Today, August 3rd has so many memories as posted on Facebook.
August 3, 2012 -
Today is the first day of my second trimester ~yea~- This morning Bryanna gently placed her hand on my belly and said: "Mommy, your belly is getting soo big". ;)
Bryanna was 6 years old, Evey would have been 4 and Liam was in my belly.
August 3, 2014-
"Spending a day at the zoo with my favorite peeps was the perfect pick me up."
August 3, 2016 -
What I thought was the worst day of my life...
A post from my sister:
"My sister asked me to post and request a prayer warrior group. Her oldest daughter was diagnosed with acute leukemia today and they are wanting all the prayers possible. They are gonna be staying at Childrens National Hospital for several weeks as she begins her treatment tomorrow. This is gonna be a long road for Bryanna and Kristena but we got your back... and the prognosis is high for peds leukemia..."
~3 weeks after Bryanna's 9th birtday - Evey was going into first grade...Liam was only 3.
Statistics say that the prognosis for Pediatric Cancer is high - Each year, more research is conducted, more clinical trials are created, more children are being cured. And yet, more children still are diagnosed with cancer. More children are still dying.
August 3, 2016 - After a very long day, Bryanna's IV was hurting her hand. I asked someone if they could help her with that - it turned out to be a doctor who was happy to do it himself. I never left Bryanna alone. Ever. At that exact moment, Bryanna's lead doctor asked me to go with them to a conference room. I asked them if we could wait until after they fixed her IV. They asked me if we could go then. Until this time, I had never left Bryanna. Yet, I left her side because I knew this was bad. We walked into the room - the doctor shut the door. Two doctors sat across from me, the other doctor sat next to me. She took my hand and she said "Bryanna has Leukemia". I felt every feeling in that moment - I was suddenly unable to breathe, I felt like my heart could stop any moment and I felt like I could see all of this from above - I did everything to not pass out. I cried, I shook, I tried not to throw up. The doctors realized at this point that I had not eaten that day and it was already after 5pm. One of them ran and got me food, though I didn't eat it. Then, I dusted myself off and I asked tough questions. What we knew was that Leukemia was very serious but prognosis has improved drastically for patients like Bryanna. Yet it didn't.
After I could breathe, we called Mike together because he had just left to let his dogs out. He learned about her diagnosis over the phone while driving. There is no good time to learn about Cancer. That night, I called my family, and Mike called his. We didn't know what the next day, hour or minute held but we knew we had to fight. We have to fight until every single cancer cell was out of our baby. Until we couldn't. Less than three months later, she died. Statistics didn't matter to us, because every news we got was worse than the one before. We went from 80% survival rate, to 70% survival and then with the final diagnosis of ETP-ALL we were told she had a 30% survival rate. Damn the statistics - my baby was not a statistic. These children are not statistics.
Science may say that Bryanna is a statistic. Society may say she was a statistic. But we know that Bryanna was a beautiful little girl that LOVED to sing. She loved making videos with my phone without me knowing. She loved Katy Perry and Taylor Swift. Her favorite song in the entire world was Fireworks. She loved to sing and she let the world know that! She loved glitter...Oh she loved glitter. She loved gold, silver, pink, blue, purple and every other color in the rainbow. Elsa was her character of choice and she made Evey and Liam dress up as Anna and Olaf and created "live shows" for me to watch. Bryanna loved stuffed animals and real animals - and I mean REALLY LOVED ANIMALS. She connected with them. With horses, cats, birds, dogs...she had a special connection with any animal she came in contact with. Bryanna cried with me when the shelter dog commercials came on. She had compassion and empathy. She didn't really like popcorn much but she certainly loved sour patch kids. She loved to tease me and say they were sweet and laugh when I was "suprised" that they were sour. Bryanna loved to go to bed with Evey and Liam, have our story time and then come out and have an ice cream date with me after they went to sleep. During that time, Bryanna would tell me whatever was on her mind while we shared a tiny container of icecream. Two spoons, 1 container and lots of love. 10 minutes. That's all it took - 10 minutes of pure joy and love and ice cream. Bryanna was a damn good fighter. Bryanna knew she was dying yet she took it all on with grace. With all the extrodinary pain that she endured every single second of the day, despite all the meds to mitigate it, and despite the fear when the lights went off - she dealt with it all better than I could have ever have. Bryanna is my hero - she is someone that I admire, respect, love and look up to. She is someone that is the role model that I had hoped to be to her. She saw the good in the bad, and the beauty in the ugly. If folks would see the world like she did, it would be a much better place.
Tell me, does that sound like a statistic to you? When parents are sat down and they are told the survival rate - those kids that are grouped into the fatal group and the survivor group become a statistc. Sure - that's necessary for gauging the progress and scientific advances. But in all those advances, society forgets what these statistics mean -
They mean Bryanna who was diagnosed 3 weeks after her 9th birthday and died on October 24, 2016 and who would have been 12 as of last month. They mean Micky who died only 2 short weeks after his 12th birtday on April 13, 2019. They mean Siona who was diagnosed at 4 years old and passed away in 2011. These kids had ETP-ALL. These kids make up the 30%...that 30% that we were told would never be our kid.
