(Note: The picture shown left is Ethan Herman with Julia Gilbert, a volunteer from Rainbows for Kids. If you know of a family in the St. Louis area who has a child going through cancer, email RSVPRainbowsForKids@gmail.com to help them get involved in their fun activities. Rainbows is the official charity of STLSportsPage.com.)
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By Ronnie Herman
The day my three-year old son was diagnosed with leukemia was a day that changed my life forever. My son Ethan was one month shy of his third birthday and getting the diagnosis that we got was devastating. Little did I know how that one diagnosis would compound into so much more. I was very fortunate to have an oncologist that was caring, smart and would also be an advocate along side of me for my son.
One thing I never would have thought I would have learned about was the whole process and all of the little things I would have come to learn about.
First advice I would give would be to make sure you have confidence and faith in your child or loved ones doctor. If you don’t have that, find one.
Secondly, be an advocate for your loved one. No one knows them like you do and you need to trust your instincts. Any time a doctor or nurse came into my child’s room and did anything, I asked questions.
If they were taking his vitals, I asked what his vitals were. If they were putting something in his IV, I would ask what it was, who ordered it and what the side effects were.
When a doctor came in, I would ask lots of questions. And if he was the type of doctor who would scoot out of the room really quick, I would get between him and the door to make sure all of my questions were answered before he left.
It is amazing how many mistakes you can find even with no medical education. You become a medical expert on your child. If it doesn’t sound right to you, keep asking until it does or they do something different. It is ok to question a doctor or a nurse and find other avenues to accomplish what needs to be done.
I hate to say to go to the internet, but sometimes there are good answers on the internet. If it makes sense to you, bring it up and let them tell you either why they cannot do it that way or change their mind.
Four days after my son was diagnosed with leukemia, we were coming to terms with it. We knew that it was not the end of the world.
For those needing help and support, the Leukemia & Lymphoma Society has a lot of references. The local St. Louis chapter, called the Gateway Chapter website–https://www.lls.org/gateway—gives information on patient support.
Families are able to speak one-on-one with an Information Specialist who can assist them through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information. According to their websiste, their Information Specialists are master’s level oncology social workers, nurses and health educators. You can call 1-800-955-4572 or email firstname.lastname@example.org.
The LLS also offers support groups for families of children or teens.
Leukemia is a very treatable disease these days, but for us, the unthinkable happened. He suffered a massive brain hemorrhage from the induction chemo. This is like a one in a million side effect—so if you are reading this after having your child just diagnosed, you will most probably not have to deal with this, but we did and I want to help others who experience complications. I also want to touch on ways to cope with possible long-term effects. So while our story with Ethan is extreme when being diagnosed with childhood Leukemia, we learned so much and I want to help other families by sharing my story.
Ethan almost died on us. He was flown to a specialized hospital and they had all but given up on him. They told us to call our family up to the hospital and brought in a priest.
Of course I became a mama bear and they started working on him. They told me that he was no longer the child I had brought to the hospital. I told them that he was my baby and I didn’t care if he had changed. I wanted him any way that I could have him. They told me that he would be in a vegetative state, then they told me he would never walk or talk, then they told me he would be violent.
It didn’t matter to me. He is my child and I am going to do anything I can to save my child.
He indeed survived, and so did his sister Abby (both are shown in picture, left) who though she is Ethan’s twin, she did not suffer from the devastating health situations. Throughout his young life he has been a special needs child, sometimes in a wheel chair, sometimes even walking on his own, but he is by no means a vegetable.
As it turns out, he walks, talks, and is the opposite of violent. He’s probably the happiest person I know. One day I asked the neurologist how far he thought he could go and he told me “Who knows. Who would have ever thought he would have come this far”.
The fact is is that they DON’T know. And this is the reason for me writing this article. I want to encourage you that no matter what the situation is you just have to keep fighting and never think it is the end.
They have no idea what the brain is capable of doing. Ethan is 15 years in remission. 15 years post traumatic brain injury. Do I mourn the child that could have been? Yes. He has a twin sister. Every time she reaches a milestone in her life, a part of my heart breaks for Ethan in the fact that he will never go on his first date or get his driver’s license. But the fact that he is here with me and that I still get the privilege of having a child that is such a wonderful person is good enough for me. Ethan is functioning in some ways like your typical 18 year old child. He loves pretty girls, and sometimes talks like a truck driver. (I attribute that to having lots of brothers). But that is what I consider normal behavior. That’s what you want for your child, to fit in.
Mentally I would say that he is like a 3 year old. He needs help walking and doesn’t always express himself well. I will forever be dressing him, bathing him and diapering him. He is completely dependent, but I have him with me and he makes me smile more than anyone else in the world.
He has had many complications. I have gotten several second opinions on things. Sometimes I have had to travel to get those second opinions. The second opinions are worth it.
For many years, I had no resources and didn’t even know that any were out there other than the Special School District, which has been a life saver.
One of the negatives of treating a child with pediatric cancer is the treatments can often have long-term effects. We are happy our child lived from cancer but there are many other problems they may face in their life. This can happen to anyone, not just someone like Ethan who had the stroke. It’s worth mentioning that you will be your child’s best advocate, so keep looking. You will find solutions.
