"Mrs. Whitaker, I'm sorry to tell you this, but your son has a brain tumor. You need to meet a Dr.Pattisipu in the emergency room at Florida Hospital". Those were the words that changed our lives forever. That was April 9, 2004, Good Friday. Since that day, we have had two surgeries, shunts, six weeks of conformal radiation, countless chemotherapy drugs, shots to boost immune systems, physical therapy, occupational therapy, and what seems like 50 different other types of medicines.
I'm not going to make this a sad story. Are we scared that the tumor might come back? Sure, there isn't a day that goes by when I don't think about it. Danny is alive and fighting. That's what you concentrate on. Make every day the most important day. There are no guarantees in life.
We are so fortunate to have wonderful and supportive family and friends. My husband Dan and my daughter Amanda have been so great. This experience has truly brought our family closer. It made us stop and take time out for each other. Our parents and siblings have also been wonderful sources of support.
But there are other options. There are support groups .If you want to remain somewhat anonymous there are even on-line support groups. There is a wonderful on-line service for individuals who have long term illness at www.caringbridge.org . You can keep a journal of daily progress, post pictures, and your friends and family can leave you a message of support. It's really wonderful to know that you're cared for. Danny's site is www2.caringbridge.org/fl/dannyw.
There are also some wonderful organizations out there. BASE Camp is a useful organization. It offers help, hope, support, and it allows your children to form relationships with other children who have similar or the same disabilities. Your kids don't have to explain what's wrong, because, the other kids understand. Also, it gives your kids an outlet to share their feelings and concerns. Sometimes kids don't want to ask their parents questions. They don't want to upset you. So, it's nice that they have that option. All your children are included in this organization.
There is Boggy Creek Camp, where children get to go to camp. There are trained professionals there, and things like swimming, campfires and camaraderie with other campers. It's a welcome sense of normalcy for your children. What a great thing to do something as simple as camping. To some kids, this kind of thing means everything.
Don't forget your social worker. Usually, your doctor has one assigned to his or her office. Social workers can tell you about all of the organizations in your area to help guide you through financial aid issues. They are there to listen if you need to talk, or just to be a shoulder to cry on. We have a wonderful social worker. She has helped me in so many ways. You can also talk to your doctors and nurses. If you have a specific problem or fears, the chances are they've heard it before, and they can help.
There is another type of social worker in the hospital. They are called Child-life specialists. They can speak to your children. They are specially trained to communicate on a child's level. The concept is a great tool. Like I said before, some kids would prefer to talk to someone else. Don't be offended. They just don't want to upset you any further. Let them help you and your children. You won't regret it.
You have to be an advocate for your child. When you get an MRI, get a copy. It's much easier to ask at the time of the test. All you have to do is ask the tech who is administering it. If there is a medicine that you feel isn't working, ask if there are alternatives. You know your child best. If you have a gut feeling that just won't go away then act on it. Don't ever feel intimidated. You may not be a doctor, but you are a parent. I ask the doctors to explain things in simple terms if I don't understand. Don't feel bad if you seek second and third opinions. Most doctors encourage you to do so anyway. The only things I have regretted are the things I didn't ask or do.
There's another way in which we have been lucky. We have a strong belief in God. He has a plan for everyone, and we just have to have faith in his wisdom and love. Danny taught me something; he told me that he was not afraid to die. He told me that Heaven is peaceful and that if he died, my Grandma would take care of him until I get there.
We had a friend Sarah who passed away, and he told me not to cry because now she wasn't in pain anymore. That's pretty smart for a six year old. He has told me that Heaven is wonderful and that you can eat whatever you want. When he speaks of death, it makes me sad. I just have to answer his questions to the best of my ability and hope he is satisfied with the answers. We also have a wonderful church family. When we were doing radiation every day, they dropped off meals. It was simple, but, it meant that I could take a nap with Danny. We had radiation at 6:30 AM. I was so grateful to them.
No one wants bad things to happen to them. Ultimately, it's how you handle those bad things. I know I haven't always been the greatest at this. I just do the best I can. That's all that anyone expects. Just remember to make the most out of the time you do have. I tell my husband and my children that I love them, several times each day.
I hope this story helped. I can't say everything I want. There's not enough space. Feel free to contact me thru Danny's site at www2.caringbridge.org/fl/dannyw. I look forward to making new friends, who also understand how difficult it is.