she said "Yep, one" After asking a few questions she said "I just went up to her and said 'do you want to be my friend?' " So there you go her first friend! LOL She was nonstop talking about all the great things she did at school and what a great time she had. I was so glad and know it will be a great year.

Later in the evening we were still talking about school and she said, "Mom, this one girl said I was mean" Red flags went up everywhere because we have been working for the past month on being mean. With her behavior and attitude problems I have been saying "you can't be mean or you won't have any friends" She was quite concerned that someone called her mean. So, I asked some more questions. Turns out the girl budged (big deal in 1st grade!) and Mikayla said "HEY!" she promises that is all she said. The girl turned around and said "your mean, you know that" Of all the words she could have used, that one probably hit Mikayla the hardest because I have told her if she is mean she won't have friends. We talked about it some more and she was ok with it.

Yesterday we had a meeting with the Principal, Guidance Counselor and her teacher. The teacher and Principal are new to the school so were not aware of our situation, the Guidance Counselor knew both boys and had great things to say about them. It was a great meeting and we just shared some of the possible side effects, things we have experienced and informed them a little about what she has been through. We wanted to make sure they alert us of any concerns in her education or emotional state as these are known areas of long term effects. We left the meeting confident that we had the support of our school staff and that helped me to feel better. Some of you that were around at diagnosis may remember we had a bad experience with the school in dealing with Tyler, so I am almost glad we have a new principal and teacher on board.

In first grade during the first week they bring a brown bag home and are to put a few things in that bag that tells a little about themselves. Mikayla was so excited to do this and she chose to put her port in her bag. I had talked with her a while ago about it being her choice if she told everyone she had had cancer or not. I told her no one would know and she could keep it that way or she could tell them. She has asked me if the kids would make fun of her because she had cancer and I couldn't answer that for her, you just don't know with kids. So, I was surprised a little when she decided on Day 2 to announce to the class what she had been through. I think it went well, her teacher, Mrs. Blackford said the kids had lots of questions and Mikayla was a little shocked they didn't know what a port is. In Mikayla's world this is all normal, she doesn't realize how rare it is to have cancer. I am so proud of her for talking about it and now she doesn't have to hide it.

She came home from Day 2 saying that "everyone is my friend, well only the girls" LOL So, she is adjusting well to her new school and loving every minute. Although it did seem to catch up with her last night. She was a little emotional and asked to go to bed at 6:30. She slept until 9:30 got up had a snack and went back to bed. I think school is wearing her out! Hopefully she will adjust to going to school all day, every day. But I do know she is enjoying it. She even asked me this morning why she couldn't go to school tomorrow. :)

We pick up the boys from Sib Camp in the morning and I can't wait! It has been a weird, quiet week and I am ready for my noisy, busy family to be back.

Don't forget to order your Beat Cancer Shirts at www.beatcancertoday.org and put my name as a pickup to avoid shipping. The last day to order is Tuesday! We have sold well over 1,000 shirts! AMAZING! We will get the word out and bring awareness to Childhood Cancer!

Also, continue to pray for Maddeson (cp: Maddesonsfight), I did get a chance to stop and see them this week. They were able to bring Sea World to her and it was a great day. But their moments are coming to an end and my heart aches terribly for them all. It is hard to see a purpose in this. Please pray for the Tersinar family especially in these next few days!

Christie

Monday, August 10, 2009

We had such a great weekend. It seems we are trying to pack so much fun into the last days of summer! The whole weekend was full of fun with people we have met along our journey with cancer and we feel truly blessed to have met each and every one! We have been on the road quite a bit lately and I keep telling myself, school is starting so it will slow down a little. But that never seems to happen at the VanWey house! We won't complain we enjoy every minute of it.

Tomorrow is time for Mikayla's monthly check up. Brent will be taking her to her appointment and I will be staying home. I believe this will be the first time I have missed an appointment, so that may be hard on me. We are going to ask for a Neuro-pshyc evaluation, after talking to some people we feel this will be a valuable thing to see how the chemo has affected her and get a base line of how it affects her in the future. Maybe it will give us some answers about her learning and moods (which have been VERY bad lately!) I am also anxious to see her counts and see how she is doing. I know that she is losing weight, you can see it in her face and some of her clothes are starting to hang different on her the weight loss makes her look taller. I was wondering if she would lose weight, before Cancer Mikayla was a tiny little thing that would get blown over in the wind. Steroids helped to bulk her up quite a bit, it is interesting to see her change. I was going through pictures the other day and I honestly don't remember this little girl.




These were taken on her 4th birthday, about two weeks before she was diagnosed. Do you see how pale she is and the bruise on her leg? That is what I see and wonder how I didn't know. She has grown alot in the past 2 and a half years and she looks different. Her new favorite thing to do is flat iron her hair to take the curls out. This makes her look much older and her hair "so long" as she likes to say!


