The Little Pink Sweatshirt

Gracie. Five years without her. How is that possible?

January is a hard month full of flashbacks. It was 5 years ago that things got really bad. Gracie was very sick and as much as I hate to say it, it was getting scary and a lot for me to handle. I was the parent who pretended everything was ok, but inside I was falling apart. I knew what was coming and I didn’t want to admit it or face it. When Gracie was first diagnosed I spent every minute of the day and night with her. In the hospital, at home, clinic visits… you name it I was there. But her last few months were so scary that I was afraid to be alone with her at night for fear something would happen. So I did day duty and Geoff took night duty every night while I went to the RMH to sleep and be ready for what the next day would bring. I say I went to the RMH to sleep, but that’s not what would actually happen. Each night I would leave the hospital and head to the house and as soon as I would get to the house I would have a panic attack that I left and that something was going to go wrong. I would call Geoff and he would reassure me that everything was OK. I would then walk to the kitchen and try to eat something, but two bites in and that anxiety would hit again. I would head back to our bedroom at the house and call Geoff again. Once I knew everything was ok I’d watch some TV for a while, hoping to fall asleep, but every night my eyes would wander to the same place. The bed post on the corner of the bed. On that bed post hung Gracie’s little pink sweatshirt. She didn’t need it in the hospital and the room was so small we would keep it and lots of other belongings in our room at the RMH until she could leave the hospital. Every night I’d look at that little pink sweatshirt and tear up. What if she dies and there is no one to fill the little pink sweatshirt? What will I do if she’s not here to wear it? The amount of pain and tears looking at that sweatshirt and thinking about the future and her not being here to wear it was unbearable. I would finally calm myself down and convince myself that everything was going to be ok and to not think about it.

This is exactly what happens and what I have to tell myself every time I start thinking about Gracie’s death. Most of the time I force myself to think about the good times, the great memories and the fact that I was lucky enough to be Gracie’s mom and enjoy the little time I had with her. But there are times when her death and some of the hard, terrible memories of suffering and sadness arise. January 17th is one of those days. As much as I want to force myself to be happy and remember all the good times there has to be a time when I let myself think about what happened and be sad. I can’t hold that in forever. I am truly thankful for all the support and love that surrounded my family that day, but the fact that she died that day tends to overshadow that. To this day I am still in shock that my baby died. To this day I still think of that little pink sweatshirt hanging by it’s hood on the bedpost and all those scary thoughts and feelings I was having. I still ask why. I still cry. I still don’t understand how this could happen. I still think of Gracie every minute of every day. And I still have that little pink sweatshirt hanging up on our coat rack at home. Right now it is buried under all of our coats, but every spring when we slowly put our winter coats away it’s still there. I couldn’t bare to put that sweatshirt away in the past 5 years and to be honest it will probably be there for the next 5 years. As much pain looking at that little pink sweatshirt on the bed post at RMH brought me 5 years ago, it now brings me a sense of comfort. A sense that she is still here with us and that she may not be here to fill it with her little body, but it is instead a reminder of her love and spirit that fill us each day and remain in our home.

The saying “time heals all wounds” should never be associated with someone who has lost a child. It has been 5 years without Gracie in my world and there will never be a time that I am still not in disbelief about her death. Five years later and I go numb when I think about what happened. Sometimes it’s the only way I get through it. Five years later and there hasn’t been and will never be a day that I don’t yearn to hold my Gracie again.

Gracie. It’s January 17th again. The day you died. I miss you, I love you and I will always keep your little pink sweatshirt hanging in our home.

Time Flies…Merry Christmas!

img_1800Time Flies
It’s been awhile since I’ve written in my blog! It’s been on my mind, but life has been busy and the days are going by so fast… I swore Thanksgiving was yesterday and now it’s almost Christmas! Last time I wrote here was a few weeks before my due date. I told you all that I would let you know when our baby arrives and what we had. Well here we are 4 ½ months later and I’m just getting around to it! On August 1st we welcomed a baby GIRL into this world. Ava Grace arrived early afternoon on a Monday, a healthy baby weighing 8lbs. 12 oz.! As most of you know we did not know what we were having and it was totally worth the wait. It’s already such a magical moment watching a new life enter the world and when they announced it was a girl it made it even better. It was the best, happiest surprise ever!

Tending to our new baby and family is obviously the reason I haven’t had a chance to write in a while. Ava is a great baby. She brings us a lot of joy. She has a smile that will melt your heart, big blue eyes, and hair that will just make you laugh. She actually looks just like her sister did when she was a newborn. I love having a baby in the house- the cuddles, the smiles, the belly laughs, the cute clothes…I could go on and on, but as we all know life isn’t picture perfect. It’s been an adjustment and of course there are some challenges that come with a newborn….feeding schedule, sleeping schedule, fussiness, spit-up, lack of sleep, losing the baby weight, the fear that I’m going to mess up somehow or the constant concern that I’m just not doing it right at all. I’m pretty sure all moms go through those changes and challenges once having a child, but for our family it’s a little bit different.

