Home Invasion

Written by Candice, Mom to Caleb 

When you hear the term home invasion, what comes to mind? It is defined as a burglary of a dwelling while residents are home. To most people, that is what comes to mind... But for 36 families a day something else comes to mind. Cancer. When you're told that your innocent child has cancer you are robbed point blank of all that you have ever known. Your world is turned upside down and all you knew before has been tainted.

On March 13, 2012, our home invasion occurred. It was my 33rd birthday as we sat patiently in our local Children's Hospital Emergency room awaiting the results of his CBC. Earlier in the week my normally healthy and very active four year old, Caleb, had fallen at soccer and complained of pain in his arm. They had put a cast on his arm and now he had pain in his leg. After not walking for the weekend, his orthopedic sent us to the ER thinking he may have a bacterial infection in his hip. He began walking again while in the ER and the orthopedic stated, "Let's just run this lab and you can be on your way." The CBC was taking abnormally long and I still did not know that what I was about to hear would change our lives forever.

Eventually, the ER doctor came in and I can still remember, clear as day, her talking very slowly, leaning up against the counter and the look she gave me. She said the results of his labs are back and I don't know how else to tell you this, but we believe your son has leukemia. I went absolutely numb, my sight went blurry and all I remember is the people in the room shuffling things around near me. Faintly I remember Caleb saying, "What is wrong with Mama?" The doctor then pushed two chairs together so I could lay down and she gave me damp face rags for my forehead because I felt sick and weak.

At that moment our lives were invaded and our world, as we knew it, was turned upside down. A lot of families I have met since my sons' journey began nearly 11 months ago feel the same way. Majority of them found out randomly and it was a complete and utter shock. But most of us found out because we kept pressing an underlying issue and had that "mother's intuition." Cancer was never something that crossed any of our minds as parents. Childhood cancer especially never crossed any of our minds and why would it? I would be the first to admit how naive and uneducated I was about childhood cancer prior to that day. Had I heard about leukemia and other childhood cancers? Yes. I saw commericals on television, heard of fundraisers and drives on social networking for other kids, but I would've never imagined that my own son and I would be thrown into this world of childhood cancer. We were though and that day we began his fight, the fight to save his life.

When first diagnosed you spend the first two weeks or so inpatient. I remember being in a zombie state of mind the first two weeks. Everything seems to just be a blur. Within the day of hearing the worst possible news as a parent you need to start making decisions that will ultimately begin to save your child's life. You talk studies, clinical trials, genetics, chemotherapy and side effects that can be minor or major and you put your signature on more papers than at the closing of a house. You and your child have no normal sleeping pattern, as nurses and doctors are in and out of your room sporadically at all hours of the night and your mind is racing a hundred miles a minute. Your child has major surgery in the first days of treatment to have their portacath placed in their chest so they can receive treatment. I can still remember how scared my son was in the first few days. The questions he'd ask and to this day he still talks about the day I was crying after the doctor told me "his blood was sick".

All normalcy stops and you have a new normal with a cancer diagnosis. Children and parents get pulled from normal routines. Work, school and life is basically put on hold. You need to worry about your child's counts and keeping them safe from germs. Your purse or bag is filled with more antibacterial than you ever thought you'd have to purchase in your lifetime and more thermometers than a normal family keeps in their home. Your nurses and doctors become like a second family and your child's and your friends change. Some people you were very close with become acquaintances and some people that were complete strangers become best friends. Sadly, with a cancer diagnosis a lot of people not directly affected by it do not know how to handle it. Not only does cancer effect the immediate family, but extended. You gain and lose friends. Some friends just grow distant because they don't know what to say or catch you at the wrong moment. You gain many new friends going through the same journey with their children. They are there for you at all times, like you are for them and at many times there more than family because they understand. Phone calls, text messages and emails at any hour is expected. The friends that I have met along this journey call each other "the friends we wish we never met." The only reason our paths crossed was because our innocent children were picked to battle this wretched disease and us by their sides. In the end, we all fight this together.