Today, 3 years ago was the day that we were told that Bryanna had Leukemia. It was the worst day of my life - or so I thought.
Today as I was driving, a car pulled in front of me with the license plate that said "BR3TH3" with a butterfly next to it. Today, Bryanna has shown herself to me in so many ways...to my family. To my friends.
Three years ago today I held my baby as she slept knowing that we had to get through this, we would get through this and we would have hope.
Today, three years later - I ache to hold my baby, I ache to hear her voice, to feel her touch, to smell her. But I still have hope. Today - three years from now - I will still have that ache, but I hope that her love will still be as strong in my heart as it was then.
Three years ago today, my world was forever changed.
Three years ago today my heart shattered - but my love stayed strong.
I miss you so much Bryanna. Forever and Always baby girl. Forever and Always.
October 24, 2016, we woke up to knowing that this would be the last day that Bryanna would live on this earth. I knew in my heart before the painful meetings with the team, before the decisions were made, that we only had a few precious hours with our little girl. I knew in my heart that she was dying way before this and I knew on this morning...actually from the night before that there was no chance of saving her life. I knew that I was having to say goodbye.
Bryanna was only diagnosed with ETP-ALL less than three months prior to this day. One day within a month or so of her diagnosis, I decided to bring my digital camera into the hospital and started taking pictures. I told myself and others that this was to document her progress so that she can look back at how far she had come. I said to myself that she would one day get to a place where she could see how beautiful she was and how hard she had worked. I told myself that we would be looking at these pictures someday after she was in remission and give her a big hug and say how proud I was of her getting through the toughest battle of her life. That's what I told myself. But honestly, that's not why I did it. I was telling my mom one day what I had told myself and she saw right through me...as she always does. The truth was, I knew that I was documenting the last days of her life. I knew that she was dying and I knew that I needed to have pictures of her battle, of my little girl fighting so bravely, some times when the meds were kicking in, with a smile. My girl was dying. My baby girl who had only turned 9 three weeks before her diagnosis and 3 months before that faithful day where I knew I was going to have to say goodbye. My baby girl was dying.
October 24, 2016 at 2:14 pm, as I laid next to Bryanna in her bed in the CICU with her in my arms and as her daddy held her hand. On 2:14 pm as the monitors were silenced so we would not hear the screaming alarm of no heart beat, as I once again for the second time watched as her heart rate dropped to 0 and a flat line kept moving across the screen... On 2:14 when her favorite song Fireworks from Katy Perry was looped again for the umpteenth time by her oncology fellow...at 2:14 when I panicked as I saw the color drain out of her body and her body go cold. As I looked up at her oncologist panicking and was reassured that this is part of the process ---on 2:14 when my baby, with a look of peace for the first time since before her battle in the hospital started, became an angel in my arms...on 2:14 when I cried and apologized for not being able to fix her and make her better, when I cried and cried without being able to bring her back. On 2:14 October 2016, two years ago as of 3 days ago...I held my baby for the last time as she laid in my arms and died for the second and final time. This time, they didn't try to bring her back, this time Mike and I had given permission to shut the machines off and remove her from echmo. This time we had to make the choice to allow our baby girl to die. To truly end her battle with her aggressive and ugly cancer, to end her battle with the anti-bacteria resistant c-diff and ecoli and now what appeared to be a new fungal infection. We gave permission for her body to relax, for her heart and mind to be at peace, for her soul to be in a less painful, less stressful place. Two years ago, on October 24, 2016 at 2:14 pm, my baby girl - Bryanna Rose Kitchen went to heaven and became an angel.
For 2 years my children have had to deal with the fact that Bryanna has died. For 2 years, my children have had to deal with the fact that they feel an unimaginable void that most other kids do not ever feel. They have to go to school where their friends get to talk about their sister, knowing that they are coming home to pictures, some memories and no sister. My kids are faced with the fear of death and cancer in a way that most grown ups never have to face. Evey's number one fear is to die. That is not unrealistic - she saw her sister die, she had to bury her sister.
That's only part of their struggle.
This summer, I made a really difficult decision to move from our apartment that we lived with Bryanna, into a bigger and beautiful home. It was an incredibly difficult decision because we could all see Bryanna in the apartment. We could remember her walking and saying and doing things there. Now, we were moving into a home where she never lived, where she never left her mark. I had to take her stuff off the wall that together we put up. I love our place, and I do believe she is with us here, but the nights where I stand in our hallway and I look at both kids rooms - the first time that they each have their own room, I am incredibly saddened by the fact that there is only two rooms. Part of the reason that I made this decision to move was because Evey no longer slept in the room that she shared with Bryanna. She still says to me at times that it's really lonely without her at night. I completely understand. I feel the same way - I no longer get to have our 10 minute ice cream dates at night after Evey and Liam fall asleep. I get it.