There are more challenges that present themselves when you have a new baby after you lost a child. I am definitely more paranoid about EVERYTHING! Every little ache or pain Luke or Ava has I am afraid they have cancer, or every time Luke won’t eat his vegetables or eats too much microwave popcorn, I am afraid he will get some other disease. I worry that there will be something wrong with the baby, and I fear that I am not strong enough to go through such heartache again so soon. I fear that the baby will have something wrong with her, or as happened with Gracie, she’ll be perfect and normal and then one day that will all change. Even though we’ve been told Gracie’s cancer was not genetic I still find myself feeling Ava’s belly and wondering if any sign of distress is cancer. At first I thought I was nuts and called the counselor we visited for a year after Gracie passed to see if I was truly losing it. She reassured me that these feelings are normal and that Ava is probably going to visit the dr. more than most babies because of what we went through. I realized that I’m not alone and I’m not the only one feeling this way. Luke has also expressed his concern of the same feelings. I’ve been able to reassure him that everything will be ok and that we all hope that doesn’t happen to Ava or him or any child. We can’t live in fear all the time, but can expect it to pop up every now and again. It does remind us to live life to the fullest and enjoy every moment with those we love.

I’ve also heard people use the term “the replacement child”. Ava is not my replacement child! It’s such a cruel term, that suggests a parent wipes out the agonizing grief of the death of one child with the birth of another. For our family that is not true. I can say that losing a child is like losing part of yourself. You learn to live with it but you never get over it. But Ava did not replace Gracie, she is a distinct member of our family. She is her own person. She is our 2nd daughter, another sister to Luke, the 3rd granddaughter and niece on one side and the 2nd granddaughter and niece on the other side. Yes I’ve called Ava, Gracie. She looks like her and acts like her, but they are sisters and that is going to happen. We wouldn’t think it was weird or not talk about the resemblance or confuse names if Gracie was still here so it shouldn’t be uncomfortable or weird to talk about it with Gracie not here. We need to remember that they are sisters, but they are not the same person. Gracie has her life story and Ava will have hers.

I also think a lot about the fact that Ava will never know Gracie. It hurts to think Gracie will be like a stranger to Ava and there won’t ever be any pictures of Luke, Ava and Gracie together. Luckily we talk and share pictures as a family about Gracie a lot. What I can do is try to make sure Ava knows all about Gracie and how she loved to laugh and have fun, and so much more.

The challenges we face also make me a better parent. Losing Gracie has changed my approach to parenting in a variety of ways. I am so much more willing to stop and do the little things like cuddle or read books or play games. I am much more patient and less rushed. I am trying to soak up every bit of Luke and Ava’s childhood and enjoying the milestones that both of my kids meet at their age.

Throughout all of these changes and challenges, I am noticing that time really does fly. It’s been almost 6 months since I wrote a blog, Thanksgiving came and went, one day I had a newborn and now she’s 4 ½ months old, Luke was just starting kindergarten and now he’s a 3rd grader, and it’s been 4 years since I’ve spent a Christmas with Gracie… Where did that time go? As we approach the holidays remember how fast they will go by and take time to be with your family, friends and loved ones, making memories that you will look back on. Remember time flies, but the memories you make during that time are amazing, beautiful gifts to be cherished.

This year I’m sure that our gift was handpicked from heaven by Gracie… Merry Christmas!

September – Childhood Cancer Awareness Month!

sara lawerance 2011 056September. Childhood Cancer Awareness month. I sat here and looked at those words for a long time thinking “what do I want people to know about childhood cancer?” As I think about this question I think about my family’s experience and our story with cancer, as well as so many of the families we help that are facing this diagnosis. So this year I decided to give you the grueling statistics and facts again -because they are important, but I’ve realized they are also easily accessible for people to find and educate themselves on. If you want to know the facts on childhood cancer you can Google them anytime. But what you cannot Google is the impact or feelings of parents and their families who have or had a child with cancer. So for that reason I will share the facts with you at the end of this blog and will take some time this September to share a compiled list of what I want you to know about how childhood cancer affects the parents and/or family.