Throughout treatment, as a parent, you have highs and lows. You experience and see random acts of kindness by people you have never met. It opens your eyes to the good in this world and in our society. You also have the lowest of low days when you don't even want to get out of bed and wish it was just all a bad dream. I had many days like that, especially while inpatient. You wake up thinking was this all just a bad dream and then reality hits as the IV Pole monitor is beeping and nurses come rushing in. You need to help your child understand how and why things are different now. Instead of going to the park or playing with friends, they are going to clinic or spending the day at home. One thing that was difficult for my son was losing his hair. For as long as I can remember, he never liked hair cuts and you would think losing hair wouldn't really affect a boy as much as a girl. Truth is, it really did bother my son, especially since he didn't want to wear baseball hats much. You'd be surprised but people stared a lot more than I had expected and even being four years old at the time, he noticed it too. I know people don't mean to be rude and stare, but I think they are all just unaware about childhood cancer.

Also on the day my son with diagnosed I became an advocate, like many of my "friends I wish I never met." We became a voice for these kids. When you are thrown into this world of cancer you realize how naive you have been to not know how childhood cancer is NOT rare and how underfunded it is. It saddens you to find out how little funding and research there is for childhood cancer, but it also lights the fire in you to do something about it. So sadly, the parents who are standing strong by their child's side fighting with them as they undergo harsh treatment to try and save their lives must also be the voice and driving force behind them to help create awareness and gain funding to ultimately find a cure so no child has to endure this wretched disease.

Overall, even though hearing the worst news any parent could hear you have two paths to chose from. You can sit back on the sidelines or you can use your voice and your experiences to grow from it. I chose to grow from it. I learned more valuable life lessons in the last eleven months than in my 33 years to date. I learned to appreciate each day, each blessing and every moment with not only my son, but everyone in my life. It taught me to live each moment like it is my last, because as I had learned things can change dramatically in minutes. I promised myself that from that day forward I will be an advocate for my son and all the children battling this disease because they so desperately need a voice. Each year some kids and parents celebrate their "cancerversary" in some way. My birthday will never be the same for me, but I am going to try and do something positive instead of dwell on the horrifying news I was told on that day. This year I am becoming a Volunteer Ambassador for Be The Match and planning on holding a donor drive for a young girl we met in clinic who is in search of her perfect match. In this past year I have learned that there are many generous and kind people that want to help you during difficult times and I, in turn, want to be that to someone else. I believe that by paying it forward and helping someone in need in some way, my son will learn a valuable life lesson.

Candice
"Caleb's Mama"
helpcurecaleb.blogspot.com
www.facebook.com/kickinitwithcaleb

Caleb Blaise is five years old and battling Hypodiploid Acute Lymphoblastic Leukemia and in the very high risk category. He is currently in his maintenance phase of treatment, which will last until June 24, 2015. Caleb is responding well to his current protocol. Please feel free to share his story to help create awareness and follow his journey on his blog or facebook.

Special emotions

As written by Rachel, Mom to Hannah

Being a parent of a child with cancer brings so many emotions. Some of them are obvious like sadness, fear, and anger, but some of them can only be known by those select chosen ones. One of the biggest emotions I have experienced has been guilt. Although childhood cancer has no known cause, a mother can’t help but wonder what she did wrong that her child wound up with cancer. Was it something I did while I was pregnant? Is it something she came into contact with as a baby? No matter how much those doctors tell you that it was nothing you did and no way you could’ve prevented it, those thoughts never leave your head. Then you have all the people out there suggesting things that can cause cancer and although they may have the best intentions, it just makes a mother feel even worse. You just want to shout from the rooftops that there are just some things that can’t be explained! I also experienced guilt because Hannah was experiencing pain for a few months before she was diagnosed. The doctors don’t feel like all of it was related to her leukemia, but the back pain that brought us into the hospital, that she had for a month prior to diagnosis, was. I thought she was just having muscle pain and encouraged her to continue on with her activities. She had a dance recital a few weeks before her diagnosis and was in pain that day. I encouraged her to dance anyway because she had been preparing all year for that one day. She did and I could tell she was in pain while she was up on that stage dancing. Little did I know that the pain she was in was from leukemia eating away the marrow in her bones. When we found out she had leukemia only a few weeks later, I felt horrible. I knew something was wrong with my little girl, obviously, but I never could have imagined that it was something so serious.