Three days ago marked her 2 year anniversary of becoming an angel. It marked another day, another year that we survived without her. It marked another day where our reality is so starkly painful and true.
There are many people who have so graciously and lovingly been there for us right here locally, across the country and even internationally. We are so blessed to know that Bryanna has touched so many people that still love her and still remember and think about her.
There are also those who don't understand why we still celebrate these anniversaries, birthdays, little things that happen throughout the year. I understand that they don't know what to think, I understand that grief is awkward and uncomfortable for those who are not faced with the same reality or choose to not be faced with the same reality of the death of a beautiful girl. The fact is, this is a reality that hits home to so many families...but the truth is if you don't go through it, you don't really know how it feels. I didn't...until I did.
But the truth that is heard from so many beavered families are that society often times (excluding the core group of supporters) puts a time limit on grief. Society often puts expectation on grief. Society can at times put unreasonable rules on grief. I am not a medical expect, or a mental health, grief specialist, if you will. I am only just a mom who is trying to get through the death of her child, trying to get her two other children through the death of their sister. But what I can say is that often times we as the bereaved families hear of the 5 steps of grief that we are going through. Having steps of grief makes sense, because as a society, we are governed by rules. If there are steps that one would go through to get through a break up, a divorce, trauma...then naturally it would make sense that there would be the same for grief. But honestly, why do I have to follow those steps? My grief is different from another mom's grief and is different from my children's grief. My grief is different from Bryanna's dad's grief, and her friend's grief. My grief is different from those who stay close and celebrate Bryanna with us and those who have chosen to distance themselves to protect from the inconvenient, uncomfortable "stages" of grief. I have spoken to many grieving parents, and many of say the same thing. We grieve differently and not necessarily in the order of the "steps" established by society. In fact, we tend to jump around in our grief. At times, we may feel like we can't get out of bed, and other times are happy that our child is no longer in the pain and fear that we knew that they were in. Other times we are angry..some parent's more than others, then back to the first stage of grief of denial. Then what happens when we "achieve" or "satisfy" all of those steps of grief? Does that suddenly make us forget about our pain, or the fact that we can't hold our child anymore? Expectations, rules, stages - they don't always apply to grief even though it would be easier and more convenient to package them in a box and wrap them with a bow. But if we did that, couldn't we just avoid it all around?
Grief is more like a yo-yo. Just like cancer, grief does not discriminate, it does not hold back and it is not gentle. But neither is death. Neither is cancer and neither is watching your child die.
I think what I'm trying to say is thank you. Thank you to all of those who have given us so much support and love. Thank you for allowing us to not be okay. It's okay to not be okay. If we have a day that is bad - thank you for letting it be bad. Thank you for allowing us to cry and to maybe even scream. Thank you for letting us share memories and say her name. But also, thank you for letting us laugh and reminisce. Thank you.
As discussed in length with other bereaved families who lost a child to childhood cancer, we know that this sentiment is sadly not unique.
For those that understandably see our grief as uncomfortable, that won't say Bryanna's name, that won't let us share memories...we ask for gentleness and grace. We ask for love. For understanding. Society, and often times those closest to the grieving family often ask when the anniversary celebrations, the birthday celebrations, the constant reminders and conversations stop. When is it too much, too long and bordering the line of crazy? Why do we still do all this? How long do they have to partake in these events? Would it seem insensitive to not be a part of it anymore. For those who just stop being a part of it, who make silly excuses, who label a birthday party to celebrate the life of a little child as just a barbecue or an anniversary dinner as just a gathering for dinner. Know that we are also trying to understand and be gentle and to give grace. But know that it is way harder on the grieving family. I promise you that.
When society wonders when is it long enough - the truth is never. If Bryanna was still alive, if she was still battling this horrible disease, or if she never was diagnosed with cancer, she would still be celebrated like Evey and Liam. Had Bryanna's treatment gone as planned and if her body had responded to the treatment like everyone had hoped, we would be 6 months away from the quoted length of treatment of 2.5 years. That would have been another celebration.
When I watch videos of the child ringing the bell that signals that they have completed their cancer treatments and no longer require it, my heart breaks. It breaks because while I am so happy and grateful that they were able to beat this horrible disease and have a chance at a life of happiness and opportunities, I know that Bryanna will never get that.