  1. First let’s state the obvious: childhood cancer sucks. It is unfair, it is wrong, it is horrific. No child should ever have to go through this diagnosis and no parents should ever have to watch their child go through this.
  2. Most parents with a child with cancer is not as strong as you think. I know that I’m not as strong as you think I am. As a parent, cancer is one of the worst diagnosis you can hear for your child. The word “cancer” sends a parent into panic mode. It is unknown territory, something no one wants to enter. I can’t tell you how many times someone has said to me “I don’t know how you did (or do) it, I just couldn’t” or “you’re so strong and brave, I couldn’t handle it.” Yes you could. But just like me and everyone else you don’t want to. When your child is sick you step up to the plate and take care of them. There is no other choice. You have to be strong and brave because they need you to, not because you want to. Just because I keep my composure doesn’t mean that I don’t break down and cry. I do so most times when I’m alone or in my car. I do hide my pain in front of my children and family at times because I needed them to draw strength from me- the person who loves them more than anything or anyone. But you should know that as many times that I can stay strong, there are times when my family and children have and need to see me sad because sometimes I need to draw strength from them. We are a team and our love and strength for each other gets us through everyday.
  3. A family with a child with cancer is not privileged. It brings me great sadness when I hear families we help through the foundation worry about taking “too much” because of what others say or think about receiving some amazing experiences or gifts from the community. I’ve heard people talk about how lucky we or these families are to receive such donations. Lucky? Really? My family and I’m sure every family we’ve helped would trade every trip, every cent, every gift to have our children never have to go through this. Most have no idea how a parent with a child with cancer feels and we would never wish that upon our worst enemy. The words “your child has cancer” will never sink in. Which leads me to #4.
  4. We are not the same we once were. I cannot say I’m the same person I was before. I am forever changed and look at life in a very different way than before Gracie’s diagnosis. Life and all it’s moments become more fragile and precious. There is no judging, for you truly don’t know what anyone is dealing with unless you walk in their shoes. Even though a parent is forever changed we still need our friends to make us laugh, to be there when we cry and we still want to be there for them in return. Because after all, we are still human.
  5. Childhood cancer is not all smiles and fun. On social media we often see pictures of bald kids receiving treatments with smiles on their faces. We even see kids who don’t lose their hair and we think “wow they must be ok and doing great”. They might be, but I guarantee you that behind those smiles there is a different story. I want you to know that behind those smiles (which can be hard to catch) are tears from surgeries, accesses to ports, procedures, anesthesia, chemo treatments, needle pokes, blood transfusions and so much more that can lead to a very sick child and very worrisome parents. It saddens me to think this was what Gracie knew her life as. I often wonder if she thought this was a normal life? Behind those kids, the pictures you don’t see too often of are the parents. The parents now face each day with Dr. reports, hospital and/or clinic visits, lists of drugs and the side effects they cause that are being given to their child, blood levels, potassium levels, WBC and levels and acronyms of so many different things you never knew about. The questions are endless for a parent- Does the child have a fever? an infection? Should they be around other kids for risk of getting sick? Can they swim with their port? Can they go to school? As a parent your life is now filled with worry- each and every minute while your child is receiving treatment. So although our children and ourselves may look ok in that facebook picture… there is a lot you don’t see or know about us.
  6. This September let’s not forget how wrong childhood cancer is in a child. Let us not forget the pain and suffering these children experience from their tumors, surgeries, chemo treatments, and radiation. Let’s not forgot that we lose way too many of these children, and the devastation it brings to their parents, siblings, grandparents, aunts, uncles, friends and community, or the loss to our world of these special children, that I believe would make it a better place.

As promised here are some facts and statistics about childhood cancer:

  • Worldwide, every 3 minutes a child is diagnosed with cancer.
  • Cancer is the second leading cause of death in children (after accidents). About 1,250 children younger than 15 years old are expected to die from cancer in 2016.
  • Childhood cancer causes around 90,000 deaths per year and in high-income countries is the second highest cause of death amongst 5-14 year olds.
  • Childhood cancer is often detected too late because parents and health workers do not have sufficient awareness of the warning signs.
  • The latest drug developed for childhood cancer in the US was 30 years ago.
  • Children/adolescents with cancer suffer as a result of severe and toxic treatments which cause lifelong health issues and challenges.
  • The treatment and care of childhood cancer requires a whole interdisciplinary team, to provide not just the medical treatment of the child, but also the psychosocial support for the child and the whole family.

I am so thankful to my friends and community for their ongoing support. Five years later you all continue to amaze Geoff, myself and our foundation board members with your generosity, donations and support! This September we ask you to continue to take this awareness month and do something, take action that will help us find a cure or help a family. Make a donation, come to the Night of Grace, run a race, have a lemonade stand, host a dress down day at work, cook a meal at The Ronald McDonald House, write your congressman about funds for childhood cancer, help a family who has a child with cancer. Can’t think of anything to do? We’ve created a list of ways you can help us help others. Check out our website (www.amazinggraciesgift.org) under “50 States of Grace” or email me and I can give you ideas.

A big thank you to those who are already taking action and raising awareness. Stay tuned for pictures of our community Going Gold!

A Rainbow Baby

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We’re having a Rainbow baby.

Last September our family went to the Double H Ranch for a weekend retreat for families who have lost their son or daughter, sister or brother. It was this weekend almost a year ago that I first heard the term “rainbow baby”. We were talking with another family one night who had lost their 2 year old son 11 years ago and they introduced me to their rainbow baby- their 8 year old daughter. I remember asking what a rainbow baby is and they explained that it was a baby born after the loss of a child and that it helps families find hope and faith in the future after suffering such a devastating loss. They explained that parenting after a loss is one of the most exciting, worthwhile, happy, meaningful, things they could do with their lives. When I asked why they call a baby after a loss a rainbow baby they explained to me that a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison. This is so true for our family. For those of you who haven’t heard the news yet… we are expecting a baby in 3 weeks! We are beyond excited for the arrival of our 3rd child, our rainbow baby. But although there is much happiness in this news and in the term “rainbow baby” there are also many fears, anxieties and of course questions or concerns from others about our choice of having another baby.

