There is only 8 more days until the CureSearch Walk! To date we have raised $759 out of our goal of $1000. That is not including money that was raised from people buying the hairbows and the jewelry from the Etsy shop. I hope to have those added in soon! I would really love to meet our goal, but I think we've done pretty good considering we only found out about the walk in July. Next year I will be more prepared and hopefully have a lot of fundraiser activities.

I would like to thank, Christin Flygstad and Jenna Bobbitt both for coming up with the hairbows and jewelry fundraisers. It means a lot that people who had not met myself or Ambrosia previously care enough to help raise money for a good cause.

I have been asked by the organizer of the Louisville CureSearch Walk if I would talk about Ambrosia before the memorial part of the ceremony. I told her I thought I could if I wrote something out ahead of time and rehearsed it enough so that I wouldn't break down into tears.

This week I had also been thinking of trying to find out how to get a Childhood Cancer license plate for our state. They have one for breast cancer so I thought Childhood Cancer deserved one too. My hopes were that it could help generate some money for research. I started looking into it and with the help of a friend found out an organization had already started the process for getting one made earlier this year. In order for these license plates to be made, they need 900 people to commit to getting one by paying $25 out of the total cost to reserve one. Once they reach 900 people, the state will make the license plates and when they are ready you go and just pay the remainder of the fee for the special plate. A portion of the money from each plate will go to childhood cancer research and helping families with children who have cancer. Here is the organization's Facebook page: https://www.facebook.com/CureKYKids.

Here is their website: http://curekykids.org/

And here is the license plate!:

If you live in Kentucky, I really hope you think about getting one of these license plates! Even if you send the $25 and never actually get a plate, helping to getting it made would be great!

Thursday last week was a big day for a lot of reasons. First, as I mentioned in the last entry, was the Grief Connection group. Braeden and I arrived and ate dinner with the other group members. Then we broke up in to our respective groups. This night there was only two of us in the parents who have lost a child group. It was the first time for both of us in the group. Our facilitator was the chaplain at 7West for several years. It was a very hard process to go through. Talking about Ambrosia through tears and sharing about her. It's not a normal thing for a parent to have to go through. I should be sharing stories about things she's doing now, not things she did in the past. The other mom and I had a lot of similarities as far as where we are in our grieving process. It was nice to be able to get a lot of the emotions I was probably holding back up until that point out. And while I don't think I will feel "normal" for quite some time, I definitely felt better afterwards.

The other reason Thursday was a big day is that my mom was diagnosed with breast cancer. She will actually be having surgery tomorrow and they will also find out if it has spread or not. Thankfully, because of all the funding breast cancer receives, her kind of cancer is treatable and curable. I am grateful for all of the attention breast cancer receives as it has helped survival rates immensely. I only wish that children's cancer was given the same attention and maybe then Ambrosia would have survived because of great funding and research. My mission now is to help bring more awareness and have children's cancer research and funding be as big as breast cancer or other adult cancers.

While I know my mom will be okay, she will still have to go through chemotherapy. I worry how Braeden will react to it. We told him after Ambrosia passed that she had cancer. That sometimes doctors can fix it and sometimes they can't. I don't want him to worry about his grammy. If an issue comes up we will address it and hopefully put it in terms a 6 year old can understand.

My husband has been grieving in his own way. To the point where it has started to affect him physically. He was certain he was having heart issues. Scaring himself by looking at symptoms. A day or so later, he realized that it's really anxiety. We both have been taking steps towards taking better care of ourselves by joining the Y. It's a way to bond and help work our grief out physically through exercise. I hope we can continue down this road not only to help our grief but our health as well.

Tonight was SibStars at the hospital along with the Mom's dinner. I asked Braeden if he wanted to go and he did. I was a little nervous about being back at the hospital since it was the first time we've been there since Ambrosia passed. I dropped Braeden off at his SibStars meeting and headed to the Mom's dinner. Slowly some of the mom's trickled in and a few of them I knew from previous meetings. It was nice to sit and talk about our children, our experiences going through treatments and caring for our kids. I didn't shed a tear until after the meeting when I went to say hi to the nurses on duty. I got a couple of hugs and so did Braeden. I was told I had to wait for one nurse in particular or she'd be upset that she missed me. We waited for her to be done with her patient. When she came out, she hugged me and told me how strong I was being. That's when the tears came. She follows Ambrosia's Facebook page so she knows what we've been up to since Ambrosia passed. It was nice to be recognized for all I am trying to do in helping to bring childhood cancer awareness and research to the forefront. I hope to do more and more as time goes on and my healing continues.

I got a packet today with posters and pamphlets for the CureSearch Walk. My mission the next couple of days will be figuring out places I can hang posters and set out the pamphlets. Suggestions are welcome!