When society asks when is enough - I ask that you remember that I will never stop celebrating my baby girl. We owe it to Bryanna and all the children that have died from childhood cancer to NEVER stop celebrating their lives and to continue to share their stories. If we don't, then not only does it diminish their existence in this world, but it also does not help get awareness to the plight of these children, to get awareness that the treatment was not enough, that there are more times than not that it is not enough and that too many kids are dying. If we don't continue to speak our child's name, then how would the world even know that there are so many kids that are diagnosed and that so many kids are more than just cancer. How would we be able to get awareness of the siblings left behind? As hard as it is to say, cancer stopped for Bryanna the day that she died. I would much rather say that it stopped because she was cured, but the reality is that it stopped when she died. But for Evey and Liam, cancer is something that they deal with every single day. It has invoked a fear in them that no amount of comfort can take away. It has put a seriousness in their life that no parent ever wants to see. It has become a daily reminder of what they lost, of what they miss every single day. It is a reminder of what I lost every single day.
Three days ago, we celebrated the 2 year anniversary that Bryanna became an angel. We did it with the love and support of the team of family and friends that are their for us. Three days ago we went to the cemetery, to stand in front of our daughter's grave and tell her how much she still means, that we love her and that she will never be forgotten. Three days ago, we had a dinner to celebrate her life and to share stories. Three days ago, I was unable to write. I was unable to share words with anyone. I was unable to cry, I just felt broken. Three days ago today was a stark reminder of what I lost. But so is every single day of the year.
This is why Bryanna's Love, Inc. is such an important foundation to us. This is a way that I am able to put my energy, my grief, my pain somewhere productive and not fall into the dark hole that calls so many of us bereaved parents and is always lurking nearby. It's a way for me to keep telling Bryanna's story. This is the way that my children can understand that they are not alone, that Bryanna is sadly not the only child to battle childhood cancer. This is my way of sharing the love that Bryanna had with so many people.
My children are faced with very difficult things in life- more than I would have ever have wanted them to have experienced. Through that, my children have all had special needs. Some a lot more severe than the other...some a lot more noticeable than the other. At the end of the day, none of that matters. What matters is that we continue to get through the day, enjoy the sunshine when we can, open the blinds and feed the dog. Through the various therapies and crazy schedules, we try to have fun and go to the movies. We spend it together, we love. We chat. We Live. We try to get through missing Bryanna. Having these special needs makes some of this a lot harder to do. It makes it a lot harder to explain and to get through. It also at times makes the feelings a lot more noticeable. But it is real. It is the painful truth of the void where Bryanna should be. It is a lot more noticeable by us that there is an extra chair at the table, and her shoes are still in the closet. It is a lot more noticeable for my kids when I hang the stocking the Bryanna picked out at Christmas and the many stuffed animals they snuggle at night.
Every single day the empty void of where Bryanna should be is noticed by us. Every single day Bryanna is loved and missed.
If ever you wonder when enough is enough. Think about a little girl at 2:14 on October 24. Think about a child who cried themselves to sleep because they were afraid to die. Think about the extraordinary pain that they endured to try to treat the one thing that we hear about the most in the clinical trial - cancer. If you ever wonder when enough is enough, remember that on October 24, 2016 at 2:14 only 3 months after her 9th birthday Bryanna became an angel. Remember that for 9 years that little girl was celebrated, her stories shared, her struggles were real and her laughter was heard.
Remember that Bryanna Rose Kitchen matters. Remember that every child that has passed matters.
October 24, 2016 at 2:14 a beautiful angel was born.
October 24, 2016 at 2:14, no more pain or fear was felt by a beautiful 9 year old girl
October 24, 2016 at 2:14, lives were shattered, hearts were broken
October 24, 2016 at 2:14 - Bryanna Rose Kitchen lost her battle to Early T-Cell Precursor Acute Lymphoblastic Leukemia.
It's been quite a while since I last posted an entry in my blog. A lot has happened since that last post. You may wonder what happened in that time that I chose not to post my thoughts. Well, simply said- I lost my voice. I lost my courage to share my thoughts. I no longer felt brave. I was merely surviving each day. I was surviving knowing that my daughter didn't survive, so I pushed through and tried even harder to get through it all. And then during our time of grief, when I was just trying to make sure that we were doing more than surviving, that we were living - judgement happened. Yes, surprisingly, a couple of people voiced their judgment and opinions in the worst way possible on my parenting. They voiced their judgment on the death of Bryanna, on the cancer. They voiced their judgment on the fire that took place now 3 years ago that started in our neighbor's apartment and stripped us of everything we owned. They voiced their judgment on a whole lot of things that struck me to the core. It stripped me of all the courage I was mustering to get up each day and put on a brave face and step out into the world. It forced me to feel the need to retreat and to trust only those closest to me. It made me feel the desperate need to suddenly shield my kids from the evils in the world...to protect them even more from the world.
But now, some time has passed, and I am at a place where I need to find a way to get past that. To trust those around me and know that sharing my grief is okay, it is safe and it is important. For anyone who doesn't know me - and as you read my blogs - please know that my number one priority is the safety and health and well being of my children...all of them. I may share a few things about stuff they do or say, but out of respect for them, I use caution on what I share. They will always be my number one priority.
