Where to begin? It's been awhile since I have written a blog post. We have had a lot happen. The first I would like to say is that we are still on this journey called grief. There's not a day that goes by that our thoughts don't go to Ambrosia. Some days it results in tears and some days it doesn't. There's no way to know from day to day how hard the grief will hit.

With that being said, after Ambrosia passed Wes and I decided to wait at least a year before deciding if we wanted another baby. A year came and went...then another 5 months went by. We decided to start trying again and am happy to say we are expecting a baby boy at the beginning of October.

Braeden is excited to be a big brother again and really wanted a brother this time. It has also brought up a lot of emotions for him in thinking about his sister and wondering about this baby. A few weeks ago Braeden had his yearly well check up. The doctor that saw him is the same one who initially sent us to Kosair with Ambrosia. He came to the hospital after Ambrosia's diagnosis, called after CT scans, and called after he saw her obituary in the paper. He asked how long it had been since Ambrosia passed and said that now that Braeden is older he may start to think a lot more about the situation and have more questions. Just the week leading up to his appointment Braeden had started making a lot more statements that started with "If this baby dies...". I told the doctor that and he said it was normal.

I told the doctor I had told Braeden that I was doing everything I could to be healthy to ensure the baby was healthy. The doctor at that point stopped me and told me that what happened with Ambrosia wasn't my fault. In my heart I know that to be true but I can't help but take precautions as no one really knows the cause of childhood cancer. I also said that I told Braeden I couldn't promise this baby wouldn't die. That is not a realistic thing to promise a kid especially when we have been through what we have.

I have had one high risk ultrasound and so far everything looks completely normal for this baby. All development looks good and nothing out of the ordinary can be seen. I will have another high risk ultrasound this month and the doctor specifically wants to see the liver to ease his and my mind since Ambrosia's tumor was on the liver.

In other news, this year in April our house flooded with almost 20 inches of water. This was the second time since October of 2013. The first time was just 4 months after Ambrosia passed and was incredibly hard and emotionally draining. Last time we had to be rescued by boat. This time I was too paranoid to sleep and evacuated us and our pets before the water got in the house.

So once again we were living in a hotel while repairs were being made to our home. This made it harder for internet access and for me to be able to really concentrate on the CureSearch Walk committee. We have been back in the house for a month now and things are moving along. I have kicked it into high gear for the walk and have sent several letters out to local businesses for sponsorship for this year's walk. We have invited a lot of other nonprofit groups that deal in some way with Childhood Cancer to the walk. I would welcome suggestions for local businesses to contact for sponsorship or if you know if an organization we should invite to set up a table at the walk.

We are looking for more teams to sign up to participate in the walk as well. It is only $10 to register for anyone 16 years old and up and that counts towards your fundraising goal. Anyone under that is free to register. To sign up click this link: www.curesearchwalk.org/louisville

Anyone is welcome to join our team Angels for Ambrosia as well. You can be a virtual walker if you can't make it on walk day which is August 29th at Waterfront Park in Louisville by the Big Four Pedestrian Bridge. Be on the look out for at least one fundraiser coming up for our team. Details on that to come!

Tonight is Relay for Life in my home town. I have seen several people post about it on my personal Facebook timeline. I can feel my blood pressure rise whenever Relay for Life is mentioned. Now in regards to someone doing Relay for Life for an adult who was diagnosed with cancer I don't have any problems. Raising money for adult cancer research is important. And it is important to honor anyone who has had a cancer diagnosis, is a survivor or succumbed to the disease. My problem comes when someone is doing Relay for Life for a child who is diagnosed with cancer. I realize that Relay for Life is EVERYWHERE. Literally almost every small town in America hosts one. And the American Cancer Society is a big organization that advertises these walks nationally. The problem with this is that for every $1 donated for the Relay for Life, only 1 cent from that $1 goes towards childhood cancer research. And that is supposed to cover ALL the types of childhood cancer. That number is appalling. Our children are worth more than that. 

The National Cancer Institute only designates 4% of the federally funded money it receives from the government to childhood cancer research. And again that covers ALL the types of childhood cancer. My daughter was worth more than that. Who knows what she might have accomplished in her life had she been able to grow up. 

This is a topic that of course gets me riled up. With good reason. Had more money been dedicated to childhood cancer research, maybe more effective treatments would have been found to treat the kind of cancer Ambrosia had. If I had known all that I know now about how severely underfunded childhood cancer research is BEFORE Ambrosia was born maybe I could have helped make a difference. Don't wait until it's too late to get involved. Educate yourself and choose the organizations to which you donate your money wisely. Make sure the money you raise to honor a child with cancer actually goes towards childhood cancer research. And not just a penny. 