We will head back to Boone on Sunday to take the boys to Sib Camp. They are so excited. The boys will be missing the first 2 1/2 days of school but I am very pleased that both schools have been very accommodating and helpful in getting them ready for school before they head to camp. When you see their faces when they talk about camp, you know there is no way we could have taken this from them. I can't wait to hear all about it!


If you haven't heard already, we are trying to get the word out about National Childhood Cancer Awareness Day. We are working with a group of 4 other parents to promote this in Iowa (and nationwide) as much as possible. Please visit http://www.blogger.com/www.beatcancertoday.org to get your Beat Cancer Shirt in Iowa or ISU colors (other colors are also available). The Cyclones are currently winning in sales so we need all our Hawkeye friends to help get the word out! (ok Cyclones can order too, its for the cause,right?) If you want to avoid shipping costs and just pick them up from me you can do that. If you have any questions just email me at mailto:cvanwey@gmail.com.


One last thing, but maybe most important. Our friend Maddeson (cp: maddesonsfight)will not find a cure for her cancer. She needs a miracle. Our family loves Maddeson, she lives in Marion, we visited her many times, Mikayla talked to her when she was first diagnosed about losing her hair, we sat in the surgery waiting room with Maddeson's family when Mikayla had her port out and we have been praying for this little girl since the beginning. Right now we ask you pray for her to be able to head on her Wish this Saturday to Sea World. Please keep the Tersinar family in your prayers over the next couple weeks and months. Our hearts are with them!


Please we need a cure. Go to http://www.beatcancertoday.org/ buy a tshirt and wear it EVERYWHERE. We need people to know our children need a cure!


Christie






Tuesday, August 4, 2009

Vacation

We made it home from our vacation. It was a much needed time to relax. It was great to spend time with my dad and enjoy his pool. The weather could have been a little warmer but the kids didn't seem to mind. They had a great time going off the diving board, making up games and having all kinds of fun.

We did have to come home and back to reality though. It is always tough to recover from a vacation. We are working on that now. Here are a few pictures to give you an idea of how our week was spent. I also posted a video of some of their games on Facebook if you want to look there.

This week we have been getting back into the swing of things and quickly realizing how fast school is approaching. Wow, where did the summer go? I am not sure if I am ready for school. The kids will go to register Thursday. They will find out who their teachers are and all that fun stuff. It should be an interesting year. I hope I am ready for it.

Today we were supposed to have a checkup but I think Dr. T is on vacation (at least that is what I was told) so we won't go until next week. I can't believe it is time to go already, I guess I have already lost track of our schedule being just 2 months off treatment.

This weekend when we were driving, I had Tyler alone in the car with me and we had several good conversations. It was a 5 hour drive after all! I asked him how he was doing and if things seemed different for him now that Mikayla was off treatment. I worry about Brenden and Tyler so very much, I know it effected them a lot. I was surprised by his response. He said "It isn't really all that different, except now it just feels like Mikayla is on steroids everyday instead of once a week" Ouch, that hit me. But I know what he is feeling. We have been really trying to crack down on Mikayla and curb some of the attitude she has but it seems to be worse. It is almost like she is on steroids all the time, but we don't have those to blame anymore. This is something we will work on.

I will say I love that Mikayla is off treatment and that we made it through those 2+ years. But it also doesn't feel like the end, even though to everyone else it seems the end. Those fears are still there, the effects are still there, and actually the emotions seem to be more raw now than ever. I don't know if we didn't allow ourselves to feel it before but going off treatment has brought a flood of emotions, today is one of those days.

I will post an update from her next doctors visit. I am anxious to see how much her blood counts have rebounded in 2 months.

Christie

Monday, July 27, 2009

Always up to something....

The VanWey's are officially on vacation!

We started our vacation with a trip to Lost Island Water Park courtesy of Dance Marathon. We spent the day Saturday going down water slides and braving the wave pool. We always have fun seeing our DM friends and the weather was beautiful.

We left the water park and headed to Sioux City. We are spending the week with my dad. The kids were so excited to get here. My dad has a pool with a diving board in his back yard and the kids wanted to get in as soon as we got here (at 10pm!) but we put them to bed instead. They were up and in the pool by 8am the next morning and didn't get out except to eat. It is going to be a fun week of swimming and relaxing by the pool. They are already in the pool again this morning after begging the adults for at least an hour! I will post some pictures later in the week of our pool fun!

I wanted to let everyone know of some exciting things that are going on. You may remember that September is National Childhood Cancer Awareness Month. This year Sept 12th is National Childhood Cancer Awareness Day. There have been many people who have been working hard to make the Gold ribbon, representing Childhood cancer, as well known as the Pink Ribbon is today. A group of parents from Iowa noticed that Childhood Cancer Awareness Day fell on the same day as the BIG game in Iowa. Iowa vs Iowa State. We are hoping to utilize this connection to bring awareness to the state of Iowa. You can get all the details as they unfold at beatcancertoday.org

This is also where you can order your t-shirts to support Childhood Cancer AND your favorite team at the same time. Aren't these shirts perfect?