So, putting all that mess to rest, the bottom line is that Bryanna died. She died after battling a horribly painful and scary disease. The only solace I get in her death is to know that she is no longer in pain or in fear. I know that she did not feel pain when she died. I know that for a fact. Now as I sit here over a year after laying in that hospital bed with Bryanna and holding her, telling her that it is okay for her to go to sleep. Telling her that we love her and that we are so very proud of her - as I laid there panicking because her body was no longer warm. As we walked out of the hospital knowing we now had to tell Evey and Liam. As we sat down with them that miserable night and told them that Bryanna will never come home - As I remember all these details in distinct detail, I am also forced to make sure I am present for Evey and Liam. I make an effort to look at the kids when they are talking to me. I put my phone down at dinner and focus on talking about silly things that took place during their day. I make a point to tell Evey and Liam that they are beautiful, that they are brave, courageous, strong, silly, kind. I make a point to tell them how much they matter, and how much I love them. Truly, with all my heart. Of all things to contend with in our life these days, that is the easiest. Evey and Liam are the light shining in the dark days. Evey and Liam have given me the purpose that I know I would not have had after Bryanna died. I'm so grateful to have been blessed with my kids.
Life is a funny thing. It really is. It is not at all like I had imagined or expected it to be. With all the challenges that each of my kids have faced through the years, and still do face, life keeps me incredibly busy in a day. I sit down at the end of the day thankful that we made it through another day. As hard as it is, I can only imagine how difficult it is for the kids. Liam has started to "get the angrys" and growls when he is frustrated, and Evey gets really upset at bedtime. Why you may wonder? Because it doesn't matter how much time has passed, the fact is that we still and will always have a hole that just can't be filled. The fact is, the kids still go to school where life goes on, but Bryanna isn't there. The fact is, we have an empty row of seats in our car that we see every day. We have Bryanna's toys and stuffed animals that are mixed with their toys, yet they know exactly whose they are. The fact is, the kids equate time with "Before Bryanna died, or after she died". The fact is, we have a bedroom that once was shared between Evey and Bryanna and is now only used during the day. We have Easter celebrated with only two kids, not three...that means two Easter baskets. Not Three. We have stockings for all three kids during christmas, but only 2 are filled. Life moves on for everyone around us, as it should. But the fact is, Evey and Liam's friends get to go home and annoy or be annoyed by their sister and they don't. It is easy to forget that grief continues even when the world keeps turning.
Yes, life is a funny thing. I try to find humor in as much as I can these days, because we have to live...but I find it interesting how different each year is. And it's not easy. But here's the thing - with this comes learning. It comes a deeper understanding of what has to happen. It comes knowledge of pain and suffering, but also of healing. With this life comes compassion and love...love like I never knew I could feel.
Life is hard. You may see me and say - Wow, you look so great. But did you look into my eyes? Because if you did, you would see life. I don't really know how to answer the "how are you question". Because when I'm okay, I'm not sure that I really am. But do you really want to hear that? For those who truly do care -I see it and I appreciate it so much. I am grateful for the people who have reached out to me and that listen. I love all of you. Life is powerful and as I sit here alone on my couch while the kids sleeps and Levi lays by my feet, I am humbled by that power. I sit back and relish in the tasks that we do everyday to live. Evey's job is to open the blinds in the house every day and Liam's job is to feed levi. Not just a scoop of kibble, but also to add his favorite wet food to it. This is there job. Because these are signs of life. This is living - opening the blinds makes us take pause and look at the deer or woodchuck grazing behind our house. It gives us pause to look at the sky and the sun, the moon and the stars. Feeding Levi allows him to thrive and be healthy...it's a sign of life. It is moving forward in our own way. They don't know all this, but one day they will. I hope that these little tasks will help them as we continue to take it day by day. I look forward to the day where my eyes say more than just survival.
In the mean time, when I am not completely busy and occupied with the kids and work, I am growing our foundation that we set up in honor of Bryanna. We want to share her love with the world, with the kids that are trying to survive just like she did. With that, I am organizing a walk/run in Maryland on 9/8/2018. It is a crazy and huge undertaking, but it feels right. I can't let Bryanna's memory fade away. I need people to know her story. I need people to know that she too mattered. The 4% in funding that we keep hearing about for cancer research is my 100%. I lost 100% of my baby girl. Hopefully as I work on Bryanna's Love we can help others and share Bryanna's love like she was meant to do. Hopefully with that, I will no longer survive, I will live. Love is a powerful thing and leads to even more amazing things. It leads to living, not just surviving. And that my friends, is a force to be reckoned with.
Last night was back to school night at Evey's school. That meant that we went to back to school night, listened to the information given and met with Evey's teacher for questions. Only Evey's teacher. We should in reality be meeting with Evey and Bryanna's teacher. We should be running from one side of the school to the other to make sure we meet both meetings. But we are not.
