When Brothers Step up to be Sisters when they are needed the most

One in five children who have Cancer will not survive.

 ONE in FIVE children who HAVE CANCER will NOT SURVIVE.

 That's the potent line in a St. Judes commercial depicting children fighting the fight of their life. The parents are interviewed and are heard saying that the feeling of not knowing if your child will survive is terrible. The first child who is interviewed has leukemia. She looks very sick. She is fighting so hard to survive - I sincerely hope that she does. I can't get through these commercials without crying. They don't make me mad like the happy commercials - they make me so sad. I know, it's a not very positive or optimistic of me to critique every one of these commercials. But here's the thing- I have been on every side of that. I didn't used to be a cancer mom. I would pause and reflect on how thankful I was that my kids didn't have to face such devastation...and then I would carry on with my day 30 seconds later when the commercial ended. But I then became a cancer mom in an instant when the doctor took me into a room with two other doctors whom I never met, sat me down while holding my hand and told me "I'm so sorry to tell you, but Bryanna has cancer. She has Leukemia." I  know what it feels like to be told the next day that she has AML which has a 80 percent survival rate. I remember Mike saying...but that's horrible. That means 2 out of 10 children will die. What do we have to do to make sure that's not Bryanna? Then we found out they were wrong, it was T-Cell ALL...which was even better...90% survival rate...then they realized it was so much more serious...after over a week of lab research from the brightest minds at childrens National and St. Judes they found it was ETP-ALL. This carried a 30% survival rate. That's 7 out of 10 children will not survive. That means only 3 out of 10 children will. When they do survive, they are not free of worry or illness, more often than not, they have secondary cancer caused by the treatment they were getting to battle the first cancer. Often times they cannot bear children and have many different struggles as they carry on with their daily life. If they survive.
One in Five children will not survive cancer. Bryanna was that ONE. Bryanna had less than a 30% chance of survival because she not only had one of the toughest forms of leukemia, but she had a mutated gene on top of that. One that to date does not have much research due to how rare it was. Four out of Five children WILL survive. For those kids, I am so very thankful that you have been given the strength to fight. I am so thankful that you were able to beat this awful disease and I pray that you continue to stay strong.

For the past couple of days, I have been dealing with a brutal cold....body aches, congestion, exacerbated asthma...you know...the whole gamut. Yet, all I can think about is when I felt my worst, I know that it never ever came close to what Bryanna was feeling on her good days. She fought so hard to get through each day with the most excruciating pain. Pain that opioids couldn't take away.  Nothing about cancer is good. It causes so much pain and suffering to so many people. I can't wait for the day that the commercial says Five out of Five children WILL SURVIVE Cancer. I just wish Bryanna had also been one of the survivors that could share her story.

As we sit at dinner and Evey tells us some of the struggles she has had at school...I watch both Evey and Liam. I watch how they interact with each other during these difficulties and I think back to when we had similar conversations with Bryanna at the table. Evey used to listen so intently at Bryanna's struggles and then try to give her advice...and comfort.  As Liam so wisely and calmly told Evey to "Calm down and take a deep breath. In through your nose and out through your mouth", as he demonstrated ever so calmly, and touched her arm to get her to calmly focus, I couldn't help be so incredibly proud of the little people my kids have developed into. As I struggle with this cold (which after everything my kids have gone through, I have no place to complain), I have lost my voice. This is surely a win for the world...and I thought for the kids. Yet, rather than taking advantage of that, they were so helpful and so concerned. Evey wanted to be my voice - she even called from the other room this morning when I was talking to Liam..."I told you not to use your voice. You have to rest it mom! Stop talking!". Then when she got home she asked if I spoke today and when I said I did a little...she told me in a very serious tone "I'm really disappointed with you. You have to take care of your voice so you can get better." Liam them follows with..."ya mom...so disappointed". The amount of heart, caring and love that these kids have to take care of me, when it's my job to take care of them, even if it is to tell me to stop yapping to protect my voice, it's just wise beyond their years and makes my heart sing (as Bryanna used to say). It touches me so deeply. How did I get so lucky to have kids that have weathered a few of the worst storms imaginable...and yet they still carry on. Today marks 2 years that we had that apartment fire. It marks two years since Levi alerted me to the fire and I had to make a split decision on how we got out of our home. It marks two years that we lost all of our furniture, our pictures, toys, clothes, underwear, shoes, kids artwork and pretty much everything. It marks two years that I lost all of Bryanna's things she had for the first 7 years of her life. All the things that I would have loved to have had to look at today. Yet here we are...focusing on the now, the tomorrow. Focusing on taking care of each other...focusing on our team...not our trauma.


I think back about the funny things of parenting - of the things you just look back and say...wait what?! It's these moments that really make me smile. Like the time when Liam was doing his thing, and Bryanna and Evey were tired and cranky after a long day at school and were fighting. I'm talking about an all out screaming, yelling, crying, not even rational type of fighting. Meanwhile, I'm trying to get dinner together while doing the dishes. A person can only take so much of that fighting before imagining locking themselves in a bathroom with a big bag of chocolate, 20 packs of oreos and gallon of milk. I'm not even talking about taking the time to bring a cup to dunk the oreos in. No, when you are at your wits ends, you just want to breathe and you will drink out of that jug of milk, after all you're taking one for the team...well, you are being one away from the team, so you tell yourself you are taking one for the team in that moment. Then you snap back to reality and you realize if you don't intervene in this escalating fight between two little girls, then world war three will break out resulting in lots more tears...and well, you already ate the chocolate and oreos so you can't offer that so you better make it right quick. So,  naturally, I jump in after hearing Bryanna and Evey yell that they aren't sharing their unicorns. I like to be fair of course, so I say...at my wits end of course (mind you, liam is crashing his cars, dinner's cooking, the sink of dishes are still screaming at me and I am dreaming of a quite bathroom with my 20 packs of oreos and a gallon of milk)..."you use the unicorn first and then you share it with you sister who will use it after. If you guys have a problem with that, NO ONE WILL GET TO USE THE UNICORN!" Well, that sure got their attention. I guess it made sense, because the fighting stopped. I felt quite accomplished and got back to my dinner making and dish cleaning activities feeling like I was a master at this parenting thing. Then it hit me. This was not a toy they were talking about. This was not a stuffed animal. This was not a drawing. Bryanna and Evey were fighting over an IMAGINARY unicorn. Let that really sink in for a second.  The least I could have done was given each girl their own unicorn at that point. Not sure who won, the girls or their imaginary unicorn. I was back to dreaming of my 20 packs of oreos and my gallon of milk...but the unicorn flew away with it.

I miss those silly stupid parenting moments that having three kids brought. There is a lot less chaos these days. I'm sure Evey and Liam will build up to it, and I'm sure they are waiting to unleash the mayhem...but I sure miss the girl fights. The fights about Evey not letting Bryanna sleep because she had the power to keep her awake by talking, the fights about Bryanna not letting Evey know where she kept her most important things...you know...the sisterly fights. Fights about who gets to ride the unicorns first.  Instead of sisterly rivalry, Evey now gets sad when she sees the Disney junior commercials with sisters singing the "sister sister" song from Elena of Avelor. But Liam steps right up to let her know that he is 'happy to be her sister'. We will figure things out. Yes, we are the family that had that One in Five children...but we will fight our own fight to make sure we get through this, even if we have to share our one unicorn along the way and brothers have to be sisters, even for a little bit.

Bryanna, Evey and Liam always hung out together and always had each other's back. Who would have ever have thought that Bryanna would die from cancer, Evey would be sad that she "no longer has a sister here" and Liam would tell her "I'll be your sister". 

Four out of Five children have to pick up the pieces and figure out how they now fit into their new family dynamics. One of Five children don't get a say anymore. 