The Etsy shop sale is still going on through September 2nd with 40% of the cost going to the CureSearch Walk. New items have been added so please check it out!

Thank you for your continued support!

*I actually just remembered something that I was going to write about. I took Braeden to McDonald's after school earlier this week so he could play. While there we ran into a girl from his kindergarten class and her grandmother. We had attended this girl's birthday party earlier this year at Chuck E Cheese. Of course Ambrosia was with us and at the time the grandmother came over and asked us about her. Once she realized she remembered me she asked how my baby was doing. I had to tell her that Ambrosia had passed. She of course said she was sorry, but then she asked if we were going to have another baby. I was a little taken aback by the question, especially from a perfect stranger. So I wanted to address this here in case people were wondering. There is absolutely no reason Wes and I could not have another baby. There is nothing medically at this point preventing us from doing so. However, we have decided to wait at least a year before making any decisions regarding whether we will have another baby. We need to let ourselves grieve for our loss and not try to fill holes in our hearts too soon, as that wouldn't be fair to a baby. Ambrosia can't ever be replaced but we may (or may not) be ready again one day.

Today has been a hard day. It was Braeden's first day back at school. I put a pin on Braeden's backpack of a butterfly that was given to us in remembrance of Ambrosia so he'd know his sister was always with him. On the way to school, I lost it. I kept thinking of how Ambrosia should have been there with us. No matter that she wouldn't have been going to school, she should have been there with us in our family unit seeing her big brother off on his first day back. I just want to shout how unfair it is at the top of my lungs.

After dropping him off at school, we went back home. Wes got ready for work and I sat around until he left. I was determined to clean the entire house and finish mowing the yard, as our mower had quit in the middle of mowing the other day. These things would definitely keep me busy and distracted. That didn't exactly go as planned. I struggled to get started cleaning. I felt myself being distracted a lot by thoughts of Ambrosia. I managed to get the house clean, but the lawn will have to wait until tomorrow.

After struggling to get the house clean all day, it was finally time to leave and get Braeden. Once he was in the car I asked him how his first day went and we went to McDonald's so he could play and get some of his energy out. While Braeden was busy playing, I noticed a mom come in with a Moby wrap on and a baby in it. I immediately had memories of Ambrosia and carrying her in my Moby wrap from 3 weeks old and up until she passed away. Tears were imminent no matter how hard I tried to hold them in. I sat there and cried and wiped away tears as they came, hoping I wasn't attracting too much attention in the corner.
 
Pictures of me and Ambrosia with the Moby wrap:

I am thankful that this week the Grief Connection groups meet. Thursday will mark 2 months since Ambrosia passed and it is also the night of the meeting. It will be the first time I will attend the group for parents who have lost a child. Last time was a newcomer's group where I filled out paperwork and told about my loss so they would know which group to place me in. I feel like I definitely need it and hope it helps get some of these pent up emotions out.

Onto happier things....

A woman who knows my dad from his work has offered to sell jewelry, that she makes while going through cancer treatments herself, to help raise funds for the CureSearch Walk for pediatric cancer research! I am so touched to now have two perfect strangers to me think of ways to honor Ambrosia and help raise money for a good cause. She has made a couple of earrings named after Ambrosia, with purple in them of course, to sell along with other handmade jewelry. Here are the pictures of the Ambrosia earrings:

I love the earrings she has made to honor Ambrosia and all the other jewelry she has made too! 40% of the cost of every item will go to the CureSearch Walk! She is donating her time for free in making these items and only wanting reimbursement for the cost of the beads and materials. This is a great way for us to help raise money for the walk and you get some beautiful jewelry too! Please check out all the jewelry she has listed on her Etsy shop at this link: http://www.etsy.com/shop/bluegrassbeads?ref=l2-shopheader-name

More jewelry will be added throughout the sale, which runs from now until September 2nd. Please take a look!

Also, you can still purchase bows to help benefit the CureSearch Walk. Please email [email protected] with your information and how many bows you'd like to order. It's $5 a bow with anything over the $5 amount going towards the CureSearch Walk.

Thanks for everyone's continued support, thoughts and prayers! They mean the world to us.

I seem to be close to having panic attacks more and more often. They seem to creep up out of nowhere. They come when I am least expecting it. My train of thought will randomly work it's way toward Ambrosia or something to do with Ambrosia and I end up with a sick feeling to my stomach. I can start to feel it bubble up inside me, inching it's way to the surface. If I distract myself by running errands or watching a TV show I can usually stop it from happening right away. That only works for as long as the distraction lasts. As soon as it's done, the sick feeling is back and the need to breakdown is too. I am sure this is not something that will stop anytime soon, so I am resigned to bursting into tears at a moment's notice.