Last week we met with Evey's teacher. We always set up a meet and greet before school starts to help ease the transition, the stress and the nerves that come with the start of school. We started that when Bryanna was in First Grade. This year we only met Evey's second grade teacher. Bryanna did not have a 5th grade Teacher. We do not get to hear all about middle school transition and the last year of elementary school.
This Tuesday was the first day of 2nd grade for Evey.
Two years ago, we took a picture of Evey and Bryanna on their first day (Evey was in Kindergarten and Bryanna in Third Grade). It was a day of excitement and nerves and lots of stories after school.
Bryanna loving her new boots and posing with Evey and Liam on the way to school. Out of respect for Evey and Liam, I have covered their faces to protect their identity.
Bryanna First day of 2nd Grade
Bryanna and Evey first day of school 2 years ago (Evey was in Kindergarten and Bryanna was in 3rd grade)
Last year, I took Evey to her first day of school, met her class in the cafeteria, gave her lots of love and then rushed to the hospital to be with Bryanna. I still remember her face when I walked in her room...
This year, I took Evey to her first day, met with her class in the cafeteria, gave her lots of love and then went to the cemetery to sit with Bryanna's angel puppy, at Bryanna's grave site.
Please don't ever take your child, your husband, your wife or anyone in your family for granted.
September is Pediatric Cancer Awareness Month. It is a very important month...but so is every other day of the year. We need to love and be aware every day of the year. Life is short...these kids need help making it longer.
When we were in the hospital with bryanna last September, we knew that it was pediatric awareness month - but as we sat by Bryanna's side as she battled ETP-ALL, the brutal chemo therapy, nausea, fatigue, overall sickness and then septic shock leading to intubation (The first of 2 times that she required life support)...all in the month of September...I couldn't stop to think about awareness or funding or all the people who are rallying around the nation to help kids like Bryanna. I was not even remotely thinking about cancer awareness, lighting the night, lighting it up gold or any other slogan. I only focused on loving my dying little girl. I focused on supporting my two other kids (who are equally as important) who were struggling to make sense of cancer. I was trying to eat and drink something each day beyond the cold cup of coffee I got sometime early in the morning that day. I was trying to be aware of the immense exhaustion and stress that Mike was dealing with as he had to continue working so that we would not lose our clients. I was aware of the guilt we both felt when we weren't by her side, even though we knew one of us was always by her side. I was aware of that Mike would make sure my gas tank was full so that I wouldn't have to stop to get gas when I was so exhausted. I was aware of the sorrow and fear in the eyes of the parents on hemonc. I saw and was aware of the encouragement from the team when I would rock the halls with Bryanna and annoy her by singing the same song over and over. They knew that these moments were miserable and painful but so important to her. They also knew the amount of energy it took me to put on that brave and happy face and sing and encourage her as we circled the floor in her special wheelchair - reclined, padded with pillows and secured with a seat belt. It was a time where every being in our body was praying for a miracle, still believing that she would be able to beat this.
September was a month where we were already adjusted to our new routine. We no longer were foreign to the staff, to the hospital or to the treatment. We made friends with the janitors and the parking attendants. We often found a special note from the janitor reminding us to smile and to take care of ourselves. We would find our cars parked in the closest spot to the door by the elevators that we would use after using valets on the mornings that there was no parking. This was not by chance. We would have conversations with the lady at registration about our kids, we would give updates to people we met in the cafeteria. We were surviving. I would show a brave and encouraging face to Bryanna, get in my car and scream and cry. I would compose myself once again and be brave in front of Evey and Liam. Cancer meant that the short weekend that Bryanna was home, Mike and I stayed up literally all night to ensure that she got her medicine. Cancer meant that this same weekend, we missed my brother's wedding. Cancer meant that we would double check the dosage that we drew up to make sure that that narcotics, anti-nausea and every other one of the 15 drugs prescribed to Bryanna was given correctly at 1 am and 4 am and all throughout the day.
Cancer is telling Evey and Liam that Bryanna is going to beat it, and that she won't die. Cancer is being confronted by the kids demanding to know why she died when I promised she wasn't going to. Cancer is not finding the right words, not feeling like you did enough and not being able to make it better. Cancer is telling people that you are okay, but really none of us are.
Cancer is exhausting-scary-messy-painful-feeding tube-TPN- potty troubling- vomiting- cleaning - requiring bravery disease. That is the face of cancer. Cancer meant that while I was waiting for Mike in the hall by the cafeteria, a random woman walked over and gave me a hug...because I was leaning against the wall crying...not caring who saw me.
Cancer is realizing that someone stopped.