Yesterday a campaign started to unite all Childhood Cancer organizations to help get the support in Washington, D.C. for designating more money to childhood cancer research. Please consider joining this campaign by visiting this website: http://www.soundoffatcongress.org/nY2f It will help you locate your representatives in Washington and send them a message telling them to #StepUp. If you don't have a Twitter account you can always email your representatives. Search for their contact information by visiting this website:  http://www.usa.gov/Contact/US-Congress.shtml This is all in preparation for Childhood Cancer Action Days happening in Washington, D.C. on June 23 and 24th. 

If you'd like to make a donation to an organization that is for childhood cancer research please consider making a donation to our CureSearch Walk team, Angels for Ambrosia. CureSearch raises money for childhood cancer research and the CureSearch Walk is one of the fundraisers for research. You can make a donation by visiting this page: http://www.curesearchwalk.org/louisville/angelsforambrosia

My sources:
https://www.facebook.com/notes/people-against-childhood-cancer-pac2/where-does-the-money-go-childhood-cancer-funding/385954821882
http://curechildhoodcancer.ning.com/profiles/blogs/my-thoughts-about-the-american-cancer-society
http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html
http://www.amandarileyfoundation.org/childhoodcancerfacts.htm
http://www.stbaldricks.org/filling-the-funding-gap/

This morning started out normal. Braeden woke me up. I proceeded to get him breakfast while he sat down at my computer to watch movies. I laid back in bed perusing my phone while my husband continued to sleep. Soon my thoughts wandered where they always do. To Ambrosia. My memories vary from the good ones to the not so good ones. This morning my mind wandered to a not so good one and it was too much to handle. I broke into sobs. Silent ones at first as I didn't want to disturb my husband. But he soon realized I was crying and I let it all out. Braeden must have heard as he came into the room a short time later. He asked why I was crying and I told him I was missing sister and sometimes I needed to cry. Being the sweet boy that he is he gave me a hug and got in the bed to cuddle with us for a few minutes. Soon after I was okay again and we went about our day.

I still have a hard time recognizing when one of these episodes is going to hit. I don't know if it's because Easter is tomorrow or the fact that Ambrosia's birthday is only a couple of weeks away. All of these things also means that we are getting closer to it being one year since she passed. The other night Braeden said that sister had been gone a long time. So long in fact that he was sure she was 10 years old now. It's funny how time passes differently for a child than an adult. To me it doesn't seem like it's been that long. Only yesterday we were at Braeden's school for a Spring Fling gathering and I had set up a booth about the CureSearch Walk to get people interested in signing up a team to raise money. I also had a picture of Ambrosia from Christmas of 2012. One lady was reading the sign and asked me about her. I started to tell her it was a photo taken at Christmas while we were in the hospital. I struggled with the fact that it wasn't this past Christmas but 2 years ago and had to correct myself.

I worry about Braeden sometimes. On the outside it seems like he is fine. Doesn't seem to have any affects from losing his sister. He's never cried over it. He didn't cry the night she passed. He didn't cry at her visitation or her funeral. That's not to say he doesn't get sad about it because I know he does. Comments he's made have shown that. It may be his age is the reason why he hasn't cried. Or maybe he just doesn't need to. I just hope that down the road something doesn't pop up that triggers an emotional overflow or problems. If it does we will of course reach out to all the resources we can to help him. I am sure however this is just a concerned mommy talking and nothing more.

I have been trying to think of ways to honor Ambrosia and also raise money for the CureSearch Walk in conjunction with her birthday coming up. If anyone has any suggestions please pass them my way.

We are having a Fundraiser at Pinot's Palette here in Louisville on May 17th at 3:30. Participants MUST be 21 years of age. If you are interested please sign up at this link: https://www.pinotspalette.com/Louisville/Class/20415 25% of all sales will go toward the CureSearch Walk! This should be a fun time for everyone! If you've never done something like this before, now is the time! Come out and support a good cause. Here is the painting we will be doing that day:

Well, here I am. Still on this long winding road called grief. It definitely isn't a straight shot from point A to point B. And I'm sure I will be on this road the rest of my life. There are even forks in the road. When I reach one of these forks I have to decide if I'm ready right then to deal with my grief or push it back down until I am ready.

I recently found myself at one of these forks in the road. Most of the time I push my grief back down. I have a lot going on and don't want to deal with crazy emotions. But the other day I found myself watching one of my favorite shows, Long Island Medium. If you've never watched the show, it follows a woman name Theresa who lives on Long Island (go figure) and can speak to people that have crossed over. Now, I am not asking for your opinion on this show. I don't even care if you believe in mediums or if you don't. This is my story and I'm telling you my opinion. A lot of the people she reads are parents who have lost a child. I find myself crying along with their stories (some of which are children who had cancer).