Braeden on the surface seems to be doing well. However, I know his dreams are focused a lot on death. It's not fair that someone so young is having to deal with the reality of death. That he has to worry mommy and daddy are going to die, along with other loved ones. That when it happens he won't see us again. I know it's something that is on his mind a lot because of the way it comes up in conversation or dreams or play.

I am anxiously awaiting the quilt that is being made out of Ambrosia's clothes. I don't know how long it will be before they finish, but I certainly can't wait to wrap myself up in it. I know it will be beautiful like she was. I have another wonderful keepsake that will be coming soon. I will be sharing it after I get it, but for now I'm keeping it to myself.

I will be announcing another exciting way to help raise money for the CureSearch Walk this week. So be on the lookout for a blog post and Facebook posts about it starting on Wednesday!

I will leave you with this from a book called The Next Place by Warren Hanson. It was given to me before Ambrosia passed and I love it's message:

The next place that I go will be as peaceful and familiar as a sleepy summer Sunday and a sweet, untroubled mind. And yet...it won't be anything like any place I've ever been...or seen...or even dreamed of in the place I leave behind. I won't know where I'm going, and I won't know where I've been as I tumble through the always and look back toward the when. I'll glide beyond the rainbows. I'll drift above the sky. I'll fly into the wonder, without ever wondering why. I won't remember getting there. Somehow I'll just arrive. But I'll know that I belong there and will feel much more alive than I have ever felt before. I will be absolutely free of the things that I held onto that were holding onto me. The next place that I go will be so quiet and so still That the whispered song of sweet belonging will rise up to fill the listening sky with joyful silence, and with unheard harmonies of music made by no one playing, like a hush upon a breeze. There will be no room for darkness in that place of living light, Where an ever-dawning morning pushes back the dying night. The very aire will fill with brilliance, as the brightly shining sun And the moon and half a million stars are married into one. The next place that I go won't really be a place at all. There won't be any seasons...winter, summer, spring, or fall - Nor a Monday, Nor a Friday, Nor December, Nor July, And the seconds will be standing still...while hours hurry by. I will not be a boy or girl, a woman or a man. I'll simply be just, simply, me. No worse or better than. My skin will not be dark or light. I won't be fat or tall. The body I once lived in won't be part of me at all. I will finally be perfect. I will be without a flaw. I will never make one more mistake, or break the smallest law. And the me that was impatient, or was angry or unkind, will simply be a memory. The me I left behind. I will travel empty-handed. There is not a single thing I have collected in my life that I would ever want to bring except...the love of those who loved me, and the warmth of those who cared. The happiness and memories and magic that we shared. Though I will know the joy of solitude...I'll never be alone. I'll be embraced by all the family and friends I've ever known. Although I might not see their faces, all our hearts will beat as one, And the circle of our spirits will shine brighter than the sun. I will cherish all the friendship I was fortunate to find, all the love and all the laughter in the place I leave behind. All these good things will go with me. They will make my spirit glow. And that light will shine forever in the next place that I go.

*As I sat down to write this entry, I was overwhelmed with memories of Ambrosia. I looked down and saw that I had started leaking breast milk. My body still even has trouble remembering that she is gone. This triggered an overflow of emotions in me that I think I have been holding in and I had to step away for awhile before I could finish writing.*

Since I last wrote we were able to visit some of my husband's family in North Carolina for a few days. It was nice to get away right before he returned to work. While there Braeden got to visit with his cousin Allie who is not quite 2 years old. She was following him around and he was being so sweet with her. It was like getting a glimpse of what it would have been like if Ambrosia never had cancer. So of course I shed some tears.

The night we returned from North Carolina was also the night before Wes went back to work. Having him home with me for a month was such a blessing and a distraction, keeping ourselves busy with activities. The realization that he would return to work the next day hit me like a ton a bricks and I felt a panic attack coming on. I got through it and the next day before he left I again shed some tears. This was our new reality, me at home with one child instead of two.

Thursday last week was the first meeting of the Grief Connection that I attended with Braeden. It is held at our local Gilda's Club in conjunction with Hosparus. They serve dinner before you break into groups which will be helpful especially once school starts. Since it was our first time there, I went to a Newcomer's group where we filled out some paperwork about us and our loss and then we all shared about our particular loss. Braeden went down to his own group, where we were lucky that there was a pet therapy dog that night. He was pretty excited about the dog and I think it helped open him up. The next time we go I will be in the group with parents who have lost a child of any age.