One of the fears and statements we often hear is “ I hope this baby doesn’t get cancer”. Guess what? I do too. But I also hope you don’t get cancer and your child doesn’t get cancer and that no child ever gets cancer again. We have had genetic testing as well as many other tests and the findings were that Gracie’s cancer was “bad luck” (great for us deciding to expand our family, but a tough finding for the reason my child died). Our chances of our children having cancer are the same as yours. But I will say that still scares the crap out of me. If anyone knows that “rare” can happen, it’s us. Even if it’s a 1% chance- it’s still there and it’s scary. I know where my mind is going to wander when this baby gets sick or has a full, hard belly after eating… So when you say “I hope this baby doesn’t get cancer” to me my anxiety increases and it helps solve nothing. I will always pray that my children don’t get cancer and remain healthy in every sense, and I will pray the same for your children.

Another phrase I often hear is “I’m so glad you’re having another child, now you’ll have a family of 4 again!” No, we will now have a family of 5. We are not replacing Gracie. Gracie was here and will always be a part of my family. We will still talk about her and let the baby know they have a sister in heaven. I will now have 3 kids.

So here we are 3 weeks before our lives will change once again. I’m feeling good, tired, emotional, hot, moody and excited- just like any other pregnant woman! We are ready for our little miracle, our rainbow baby because after every storm there is a rainbow of hope……that rainbow of hope will be here August 1st.

If you get a chance please send some thoughts and prayers to our family this day for a healthy delivery and healthy baby! We will share the news and post pics when Gracie’s brother or sister arrives!

Golf Tournament May 7, 2016 Speech

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Welcome to the 5th annual Amazing Gracie’s Golf Scramble! I honestly cannot believe that this is our 5th tournament. Four years ago our family experienced the unthinkable. Our daughter, Gracie passed away from cancer. We were sad, angry, shocked and desperate to do something to keep her memory alive and to help others. We gathered a committee of family and friends and they helped us grieve Gracie’s death and gave us ways to keep her memory alive by starting a foundation. I remember sitting in our living room with our current board members in March of 2012, 2 months after Gracie’s passing and deciding to begin this journey and start with a fundraising golf tournament. We had no idea what we were doing but we all worked hard and quickly to get a golf tournament ready in 2 months, and we did it! In May that year we held our first golf tournament. The weather was beautiful, we had 36 golf teams, a wonderful team of volunteers, great auction prizes and we raised an amazing amount of money to help others. At that point in time I didn’t know what was going to happen with our foundation… would it be successful, would we still be having golf tournaments in 5 years? Well the answer was yes! Here we are 5 years later with beautiful weather, over 36 golf teams, the same wonderful volunteers and auction prizes and still raising a great amount of money to help others. I am so thankful that the success of this tournament and our foundation has not changed- the smiles, laughter and support from all of you still exists 5 years later and it is amazing!

Over the years we have tried to come up with a good motto for our foundation and last year it finally came to us- Be Amazing. This year there was no need for me to think of something new as it continues to perfectly suit our foundation and all of you, our supporters.

So with that said- I want to Thank you for Being amazing . I’m not sure if you realize how amazing you were today: We had over 160 amazing golfers, over 15 amazing volunteers, over 100 donations from some amazing people and businesses, and some amazing sponsorships totaling over $10,000

Not only are our supporters amazing, but so are the people and places we help. These places and people are what inspire us each day. So with that said please:

  • Be Amazing like the RMH of Albany. A place that provides comfort, hope, love, and support for so many families. The RMH now has more room for love in their new house and can hold up to 25 families. One of those rooms was built in Gracie’s name. It is beautiful, warm, comforting and totally amazing.
  • Be Amazing like Jack Day and his family. Jack battled cancer for many years and passed away 1 year ago this August. His family is keeping his memory alive and educating others on melanoma and sun safety through an event called Jack’s Ride. Please donate and help out with this amazing cause also!
  • Be Amazing like all the kids who are so bravely fighting for their lives and also BE Amazing for the children and families our foundation has helped:
    • Be Amazing like Angela who is 10 years old and is battling neuroblastoma.
    • Be Amazing like Barrett who is 3 months old and has been in the hospital since the day he was born with complex congenital heart disease.
    • Be Amazing like Catherine who is 18 months old and is battling neuroblastoma.
    • Be Amazing like Brendon, a 15 year old who recently passed away after battling a rare carcinoma.
    • Be Amazing like Leah who is 5 months old and has just been placed on Hospice with end stage renal failure.

And lastly, my motto and what keeps me going on a daily basis – Be Amazing like Gracie.

Thank you for the past five years. Let’s keep it going and make it to 10 years!

My Birthday Girl is Dead.

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My Birthday Girl is Dead

April. The nightmares have begun. Not your typical scary monsters or gruesome scene nightmares, but nightmares that are filled with uncertainty, a loss, a feeling of emptiness and full of worry for my child. The other night I woke up in a panic, a tight feeling in my chest and tears in my eyes. In my dream I couldn’t find Gracie (even though deep down inside I knew she was gone). I thought I sent her to a babysitter I had never meant and I sent this babysitter an email asking where my daughter was because I wanted to come pick her up because I hadn’t seen her in a long time( I know- really strange!). When I got to work the babysitter had called and said she didn’t know what I was talking about and that she hadn’t seen my child. I got off the phone and looked at my co worker and couldn’t speak because I was so scared, but mouthed the words through a tear filled, fear stricken face- “I don’t know where my daughter is….” And then I woke up and was so sad and scared because I truly don’t have any way to know where she is…. And that scares me. I believe she is with God in heaven, but I just wish there was a way to absolutely confirm this- a call, an email, a “hey, were up here in another world and were doing fine”, but I have nothing except my faith. And when certain important days come up like her birthday or the day she died it’s so hard, I miss her so much and my faith waivers. I just need a sign or something to tell me it’s ok. I so wish Gracie would come to me in my dreams, but instead I get woken up with nightmares of wondering where my child is.