Something else us “special” parents get to feel is guilt over not spending enough time with our other children. Hannah has two little brothers, age 6 and 4. My husband, their dad, works long hours and I am a stay at home mom. I have always been so happy that I have been able to stay home with my kids while they’re so young. However, when Hannah was diagnosed I obviously couldn’t be two places at once. She was diagnosed in the summer so we had to find care for the boys. Thankfully we have a lot of help from family and we were able to get them into a summer program and then after school care when school started back up. I felt like a horrible mom that I wasn’t the one spending time with them, that they were uprooted from their lives and spending time in places that they’re not used to being. I felt, and still feel, like they’re going to forever hate me for not spending time with them and always being at the hospital with Hannah. We do our best explaining to them that Hannah is sick and needs someone to be at the hospital with her because wouldn’t they want mommy with them if they were sick and in the hospital? I think they understand, but that fear and guilt is always there for me. Talking to your child on the phone and having them cry and beg for you to come home and likewise having your child with cancer beg to have her family back together is excrutiatingly painful.

Another emotion that caught me off guard was remorse for the loss of our former lives. A childhood cancer diagnosis forever changes the life of not only the child with cancer, but the entire family. When I used to complain that we had to be at several different activities at once during the evenings during the week, I was now wishing that was our major dilemma for the week. Going on Facebook or any other social networking site and seeing pictures of your friends kids that are your child’s age or in your child’s class doing normal typical childhood things send you into a tailspin of emotions. Not only did Hannah have to miss out on her activities (dance and soccer), but her brothers did too (karate for both of them, football for our 6 year old, and soccer for the 4 year old). I didn’t want to put the burden of taking them to their activities on the family members that were watching them. At the beginning of Hannah’s diagnosis, we were told that she’d be in treatment for 2 and ½ years. That’s 2 and ½ years that every time she gets a fever, we’re sent to the hospital. Now that Hannah had a bone marrow transplant, although chemotherapy is over, her immune system is so severely compromised that we must stay at home for approximately 6 months. Our 6 year old has begged to go do things on the weekends, but we have to tell him no because Hannah can’t do that. Once again, it’s absolutely heartbreaking. Then you have the people that say “That is great that Hannah is all better now!” Well, yes, but she will never truly be the same that she would have been without having leukemia. Her bones are severely weakened from the leukemia and from steroids that are part of the treatment. We’ve been lucky enough so far, her organs can suffer effects from the chemos and the radiation. Her skin is forever severely sensitive to the sun so we need to be extra careful that she doesn’t spend a lot of time in direct sunlight. Hannah’s life will never be the way it would have been without a childhood cancer diagnosis.

Another unexpected emotion that I’ve experienced as a parent of a child with cancer is pride. You really have to meet a child with cancer to truly understand. Each and every child I have met has this aura about them that emits positive energy. Hannah has amazed me more times than I can count with how strong and positive she is. Several times I’ve watched a video online that touched my heart or learned of a child that isn’t doing well, has relapsed, or even died and it upsets me. She’ll come into the room and see me upset, sit next to me and give me a look with those beautiful blue eyes and say “Mommy, it’s going to be ok.” We were in the hospital for a month this past fall because Hannah had gotten a fever and her counts were too low to go home. Our neighbor, a 16 month old baby that had leukemia. Hannah loves babies and grew especially attached to this little girl. Every time we walked past their room she’d peek in and wave. She asked about her every day. A month after we went home she passed away. This little girl had her whole life ahead of her, had that aura that I mentioned before, had a smile that could melt your heart, had tons of energy and squealed with delight in the hallway despite what her little body was going through. Of course it upset me terribly and I cringed with the thought of telling Hannah that she had passed away. Little did I know that my 8 year old daughter would take that news with grace and calmness. I couldn’t get the words out without choking up. She looked at me came around to my side of the table, hugged me, and said “It’s ok Mommy, because she is in heaven and she can play all day long now.” My little girl that I was afraid to tell for fear that she’d be upset or scared was comforting me! I will forever be amazed by the strength she exhibits and I am so proud and honored to be her mother.