Saturday was a fundraiser that was organized for Ambrosia before she passed. It was put together by some local gospel groups, one of which my dad sings in. We arrived an hour before the concert began to set up a slideshow of Ambrosia and set out some papers about our CureSearch Walk. People were already beginning to show up. Close to 300 people were in attendance. There was a silent auction and a bake sale along with a love offering taken. In all over $4600 was raised for our family to help with expenses we have accrued with Ambrosia's care. I want to thank everyone who was in attendance that night and gave money. We were truly overwhelmed by your generosity.

That same night, I met a woman who liked Ambrosia's Facebook page after Ambrosia passed. She had messaged me a couple of times asking what Ambrosia's favorite color was or if she had a favorite character. She later asked if she could join our CureSearch team to help raise money. I of course said she could. The night of the concert she came over and introduced herself. She then handed me a letter and asked me to read it. She had started making bows in honor of Ambrosia. Each bow had some purple in it as I had expressed that was my favorite color for her to wear. The bows also had a heart with angel wings attached directly in the center. She sold some bows to help raise money for the CureSearch walk. I was immediately moved by what she had done and was excited how much more could be done.

We have decided to make it so everyone who is interested can buy a bow and a portion of the money goes to the CureSearch Walk. The cost to make and send the bows is $5, we are asking that if you would like to purchase one that you send at least $6 so that $1 from each bow goes to our CureSearch Walk. You can add however much you would like to the cost of the bow and anything over $5 goes to the CureSearch Walk. The bows are triple layer bows and approximately 3 1/2 inches with an alligator clip attached. If you are interested in purchasing a bow for this great cause you can email [email protected]. Once we receive your email requesting a bow along with where you would like it to be mailed (U.S. only please), we will email you back with where to send a check and who to make it out to. When we receive your payment a bow will be mailed to you! I am excited and hope this will raise a lot of money for CureSearch! Here are some pictures of bows she has already sold:

Each bow will come with a message that tells a little about how these bows came to be and to help keep Ambrosia's light shining. Please consider buying a hair bow to help raise money for a good cause! We are hoping to raise as much money as we can for the CureSearch Walk that is on September 14th. After the walk, we hope to continue raising money in anticipation of next year's walk with these hair bows.

Once again, we thank you all for your support in every shape and form! No matter how big or small. All of you have impacted our lives in ways we cannot even begin to express. Thank you for helping to keep the memory of our daughter alive and allowing me to share her story.

I've struggled with what to write about now that Ambrosia is gone. We've settled back into life by keeping ourselves pretty busy. We are going through our entire house sorting things out that can be sold at a yard sale we plan to have. There for awhile finalizing what was going to be on Ambrosia's headstone kept us occupied. I got a call from the social worker from Hosparus who said they wanted to stop by and see us. She also said they had found some volunteers who were willing to make a quilt out of my favorite outfits of Ambrosia's. This meant I would have to go through her clothes that she was still wearing at the time of her passing, as I had already gone through the ones she could no longer wear.

After starting to go through her clothes, I got a little upset. It was a overwhelming being surrounded by things that were hers. Wes had to step out of the room for a second to get something and was also visibly upset. We were able to go through everything and I had 2 boxes of clothes for them to make into a quilt. Along with clothes, I added the Moby Wrap I always wore to carry her in and the two Boppy covers that she always tried to get the lady bugs off of. I can't wait to see the beautiful quilt that will be made out of everything and I am so grateful to the volunteers who are making it.

We took a few things to a local consignment shop to sell that were Ambrosia's. We thought we might get a few more dollars out of them than at the yard sale. They said it would be awhile as there were a few people ahead of us. Wes asked if I wanted to shop around, but in order to do so I would have to walk through the girls section and I just couldn't do it. So we sat and waited. When we they were done going through our things they offered us some money for it and the girl asked if we had gotten a rewards card. I said no. She then punched some holes in one and handed it to me. I started to stop her, because why would I need it? I no longer have a baby to come and shop for. Tears started to flow and I didn't bother to explain.

Most days I'm fine. If anything I don't feel like I cry enough. My baby is gone and I feel like I should be an emotional wreck at all times. I'm not though. Today, I went for an annual appointment at my doctor. This doctor's office is who delivered Braeden and Ambrosia. They knew Ambrosia had cancer and I had recently informed them of her passing. Once I was called back one of the nurses gave me a hug. After being put in a room, while I was waiting to be seen I sat staring out the window at the traffic below. Subconsciously realizing that this appointment was just one more thing to remind me that Ambrosia was gone. The last time I was there was a postpartum appointment after her birth. My doctor who I normally see came in to say hello and hug me. She asked how I was doing and asked if I thought I needed any medication to help me. I politely declined. She said that if at any point it was too much to handle and I felt like I needed something to let them know.