Why do these nightmares start in April? Because it’s her birthday month. I should love April for the simple fact that my daughter was born this month. I should be planning a 6th birthday party for her- deciding on a theme, where to have a party, who to invite, what kind of cake and so much more. But instead I face April with anger that Gracie will never have a 6th birthday here with us. Anger that I only got to spend one birthday with her. Anger that she will only be known as a 21 month old forever. Anger that cancer took her life. And anger that right now all I hear and read about is our presidential candidates spending millions on their campaign. Just this morning the news reported that 1 candidate who is trailing is expected to spend 44 million this month to try to beat his competitor. Really? My daughter doesn’t get to have her 6th birthday because the money needed for research isn’t there. But you can spend millions on politics? Ugh, what a sickening world we live in.

My birthday girl is dead and that’s an extremely hard thing to celebrate. I won’t share or show my anger or sadness with you when you see me. It comes at night , in my dreams or when I’m alone. It’s hard to not be angry, sad or depressed. But I have another child and one on the way who don’t deserve to see me angry or sad over this. But my family needs to celebrate in some way and we need to do something for Gracie. It would be easy to say let’s forget the whole day and go on with our lives. But that would be pretending that nothing ever happened and what good does that do when we pretend nothing happened? As angry as I am, I want to do something. I want to do it for her. I need to do it for her. A birthday party for a little girl who will never open presents or blow out her birthday candles we will never have. But we will acknowledge April 14th as a day we will forever be grateful for. I’m not sure I could ever see it as a celebration… how could I when the birthday girl is dead? But we will do something amazing in her name and honor on the day we were blessed to welcome her into our lives. There will be tears of sorrow, but there will be smiles filled with love knowing she was in our lives and continues to inspire us to help others every day <3.

As I am writing this on a snowy day in April and thinking about how extremely rough her birthday is and how angry and sad I am, and as I begin to question my faith… I get a sign. I happen to wipe my tears and look out the window and on a snowy branch I see a bright red cardinal just hanging out. So I look up the meaning of this and it said, “A cardinal is a representation of a loved one who is passed. When you see one, it means they are visiting you. They usually show up when you need them the most or miss them. They also make an appearance during times of celebration as well as despair to let you know they will always be with you. Look for them and they will appear.”
My anger and sadness are slowly melting away…. Thank you Gracie. Happy Birthday my little girl <3

Four Years

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The picture above is my baby’s heart, Gracie’s heart. It was given to me from one of the best pediatric surgeons in the nation at Sloan Kettering in NYC 4 short years ago, and it has been hanging on my fridge ever since. You’re probably wondering why he gave me a picture of Gracie’s heart. I know I questioned it when he gave it to me. But I now know why he gave it to me and why this picture has more meaning than anything else I have hanging in my house.

Four years ago this January, Geoff, myself, Gracie and one of my best friends headed out early one morning for a very important, life changing doctor appointment at Sloan Kettering in NYC. We were going to see if this doctor could possibly save Gracie’s life.

Gracie had been on a very high dose chemotherapy after her tumors started growing again and the clock was ticking on if and when the tumors in her body would start taking over once more. Her only option for survival was to shrink the tumors so that we could remove them from her liver and resection it. This was the plan from the beginning- receive chemo, shrink the tumors, surgery, and more chemo or radiation. Sounds simple, but it was not for our Gracie and the type of cancer she had. There had already been setbacks before our appointment, but our Gracie could not hold on much longer. We had to go see this surgeon and hear his answer ourselves on if he could help Gracie and our family.

We arrived at Sloan Kettering early in the morning and navigated our way through NYC to find the hospital and our answer. As we entered the pediatric floor I was overwhelmed. It was very large and full of patients. I thought to myself, this is one of the “big” hospitals that so many kids fighting cancer come to for answers. I wonder how many get the answers they’re looking for. We all sat in the waiting room and watched the kids play, parents wait with worry on their faces, and nurses and doctors come and go through the door that led to the patient rooms. I sat and prayed that we would go through that door and receive a miracle. After some time it was our turn to go through that door and we were brought to a patient room. We all squeezed in and waited for the doctor. The doctor walked in and said hello and I immediately started to cry. Everyone looked at me, wondering why I was crying when the doctor hadn’t even said 2 words yet. I didn’t say it at the time, but I knew before he said a word what the answer was. I knew he was going to say those 6 little words that no parent ever wants to hear and I just couldn’t hold back my tears. The doctor we met with was a surgeon so bedside manner was exactly what you would predict. He did his job, was to the point, reviewed the scans and slides, tried to examine Gracie (who was very fragile at this point) and finished with those 6 little words “there is nothing I can do”. He was firm with his answer and we all knew there was nothing we could say or do to change his mind. The surgery was too risky and would most likely not cure or rid her body of the cancer. He then looked at me and gave me a picture of a scan telling me it was my daughter’s heart and he thought I should have it. That was it. My daughter was going to die.