This particular day I was letting tears flow but I could feel myself holding back. I decided that it was time I went down the fork that would let me deal with my grief. I went and got the chest that holds personal items of Ambrosia. Once I opened the chest I started pulling out items one by one. And I let everything I had been holding in out. The sobs and wails that came out of me I haven't heard since the night Ambrosia passed in my arms. Holding her taggie blanket, I desperately held it to my face trying to smell anything that might smell like Ambrosia. The blanket Ambrosia was wrapped in the night she died and that I carried her out to the funeral home van in is also in the chest. I grabbed it and again inhaled hoping to smell Ambrosia or something that would remind me of her.

I pulled everything out of the chest. It still amazes me that everything that is important to me from Ambrosia fits in something so small. Her time here was so short and it's not fair. In less than two months time we should be celebrating Ambrosia's 2nd birthday. Instead we will be mourning. In just over 3 months time it will be one year since she passed. I don't even know how difficult these two milestones will be.

In January I started working again. Almost exactly two years to the day that I had lost my job while pregnant with Ambrosia. It just goes to show you that things happen for a reason. I was meant to lose my job while I was pregnant to prepare for Ambrosia's arrival and spend as much time with her as I could. I got 5 whole months with her before we got her devastating diagnosis. And once she was diagnosed, I wouldn't have been able to work between hospital stays and constant doctor's office visits. So I am grateful that for her entire life I got to spend every waking minute with her. I am also grateful for the time after her passing that I got to grieve without worrying about work.

Alas, that time had to end as the money we had saved up was slowly dwindling to nothing! I started working at a daycare. Luckily, the director of this daycare knew me and my situation coming in. I didn't have to explain my 2 year absence from the work force. I was really worried about going on job interviews and breaking down into tears about why I hadn't been working for so long. My first day the director warned me that one of the kids reminded her of Ambrosia. The little girl she was talking about wasn't there my first day, but she wanted me to be prepared when I saw her. The next day I met who she was talking about. At first I couldn't see it. Probably because this little girl had hair and Ambrosia never got the chance to have hair. But after looking at her while she played I could see some similarities. She had the same dark eyes as Ambrosia and her skin tone was similar. Even her facial expression reminded me of one of the pictures of Ambrosia. Later that day I broke down, I don't know if it was the stress of work and adjusting or seeing this little girl. I imagine a combination of the two. I am grateful though for the understanding of my co-workers.

I have now been there almost two months and things are going well. I love working with kids especially being around the babies and the children around the age Ambrosia would be now. It is rewarding and where I need to be.

Braeden is doing well. He still brings up Ambrosia every once in awhile. He sees her in a lot of things. Especially unexplainable things. He'll say "Sister must have done that!" Last month I took him to the SuperSibs group at the hospital. He actually didn't want to go, but the child psychologist was going to be speaking at the dinner I would be going to so I told him he didn't have a choice! I wasn't going to miss getting to see one of my favorite people. Most of the time he wants to go anyway. He always has a good time and comes home with some cool things they make. That night he came home with a medal they made along with a CD with a cover of the Katy Perry song "Roar" they had written the previous month.

The other night after reading him a couple of books at bedtime he said "If I was in heaven and you were missing me I would come and sit right next to you." I grabbed him up in a hug and asked him if he thought Ambrosia was sitting with us then and he said yes. I told him that he can always talk to Ambrosia in his thoughts and she will hear him.

I am still volunteering with CureSearch and will actually be setting up a table at the APHON (Association of Pediatric Hematology and Oncology Nurses) symposium on the 22nd this month for CureSearch. We have started our team page again for this year's walk. If you would like to donate to our team walk page please visit this link: www.curesearchwalk.org/louisville/angelsforambrosia. I would love for us to be one of the top fundraising teams this year! Especially since I am on the walk committee. If anyone has ideas for fundraising please send them my way. I want this year's walk to be a huge success. You can also start up your own walk team. Even if you can't physically participate in the walk you can be a virtual walker and still raise money for a good cause. Anyone that would like to join our team is also welcome to do so! To sign up to be a walker or to start your own team visit this link: www.curesearchwalk.org/louisville

Thank you everyone for your continued support and for helping to bring awareness to childhood cancer and the much needed funds for research!

It's been too long since I posted an entry. I don't have a good excuse as to why. Things are slowing down around here and I suppose that's a good thing. Since I last wrote we've had a few holidays. Thanksgiving was spent with family of course. Nothing unusual to report. I don't remember getting emotional like I thought I might.