Magic and the assurance that she still matters - that we all matter

The last few days have been rough because Liam has been feeling under the weather. His asthma has been flared up and he has an ear infection - a perfect recipe for sleepless nights and lots of snuggles, crankiness and lots of patience. He was feeling so miserable on Friday (the last day of his first week at big boy camp), that I had to go pick him up while they were out of town on a field trip - the field trip that he was looking forward to the most. He wasn't excited, he wasn't playing and running, he was just sitting with his counselor waiting for me to come and pick him up, waiting for the comfort of my hugs and snuggles. These are the moments that as a parent, I think...geeze...why did I send him? I knew he hadn't been feeling great the night before - for crying out loud he had been up all night miserable. But by morning he was playing and flying his plane of blocks. He was excited to go to camp. Only to find out he really was pretty sick. Epic fail.
It was hard to see him feel so sick. He fell asleep when we got home and most of the day on saturday. He was feeling so sick that he slept with his mouth open - like bryanna did when she was sick in the hospital. It was not a happy feeling to see him feel that way - even though I know he doesn't have cancer and I know it is completely different.

Bryanna and her new favorite yellow Easter egg - Easter Sunday 2016

The easter bunny came to our house over the weekend as well as nana and papa's house. Since Liam was feeling so icky, we decided to skip the Easter egg hunt on Sat. and had a mini one throughout the house here on Sunday. They were so amazed that the Easter Bunny left them little hidden treats...even in their shoes. It's amazing how far a little magic can go. But it was hard. The Easter Bunny's helper (aka me) only bought 2 baskets this year. Only 2, not 3.  We only got 2 books, 2 tooth brushes, 2 chocolate bunnies and 2 of everything else that went in the baskets. Two not Three. As I was buying these things, I noticed quite a few people looking at me through the hustle and bustle of the store - I wonder if I had that look on my face that I felt inside. It's such a conflicting feeling. It's such a sad, lonely and devastating feeling mixed with the need to make magic for Evey and Liam so they can feel happy and hopeful. They need to see that there is still magic in the world and that we can still have happiness as we take each day as they come. Easter is another holiday that we had to get through without Bryanna. I can't say that I wish we didn't have holidays because it is a stark reminder of this huge void in our hearts because we still need these holidays to have a reason to celebrate on the days that we just can't find that motivation to celebrate. It's important for us to have these so the kids see that they still matter. But the thing is, it's not just holidays that we struggle with - yes, I have heard from many people that the holidays are hardest when you lose someone you love. But to be honest, the every day mundane tasks, the everyday schedules, the everyday meals, the everyday bedtime routines, the everyday story time (and guest spots - we always would make a 'guest spot' complete with a pillow for the others who would be on the bed we were reading and we rotated each night)...even shopping for food, for tooth brushes, for hair accessories...you feel the overwhelming loss. Bryanna was my girly girl, my let's accessorize, lets paint our nails and wear dresses and pretty shoes type of girl. I look at the end caps with the different colors of nail polish, the advertisement for cute clothes or shoes, the isle at the grocery store with her favorite cheeses or foods...every day is hard. I'm not sure that it's really harder or not. I haven't figured that out. Is there really a way to quantify pain like this? Is there really a way to tell someone that is truly is harder on a certain day than not? I don't know. I'm sure her birthday will be excruciatingly hard...but we are not there yet. That is a battle for another day.

Tonight during bedtime, the kids wanted to know details about Bryanna's last days. They wanted to know if she talked, if her mouth hurt, if her eyes hurt. They wanted to know what it felt like to have the type of sickness that she had. They wanted to know if how they feel when they are sick is how she felt. The answer was no.  There is a fine line between telling them these miserable details and not scaring them - giving them what they want to know without giving them much of the devastating picture. At least not now when it is so hard for them to understand. What I told them was that Yes, Bryanna was in a lot of pain, but the doctors and nurses gave her lots of medicine so she didn't feel her pain. No, Bryanna didn't talk or move because she felt so sick that it made her really sleepy. Yes, she missed you guys so much. Yes, she fought so hard but she had no control over what would happen.  The real picture (and what I did not say because they couldn't handle this): The last 2 weeks, Bryanna was intubated. She was sedated so that her organs, which had all failed, could heal. She was sedated so that she didn't feel the extraordinary and excruciating pain that her body was plaguing her with. Pain that would make a grown man go insane. Bryanna's body was failing so fast, she had gained 34 pounds due to the extraordinary efforts to resuscitate her after going into cardiac arrest. Yes - I sat next to her bed with her primary oncologist and fellow as she went into full cardiac arrest. I saw them disconnect the ventilator and physically push air through the bag by squeezing it as they do on tv. I saw them literally hold her life in her hands. I saw them pushing so much fluid and medicine directly through her port to get it into her body as fast as they can. I saw the doctor stand on a stool and do CPR and a doctor behind her waiting to take over. I saw Bryanna be pushed into the bed with each compression as the bed was deflated so that CPR was effective.  I heard the doctor count the seconds until they reached 1 minute and 59 seconds and both doctor's hands were on her so they could seamlessly switch. I saw the main coordinating doctor get control over the room when all the people in there started to panic and yell. I saw her calm them down and center everyone before they continued to save Bryanna's life. I saw her heart rate on the monitor fall to 0. I saw her oxygen go to 0. I saw the flat lines and heard the alarms. Then they brought her back to life. I saw Bryanna die and live again. But though she fought so hard, she was too sick to be her old self. I could not tell the kids that Bryanna was hemorrhaging so badly the last week due to the anticoagulants that allowed her to be on ECMO which was the only thing saving her life, that she was bleeding from her eyes, from her nose, and from her mouth. I couldn't tell them that the last time she spoke to me was when she asked me...no begged me to not let them put the tube down her throat again. This was only days before she went into cardiac arrest. Yes, I believe she heard us, I believe she responded to us by squeezing our hands and moving her arms and blinking. I believe that each of those actions were painfully hard for her but she did.  I did not tell them that she was in so much pain that any time they had to move her she would wince...even though she wasn't fully conscious. I did not tell them that I saw her feet becoming discolored the morning we decided to let her go. I did not tell them that I panicked and asked them to stop clamping the ECMO tubes as I lay next to her and Mike held her hand. I did not tell them that I felt her heart stop beating and I saw the color leave her body. I did not tell them that yes, we did have to go and 'identify her body' at the funeral home and that I stood there crying and telling her how very sorry I was that I couldn't make her better. Evey desperately wants to see her body. She doesn't understand where it could be because it wouldn't fit in that little box that her her cremated remains. We have been very delicate about the cremation. Fire scares her so much, especially after our apt. fire almost 2 years ago. The one things we told them is that we got everyone out and the fire didn't hurt us. It is not in the cards to then tell Evey the details of what cremation is...putting a body into fire. It is something I struggle with deeply as well.  But we have explained that the beautiful spirit of Bryanna is in that box and is snuggled close to her blanket and her puppy.
I cannot imagine Evey or Liam seeing Bryanna at any point since the last time we had a movie night at the hospital. It is something that would haunt them forever. I am grateful that the memories they did have was movie and popcorn, when Bryanna could tolerate the smell. But this doesn't make it better for them. I understand that. Not much will.
Evey wants 2 jars. One jar that all the germs can go into and Bryanna could have gotten better. Another jar that we can walk into and she can wish to have anything change in life that she wants. The only thing she wants is Bryanna to come back...and a unicorn. We talked about how we can't change what has happened in life, but we can change how our life is. We have the power of choice. We can choose to have a good day or a bad day. Though it may not always be easy. So, when we are struggly without Bryanna - we are going to choose to think of a fun memory with Bryanna. Maybe, just maybe it will help us get through the unbearable.

After putting Liam to bed many times, he finally came out to the living room one last time. He said that when Evey is asleep, he feels so alone. He misses Bryanna. He asked if he could have a hug and kiss because it makes him feel better. Kiddo - I will give you as many hugs and kisses that I can possibly give you if that will  make things better. Always.

