It was two years ago that Ava took her last breath. It seemed to happen so fast. We found out her tumor had grown and two days later she was gone. There were signs that she wasn’t getting better. I don’t think we wanted to see them. She wasn’t eating or drinking. There was talk of a feeding tube. She couldn’t void her bladder. Her little body was shutting down. I was so angry at her body for failing her. It wasn’t supposed to grow a tumor that would kill her. It was supposed to be healthy.
I haven’t let myself feel all the emotions that come with Ava being gone. I’m trying to remember that’s okay. That my mind will allow me to feel what I can handle. I guess right now I can’t really handle much. It just hurts so much to know she isn’t here. I can say the words but I don’t really believe them. I still feel like I’m in a dream. It didn’t happen. I will wake up and she will hug and kiss me and everything will be okay.
She finally got the baby brother she wanted, only he won’t know just how awesome she was. He will have to hear from us about her instead of getting to know her himself. This is not how it should be but this is our life now. Forever thinking of how it would have been. What funny things would she be saying? Who would be her favorite characters? Would she be looking less like a little girl and more grown up? Would she still love puzzles? The questions are never ending and I don’t have any answers to them.
I do know that she loved us and she knew how much we loved her. I can take comfort in that.
While your child starts school today, we are thinking of a sweet girl who would have been starting 1st grade. Ava loved school! She would come home each day wilth her assignments and crafts and tell me all the fun things she got to do each day. One of her favorite things about school was picking out her outfits for the week. She really was such a fashionista! She had to wear a dress every.singe.day. and a pretty bow.
 |
| Ava and her friend Chloe. |
She had a special friendship with two of her classmates, a little girl and little boy. It was so sweet how she would talk about her friends so much and i can imagine all the classroom fun they had!
The first day of school is a very exciting and sometimes nerve wracking time. We would love for Ava to be experiencing her first day. Of course this is sombering for us. We miss Ava so much and know that there will be many "should of" milestones that we must face without her. Take the time today to think about how lucky you are that your child is growing and you get to experience firsts with them. You know we would give anything to do that.
"It kills you to see them grow up, but I guess it would kill you quicker if they didn't."- Barbara Kingsolver.
That statement sums up so much for me. I would give anything (I mean ANYTHING) to watch Ava grow up. Her childhood was stolen from me. There is no first day of kindergarten or learning how to ride a bike. She won't get to drive a car or go on a date. There is no walking her down the aisle or watching her become a mother.
I used to be that parent that got a little heartbroken as their child grew. As we continue on without Ava I see now just how lucky parents are that get to experience each milestone with their child. Do you really wish your child would stop growing? Think about that for a minute...
Ava stopped growing and she will always be five years old. No longer here on earth with us but in heaven.
Cherish each new phase with your child and don't be sad to watch them grow. Think about just how fortunate you are to have them with you.
Ava loved birthdays. Her social calendar seemed to be filled with lots of parties and she learned fast that birthdays meant presents and cake. She loved being the "special helper" and give her friends all their presents to open. She was always so interested in what they got and how neat their new toys were. I think her favorite part of the party was watching them open her gift. Her face would light up as they opened it and she would tell them all about their present. When her friends would have a birthday she was always very specific in what to give them and she could not be talked out of what she had set her mind on for their gift. I enjoyed watching her pick gifts for others! It was fun to see what she would choose.
Now if she loved other people's birthdays so much imagnie how she felt about her own! I think her favorite birthday was last year when she turned 5. We had been in Arizona for a few months and it just so happened that her break from treatment would fall on her birthday. We came back home to Texas and threw her a huge, and I mean HUGE party!! It was the first time we could invite everyone she knew and she was the star that day.
My favorite birthday was much more low key. Ava was turning 3 and I was pregnant with her sister (they had the same due date!). We started to think about what to do for her birthday. My due date was a week before her actual birthday and we didn't want to deal with the stress of a party during an unpredictable time. It turned out Myla was born exactly one week before Ava's birthday so just the four of us celebrated with her. We took her to a restaurant (her pick) and let her order anything on the desert menu. She got a "loaded" cookie. It must have been the size of her head and covered in ice cream and chocolate sauce. The look on her face was priceless!! She was so happy to get such a yummy treat all to herself.
I look back on these memories with happiness but I am so sad that we don't get to celebrate anymore birthdays with Ava. Today she would of been six years old. We are planning to have crab (one of her favorites) and cake, something we would do if she was here. Also, at sunset we will be releasing paper lanterns just like they do in Tangled. We think she would of liked that and I hope she can see them in heaven.