Then came Christmas. I have to admit as it got closer the harder it was to understand that Ambrosia wasn't going to be here to celebrate with us all. I can only imagine the delight on her face and squeals she would have made at ripping paper off of presents. I think that would have been fun for her, as it usually is for children the age she would have been. December 22nd marked 6 months since Ambrosia passed. I can't believe it's been 6 months. Feels like it was just yesterday at times.

New Years Eve was also spent with family, as we celebrate Christmas together with one side of my family then. It's always nice to be surrounded by a lot of people that care for you. My grandmother let me borrow a couple of books to read. One is by a doctor who died and ultimately was told it wasn't her time and came back to share her experience. It was a pretty insightful book and comforting at the same time.

There are moments of despair here and there, but most of the time we are all coping well with our grief. Braeden occasionally mentions us having another baby girl and naming her Ambrosia. He has mentioned this more than once since she passed. The last time he did I told him even if we had another baby girl we wouldn't name her Ambrosia. He said he wanted us to have another baby girl and name her Ambrosia so I wouldn't have to cry anymore. I told him that mommy would still be sad even if we had another baby girl, because she wouldn't be Ambrosia.

The other night out of the blue Braeden wrote a letter to his sister. I didn't ask him to and was surprised when I looked over and realized what he was doing. Every once in awhile he would ask me how to spell something. He didn't want me to see it until he was done. He wants to take it to her grave, but after posting it on Ambrosia's Facebook page someone suggested putting it in a balloon and releasing it. I asked Braeden if he'd like to do that and he said yes. In a few days we will do just that. I will try to take pictures.

A few weeks ago, while on our way to pick Braeden up from school, my husband's playlist started playing the song Gone Too Soon by Daughtry. That song was used in our memorial video to Ambrosia. As soon as it started playing my husband remarked that he could almost listen to it now without crying. It was then that I realized what song it was and immediately burst into tears. I love the song, but I'm not sure I will ever be able to listen to it and not cry. It's a perfect song and I have tried tweeting Chris Daughtry to tell him how much I love it and appreciate it, but have yet to receive a response.

I suppose there will always be triggers that cause us to cry at different times. It's something I am still getting used to and accepting. Today in the mail I received a letter from the Children's Hospital Foundation telling us that a donation had been made in memory of Ambrosia and was being designated to the Addison Jo Blair Cancer Care Center. A friend made this donation and has been thanked for making me cry. I truly appreciate thoughtfulness like this in Ambrosia's name that will make a difference in another family being affected by cancer.

Soon I will be applying for jobs. For some reason this is causing some major anxiety issues for me. I am not sure if it's because it's one more thing to make me realize Ambrosia is gone or just general anxiety about having to find a job after 2 years of none. Whatever the case it is also causing tears at even the thought of going on an interview.

I am working to get ready for a committee rally for the 2014 Louisville CureSearch Walk that is taking place on January 23 at 6:30 pm at the Tumbleweed restaurant on the riverfront. This is an event that is open to the public, so if you are local to the area please consider coming to learn about some volunteer opportunities! We want this year's walk to be successful, especially because our city has the walk on National Childhood Cancer Awareness Day! September 13th! If you can't come but want more information visit www.curesearchwalk.org/louisville then click on Event Info and then Volunteer. It lists all the volunteer opportunities for the walk. Also share with your friends on Facebook, Twitter and other social media!

There will be no more pictures of Ambrosia. That is a hard fact to cope with sometimes. I won't get to take pictures of her growing into a beautiful little girl, her first day of kindergarten or any other milestones. I am a scrapbooker so I take a lot of pictures. Not all of the pictures I take get developed, but the majority do. There will be no more pictures developed of Ambrosia.

This picture is one of my favorites of Ambrosia:

This was taken during our hospital stay last December. We were in for an infection and at the time it looked more and more like we were going to be in the hospital at Christmas. I had a ton of holiday dresses I had bought that I was afraid she would never get to wear, so I brought them all to the hospital. Every day the doctor would come in and ask what dress she was wearing that day. She was so photogenic. It was easy to get her to smile for me to take a picture.

This picture was used for a fundraiser put on by a Major League Soccer team for the A Special Wish Foundation, who granted our wish. So Ambrosia is famous!

Here in Louisville for the past two days some local radio stations have been doing a radio-a-thon for Kosair Children's Hospital. They play stories from families and children who have been treated there. Last year I wanted to do it, but Ambrosia's diagnosis was so fresh and new. This year one of my friend's asked if I was going to participate. I wanted to, but wasn't sure if I would be able. I have always listened to other's stories and cried in the car. I wasn't sure I would be able to get through it. Maybe next year it will be a little easier to share Ambrosia's journey and bring some awareness along with raising money for a fantastic hospital.