Cancer affects the patient so greatly that should you survive, it is absolutely life changing. Had Bryanna survived, she would have been met with severe side affects such as a certain infertility, secondary cancers, and had she survived long enough to get radiation - she would have been affected intellectually. Cancer is not a disease that you take a pill and move on. It is a life changing, soul searching long term ordeal. It affects every part of your being. It is watching your daughter realize that she is losing her hair. It is hearing your 9 year old daughter say she knows she is going to die. It is hearing your child scream and beg for the pain to stop. Cancer is watching your child beg for the nurse to hurry with her sedation before her weekly IT because she knew it was the only way she didn't feel pain. Cancer is watching your healthy daughter become frail and pale. It is watching the life go out of her eyes, it is holding her in the middle of the night because she is too scared to be by herself. Cancer means that you run across the hospital down two floors all the way to the cafeteria 5 minutes before it closes for the pizza that she is craving. You go because you would do anything for her, and this is the first time in a week she asked for food. Cancer means that you end up eating that pizza cold across the room from her because she can't handle the smell of it and no longer has an appetite. Cancer means that Mike goes to the ends of the earth to get cottage cheese when that's what she was craving - and when no one would help him, he went into the kitchen to ask the guy to give it to him, which he of course then purchased. Cancer to a parent means you do what you have to do to make your child okay. Cancer meant that the cottage cheese was put in the refrigerator and never eaten because she couldn't stop throwing up. Cancer means that you can't hold your baby girl because you are so run down that you got sick. Holding your child at that point now meant that you could literally kill her from the virus that you have.
Cancer means that your little girl goes from looking healthy (even though you knew something was wrong)
... to being so sick she couldn't sit unsupported...
So sick that she only had energy to draw a circle...one time.
and so sick that she couldn't wake up when super heroes came and visited.
Now we just have pictures.
We just have memories. Memories that we hope to never forget because we know we can never make any more with Bryanna. This is what cancer means.
Now, as I sit here in my kitchen and not in the hospital, with Evey and Liam making a fort without Bryanna...as I sit here thinking about cancer awareness, I am painfully aware what pediatric cancer is. I am painfully aware when I go grocery shopping, when I go back to school shopping and when I prepare the kids for a new year of school. Last year - Bryanna was in 4th grade...and the entire school year felt like an eternity. Cancer meant that last summer she was diagnosed, and then during the school year she was put on life support twice and then died. Cancer meant that we still had to get Evey and Liam through the rest of their school year. Cancer means that we still have to pick up the pieces as school starts in a few days knowing that everyone else has moved on, but we still struggle. She would have been in 5th grade. Not yet a year has passed since she has passed away and yet Cancer has made it so we are only preparing two kids to advance a year. Cancer has made it so Mike and I weigh the emotional risk of watching certain movies or going to certain places. Cancer means we do not have our beautiful Bryanna here with us.
Cancer means that we need so much more in funding...more than 4% to find better treatments and cures for pediatric cancers...and especially those such as ETP-ALL which has very little research and virtually no specific treatment protocol like AML and T-Cell ALL. This means that as much as I know what this month is, I am also painfully aware what cancer is every single day of the year. But, I am also aware that without awareness, we as a society will never fully understand the magnitude of their impact on these children. We as a society can help change the lives of these children. Because of awarness and national efforts, parents can focus on their kids and not worry about going gold. I am miserably aware that it didn't work for Bryanna...but let's continue to be aware of what is needed and work together to help other kids...No kid should have to go through what Bryanna did. No kid should have to suffer and feel the pain and fear like Bryanna did. No child should ever have to visit their sister's grave site or look for signs that she is still with them.
Cancer is isolating yet we are never alone in this. It's tough but it's not enough. We need to be aware. We need to kill the cancer so it doesn't kill our kids anymore. So, when I can no longer avoid the grocery store and I prepare myself as I get up to the register and am asked every single time if I want to donate to pediatric cancer, and as I watch the St. Judes commercials that are a constant reminder of what Bryanna went through (only they don't show the dark side of it), I remind myself that it is because of everyone coming together that one day we will have a cure. It is because we go gold in September every year that more people are aware of kids like Bryanna. It is because of this that the parents do not have to think about going gold in September when they are in the hospital with their child. It is because of this that folks are more aware of the lack of funding. People are more aware that kids die all the time. Kids like Bryanna. People become more aware that siblings like Evey and Liam are left behind. All because of cancer.
It is because of this that I hope that one day there will be no cancer.
We have had a tough week this week. I'm not sure what the significance of this week is beyond the fact that it would have been the week after Bryanna was initially admitted into the hospital. At this point she would have had 2 Intrathecal chemo (Chemo in the spine to target her central nervous system) and at least 9 days worth of chemo and steroids on top of that. This is when her hell really began. The pain, the suffering, the fear...it didn't stop once she was admitted...it only just began.