We all know it is tax time - and though we are procrastinators, this year has been a lot harder. Yes, we started them last night and are still working on them. They will be completed by the deadline, but it's hard. Adding this one last pressure to our day seems too crushing at times. We knew that we would have to go through all of our expenses during the hospital stays. We would have to tally everything up and relive those days through out receipts and bank accounts. We got through that. It's easy to put up a wall. But, as we start our taxes and we have to list that Bryanna, our 9 year old girl, passed away on October 24, 2016 - that was awful. It took a long time to get through the few questions they asked. It is devastating. We are also working with the Maryland Health Exchange - who has been really helpful and nice as well as compassionate through the process of removing her from our insurance. However, in order to get a refund on the months that we paid for her since she passed, we have to phycially show proof of her death. We have to physically take her death certificate into an office and show a rep. I understand all of this is so necessary. But it's not a birth certificate, a marriage certificate, a business license or anything happy. It is further proof that our baby girl has died. It is further proof that we need to hold on to these memories, the pictures and breathe. It is further proof that this is reality.

We could all use a hug...it makes us feel better...whatever better is.

Turbo Tax extending their condolences for our loss. 

Turbo Tax assuring us that she still matters.

Eater Sunday 2016 - The pure joy that the Easter bunny gave - pure magic

Another Day and a New Tomorrow

When you see that positive pregnancy test and hear congratulations for your pregnancy from the doctor - you are filled with dreams, hopes, worry and this sudden surprising overwhelming love. You scourer the Internet to learn every little minute detail that is happening to your body - and more excitingly, what is happening to your baby's body. You get excited and yell out that your little love is  now the size of a rice grain, a pea, a mango, a cantaloupe, a watermelon. You learn when they have their fully formed fingers and toes complete with nails, you learn when their eyes are forming and their lungs are forming. You do everything in your power to eat healthy, follow the doctor's orders and keep this little bambino growing inside of you for as long as you possibly can. When you are having your second and third child, it is all so exciting, except even more exhausting because the older kids still need your love, they still need your hugs, they still want to cause mayhem and they still are walking tornadoes, loving bundles of chaos and so full of love. As a parent, whether you are a mom or dad, you think of every possible scenario of what the child will grow up to be, you start by being so nervous yet so excited to change the delicately small diapers and burp the little baby at just the right firmness that the gas comes out but you don't cause any harm to this delicate and fragile little amazing little human. You never ever think in those days that your child will someday get one of the most catastrophic disease that would cause the most intense and painful suffering - more than any person you know had to experience. You never ever think that your child would get such a devastating disease that is so rare, that not many has heard of it, that only one institution had conducted research on it. A disease so rare, that the effects of a mutated gene is not documented into research until now.

Seeing Bryanna suffer daily and having to take methadone, oxycodone, morphine constantly throughout the day every day - and having to take merinal (synthetic THC), and virtually every other anti-nausea medication just to get through her day in addition to the ever changing chemotherapy protocols of which include weekly IT chemo, is something that I will never forget and that is so devastating and heartbreaking. Let me explain what IT chemo entailed - Bryanna would not be allowed to eat or drink from midnight the  night before the procedure, she would be taken to the OR (she became too unstable to go to the clinic's procedure room on hemonc), she would then lay there, trying to deal with the new faces, the hustle and bustle and the constant touching. She would have to hear the kids crying around her and the people talking. She would be so scared that sometimes she would talk, sometimes she would cry and many times she would completely shut down. The team would then give her sedation while I was holding her hand and talking to her, or singing one of her Katie perry songs. I was often allowed to go back to the OR with her until she was situated and then was escorted to the waiting room. I would hold puppy and animal blanket so tightly as I sat there and stared at everyone around me, not seeing anything or anyone. I would sit by her side until she would wake up and then console her every single time as she felt so sick, she felt more pain and she was scared. This was weekly...sometimes multiple times a week...in addition to the daily chemo treatment and daily/hourly medication.  This was her hell. This was darkness. She knew she was dying, she told me that many times. She told me when everyone left for the night (at least when she had a few hour break from the nurses at night), when the lights were out and when she was scared. She didn't want me to let go of her, she wanted me to hold her hand and sit next to her.  We did just that. Both mike and I sat or laid with her until after she fell asleep or could no longer tolerate being touched, whether emotionally or from the shear pain she felt throughout her body.

Why does such a young, innocent and beautiful little girl have to be given such a miserable and painful fate? How can so many people in the world do horrible things to their body and yet live a full life completely unscathed by cancer while, young kids do everything right with their growing bodies and are dealt with such devastating blows?

Every day, I see where Bryanna should be, or something she would have liked or would have done. Every day I feel the emptiness and the hole where she should be next to me, next to Evey or Liam. Every day, I feel the sadness as Mike comes home and is not greeted by Bryanna's super excited smile and hug. Every day there is a hole.

Yesterday as we went to camp in the morning and as we were driving by the cemetery, Liam randomly (yet not randomly, I'm sure) said "Here's the cemetery. Bryanna is with my teacher at camp every day." It was the simplest and most profound statement that I have ever heard Liam say about Bryanna. I know this is true. Bryanna loved camp almost as much as she loved being home and as much as animals. This was Liam's first time at camp and so I believe she was there looking out for him. It was also a tough time for him because he had to keep up with the bigger kids (he was the youngest in his group) and during the last day dealt with exacerbated asthma and an ear infection (we picked him up from camp early because of this).  I believe that Liam needed Bryanna this week and this was the first time that he has expressed that he felt, that he saw her presence. How would a 4 year old boy who struggles to articulate his speech more times than not say something like this if it weren't true? I believe Bryanna is our guardian angel, there for those who need her the most in that moment.

Evey said a prayer for Bryanna at dinner last night. She couldn't say the entire thing because she started crying too hard. But she reminded me of the power of prayer. She reminded me that we can be heard and maybe we are not alone. It's so easy to get lost in this pain and to try to get through each and every day as if we are all okay, that we are all easily putting the right foot in front of the left, but times like this may me slow down and realize that we need these moments to pray. We need to pray if that is what helps find us hope, what helps us heal and what helps us believe. This morning, Evey and I made Easter egg pancakes with bacon. Liam ate very little as he is still feeling quite icky, but they both were so excited by these colorful pancakes that suddenly had so much happiness and magic in them. Then Evey started rubbing her eyes as she often does and I realized that she wasn't suffering from allergies as she so cleverly tries to say she is, she is sad. She is so sad deep in her soul that she tries to tell everyone that her eyes are watering and she just doesn't know why. She knows why. But talking about this pain, of missing Bryanna, her best friend, only opens the floodgates and makes her feel even more sad. So after a little encouraging, she talked about how empty it felt with Bryanna's chair empty. How sad and lonely it was in this house with out her. How meal time sucks without her, even when we have fun. How she is mad because this isn't fair. So, she decided to offer Bryanna a plate full of some of her bacon and Easter egg pancakes. She made me so proud. As heartbreaking as this is, it takes a lot of strength and courage for a 7 year old to make such a gesture, such an offering to her sister who suffered so much. It was so powerful because Liam just sat and listened (rather than his usual interrupting or trying to talk with her as 4 year old dos) I can't take her pain away. I can't take Liam's pain away, but I can continue to be there with them and for them. I will continue to read stories at bed time, snuggle up for one last show, sing a song in the middle of the night when they are scared. I will continue to allow them to snuggle with me throughout the night when they are too scared or lonely. That feeling of love that I felt the moment I knew I was pregnant is the same I feel now, only intensified.

We as parents have a duty to protect our children. It is our job to nourish, clothe, protect and support. But it is more than a job to love so fiercely and unconditionally. It is a blessing.
I am so grateful that I was chosen to be Bryanna, Evey and Liam's mom. As much as losing Bryanna continues to devastate us, I have to remind myself that I was lucky enough to get 9 years to get to know this beautiful little girl that made me a mommy, to snuggle and be comforted more times than she ever knew. She showed me love in times that she had no idea I needed it the most. She played and made me smile at a park even after I found I had miscarried before Evey. She was my angel even though she never knew it.  It is such a blessing that I felt her love and she showed me and everyone around me what it means to love. I thought I knew what Love was until I had Bryanna. This little girl taught so many people the meaning of life, of living and of love.  I will be forever grateful that I was given that.  Tomorrow is Easter. It is another day and a new tomorrow.  We will need strength and grace to get through the day and we will. We always do. We have to believe that she is with us. We have to believe in Love.