Things are starting to get back to normal around here. Wednesday we will finally be able to move back into our house. We have all been growing weary of this cramped hotel room that we've been living in for over a month now. We also have been missing our animals, as we have only seen them very briefly because they've had to be cared for by others because they couldn't be in the hotel with us. I'm very grateful to my aunt and uncle who took them in for us so we wouldn't have to keep paying for boarding.

Braeden has been voicing himself more about his sister. He sees commercials for toys that Ambrosia could be playing with now and says we could have got that for her if she hadn't died. We asked him if he would like to get some toys for another little girl Ambrosia's age to give away at Christmas. He said he would, so we are doing the Salvation Army Angel Tree to buy some things for a deserving little girl. We've also talked about getting an ornament for the tree that represents Ambrosia that we will let him pick out. The holidays are sure to be a rough time for all of us as we celebrate knowing our baby isn't with us.

The other day we went out as a family to a restaurant for dinner. Near the end of our meal a family was seated directly across from us. The first thing I noticed was there was a beautiful baby girl with them. She was adorable and I kept looking over at them. And then all of a sudden I just burst into tears. I had to cover my face as I sobbed. After a minute I was able to pull myself together. We continued with our meal and I pointed out the baby to Braeden. He said she looked like Ambrosia and I agreed. I wanted so badly to go over to them as we were leaving and talk to them. To tell them how beautiful their baby girl was and that I was sorry I couldn't help but keep looking their way. To tell them I had lost my precious baby and to hug and kiss theirs every day. I didn't of course but wish I had.

I am anxious to get back into the swing of advocating for childhood cancer research. Things have been kind of put on hold while we dealt with the flood and our house. I have felt out of the loop. I was finally able to sit and have a chat with the CureSearch person about next year's walk as I am on the committee as the Event Chair. If you happen to live in the Louisville area and would like to be on the committee please contact me by leaving a comment or sending a message on the Angels for Ambrosia Facebook page. There are a lot of different positions to be filled, so if you have experience with fundraising or have contacts that might be willing to sponsor the walk or even if you just feel called to help advocate for childhood cancer research, please consider joining the committee. The commitment is only a few hours out of your month and will be so rewarding!

On October 6th, our house flooded from a flash flood in our area. There was close to 2 feet of water throughout our entire house as we are on a concrete slab, so no basement or crawl space for the water to go in first. This happened just 5 days before we were to leave for Camp Evergreen. In the midst of all the chaos, not once did Wes and I question whether we would still go to the camp. We knew we needed to, for ourselves and for Braeden.

With cleanup happening at our house, on Friday October 11th we headed to Leitchfield, KY to camp Loucon where we would be staying for the next 3 days. I had been to this campsite as a teenager for a Christian music festival called NewSong, but hadn't been back since. We were told before going to the camp that there would be little to no cell phone reception while we were there, and they weren't kidding! It was nice though to put the every day worries away and do what we were there to do.

We got to the camp a little early, but we were greeted by our Family Support Volunteer from Hosparus. Her name is Ruthie and I had talked to her a little before camp as she had been paired with me before and after Ambrosia passed to talk to if I needed anything as she had lost a child herself. After unpacking our car and getting settled in our room, we went upstairs and ate some pizza while waiting for the other families to arrive. Once everyone had arrived, they opened up a space called the Healing Space. Here we set up things that were Ambrosia's or reminded us of her to share with everyone. Fortunately all of Ambrosia's things were spared from the flood at our house so I was able to bring things to set up in our space. Below is what we brought:

After everyone set up their healing space, we all wrote on a huge poster about the loved one we lost. Things like their favorite food, hobbies, even something we didn't like about them. After doing that we shared it with the entire group. Wes had to read our poster as I didn't think I could do it. Again having to say out loud to people that she was gone is hard. The next thing we did was split into groups. The younger kids were one group, a large group of teens, and then the adults were all separated. There we shared a little more about our loss and what we've been going through.

On Saturday, after breakfast we split into our groups again. Braeden made a pillow with pictures of him and Ambrosia with the help of Ruthie. I didn't get to see his pillow until later that day, but I was so proud of him and what he did. Here is his pillow:

On one side it says, I love my sister Ambrosia. On the other is says Love Big brother Braeden. He did a wonderful job, and he knows it too!

While Braeden was making his pillow, the adults were in a group again. We were drawing pictures of what things were like now and how we would like them to be. I couldn't think of what to draw. All I could think was that what I wanted was for Ambrosia to be here with us. That's what I want. It's not possible, but it was all I could think of. In the end I didn't draw anything. Everyone shared their drawing and the only other person there who lost a child had drawn what I wanted. For her son to be here. I was glad I wasn't the only one thinking the impossible.