We have been to the grieving counseling twice now with Hosparus. Mostly for Braeden as he seems to have his sister on his mind a lot. Once after leaving a playground he told us he wished sister didn't die because he wanted her to grow up and play. A few days later he told us he had a dream and in that dream he died. He burst into tears after telling us. Later, while Wes was in the bank, Braeden told me that in that dream I died too. I told him to unbuckle himself and climb up in the seat with me. I cradled him and shed tears with him. I didn't know how to respond. I didn't want to tell him that I wasn't going to die because that isn't true. We let the counselor know about both situations. She told us it was okay to start using the term cancer when referring to Ambrosia and what made her sick. To explain that sometimes it's something doctors can fix and sometimes it's not. That as far as we know none of us are going to die anytime soon.

Wes goes back to work next week. I worry about how it will be when he is at work and Braeden starts back to school. I will be alone in the house with nothing to occupy me. A little back story for those of you who don't know me: I lost my job of almost 11 years while I was pregnant with Ambrosia at the beginning of 2012. My position was eliminated. I started going to school in the fall until Ambrosia's diagnosis. Once Ambrosia was diagnosed, she became my full time job. I had to stop collecting unemployment because I could no longer look for work. Doctors appointments and hospital stays took over our lives. We were down to one income (as it is for most families who deal with childhood cancer). We were lucky to have that as I know there are some single parent households who are unable to work at all while their child goes through treatments. We relied on the kindness of others to help supplement our income. Ambrosia was my world. I was her mother and her nurse. It was my full time job.

I am hesitant to find a job at this point. How could I possibly explain my absence from the work force without bursting into tears? I know that eventually it will be good for me to get out of the house and join the work force again even if only part time. I just don't know how long that will be. But as I said I worry about when I am here all alone with nothing but the memories of what was.

I am currently reading this book that I checked out from the Hosparus library:

So far it has hit a lot of things that I have needed to hear. There is a group that meets the 2nd and 4th Thursdays of the month at the local Gilda's Club for Parents that have lost a child. The Hosparus counselor told me today I can join it anytime I feel that I am up for it. I believe I will give it a shot if I can when they meet next week. It will be good to connect with others who have been or are going through the same emotions as I am.

I am going to end this entry here. Just as a reminder we are going to be walking in the Louisville CureSearch Walk in September. This raises money for childhood cancer research. Please consider donating to my personal page: http://www.curesearchwalk.org/louisville/teamambrosia or if you want to join our team you can also raise money on your own: http://www.curesearchwalk.org/louisville/angelsforambrosia . There is no amount too small to donate. This article from the CureSearch.org website shows some of the wonderful research your donations could help fund: http://www.curesearch.org/Researcher-Seeks-to-Understand-the-Inner-Workings-of-Rhabdoid-Tumors/ This doctor is researching the exact kind of tumor that took Ambrosia's life. If there is anyway his research can help another family not have to go through the same heartache as our family then it is a cause worth helping. Thank you as always for your support!
 

As most of you know, we were granted a wish by A Special Wish Foundation, Inc. thanks to one of the Child Life Therapists at the hospital. The most notable wish foundation is of course Make A Wish but unfortunately they do not grant wishes to babies. The child has to be able to express their wish which of course Ambrosia could not as she was not talking. So Taryn, the Child Life Therapist, set out to find a wish foundation that would grant wishes to babies. She located A Special Wish Foundation, Inc. which unfortunately is located in Ohio. She appealed to them to grant a wish for us as we wanted something special to make memories together. She may have made them believe we are a little closer to Cincinnati than we may be. Fortunately for us, once I was in contact with them and was able to send them pictures of Ambrosia they fell in love with her and decided to grant our wish no matter that we weren't in Ohio. I will be forever grateful to them as this ended up being the last outing Ambrosia had.

We decided having a behind the scenes tour of our local zoo (of which we are members!) would be pretty cool. We didn't know what all we might get to do, but the important thing was making memories as a family. We were picked up in a limo bright and early on June 14th and taken to the Louisville zoo before they were open to the public. There we were greeted by the zoo's professional photographer who immediately started snapping pictures. She would accompany us and take pictures so that we wouldn't have to worry about doing so. Next we headed in the administration office where we met the zoo director. He was extremely nice and asked us if we had any favorite animals at the zoo. Braeden made sure he told them how much he likes the rhinos and I mentioned the penguins.

We then hopped in one of their golf carts and headed straight for the rhinos. The rhinos were actually standing up and eating, something I have never seen them doing during all the times we've been to the zoo. The zoo director then decided we could go and pet them! Yes! Pet them! This wasn't something they had planned for us to do but since Braeden said they were his favorite he took us over. He took us back where the zoo keepers are allowed and told us to make sure our hands didn't get in between the fence and the rhinos. He said they liked to be scratched on their ears and on their rears!