Be You, Be Awesome!

Like many people, after a long day, I like to turn the tv on and relax. After dinner is cleaned up and the kids have been tucked in a hundred times, I like to think that I can sit down and watch a show. Something that I don't have to think about, something that I don't have to be present for. In the end, the show ends up as background noise as I can't quite get into my favorite shows any more. As I was going to shut off the tv, I heard a mom on a popular police show respond to an officer who was paying their respect and said "I'm sorry for your loss". She was surprised. She replied "My loss? Don't be sorry for my loss. A loss implies that you lost something that you will eventually find and get back. I will never find my daughter again."  I completely get that. I will never get to hold Bryanna again. I will never get to ask her what her favorite and least favorite part of her day was. I will never get to have her be my helper while we shopped, or have her tell me I need to accessorize more. I will never get to have our late night ice creams moments that we would have when she couldn't sleep. Those were the moments that her flood gates would open. Those are the moments that she would talk more than normal. Those are the moments that she let me snuggle with her, as much as she could tolerate.

For those of you who don't know, Bryanna had PDD-NOS - which is a highly functioning form of autism. The majority of the world, friends and community did not know. There was no reason for them to know..it didn't change who she was, it just gave us a title to get her the help she needed, the help that we needed to give her the absolute best chance to be the best, most smartest and accomplished person that she could be. We had very high hopes for this little girl who was so smart and loving. This is who Bryanna was. Bryanna struggled socially, she struggled to make friends, struggled to play with them, played like a horse or puppy on the playground rather than tag and hopscotch, struggled with loud noises...and sometimes any noise...hated to be touched and engaged on her terms. Bryanna was very literal, and often times the cutest most simplest of jokes would not resonate with her (I remember sitting in taco bell with the kids cracking joke after joke and I was the only one laughing). Bryanna needed her instructions broken down, she needed many basic explanations of common sense things that the average child her age already got. The movie HOME was a major hit in my house, because they spoke so literally. It was such an awesome feeling. I understood it. I got it. This is who Bryanna was. This is one of the special things about her that made her so uniquely wonderful. That being said, she was so smart, and caring and made it through every single day with a smile, with a laugh and with love. Through everything that was hard for her, she loved. I mean...seriously...this child LOVED. She showed me what love truly meant - the unconditional, unrelenting, non-judgmental, whole hearted love. Bryanna didn't like to sit and snuggle. She didn't hug much, she didn't like her head to be touched. But she would come and sit with me on these nights, when it was just the two of us eating a little container of ice cream, while the entire house slept. It was in these moments that Bryanna would lean in and snuggle. It was in these moments that she shared her deepest thoughts. It was in these moments that I could see her relax. No stress, no noise, no worries. Just a few minutes with ice cream and me. 

Anyone who knows me knows that I am a stickler for routines. I have to be. All three of my kids struggle with transition (though Liam a lot less than Bryanna and Evey). Change is tough for all kids, but for mine...quite a bit more. The word "Common" sense doesn't belong in my dictionary. I have learned by having my amazing kids that there is nothing "common" with the ideas set forth by society, there is nothing common about the minds of young beautiful kids, there is nothing common about being uniquely different and trying to figure out how you fit into this mold called society. Further, this world, this society, these social norms doesn't always make "sense". So really, the word "common sense" is not what I expect to see in my trusty parenting dictionary. 

The thing is, having a child (or children) on the spectrum...highly functioning or not, does not mean what I think many people expect it to mean. It doesn't mean loss of love, it doesn't mean loss of family or loss of happiness. On the contrary, I think it means more love, more family and through the struggles, a lot of happiness. 

For some reason, we can't find a lot of Bryanna's writings. Writing on random pieces of paper, a journal or in a book was how she relaxed, it was how she focused and centered herself. Yet, for some reason, it appears that she hid a lot of it. We keep finding little bits here and there. In one of the papers I found - Bryanna wrote the most surprising thing. She wrote (and I'm paraphrasing here) ' My mind doesn't work like yours. I don't understand what you understand, I don't see things the same way that you do..'.  This paper was connected to a handful of other pages where she wrote one word many many times such as notebook, pencil, dog...and so on. She was playing school and in this little nugget of writing, she was telling us that she did get it. But see, I could see how maybe some might question if we did her a disservice or maybe even an injustice for not telling her...the thing is, she seemed perfectly content and happy. She was trying to find herself, that I'm sure, but what she wrote told us that she was confident with who she was, that she was okay that her mind worked differently, that this is simply who she is.  See, I think we as a society underestimate the human mind and the human heart.  Yes, she and Evey call people 'humans' instead of 'people'. Yes, Bryanna struggled knowing the days of the week, even at the end of third grade. Yes, she had to have a visual schedule on the wall as well as step by step reminders of what she had to do to get ready for school. But, this wasn't odd, it wasn't weird, it wasn't different...it was just normal. It just was the way it was. Anyone who knew Bryanna saw that she loved life. She may have had her many struggles, but she persevered and she fought through them. She had a strong and beautiful place in the world, in this family.  Having a label that many expert clinicians diagnosed her with had no bearings on how she saw the world. Yes - it makes sense that we as society, that we as her parents and her teachers, understood that - but other than that, there was no reason for her to be treated any different than the kids at the park, or her classmates. Yes, we did have to make some concessions for her in some instances, yes, she did need quite time away from the noise, the lights and the people after going on a camp field trip to the circus which she didn't handle well....and many other instances, but she found a way that worked for her. Every day, we as parents learned something new from her. Every day we saw how brave, how strong and how courageous she was. Every day she made us, she made me...so very very proud. 

Why am I writing about one of her biggest struggles? A struggle that not many people knew about? I feel like her letter to us talking about how she saw the world different was her way of telling us that's its important for people to know that she was okay being who she was. She was okay being uniquely awesome. She was okay with the world. In the moments that she didn't understand the world, in the moments that she didn't understand why her literal understanding of the most basic thought made sense to her but not a friend...in her literal world - we got her. We understood her. We saw her. We had her back. Always - always and forever. As we always told her...just be you and be awesome!

Bryanna, Evey, Mike and I embracing the puzzle (Bryanna would have been around 3 and Evey around 1.5 ish)

April 2 was Autism awareness day - light it up blue. I know that there are mixed feelings about that day from parents across the board. I understand that there are parents struggling with a much tougher place on the spectrum, or with other disabilities. I understand that each person has their own experience and their own feeling about it. Please know that I hear you. I respect what you are saying and I know you have a struggle that no-one knows about. This is not a debate on what autism is or isn't, it isn't a debate on the new and old naming convention of autism, it isn't a debate on severity or who's struggle is more. It's a open armed hug. It is a hug for all the kids and adults...all the parents and grandparents, all the teachers and friends...all the humans having to cope with something that the world says is different. If the world just changed their perspective, then Bryanna would not have been so unique...she would just have been a little girl that did things differently. So with that, I stand with you...every person's struggle is different but through that I hope the world can find acceptance and love. 

I also say for the day I see blue on buildings and read the headlines "light it up blue".. every day is a day for something to be celebrated- be it autism, cancer, adhd, down syndrome, lung disease, depression, and the list goes on. It doesn't matter what diagnosis someone may have or not have. Every day is a day to be celebrated. It's a day to celebrate the fact that regardless of the challenge that person is up against, regardless of a diagnosis of a disease or disability, regardless of the severity, ...we should all celebrate the fact that we are living. We should celebrate that we are brave to face each and every day with the challenges that the world presents. We should celebrate that we are strong to get out of bed and get through whatever task is waiting for us that day. We need to celebrate the fact that regardless of ability, we are all 'humans', we are all loved and we all can love regardless of our ability. We should celebrate and go get donuts, chocolate cake or whatever makes you have a moment of happiness, a moment of bliss. There will always be someone who needs to say something...something to bring down that sun, something to stop your world from spinning even for just a moment. Yet, if we look through the eyes of these kids and well...'humans' who see the world differently even if it is just ever so slightly...maybe we could see a different view. Maybe we could see more love. Bryanna kept both her oncology team and ABC team on their toes because she handled treatment differently. She didn't tolerate much of the same things that the other warriors could. Not wanting to be touched changed how examines were, how she responded to pain tolerance and how they assessed her condition at the time. She made them look at the world from her view - made them see things differently. She wouldn't take no for an answer.  They saw things differently and adapted to her as much as treatment would allow. They continued to change their views to see through her eyes. They got her. I will forever be grateful and so full of love for her team, many of which I consider to be friends now.