After our group session, everyone met back up to do a low ropes course. They split us into two groups. Our group went to a course called Whale watching. There was a platform that had a log angled underneath it. The rules were that once you were on the platform or "boat" you couldn't talk. You had to stay away from the green line around the perimeter or you might fall into the "ocean". We all had to get on it and balance it then see how long we could hold it still. It was a little chaotic at first, but once everyone but three of us sat down and were quiet, we were able to balance it for 10 minutes. We could have gone longer but those of standing were getting foot cramps holding still without being able to shift our weight.

The next activity on the low ropes course was blindfolding one of us and having another person give you directions as to where they were being leaded. Wes was blindfolded and guided by Ruthie. Braeden was blindfolded and guided by me. Here are pictures I took while I wasn't blindfolded:

They had us do some silly stuff while we were blindfolded, like hug a sign, which you see Wes doing in the picture above! After the first people were blindfolded, it was time for the other person to be blindfolded. I reluctantly became blindfolded and guided by Braeden. I wasn't sure he could do it, but he did pretty good with the help of another volunteer. 

The next low ropes course was a maze. They made us all get blindfolded this time and put our hands on the shoulder of the person in front of us while they lead us to a maze. Once outside the maze we were guided in one at a time and placed by a rope that we held onto. Then some rules were explained to us, like we couldn't just go under ropes, or untie knots in the rope. If we came across an obstacle we were to reach around it for the rope on the other side. She also said that if we needed help all we had to do was raise our hand and they would show us the way out. This was repeated a couple of times. I caught on pretty quickly that all I needed to do was ask for help. Once they said we could start finding our way out, I did move around a short distance before I decided I just needed to raise my hand. The blindfold was taken off of me to reveal everyone moving in a circle. There was no maze. The point of the activity was to show that it is okay to ask for help. Braeden asked for help shortly after I did. Wes, however, upon realizing we were out of the maze asked us for help to get out. Men are a little more stubborn when it comes to asking for help. He eventually did realize what he needed to do and got out.

After the low ropes course it was lunch time, then camp photo time. I don't know if we will get to see the camp photo or not but I haven't received anything yet. The next activity was pumpkin carving for Braeden. He carved this pumpkin which he called Sunshine for Ambrosia.

The adults did an activity called the Anger Wall. We sat and talked about what made us angry about our losses. We then drew or wrote on a big paper what made us angry. My paper said Lack of awareness and funding for childhood cancer research and had a gold awareness ribbon on it. After everyone was done, the papers were taped up on a wall. We then lined up behind balls of clay. There were people drumming behind us and we counted down. Then with all our might we threw those clay balls at the papers to rip them to shreds. I did it twice. There were some pretty emotional responses in the room. I cried and realized that the anger wall was just making me more angry. I got some of it out, but the need for funding and research is so big that it makes me angry that it's an issue at all. If there was more funding and research Ambrosia might still be alive today. And that makes me angriest of all, that nothing much has been done or is still being done to correct the problem. There are those of us that are trying but we need more support. And support from people that aren't affected by this on a personal level to get involved. Sometimes I feel like only those of us who have been affected are the ones trying to get the change, but we need everyone to be involved to fight for change.

After the Anger Wall, the adults had some free time. Wes and I decided to do the pillow project that Braeden had already done. Here are our pillows:

I was glad we were able to do the pillows, as it is one more thing to help us remember Ambrosia. While we were making our pillows, Braeden was at the Anger Wall. Ruthie said he did great. He wrote on his paper that he was angry his sister died. He was angry that mommy and daddy were sad and he didn't know how to help. I know he wrote down one other thing but I can't remember what Ruthie said he wrote. I was impressed that he was able to express himself. Ruthie said he had very good aim and hit his paper every time he threw one of the clay balls. 
 
Later that night, we had a Burden Basket ceremony. They had a campfire set up and some drums to play. It was explained to us that Native Americans used to set up baskets outside of their dwellings and when they'd come back from battle or hunting etc., they would leave their burdens outside in the basket so they wouldn't bring them inside their house. So we were to write our burdens on a paper and place them in a basket which would then be tossed into the fire. Once we did that, we sang the song that was written for Camp Evergreen. Here are some pictures from the ceremony.

Next came the Pajama party! We all went back to our rooms to change into our pajamas for the party. Once we were all back together, we had a good laugh at some of our pajamas and slippers that were worn. The next thing was games. One of the first contests was a bubble gum blowing contest. Wes didn't participate, but asked for gum and during the rest of the party kept attempting to blow a huge bubble. I got a picture after one burst.