After petting the rhinos, we drove around and looked at other animals. We learned more about how they take care of them, their names and even some of their personalities. It was pretty neat to see and learn more about the animals that we've seen several times. The next behind the scenes thing we got to do was feed the giraffes. We got to feed the two baby boy giraffes some honeysuckle branches. And then we were able to feed their mom some cut up bananas and we also got to pet her.

The next thing we got to do was meet the elephants. They have two elephants, one African and one Asian elephant. The Asian elephant unfortunately is not a friendly elephant so we did not get to touch him. The African elephant however was very friendly and we got to touch her and learn more about her.

We then got to pet a penguin! Besides the rhinos, this was the most exciting thing for me. Braeden wanted no part in petting the penguin. I think it was moving a little too much for Braeden's liking and he decided it was too risky to pet.

As you can probably tell by the pictures I have shown so far, Ambrosia was not herself during this trip. She was pretty solemn. Later that night I broke down and cried because Ambrosia was so much not herself. I wanted everyone to meet the happy cheerful little girl we all had come to know. Ambrosia did perk up a little by the time we were taken out to eat at Cracker Barrel right after the zoo. She had started playing a little there at the table. It's one of the last times she was herself.

I will leave you with more pictures from our zoo visit.

After my last entry, we had to increase Ambrosia's oxygen and pain medicine some every day to help keep her comfortable. During one of the visits, I asked the Hosparus nurse if she could ask the Hearts and Hands team at the hospital about getting the paper and ink to get Ambrosia's hand print so I could have jewelry made with it on it. The Hosparus nurse returned with more than just the paper and ink. There was a whole bunch of things to do for memory making. The Child Life therapist and Art therapist were going to come out to our house on Saturday morning to do all of them with us.

Friday night around 8 pm, I had to call the Hosparus nurse because I could tell Ambrosia was struggling more with her breathing. She was retracting quite a bit. We went up on her oxygen. Around 3 am I woke up and went and checked on Ambrosia. She seemed a lot worse than before and I ended up calling the Hosparus nurse again. This time she came out to do an assessment on Ambrosia. After listening to her, the nurse decided to call the oncologist on call and see if they could go up again on her pain medicine and also her oxygen. We were both exhausted but were watching Ambrosia very closely to see if the changes made any kind of difference. It seemed to and the nurse made sure that I was to call her right back out for any reason if I felt like I needed to.

At 9 am, the Child Life therapist and Art therapist from the hospital came to the house. The first thing they did was take a mold of Ambrosia's foot and then one of her hand. Ambrosia wasn't too happy about it but she was so much not herself that she couldn't fight much either. Right after they arrived I noticed Ambrosia started to have a rattle sound when she was breathing. I knew this was not a good sign and immediately called the same Hosparus nurse back out to the house. While we waited for her to come, we made bird's nest necklaces. This was an activity I had missed out on at one of the mom's dinners the last admission in the hospital. Here is mine:

Each bead represents a family member. Braeden also made a necklace and chose his beads very carefully to represent each one of us, including the dogs. The Hosparus nurse came and looked at Ambrosia closely. She then stepped out to make some phone calls to the oncologist on call. When she came back she told me how much they had decided to go up on her pain medicine and also her oxygen. Unfortunately what came next was something I could feel but was not ready to hear. She said that Ambrosia wasn't going to last through the night. I hugged Ambrosia close and let the tears flow.

After a few minutes we continued with memory making. They took Ambrosia's hand print so I could have jewelry made with it. They also took Ambrosia's thumb print and put it on white clay that we can hand out to family. In addition to that they had a canvas and a picture of what we could do on it. It was a family tree with our hand prints. I put it aside for a little later. Wes and I called our respective parents and let them know the news we had gotten. We settled in for a long day of holding and loving on Ambrosia until she passed.

Later in the afternoon, Wes and I decided to get Braeden and make sure he understood what was happening. It was a hard thing to talk about but we all hugged and cried together. Braeden said he understood and after a few minutes of hugging and crying he was ready to go back to playing. As the day went on, the later it got the longer in between breaths it would be for Ambrosia. The chaplain from Hosparus came to sit with us and explained a lot of the process that Ambrosia was going through. He said sometimes it can last for a very long time and she could be like she was for hours. He stayed for quite awhile before he decided to give us more time together as a family.

I had been periodically holding my hand over Ambrosia's heart to feel it beating. There were times that her breathing got to be several seconds in between breaths that I kept thinking after the last one she wouldn't breathe again. And then she would. After awhile we got settled in and decided to watch a show. Within a few minutes of it being on my eyes were fixated completely on Ambrosia and my hand was over her heart. I couldn't feel a heart beat anymore, yet she was taking breaths still even though they were far apart. I kept having to adjust my hand and was still not feeling a heartbeat. I knew then she had passed in my arms.

