To all of the veterans, a heartfelt, “Thank you” from the Tosch household.
This post is long and for that, I am sorry. I do not want to take away from the veterans, but my Facebook feed was very hard to read this morning. We learned that another child had passed due to cancer. Blake is now with Jesus and we are saddened by the news. Blake battled medulloblastoma just as Ella had. Blake joins Ella, Noah, Eva, Elijah, and many more children in Heaven. News of Chad Carr and Camille entering hospice care was also learned this morning. We’ve also been following Team Project Jonny and Jonny (battling medulloblastoma) is not doing well either.
Sarah and I are very saddened by all of this news. As I have shared before, Sarah and I were very unaware of pediatric cancer before Ella’s diagnosis last July. We’ve all seen the St Jude commercials filled with bald children and were quick to change the channel. We never thought that our child would be diagnosed with the “c” word. When Ella started to have seizures, I honestly thought that maybe she had a seizure disorder and that we would treat it, she’d stop the seizures, and we’d move on with our lives. Little did we know that our lives would drastically change on July 8th. Ella fought for over a year and she did it with such grace and strength. I still firmly believe that I will never meet a stronger person in my lifetime and she was only 2-years-old!
Cancer patients are unbelievably strong. I started my nursing career by working on an oncology unit. I continued to work in oncology until shortly after Ella was diagnosed. I left oncology nursing for reasons beyond Ella’s diagnosis, but I can say that my oncology patients were some of the strongest and most positive people that I had ever met. When people learned that I worked in oncology, they would always say, “That has to be tough.” The death…yes. That is never easy. Nothing else was hard about it. I learned so much from my patients. My patients had been through so much and yet, most had a positive outlook on life. Take my daughter for example. Ella would get sick and go right back to playing like nothing had happened. She wouldn’t complain of pain until it was truly too much for her to take. Sarah and I look back and are sure that Ella lived with pain that we were unaware of at the time. Ella has taught us what it means to be strong, to love unconditionally, and what it means to be truly happy. Ella has taught me so much and I am in awe of her. She is my hero.
The children and their families that we know or those we follow on Facebook share many similar qualities to Ella and us. Ella was a very spiritual child, which is amazing for her age. Many of these other children are also very spiritual. Many have said things that are far more mature than their age shows. I think that God speaks through these children. We feel alone or question God’s plan, but God is right there alongside our children and us. I am confident that God chooses these kids to go through this cancer journey for a reason. What it that reason? I don’t know. If we knew, many of us would work to avoid that call from God. Many of these kids continue to fight while many others have been called Home. As a cancer community, we all feel each other’s happiness and pain. When one child obtains remission or “cure,” we all rejoice. When a child goes to Heaven, we all mourn. Many of us are in that “club” and it sucks. We just cannot lose faith or question “why” because we may never know the answer to that question. If we may never know the answer, what’s the point in asking the question in the first place?
Ella entered Heaven on September 14th and 12:33pm. I will never forget that. This past year has been a blur. Even the past two months have been a blur. Many people told us that the pain of losing your child will never go away, but as time passes, you just aren’t consumed with it as often. I can agree with this. Sarah and I have been able to keep busy during the most recent days. This has helped us from dwelling in Ella’s passing. Sarah and I laugh about how silly Ella was, how much she loved a certain song, and often speak aloud to Ella. We visit Ella’s grave daily and it makes us feel better. I’ve met many people that have lost children (it’s amazing how many people are living with this burden and we don’t know it) and they say that they did the same thing. I find it hard to look at photos or videos of Ella. I think that it just reminds me how much that I miss her, but I will continue to do it. They say that distance makes the heart grow fonder. I’m a firm believer. As times passes, I miss her more. I can smile with memories of her, but cry even harder.
I have returned to work and it has been a great distraction for me. It has been hard, though, to be away from Sarah. Sarah has been my rock through this process and it hurts to be away from her while I’m at work because I know that there are times that she could use my shoulder to lean on. But, life moves forward. People ask us how were are “doing.” I say things like, “we’re taking it day by day” or “we’re okay.” Truly, I know that we’ll be okay, but this sucks. It really, really sucks. We have a fantastic support system. We have our family, friends, coworkers, and each other. We are truly grateful for each and every person in our lives. The concern for us is real and we appreciate it. I appreciate that people are not avoiding us, though many don’t know how to approach us. We appreciate all of the heartfelt, caring words and the warm hugs.
As the days go on, I’m sure that we will learn that many of our friends and Facebook acquaintances have gone to Heaven. This world of pediatric cancer is real. I’ve read posts by parents that are living with true fear, fear that their children’s cancer may return or worse. Every time that their child has a fever, falls down, coughs, gets a bruise, has a headache, etc…all of these things could mean a relapse or progression of cancer. Why can’t it just be a bruise or a headache? We’ve lived with those fears and we “get it.” Please don’t ever stop being childhood cancer aware. Please continue to wear your shirts or bracelets that may support a child fighting cancer. These items may start a dialogue about pediatric cancer and make more people aware. Awareness can bring about research. Research can help find cures. Our children are dying and it sucks. Pediatric cancer doesn’t just affect the child and their immediate families. What about the grandparents, the aunts, uncles, cousins, or friends? We are all affected. Our children are being robbed of 70-80 years of life. They need a chance.
To support pediatric cancer, please donate to charity or a research organization. Some dear to our hearts are:
http://www.bagsoffunkansascity.org
http://www.noahsbandageproject.com
Sarah and I continue to mourn our physical loss, but will always celebrate the spirit and love of Ella. Ella has taught us so many great things. Ella is in Heaven and it’s a hard reality, but many great things have come from Ella and her journey. We know that we will see her again and that we are truly blessed people. God really is good. I believe that and I pray that you do too!
Thank you to everyone, for all of your continuous love and support. Sarah and I are truly blessed. Please keep Joe, Malina, Jonah, Camille, Brooklynn, Avery, Blake, Eva, Noah, Jonny, Chad and all of the other kids and their families that are continuing to fight or that are grieving, in your prayers. We love you all. God bless! Saint Ella, my hero, pray for us!
The video is from when Ella was in remission. This was her first ever attempt at hitting a ball. I post this in honor of the World Series champion Kansas City Royals. This has been an exciting time to live in KC and we love that they have supported Noah and the Wilson family. Truly a great organization.
Positively Ella 