Not being able to celebrate Ava's birthday with her is very difficult. It has completely changed my view on birthdays. I used to get a little sad that my *babies* were growing older with each birthday but now it really is a celebration. I know how fleeting life can be. I never would of thought Ava would only get to have 5 birthdays here on earth. I can only imagine the party she is having in heaven today.
Not being able to celebrate Ava's birthday with her is very difficult. It has completely changed my view on birthdays. I used to get a little sad that my *babies* were growing older with each birthday but now it really is a celebration. I know how fleeting life can be. I never would of thought Ava would only get to have 5 birthdays here on earth. I can only imagine the party she is having in heaven today.
So hard to believe it has been two months since I last held Ava. Her death is much more real to me now than it was right after she passed. Someone told me that our hearts only let us take in what we can handle and each day I've been able to take in more. I'm still distracting myself as best I can but she is never far from my mind and my heart.
Everything is still so hard. I break down when I see her pictures or when Myla says how much she misses her (which she tells me at least five times a day). Our home is now quiet when it was filled with Ava's laughter. I think that is the worst. Her giggle was so sweet and loud! I miss it and her so very much.
We have noticed signs she is sending us that she is still with us. It brings comfort right now that we desperately need. I had the most wonderful dream about her on Christmas. She was in heaven with long flowing hair surrounded by light. She told me she was okay and that she loved me. Then she told me I was the best mommy in the whole wide world! It was so sweet to hear that from her again.
And because I know you miss her smile too, here is a picture of her with her daddy.
Ava loved Disney World so much! Such a fun, magical place where she could be a princess, go on rides and meet her favorite characters. Since her make a wish trip in March she kept saying how she wanted to go back. Thanks to Wish Upon a Hero and her hospice team, we were able to take her.
Ava wasn't feel well during this trip. It was the beginning of her little body starting to shut down. We didn't know that and looking back it makes sense how tired she was and how she hardly ate. She didn't want to go on rides like last time but she did love meeting all the princesses. We got to have lunch at Cinderella's castle and I think that was the highlight of her trip. They announced each princess and Ava's face was so full of excitement!
We also got a chance to meet the singer LeAnn Rimes. She works with Wish Upon a Hero and helped us wish Ava's wish. They colored a picture and Ava sang to her! It was great!
We are very happy to have had the chance to take this trip with Ava. It was a wonderful way to spend her last days with us.
I have wanted to write since Ava's passing but I couldn't find the words. Many of you have asked how our family is doing. Our hearts hurt. They don't hurt every minute of the day but the pain lingers and rises when we don't expect it to.
Discovering a present Ava hid under her bed, doing laundry and finding her last bit of dirty clothes and looking at her photos all have caused me to cry and face the loss we all feel without her.
Her funeral was beautiful. We found the prettiest pink coffin for her and she was buried with all of her favorite stuffed animals. She was dressed in all white and her head was adorned with her prettiest princess crown.
Her daddy gave the euology. He said, ..."Ava lived her life for every moment and taught us to do the same. To enjoy the cuddles and quiet times just as much as the laughs and silly moments. Ava will be forever missed but never forgotten. Her shining light is now a part of everyone who knew her and we will always treasure that in our hearts." That is just what we will do.
 |
| Photos coursety of Morgan Kervin Photorgraphy |
I love pictures. I love to take them and to edit them and share them. There is something about a gorgeous photo that stops me in my tracks. A really beautiful photo has the ability to transport you and your emotions. I don't think I understand that more than I do now.
I look back at photos of Ava and I want to cry and laugh at the same time. Cry because most of them were taken at a time of pure innocence. No tumor in her brain. No threat of her leaving us. Just a happy, healthy child growing and playing.
Photos now mean something else. They aren't to capture how she is growing or what she looked like when she was five. They are to capture her in case she has to leave us. They are so we can remember every detail of her smile and every light in her eyes. Someday photographs may be all we have left.
Every single photo that has been taken of Ava over these last ten months has meant the world to me. Our family has been lucky enough to have some wonderful photographers capture Ava's spirit in ways we will treasure forever.
Some families going through this same situation need help in connecting with photographers that can give them the greatest gift, memories of their fighters. That is why I'm sharing The Gold Hope Project. Their mission is bring awareness to childhood cancer through photography and along the way families get those precious memories that will last a lifetime. If you know of a photographer or fighter that would like to apply to be a part of the project, please share it with them!
Ava's glitter photo shoot was the first one from the project and we are honored she is the ambassador for TGHP. Please spread the word about this wonderful charity that means so much to us!
To see all of Ava's glitter photos, click here.
Ava's glitter photo shoot was the first one from the project and we are honored she is the ambassador for TGHP. Please spread the word about this wonderful charity that means so much to us!