Wes came and got her and was trying desperately to hear a heartbeat. We both knew she was gone. I called the Hosparus nurse to tell her, who said she was on her way. Our family that was present with us starting making phones calls to tell other loved ones that she had passed. The Hosparus nurse arrived and examined her and said she what we already knew. She gave Ambrosia back to me and we wrapped her up while I held her. The nurse started the process of notifying the appropriate people.

I held Ambrosia and something happened that I had never heard from myself. The deepest most gut wrenching sob came from within. It wasn't a sob or a cry I recognized. I have never felt that much heartache and pain.

A lot of time passed while I held Ambrosia and waited for the funeral home to come and get her. When they arrived, I carried her out to the funeral home's van. I laid her down and immediately embraced Wes and we both cried. After stepping away from Wes, Braeden was right there and buried himself against me in a hug. The chaplain later commented that at that moment he didn't know if Braeden was seeking comfort or giving it, but concluded it was probably both. I held the blanket we wrapped Ambrosia in my hands. Braeden took it and carried it back inside.

After everyone left and it was just Braeden, Wes and me in the house I couldn't believe how silent it was. The silence was overwhelming for me. I also felt completely numb. I ended up waking up around the time Ambrosia usually did the next morning ready to nurse. That moment realizing that I would never nurse her again was one of the hardest.

There is more that I want to write about but will end this entry here for now. My emotions are overwhelming me some so I need to step away.

Thank you to everyone for your support in every way shape and form. It is amazing how many people are touched by Ambrosia and her story.

I know a lot of people are anxiously waiting to hear about our wish trip to the Louisville Zoo this past Friday. I promise I will be writing a detailed entry about our trip. I was actually waiting for our pictures to come from the photographer before writing the entry. Just know that we had a wonderful time and got to do some cool things! It was definitely something we won't forget.

After our trip to OMO last Thursday, I noticed Ambrosia was acting less and less like herself. She is barely smiling or reacting when someone does something to try and make her smile, which is not something that has ever been a problem in the past. She is playing some but minimally and again with no smiles or laughing. Kourageous Kids came out yesterday and we were officially admitted with them even though they had been out a couple of times prior. While they were here I remarked how much I had noticed a change in her. The nurse decided to come with me to OMO for our appointment today to ask some questions about her pain management.

When we got to OMO today the nurse from Kourageous Kids was there. She asked the OMO nurse if they could put a probe on to check Ambrosia's oxygen level. Her oxygen was lower than it has been recently so she was put on some oxygen. The Kourageous Kids nurse also talked a little to Dr. Cheerva about her pain medicine and it was decided to up her medicine to twice the amount of what she had been getting. Dr. Cheerva decided it would be a good idea to get a chest x-ray while we were there to get a better understanding as to what was going on. When she listened to Ambrosia's lungs she said she was hearing very little breath sounds coming from her left lung where the tumors are.

The child psychologist had also come to the appointment today and spent the entire time I was there with me. She walked with me to get Ambrosia's chest x-ray. Ambrosia's NJ tube had also gotten clogged yesterday so it was replaced right after the chest x-ray. After all that was done we walked back to OMO. Dr. Cheerva was there looking at the chest x-ray. She called me over to look at it. She explained how the tumors were much larger now. So much so that they have pushed Ambrosia's heart over from the middle of her chest towards the right side of her chest. She showed me a comparison from the last chest x-ray to this one and it was obvious as to how much the tumors have grown.

The child psychologist stayed out to talk to Dr. Cheerva while I went back into our room and waited. Shortly thereafter the child psychologist came back in the room. She told me that she asked Dr. Cheerva if she could possibly try and figure out how much time we have left with Ambrosia. A lot of tears were shed and we talked about a lot of hard things while we waited. Dr. Cheerva came in and said that while only God knows when Ambrosia will pass, she thinks we only have a week or two left before she passes.

She explained that what she had to tell me next was hard for her to say but she needed us to know that at this stage Ambrosia will be considered DNR or Do not resuscitate. She said that it was likely Ambrosia would encounter an infection if the tumors persist and collapses one of her lungs. It would be easy for an infection to present itself. She asked if we would be comfortable only treating the fever that would accompany the infection rather than treating it with antibiotics as doing so would only delay things by hours or a day. She explained they would do everything in their power to keep Ambrosia comfortable and keep her pain under control. We no longer have to go in to OMO for anything if we don't want to. No more labs need to be drawn. We stopped a lot of her medication except for pain medicine and nausea medicine. If I feel Ambrosia needs to be assessed I can call Kourageous Kids who will send their nurse out to look at her. The nurse will then talk to Dr. Cheerva and adjustments will be made if needed to keep her pain under control.