The other day, Evey, Liam and I went to see Bryanna's puppy angel (this is taking the place of her headstone until we can pay it off and have it installed). It's beautiful and very fitting for Bryanna. Liam was wearing his now favorite hat - the hat that was given to Bryanna from a professional boxer that came to visit the kids at hemonc. He wears it to school, he wears it to the park, he wears it to the store and he would wear it to bed if we let him. He loves it because it was Bryanna's hat. So, on this day that we went to see her puppy angel (using the words "cemetery" feels so cold), he decided he wanted to leave his/her hat for her puppy angel. He thought it would make the puppy angel happy. As we were heading to the car, he realized that he really wanted it, he really needed to feel her on him. And still to this day, that hat is his comfort. 

So back to that mom in that police show - No--- my husband, my kids, our family, friends nor I will never ever be able to find what we lost. I will never be able to get my daughter back. Cancer took her too soon. I cannot change that. But what I can do is continue doing and spreading what she so passionately did...Love.

Heading home for Bryanna's one and only field trip home since being admitted at the beginning of August. She was given 4 days to boost her spirits (though not medically ready) and was able to make it 3 days before having to come back to the hospital in the morning of the 3rd day). I look cool as a cucumber here, but I was terrified to bring her home..to have her sit in a car for an hour when she hadn't been able to sit up in bed for more than half hour. Mike was sweating bullets as he was pulling the car around for fear that she would be around someone sick (we were at the ER entrance). But she needed this time. She needed to feel the fresh air on her skin and see the world outside the confines of the hospital. She needed home.

This is what heartbreak looks like. This is what love is. 

.

The power to find a song that speaks to your soul

One of Bryanna's favorite song is Fireworks by Katy Perry! When she was the sickest while on Ecmo (lung and heart bipass machine), she would respond to Fireworks. She would squeeze our hands, blink her eyes and her blood pressure would go up. When she would go back for her IT chemo, we would play the song, when we were in our kitchen making dinner, in the car heading somewhere, cleaning the house...just being a family and living life - Bryanna loved this song.  Somewhere along the way, Bryanna had started to grow up. She went from being the cute and cuddly silly little girl who loved Disney Junior to preferring the Disney Channel shows, listening and knowing all the lyrics to Taylor Swift songs and loving Katy Perry. I remember when the song Call Me Maybe came out. We had just moved to Maryland from Massachusetts, and Bryanna was in Kindergarten. She LOVED that song. That song was her JAM. Which of course meant that we were absolutely going to listen to that song anywhere and everywhere we could. So, one day we went to a local park and just as we arrived, Call Me Maybe came on the radio. The park was empty, so I opened the windows of our car and cranked the radio up. Loud. Bryanna, Evey and I got out of the car and had the best silly dance of our lives. We sang that song at the top of our lungs. We danced until we couldn't spin and twirl anymore. And just at the end of the song, a car pulled up staring at us like we were absolutely crazy. We were crazy - for that song, for dancing, for just being silly, for each other, for life. 

To have a song that touches your heart - that touches your soul is nothing to be shy about. Songs that speak to you help you get through whatever battle you may be fighting. They speak to you when you need to hear those words the most. They sing their melody to you when you need to lose yourself in that moment the most. Songs...or even music may seem so trivial in the scheme of life - but really they are so powerful. Evey and Liam cannot sleep now without piano music playing softly in their rooms. We started that two years ago after trying to get past the trauma of our house fire, the trauma of being woken up in the middle of the night and getting outside as fast as we could. The trauma of losing everything (except miraculously the kids' lovies). Piano music helped calm the fears that the shadows brought. Piano music filled the darkness with love and peace. Piano music helped Bryanna, Evey and Liam sleep through the night. Now, piano music is helping Evey and Liam fall asleep knowing that they have a special routine that they enjoyed with Bryanna that is helping them now. They know that Bryanna loved that same Piano music that they love every night. It calms their fears. It brings light to the darkness, it shows them that we care. They see that we take the time to put music on no matter how tired we are. They see that I make sure that the sound is just right, and the songs playing are just so. They know that Bryanna would have been happy. They are trying to find their place of comfort, their place of happy, their place of calm in the sea of quite and darkness. The one thing they tell me they know, that they always feel, and that they like is the love that they feel. The love from us, the love from Bryanna, the love of the every day special touches like music. 

When Bryanna responded to Katy Perry's Fireworks, it brought so much hope to us. She actually responded to Fireworks and when we talked about the trip we were hoping to take with the Make a Wish Foundation to Disney's Animal Kingdom. Those moments brought an indescribable feeling to us. It was hope mixed with sadness. It was love wrapped around the desperate thought that we would do anything to make her better, yet there was nothing that we could do. We found the right team of doctors and nurses, techs and staff...yet there was nothing more that anybody could do. That feeling of desperation that you see in parents that are losing their child in movies - that feeling of being on the brink of doing something crazy and drastic with the hopes that it would save your child's life. I understood that feeling - no, I would never have done anything crazy or bad. That would have only have hurt Bryanna and the rest of our family. But, I still know that feeling of being desperate to find anything that will help her improve - that feeling of hope when she shows improvement and that feeling of absolute despair and pain the moment that I knew that we had to let her go. I remember everything as if it was an out of body experience. It's weird how much of the three months that she was admitted to the hospital, that I remember in detail - yet I can't remember what I had for breakfast yesterday. 

Bryanna's subtle responses to Katy Perry's fireworks gave us so much hope. It showed us she was still fighting. She had strength, she had fight and she was showing that to us. Someday, I will write a letter to Katy Perry thanking her for giving Bryanna those moments, for giving her a song that spoke so deeply to her, that touched her soul. I think it is important for her to know how powerful her music is, and how it truly does touch people so deeply. Even spiritually. 

The past few days have been rough. We think about Bryanna so very much these days. Not a day goes by where I don't think about Bryanna a gazillion times. Every day the kids tell me how much they miss her, how much they want to see her.  Liam wants to go to the hospital to see where she was. He wants to see her doctors. Maybe someday. But for now, we have to find our song. We have to find that one that touches our soul and gives us that strength to fight through this loss - to get through each day. As Katy Perry sings "Do you ever feel like a plastic bag drifting through the wind wanting to start again" - Some days, that is the best way to describe how life feels..Not in a depressed, can't get out of bed kind of way, but trying to navigate life without a big part of me, without the missing part of our team, of our family...with a hole so deep and an emptiness that just can't be filled at the forefront. So yes, sometimes I feel like I am just floating through trying to figure out life and making sure that Evey and Liam know that we are here for them, that they matter and are loved...but feeling so lost in this huge world. But just when I feel like that, I think about what Bryanna would have said or done in certain situations and can't help but smile and be encouraged when I think how she sang and danced especially to this particularly powerful part of the song: 

"...You don't have to feel

Like a waste of space
You're original
Cannot be replaced
What the future holds
After a hurricane
Comes a rainbow
Maybe the reason why
All the doors are closed
So you could open one
That leads you to the perfect rod
Like a lightning bolt
Your heart will glow
And when it's time you'll know

You just gotta

Ignite the light

And let it shine
Just own the night
Like the Fourth of July

'Cause baby, you're a firework
Come on show them what you're worth
Make them go, "Oh, oh, oh"
As you shoot across the sky

Baby, you're a firework
Come on let your colors burst
Make them go, "Oh, oh, oh"
You're gonna leave them all in awe..."