But why did he give me a picture of her heart and why is it still hanging on my fridge 4 years later? I realized later that picture was his way of showing he cared. He looked at Gracie’s scans and reports before we even got there and he also knew the answer he had to give us. He knew my daughter was going to die and he wanted to leave us with a picture of a very important piece of her, her heart. The central or innermost vital part of her body that was so full of love and so very strong and healthy. This surgeon gave me much more than a hug from him or any kind words could give me. He gave me a picture that will remind me forever that my daughter had a big, beautiful heart that lives on in myself and my family and friends. I know that we will keep her heart beating in ours for years to come.

Honestly, January hurts. It’s been 4 years since they told us there was nothing more they could do and 4 years ago on January 17th she died. I miss her more than anyone could ever imagine. But when the pain gets to be too much I walk to my fridge and look at this picture of her heart and it reminds me she was here, she loved us with all her heart and she will forever live in my heart.

I love you Gracie. Happy 4th angel birthday.

Let there be Peace on Earth

photo 1-6Stressed. Is anyone else feeling this way? My stress is different this year than in years past. I’m not too stressed about shopping and cooking and the hustle and bustle of Christmas. Instead my stress is due to fear. I know I may sound crazy but I’m scared. The recent acts of terrorism and violence leave me feeling worried and scared for my family, friends and for our world.

I was walking Luke to school the other day and had a complete panic attack as he walked through the school doors. I believe his school is very safe, but my mind still worries and is full of what ifs? The sad and crazy thing is this doesn’t just happen when I drop Luke off at school. I find myself feeling anxious and constantly on the lookout when I walk into a store, the bank, the shopping mall, work, the doctors office and even church. What I have realized lately is that it’s ok to have a watchful eye and to be safe, but I need to find a way to not let it consume my day, to not let it make me so stressed. That day I left Luke at school my fear set in and I thought to myself I can’t live like this. I can’t go on day to day worrying something is going to happen to Luke, my family, my friends. It would be extremely rare that something would happen, right? And then I think of Gracie. How many people lose their almost 2 year old child to cancer? It’s rare, but it happened to me. And I know that rare things can happen and that nobody is immune to them, whether it be cancer or a terrorist attack. Gracie’s cancer was kind of like a terrorist in her little body. It didn’t act fast. It was slow, painful, and brought worry and sadness to her and my family. But there were also times that this “terrorist” couldn’t bring my family down. We couldn’t live in fear and sadness all the time and it was the people around us and the love they gave our family and we gave each other that helped us overcome the “hostage-like” situation cancer put us in.

It was then on my walk home that I said to myself- What can make me feel not so scared and anxious and stressed? What makes me happy? I went through a list of things- shopping- no, lots of money- no, a new car- no, nothing “material” was going to help. And then it hit me! I am most happy when others around me are happy. There is nothing better than seeing or knowing you put a smile on the face of the person or people you are with. Talking to people, spending time with people and helping people are the most rewarding things you can do. The smiles and memories that are made when you surround yourself with people who make you smile and people who respect your differences and opinions is something that no terrorist in any form can take away from us.
This holiday season I hope to be able to put a smile on the faces of my family, friends and even strangers I meet. I believe that grace, kindness, and love can help so many overcome feelings of stress, fear and sadness that unspeakable events leave us feeling. One of my favorite Christmas songs is Let There Be Peace on Earth. I tear up every time I hear it because it seems so easy to live in Peace, but it is so hard for so many to do. So this year my Christmas wish is for Peace…..

Let there be Peace in the hearts of those who have lost a loved one in a terrorist attack.
Let there be Peace in the hearts of all people, regardless of race, religion, color, gender or nationality and hope that we can all get along and respect each other’s differences.
Let there be peace in the hearts of those who have lost a loved one.
Let there be Peace in the hearts of those who are battling cancer.
Let there be Peace in the hearts of those who are battling life threatening diseases.
Let there be Peace in the hearts of those who have lost a child.
And Please, Please, Please…
Let there be Peace on Earth.

“Magic Happens Here”

photo 3-3This past September has been on my mind quite a bit lately. September is one of those months that does not bring back wonderful, happy memories of Gracie. September was the month we learned Gracie’s tumors grew back. In fact, we found out this news on the first day back to school. My poor work friends who received frantic texts and messages to pray for my daughter because something was wrong as they were welcoming their new students into their classroom that day. Four years later and it’s still tough remembering that day, but what happened last month for childhood cancer awareness kept me busy, thankful, and finally accepting the phrase “everything happens for a purpose”.