To see all of Ava's glitter photos, click here.
Last fall Ava and I had so much fun back to school shopping. She was starting to form an opinion on what clothes she liked (dresses) and what she didn't (anything that was not a dress). I took her to the mall and we went to one of our favorite stores. She walked in and started thumbing through the rows of clothes, pulling out all the pretty sweater dresses and matching leggings. After my hands were full of potential new outfits, we proceeded to the fitting room. This was a new experience for both Ava and myself. Up until a certain age, you can buy your child's size and not worry about how it will fit but Ava was not at that stage anymore. She had to try her clothes on, just like me! She tried on numerous dresses, commenting how pretty they were. I let her pick her favorites because its no fun to wear clothes you don't like and we left the store. I remember this shopping trip so well because it was the first time Ava and I really shopped together. It was such a fun day and I loved experiencing it with her.
 |
| Ava and her favorite dress from our trip. She would wear this red dress so much and always asked for me to wash it if it was dirty! |
Fast forward to this fall. The weather has started to cool off a tad and it made me think how Ava has no clothes for fall. She's outgrown most of her things, thanks to the extra weight gain from the steroids, and I knew it would be time to buy her some new clothes. Only this time I wasn't excited about it and neither was she. She told me to go without her and I was really bummed she didn't want to shop with me like last year. I proceeded to the same store and as I was picking out dresses, I got sad...very sad. Would she like the dresses I was picking? Would she gain more weight and then not fit into them like her summer clothes?
And then, the worst thought of all...would Ava be here a few months from now to wear these clothes? Each month my anxiety grows. When doctors tell you that your child is going to die within 9-12 months and it has been 10 months since that conversation, you wonder everyday if they will be here tomorrow or next week or next month. If your time might be up with them. I don't want to think about life without Ava but I do. Those thoughts are there and they don't go away. I can push them down, but then they come back up.
I still have hope for Ava and everyday she blesses us with her smiles and laughs. She continues to show no symptoms from her brain stem tumor but we don't know what the other tumors are doing right now (hopefully shrinking). Each day brings me joy and fear but ending the day with Ava in my arms is so comforting. I can only pray to end many, many more days like that.
*If you want blog updates delivered to your inbox, be sure to sign up at the bottom of the blog under "follow by email" or "like" Ava's facebook page.*
*If you want blog updates delivered to your inbox, be sure to sign up at the bottom of the blog under "follow by email" or "like" Ava's facebook page.*
We are holding a Be The Match bone marrow registry event in Killeen next week. If you have been wanting to register and are local, now is your chance!
Ava is not in need of marrow, but many other people are and haven't found their match yet on the donor list. You could help a family like ours and a child like Ava!
If you would like to register and can't attend, please visit their website. A kit can be mailed to you. A few swipes inside your cheek and you can be put on the list.
Hope to see a lot of you there!
 |
It's finally cooling off here in Texas so we are able to enjoy our backyard again. Ava has always loved chalk and she got a huge laugh out of this chalk that looks like dessert. It was so nice to see her outside playing!
Overall she is doing great. She is trying to walk and can crawl again. We are planning a mini trip to an indoor waterpark next month. That was one place she wanted to go all summer but we weren't able to take her for various reasons. I know we will all enjoy a weekend of playing and splashing!
She finished her 10 days of radiation last week and one cycle of temodar. She handled it very well so we will discuss her starting another chemo cycle with her doctor. We will probably get a MRI in October to check the status of the tumors. Prayers that they shrink so she can move more freely!
I know I've said this before but we couldn't get through this without your help so I just wanted to thank you all for following us during this journey. It's not a path we would have picked but it makes it just a little bit easier knowing you are there for us. Thank you.
*If you want blog
updates delivered to your inbox, be sure to sign up at the bottom of the
blog under "follow by email" or "like" Ava's facebook page.*
Overall she is doing great. She is trying to walk and can crawl again. We are planning a mini trip to an indoor waterpark next month. That was one place she wanted to go all summer but we weren't able to take her for various reasons. I know we will all enjoy a weekend of playing and splashing!
She finished her 10 days of radiation last week and one cycle of temodar. She handled it very well so we will discuss her starting another chemo cycle with her doctor. We will probably get a MRI in October to check the status of the tumors. Prayers that they shrink so she can move more freely!
I know I've said this before but we couldn't get through this without your help so I just wanted to thank you all for following us during this journey. It's not a path we would have picked but it makes it just a little bit easier knowing you are there for us. Thank you.
It's September. Fall is coming, kids are back in school and for us in Texas hopefully some cooler weather but it's also Childhood Cancer Awareness month. I will admit that before Ava's diagnosis I didn't even know there was a gold ribbon. But I do now and we need to spread the word!