I’m obviously not thankful that my child has cancer, but I’m thankful for many things that this diagnosis has brought to our family. I have a greater appreciation for the little things in life and for the special people in this world.

My child is different

As told by Cori, Mom to Bella

My child is different. I knew that the moment she was born, though you couldn't tell from the outside. I could just feel it. She changed my life. For the better. I knew she was gonna grow up and do amazing things.

When I got the call at 3am that confirmed she had ALL Leukemia I was in a disarray. I wasn't sure what to think. I just knew I had to trust in God, that she would still do amazing things. They just may not be what I envisioned for her.

Seeing her go through so much pain from a simple blood test that ended with a bone marrow biopsy, a major surgery to insert her port-a-cath, starting chemo, and 10 days inpatient were tough.

When she got a high fever after only being home from 6 days and ended up being admitted for 26 days because of a blood infection I was scared. But after 29 days of chemo and countless blood and platelet transfusions I got the call from the doctor that unlike 98% of ALL patients Bella did not go into remission. I was then terrified. At this point, I couldn't hold it in anymore. All I could do was cry and pray to God that I needed Him. He had to make her better. I couldn't lose my little girl. Things get a little easier but the pain never ceases. Some days it just hits you like a freight train that your once healthy child now has a life threatening disease.

Now when people see Bella, they can tell she is different. She doesn't have much hair, she wears a mask and she has a port inside her chest. She can't play at the park or McDonald's without fear of getting deathly sick. She goes to the doctor at lease once a week to receive chemo. Her best friends are the doctors and nurses she sees almost everyday. She is a champion pill swallower. Did I mention she is 3 years old? She is amazing. Her courage and strength can only come from one place. God.

He loves her more than I can fathom, which is difficult to do since I love nothing more in this world than my children and Jesus. I must put my trust and faith in Him. He can see the big picture even tho I cannot. He will lead me where I am supposed to go.

Just like I feel He is leading me to become more involved in raising awareness for childhood cancer. If I reach only 1 person. That will be enough. Today Bella is in remission. It took a very long 4 months to reach that goal but we did it, but it wasn't without a few tears shed and many sleepless nights. We still have 2 years left of treatment and I am still scared everyday that I could lose my child, but I must be strong for her and my family. God is on our side.

Please visit Bella's Blog and Facebook  

to show support in any way, whether it is prayer, sharing her story, or just to love on them!

And then it all changed

Written by Cynthia, Mom to Ava

Ava and I were sitting in the car outside her doctor's office finishing a snack. We had just come from the hospital where she had a CT scan because she was falling down and losing her balance. I had no idea walking back into that office we would receive the worst news ever, our four year old daughter had a brain tumor. I couldn't breathe. The world that I knew changed. It went from dreaming of what Ava would be when she grew up to wondering if she would live another year. We went from taking her to school each morning to taking her to radiation and chemo appointments everyday. The tumor Ava had (DIPG) was inoperable and terminal upon diagnosis. She was given 9-12 months to live. The diagnosis was devastating. Kids aren't supposed to get cancer, but they do. In a matter of a week we went from having a healthy child to a death sentence. That time is still a blur to me and Ava is the only reason I made it through. She saw me crying and told me not to worry because she would be okay. Whenever I would feel weak her strength would lift me up. Her smile and laugh could always bring me out of sadness. She fought so hard but ultimately cancer won. Ava passed away in November. Our family is trying to find a way to manage in this new life without her. Simply put, it is very difficult. The smallest reminder can bring our grief to the surface. As we pick up the pieces, I am thankful. Thankful for the gold hope project and the hope it is bringing families in their darkest moments. Times when they don't know what the future holds. These fighter's smiles light up so many hearts and show us what courage really means. I can't imagine a better way for Ava's memory to live on.

 Ava was the inspiration for The Gold Hope Project, she will forever be our first Gold Ambassador