I can’t stop thinking about how all of you, our community, the country, the world has begun to take interest in childhood cancer awareness month and did something to raise awareness. This past September I finally felt like we and so many others who have been fighting for awareness and action were finally being recognized and more importantly influencing others to participate. I saw so many Facebook profiles lit up gold, action/super heroes were profile pictures in honor of childhood cancer, baseball stadiums around the country were going gold, players were raising money, sports teams were wearing gold, news programs were sharing stories and raising awareness, music and tv stars were also active in raising awareness… there was so much going on world wide. Locally, we were also staying busy and welcoming all the wonderful events so many of you were planning for our foundation. From dress down days to local sports teams wearing gold to paint parties to so many local businesses donating a portion of their profits for the month, and so much more- you all were busy!! And we can’t thank you enough!

photo 1-6While all this was going on, Geoff and I were asked by Gracie’s medical team to attend a memorial weekend at Double H Ranch in Lake Luzerne. They have invited us every year since Gracie died but because of our busy schedules we couldn’t go. Which I was kind of relieved about. It’s kind of stressful thinking about spending a weekend with a bunch of strangers who also lost a child. What would we talk about that wouldn’t make the whole weekend sad and depressing?

Well, this year the invite came again and Geoff said let’s go because our busy schedule was not so busy that weekend. Reluctantly, I said yes. If you know my husband Geoff, you know that he loves to talk and has no problem carrying on a conversation with anyone or anything! So I thought great- he can do all the talking and I can listen and leave if I have to. So we set out on a Friday night, the 3 of us on a trip I will never forget.
We arrived at Double H and was welcomed by our camp counselor and brought us to the dining room to eat. The camp counselor followed us and stayed with us the whole time. I kept wondering why she was staying with us, but I just went along with it. So there we are at dinner, me barely speaking because I kept wondering what this weekend was going to bring, Luke all excited and up and down to the all you can drink juice and milk machine and Geoff quiet for once because food was involved…and we all know how he loves his food! So, I sat awkwardly through dinner with the counselor and when we finished she brought us to our sleeping quarters in the Bobcat cabin. Luke fell in love with the place, Geoff and I felt like we were back in our college dorm room! Once we unpacked we headed to the bonfire, with our camp counselor in tow (at this point I thought, whatever!). We walked to a beautiful spacious area at the bottom of a ski slope (yes, this place has its own ski mountain with a chairlift!) and was greeted by more counselors at a smore’s table. Of course, Luke wanted smore’s and by then I had lost Geoff. He was already off in deep conversation with other parents, telling the stories of their deceased children. So there I was sitting on a blanket by myself, very uncomfortable and hoping no one would ask me my story. If they did I knew the flood gates were going to open and it was not going to be pretty. Luckily, one of Gracie’s nurses showed up at that point. Thank God Rebecca was there! I immediately started to feel at ease. While I was talking to Rebecca, Luke had started to wander off and wanted to check out this place. So as he starts exploring the camp counselor gets up and so do I to follow him. That’s when Rebecca informed me that the counselors are there for the kids and will stay with him when he wants to do stuff and we want to talk. Finally it made sense to me! That’s why she was following us around everywhere, she was there for Luke! Great, I finally figured that out, but in the meantime more families were arriving and I felt like the elephant in the room conversations were coming. Luke was gone so that meant more time to talk about my dead daughter…. I just didn’t want to. I was sad and mad and depressed that I was there and was a part of this group. No parent ever wants to be a part of this group.

A very nice family moved in closer to us as the night went on. Luke was still off with the counselor and this family had just started to make conversation with us. The casual conversation about everyday things all of a sudden turned into a conversation about their deceased son. They spoke about him with such love and comfort in their memories. I was starting to feel comfortable and loved listening to them talk about their son. He was 2 years old when he died from Leukemia 11 years ago. They have been to this camp every year since he passed and at that moment I could see how therapeutic and special this weekend at Double H is for those who have lost a child, a brother or a sister. These people talked about their child openly and often because it was ok, it was acceptable and we were all in the same boat. This was a weekend to remember Gracie, to talk about her and all the memories we had. I knew that I was going to be ok and that this wasn’t about or for me. This weekend was for my family and for Gracie. The family we met continued to talk about their son for a while and Geoff had starting telling them about Gracie. The whole family was listening and at one point in the conversation their 8 year old daughter turned to me and in the sweetest, most innocent voice asked me how old Gracie was when she died. She said it so innocently, but yet it sounded so weird to hear those words come from an 8 year olds mouth… I just wish no child would ever have to ask that question. I barely got out the words “almost 2” when the floodgates opened. I cried, but it was ok. I didn’t feel like the elephant in the room anymore and started feeling comfortable and aware of what this weekend was truly about.

From that point on the weekend was wonderful. Even though Gracie wasn’t there I felt like she was part of the memories we made as a family. The food was plentiful, delicious and never ending! The activities were unbelievable- archery, ropes course high in the tree tops, out door cooking, swimming, science experiments, amazing and not so ordinary crafts, connect 4 tournaments, and so much more! Double H really goes out of its way to make it a super fun place for kids and adults! There were so many smiles from all the siblings this weekend that I can’t even imagine what this place is like all summer long! Double H Ranch is occupied all summer long with kids who have life threatening illnesses. The motto at Double H is “magic happens here” and boy can I see that happening. The place is amazing and magical. Gracie would have gone there if she was still here and I bet she would have loved it.