The cost for the shirts is just $10, you can order from the site and have them shipped directly to you (all orders will ship the end of August, in time for the big game!). Soon you will be able to order online and choose to pick them up from me (or other committee members) to avoid shipping charges. You can also order by mail with the printable order form. Wouldn't it be awesome to fill the stadium with Beat Cancer shirts? Please pass on the website to everyone you know, our whole focus is awareness and we want to get the word out.
Thanks for helping raise awareness for Childhod Cancer. Kids get cancer too!
Christie

Monday, July 20, 2009


The can drive was a great success. The kids enjoyed giving back to Dance Marathon and other cancer families. They did learn that sorting cans is a dirty, messy job. They all said they didn't want this to be their job when they grew up. LOL But they were doing it for Dance Marathon and that made it all ok.

The kids were already talking about what they want to do to make it better next month. They will be doing this once a month until the big event at Dance Marathon. The next date is August 15th, so if you missed us this month come bring them by next month!

Tyler has his goal for the total by the big event set. I think he will make that goal but I don't want to share that goal just yet. I will tell you that the equivalent of almost 5,000 cans were collected this month!

You should have seen Brent hauling the trailer away with those cans. I wish I would have gotten a picture! It reminded me of the scene on The Grinch where his sled is bulging at the seems. LOL

Thanks for supporting Tyler (and the rest of the kids) AND Dance Marathon this weekend. We look forward to doing it again next month.

This week the kids will be at bible school every night, Brent is out of town and mom is getting some much needed down time in the evenings. Perfect timing for a week that Brent is gone!

Have a great week!
Christie

Monday, June 29, 2009

Sooo much fun!

The month of June is quickly coming to an end. It is certainly a month of many memories. We have been running non-stop all month but we are so happy that we can have so much fun these days and we are not complaining! I wanted to share some highlights and pictures from the last few weeks.

I just HAD to take a picture of Mikayla with her LAST dose of oral chemo. What an amazing night!
Oncology Camp
I never fully updated on Mikayla's week at camp. She had an AMAZING year this year. She has grown up so much this year and you could tell. She made so many great friends and was much more social this year. In fact, when we came to pick her up she was happy to see us but when it was time to leave she started crying (WHAT?!?) She didn't want to leave her friends. I was so happy that she enjoyed camp that much but I wanted her home! LOL On the way home she was counting how many years of camp she has left. I have a feeling those girls will be lifetime long friends after their 13 years together!






Flashes of Hope

We also did the Flashes of Hope photo shoots at camp on Thursday. It was a perfect day, no rain but a little hot. We will take it. We were able to photograph 133 kids and all in one day! I can't wait to see the photos come in. The kids LOVED having their photos taken and it was such a great time interacting with the kids at camp.


The Spoonies
We had a the Spoonies from California come and stay with us for three days (wish it could have been longer!). Their son Bailey (cp: SuperBay) had cancer too and finished his chemo just a month ago. They are on a cross country trip to see many things. We were so glad they stopped to stay with us. Their kids were GREAT and my kids fell in love with them quickly. It is amazing to us how we can make friends across the country and feel like we are family. Cancer certainly has brought so many GREAT people into our lives and we are forever thankful for that!




The EARS!!!
Mikayla has been looking forward to the day her port came out forever! She knew that was the day she could get her ears pierced and she was not going to waste any time. She got dressed in her Easter dress, flat ironed her hair and put on a little glitter so she was beautiful for the occasion. She picked out some sparkly stars for her ears and she is so proud to show EVERYONE her new jewels. I swear sometimes I look at her and think we have a whole new little girl. She got glasses, earrings and a port removed all in one month...who is this little girl?!?!





Adventureland with Dance Marathon!
Saturday we headed to Des Moines to have some fun at Adventureland. It was a beautiful day with lots of fun. We got to see so many of our friends and had a great time as a family. My sister (Amy) and her family came with us and everyone had a great time. We arrived at Adventureland shortly after opening and we left just before closing, so it was a fun filled day! Mikayla did scare us a little. She rode the Tornado (her favorite last year) but I think it was a little too much for her this year. She sat out and was a little pale afterwards. She also had a bloody nose on Saturday (she has never had one before!) and the worry started to set in. But she perked up and was leading the pack for more fun in the evening! It was a quick reminder to me that the fear will never leave. And I am VERY anxious to see her counts when she has her next appointment on July 7th.



We also went to Rockwell Collins to watch Brent receive his Good Citizenship Award. They are supposed to be sharing pictures with us and I will post those when we get them. You can see the press release regarding his award at http://http://www.rockwellcollins.com/news/page11770.html I would like to add to the article that Heart Connection was a HUGE part in the success of Flashes of Hope in Iowa and somehow that wasn't mentioned in the article but there is another article coming out that will mention that. It was a great day to see Brent get this award and we are so very proud of him!
We are hoping July will be a little slower for us but we are still planning lots of family time and DON'T FORGET our BIG CELEBRATION on July 11th. We hope to see everyone there.
Christie