It's interesting though - as we struggled this week on various levels, we also had various signs that Bryanna was with us. As Mike and I put the kids to bed one night, we talked about Bryanna and her star. We talked about missing her but that she was here with us in our hearts. As sad as it was, there were no tears that night but an understanding. A belief that she truly was with us when we needed her. We read to the kids, turned their music on, gave them kisses and hugs and came back out to the living room. We were met with a odd sound - one that we couldn't place. We thought it was our air purifier and so we shut it off. It didn't stop. We turned the TV down, it didn't stop. Then it hit me. It was my purse buzzing. It was Buzzy, buzzing in my purse. My purse had not moved, fallen or shifted since it had been set on the floor earlier that evening. Nothing changed from the time that we had taken the kids to bed to the time that we came back out to the living room. And yet, buzzy was buzzing away. For those who don't know - buzzy was a tool that we used to help distract and get Bryanna through some of the scariest treatments. It is a bee shaped little plastic thing that you turn on and it buzzes hard. It has only gone off on a few occasions since she passed. When we got back into our car after picking up her remains - as we sat at our usual rest stop eating taco bell on our way to Massachusetts, when we were having a tough time and everyone was a mess when we got home from camp....just random unexplainable times. It gives me goose bumps.
On our way into our house from our car after camp the next day, there was a beautiful yellow butterfly following us. It kept circling us and made me think. What if? When I mentioned it to Evey she said something that made me stop in my tracks. That same day at camp, the same colored butterfly kept bugging her. It kept circling close to her head and flapping it's wings next to her ears. As she said, she thought it might be Bryanna, but it wouldn't stop bugging her and it was annoying. I laughed when she said that and reminded her that Bryanna and her used to annoy each other at bedtime and many other times during the day just because you knew you could. But even after that, you guys were best friends and loved each other so much. What if that was Bryanna saying I'm here with you...and I'll annoy you like I used to? What if?
This week, as I was leaving camp, a little girl was being greeted at camp. Everyone was so super excited to see her. They said (Spelling is likely different but pronunciation was the same) "Bryanna!! We missed you so much! We are so happy to see you Bryanna!". I understand that there are many special Bryanna's in this world. But the timing of hearing that was gut wrenching. I don't often hear the same pronunciation of the name so it made me stop for a moment. Then I carried on and was so grateful that that little girl got the greeting of a lifetime - just like every other kid that went through those doors. The smile that child had hearing her name reminded me of my Bryanna. They made sure she felt special. They made sure she knew she mattered. They made sure she felt loved.
There are so many ways to justify many of the things that happen during our days. So many reasons that a butterfly might be flying around us, buzzy may have gone off, interesting reflections are seen from her headstone. So many things that can be scientifically or logically explained. But then again, can they? What if the explanation defies science? What if there was more to it? What if it truly is a sign?
What if we could see the invisible. What if we could see what we could feel. What if our beliefs and thoughts were so innocent and pure like children...children who see so much more than we see. What if we could put our insecurities aside and just let things happen. Would we see more than we expect? Would we feel something more powerful than we could ever imagine? What if?
Today, the kids thought they would quiz me on their favorite things in life. Talk about loaded questions. They are never the same. Seriously...their favorite things are NEVER THE SAME. How is a mom supposed to keep up with their never ending thirst for a new love? Don't get me wrong - I appreciate that they like so many different things...all the time, but it would be easier if Evey had that one lovey or that one favorite thing. Always keeping me on my toes.
So, when asked what her 4 favorite things she wants to be when she grows up, and her 2 favorite foods - I did the best thing I could think of. I said, I obviously know what they are, but I think you should tell me what they are so you can't change your mind when I say it. Ummm...save me please.
So she said...that's fair. My favorite things are: 1 Unicorns (obvy..everyone should be a unicorn), 2. Minion (well, that's only natural), 3. Firefighter (totally didn't see that one coming) and last but not least a Dolphin. (That makes sense, since we live in the water). She was so excited that I was thinking all the same things. Thank goodness for the all knowing mommy sense. phew. Then it went to her loveys (She doesn't have nor has she ever had a lovey)...so we started it again. Thankfully, I was "Thinking" the same thing she had said. Evey had stars in her eyes.
Liam and I went through the same process. I am so thankful for my all knowing thoughts, because obviously I knew he wanted to be a chocolate covered minion. (seriously...how???).
Our silly moments like these gets us through the tough moments like this week. I am so grateful that I can still give the perception that I know everything...I know that the day will come when they will think that I know nothing. So for now...I'm going to live each moment and enjoy it. I'm going take the time to think about those special moments when the butterflies flutter around our ear and buzzy goes off. I'm going to embrace all the moments that make us say "What if?" I'm going to live in the love that the kids show and continue to be grateful and blessed that I still get to physically hold them and embrace and show that love back to them. I'm going to let it continue to be okay for us to stop and say "What if?". We are going to continue to embrace the signs that Bryanna may be with us when we need her. She is no longer in pain, and no longer in fear. What if she really was here with us? What if that really is a sign? What if?