On Saturday night there was a memorial service for all the kids who have passed away over the years. It was beautiful and the service touched so many hearts in the unique way they remember all our children that are gone too soon. There were lots and lots of tears at this service. Tears because I was missing Gracie and then tears because of all the kids I watched in this video that have passed away. I was so mad and sad as those pictures flashed and the names were read. I was mad and sad because it was too many. Too many young lives taken too early. When my tears finally stopped I reminded myself that this is why we have our foundation and that everything has a purpose. This is why so many of you went gold in September. This is why childhood cancer awareness month is so important. All of these faces gone too soon made me ready to continue our fight until a cure is found. September’s fundraising efforts and awareness was simply Amazing. But I’m asking all of you to please continue to raise awareness and take action in the fight against cancer because kids don’t get cancer just in the month of September. It happens everyday of every month. September may have passed, but the fight never ends.

If you’d like to learn more about Double H Ranch please visit www.doublehranch.org

Meet Will

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Today is the last day of Childhood Cancer Awareness month! Meet our 5th AMAZING kid, Will! Will was diagnosed with cancer before Gracie was born. Our foundation was not created yet, so therefore we were not able to help them during Will’s fight, but the Schrader family was there to help us during Gracie’s battle with cancer and they continue to support our foundation. Even though our children’s fight with cancer was different, it is still the same on so many levels. We’ve experienced the ups and downs, the hospital stays, the grueling treatments, the unknown… and with that a bond is created. One that no parent wants to have, but one that is so supportive and needed when no one else knows or even wants to know what you’re talking about. I remember praying every night for Will and when reading what Jill wrote I cannot believe it’s been 4 years post transplant! My son played Lacrosse with Will this summer and as I sat on the sidelines watching I thanked God that Will was healthy, active and one heck of an athlete! Will~ you are AMAZING!

“Will somehow cut his finger – we dont know how and we don’t know why but it was a blessing in disguise.

The weekend of July 10th 2009 Will wasn’t feeling that great at all. He had gone to his 9 month check-up the previous Thursday and got his Hepatitis B shot. He was feverish on and off over the weekend. We thought it was a combination of teething and the shot. On Monday, his mannerisms got a bit weirder when everytime we picked him up he seemed like he tightened his body and held his legs up in the air. Maybe his ribs hurt, maybe his arms hurt, maybe the shot is still sore, I even started to think that maybe the shot had settled in his joints (is that even possible??). We called our pediatrician on Monday night after hours and he said to bring Will right in the next day. He said it just wasn’t normal. Andy took Will to the appointment and our pediatrician sent us to St. Lukes hospital in Utica to be admitted. Why?
Will had this cut on his finger and we didn’t know how he got it. We had noticed it the previous week and put neosporin on it, never really making a second thought. The finger had an infection that his body was trying to fight causing a lymph node to swell under his right armpit. Thats why Will was so uncomfortable when we were picking him up! His lymph node was extremely sore and by this time – swelled! We needed to go to the hospital to get antibiotics immediately, at least 48 hours of the antibiotics to help Will fight the infection.
We headed up to the hospital and got Will admitted. After an ultrasound and an x-ray of the lymph node we were headed back up to Wills room. Thats when things turned weird. The nurse was asked to watch our child and we were asked to follow the Dr. into a private room to talk. He kept saying he was sorry and that the white blood cell count was over 580,000. What? We didn’t understand? We were confused there were so many words and I’m sorry’s. We didn’t understand. Then we heard the word – Leukemia. Neither of us had any idea what we were in for.
We went straight in an ambulance to Upstate Medical Center, in Syracuse, NY.
Will was discharged in December of 2009 after 5 rounds of chemotherapy treatment, mostly inpatient stays with no more than 5 nights at hope throughout the months. After discharge we were getting regular checkups for the first 6 months, every month. For the next 6 months checkups were every other month. While there for what would have been his 1 yr of remission appt in December of 2010 Wills bloodwork showed that he had relapsed. He was immediately admitted. After two rounds of chemotherpy and an extensive search for a Bone Marrow Donor he was transferred to Boston Childrens Hospital for a Bone Marrow Transplant. We had no idea what we were in store for but we knew that the transplant was the only hope for a cancer free life.

It was all business from the start – 2 times daily radiations treatments, extensive chemo to kill all of his blood cells, then on the 10th day the bone marrow arrived and on February 26, 2011 Will recived his new life. His body fought hard to accept the new cells. After many transfusions, pokes, exams, medicines, his body started to recover….we were then transferred to the Ronald McDonald House in Boston and spend almost 2 weeks there with daily visits to the hospital. On April 12th 2011 Will was able to travel home from Boston with follow up for weekly visits.

Will is now currently 4 years post transplant remission. In February of 2016 he will be 5 years clear of the cancer. He will be 7 years old next month and he is a thriving 2nd grader that plays football, basketball, baseball and soccer!! We are so thankful!! One of my favorite charities to give to other than Gracies Foundation is the Make-A-Wish Foundation. Will was granted his “wish” of a hockey rink in his own back yard and to him that wish was one of the best things that could have ever happened!!”