After a hurricane comes a rainbow - we will find our rainbow. Somehow, we will try to find a rainbow in the smallest things each day.  Evey colored a rainbow and we put it on her wall by her bed. That rainbow gave her the courage to sleep in her room tonight. That rainbow reminded her of Bryanna, and that Bryanna would have loved it. She fell asleep quickly, next to her rainbow, thinking of Bryanna and being comforted by piano music. She is finding her song. 

Bryanna's Love

As we try to move forward with life without Bryanna, we decided shortly after she passed to share her love with others as much as possible. Bryanna had a contagious smile and though she didn't like to be touched - she touched the lives of so many people around the world, even today. So we decided to create a foundation where we give snuggly stuffed animals to the kids fighting the fight on hemonc, CICU and the NICU - all places that she stayed for extended periods of time during her fight to survive. We asked our daughter, Evey, what we should name it and we got 'Bryanna's Love'. We want this to be something that we as a family can do together as we move forward in life - something that the kids can do while growing up knowing that they helped other kids in honor and in memory of their sister. Something that we can all be proud of...something I know that Bryanna would have loved. We are also extending this by collecting donations of soft blankets for families that are by their child's side during their stay. All of these  made a huge impact on us, and so we just want to give back. We had our first stuffed animal drive two weeks before christmas - and in just two weeks, the response was overwhelming. We got over 300 new stuffed animals that we were then able to donate directly to the kids on Hemonc/NICU/CICU at childrens national hospital in Washington DC, where Bryanna was treated. We are going to make this an annual drive in which we will donate around her birthday on July 9th. The idea is that the donations that we get bridge a gap during the summer months where the donations from christmas are depleted. 

However,we will always except new, clean stuffed animals with tags at any time at our PO box. We do ask that the donations be new with tags or in the packaging as these will be going to very medically fragile children who cannot be subjected to any dust, pollens, animal fur, bacteria and the list goes on. We truly appreciate all your support as we spread Bryanna's Love to the children battling the toughest battle of their lives. We hope to give them even a moment of snuggly love and smiles, like Bryanna was given so many times during her 3 month battle. 

We will be starting our next campaign (which will be our annual campaign) at the end of April and will keep you posted about the details. In the mean time, we will always accept donations at our PO Box (PO Box 448 Burtonsville, MD. 20866) year round! Please feel free to check us out on our facebook page (https://www.facebook.com/BryannasLove/)! We would love it if you could help us spread Bryanna's Love!  
                                      
 Please feel free to send donations to:
                                        Attn: Bryanna's Love   PO BOX 448, Burtonsville, MD. 20866


We have recently partnered with a wonderful foundation call A Moment of Magic - Their mission is to bring joy to kids battling cancer, one princess at a time. We are working with them to coordinate visits to the kids on hemonc at Childrens National as well as to share Bryanna's love through donations of snuggly stuffed animals to the kids that they visit at other hospitals around the nation. A Moment of Magic is such a wonderful organization of which, I know for a fact would have brought so many smiles to Bryanna during her struggles. I am so happy that we have connected and look forward to the amazing things we will accomplish as we work together in supporting both of our causes. We are small and we are a young but I know we can touch the lives of so many kids!

They just gave a beautiful shout out to Bryanna's Love on their facebook which made us so happy and feel so loved. Our mission is to spread Bryanna's Love to as many kids and families as possible. In doing so, we are going to be starting up another campaign for donations of stuffed animals (new with the tag on) as well as soft cozy blankets for caregivers to give them a little sense of comfort while living at the hospital. We know first hand that those simple touches make a big difference. 

I offer no judgment, just an endless supply of hugs, love and understanding.

When you go through the McDonald's drive through at the end of a busy day and you pay for your food - you are presented with signs on the window asking for your donation for the Ronald McDonald house. When you go to Wendy's you are asked if you want to donate a dollar and get a key tag to redeem a JR Frosty at any time. When you watch TV on any given day, there are commercial after commercial about chemo therapy, cancer, St. Judes and the list goes on. The pictures and videos always depict a happy smiling child either holding pom poms or walking down a hallway, or sitting in a beautiful outfit with a headband or hat on.

When we were living at Childrens National Hospital, day after day, night after night for three short yet long months, we were always surprised that it was nothing...and I mean NOTHING like those commercials. The kids on hemonc were too sick to be playing in the hallways. They were too sick to be running around shaking pom poms. Most kids didn't wear their regular clothes or jammies...they just felt too sick.

When I go through the Wendy's drive through and am asked for the millionth time if I want to purchase a key tag - I just want to cry. I want to scream and show that I am a cancer mom and those key tags didn't help my baby survive. I can't buy her one of her favorite treats from wendys or McDonalds. I can't buy her a strawberry milkshake with extra cherries and watch her get whipped cream all over her face trying to dig the cherries out. I can't watch her excitement when I pull up to Wendys and order her one of those chocolate JR. frosty's.  I realize that I get a little mad and I think to myself that cancer is not all the pretty, happy, cute and chubby faced kids that the commercials show. Yes, the steroids and chemo more often than not do make kids gain weight - not Bryanna. Yes, there are hopefully good days where kids will want to and be able to play with their toys, their pom poms and their friends, and yes there are times when hopefully those kids will be able to run down the hall and laugh and shriek with excitement that they made it down the hall so fast. But that was not the picture we saw. Not with Bryanna and not with the kids on hemonc at Childrens. I understand that in order to raise money for the critical research required to save the lives of these very children, organizations have to show a pretty face - they have to show what the average people want to see. That's what I understood cancer to be before it gave us a brutal wake up call. That's what seemed normal. Please don't get me wrong - I have the utmost respect for all of these organizations, researchers, doctors, marketers...everyone. They are saving lives. But it doesn't make it easier.

I remember one morning during rounds when all the doctors were talking with me about Bryanna's progress, her treatment and how difficult it was. I remember that a little boy much younger than Bryanna, maybe somewhere between 3 and 5 years old was walking in front of his parents crying so hard. They had to walk through our group that was standing outside our door to get down the hall to his new room that he was checking into. His mom and dad were walking behind carrying his bags looking equally as sad, though trying not to show it. I cried for him. I cried knowing that this little guy is going to have to endure more sickness and pain just so that he can get healthy. I cried for him knowing that checking in meant the loss of his freedom, it meant fear, it meant anxiety, it means being away from home and it meant cancer. As this little guy was coming down the hall and through our group, everyone there knew him. Every Single practitioner that was there knew him. They all tried giving him high fives and gave him words of encouragement. I don't think he heard any of it.

I saw that sadness, that fear, that anxiety in Bryanna. I saw it in her every single day. I heard it in the words she shared with me at night when no one was in the room - in the few moments that she had to herself.  Cancer takes people to a very dark place - it can easily suck the light out of a person's soul. Surprisingly, Bryanna didn't let it - I don't know if it was because we tried to be up beat and encouraging, maybe it was because she was never alone. But whatever the reason, she fought her hardest and she gave it her all. Yes, she no longer named any of her stuffed animals once admitted - This is a monumental change for her as she named every little spec of a friend that she had up until this point. Yes, she stopped writing in her journal and stopped writing poems. But she still painted. She still painted hearts and animals. She still found a way through all the pain and suffering, all the fear and anxiety to find love of which she showed in her art work.

We found a poem after she passed away, on her bed and under her stuffed animals. We don't know how it got there because she would have wrote it before she was admitted to Childrens hospital. But this poem talked about a soul looking down on her and how scary yet beautiful it was. She ended it by saying good by world, good by soul. Bryanna was not a depressed child but she was sick for months before being diagnosed. She knew she was sick and I knew she was sick. I just didn't know how sick - no matter how many doctor appointments we went to, leukemia never presented. It always bothered me and I'm sure our doctors, who were and still are ever so gracious and inviting to us to bring any of our kids in for assessment anytime. Our team, both before she was admitted to Childrens, at Holy Cross and at our Pediatrician's office all did everything they could for her. We will always wonder if it had been detected sooner would she still be alive - but we never doubt any of her doctors. They did every test possible up front but the leukemia outsmarted everyone - it hid until the very last minute.