Do I mourn the child that could have been? Yes. Especially since he has a twin sister. Every time she reaches a milestone in her life, a part of my heart breaks for Ethan in the fact that he will never go on his first date or get his driver’s license. But the fact that he is here with me and that I still get the privilege of having a child that is such a wonderful person is good enough for me. Ethan is functioning in some ways like your typical 18 year old child. He loves pretty girls, and sometimes talks like a truck driver. ( I attribute that to having lots of brothers). But mentally I would say that he is like a 3 year old. He needs help walking and doesn’t always express himself well.
I will forever be dressing him, bathing him and diapering him. He is completely dependent. But I have him with me and he makes me smile more than anyone else in the world. He has had many complications. I have gotten several second opinions on things. Sometimes I have had to travel to get those second opinions.
They are worth it. For many years, I had no resources and didn’t even know that any were out there other than the Special School District, which has been a life saver. The Special School District has many resources and if you find yourself in a similar situation, ask them.
After about seven years, I got him a case manager with the Regional Center of St. Louis.https://dmh.mo.gov/dd/facilities/stlouis.html
It is a process, but they have lots of resources and open a lot of doors. Many times I have found that I had to be his advocate. No one will fight for your child like you will so you have got to be willing to do that. They also put out a newsletter every year on different things to do in the summer.
The St. Louis ARC is a resource that I just stumbled upon, and hopefully if there is someone reading this article who needs their help they will know to contact them. https://www.slarc.org/. The St. Louis Arc provides a lifetime of high-quality services, family support, and advocacy to people with intellectual and developmental disabilities.
They provide a wealth of information. Their mission is : The Mission of the St. Louis Arc is to empower people with intellectual and developmental disabilities and their families to lead better lives by providing a lifetime of high-quality services, family support and advocacy. We are also guided by our core beliefs of Respect, Collaboration, and Empowerment. We work hard to provide the kind of individualized services that can really help make a difference to an adult… to a child… to a family. Services provided are designed to maximize choice and to support people as they build quality lives within the St. Louis community.
SLARC also does a R & R weekend camp at camp Wyman several times a year and Ethan loves this camp.
Children’s Home Society has helped with some respite. http://www.chsmo.org/developmental-disabilities/respite-care
Respite is where they help the caregivers because you have to allow yourself to take a break so you can stay strong. You have to take care of yourself or you can’t take care of your child. The Children’s Home Society is a safe place your child can stay if you need to go out of town or for some reason it would be helpful to place him or her for a couple of days.
They “strengthen and support families raising a child with developmental disabilities through our respite care services. Our compassionate staff provides a nurturing, home setting for children with disabilities from birth to 21 years of age, 24 hours a day, seven days a week.”
Something you would never think of…
One thing that I found ridiculous was that when your dependent child turns 18, they become an emancipated adult. You have to actually hire a lawyer and go to court to gain guardianship of your child. The St. Louis Arc was very helpful and they put on many classes about guardianship and other resources that are out there. They also provide respite hours that will assist you in paying someone to watch your child while you get to go out to dinner or see a movie every once in a while.
Lifebridge does fun stuff and they have lots of activities going on for children and adults. https://www.lifebridgestl.org/
They offer activities for disabled and special needs children and teens. They do several day camps each year, also.
Variety the Children’s Charity helps with camps and some expenses. https://varietystl.org/
I like to take Ethan to a place at the Lake of the Ozarks called Wonderland Camp. They are a specialized camp that takes children and adults with all kinds of different needs and abilities. They are wonderful and have thought of everything. Everyone who is associated with the camp are very passionate about what they do. http://wonderlandcamp.org. The mission of Wonderland Camp is to provide a fun, educational camp experience for children, teenagers and adults who have disabilities; to offer a respite from daily care giving for their family members and healthcare workers; and to provide and nurture a personal development experience for volunteers and staff.
To any family who finds themselves in a situation with a child who has special needs and exceptional challenges like Ethan, I wish you good luck and I also encourage you to take advantage of these organizations and continue looking to find more. There are people out there who will help you and love your child. It can get very tiring, I remember some times when I was so tired I wondered how I would go on. There were also times I felt hopeless, and looked to the skies and wondered “why did this happen to us.”
But through the love and support of my family and friends I continued to be diligent. It is important to keep doing things with other members of your family, and to remain a strong unit. My husband and I have continued to work together the efforts I have put into the rest of my family and not just Ethan’s care has helped us get to the point where we are today.
As a mother you know what needs to be done and if you see a need you will try to fill it. Don’t give up because there just might be a breakthrough or a service or a person right around the corner who could mean everything to you.
I want to leave you with this thought: while it’s hard to imagine at first, but something like this makes you enjoy the simpler things in life. You don’t sweat the small stuff. If it is not going to matter in five years, why get yourself upset about it. People think I am easy going and laid back. Really, I am not. But the petty stuff that people get upset about, doesn’t really get to me (after all I’ve faced.). And this is a positive that I take away from my experience with Ethan and this journey. I feel I’m a stronger person, maybe a more compassionate person, and definitely I enjoy the little things in life and don’t get stuck in the petty.
Good luck to you in your journey. If I can help in any way, feel free to email me.
Ronnie Herman email@example.com