Cancer in children acts much different than cancers in adults but kids are treated like a smaller version of their grown up counterparts. Why? Because there is not enough research and very few drugs that were formulated specifically for children. This gives them poorer outcomes and more lifelong side effects.
Childhood Cancer can not be prevented and it's a mystery why some kids get cancer and others don't. Everyday, 36 US children and families are thrust into this world and 7 children die from cancer. It isn't as rare as you might think. In fact it is the 2nd killer of children. Car accidents are number one.
What can you do?
Each of you reading this has the potential to help children like Ava.
- Share- Share this blog post, pictures, awareness posters, facts, etc.
- Inform yourself and others- Know the facts and where money for research goes. For example, the National Cancer Institute's federal budget last year was 4.6 billion dollars but only 3% of that budget went to fund research on ALL 12 major types of pediatric cancer. This leaves it up to private donors and non profits to pick up the slack. Do you think that's okay? I sure don't!
- Organize- Organize a charity walk, lemonade stand, bake sale or pay a $1 to wear pjs to work or school this month all in honor of a pediatric cancer organization (I've listed my favorites at the bottom).
- Act- Sign the petition at The Truth 365 to increase federal funding for childhood cancer. Register to be a bone marrow donor at Be the Match. I recently did this and it would be such a blessing to help cure a child of cancer!
I'm urging you to find something you can do
this month to help the gold ribbon
become as well known as the pink or red.
Our children need us!
These organizations are funding ground breaking pediatric research or are close to my heart. They each have ideas on their website how you can help spread the word and support children like Ava.
The Cure Starts Now- founded in memory of Elena who had DIPG. They focus on pediatric brain cancer research.
Jessie Rees Foundation- Founded by Jessie. A DIPG angel whose motto of Never Ever Give Up is being spread by Joy Jars, special gifts to pediatric cancer patients.
People Against Childhood Cancer- They are on an awareness campaign. It was eye opening to see their graph showing how The American Cancer Society spends their donations. 1 penny for every dollar goes toward pediatric cancer research.
St. Baldricks Foundation- A challenge between friends to shave their heads and raise money for children's cancer started this foundation that raises more money for children than any other organization.
Alex's Lemonade Stand Foundation- Founded by Alex, a little girl with neroblastoma, they are on a mission to cure all childhood cancers.
Alex's Lemonade Stand Foundation- Founded by Alex, a little girl with neroblastoma, they are on a mission to cure all childhood cancers.
Rally for a Cure- They are raising awareness and funds for cancer research and better treatments for pediatric cancer.
We got Ava's latest MRI results today.
We knew we were going to be told that Ava's lesions on her spine have grown because of her inability to walk. Unfortunately, they have grown and spread. When they were first discovered they ranged from the T2-T8 vertebrae. Now they go from T1-T8 and there is a cluster on her L2 all the way down to her coccyx. These are clustered around a lot of her nerve endings and we think this may be causing some the pain she has been complaining about.
The gliobastoma on her dura has also grown back by about 10-15%. Her brain stem glioma is stable (one piece of very good news).
 |
| Here is the very large mass in Ava's spine. |
We have come to a point where we understand that none of this is curable but we said in the beginning that we will fight and we aren't giving up now. Ava will have an aggressive course of radiation to her spine and part of her brain (she has received her lifetime dose to the pons area) along with two different types of chemo. The hope is that it will improve her quality of life and function will return to her legs. There is no guarantee that she will be able to walk again but we are hopeful this will help.
This is very hard for us. Ava is such a beautiful child. She is always laughing and smiling. I hate that her childhood is being taken away. There is no back to school for her. No excitement for the upcoming year filled with after school activities, new friends and learning to be independent. She gets to go back to radiation instead. She has to rely on us for everything. If she wants to go somewhere in the house, someone has to carry her there. We have to take her to the bathroom and even pull her pants up and down. Seeing her go from being so active to not being able to do things on her own is just so sad.
Please pray that radiation and chemo does help her gain function in her legs so she has more time to enjoy being a carefree child.
"I wish I was childless."
A stranger said those words to me while her own children were obviously getting on her nerves. I keep hearing her say that over and over. Would she feel the same way if one of her children was fighting for their life, battling a disease that kills innocent children?
It seems heartless because I'm sure she wouldn't and was just having a stressful moment. As parents, we all have those moments and its hard to know who your audience is when saying certain things. You can't tell by looking at me what my daughter is going through.
But those words are still ringing in my ear. Please be careful what you say. Yes kids can and will drive you crazy at times but would you really rather be childless or (insert your stress reliever crazy saying here)?