But beyond medicine, I believe that her poem told us everything we now know - Bryanna knew her time was coming. Bryanna told me as such during many of those nights at the hospital. She knew she was going to die. It breaks my heart that she felt that way before though.

It would be so easy to stuff all of Bryanna's stuff into my walk in closet and lock the door. But we found that doesn't work - it doesn't make it easier on anyone.  Bryanna would have hated that. So, the other day we went through the majority of Bryanna's items from the hospital. We got pink bins to store them in. Pink - that was her color. This weekend we rearranged Bryanna and Evey's room to make it Evey's room. Evey thought for sure that she would feel so much better and not miss Bryanna that way. We knew that it would be just as hard because now there is an emptiness of a bed gone. Evey decided that she wanted to keep Bryanna's bed as hers so we are likely going to donate Evey's bed to a family that needs a nice bed. We changed the entire look of the room to hopefully take some of the void away. We put a reading nook where Bryanna's bed was. We kept her light and bed stand as part of the reading nook so they can feel a part of her while Evey and Liam snuggle their bean bag chairs and read or chat.  It is an adorable room. It is a room with such a void that no matter how many times we rearrange it, it doesn't feel right. Evey was excited to sleep in her room last night. She came into our bed in the middle of the night scared that she was by herself. She started in her room tonight and before she even fell asleep came into my bed. We struggle to find the balance of moving on and trying to fill the void. I feel like Bryanna is right here with me sometimes and other times emptiness.
I don't know how we are going to get through this. Counseling and love are great - but they only do so much. Trying to explain to the kids what "she is in our hearts" means when that is not physically possible (my kids...especially Evey is very literal) and reminding them that she is our guardian angel in heaven, but having to explain the physical location of heaven not being on earth and yet not in space - how does something like this happen? How did we become a cancer family and then one day we are just a family...broken and trying to pick up the pieces?

As hard as it is to go through the McDonalds drive through and see the donation box for the Ronald McDonald house - they were a god send for us. They gave us hugs and snacks and coffee..washer and dryer at no cost...goodies for Bryanna and a safe space for her to draw on a chalk board (even though they had to rearrange the room so her wheelchair could fit in..) and a reprieve. They never thought twice. They just were there for us. Thanks to the donations...they were there for us and many other families.  As much as it makes me want to scream and cry when they ask me if I want to by a key tag at Wendy's for donation to St. Judes, St. Judes was instrumental in assisting in getting Bryanna on the most appropriate protocol for treatment...only after they gave a final diagnosis of ETP-ALL. St. Judes, largely thanks to the donations from all the generous people one way or another, identified this mutated gene that causes ETP-ALL and is one of the few places continuing research to save the lives of other kids who are diagnosed with ETP-ALL.  I have only read one story of a little guy surviving this deadly disease - but he did. So, as much as I want to scream and cry and hate all the commercials - they are saving kids lives. They did everything they could to save Bryanna's Life. For that, I am eternally grateful. They certainly don't show the ugly, but perhaps that is how they get so much support - they show what we the people want to see - they show hope.

I support hope - I support love - I support strength - I support every single person trying to battle the hardest battle of their lives, be it as a patient or as a caregiver by their child's side. I stand with you and I stand by you. I understand. I offer no judgment, just an endless supply of hugs, love and understanding.

When you think that you just can't walk anymore, remember that you got this.

Sometimes it seems like the world spins so fast and we get lost inside. It seems like as life moves on each and every day, that those who are dealing with something so huge, so significant that they are trying to claw their way out of the center of that world and take a big breath of fresh air, just see the world spinning and can't move with it. That is not us. That cannot be us. It would be so very easy for us to get lost in the center of the world as it spins on it's axis while life moves on. It would be so very easy to get lost in our sea of sheets and comfy blankets and not get up when we realize that we did lose that hour of sleep thanks to day light savings. It would be so very easy to keep everything that was Bryanna's in the exact same place and walk by it as if she would be coming home later in the day to pick it up or move it, to snuggle it or talk about it. It would be so easy to forget how devasting the her struggle was, how devastating Evey and Liam's struggle was and is and how devastating that struggle still remains. It would be so easy to keep buying her favorite cheese, or to make her favorite dishes that no one else liked. It would be so easy, yet it's not.  The world keeps turning and we continue to press forward - we continue to try to remember Bryanna, talk about Bryanna and love Bryanna but we can't close the curtains and live in darkness. We can't continue to buy the foods that only she would like. We can't walk by a toy that may have fallen while the kids played and leave it as is, we can't ignore the fact that she is no longer coming home, that she will never, ever sleep in her bed again. That she will no longer be on the couch, snuggling her animal blanket and puppy and basking in the glory of no school on a snow day.  But we do have to keep reminding the kids that it's okay to not be okay in that moment that we once again realize how empty the table feels and how empty her bedroom feels. We have to keep reminding the kids and reminding ourselves to look up at the sky and know that Bryanna's star will always be there. That it is okay to go to the cemetery when they want to see and talk to Bryanna's puppy angel. It is all okay.
Today was a great day here at home. It was the first snow day of the year, which meant movies and popcorn, inventions, makeshift parks that we all played in (Evey created obstacles to go through out of boxes), some homework and lots of snuggles. But with all those snuggles and all the fun things that we did today, we would stop and reflect on how much Bryanna would have laughed at this or looked at that, how we miss her at the table or hearing how excited she was for the snow. It's in those moments that we are having fun, or that we are having a good day that we miss Bryanna. It is in those moments that we have to brace ourselves for that impact that this is reality. It is in the moments that Evey or Liam will remind us that we are not whole because we are missing a vital part of our family. It is in those moments that we have to remind ourselves to breathe.

As we move forward with life after Cancer, after ETP-ALL and chemo, endless medications, pain and suffering, we have to make sense of what happened as much as we can. Evey struggles with where Bryanna is now. Not whether she is in heaven or where her spirit is - but where exactly is her body. Liam struggles with kids nearby playing as if they died or playing as if they are hurt or sick - he will tell them "I have a sister. Her name is Bryanna. She died".  How do you get kids through something so heartbreaking. In their mind, there is an order to death. An order by age and it makes sense. Kids should never die before their parents. Kids should never suffer to any degree and especially not to the degree of what ETP-ALL, what cancer - did to Bryanna.

In recent days, I have heard about advanced treatment and new treatment for various types of cancers including leukemia - yet I have not heard any news about ETP-ALL. I can't help but wonder if this new AML treatment could have given Bryanna a chance of achieving remission. Yet, I have not heard any mention of this difficult and almost incurable type of cancer. It is as if it doesn't exist. They say that only 4 percent of funds go to research for childhood cancer. If that is true - why is that? Aren't kids our future? Shouldn't kids, the most vulnerable and the most delicate need us - the adults and professionals, the scientist and the most educated minds - to have the funds to find treatment, to find a way...to find a cure? Don't we owe it to these kids that are fighting the hardest battle of their lives - the vast majority not even old enough to have tested the boundaries of good and bad in life, not even old enough to question fairy tales yet old enough to believe in fairy bubbles for protection, to believe in the tooth fairy, to believe in santa clause and to believe in hope? Shouldn't we be able to fund hope? If 96% of all donations go to adult cancers, can't we rethink how research is conducted?  Don't get me wrong - without these researchers and doctors - there would be far more deaths to report. There would be significantly more moms and dads saying what we say...Another Day. We Got Through Another Day. But there has to be more that we can do - the doctors and researchers are working so very hard to save lives - we have to help them get the resources they need to save these lives - to save lives like Bryanna.