In addition to the pain medicine, Ambrosia now is on oxygen at home to help her breathing. We were brought a machine for home and also a portable tank to bring with us as we go places. This is a new adjustment for us and new equipment to learn about but it is definitely necessary in keeping Ambrosia comfortable.

All of this has been a lot to take in. We knew our time was limited but I do not think we were prepared for the news we heard today. My posts on here and on Facebook may become even more sparse than they have been lately as we spend as much time together as a family as we can. Please keep us in your thoughts and prayers. I also ask that unless you are an oncologist you do not suggest a miracle procedure that you know of that will save Ambrosia. Her doctors are remarkable and if there was a cure for her RARE (and I stress...RARE) cancer they would not hesitate to implement it. Thank you for your respect in this matter.

On Monday, we went back to OMO to have Ambrosia's numbers checked. Dr. Cheerva saw us and we talked a little about still doing the irinotecan chemo that goes through her port. At the time Dr. Cheerva said she likes to give chemo at least 2 rounds before deciding it's not working. We planned to have numbers checked again on Thursday and possibly starting the irinotecan back up next Monday. Ambrosia's numbers on Monday were good.

After leaving OMO, I contacted the nurse from Kourageous Kids to tell them we were home for the rest of the day so they could see us. The nurse and the social worker came to the house to see us. It was only an initial meeting as they were still waiting on the medical records from the hospital for Ambrosia so we could be officially put on the program. They explained that we could call anytime and someone would come out to our house if we needed them. They said to ask for any help we might need, no matter how silly the request might seem. They also said they would come out and see us as many times as we needed them to, even if it was twice or more in one day. They can also come out fewer times. The only requirement is Ambrosia needs to be seen every 14 days at the least.

Tuesday, I got word that our wish from A Special Wish Foundation, Inc. had been granted. We will be picked up in a limo tomorrow morning bright and early and taken to the Louisville Zoo. There we will be meeting the Zoo director and be given a behind the scenes tour before the zoo opens. We will have the entire zoo to ourselves! They will have their staff photographer on hand to take pictures so that we don't have to. Afterwards, the limo will be taking us to Cracker Barrel for breakfast. I know we will have a great time and it will be a wonderful family memory.

Wednesday, the social worker from Kourageous Kids came back to see Braeden. She also brought her intern that is working with her for the summer. The intern played with Braeden and his toys while I talked to the social worker. She explained that we are eligible for 13 months of services after Ambrosia passes, but she said really they will be there for however long we need them to be. That was good to know. She told me about a fishing trip they will be having next Tuesday that she hoped Braeden could attend during the day. I know he would enjoy that especially since she said where they fish the kids sometimes catch upwards of 30 or more! We talked some about having a quilt made out of Ambrosia's clothes for me and also how Braeden recently became attached to a bear. I think we may make a Build a Bear and dress it in one of Ambrosia's outfits for him so that he will have a piece of his sister with him all the time. The social worker explained they have 500 volunteers in this county alone and if there was anything we needed they would find a way to get it done. I know having this kind of support will definitely be a blessing.

Today, we went back to OMO to check numbers again. Ambrosia's platelet count had decreased some but not enough to need a transfusion. Dr. Cheerva was there to see us again today and after pressing on Ambrosia's belly she is fairly certain the tumor on her liver has gotten bigger. I feel it has too, as Ambrosia's belly has looked a little more distended than usual. Dr. Cheerva then said she wasn't sure she was comfortable going forward with the irinotecan and asked if Wes and I had discussed it. We had and we are okay with only continuing the seraphanib that I have been giving her at home, which is an oral chemo. Dr. Cheerva said she doesn't want to unnecessarily put Ambrosia through chemo that will only lower her counts and put her at risk if it is not going to have any affect on her tumors. It would only mean more trips to OMO, blood transfusions, platelet transfusions, and a lot of hassle when we could be at home spending quality time together. We decided to revisit the subject on Tuesday next week when we go in for them to check her numbers. 

After coming home from OMO, we had a package from A Special Wish Foundation, Inc. It had T-shirts for us to wear tomorrow on our special outing. It had a lot of toys for Ambrosia and Braeden along with a check for us to spend at the zoo on souvenirs. There was a letter explaining our entire day, along with letting us know that Cracker Barrel would be taking care of our meal as well. I am sure I will have a nice long entry to write about our day tomorrow and how special it was for us. Right now I should go to bed as the limo will be picking us up at 7:45 am!