They had a few other contests that we were able to watch, but Braeden soon began to get sleepy and we took him back to our room to sleep.

Sunday was our last day at camp. We woke up and packed all our belongings back to the car. After breakfast, we split into our groups again. Each group wrote things they needed people in the other group to know. For example, it's okay to cry, etc. in regards to our loss. Once we completed that, all the groups came together and shared what we wrote so we would all be on the same page. Once again I was impressed with Braeden and what he had written. Some of the things he wrote down:
I am sometimes sad because my sister died.
I like to talk about my sister.
I'm confused about why my sister died.
It helps when you talk to me about my sister.
But sometimes I don't want to talk, I just want to go outside and play.
I want to make you feel better when you are sad by sharing my collection of rocks!
I am sad about the house.
I want you to know that I am mostly happy.

Those are only a handful of the things he wrote. I was so glad that he was able to express himself at camp about Ambrosia because he rarely does it with myself or Wes. The next thing the camp did was plant an Evergreen tree in memory of our loved ones that we lost. We gathered inside and wrote on a tissue paper our hopes for the future. This was then attached to a string that would be wrapped around the tree and would stay there until it became a part of the earth. There was a ceremony where all the names of who we lost were read along with those of us who were in attendance. Then we all got to put some dirt around the tree to help plant it. We then sang the Camp Evergreen song. I couldn't sing as I was too emotional.

After the tree ceremony we had a little bit of free time. Someone had brought some cornhole games and Braeden wanted to play them on almost every break we had.

The next part of our day was lunch and then a ceremony where we received certificates for attending camp. They also gave us Camp Evergreen water bottles filled with goodies. Then we all trekked back up to the healing space and gathered our loved ones belongings and said our goodbyes. Lots of hugs and tears all around. All in all it was a good experience and I am glad we went. I will leave you with a picture of the Evergreen tree that was planted and a family picture.

The CureSearch Walk was good. I wish there had been more participation in the community. There was a Heart Association Walk the very next weekend where it was reported that 10,000 people participated. It is my hope that next year just as many people take an interest in raising funds for childhood cancer research here in this community. At the walk, I got up and spoke about Ambrosia and why we chose to participate in the walk. I was really nervous to speak, even though it wasn't a large crowd there were still passersby and people up on the Big Four walking bridge that could hear my story through the speakers. Once up on the stage I was able to get through my speech until I had to speak the words that Ambrosia had passed. I had to pause after that as I became emotional. Having to declare it again and in a public setting was hard. Not that I don't live with the reality of her being gone every day, but having to say it out loud to strangers was hard. I was able to get through the rest of the speech and step down. Soon after it was time for the balloon release and the DJ started playing a song that someone had posted to my Facebook after Ambrosia passed. It was the perfect song to play but also caused more tears. Here is the song:

All the participants then went on the walk. Once back at the starting point they handed out awards for the top fundraising teams and individuals. We won 3rd place for team and individuals! We raised $1035 with just our 3 person team. The walk total so far has raised $21,855 out of a $35,000 goal. That's pretty impressive as there were only 8 participating teams! One team raised over $10,000 by themselves. Imagine what we could raise if there were as many participants as the Heart Walk! There is still time to donate to the walk! We have until December 31st to raise money. If you feel so inclined please take a look at the website and donate! http://www.curesearchwalk.org/louisville/angelsforambrosia

Since the walk ended, I was approached by the coordinator from CureSearch to chair the walk for next year. I asked exactly what that would entail and she gave me a description. I have thought about it a lot and have decided to do it. I will have support from a CureSearch coordinator to help guide me and I really hope to make next year's walk a bigger success than this year. Here are some pictures from this year's walk:

The week after the walk I volunteered at the CureSearch booth at the APHON conference. APHON is the Association of Pediatric Hematology Oncology Nurses. I was excited to help out and also to see some of the nurses who took care of Ambrosia that I hadn't seen since our last hospital stay. Walking in to the conference center trying to find where I was supposed to be, I ran into one of the OMO (Outpatient Medical Observation) nurses. She gave me a big hug and immediately the tears came forth. We only got to chat for a minute as she was on her way back to a meeting. I figured out where I was supposed to be and contacted the CureSearch person to let me in to the exhibition area. She came and gave me a badge to make me official.

The booth was brightly colored and decorated with candy jars filled with candy! There was a lot of cool things for the nurses to take and information for them to give to the parents of patients they attend.

I got to see one of my favorite nurses that day. We hugged and cried and talked for quite awhile. It was nice to see her and the other nurses as well. I was glad I was able to help out that day and I hope there are more opportunities to volunteer again!