Early T-Cell Precursor Acute Lymphoblastic Leukemia - Discovered by St. Judes Children's Research Hospital. Research continues through St. Judes and Washington University's Pediatric Cancer Genome Project.  Survival Rate is one of the lowest at 30% for pediatric cancer. Research and Medical Journal articles are so limited that Bryanna is now likely a patient that contributes to saving the lives of other kids.  I pray that the day comes soon where ETP-ALL can be cured - not for 30 percent of patients,but for all of the patients. I hope that Evey and Liam do not fall into the statistics of which state that 1 in every 500 siblings will get leukemia. Bryanna sure defied all statistical odds (and not in her favor). Let's hope our family can now beat the odds.  I hope for our family that we can not only continue to get through another day and remind ourselves that tomorrow is indeed a new day but also get stronger with each small step, with each reminder, with each breath.

~When you think that you just can't walk anymore, remember that you got this. You got here and you can get over there. You are strong, beautiful and will get through this. Today is another day but tomorrow is a new day.  Remember that even when you don't believe it...you got this. We will be here right by your side and on the days that you can't get up by yourself, we will help you get up. On the days that you don't think you can do this anymore, we will make sure you can do this. You will never be alone. You got this. ~
 - That is what I said to Bryanna over and over during treatment. I hope it gave her some courage when she needed it the most.

Tomorrow is a new day.
                             
             

The power to love: The Strength to See The Power of Love

The power to love: The Strength to See The Power of Love: Having the strength to love is such a powerful thought. Growing up, I always thought about how my life would turn out - I thought for sure ...

The Strength to See The Power of Love

Having the strength to love is such a powerful thought. Growing up, I always thought about how my life would turn out - I thought for sure that I would find the perfect man, fall in love, have the perfect group of kids, work, live and love. What I didn't know is that my life would not take that beautifully carved out path that I though it would. But that's not to say that my path hasn't been full of love. 
I grew up in Japan - a beautifully gracious and amazing country. I am lucky enough to call two countries my home. After graduating high school, I embarked on the longest adventure that I had ever had - I moved to the US to attend college...it was much like boarding school as my family was still in Japan. So, I went to college, I worked through college, graduated and then shortly thereafter, I met my husband and I fell in love. I fell head over heals in love. Soon after we were both excited to be blessed with the fact that we were going to have a beautiful baby girl. We named her Bryanna. We feel in love with this little girl before she was more than the size of a pea. She was perfect. She was everything I had ever hoped for in a baby - when she was no longer in me. I was never a beautiful, glowing pregnant mommy to be, with any of my kids. But, once she was born, I feel in love with her all over again. Bryanna made me mommy. Bryanna made Mike daddy. She made us better people and the world, a better place. Bryanna confirmed everything I thought I would love about being a mom - it was amazing, it was beautiful and it was everything I always wanted. It was also dirty, exhausting and isolating. Any new mom would tell you that there are the many days that you miss just dropping everything and meeting up with a friend to have dinner at the drop of a dime...feeling totally refreshed and energized, clean and well, just human. But, I would never ever give up any of the late nights with fevers and throw up, potty training, never ending (and impossible to keep up with) laundry, skinned knees requiring the most tender kisses better, hugs, squeals of pure delight when seeing me after work - the first question is do you have a treat for me....the extra treat that I would pack in my lunch knowing and expecting that sweet little question from Bryanna. Bryanna laid the path for Evey and Liam. Each one of our kids has grown into their own personality with their own uniqueness that makes them so very special. Each one being just as uniquely special as the other. 
I was once asked how I split my love among three kids. She wanted to know how it was possible to love each kid just as much as the other when we as the parent only have one heart and only so much energy to give. I thought about that long and hard. We don't (at least I don't) split my love but rather I love each one of them for each of their own unique personalities so much. Never one more than the other because I believe that as our family grows, so too does our hearts.  As a person, I believe that our hearts our so strong and so powerful that we can love more than we realize, more than we think we can. We just have to have the strength to understand that. We have to have the strength to continue to love even when we lose a part of that heart that continued to grow with each special person in our family. 

Bryanna at the age of 9, only 3 weeks after her 9th birthday, only 2 weeks after her last adventure packed trip to Myrtle beach, only 2 days after her first overnight stay at her favorite camp (Camp Sonshine), was admitted to the hospital critically ill. What we thought was Menengitis turned out to be one of the most rare forms of childhood leukemia - ETP-ALL. That moment when the doctor took my hand and told me that she had leukemia, the moment that her oncologist sat down with us and told us to call the Make a Wish foundation, the moment when she was first intubated due to compensated septic shock, the moment when she smiled because I made her fly by sitting hard on her bed...the same bed that she could no longer freely get out of due to her loss of mobility, the moment I saw her heart stop and the doctors revive her, the moment she squeezed my hand, the moment she looked in my eyes, the moment that I know that this was the day that would be her last, the moment I laid next to her with Mike on her other side and we let her fall asleep and be at peace...the moment that we learned how much love was still in our heart even though there is now a gaping hole where she should still be....these and many many more are the moments that I will never forget. The moments that we all try to get through on a daily basis. 

Like Mike and I, Evey and Liam are trying to work through their moments, their whys, their hows and their what do I do nows. Every day is hard, some are harder. Every moment is trying, some are better. Some days we can't breath and other days we just tell ourselves to put one foot in front of the other so that you can get the job done. But at the end of the day - we try to see the beautiful sun in the sky, the wind rustling the trees back and forth, the deer that come up the hill behind our house, the bright start in the sky every night - Bryanna's star. We try to see the beautiful part of life that we know Bryanna would have loved. We try to have the strength to continue to love each one of these things and more. The one thing that we have no difficulty is finding the strength to show Evey and Liam how we continue to love them. Their lives are just as important. They matter just as much. They fill my heart in just the same way that Bryanna did, yet in their own uniquely beautiful way. Regardless of what happens in life - we are a family of five. We are family. We are love. We are strength. We are brave. We will get through this. 

When you lose someone so close and so young, you are showered with love and support from everyone you know and don't know. You are put into this bubble that seems to continue to grow - much like your heart. But then as time passes, life continues to move on, the world keeps spinning, we find that that bubble starts to shrink and then somehow, perhaps by our own doing, that bubble becomes really small with close friends and family. That bubble starts to become isolating and lonely. It doesn't matter how much love is extended to us - we have this gaping hole where Bryanna should be. We have this empty chair - this empty bed, this empty laundry basket, empty spot where her backpack should be hanging, we have an empty place where her tooth brush should be, and empty spot in the refrigerator where her favorite food would have been. We have an emptiness in our heart that no matter how big or small our bubble is, no matter how much love there is, we can't fill. 

But we have to remember that we have to have the strength to love. We have to continue to have faith that we will get through this storm - we will get through the shock of cancer and the pain it has caused. We will make sure that Evey and Liam know that they are loved, that they matter and that they belong - they always have and they always will. They are our heart, they are what makes the world spin. 

As I figure out my way on this blog, I am going to try to bring awareness to ETP-ALL. I will someday write in more detail and in a different platform (perhaps a book), but for now, as we get through these early days of missing Bryanna, of figuring out how to take that next step forward, I will post here. As hard as it is, I will close the chapter of CaringBridge and will continue my journey of life, healing and love through my new blog. I'm hoping you will continue to walk that path with me, continue to read my entries and continue to look for Bryanna's star.  Hopefully this will help a little in my healing process - and maybe...just maybe my blogs will help someone going through a tough time, somewhere out there.  Cancer does not discriminate and cancer is scary and messy and painful. Parenting is dirty, exhausting, scary, amazing and beautiful all at the same time. Maybe, just maybe I can find a way to bring the two together and help support what we call the cancer family - but even if you have not been affected by cancer, maybe there is something else in life that has touched you or affected you so deeply that you too are trying to find your way. Maybe you lost a child or loved one as well - I can't take your pain away. I won't even try as I know that nothing but time will ease my pain of losing my beautiful girl who had the most brightest smile (though hugs do seem help). I know that the day will come where this pain is manageable - that it will be okay to breath knowing that I won't feel the stabbing pain of loss with every breath. That day will come. In the mean time, I am going to continue to look at the sun and continue to have the strength to love. I hope you too can find the strength to see the power of love.