I know parents who have lost their precious babies would give anything to get those crazy moments back. Cherish them...the good and the crazy. They don't last forever.
I hate writing this but lately I've been scared. Here it is August already and today starts Ava's 8th month living with DIPG.
When I think back to that day her tumor was found so much of it is a blur and some parts are so clear. Like sitting in the doctor's office and the words "It's a tumor" coming out of his month. I was in complete shock and it was so hard to repeat those words. Now it is much easier to say it but we still struggle with the fact it is there.
After Ava's biopsy we were told we had 9-12 months of time with her. Every month that passes we get closer to that time and I can slowly see her starting to struggle. Kids with DIPG lose their ability to walk first, then talk, then eat and finally breathe. Ava is having a hard time walking. She had been doing it so much more since we got back home but these last few days have been very tough. We have to order a special wheelchair and when the day comes that she has to use it will be very sad for us.
One good thing is Ava isn't scared. She isn't letting this bother her and she keeps pushing forward. I admire her courage and fight so much! I learn everyday just how amazing she is and we are so blessed even given our circumstances.
If you like to make a donation to the Dawson family, click here.
If you like to make a donation to the Dawson family, click here.
 |
| Just wanted to share this photo of Ava and Myla having a tickle fight. They have the most fun together! |
Wow, it has been two weeks since I updated the blog. We have been so busy packing up our apartment in Arizona, driving to Texas and unpacking here the time has gone so fast!
Ava has been doing wonderfully. Since we got home she is determined to move and play! This makes us so happy since a few weeks ago she was basically paralyzed and could not walk. She now is able to move around the house holding onto walls and the furniture. She loves playing with her barbie dream house and all the other toys that we couldn't take with us to Arizona. Myla and her have been having so much fun discovering all their toys again.
We are so thankful for everyday we have together as a family and I want to thank each of you who has made this transition easier for us. We are so blessed to have you helping us right now!
 |
| Ava spends her day playing with her dolls, coloring and she loves computer games! |
This week has been a blessing! Ava has been in the best mood and we can tell nothing is slowing her down, not even the fact that she can't walk. She has been non-stop giggles and belly laughing. I must say we are enjoying those sounds very much!
We are gearing up to get back to Texas next week and it is very bittersweet. We will be so happy to be home but at the same time have grown to love living in Arizona with our family and the few great friends we have met here.
We have felt so much love and support from all of you. From the many messages on Facebook and the auction to a bake sale all in Ava's honor. We are very humbled by the way everyone has come together to help our family. Thank you!!
I have been struggling to write something since Friday focusing on how we are doing with this news but I find it too difficult. I'm not optimistic right now and I keep erasing everything because it is so depressing to say how I'm feeling.
We are trying to be strong for Ava but we are breaking down. I feel like it's not fair that she has to go through this, that our family has to to go through this and that we aren't the first family to face DIPG and we won't be the last.
I never hated cancer so much as I do right now when it is threatening to take my child away. It's like being tortured knowing that someday your child might die and not just pass peacefully but struggle to breathe, to eat, to move and be fully aware of what is happening to their body. I don't know why any parent has to lose a child in any kind of situation.
This is becoming more real to me these last couple of days since Ava is having a real difficult time walking and the look in her eyes is pure sadness and frustration. She can't stand up straight and is complaining of pain in her legs.
This is becoming more real to me these last couple of days since Ava is having a real difficult time walking and the look in her eyes is pure sadness and frustration. She can't stand up straight and is complaining of pain in her legs.
My heart is breaking and we pray for time with our sweet girl.
If you would like to make a donation to the Dawson family, click here.
If you would like to make a donation to the Dawson family, click here.
We got the official word today that we are out of the clinical trial here in Phoenix because the tumor has progressed.
The lesions to her spine are from the PONS and the other tumor as well. Her doctor thinks that some of the tumor broke away from the pons to the spine and then got pushed back to the brain, planting itself on her dura.
We have to decide how to treat the spread if at all possible. Radiation to her spine will be the most likely treatment. We haven't decided if we want to do another trial for progression or treat the spine with chemotherapy yet.
We do know that we will be going home to Texas in about a month or so. It will be bittersweet to leave here and all the wonderful people at Phoenix Children's Hospital who have been so kind to us and Ava. We will definitely miss my grandparents, uncle, aunt, cousins and brother who have helped us so much here. They are one of the reasons we picked this trial and I know Ava has loved being around her family.
We'll update once we find out more but once again thank you so much for all your prayers and support!
If you would like to make a donation to the Dawson Family, click here.
If you would like to make a donation to the Dawson Family, click here.
2 Comments