Here in a couple of weeks we will be going to a bereavement camp for 3 days. I am looking forward to it. There will be activities for Braeden separately from Wes and me. We went to an orientation the other night and got to see a slideshow of things we will be doing and where we will be staying. One of the things we get to do is make a pillow. Each of us picked out pictures of Ambrosia which will be put on transfer paper. Then they will be put on a pillow for us to decorate. I am looking forward to that. There are a lot of other things we will be doing while at camp and I will be taking my camera. Hopefully I'll be able to take some pictures to share.

While at the orientation for camp, the counselor from Hosparus told us that she belongs to an art council group of some kind. Some of the ladies there were talking about a quilt they were making. She said she couldn't say anything to them because of privacy but they were talking about the quilt that is being made out of Ambrosia's clothes. They said it was coming out beautifully. I am really excited to know that it is being worked on and I hope I get to see it soon. It will be nice to have once the weather turns colder to wrap up in.

Recently I began following more groups related to childhood cancer from the Angels for Ambrosia Facebook page. A few days ago I saw a post that ended up taking me to a video. This video just won an Emmy. It was filmed by a group called The Truth 365. If you take nothing else from this blog post, please take this. I am urging you to watch this video and then do what it asks you to do. Share it with as many people as you can think of. Email it, share it on Facebook, on Twitter, or any other social media that you use. The video is almost an hour long. Please make sure you watch it in it's entirety. Even if you have to stop it and come back to it. It's important to watch. I have been doing my best to have a celebrity watch it and tweet about it. I had a little success in getting some celebrities to tweet about a childhood cancer blog post earlier this month. We need this to happen so more awareness can be raised along with funding for childhood cancer. Here is the video:

And here is the web address for it, if you'd rather watch it in a different window than on my blog: http://www.youtube.com/watch?v=oljTL1iuMmY 

I titled my blog post for this group because like I said, if you take nothing else from this post please take away watching this video and sharing it with everyone. It is so important!

I used to be just like you. Yes, you. Reading a blog like this one, or a Facebook page about a child going through cancer treatments. I'd read what the child was going through and shed a tear or two. Feel a little bit of inspiration to do some good. Then my everyday life would creep back in and I'd forget about them. I might have shared their blog or their Facebook page to other people but I never really did anything. I certainly never bothered to educate myself about childhood cancer. Why would I do that? It's never going to affect me. Until the day that it did.

Never, ever did I think I would hear someone tell me that my child has cancer. But they did. And I was totally clueless about everything. I didn't know that almost all the medicine given to children to treat cancer is actually meant for adult cancers. Why do they use it then? Because there are no other options. Only 2 chemotherapy drugs in the last 20 years have been developed specifically for children. Why is that you might ask? There's no incentive for drug companies to develop drugs for children. It's not profitable. How disgusting is that. There is also not enough money dedicated to childhood cancer research to help develop chemo specifically for children.

What's the harm in using chemo meant for adults? A lot actually. Because the chemo is meant for adult bodies, it does a lot of damage to a child. It can cause everything from infertility, hearing loss, heart problems, muscular difficulties, and the possibility of secondary cancers. How is this okay?

Today at the CureSearch Walk, the host talked about how she asked one of the head pediatric oncologists why there wasn't specific chemo medicine for kids. Couldn't they make it? He responded with "It's because children don't vote." Children don't vote because they can't. They are depending on us as adults and we have failed them. Over and over again.

I invite you to read these pages: http://www.acco.org/information/aboutchildhoodcancer/childhoodcancerstatistics.aspx
http://curechildhoodcancer.ning.com/forum/topics/nci-funding-more-lies-damn

Or better yet, google childhood cancer funding statistics and read from several different sources how we are failing our children.

It's time to take action. Right now. Not after your child is diagnosed. Don't be like me. Don't wait until it affects you. Learn all you can now. Make a difference. Stand up for your children, your nieces & nephews, & your grandchildren. Help raise money for an organization that funds childhood cancer research. It doesn't have to be CureSearch, just make sure the organization you do choose is specifically for children. They need all the funding for research they can get.

Write to your representatives and congressmen in Washington, DC and demand more funding be put in place for childhood cancer research. Make a difference.

It's Childhood Cancer Awareness month and I've never been more aware in my life. I'm aware every day that Ambrosia isn't here. I'm aware that just today 36 children will be diagnosed with cancer. 1 out of 5 of those children will not survive. 3 out of 5 of them will experience long term affects from the very treatment that "saves" their life.

Don't wait. ACT now. So that God forbid if you ever hear the words "Your child has cancer" they are followed with "and there is a cure".

More childhood cancer facts & statistics: http://curechildhoodcancer.ning.com/page/facts-1